Under The Knife – Suffer, Worry, Repeat

My son is fast asleep next to me. His breath is swift, but even. I exhale had close my eyes. Suddenly he wakes up, coughs and exclaims “Daddy, I’m not feeling well. I think I need to throw up!”

Since the transplant he’s hardly eaten and hardly held down a drop of water. I’ve lost count of how many times he’s been sick this last week. He’s been under anaesthetic two more times since he got my left kidney. The first time (I don’t remember which day that was, I’m on heavy painkillers, time lapses and memories mix) to get a dialysis catheter inserted. The second time, today, to insert a tube in his bladder, check that the kidney is correctly “wired” to the bladder and do a biopsy on the kidney.

Our boy is a very intelligent and inquisitive young man. He needs to know exactly what’s going on all the time, and understands a great deal. The medical team like him a lot, because he is cheerful, entertaining and easy-going. However, his inquisitive mind also to his disadvantage, since he can’t manage to relax and just be. I know who he gets that from, because neither can I.

Donating a kidney is basically going to hospital to get sick. The doctors and nurses have prepared me very well for the procedure, the stay at the hospital and the weeks of recovery. I have read a lot, done a lot of soul-searching and now, when push comes to shove, I fail at the main task: relaxing, letting go and just being.

It’s not my job to take care of him now. It’s not for me to fret for him and worry about him. I’m sick now, and I need to gain my strength, but I’m no good at that. So I do what I’m used to. I suffer, worry, repeat. Suffer, worry, repeat.

This needs to stop now. I’m a patient, so I need to be a patient. And I need to be patient. I owe it to my son to recover, so I’m strong when he gets back from hospital. And I owe it to myself to let go, so he will learn to let go.

Under The Knife – The Day Before The Day

Tomorrow is the big day. We’ve been at the hospital since yesterday morning and gone through the last leg of the screening process. The doctors have even made absolutely certain I’m ready to give away one of my kidneys. From time to time they experience that people almost get as far as the operating table and then get scared and back out. I understand why. It’s quite scary to willingly “get ill” so that someone else can get well. And even though you know it’s the right thing to do, you do a lot of soul searching. At least you ought to do a lot of soul searching.
I’m lucky to have my health and I’m also lucky be at my healthiest when I’m in my forties. I’m lucky to be compatible and to give my son the gift of life for the second time. I’m lucky to live in one of the safest countries in the world with free healthcare, and I’m lucky to have caring family and friends around me.
Tomorrow my son and I will be part of each other’s lives in a way few get to be. How amazing is that?

Project: Life. Days 294-332

It’s Friday, it’s past nine in the evening, and I’m sitting in the living room in the dark, watching TV and writing. Our youngest daughter is sleeping on the couch. She’s been home from kindergarten with her mum today because she’s been throwing up since last night. Her stomach has only just settled down a couple of hours ago.
The last four days I’ve been four trips to hospital, all of them in preparation for my son’s kidney transplant. I’m with almost 100% certainty eligible to be a donor. Almost because they’re awaiting results from today’s CT scan of my kidneys to make sure they’re 100% OK. All other tests show I am in very good shape, actually in better shape than I thought myself.

The last 24 hours I’ve worn a blood pressure monitor and undergone a CT scan. The last three weeks I’ve taken more blood and physical tests than ever before in my life. It’s taught me to really value my health.

Our son’s focal segmental glomerulosclerosis has been the main focus of our family since he got the diagnosis. His kidneys are slowly dying, and to avoid endangering his health, the hospital has agreed to give him a kidney transplant this summer. I’m giving him one of mine.
I keep repeating that to myself in my head, because I think it is amazing. I’m giving him one of my kidneys.
He can get one of my organs, and with the help of medication, he can live a healthy life with one of my kidneys for at least 18 years. There have also been cases where people have had a transplanted kidney for forty years! It’s quite simply amazing.

When the procedure is done, our son will get better relatively fast, because kids regenerate quickly, whereas I will need more time. At least six to eight weeks of sick leave and if there are complications, maybe more.
All of this is paid for by the state. Our tax money to ensures that we get this done without having to pay any money at all ourselves. If I get ill later on in life because of the procedure, all medicine and medical aid is absolutely free. That is just fantastic.
There are of course som risks involved, but that’s true about a lot of things in life. That’s also why I’ve been to the hospital more than five times over the last two weeks. The hospital needs to be certain beyond any reasonable doubt that I’m fit to be a donor. Even my sister’s malignant hyperthermia, a condition that almost sent her into a coma when she underwent a tonsillectomy, is taken into consideration. Malignant hyperthermia is caused by some forms of anaesthetic, so they are taking every necessary precaution there as well, to ensure I don’t suffer from it during the procedure. Our son has already had two procedures where he’s been under sedation, so he’s in the clear, but they aren’t taking any chances there either. We are well taken care of.

My remaining kidney will have to do the work for two kidneys, meaning that I need to make sure I stay healthy. Today I was also told that I have a somewhat reduced kidney function, nothing out of the ordinary (many men my age have much more reduced kidney function and certainly a great deal have much worse health), but it means that I need to look after myself. There’s nothing that indicates I won’t be able to live a long and healthy life.
And so will our son. Eighteen years with one of my kidneys and then another eighteen with one of my wife’s. Then he’ll need a kidney from someone else, that is, if medical science hasn’t progressed to the point where they can be grown. And that seems to be on the way already. I’ve been motivated to exercise more and eat even more healthy than I already do. My wife’s and my enthusiasm for health and staying in good condition is starting to rub off on our children. It’s the best gift we can give them and ourselves.

One day in the near future, we will have a normal family life again. Our son’s need for medication will be reduced by more than 80% and much of the discomfort that leads to frustration, anger and sadness now will be a memory. One day in the near future, our two little kids will be running around in the garden, and our son won’t be exhausted every day he comes home from school.
Two years ago, this part of our journey began. Two years have passed, and we have gone from insecurity, doubt and fear, to certainty, optimism and hope. We count our blessings every day, for being so lucky to have been born in a country where medical help is free, and it is the best help available in the world.

Oh, and one last thing: become an organ donor! It’s the greatest gift you can give anyone. I’m not only giving my son a kidney, but in the event of my death, I’m giving away my organs to people who need them to survive. You should too!