Week of July 22 - Tuesday and Thursday

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

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

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