Lingering Suspicion

Last week, I finally admitted what I knew had been going on for a couple of weeks, which was that my lungs were once again producing thick disgusting stuff every few days. I sometimes sit on information like this until I'm "sure" it's what I suspect it is - in other words, when I'm not able to deal with it yet. I made an appointment and was able to be seen in lung transplant clinic on Friday. Though my regular doctor was not available, I was thrilled to be able to see another who followed me part of this last hospitalization.

Whereas often there are many floating pieces with my health that are difficult to tie down, this visit gave me some concrete answers to some major things that have been going on. That was certainly a treat!

• My muscle fatigue and corresponding shortness of breath sounded like classic anemia symptoms to the doctor. Completely agree. To address this, I'd already received a pint of blood on Thursday. And I'm starting on a magnesium supplement.
• The anemia was caused by the photophoresis, which explains why the fatigue had progressively gotten worse roughly since the time I started that. However, there's no plan to slow or stop the photo based on that at this time.

But, back to my lungs. My lung functions were up a little bit, which could be an indication that the photo is helping (lung function improvement is the line to measure photo success). However, my xray was a little worse than last time and tracked with the congestion I've been feeling. The doctor also expressed concern about my nutritional status since a couple of my general lab numbers were down and I'd not gained back any of the weight I'd lost this year. I've actually been eating pretty well (for me), so I wasn't sure what to say about that. In general, I'm rarely hungry and cannot eat a lot at once; making myself eat meals anyway has been a huge victory in itself and I'm sad it hasn't translated into better numbers.

Considering my antibiotic resistance and difficulty getting over my lung exacerbation this summer, the doctors are very protective of the small gain I've made in PFTs and do not want to see them drop. Because of this, we decided to start three weeks of home IV antibiotics using one of the two drugs I was on this summer. If I start feeling worse or do not feel improvement after one week, I need to be hospitalized again so that they can desensitize me to the second antibiotic the same as last time. If that happens, I intend to stay in the hospital for the duration as doing five infusions at home daily proved too much to handle.

A couple of other things:

• I had to postpone pulmonary rehab. I literally did not have the energy to both do that and walk my dog enough for her to use the bathroom properly every day. Since I was so anemic, it's no wonder!
• I have some stupid red spots on my stupid body that dermatology wants to do a larger biopsy on... This feels like another POINTLESS line of inquiry in the annals of transplant patient dermatological mysteries. This is scheduled for tomorrow morning, followed by picc line placement at noon.
• I will not be doing photo while I'm on antibiotics.
• I have a call this afternoon with my CF Legal Services lawyer to fill out the Function Report for my disability claim. Things are moving along.
  
• I've been making inquiries with estate lawyers to try to get a few of my own things in order.
• I'm running out of money again!! And I'm so tired of asking for help. I'm going to try to get some money out of my life insurance policy. If you can help, please do!
  

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A New Direction

This entry is difficult to write, and it may be difficult for some of you to read.

What I have been living with for many months now - mostly pertaining to health matters, but also filtering down to everything - has been so incredibly difficult as to be emotionally unbearable most days. There aren't enough superlatives, upper case letters or bold fonts to express the jeu ne sais quoi the place in which I find myself.

I am anxious and depressed. I am tired in body, mind and soul. I am isolating myself from people because just making conversation takes too much effort to think about let alone to do. Few people know my "day-to-day," and while I know I need more people to be aware, to be among my circle of support, I have not been able to bring myself to open up.

My life - and the lives of many others living with cystic fibrosis, double lung transplant and an exhausting list of all the things that go with it - has been incredibly difficult. I have the tiniest capacity to tolerate or deal with all of the little fucking things that comprise my life, both on a regular basis and ones that pop up at steady, obnoxious intervals. 

Additionally, in the last several months, my mind has settled into my decision to not go through another double lung transplant (assuming I could get approved with a so-so kidney and the new super bacteria I'm culturing in my lungs) so it's not likely that the future gets easier.

What this means is that every ailment, symptom, bad test result and subsequent treatment recommendation is a choice that I am weighing differently than I may have in the past. Is it really worth it? I have come to realize that my capacity for illness, feeling bad, and other bullshit that life throws at you is finite.

The New Weekly Routine

This past week, I completed my third week of photophoresis and my first week of pulmonary rehab. The photophoresis has gone smoothly. I got a port, the treatments are a little over two hours long, and I haven't had any noticeable side effects. I get these done on back-to-back days twice per week at the bone marrow and blood cancer infusion clinic.

Pulmonary rehab, which I'm doing three days per week, has overall been easier than I expected. There are definitely challenging aspects, like when I'm five minutes into riding the exercise bike, cannot conceive of how I'll make it to 10 mins, and feel the urge to grab for oxygen tubing even though my oxygen sats are nearly perfect. Rehab seems shorter and more streamlined than the program I went through both pre and post double lung transplant. I am in a medical group with people who have all kinds of issues. So far, I've met a man who had his esophagus removed and a woman dealing with nephropathy (nerve damage) in her feet due to a side effect of chemo treatment. Every class, we walk on the indoor track, ride the bike, and do weights, balance, and stretching exercises. Each session the time, difficulty, and resistance is increased.

It's not difficult to imagine that having five regular appointments per week, three of them involving physical exertion, would be tiring. I expected that. What I did not expect is for my muscles to take so much time to recover. I'm not talking about being tired after a workout, I'm not talking about being sore the next couple of days. I'm talking about an internal fatigue in my muscles in which my legs feel deeply and undeniably exhausted and out of energy. It feels like, "maybe if I rest for an entire week doing absolutely nothing my legs will feel normal again." I try to remind myself all the reasons that my body is taking its time recovering from physical effort, such as chronic lung rejection and super bacteria hanging out in my lungs. In addition, I know that processing the emotionally charged decline in my health takes an enormous amount from my body, too.

So, there you have it.