Forward: I have been at home now for just over two weeks and today is 4 weeks post-op. In many ways I feel better than I have done for years. My recovery has various aspects and each is important to focus on. The road to recovery is a bumpy one and they never really tell you about the rough stuff. They generally limit it to what life is like after recovery (those rose tinted spectacles I was talking about) but as you’ll see, getting there a mixed bag.
It’s important for me to be able to partition off the different aspects of recovery and consider them independently. That way, if one aspect of the recovery is giving me trouble (which is quite likely) I don’t allow it to ruin my day. I can remain grateful for the overall progress I’m making. From day to day it’s difficult to tell the difference but from week to week the improvements are really evident.
The Kidney: My kidney function has been improving constantly. The way the University Hospital Stoke measure Kidney function is by assessing the ‘Estimated General Filtration Rate’ or EGFR. This differs from QE Birmingham who primarily focussed on creatinine levels.
For context, when I ran the ‘Race To The Stones’ in July 2019 my EGFR was approximately 14 ml/min – pretty poor in general terms, but enough for me to run 100km with no specific ill effects. When I started dialysis it had dropped to about 7 ml/min and I was heavily symptomatic… My last blood test on Friday put my EGFR at around 57 ml/min… a huge improvement (UPDATE 66 ml/min TODAY) and close to where it was a decade ago. My creatinine levels are about 120 mmol/L, approximately where they should be. My potassium levels are safe at around 4.8 mmol/L.
Side Effects: As expected, I am experiencing a lot of side effects to the new drugs. One of the immune-suppressants causes a Parkinson’s-like tremor so I chuck food everywhere, particularly when I’m tired. I’m getting slightly better but I do look like a withdrawal case. The other immune-suppressant gives me gastric problems (the runs) which is exhausting. The steroids have given me bad acne and they are also a stimulant so stop me sleeping well. They can cause stomach ulcers so I take an inhibitor for that. They also mess with your head, adding to the emotional turmoil (more on this later). Apparently they make me very tetchy! I take antibiotics to prevent certain chest infections and Sodium Bicarbonate to reduce my blood acidity. I am also on a rash of blood pressure medications; high blood pressure is the enemy in terms of kidney health. I used to suffer from high phosphate levels, but now my phosphates are too low, which is a condition in itself. So I am on a supplement for that! I am also taking a magnesium supplement. Rattle, Rattle…
Over time the dosage of these medications will be reduced until they find the balance my body is happy with. They need to suppress my immune system so it doesn’t attack and reject the new kidney, but allow it to raise up enough so I have a bit of protection and don’t catch every illness known to man. It’s a delicate balance and it takes time to get right.
Physical Recovery: Externally my wound is healed nicely. There is still a little bruising but there is no scab and the pain is generally manageable. I have to be very careful as the internal healing takes a lot longer and we don’t want a hemorrhage or a hernia. That would be bad, so no lifting, vacuuming or housework allowed. I’m a bit of a neat freak so this is hard work. I have a strange rectangular bald patch on my right leg with with no feeling… I am told this is because the nerve is located in the skin and has been severed during surgery. It may come back in a couple of years – nerves are slow to grow – we’ll have to wait and see.
I am still very weak and constantly knackered. There is a lot of healing to be done and my body is dedicating all its resources to this task. My appetite is reduced and I have lost a massive 15kg or so in weight. This is mainly fluid, as I still have plenty of muscle mass. I can’t walk more than a mile without needing a sit down. This is where my training-head will come in useful. Master the distance, then extend. Little by little we’ll get there.
Unexpected Consequences: An unexpected consequence of the transplant are that my eyesight has corrected itself. When I was on dialysis I had to go to the opticians to get new glasses, as my eyesight had deteriorated considerably. I genuinely couldn’t see to read and the deterioration was quite sudden which was scary. Now everything is crisp and clear! I was also suffering from terribly sensitive teeth. Even on the day of the transplant I was suffering as I brushed my teeth that morning. Post-op it has not re-occurred once and appears to be cured. Who would have thought? I am also finding things funny that I didn’t before… this is probably the strangest consequence. Perhaps it’s because my well-being is vastly improved or that I just feel a lot better, but it’s great to be able to belly laugh at Red Dwarf episodes I have seen a thousand times once more.
Well-being: I am still peeing like a horse and this is likely to continue for the foreseeable future. The Prof told me it’ll be a year or so before my body recognises that my old kidneys are doing nothing useful and switches them off. Right now I have three on the go extracting water from my system. The lavatory is my best friend. And I’m not used to having yellow pee! For years, my kidneys left all the bad stuff in my system so my pee was clear. Now my new addition has woken up inside a filthy body and is really going to work, scrubbing everything out, including my precious phosphates and magnesium.
I’m also an emotional wreck. In fairness the hospital did warn me that this wound happen. The kidneys are responsible for a producing lot of hormones that I’ve been lacking for some time. Now present and coursing through my system and, when coupled with adrenaline which is produced on the top of the kidney, the results can be volatile. I have to work hard to manage this but at least I am aware of the cause. I try to remember that having a shitty day is not an excuse for me to be a shitty person.
Thank you to everyone for the well wishes, cards and goodies… I’m so lucky to be surrounded my so many kind and caring people. Kerry, James, my parents and neighbors are taking good care of me and are catering for my every need. My friend Lou is keeping my head screwed on from a distance. I am having frequent updates from the transplant team the Hospital and their dedicated team are visiting me several times a week to take blood samples and deliver medication. Once again, I have been touched by all the love being directed towards me and I am looking forward to seeing you all in real life very soon. x
#R24TRC 