Pulmonary Rehab and ME

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!!!

Rise and Fall of My Pulmonary Rehab

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

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

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

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

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

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