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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