Breathing Better Living Well

COPD and Massage

2009-12-13T16:31:00.004-05:00

Besides being part of a Pulmonary Rehab program, I have now been receiving Massage Therapy. Wow!! What a difference!

Massage and this particular Massage Therapist were recommended to me by a lady in my PR program who was using massage for pain issues. She said she felt so much better and could breathe better, and it really showed. So, skeptical me, I made an appointment with Terri.

I am not one of "those" women who go in for "Spa Days" and what I call all the "primping" sort of thing. That is what I thought massage was - like manicures and pedicures. Things that were okay to do, but I thought of as a waste of money. Luxuries, you know?

I mean, I would rather buy a pair of shoes...or a something for my grandson ...than waste the money on myself! Go out to lunch with a friend...anything else!

I have now gone five weeks in a row, and even my husband is very impressed with how much better I am doing. First session (he had to push me in the chair to even get me in there) I talked my way through - telling her all about my pain and what had caused it (injuries, previous surgeries) and I forgot to enjoy! The second time she had to wake me up! I gave in to the soothing feel of her hands and the background music. The ones since have been a combination. Undeniably I am much more relaxed and truly breathing better. The tension she has released from my body is amazing. I was so tight it's surprising I was able to breathe at all.

The other reason I was hesitant about massage is my own vanity. I have lost so much weight with my illness and as you may know our skin does not shrink as we age. Having gone from a well-toned, extremely active person who was able to feel proud of her body, to this shrunken fragile looking shell is humiliating and the thought of anyone seeing "all of me" in this state was frightening! I discovered she only uncovers the part she is working on, in very dim lighting, and never sees me completely undressed. What a relief! Had I known I might have gone sooner!!

I do not have a problem lying flat, if I do it in stages. I cannot go from moving around a lot to just lying down. Some people with breathing issues simply need to have their head raised a bit and Terri can work with that. Terri has a Nursing background and I believe that is one reason she is so effective for someone with severe COPD like mine (My FEV is around 19)).

Another concern I had was cost. Just how much was this "luxury" going to set me back??? Surprise...if I were still smoking I would spend about the same on a carton of cigarettes. This is a much better trade-off!

I would highly recommend massage therapy to anyone, male or female, with tension build-up, breathing issues, pain issues, or simply in need of a "gift for me" experience...because that is what it is for me - a gift. I can state that it is and will continue to be well worth the expense.

Ask around for a good therapist Terri tells me. Not all massage therapists are alike and word does get out about a good one. They actually appreciate knowing their clients have referred them. Wouldn't we all?

Enjoy your massage!

Peg

Motivation

2009-07-09T21:16:00.005-04:00

One of the hardest parts of rehab is staying motivated. I have been having trouble over the past month because I haven't been feeling so great. I had an infection and was on antibiotics and prednisone and just started another course of steroids with a slower taper. The doctor thinks that this time I might need to stay on a maintenance dose but I am hoping not to.

An exacerbation of COPD causes severe shortness of breath and that is just the hardest thing to deal with for me. Just going into the kitchen from my livingroom causes distress and the harder it is, the less I do it. The fear of the shortness of breath is profound. With COPD, the less you do, the less you can do.

This week is almost over, so next week I am going to get back to rehab while I'm on the prednisone and have some energy. I need to get over the fear and back to the exhilaration that I feel when I am doing something good for myself. If I stay stagnant, I get depressed and it's even harder to do anything.

I know that life can be good, and I want it back!

~Eileen

Pulmonary Rehab and ME

2009-06-01T17:40:00.004-04:00

Hi,

My name is Peg and I am part of the BBLW Team, telling my story about my introduction to Pulmonary Rehab.

I was first diagnosed with COPD in March of 2001. Never had heard of it before! I knew I got winded sometimes, and that I was a "shallow breather" like my Dad had been, but serious illness? No way! At times, the thought would wake me out of a sound sleep with "fear chills" thinking I was dying, and at other times I was just me. The doctor said "Quit Smoking". What doctor doesn't? But did it mean anything? No...just another scare tactic. But I went on the inhalers and they helped some and of course, I went right on smoking my pack a day.

Then, in June of 2002 I had a simple colonoscopy and my spleen was ruptured -- I nearly died. Who ever thought my spleen would have been attached to my colon? - duh! It's just not supposed to happen that way! So after losing about 3 liters of blood into my abdomen (I only had about 5, anyway) and being cut from sternum to belly button, I'm recovering without any physical therapy or rehab - no strength recovery help that way at all. I hurt no matter what I tried to do, so I became sedentary and began my ritual of reading a novel a day, smoking and drinking coffee all day. My once strong muscles completely atrophied and I lost a lot of weight and had absolutely no appetite.

In 2006 I had my first exacerbation of COPD. Into the Emergency Room - first and I hope last ambulance trip, by the way! By this time, I had developed such a horrible relationship with my Pulmonary Specialist that I could not even listen to him. I believed he was just an alarmist! I had to ASK HIM about Pulmonary Rehab (I had been reading about it). He felt he had told me about it, I felt I had never heard of it before, but I wanted to try it now. I knew I had to do something!!So, I made an appointment to go in and talk to Jane, who is the Respiratory Therapist in charge of our program here.

I walked in and looked at all those people on the various machines, even the ones wearing oxygen, and nearly charged back out the door! Believe me, I was petrified! No way was I ever going to be able to do this exercise machine stuff!! I just couldn't see how I could ever do any of it. (And I wasn't even on oxygen yet!!)

Pulmonary Rehab is the best thing I have ever done for myself! The education, training, and the friendships and bonding have helped me so much in the last couple of years. I truly believe I would not be here today without it. My "group" is as important to me as my family. They are my support family. They are what keep me motivated to keep on, and some days I need the lift of their caring more than I need the exercise, because there, we all know what we are dealing with. No recriminations, only caring support. I also know that my participation has helped to encourage others along the way. We are The A Team, trying to do the very best we can with what we have to work with, and Pulmonary Rehab is the means to do it with.

Before this turns into a book, I'll just say that if you have the ability and opportunity to get into a Pulmonary Rehab Group in your area, by all means, at least give it a try. I am positive you will not be disappointed at what you will learn. And it certainly helps now that Medicare helps with the expense of it. The beginning level is called Phase 2 (and we all wonder what exactly Phase 1 was...) and the rest of us are in Phase 3 (which we all have to pay for out of pocket), and that is for a lifetime!

Oh, and a P.S. After my father passed away, his Death Certificate stated that he had COPD! We, his 3 daughters, never knew anything about it. Shallow Breather, huh, Dad? Duh!!!

2009-06-01T16:02:00.001-04:00

PULMONARY REHAB AND ME

Hi all,

My name is Peg and I am part of the BBLW Team, telling my story about my introduction to Pulmonary Rehab.

Rise and Fall of My Pulmonary Rehab

2009-05-08T13:09:00.002-04:00

By way of introduction I am Darrell, part of the BBLW Team and I hope to be posting here occasionally. Thanks for reading.
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I'm happy to hear that many of us are active now in pulmonary rehab programs. These programs provide so much for us. The exercise is essential but the education, friendship and support are so important to keep us on an even keel. Plus they motivate us to do the best that we can.

Today was sort of like the rise and fall of a PR program for me. Our maintenance group is being moved to a new facility at the local YMCA and rearranged in several ways. The new program will require a YMCA membership and will provide a walking track and all the usual gym equipment and amenities. I'll go there on a trial basis one day next week to see what my wife and I think of the place. The PR side of the service will include one day per week scheduled visits with an RT who will monitor our status, performance and progress. The deal for me would be to drop my current gym membership and start a Y membership with a little bit of savings. The deal breaker for me is that (1) it seems few if any of my current maintenance group members will continue at this new venue and (2) I'm not prepared to drop my current gym friends who I have been working out with almost daily for the last few years.

The rise of my PR program started over two years ago when my doc referred me there for the full basic 8 or 10 week program. I learned alot and befitted greatly from that experience not only in knowledge and exercise but in finding a better acceptance of my condition and a level of comfort in dealing with the issues we as COPDers face. Following that "graduation" I went on to their "high performers" program which was to continue my own regimen and check in once a month for monitoring at PR. That program went away after a number of months and a recognition that most of the high performers were self motivated and likely to do well even without the program. The program was eliminated to make way for those who needed it more.

Then last year after a nasty exacerbation I was recommended for a lung transplant evaluation which required that I go back to rehab. That was good news for me and I was pleased to go back to my twice weekly PR maintenance sessions at the hospital. I established good relationships with the other patients and with the staff and PR became a part of my personal "wellness program" together with my three or four days each week at my gym. The lung transplant evaluation was completed and it was determined that I am currently functioning at a high level, regardless of my clinical results, and was not recommended for transplant now. So I continued PR because it seemed to be working for me.

Then another "good" thing happened when Medicare decided to cover PR expenses. Good for basic rehab where they now have a six to nine month waiting list for the program. I don't think there was much if any waiting list prior to the Medicare decision. Naturally with the expanded demand they have to maximize the use of the facility and the number of patients they serve. So here we are being rewarded for our success by being referred to a new program which as far as I can tell no current patients are signing on to yet. Who said "nothing succeeds like success"? It seems today that to be rewarded all you need to do is make loans that can't be repaid or build cars that nobody wants to buy. Maybe an occasional ponzi scheme or accounting fraud.......................

I am very grateful for the opportunities I have had to work these programs and the benefits I have received and I'm sure I'll do quite well in the future, with or without them, but I am concerned for most of the others in the PR maintenance who may not be self motivated. They need the structure and the commitment to the program, staff and to the other members who won't hesitate to say "Hey! where were you last week". For these people it has nothing to do with resource utilization and efficiency. I wish them all the best in their quest to keep on breathing.

Darrell

Improvement

2009-05-05T13:31:00.002-04:00

Week two back at pulmonary rehab has seen an improvement in my endurance with the exception of the treadmill. My hip is burning by the time I reach 5 minutes on it so I'll have to take that one very slowly.

I increased the NuStep time to 15 minutes, doing 1200 steps. I felt okay with that, with only a little pain in my right shoulder. I continued doing about 84 steps per minute.

The Upper Body Ergometer really burned my right shoulder and arm, but I stuck it out for 15 minutes. When I was done, I realized that the resistance was cranked up pretty high, so I'll pay more attention next time. I think I'll be sore tomorrow.

My blood pressure went from 142/79 after the TM, to 99/65 when I was done with all of the exercises. My sats when I started were 94% and when I was done, were 97%. I think it's pretty apparent that exercise helps the heart!

I left rehab with a sad heart. I just found out that Audrey, the 12 year old who got a double lung transplant 2 years ago, is very ill. She is now 14 and had 2 really great years. In the past couple of months, her PFT's have steadily decreased and her shortness of breath is increasing. The hospital in Boston has done everything that they can, including some experimental things, but have had no luck improving her condition. They have apparently opted not to retransplant. I can't imagine what her parents are going through right now - Audrey has made her own funeral arrangements and this must be a very difficult, if not impossible time for them.

If I ever needed to appreciate my own health status, this would be a good start.

~Eileen

Back at it

2009-04-29T18:57:00.004-04:00

I am finally springing out from winter. My time had finally come to return to Pulmonary Rehab yesterday. I had had a couple of false starts, but this week it was all systems go!

I had reservations about the long walk from the parking lot through the hospital to the rehab room, but I did it with just one stop by the Gift Shop to catch my breath. I think I have finally learned the wisdom of walking more slowly no matter what it costs me in pride. Pride is so overrated anyway.

Walking into the rehab room was like going home, I know it so well. From Rose, who runs the program, to the members who having been going for years - I felt very welcomed back into the fold. Rose always sets us up with water, and then it was time to work.

I went to the treadmill and set it for .5, but after about 30 seconds, I turned it up to 1.0 because it just felt too slow. I did not, however, last for very long. 5 minutes was my limit this time. By the end of it, my hip was burning so I stopped.

I was actually feeling pretty whipped by the time I sat down and had a drink of water, and I decided to called it a day. This was a huge step for me and I'm ready for more tomorrow.

~Eileen

Lesson Learned

2008-10-02T09:43:00.010-04:00

If I've learned one single thing over the past year, it's been to PACE myself. I honestly never realized just how much I needed to slow down in order to breathe better.

In the beginning, that is, before COPD, my normal pace was to walk fast. Anything I did was at a rapid speed, and I took pride in being able to get things done quickly. This was something I did without any conscious thought and there were innumerable times when someone would ask me if I always walked that fast. I'd always reply that I didn't realize that I was.

After COPD, I had the hardest time breathing because my pace hadn't slowed to accommodate the decreased lung function. After several years of stubbornly refusing Pulmonary Rehab, and being miserable with my declining health, I finally surrendured and let go of the denial.

I enrolled in Pulmonary Rehab in my area, and it made a huge difference in the quality of my life. I learned how to breathe out during exertion and breathe in for recovery. I learned breathing techniques and finally learned the importance of pacing myself to make my life easier.

Over the past year, I have been forced to move even slower, now at a snail's pace. The surprising benefit that I found is better breathing. It took broken bones to make me pace even more, and move even more slowly while doing things. I feel pretty comfortable doing the snail's pace, and I don't feel embarrassed as I had previously. I guess there's been that pesky pride thing going on that didn't want anyone to think I was less of a person because I had to go slow. I had to learn the hard way, as most lessons are learned, that pride never helped me breathe better.

I am learning on a daily basis, ways to take care of myself, and make lemonade out of lemons.

~Eileen

Journey to recovery

2008-08-29T10:00:00.000-04:00

When I get discouraged, I have to remember how far I've come from a year ago. I am able to do just about everything for myself now and rely only a little on outside help. For me, this return to independence has been very uplifting, and I have learned so much over the course of this past year.

I have always been comfortable with being by myself, and prized my privacy. However, I had to let go of most of my privacy by allowing others to come into my home to help me out. I had to leave my door unlocked so that they could get in, and people were coming into my space many times a day. My life became an open book. At first this was very difficult to deal with, but over time I became used to it, and even enjoyed the diversions during the day.

Allowing others into my world held some really great rewards for me. The first was that I had to reach out to others and actually ask for help. For someone as fiercely independent as I am, it didn't come easily, but it helped me to learn that it is not a sign of weakness to ask for help, and that people actually WANT to help and it gives them a good feeling in doing so.

I have a tendency to isolate myself and spend long periods alone with just my thoughts. This is a dangerous place to be. Not being allowed to isolate was another reward for me. When you're alone, and your thoughts tend to gravitate toward the negative, they can spiral downhill rapidly without someone to counter those thoughts. I have received enormous amounts of support from family, friends and therapists during this past year. Just having them around has been a constant source of light in my life. The big surprise for me was that I am not quite the loner that I thought I was!

I know I will continue to have challenges and disappointments on my journey to recovery, but I will also lean on the people around me and learn many more life lessons along the way.

~Eileen

Inching Forward

2008-08-08T14:29:00.003-04:00

It is now almost 3 months since surgery on my left hip. Progress has been slow but it has been building steadily.

I have many exercises to do daily and they include upper and lower body strengthening, stretching by using weights and therabands, and resistive exercises. Resistive exercise might sound funny, but I sit with my feet flat on the floor and my knees apart. I push in with my knee, while holding my hand against it, so that it is harder to do. I do this both pushing in and out. I also add some standing exercises where I hold the back of a chair and stand on tiptoes and back onto my heels. From that position, I also kick out my left leg and hold it there to a count of 5, then repeat 10-20 times.

I had permission to use a walker and crutches, but recently I have been gradually testing out a cane. I am VERY slow with it, and not very confident. I didn't realize how dependent I had become on the comfort of the walker. Funny, I despise that thing, and can't wait to get rid of it, but it holds security for me.

I have another appointment with the surgeon in a couple of weeks and I'll have an x-ray. I am hoping that this visit will confirm my suspicions that things are going forward as they should!

~Eileen

After Surgery

2008-07-05T17:58:00.000-04:00

This is a picture of a rainbow from my window at the rehab hospital, the evening before I left to come home.

I had surgery on May 12 to repair my fractured, impacted hip with great results. I had a bone graft done and a total hip replacement. I had to wait 9 months to get the surgery, and I am now feeling like it was worth the wait. When I stand now (although I'm not supposed to) I don't lean anymore! Both of my legs match in length again.

I don't remember much about the first several days post op. I do have a couple memories of them getting me out of bed and how heavy my leg felt and how much pain I was in. They got me out of bed every day and I was faithful about doing breathing exercises every 2 hours. By the 5th day they were ready to send me on my way and off I went to a rehab hospital. By this time, my hip was already starting to feel better than at any time since I had broken it!

My six days at rehab were great. I went kicking and screaming but soon found myself enjoying it very much. The staff made me feel welcomed and good about any progress that I made and there was lots of laughter and work. They even incorporated elements of their pulmonary rehab program into my PT and OT programs. This particular hospital actually has an inpatient pulmonary rehab program and if I should have an exacerbation and need pulmonary rehab, I will certainly do that.

I had PT and OT and nurse visits for about 3 weeks after I returned home. The nurse would check my vital signs and assess my suture line, which was healed by the time I got home. PT and OT did exercises with me and just a couple of weeks ago, put me on hold until I get permission to progress with weight bearing. So I spend about a half hour to 45 minutes each day doing exercises on my own.

So that is my journey so far. I hope to be walking by fall, but that's getting ahead of myself and I will continue to exercise so that I'm ready when the day arrives!

~Eileen

Where I'll be

2008-05-05T21:59:00.006-04:00

After 9 long months, I will be having surgery on May 12 to repair my broken hip. They will do a bone graft and total hip replacement.

I have just begun to feel better, walking better with crutches, no longer taking pain pills, & moving around more, so I am kind of sorry to give all that up again. But I will be very happy to be on the other side of this and I am looking forward to walking on my own again, hopefully within the next 6 months.

I have needed a lot of help over the past 9 months, and it was a good lesson to teach me how to ask and accept it. I have always been the caretaker, not the one needing it, and I was too proud to ask. Throughout all of this time, I learned that there were people who needed to help me as much as I needed their help. This has been a very humbling experience and I will always be grateful for the life lesson.

I am ready to fight to gain back what I've lost to deconditioning. My doc already has told me I have an excellent attitude and will do well surgically so it's onward I go!

I'll see you on the other side of this.

~Eileen

Where I have been

2008-01-13T11:35:00.000-05:00

I don't know where to begin. I haven't blogged and I haven't been online much in the past 5 months. I'm going to just give the very short version so I don't bore everyone to tears with my tale of woe.

In August, I tripped in my livingroom as gracefully as I knew how, and fell, breaking my right shoulder and my left hip. I walked on my broken hip for several days until I could no longer stand the pain and went back to the ER. The ER had never x-rayed the hip because they gave me so much morphine that it didn't hurt anymore! It had been 10 days and they discovered serious damage to my hip because I walked on it. It wasn't just broken, it was, well, traumatized is the best word I can come up with.

After a LONG separation from my home while I was in the hospital and then in rehab, my hip is still not healing. My shoulder is coming along okay. I walk with a walker and sometimes crutches but using the crutches just leaves me so much more breathless. I have been home since the end of October and have been out of my house twice since then. You can imagine my state of mind these days.

I haven't had surgery yet on my hip because there hasn't been any healing at all there. My orthopedic surgeon told me it would be about 6 months before something could be done. I will need a custom piece that they can fit a hip replacement to. I have been referred to a large teaching hospital near Boston, where I will see the head of the ortho department. That is on the 31st of this month, so I am hoping that they will be able to do what my ortho surgeon doesn't feel qualified enough to do.

I am very deconditioned and discouraged. I can get along okay in my apartment with help from my family and a great neighbor family who all pitch in so that someone is over a couple of times a day. There's no doubt that I would be in an institution were it not for all of them!

So that's where I've been this fall and winter. Of course this is all taking much too long in my estimation but I'm looking forward to being able to walk again and get back to rehab to get some more breath.

~Eileen

Pride followed by Grace

2007-08-25T17:50:00.001-04:00

I realized that there is more that I want to say. It is only marginally related to pulmonary rehab but I think it's important as I'm making myself healthier to continue to be independent.

My sister called me today. We talk almost every day but today impacted me so much. A few weeks ago, she came over to visit. Once she got here, she saw that my dishes were dirty all over the counters and the litterbox was overdue for a cleaning, and the floor needed sweeping. She said to me "Eileen, I know you don't want me to do this, but I am going to do it anyway." As I cried in the livingroom ( I really did, like a baby), feeling helpless and needy, she did all of my dishes and the litterbox and swept the floor. I tearfully thanked her and we went on to have a good visit. I had really needed help with my housekeeping and I was so very grateful for her help, but I was actually physically unable to ask her for it.

Today, when we talked, she told me that she would like to come and help me out some more. She told me that she had felt so good that she was able to do something for me, and even though I cried, it was too good a feeling not to do it again. SHE made ME feel like I was doing a favor for her. Go figure. She was sincere, too. She then told me if I could physically stop her, she wouldn't do it. We had a good laugh over that.

My friends at BBLW kept telling me that some people need to do for others, and my sister is one of those people. But I couldn't accept it while I was wallowing in selfpityland under the influence of toomuchprideism. I see where my inner work lies...

But I think I'm recovering now and I will look forward to having my sister come over and help me out. What a gift she has given me and I pray that I will have the grace to accept it.

Thursday, August 23

2007-08-23T19:25:00.000-04:00

I just wrote and then deleted two long paragraphs about why I didn't go to rehab today. I deleted them because there just isn't an excuse good enough not to attend rehab. 'Nuff said.

Tuesday August 21

2007-08-21T20:53:00.000-04:00

I was so happy to have my friend Gail with me today when I went to rehab! I had topped off my O2 tank, which I really should not have done, and by the time we got to the hospital, it froze up. I walked from the parking lot to the lobby with just a dribble of oxygen making it through the canula, and my O2 sats were 84%. I was kicking myself because topping off the tank is a sure way to freeze the works up. I usually use my own tank when at rehab, and I wanted to make sure that I had enough. So Gail had to wheel me into the rehab room. I laughed all the way because she was going 65 MPH to get me to some oxygen, and we were flying past everyone in the halls. Everyone must have thought I was on my way to delivery... When I stopped laughing, I told her that it was ok not to panic because just by being still and breathing, my sats would come up. We both had a good laugh talking about the looks on the faces that we sped by.

I got hooked up with a rehab tank and my sats came right up to 95%. I was feeling tight in my chest and achy all over so I figured I would take it easy today. I started on the Nu-step and did 20 minutes, and 1,700 steps. After a rest, I did the UBE. I did 18 minutes on that one. Then on to the TM. I did 10 minutes today at .9mph. Not very good, but at least I got that 10 minutes in. My blood pressure was good today, 124/71 and my sats ran around 95-96%.

If my chest still feels tight tomorrow, I will call my doctor and run in to have him listen to my lungs. Just to be safe. But I really think that it will be fine tomorrow.

See you Thursday!

~Eileen

Thursday, August 16

2007-08-16T19:42:00.000-04:00

The week winds down with me feeling good about how things are progressing. I am seeing good results in my daily life that are directly the result of rehab. I am able to move more freely with less shortness of breath, showering is so much easier, and when I'm moving around, I can use less oxygen. When I got out of the hospital, I was using 5 - 6 liters of oxygen to move around, but now I usually just use 4 unless I'm exercising.

I started out on the Nu-step and pumped away for 20 minutes, completing 1,800 steps on Level 5. Then I went to the TM and did 15 minutes on 1.0. After another rest, I went to the UBE and worked my arms out for 20 minutes. My O2 sats were consistently around 95-96 and my pulse didn't go over 120. My blood pressure was still a little high, at 144/88. If it's still up next week, I'll have to call my doctor to see if he wants me to start lasix, a diuretic, again. But I really think it'll be okay.

Once again, after rehab I felt so energized. I worked for several hours in the afternoon and while I'm tired, I still feel better than if I didn't go!

~Eileen

Tuesday - August 14, 2007

2007-08-14T17:57:00.000-04:00

Ahhh, the sweet smell of progress! Rehab has felt like it's been going at a snail's pace for the past few weeks; my recovery from pneumonia and this most recent exacerbation has been tortuously slow. But by the end of last week, and more so this week, I have felt better and more able to tolerate movement without disabling shortness of breath.

My friend Gail has been bringing me to rehab since I got out of the hospital and wheeling me from the entrance to the rehab room. Today I walked from the parking lot, into the hospital and to the rehab room by myself. I rested once about half way through. I also walked all of the way back to my car. How sweet it is!

I rested for a few minutes once I got to the rehab room and my BP was 155/87. This is pretty high for me, but I figured the effort of walking in might be the cause. I have a history of high blood pressure, but it's been down since I don't work full time anymore. It was a stressful job and my blood pressure has been good since leaving the job.

First I went to the UBE and worked my uppper arms for 20 minutes. I rested and headed over to the Nu-step. I worked my arms and legs for 20 minutes, and did 1,660 steps on Level 5. Up 5 minutes from last week!

Then on to the treadmill and I finally made it to 15 minutes at .9MPH. Sweet, sweet, sweet! 5 minutes on it had been torture for weeks and now at the slower speed, I am able to do better. This makes me feel so much better about how it's all going!

I can't say enough about being persistent and consistent with trying. I thought I might be in for a decline but it looks like I will be able to come back and even be better if I keep trying and be patient!

Progress, not perfection!

~Eileen

August 9, 2007

2007-08-10T18:02:00.000-04:00

While rehab didn't happen on Tuesday because of continued oxygen problems, Thursday was great. There was progress and my oxygen issues have been resolved.

I went for 20 minutes on the UBE without experiencing any muscle burn. For some reason, the time just seems to fly by when I'm sitting there peddling my arms. I'm relaxed and I listen to conversations around me and let my mind just wander wherever it wants to go.

Next was the Nu-step and I did it for 15 minutes, doing 1,200 steps on Level 5. I would probably gone 20 minutes, but there were about 11 of us at rehab and someone was waiting for the machine. For the lot of us there are 4 treadmills, 2 UBE machines, 3 recumbent bikes and 2 Nu-steps. There is also a gazelle and a rower and multiple bikes that are rarely used, at least in our class.

When I went to the TM, I decided to try it slower to see if I could do better and sure enough, I was able to get to 10 minutes. For me this is a huge improvement. I really think that now that I've discovered my speed for now, (1.2 - .9)I will be able to get to 15 minutes next week and who knows from there.

My O2 sats ran around 95-96%, my pulse would get up into the 120's, but the best was my blood pressure which ran around 103/64! My pulse did come down during rest periods and maybe by next week it will be lower still.

I can't wait to see how I do next week!

~Eileen

August 2, 2007

2007-08-02T14:06:00.000-04:00

This week has seen improvement! Maybe not much, but it all adds up.

I finally discovered at the beginning of this week that my marathon portable oxygen tank was malfunctioning. For almost a week, I thought it was me. I was short of breath much of the time and had some really terrible episodes of extreme sob when trying to do things. But much to my surprise, it was my tank, not me! It was delivering only a fraction of the O2 I need. I received another tank which is also malfunctioning. Hopefully, this will be reconciled so that I can continue my outside activities.

I didn't go to rehab on Tuesday because it was the last day of class for our current group. But on Thursday, I felt ready and was excited to be going. I only had the small portable Helios 300, but at rehab, I was able to use their oxygen. I walked in this time, rather than being wheeled in by Gail. I was short of breath, but my sats were around 94% when I checked.

First I did the UBE, and was able to do 18 minutes this time. I didn't even feel any burn in my upper arms or forearms, which was a happy surprise. My sats and blood pressure were good after this.

Then I went to the TM, but was only able to do 7 minutes before I pooped out. But it was better than 5 minutes!

The Nu-step was my next machine and I did 15 minutes, another improvement. At the end, my BP was 134/70 and my sats were 96%

It was hot and humid outside, so there weren't as many people there as there would normally be. I have discovered that there are a couple of other nurses in the group and we always have something to talk about. Libby was there with her great big laugh which I always enjoy and several others that are becoming such a big part of my life. Janet has broken a couple more ribs coughing, which is distressing to her. She's such a little bitty woman and I'm sure that has something to do with it. She also has osteoporosis which contributes to her fragile bones but she doesn't miss many rehab days and is an inspiration to me.

The foundation that I work for has obtained a grant to develop a program to bring free home visits to certain COPD patients and Rose, who runs the pulmonary program and I are very excited about getting it going. She will be a great referral source for us, knowing the rehab patients as well as she does.

I'm looking forward to next week and moving even more!

~Eileen

Week of July 22 - Tuesday and Thursday

2007-07-26T20:32:00.000-04:00

With the help of my daughter's mother-in-law Gail, I went back to pulmonary rehab this week. I am so grateful for her time and effort to get me into the building so that I can begin to recover from this most recent exacerbation. The long walk surely would have discouraged me from going.

Just entering into the rehab room was wonderful! Seeing everyone after almost 2 months was so comforting to me. The welcome back was sincere, and I had such a feeling of belonging that is hard to describe. I sat at the table and just looked around for a few minutes. Then I checked my BP, 159/92. This isn't good. My pulse was 98 and my O2 sat was 92%. The numbers showed that I wasn't in good shape but I had expected that. I have to start somewhere.

I went to the Nu-step and worked for 10 minutes on Level 5. I was able to complete 870 steps. My sats didn't rise above 92%. I was disappointed but I know that this will improve and I have to be patient. Next I tried the treadmill. I was only able to walk 5 minutes at 1.0mph before I was gasping for air. My oxygen was up to 6L but I just couldn't continue. Another disappointment. Again, my sats didn't rise above 92%, but at least they didn't drop either. I finished the session on the UBE, and did 10 minutes. I went to sit again at the table and I was really tired. This little workout was tough. But I felt that it was a good start and I wasn't as bad as I could have been, given the pneumonia that accompanied this exacerbation. My ending sats were 92%, BP 141/84 and pulse 96.

Thursday came and I was quite breathless in the morning. My shower was difficult and hard to complete. I think that the shower will be my guage to determine my progress. I hated showers and they were the single hardest thing that I ever had to do with COPD. But eventually they became easier and I was really enjoying them again. Once the shower becomes pleasurable again, I'll feel that I'm making good progress. It is amazing to me how quickly we decompensate during an exacerbation! I've bounced back very quickly in the past 2 years, but I think that this time the pneumonia was what did the damage this time around. I need to remember that it will take time and patience to work back up to my "normal" again. But I'm willing to do the work!

Today, Thursday, I started out with a BP of 150/83, pulse 72, O2 sat of 96%. Aha! A sign of improvement! I went to the UBE first and did 10 minutes. My O2 sat ran 96%. Next I attempted the TM, and could only get to 6 minutes. I was ready for a nap after that! My O2 sats ran around 95% for the 5 minutes I walked. I am taking this as a big improvement because last week, my sats would drop when I got up and moved around the house. This week they are staying up. I finished up on the Nu-step and did 12 minutes at Level 5. My sats were 96% and my pulse ran 96.

I am optimistic that I will be able to see an improvement next week, and I am determined to have a good attitude no matter what I accomplish! I am motivated and I am very fortunate to be able to exercise at all!

I learned today that our little friend Audrey, who had a double lung transplant, just had a checkup and her fev1 is 100%!!!! Way to go, girl!

See you next week!

~Eileen

The storm is over

2007-07-22T17:26:00.000-04:00

I haven't posted in a while, and as usual, when I let it go, there's lots of information to share. I've been sick with an exacerbation and pneumonia, but on the mend now.

I had been treated with an antibiotic (z-pack) and prednisone when I first starting feeling more short of breath, and started coughing up some green mucus. I was doing what I usually do, jumping right on an infection as soon as it started. I started feeling better within a couple of days, and figured the meds were working their magic. But after another week or so, I still didn't feel like I was bouncing back like I usually do. Instead of calling my doctor to let him know, I rode it out, thinking each day was going to be better. And sometimes they were. That was what was confusing me - some days I actually did feel good.

But by the time the 11th rolled around, I was feeling awful. I was so short of breath that even a step or two left me gasping for air. I couldn't cough hard enough to bring anything up and I was really getting scared. I spent the night before just praying to make it til morning and I promised myself that I would call someone to help me. I had been able to make it to work that week, but when I got home, I would just crash and burn. My chest hurt, my ribs hurt and I was barely moving due to the sob. I have no good reason why I didn't tell my doctor sooner. I guess I just didn't feel I was "bad" enough yet.

So on the 11th, I called my daughter and asked her to come take me to the ER. Even on the way to the ER, I was telling her that I felt guilty because I really didn't think I needed urgent care. Denial is a powerful thing and we can delude ourselves so easily. But I also think that in the back of my mind, I was remembering previous hospitalizations and being on the vent, and perhaps I was afraid of being so out of control of the whole breathing experience again. Not that I had any control at this point!

In the ER, the doc told me that he didn't hear much air movement. I had blood work, a chest x-ray, arterial blood gases and an immediate 1 hour treatment of albuterol and atrovent. When they do the 1 hour treatment, you have to be hooked up to a heart monitor to watch closely for heart problems. I also got a dose of IV steroids.

The next time the doctor checked my lungs, they weren't much better and I got the news that it would take many more treatments and steroids to break things up. I also had a pneumonia in my left upper lobe. The good news was that my blood gases weren't that bad, and at least I wasn't in respiratory failure. The doctor made it a point to tell me that while it was obvious that I have a problem with CO2 retention, my body was compensating pretty well. To that, I attribute the good breathing techniques that I've learned such as PLB and diaphragmic breathing. I thank God daily for showing me the way to Jane Martin's website and the education and support that I receive there daily.

I was admitted to the hospital and stayed there for 2 days, getting round the clock IV steroids and every 2 hour nebulized breathing treatments. By the second day, I was so loaded with these that my heart was pounding all of the time and I was so jittery! I also didn't sleep the whole time I was there. But I had promised my daughter that I wouldn't argue about going home too soon, and I endured.

I was released on Friday the 13th and settled in at home to recover. I was feeling better except for the pounding heart and of course I was still pretty short of breath with any movement. But I managed to overcome my aversion to asking for help, and allowed those around me to run errands and help me around the house. My daughter's mother in law is one who made it very clear to me that she "needed" to help and that it made her feel good to be doing something for me, and it got her out of the house for much needed breaks in her day. I gratefully accepted her help and she is going to be bringing me to pulmonary rehab until I'm strong enough to walk the distance from the parking lot to the rehab room.

I had a follow up appointment with my PCP this past Friday and it was very encouraging. My lungs are clear and heart rate is down. All of the labs taken in the hospital were good, like cholesterol. I am actually quite healthy except for my lungs. My fev1 dropped from 34 to 26%, but I'm hopeful that I can work my way back up a little. My doc took his time and we talked about so many things. We are convinced that my usual treatment plan is working well for me as I hadn't been hospitalized in almost 2 years. I know, too, that I need to be in touch with him sooner when I don't think things are right, in order to prevent a recurrence. I left the office with a big bag of free meds and a spring in my step.

I am starting back at pulmonary rehab on Tuesday, the 24th, and I am looking forward to seeing everyone and getting back to where I was pre-pneumonia and exacerbation. There's something about being in that room with others in the same or similar experiences and feeling all of their good energy that is so inspiring!

I hope if you have any questions or suggestions, that you will write in the comment section. I would love to hear from you.

Until next time!

~Eileen

Thoughts

2007-07-01T10:52:00.000-04:00

June was not a stellar month for me. While I tried to keep up exercising at home, I didn't make it many days to rehab. Oh, I had a million excuses not to go. All were legitimate, but you cannot imagine the guilt that I heaped on myself! Well, maybe you can. But I'm going to let the guilt go, and write about my feelings, Deep Thoughts, as Dee would call them.

I've been thinking a lot about the toll that COPD takes on us: emotionally, physically and financially. I feel that I am blessed and I feel that I am cursed. Most days more blessed than cursed. But it's a balancing act to maintain an equilibrium with illness and health.

I've always been a very active, healthy person. Even now, I am in good health , except for these lungs of mine. Oh, and my weight, but that's another story: I have terrible eating habits. Over the years, as my work life became more stressful, my exercising fell by the wayside. I was exhausted at the end of the day and I would want nothing more than to read a good book or watch TV to be distracted from what were becoming very draining days emotionally. I wish I knew then how important exercising is to both lung health and stress. But, I didn't, and I think that contributed to my lung decline. I certainly have to make exercise a major part of my life now, to be able to have a quality of life that I can live with. Exercise also helps me to beat depression, which is what I would surely be all the time if I didn't get my endorphins moving around that brain of mine.

So these are the kinds of things I've been thinking about. I miss going to rehab and plan to get back into the routine this month. Another balancing act is looming as I try to fit in the rehab program and my work schedule. I work part-time, and some months are busier than others. July brings a new class of nursing assistants for me to teach, and for them to teach me that I can still be a meaningful member of life, which is more blessed than cursed.

See you at the gym!

~Eileen

Week 18 - progress

2007-05-31T18:00:00.000-04:00

I am finally feeling back in the swing of exercising again. It doesn't take much to get me off track and I really have to dig deep sometimes to make myself go to rehab. But I know that being able to have a life means that I have to work hard for it so that has been my motivation. It's a rare day anymore that I stay home and don't go out and do something, even if it's just to go for a ride and enjoy the air.

This week I had a problem with my back. I was in a lot of pain on the treadmill and on Tuesday I was only able to do 5 minutes! I got a burning pain in my lower back and cramps in both my calves so I had to stop. I tried today to get on the TM, but the same thing started so I again stopped. I have a history of herniated discs and surgery, so I am hoping that a little rest and some gentle stretching will help it improve in a few days.

However, on Tuesday I did 15 minutes on both the UBE and the Nu-step. And today, I did 20 minutes on each! That included 1,750 steps on the Nu-step. I am a happy camper today because despite the set back with my back, I was able to make progress overall with my endurance times.

My blood pressure was a little high this week but it did come down after exercising. My O2 sats were good, between 95 - 97% and my pulse ran around 116.

The rehab room was very quiet this week. Only 5 or 6 people showed up for our sessions, but we had some great conversations about oxygen providers and insurance/medicare coverage. Next month there is going to be an open house for home oxygen users at our local oxygen provider's site. If you have any questions, feel free to let me know and I'll try to get them answered. I know I have questions about Medicare and liquid oxygen systems.

See you next week!

~Eileen

Week 17

2007-05-24T14:47:00.000-04:00

Here we are, another week gone by. I didn't go to rehab on Tuesday. For some reason, my breathing was awful, as I was trying to get ready to go. Throughout my shower, I was very short of breath, and couldn't seem to recover. It was getting late, and I was trying to hurry and that made me more short of breath and that made me more anxious and that made me more breathless - and on and on. I felt so guilty for not getting to rehab that day!

On Wednesday my breathing was much better and today I got to rehab okay. The hospital where the rehab is held is undergoing much construction and my main route in was not available. I trekked throughout the hospital corriders completely lost and it took me 15 minutes of walking just to find my way, and I used to work there!!

There were 11 of us today and it was a rowdy good time. Libby was back to her cheery self and I discovered that 2 of the ladies are also nurses. Janet is still having pain in her ribs and Cheryl still hasn't come back. The time flew by with all of the conversations going on and all of the joking and laughter that went with it.

I did 10 minutes on the TM at 1.2 and plan to be up to 15 minutes next week. I did 15 minutes and 1, 365 steps on the Nu-Step (still wishing I had one at home), and I did 18 minutes on the UBE. My goal is to get to 20 minutes on each.

There's a Better Breather's meeting next Tuesday after rehab and I think it's time for me to join. There are speakers each month and I hear that things are pretty lively there, too.

See you next week!

~Eileen

Week 16 - Thursday

2007-05-18T19:10:00.000-04:00

Thursday was a good day at rehab. I did 10 minutes on the machines and 1000 steps on the nu-step. Next week I'll get back up to 15 minutes on each. I'm going to try to increase by 5 minutes the following week so that I will be doing 1 hour of exercises each time I go.

I read an update on Audrey's care page and her fev1 is up to 81%! She is really doing so great. She is an inspiration to everyone to do our best! She's walking a lot and going to rehab. There's a walk this weekend to benefit Cystic Fibrosis. Rose, our therapist, is one of the walkers in that.

This is short and brief today. I am off to pump some iron - hehe - I mean to work with my 3lb weights...

See you next week!

~Eileen

Week 16 Tuesday

2007-05-15T17:51:00.000-04:00

I feel the effects of the inconsistencies of my workouts - more trouble breathing, inability to walk as far, lack of energy. So it is with renewed commitment that I went to my pulmonary rehab maintenance today.

After catching my breath, I took my BP and O2 sat. My blood pressure was up there at 178/91. Yikes! After the walk in, my O2 sat was 97% - confirming the theory that movement is GOOD.

I went to the UBE first, and did 10 minutes. My biceps and triceps burned! But it was good to get back into the swing of it all. As I was pedaling my arms along, I was checking out the room. It was filling up with new faces. My how things have changed in a week! We wound up with 9 people exercising today.

After a rest, I went to the treadmill and did 11 minutes at 1.2. I was struggling at 10 minutes, but I decided to push myself one more minute - sort of my salute to renewed motivation. After I was done on the TM, I sat at the table, had some water and visited for a while because I was waiting for the Nu-Step to be free. My BP was down to 125/74 and my O2 sats were 97%. Silently, I said way to go!

On to the Nu-Step and I did 10 minutes before I was completely wiped out. I was only able to do 880 steps. I just could not make my arms and legs go on any more. Back to the table for more rest and water and conversation.

I really enjoy sharing conversations with fellow COPDers and others who attend. I've said before, some have cancer and a multitude of additional illnesses, and their spirit always humbles me. I felt particularly bad for Libby today. She usually comes in with a big smile and lots of laughter but she was subdued today. I asked her if she was ok and she told me that she had been up all night with knee pain. (If that was me, I'd still be in bed whining!) She also told me that her brother, her last sibling, died on Saturday and she looked so sad that I could have cried. But she was there today. If I hadn't been motivated before, I was most certainly motivated now.

There was a sweet bouquet of flowers on the table today. Some lilacs, tulips and a couple others that I can't recall their names. But there were also some white bleeding hearts. They were so delicate and beautiful! Can you believe that I've never seen them in person? What a day!

Week 15 ~ Thursday

2007-05-03T14:34:00.000-04:00

Another good day at rehab! I consider them all good days, even when I don't perform as well as others, like today. I don't know why, but I just couldn't do as well as Tuesday.

I did 15 minutes on the NuStep and 1,330 steps at level 5. Not bad. Then I did the upper body ergometer and did 10 minutes with my upper arms at a burn when I finished. Hmm, not sure why, but maybe I overdid home exercises yesterday. Then I went onto the treadmill and set it a bit faster than Tuesday and had to stop at 10 minutes because my calves were cramping. I should have known better than to increase the speed until I had the distance back up to what it was. Lesson learned (yet again).

It is beautiful out today. It's a pleasant 65 degrees with a slight breeze and lots of sunshine - a wonderful day to be outside. Pansies are my favorite flowers and I saw lots of them.

Libby made me laugh so much today and Janet is still perservering despite her broken ribs. Cheryl, the lady with cancer, was supposed to come back a couple of weeks ago but we haven't heard from her lately. Audrey, the 13 year old with CF who got the double lung transplant is doing great. She exercises alone, later in the day, because of the potential of catching an infection. One of her favorite exercises is the hoola hoop! I used to be a master but that was long ago and far away! I don't even have a waist anymore to swing it on! LOL

See you next week!

~Eileen

Week 15 - Tuesday

2007-05-02T09:23:00.000-04:00

I skipped a week due to an intestinal virus and I'm so pleased that at rehab I did better than I had expected. I cannot stress enough how much consistent exercise, even just twice a week, has helped me. When I get sick, I don't get as sick as I used to and I don't decomensate as quickly so that when I feel better, it is not such an effort to get back in the swing of exercising.

I did 15 minutes on all of the machines. My O2 sats remained 96% throughout and my blood pressure was pretty stable at 130/70. When I walked to the rehab room, I was able to get there without stopping to rest somewhere along the way. If you'll remember, in the beginning, it took a stop or two to catch my breath as I walked from my car to the rehab room.

On the NuStep, I did 1,250 steps. This is fewer than I had been able to do but I am satisfied that I was able to accomplish an average of 80 steps per minute.

Janet, one of my exercise partners, broke 3 ribs last week coughing! She said she was just eating toast and inhaled a tiny piece of bread, which sent her into a huge coughing fit. Ouch, ouch, ouch!! But her doctor told her she should continue to exercise, (kudos to the doc), and God bless her, Janet did her best. Remember when we used to be put on bedrest for back injuries and other injuries like broken ribs? They've found out that staying active is a much healthier alternative.

I am looking forward to Thursday! See you then!

~Eileen

Week 14 - Thursday

2007-04-19T22:17:00.000-04:00

My little friend Audrey went to Boston this week for a follow up visit post double lung transplant. A couple of weeks ago her fev1 was 40%; this time it is 78%!!! Last weekend she went sliding in the snow, something she hasn't done in a couple of years. Her 13th birthday is next Sunday. What a great birthday present - the ability to breathe again. I am so proud to be one of her supporters!

It was tough going to rehab today because it was so nice out. The rains have stopped, the sun came out and the temp was in the low 60's. But I went and did 15 minutes on each of the machines. My O2 sats remained in the 97% range and my blood pressure is back down again.

I'm a little disappointed that I couldn't get to 20 minutes on the machines. It's been a struggle to get to 15 minutes and I guess my body just isn't ready yet for more. I hope by next week that it will happen.

A couple of the regulars weren't there for various reasons, but we still have quite a group. We have great personalities and they are fun to be around. That helps to make the exercise time go by when the machines become boring.

See you next week!

~Eileen

Week 14 ~ Reflections

2007-04-16T19:50:00.000-04:00

Well, it's been about three and a half months since I started back at pulmonary rehab maintenance. This has been such a positive experience that I have to share with you how much it has meant to me.

At the end of last year, I was staying home way too much. I didn't have the energy to go anywhere or do much of anything. I did what was absolutely necessary to get by and nothing more. I needed money and went to my part time job but wasn't really getting into it like I wanted to. I cancelled on a couple of classes because I didn't feel well. I was very depressed and thought I was quite the failure and thought alot about my life and how disappointed I was that it ended up with a chronic disease and nothing to do about it. I didn't stay in touch very well with family and friends and I even didn't attend a family wedding. I knew that if I could just get motivated, maybe there was hope for me to have a better life, but didn't persue it. I made half-hearted attempts to exercise at home but never followed through. I lived in my mind and that was a horrible mistake because I always saw the cup as half empty rather than half full.

When I was at my wit's end, I contacted the pulmonary rehab that I had attended in the past and asked if I could come back in the maintenance program. I didn't think it would be a problem but I was told that all vacancies were filled and that it would be quite a while before any spots would be open. I accepted this and it fed into my defeated attitude that I couldn't get better.

BUT, I got a call at the end of December that a new program was being added for the folks who were on the wait list to get pulmonary rehab maintenance. It was to start January 9. The news hit me like a ton of bricks - a second chance! I savored it. I looked forward to it. I saw it as a new beginning and a way to be accountable to someone or something like I couldn't be to myself.

The past 3 months have been slow going but with phenomenal results for me. I feel better, I want to do more, I CAN do more. The more I accomplish, the more I want to go forward. As I feel better, I get out more, and that has been instrumental in lifting the veil of depression that has clouded my mind for so long. I see family and friends again and I haven't cancelled out of one session in the last class of CNA's. I am more involved in life around me and want to do more to give back.

I cannot say enough for pulmonary rehab and an exercise program. For me, it was life altering. I look forward to each Tuesday and Thursday when I can join other people like me who need exercise to live. My comrades, mes amies, my lifeline to hope. I cherish the hope that I can be better, live better and be a better person.

I found all of this at pulmonary rehab!

~Eileen

Week 13 - Thursday

2007-04-12T20:31:00.000-04:00

I argued with myself for a long time before going to rehab today. It was sleeting and raining out and I wanted to go but was thinking maybe I shouldn't go out. But in the end, I knew I'd feel worse and be kicking myself for the rest of the day if I didn't go. So off I went and I'm glad I did!

Usually I have a hard time breathing when it's raining out but today wasn't too bad. I think it's because of the prednisone I'm on. But I was quite short of breath when I arrived and after a short rest, went to the UBE.

I did 20 minutes on the UBE!! Wow! What started out as a torture machine for me has turned out to be one of my favorites. It helped that Libby sat next to me. She is the most pleasant person I have ever met and she loves to talk! I love to listen to her and we wind up laughing and having a great time. So she can work by my side any old time!!

After a rest, I went to the Nu-step. I did 15 minutes and 1,380 steps. Just a little improvement on the steps but I just wasn't feeling the love enough to extend the time today. Next I went to the TM and did 15 minutes at 1.2 mph.

By the time I was done, I was exhausted! My calves were killing me and I was so tired. But my blood pressure came down from 170/90 to 147/70 during my time at rehab today. And my O2 sats stayed up at 97% throughout.

Between machines, I was talking with someone who didn't know about alldaychemist.com and I was happy to share information about it with her. She also didn't know about WalMart's $4 perscription program. Speaking of alldaychemist.com, I finally got my order yesterday and not a minute too soon! My order had been delayed in customs, but not stopped.

Keep moving and see you all next week!
~Eileen

Week 13 - Tuesday

2007-04-10T11:10:00.000-04:00

I am always amazed at how quickly a bug will hit me and make me feel so lousy but I am so happy that my body responds so quickly to meds. I am feeling much better this week and back at it!

Walking into the rehab room is always such a pleasure. It's funny, but I never felt this way before when I attended. It was always a chore to get over with as quickly as possible. This time around, I look forward to going, taking my time and really do enjoy it. I "get" the connection between exercise and breathing.

My O2 sats were low, around 91%, when I first got to rehab. But they gradually came up to 94-95% after working out. I imagine that they'll get better as the week goes on and I feel even better.

I tried really hard to progress a little this week, but just couldn't. Maybe Thursday I'll get to 20 minutes on the machines but for today, I stayed at 15 minutes on each. On the TM I continued at 1.2mph, on the UBE I did 16 minutes, and on the Nu-Step I did 15 minutes and got to 1,365 steps, which was a bit of an improvement over last week.

Audrey, our 12 year old double transplant friend, has been coming to rehab twice a week and is doing great. It's hard to believe that only 3 weeks ago she had such a major surgery! Let's all keep her in our prayers for continued recovery.

Cheryl, the lady who has COPD on top of cancer, has been out for a while. She started on a new chemo regime that left her pretty wiped out but she will be coming back this week. I am so humbled by her courage and determination. She is pure dignity in the face of her challenges.

See you Thursday!
~Eileen

Week 12 ~ Tuesday/Thursday

2007-04-07T21:54:00.000-04:00

This week I went to rehab both days and have maintained 15 minutes on each machine. I've increased the speed of the TM from 1 to 1.2. Considering how I felt this week, I have to give myself a pat on the back for making the effort.

I felt feverish and starting coughing alot as soon as I started moving around this week. By Thursday I called my doctor and got started on an antibiotic and prednisone and within 24 hours started feeling better.

This week was hard for me and I'm happy that I perservered and made the extra effort to do more than I thought I could. But it took all that I had to do it and left me feeling tired, depressed and frustrated. I hate that my mind says I can do things but my body just doesn't cooperate. I was so angry at my COPD this week when I couldn't walk without getting short of breath and it was so awkward dragging my tank around because I was so clumsy with it for some reason.

But I calmed myself down, cut myself some slack, asked for help with chores around my house, and now that I'm feeling better, I'm feeling better about everything around me. A few good cries and a few temper tantrums didn't really hurt any and probably helped some, things got done, and I'll be ready for a new week. And definitely ready for a new attitude. I hate feeling so down and defeated! That's really not my nature and it takes so much more effort to support that than it does a positive attitude.

~Eileen

Week 11 ~ Thursday

2007-03-30T11:30:00.000-04:00

I am red-faced as I report that I didn't go to rehab on Thursday either. A whole week. I really had to weigh my options this week and it was very hard to balance what I needed to do. But I did what I did and next week won't be as hectic and I won't have to make such hard choices. Right now I can honestly say that at least I know how important exercise is in my life. I guess I wouldn't agonize over missing it, if I didn't know that it is allowing me the ability to do more with each passing week.

We just finished writing a grant to get some funding to develop a pilot program to provide free home visits for patients with COPD (Chronic Obstructive Pulmonary Disease) and CHF (Congestive Heart Failure) who fall between the cracks of Medicare, Medicaid and private insurances. I am so excited about it and hopeful that with this program, we will be able to provide important education and support to allow patients to be more proactive in the management of their illness and increase the quality of their lives.

Audrey has returned home from her double transplant and is doing very well. She is just 12 years old and a hero to all of us who know her. She and her family have been through so much and to now be on the other side of the transplant after waiting for 4 long years is so heartwarming! Go Audrey!

I'd like to mention here that your comments are welcome here. I would appreciate any comments, suggestions, support, questions etc that you would like to make! The more the merrier!

See you next week!

~Eileen

Week 11 ~ Tuesday

2007-03-28T11:16:00.000-04:00

OOPS! I did it again. I overextended my day with work and appointments and didn't make it to pulmonary rehab. Again. The last couple of weeks have been hectic and since I need money, I'm torn about this. But work just cannot remain an obstacle to getting my exercises in.

It's a viscious circle for me. It's due to the renewed commitment to my health that allows me the ability to do more work. Now, due to the increased work and related researching, meetings and classes, I am having trouble fitting in the thing that I feel is so important. But work and purpose are important to me too.

I didn't sleep a wink last night worrying about this and how to handle it. I can't rest today because I have a class to get ready for, I have a doctor's appt, and class tonight. Tomorrow I WILL go to rehab. Period. I've had this conversation with myself before.

Geesh. I wish the oxygen guy would get here so I can take a shower. If he doesn't get here soon, I'll be rushing to take it and we all know what happens then.

I never had these problems when I just sat around on the couch with the remote in my hand...

See you Thursday!

~Eileen

Week 10 ~ Thursday

2007-03-24T17:27:00.000-04:00

I finished off the week doing 15 minutes on each machine. Next week I will work up to 20 minutes. My blood pressure has been good and O2 sats as well. I'm looking forward to 'kicking it up a notch'. I've also started working with therabands at home and they are really fun!

We had some rain and my breathing was worse before and during it. It is so frustrating to know I can do something and the weather dictates whether or not I can do it on any given day. We are expecting some snow tonight and I just can't do anything without getting excessively short of breath. Tomorrow will be better.

Audrey is managing well without oxygen and they are working on discharge planning with her and her family. She takes all of her meds by mouth now and hopefully will have the last of her chest tubes removed soon. Go Audrey!!

See you next week!

~Eileen

Week 10 ~ Tuesday

2007-03-20T17:46:00.000-04:00

Today I had a meeting to work on program development for our CNA class, and although I said that I had to leave early for rehab, the time ran on and before I knew it, it was too late to get in exercise. I am very disappointed in myself. As I've said before, work was always my excuse for not attending in the past and I didn't want it to ever be a reason for not going again. I plan to work twice as hard this evening to make up for it. I have weights and I have now got therabands so I have no excuse not to work out at home.

Our little friend Audrey is doing well and they think she might go up to a regular floor this week. I was doing a little research because I really don't know alot about cystic fibrosis, and the sad part is that she will still have the disease and these new lungs will last only about 4 years. The image at the top of the page is cystic fibrosis. I know she will be enjoying her new breath but my heart hurts that this will become something that she will have to endure again. What a brave child!

Week 9 - Thursday

2007-03-16T19:13:00.000-04:00

I am a walking list of excuses. I can find an excuses to never do anything good for myself and I'm not afraid to use them. BUT, lately I am fighting back. This morning, I thought that I needed to spend my rehab time working on a project for work but realized that work had been my excuse for not attending pulmonary rehab so many times in the past. Time for a change! I overrode my own decision and went to rehab and I'm so glad that I did.

I finished out the week by continuing my progress. I'm doing 15 minutes on each of the pieces of equipment that I use. My oxygen sats remained at 97% and my pulse ran around 116 during exercise. My blood pressure is VERY good at 110/70.

I am going to go for 20 minutes on each next week. I feel really good and the more I do, the more I want to do. I have never felt such a sense of well being before. It took emphysema and a fight for my life to do it. I have been consistent and motivated and it has rewarded me greatly with a renewed lease on life. People around me see it and comment about it. I am so grateful for the opportunity to have another chance on making my life better!

See you next week!

~Eileen

Week 9 ~ Tuesday

2007-03-14T11:21:00.000-04:00

It was back to rehab again today for me. I thought I did very well even though I had to squeeze in the session during a very busy work day.

I added another 5 minutes to the treadmill, so my time is 15 minutes now at 1.0 mph. When I get to 20 minutes I am going to start adding some speed to that walk!

I also went up 5 minutes on the Nu-step to a total of 15 minutes. Today I was able to get to 1,200 steps. When I get to 20 minutes on this, I plan to increase the work load.

I remained at 10 minutes on the UBE.

Throughout the exercising, my pulse ran in the 120's. My blood pressure remained pretty constant around 144/70 and my O2 sats ran 97%. After the exercising, my O2 sats remained at 97%. I am pleased with my progress and look forward to more.

Little Audrey is doing well. She has been getting up to a chair, her vent is out and one of her chest tubes is also out. They are keeping an eye on a small pneumothorax, but she is stable and her pain is being managed very well. Please keep Audrey and her family in your prayers.

~Eileen

Week 8 ~ Thursday

2007-03-08T15:48:00.000-05:00

I got some wonderful news today at rehab. Audrey, the 12 year old who had been waiting over 4 years for a transplant, got 2 new lungs this week!!! (see day 2 post) Way to go Audrey! So far she is stable but right after the surgery, which lasted about 12 hours, they had to put in a temporary pacemaker for an irregular heartbeat. Please keep her in your prayers for a speedy recovery. Audrey had just been 70 pounds when she had the surgery, and she had become quite debilitated. I am so happy that her long wait has ended and I pray that she will finally be able to laugh and dance and breathe well with this wonderful gift.

My workout was the same as Tuesday. I had hoped to increase the time, but my body wasn't ready yet. My pulse ran around 110-120, my BP from 144/82 to 126/67, my O2 sats stayed at 97%. I look forward to attempting more next week!

~Eileen

Week Eight

2007-03-06T15:05:00.000-05:00

Today was my first day back to rehab after 2 weeks of being away. I have to say, just sitting at the table when I got there, felt so good! It was where I was supposed to be. I got a rousing welcome back from everyone, which felt awesome, too.

I might suffer tomorrow from today's workout, but it doesn't seem that I lost a whole lot of ground in my 2 week absence. I was able to do almost what I was at when I left. My pulse ran much higher during the exercise, but not dangerously so.

My BP was 125/76 when I got there, and my pulse was 126. The walk in had been tough. I stopped 2 times on the way in to catch my breath. My O2 sat was 97%. (Oxygen at 4L continuous for exercise). I rested about 10 minutes before starting.

First I did the UBE, and was able to do 10 minutes, which was where I left off. My pulse ran around 122 and my O2 sat 95%. I have always detested this piece of equipment, but today the time went by in a snap and I didn't dislike it so much. I hope I can like it someday!

Next was the TM. I did 10 minutes at 1.0 MPH. My pulse ran in the upper 120's to a high of 132. My O2 sat was 96%. I had been up to 15 minutes previously so maybe Thursday I will try for that again.

The last one I did was the Nu-Step, which I love. I worked 10 minutes at Level 5; the last time I did it I did 15 minutes. Again, perhaps Thurs I will work up to that again. I only was able to do 665 steps, a far cry from the 1500 I was previously able to do. But it's progress, not perfection, that counts. My pulse ran in the 120's; O2 sat 96%.

By the time I was done, and resting for the last time before leaving, my O2 sat was 96%, Pulse 110 and BP 109/68.

Of course, during all this there was constant conversation. Cheryl, who has cancer as well as COPD, hasn't been attending because she just started another round of chemotherapy. Her wonderfully positive attitude had been such a blessing for all of us and we hope she comes back soon.

I love the conversation that goes back and forth among all of us. It helps the time go by and making new friends is always a good thing for me. I feel so comfortable there and I'm so happy that I didn't have as much of a setback as I had thought.

~Eileen

Week Seven

2007-03-04T10:25:00.001-05:00

Unfortunately I didn't make it to rehab for a second week. I was feeling better but coughing like crazy and that left me breathless and exhausted.

I have been keeping up with sitting exercises and upper body exercises using my weights but I really feel the difference from not attending rehab. So even if I have to go and just sit, I will still go to pulmonary rehab on Tuesday! It is very disappointing to see the decline and I hope it doesn't take long to build back up.

~Eileen

Week Six a Bust

2007-02-25T17:56:00.000-05:00

Unfortunately, week six didn't happen for me at pulmonary rehab. I came down with a chest infection. As soon as I started coughing up funky stuff, I started antibiotics so within a couple of days I was feeling much better.

Additionally I took a nasty spill on the ice on Tuesday. Ouch! It hurt my pride, of course, more than my body, but I was quite sore for several days. I'm getting back to normal (well, what passes for normal!) and plan to jump back in on Tuesday!

~Eileen

Week Five ~ Thursday

2007-02-15T18:02:00.000-05:00

See Maxine. Maxine doesn't like to exercise. I hope that's not a cigarette in her hand! Poor Maxine would have to change her whole lifestyle if she developed COPD. And you think she's cranky now!

Yes, that was me just a couple of years ago. Exercise has really never been in my vocabulary. I would join a club or gym but never made it past a month at any time. I thought, well I work hard and that should be enough. Even when I was first diagnosed with COPD, I went through Pulmonary Rehab, twice, as a matter of fact. After each 6 week session, I would join the maintenance program and gradually I would slow down and eventually not go at all.

I have finally gotten the exercise/lung connection. After 8 years of huffing and puffing first without oxygen and even with oxygen, I am trying to make the best of the body I have. And it takes work to do it, hard work and commitment. I have finally made the commitment to be better and this is exciting for me. I am now waiting for a spot to open up in the class that is 3 times a week.

Today, an old habit reared its head: I didn't want to go out in frigid weather and go to rehab. I almost talked myself out of it but somehow reason won out and I thought of what I could be losing if I didn't go. I went.

I was very short of breath walking to the rehab room. I've been pretty short of breath for the past couple of days and I'm not sure why, but I was able to do all the exercises.

On the TM, the Nu-Step, the UBE and the recumbent bike, my pulse ran around 110 and my O2 sats were 94-95%. That's funny, because at home I have been having trouble maintaining sats over 90 with my usual liter flow. At rehab, though, I keep my O2 on 4L continuously. At home I usually use the demand settings so maybe it's time to go continuous with it at home too. I plan to call my pulmonologist before my sessions next week.

I would say that overall, this week I maintained. I'm looking forward to making some more progress next week.

~Eileen

Week Five ~ Tuesday

2007-02-13T21:11:00.000-05:00

Today I had to make one stop to catch my breath on my way to the gym. I was disappointed in myself but there is a change in the weather coming and I think that is to blame for the increased shortness of breath.

I arrived at a very deserted rehab room. There were only 3 of us and a therapist. So many of the regulars were not there and I wonder where they are. I think alot about Cheryl, who is fighting cancer as well as COPD. She has such a fighting spirit and I hope she is not sick. Maybe everyone is getting ready for the 12 inches of snow that we are expecting tomorrow.

I ended last week feeling overwhelmed. My kitchen was being done over and I had packed and hauled everything out. I am thrilled with the results and now look forward to putting everything back now. I will take my time and do it when I feel spurts of energy. I have finally learned that Rome wasn't built in a day...hehehe.

When I arrived today my BP was 167/80, Pulse 93, O2 sat 95%. I maintained the 4L continuously that I used to walk in. At rest I turn it down to 1.5L.

I walked 15 minutes on the treadmill at an even level. My sats and pulse ran a good 95% and my pulse ran around 100. I checked them every 5 minutes on my pulse oximeter. I am so pleased that I was able to maintain a constant level with the activity.

I did 15 minutes on the Nu-Step, and my total steps were 1,555 at Level 5. My pulse ran around 101 and my O2 sats were 96%.

I did 12 minutes on the UBE, 6 minutes forward and 6 minutes backward. I increased the time from 10 to 12 minutes and although my upper arms were burning, I didn't mind the time. Finally. This machine was a torture for me at first, and now I can tolerate it. Yeahhhhh!

By the time I was finished, my BP was down to 124/74 and my O2 sats were 96%.

While these are baby steps, they are monumental for me. This is the first time that I have commited to a plan and I really look forward to besting myself each time that I go. Now, that's progress.

~Eileen

Week Four ~ Tues and Thurs

2007-02-08T20:46:00.000-05:00

Hello everyone, and welcome to week 4 of pulmonary rehab maintenance! Overall this has been a good week, although I'm ending on a slow note. Things were great on Tuesday but by Thursday my resources were pretty much depleted. But I did attend and get exercise which is a great new insight for me into my fortitude!

On Tuesday I did all of the machines and my blood pressure was down. When I left it was 120/73. I did well on all of the machines and my sats ran 95-96% with my pulse running from 101-113. My resting pulse was in the 80's and while I felt this was an improvement, the therapist said that it still needed to be lower.

At home I have been packing and moving my whole kitchen in anticipation of a new kitchen. I did it all by myself and am sure that what I've gained in pulmonary rehab helped me to accomplish this! I was packing and lifting and hauling to beat the band!

But by Thursday, today, I was wiped out! I almost didn't go to rehab but decided that it would be a very poor decision and went. Although I didn't do as well as I have been, I was proud of myself for trying. In an hour and a half, I got 45 minutes of steady exercise in and felt better for that.

Tonight I am thoughtful and pondering the fate of one of my exerciser buddies, Cheryl. She has COPD but in addition, she has terminal multiple myeloma which is a cancer that affects the bone marrow. She had a bone marrow transplant about 5 years ago which allowed her a better quality of life until recently. From what she told me, the cancerous cells attack areas of her body which causes her much pain. Right now, they are producing tumors on her left shoulder. But she comes every Tues and Thurs and has a wonderful fighting attitude and great sense of humor. I am so inspired by her. She deals with so much more than I do and continues to plod on and hope for the future. She says she will not go out without kicking and fighting. I really think that she will beat the odds. What a fighter!.

See you next week!
~Eileen

Week Three - Thursday

2007-02-01T14:20:00.000-05:00

Today was the first day that I walked all the way to the rehab room without stopping and without much shortness of breath. What a victory ! I also added some time to some of the exercises and did all 4 machines. I cannot believe that I forgot to do the recumbent bike on Tuesday! I mixed it up today for a change and to keep it from getting boring, a dangerous state for anyone exercising because that leads to disinterest.

Before I started, my BP was 169/90, Pulse 100, O2 97%. By the time I was finished, my BP was 140/76, P99, O2 96%. I use my O2 at 4L anytime I'm moving around.

First I went to the UBE, upper body ergometer, and finally got up to 10 minutes! It isn't the torture it used to be either and that makes me so happy!

Next was the recumbent bike and I cycled for 8 minutes, up from 6 the last time. It's starting to become more natural. The first few times I felt like I was really jerking my legs.

Then the treadmill for 15 minutes at 1.0. Again, I've added some minutes to this one also. Maybe next week I'll a little more spead to it. But for today, it felt really good to get to 15 minutes.

Finally I went to the Nu-step. I just love this piece of equipment! I've got a pretty good rhythm going on this. I did 15 minutes at Level 5 and was able to do 1,525 steps. Maybe next week I can go for 20 minutes.

I should mention here that everyday at home I do breathing exercises for about 15 minutes about 2 or 3 times a day. I do diaphramatic breathing and sometimes use a P-Flex, an inspirational muscle trainer. I know I should use that everyday and I have no good excuse for not using it, so I am going to have to work on that! I also work with 3lb weights every other day for arm strengthening.

So my endurance is better and my blood pressure is better and I am so excited for what more I can do! See you next week!

~Eileen

Week Three

2007-01-30T15:54:00.000-05:00

Today was a really good day at pulmonary rehab maintenance. I was able to walk quite a distance to the rehab room and was only a little short of breath when I got there. This shows me how much the exercise is helping and motivates me to keep trying.

The picture to the left is an upper body ergometer. This strengthens the upper arms and is the piece of equipment that I am still only able to achieve 8 minutes on. Next week I'm pretty sure I will be able to increase to 10 minutes since I am working with 3LB weights at home on the days I'm not at rehab.

I walked for 12 minutes on the treadmill at 1 MPH and by the end of this week I will increase to 15 minutes. When I am comfortable at 15 minutes, I will increase the speed.

I used the Nu-Step for 15 minutes and did 1550 steps at Level 5. I try to stay steady at about 100 steps per minute and by next week I will try to do it for 20 minutes.

When I started today, my BP was 156/91, O2 sats were 93% and pulse was 115. By the time I left, my BP was 143/79, O2 sats 97% and my pulse was 100.

~Eileen

Thursday Rehab

2007-01-25T15:25:00.000-05:00

I had to park quite far from the entrance for rehab so I got some walking in first thing today. There's a lot of construction going on. Once in the hospital, I did my usual stop to check out pictures on the wall or whatever was available to look at so I wouldn't be conspicuous while catching my breath. The way that I usually enter has the gift shop with a wonderful array of things to look at.

When I got to the rehab room my BP was 138/76, Pulse 95, O2 sat 95%. I went to the treadmill first and did 11 minutes at 1.0. I remember someone saying that the first 5 minutes is always the worst and everything after that gets better. I have to agree.

After a rest I did the Nu-step. I increased to level 5 and did 15 minutes, managing to do 1540 steps. Thank goodness I wore a short sleeved shirt because I worked up a sweat this time. When I was done, my BP was 132/75, P101, O2 96%.

On to the UBE (ergometer) for 8 minutes at level 2. This remains a torture for me and my arms but I know it will help me to build up those muscles so things like lifting and carrying things such as groceries will be easier.

Today I added the recumbent bike. I have been watching other people do it and frankly thought to myself "this is a piece of cake". HA! I was only able to do 5 minutes on it because my upper legs were crying like babies for relief! That is the LAST time I underestimate a piece of exercise equipment.

At the end of my workout, my BP was 138/76, P95, O2 95%. We had a new lady join us today and by next week we'll have a couple more. It's nice to sit between exercises and chat about things. There's always a pile of internet jokes that someone brings in for us to read and Rose always provides us with never-ending ice water. I don't know what made me think that I wanted to exercise alone...this is infinitely better.

~Eileen

Week Two

2007-01-23T19:19:00.000-05:00

Well here we are, a new week and another new start. I was afraid I had lost ground because of missing pulmonary rehab last week but fortunately, that wasn't the case. I was able to keep up with where I left off, and even add a tiny bit. Besides the 3 machines that I use now, on Thursday I plan to add another to strengthen my legs even more. My calves were burning today after walking around a store for 15 - 20 minutes after rehab today, so I want to do more to get them in shape.

I didn't struggle as hard as I did in the past walking to the rehab dept today. On arrival, my numbers were: O2=96%, Pulse=101, BP=147/81. I wasn't as short of breath as previously.

I did the treadmill first; 11 minutes at 1.0 and 0 gradient. While on the TM my sats ran between 92-93% and my pulse ran 115-118. I believe my pulse was higher the last time I did the TM. And this time I added one minute - doesn't seem like much, but felt like a small triumph. When I was done, my O2 was 94%, P106 and BP 136/79.

On to the Nu-step for 15 minutes at work level 4. Last week I was on level 2 or 3, I think. However, today I spent a few minutes really positioning myself and the machine to get maximum workout with a level of comfort. It worked out really well and I did 1500 steps, meaning I did 100 steps a minute. When finished, I was at 94% O2, P110 and BP 116/73.

Next was the UBE. I increased it to Level 4 and again did 8 minutes total. After that my BP was 130/74, P118 and O2 95%.

I felt pretty charged up after the session. There are only 6 of us in this session and there's a good camaraderie among us. I am very fortunate to live in this community where I can do this for only $30/month. I've been reading on EFFORTS that some people are paying between $80 - $100 per SESSION! And sometimes more, which is just outrageous.

Already I'm feeling better and stronger. I feel really committed to doing this on a long term basis and with feeling better so soon after starting, that's just frosting on the cake!

~Eileen

Just a little hiccup

2007-01-18T00:22:00.000-05:00

I think I have the curse of the blog...last week I was fine and this week I'm sick. But I'll post anyway.

Last week, as I said, I felt really good. I had seen my pulmonary doc that week and we were happy with the way things were going for me. But on Friday in class, I started with a really bad headache and my blood pressure was very high. After class I went to my PCP for reasurrances that I wasn't going to stroke out. My blood pressure had come down a little and we decided that I'd go back on a diuretic for a while although there was no swelling in my feet or ankles. And I did get my reassurance that I wasn't stroking out.

Then on Monday, I woke up severely short of breath, my feet were like footballs and I felt awful. I talked again with my PCP and I doubled up on the diuretic, and he added prednisone and albuterol by nebulizer. No fever and no discolored mucus, so no antibiotic.

I started feeling better today and tried to do some things around the house. That just left me coughing so hard that I was drenched with sweat from the effort and crying in frustration. I was going to try to go to rehab tomorrorw but now I think I'll just take it easy until next week.

I am breathing better and know by next week I'll be able to continue where I left off at pulmonary rehab. This just firms up my resolve to be a better me! I'll leave another post in a day or so just to update on how I'm feeling.

~Eileen

Day Two At Rehab

2007-01-11T19:21:00.000-05:00

Sore as I was, I made it through another day at rehab. My blood pressure went down, and my O2 sats were good, and for that I'm thankful. It was a good session and I hung out longer than I needed to, having good conversation with the other participants and Rose. Between machines we hang out at a round table catching our breath and talk about COPD, oxygen and all sorts of things.

I did learn that Audrey, a 12 year old who has cystic fibrosis, is still on the list for a transplant. I met her last year while attending pulmonary rehab and was blown away by her courage and spirit. Since I've seen her, she has declined somewhat and is now on 8L of oxygen during the day and 10L at night with a Bi-Pap. She's been on the tx list for 4 years because the only state that her insurance will allow is her home state. She has been ok'd for a live donor lobe transplant, with her mom and a teacher as donors, but the doctors won't do it until she absolutely needs it (so as not to put 3 people at risk at the same time). So she goes to school and still attends rehab and still is smiling.

When I first got to rehab today, I had to sit a bit to catch my breath. I had to park farther away and it took a toll. BP: 168/78 Pulse: 120 O2 Sats: 94%

I did the treadmill for 10 minutes at 1.0 and it wasn't as bad as Tuesday. I was able to go longer. When I finished, I was at 96% O2 Sat; 122/73 BP; 112 Pulse.

Next was the Nu-Step. I went for 15 minutes at work level 3. I had to decrease the work level from Tuesday because I had adjusted the seat to better work my legs and it was HARD once I was actually in the right position! When I was done, O2 sats were 96%; pulse 114; BP 141/77. I really felt the workout in my thighs this time. In the 15 minutes I did 1,340 steps. The picture at the top of the page is the Nu-Step machine.

Finally I did the UBE, or ergometer, which works on the arms. I did 8 minutes again, 4 forward, and 4 backward at the same resistance. This was pure torture for my arms!! I can still feel that soreness in my biceps and triceps! My mom used to use "Aspercreme" for arthritic pain - I wonder if they still make it; in the meantime, I'll take some ibuprofen! Please excuse the whine and pass the cheese, please...

When all was said and done, my sats were 95%; pulse 118; BP 141/71. My pulse was running in the high 120's while doing the exercises. I have a normally high resting pulse, in the 80's to 90's, which is because I'm out of shape.

I'm so glad that I've finally gotten back into the rehab and look forward to next week! I really think, no, I know I feel better already! Breathe better, everyone and see you next week!

~Eileen

First Day Back

2007-01-10T20:07:00.000-05:00

So yesterday was my first day back to pulmonary rehab maintenance. It was great to see Rose and there was another lady there that I remembered from previous classes. She, too, was returning after a long hiatus. There were several others there, too; some with oxygen, some without.

I started out getting baselines of my O2 sats, pulse and blood pressure. They were: O2 sat: 96%; pulse: 111, BP: 162/93. I had walked in with my O2 at 4L and kept it at that because I was going to go right to the machines. I don't take anything routinely for high blood pressure, but when I have swelling in my feet, I take lasix, which also helps my blood pressure. However, on this day, I had not taken any lasix.

I went first to the treadmill. I managed to do only 6 minutes at 1.0. My calves were doing the burn and I just couldn't go another minute. I went back to the table to rest and my numbers were: 92% O2; 126 pulse; 129/77 BP. I have to say, I was a little disappointed in myself that I couldn't do more.

Next was the Nu-step. This works your arms and legs while you sit (I like this one). I did 15 minutes at work level: 5. I felt alot better about this machine but my arms really got a workout and boy, were my upper arms were burning! When I went to sit down, my sats were 94%; pulse 113; BP 117/77. So this was a much better blood pressure. I was anticipating that at the end of the session, my BP would be even better.

I then went to my nemesis: the UBE(ergometer), where you sit and 'bicycle' your arms back for half the time, and then forward for the other half. OH MY GOODNESS! I just dread this piece of equipment! Even though I have been working out with weights (albeit sporadically) this just KILLED me. I did 5 minutes forward and 5 minutes backward at level 2, which is 30% resistance. Oh the burn.....the burn...I've never been so happy to be done with a piece of equipment! BUT, although I hated the machine, by the end, my O2 sats were 95%; and my BP was 116/75.

Thus went my first day back at rehab. Already I feel better just by going. And I'm looking forward to tomorrow's visit. See you back here tomorrow!

~Eileen

Pulmonary Rehab Maintenance

2007-01-09T21:09:00.000-05:00

Hi everyone!

Kasey asked me to post my experience with pulmonary rehab as I've just begun (again) a maintenance program. Kasey's doc still hasn't cleared her to continue, so I'll share my experiences until she's back at it, which we all hope is very soon!

My name is Eileen and I'm a moderator on the Breathing Better Living Well communitity forum. I was diagnosed with COPD in 1999 after a hospitalization for respiratory failure. I have what is considered severe COPD with an FEV1 of 34%(4/06); my FEV1 was 29% in 2005 and I can only conclude that quitting smoking and going to pulmonary rehab are responsible for the improvement from very severe to severe. I am on Advair, Spiriva, Albuterol and Theophylline.

I have had motivation problems when it comes to exercise. It seems that unless I'm accountable to someone, I very easily talk myself out of getting any good exercise. I went to pulmonary rehab in 2001 and again in in late 05/early 06. I've been in and out of pulmonary rehab maintenance ever since then.

So it isn't any great stretch to determine that I am quite deconditioned. In October, I called our local hospital where the rehab is, and asked to get back into the maintenance program. I was disappointed to learn that all the classes were filled and that I would have to go on a very long waiting list. I have been exercising on my own sporadically.

Just after Christmas, Rose, who runs the program called me to say that because there were so many on the wait list, our pulmonologist insisted that she start another class! Wahoo! I started today and go Tuesdays and Thursdays.

I will continue this tomorrow, as I am VERY tired and sore tonight. I'll be able to think clearer and therefore write clearer on a good night's sleep. So sweet dreams,all, and breathe easy!

~Eileen

WORKING OUT THE REHAB ~ THANKSGIVING

2006-11-22T23:10:00.000-05:00

Welcome, my Friends! Thank you for checking in on me. It's Thanksgiving time and I wish you and yours the happiest and healthiest Thanksgiving ever. For our international friends who have their thanksgiving at another time or in another way, please feel free to join in giving thanks right along with us. All are welcome here!

Well, the doc has not cleared me to restart rehab but I have an appointment Monday and truly believe he will release me to restart. I'm feeling better, weak but better. The fever is mostly gone but boys am I ever short of breath and I know it has a lot to do with inactivity. So....I'm looking forward to getting restarted but know that it is also going to be difficult. That was some mean infection I've had. Whew! I don't want it any more!!!

In the meantime, I am practicing my PLB and diaphragmatic breathing, hoping to build those muscles and strengthen my lungs for what lies ahead in rehab. WOO HOO! Have you guys been doing your breathing exercises, too? Walking? TM? Resistance training? I am starting the resistance training here at home on my own with cans of soup. Hahahaha. Hey! Whatever it takes to make it work. Now, I am using the cans of soup as free weights lifting one on each side. I'm not tying them to my ankles...yet. :-) Now, over on the www.Breathbetterlivingwell.com site, there are two new forums that work well with rehab. One is The Village Gym and then there is The Day Spa. Of course, the Gym is all about physical fitness and the Day Spa is about beauty methods ~ mostly natural, and relaxation/stress relief ~ mostly meditation and massage. Please visit and feel free to add you own thoughts, methods or ask questions. Things are really happening over there at BBLW and having you add your input makes it all the better.

Another one of my goals in rehab (or out of rehab for that matter) is to better my nutritional input and lose at least 8 pounds by the 1st of the year. There it is, peeps. Right there in writing. My commitment of 8 # by year's end. Think I can do this? Oh, I think I can....I think I can....I think I'd better!

Notice all the ghosties and goblins have gone back into their mysterious world for another year. Did anyone get tricked this year? Treated?

All the little elves and sprites are out and running about town gathering all the tools and materials to create those wonderful Christmas surprises for everyone. Don't you love those squeals of glee on Christmas morning after Santa has visited? Such joy! A truly magical time of year.

OK you guys, Stay with me, please and be sure to check back because I need you all to come with me to restart the rehab. Here I go getting nervous again! YIKES!!!

Love you all. You guys totally Rock~~~

Working out the rehab, every day, working out the rehab, every way, working out the rehab, it's all right, working out the rehab, our lungs are gonna fly~

Till next week, my lovely friends. Rock on!!! I celebrate each and every one of you this Thanksgiving. I am so very blessed to have you and so very thankful for you!

Sweetest blessings!
Kasey

WORKING OUT THE REHAB - CRIMEY!

2006-10-16T19:43:00.000-04:00

Hi Gang and thanks for checking in on me. Guess you've noticed that I have not blogged in a couple of weeks.

Due to a rather nasty lung infection brewing in my lungs, the doc has taken me out of rehab but.....WAIT...WAIT...... it is only temporary and I should be able to start back in rehab next week if my lungs continue to improve. If not next week then the following week for sure. Just in time to celebrate my birthday. :-)

It is getting to be "that" season when ragweed is flying, bus exhaust fumes are soaring, and the elves are beginning to work over time, 'round the clock, to get all the holiday goodies ready. The ghosties and goblins are already grumbling and moaning and clanking chains. Can you hear them??

While I complete my healing from this infection ~ and thank God I am healing ~ please do come visit us at the Community Bulletin Board. Here is the link/address for you.

http://www.breathingbetterlivingwell.com/community/

There's a lot going on over there and we are organizing a "Newbie Chat" which will be hosted by 2 of our newbies, Karen and Sable. It is a 'let's get to know each other, ask copd questions, chat amongst ourselves' kind of open chat and there is no pressure. You can just log in and sit and watch if you like. You won't be pressured or made to feel uncomfy. So check in and see which evening Karen and Sable will be holding the first "Newbie Chat."

OK, back to the rehab. I'm really sorry for this unplanned hiatus and rest assured that I will return in the next week or so and we will be....

Working out the rehab, Everyday! Working out the rehab, Everyway! Working out the Rehab, It's alright! Working out the rehab, our lungs in overdrive!!!

WOOOO HOOOOOO!!!

Love you guys ~ every one of you!!!!

Sweetest blessings,
Kasey

WORKING OUT THE REHAB - 2ND EVALUATION DAY

2006-09-23T19:22:00.000-04:00

Greetings and welcome, welcome, welcome! Thanks so much for the support and for hanging with me. You guys are the best! Well, for obvious reasons, it was a rough week last week all the way around. But, life does go on and Pulmonary Rehab is going to improve mine ~ and yours, too, I hope!!

Our 2nd trip to rehab was the 2nd half of evaluation. This is the part of the program where they take the vitals and make the determination that one is fit enough to continue as well as determine how aggressive the program will be. Sort of customize a rehab program for each person.

My vitals are as follows:

Blood Pressure: 142/69

Pulse: 100

FEV1: 22%

Oxygen Flow: 2 Liters per minute (LPM)

My 02 saturation is at 97% until I start walking and /or exercising, then it begins to drop markedly. My 02 liters per minute (LPM) will have to be adjusted during walking and exercise from 2 LPM to 3.5 LPM for the moment. As we progress on the exercise side, the LPM will be adjusted to wherever it needs to be to keep my 02 sat at 91 or above. It will be very interesting to see exactly where my 02 requirement falls on my next visit compared to where my 02 requirement will be at the end of rehab, won’t it?

We got weighed as well but I’m not putting that here. Not gonna.

The six minute walk was, as usual, horrible as far as my performance. I have never lasted 6 minutes. I don’t think I’ve ever lasted over 2 minutes. And this time was no exception. My 02 dropped to 86 within 2 minutes time and they had me stop, sit and breathe. The diaphragmatic breathing is just incredible and brought my 02 sat back to 95% very quickly. It took about 1 and ½ minutes for me to reach 95%. The six minute walk is on my agenda again for next session. My heart rate goes high on this walk, too. So they are keeping an eye on that but tell me that as I become more conditioned, the heart rate will decrease comparatively ~ decrease and then stabilize.

Then, they introduced us all to the treadmills and we were allowed to stay on them very briefly ~ for 5 minutes. This was not to exercise but to acquaint ourselves with the machine for next session. I think mine may have snarled at me. The RT put me on the one closest to her. Not sure if that is to keep an eye on me due to my being so deconditioned or to whack me with the ruler if I act out. We’ll see.

Seems that I may be the youngest in the rehab group. The youngest and the least fit. LOL This will be fun, I can tell. It's been a long time since I've been the youngest in any group! Woo Hoo!

That was it for this session as they had to get all of us checked in and checked out. So am totally looking forward to next session.

Please stay with me, guys. Still pretty scared here so I need all the support I can get.
Till next session, then, which is Wednesday.
God bless and stay safe!
Kasey
Working out the rehab, everyday! Working out the rehab, everyway! Working out the rehab, it’s alright! Working out the rehab, our lungs on overtime!
Have a great weekend, guys! Love to all! You guys rock!

WORKING OUT THE REHAB - EVALUATION DAY

2006-09-12T09:22:00.000-04:00

Welcome and big 'ole hugs to each of you! Thank you for sticking in here with me and for the encouraging comments and emails. You guys rock!

The first trip to rehab left me a little mixed ~ excitement and a little bit disappointment. You see, this was the Evaluation part. There was paperwork, paperwork, paperwork that had to be completed which took up a lot of time and that disappointed me. (That and the fact that my RT did not see the humor in my pointing my M6 holster at her and pretending to launch a missile her way. I was just clowning around because I am nervous! Some of my classmates "got it" though and that was pretty cool.) Now I know the paperwork is a necessity and an important tool to let the medical professionals know at a glance exactly what meds I take, my vitals, my diet, etc. It's just that I am raring to get on with the actual exercises and such as that. I am ready to go! (Idea! Maybe they could add a page to their website and rehabbers could input that needed data online and ahead of time. That way, they could have it right there in their file on the rehabbers very 1st session, already reviewed. Time saved! Think I ought to mention that, guys? Really, I would appreciate your input!)

On the excitement side of the coin, the RT, Peggy, gave us a class on breathing techniques that was enlightening and incredibly helpful. She discussed, demonstrated and then had us all participate in Pursed Lip Breathing or PLB as it is called. BBLW has this info on their Basics page and, after you have finished here, please go there (link is below) and learn this technique. It certainly helps to gain control of breathing, especially when I panic. Rather, if I concentrate on the breathing method and my own breathing, this deters the panic and gets my 02 level back up quickly and my breathing back to normal. PLB is a very useful tool and one that I rely on a great deal. We are also working this week on PLB while walking to ascertain if this will allow us to continue the walking without having to stop and lean on something to regain our breath. A trial study for our group, if you will.

The second breathing method she taught us is diaphragmatic breathing. This method, too, is on the Basics page of BBLW. I tell you a truth right now. This one takes some practice, at least it does for me, but the rewards are tremendous so I'm jazzed about this breathing tool. This one actually helps to vent out the C02 which improves 02 saturation which helps to decrease the SOB. Results! Results at last! :-) Now, I thought I had already been doing the diaphragm breathing but.....not so. At least not correctly. I was simply exhaling the air that I had inhaled into my abdomen. The chest remains still and one inflates their stomach area then uses the stomach muscles to exhale while using the PLB method as well. My error was that I was simply exhaling and not using the stomach muscles to push out the air. Using those stomach muscles and pursed lips not only expels the air just inhaled but also helps to get rid of some of that old, stale, used up air that is trapped in our enlarged air sacs. This allows room for new air and the sob is decreased somewhat and the gas exchange improves which helps 02 saturation and, generally, makes me feel better. Maybe that is because I am getting rid of the C02 and the old air. I'll have to ask about that. In any event, the diaphragm breathing method, while taking regular practice and some dedicated time and concentration, is so totally worth the effort in its rewards to our respiratory and cardio systems, not to mention just feeling better and getting around better. Yes, I am definitely jazzed over diaphragm breathing. I encourage each of you to visit BBLW's Basics page, click on "breathing techniques" and you will find the step by step instructions. Or use this address: http://www.breathingbetterlivingwell.com/basics/breathingtechniques.php
I want you guys to have this experience right along with me. Deal?

If I am to be totally honest and that is what you will find me to be, I must tell you that I am still a little intimidated and worried about this whole rehab undertaking. Mostly, the fear is that I won't get the results I desire. So that still hangs on me. You guys are the only ones I've told about this misgiving so please keep my confidence, OK?

Next rehab session, I will get my vitals and will post them here for you guys, too. And I hope they will start me on the exercises but, if not, then at least give me the outline for the following session. I will be going 3 times a week, each session for 2 hours. Is that a lot? You guys are going with me, yes?

Hang with me, my friends. I appreciate your support and I NEED your support and your input.
Thanks so very much and please look for my updated blog later this week. I look forward to hearing from you, too.

Sweetest blessings!
Kasey

Working out the rehab, everyday! Working out the rehab, everyway! Working out the rehab, it's alright! working out the rehab, our lungs on overtime!

WORKING OUT THE REHAB

2006-09-02T15:30:00.000-04:00

Hi there and welcome. It's so nice to have you here. Do you want to step into the challenge of Pulmonary Rehabilitation with me? I could use your support, frankly.

I am Kasey and I have COPD ~ chronic bronchitis, emphysema, asthma ~ all "severe" and having been diagnosed in Nov 2004. I am terribly short of breath (SOB) and my oxygen level drops (desats) pretty rapidly when I move about, walk from room to room. My last FEV1 is 23%. I am 5'2" and I'm not telling you my weight but Prednisone has caused me to pack on some pounds. So ~ I'll just say, I've got to lose these 2 Thanksgiving turkeys that moved into my belly when I wasn't looking! :o)

I have been trying to get into rehab for more than a year and finally have the green light to do it! Woooo Hooooo!! Truthfully, I am really jazzed about going but am also a bit apprehensive about it. All the material I have read and the folks who have been kind enough to discuss pulmonary rehab with me have convinced me that pulmonary rehabilitation makes a marked change for the better in a COPD'er's quality of life, enabling us to be more active which, in my mind, would create a positive cycle, a healthy upswing. It lessens shortness of breath, strengthens muscles, improves the blood gas exchanges and circulation and gives a good education on enhancing quality of life and our health even further. I hear they even give tips on nutrition. Now, this is what I've been told so we are going to see ~ together ~ if I get these wonderful results. OK?

However, I can't help but wonder what if....what if I can't cut it? What if I can't keep up with the others? What if I do not pass the evaluation? What if my 02 supply runs out? What if I have one of those embarrassing episodes of gasping for air while clinging onto something....anything....for support? What if, what if, what if is a record that plays repeatedly in my head. Makes me crazy! And then, what if I go through rehab and the results are disappointing? My SOB hasn't improved? My "can do" activities have not been expanded? What then? Does that mean I'm doomed? That for the remainder of my life, I cannot breathe, walk, talk, shower, change clothes any better than I can now? My quality of life can't be enhanced? This is it? Is it the beginning of the end of me? ... Yes, one can say I'm a wee bit worried and apprehensive about this pulmonary rehabilitation. I know it has helped countless respiratory patients. But will it help ME?

FYI, I am on oxygen 24/7 at 2LPM and have been for several months now. Prior to that, I was on as needed and then at night. Same 2LPM. Lately, I have increased the flow to 2.5 or 3 LPM due to the excessive heat and awful air quality we've had. My oximeter tells me that when seated and still, my 02 sat is 95 - 98. When I start walking around, I desat to 88 very quickly. By using the PLB, I can get it back to 91 pretty quickly and then there is a slower increase from there. So, the 6 minute walk for me is ..... awful!!! I've been sedentary, which is a huge disadvantage. No one told me to exercise until I found BBLW. Now, when they give me the current FEV1, 02 Sat, etc., at rehab, I will post that info here and you all can see my progress in real time for yourselves. (Say a prayer, please?)

I take many medications: Adviar 500, Spiriva, Albuterol, Singulair, Albuterol rescue, prednisone, Advil, Xanax, Atacand, Atenolol, Synthroid, Claritin D. I also take supplements and the ones that I take specifically for my cardiopulmonary system are: Co-Q10, Omega 3, B12, Zinc and Bone/Body Factor for Women. My doctor told me last week that he is considering Xolair for me as I continue to have far too many asthma symptoms. Maybe rehab will facilitate getting off of some of these ~ I hope!

I've prepared myself (I think) for the 1st day of rehab by packing my little tote bag with my "necessities" and making sure I am wearing light, loose clothing. Also bought myself a new pair of Reeboks. Got a couple extra M6's (tell the truth - doesn't that sound like a kind of missile?!) and a fancy new shoulder holster to carry my 02 missiles along with me. I packed a PB&J in my tote, too. :o) Maybe I should make that carrot sticks and celery, eh?

I hope you'll stick with me because I sure can use your support. Thanks for being here with me. Ready to go? Let's roll!
You know that song, Taking Care of Business.....
....working out the rehab, everyday! working out the rehab, every way! working out the rehab, it's all right! Working out the rehab, my lungs on overtime!
(silly, huh?) ;)
::::::::::::: grabbing my bottled water (H20) on the way out the door :::::::::::