Week +5: Rough with the Smooth

Forward: I am settling in for the long haul and taking my recovery one day at a time, so will be shifting to regular weekly-ish updates. I have been blown away by the response to my blog from friends and strangers alike. Thank you all. I still have many tales to tell about my journey, so watch this space.

I am now five weeks post-op and small improvements are starting to become apparent. My kidney function is still improving and is now better than it was at the point of diagnosis, so at least a 16-years high. After the huge initial advances, I expect the improvements to slow down, but any continued progress is good news. I have had my stitches removed where the tunnel-line in my neck was taken out. This was well and truly embedded and had definitely become a part of me. The Doctor had to work for about half an hour to dig it out and I had three silk sutures that were removed on Saturday. They will leave a lovely scar… perhaps I’ll get myself a tattoo? The doctors have also started to reduce my anti-rejection drugs a little. I am still on a stupidly high dose, but this suggests my body is adapting which is a very positive sign.

I am also starting to feel physically stronger. I have found that I generally feel worse in the mornings. My scar hurts a lot from lying in the same position combined with the impact of limited sleep. It takes a lot out of me doing simple tasks; Showering, dressing, preparing breakfast and going up and down the stairs really wears me out. After plenty of coffee and a bit of food I perk up considerably. On Sunday morning we went for a three-mile walk with Kerry and James which I enjoyed a lot. It was a success. I didn’t have to stop for a rest at any point and was able to function for the rest of the day. The physio recommends I do at least 30 minutes of moderate exercise a day, so this is my new target. I am pleased to have been cleared to do a bit more and can be my own guide, I just have to be careful not to do too much. I have also managed to get a grip of my blood pressure with the help of many, many drugs. This should improve naturally as I regain my fitness and continue to recover.

The doctors are happy and I am able to have telephone consultations rather than attending the hospital in person. Bonus.

I am not sleeping well which is proving tough. I have trouble going to sleep and when I do, I wake up very early. I managed a total of 6 hours sleep over a 72 hour period last week and was exhausted. Lack of sleep makes me anxious because I know that good quality sleep is critical to the healing process, not to mention overall general health. I am assured that this will pass in time as it is a classic side effect of the anti-rejection drugs, mainly Prednisolone. Prednisolone is a steroid that is used to treat various inflammatory and auto-immune disorders and gets a very bad rap, mainly due to litany of horrific side effects. The sum total of my side effects seems to be disturbed sleep, darkened mood and acne (which I am now covered with). The benefits (not rejecting my kidney) far outweigh the side effects, I’ve just got to hang in there.

The tiredness is also not good for my mood. I keep on getting uncharacteristically upset and angry for no apparent reason. I know what the cause is (hormones and steroids) but when your world suddenly darkens for no apparent reason it’s confusing and tricky to deal with. I am trying my best but I know it’s hard for those who are closest to me. As I’ve said before, I was warned about this, but nothing can prepare you. You just have to deal with it as it comes along, such is life. Exercise helps. I started running for stress relief (along with weight control). It worked amazingly well and I came to depend on the open road and the trails for my therapy. Now the trails are off-limits for a while, but I can still get outside and breathe, which is relief. The outdoors is good for the mind, provided you can avoid people!

The tremors are also persisting. Some days are worse than others, but anything that requires precision or stillness (eating with a fork, writing, putting on a record, holding a book to read) is very difficult. It’s a tremor from your core which travels down your limbs and is therefore difficult to control. It also makes my arms ache by the end of the day. All things considered I think I am getting off lightly. If you Google the side effects of Prednisolone, Adoport Tacrolimus and Mycophenolic Acid it’s enough to terrify anyone, but what you experience depends very much on your circumstances. I was in comparatively good pre-op condition which I am sure is helping.

I found some photographs of the rash (IgA Vasclitis) I described in my Day +10: Origins post. These were taken in January 2004 (pre-diagnosis) and the rash was worse than I remember. I’ll think you’ll understand why I persisted with the doctors. I only got my diagnosis because of this rash and dogged persistence. The rash eventually went away but was the only outward sign that all was not well in my kidneys. Had I not received treatment for Kidney Disease my kidneys may have failed a lot sooner.

If you every get a rash like this, SEEK MEDICAL ADVICE IMMEDIATELY. In many ways, at the time I was lucky that it was not meningitis, but a non-blanching rash like this is a classic danger sign that should never be ignored.