Update On A Busy Week

This is the first chance I have had all week to sit down and write on my blog. This week has been busier than I imagined, but it was all good busy.

Let's skip Monday. To be honest, I don't even remember Monday. Tuesday is when it all started. I have been waiting for Tuesday, September 10th for over a month. On Tuesday, I started pulmonary rehab. This is an eight week program dedicated to helping people with lung disease. It is a program to help people start exercising and learn how to manage their disease. I'm in this program for the exercise. I asked my doctors months ago to get me into a rehab program where I was forced to exercise weekly. Any medical professional in my life knows how much I hate to exercise and how lazy I can be, so for me to actually ask to be put into this program was a huge step forward. This program will be good for me, and keep me strong while waiting for new lungs.

I want to give you some facts about rehab so you know what I will be going through for the next two months :

• It involves eight weeks of lectures and exercise. The first four weeks consist of two days a week for 3 1/2 hours. The last four weeks consist of only exercise three days a week for an hour and a half.
• Lectures consist of learning about the respiratory system, nutrition, smoking cessation, and more.
• This program is for all lung diseases, but is really geared toward old people with Chronic Obstructive Pulmonary Disease (COPD), which includes emphysema, pulmonary fibrosis, and a whole lot of other diseases.
• Most people are old who are enrolled in rehab. I mentioned this, but it is worth mentioning again because I feel really out of place.
• Most of these other people have smoked their whole lives and it really bugs me. I'm learning to be tolerant through this program, but honestly, I'm having a hard time being the only one with a genetic condition who didn't purposefully kill my lungs. I wish I could drag some teenagers with me to see the destruction that has happened to these people. They look miserable, and are on oxygen full time. I'm lucky enough that one day my lungs won't be suffering any longer, but these people have a lifetime of pain and discomfort from destroying their lungs for decades. So kids, my message to you is, don't smoke! Ok, I'm getting off my soap box now.

I have been to rehab both Tuesday and Thursday this week, and I can already tell I'm going to have to bite my tongue through most of the lectures. These lectures are geared towards people who don't know much about their disease, medications, or management of their bodies. I was already bored as hell yesterday learning how we breathe through our nose and that we have five lung lobes. I knew these facts before I even knew my math facts as a child. For the next several weeks I will sit through these lectures, maybe gaining some info, but more likely giggling in my head and trying to keep my eyes from rolling in the back of my head.

Wednesday was also a big day. I had CF clinic, which was the first time being back at Stanford since my evaluation. Something strange has occurred in the weeks following that evaluation. My lungs and energy started feeling better and better. After evaluation, I was convinced I needed IV antibiotics because I felt like total crap. I was so tired and my breathing was so bad. After the transplant evaluation, I went home and was going to give myself a few days at home before checking myself into the hospital. Days went by and after resting a lot, I started to feel better. For most people this doesn't sound novel, but for someone who usually always needs medical intervention when feeling sick, it was somewhat strange to feel better with just some rest.

One thing changed, besides getting more rest. I quit my job a few weeks ago. As much as I loved being a nanny, and as much as I didn't think it was affecting me, I must have been wrong. Most people with CF just get used to feeling sick all of the time, but it seems a lot of us do better after quitting work. I had heard it before, but I didn't really believe it could happen to me, especially since I was working very limited hours.

As Tom and I were driving to clinic on Wednesday, I said to him that this was the best I have felt in a while. Well, I was right! When I did my pulmonary function test, i.e. measuring my lung capacity, we found out I gained 5% lung capacity back in just over three weeks. This is HUGE for me. I can honestly say that I have only two other times in my life gained lung function without extra medical intervention. I usually need IVs to gain lung function back. I was seriously shocked. I knew I felt better, but I had no idea my lungs were doing that much better. Now, to put it into perspective, it's still not great. I still have less than a liter of lung capacity on a daily basis, where most normal people have about 4 liters. I'm still in the window for transplant, but it means I don't need any IVs for a little bit longer!
Wednesday was a long day, a positive day, but clinic took over three hours. Traffic was horrible on the way home, and Tom and I were just exhausted. Thursday was another day of rehab. We worked out a little harder and I definitely awakened some muscles.  We had a lot of running around the rest of the day, which made me just as exhausted.

This brings me to today, and I can finally say I have no plans today or for the weekend. I am seriously happy about that. This post is too long, so I am going to end here, but thanks for being patient for the next post, and I am sure I will have good rehab stories for you next week. Until then, have a wonderful weekend!