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Monday, October 8, 2018

Sprung

So take
These broken wings
And learn to fly again
Learn to live so free

-- Mr. Mister

The Gift of Life

On September 20, 2018 I received a priceless gift: a kidney transplant. My niece's (Erin) husband, Rob, donated one of his. You have to imagine for a moment what a blessing this is, such a display of human kindness and bravery. This was the best option for my health, as encouraged by the Kidney Transplant team at Duke Hospital: a living donor. For him to do this is beyond thanks, beyond any words really. You have to seriously imagine for a minute what it would be like to give up one of your major organs for someone.

Rob answered that call. You hear people say "thank you isn't enough", and it's true. There are simply no words to cover this. Rob and I talked about this. He's a humble, unassuming man. Going through this process with him and Erin was remarkable.

I first found out about Rob's intention in June 2018, with his rigorous testing scheduled at Duke in mid-June. The time between June and September was probably the most stressful for me in my entire life. It might seem like it should be cause to celebrate, and it is. However, when the possibility is so close, and remember the intense scrutiny we're both under by the transplant team is so intense. They will boot potential donors at any sign of a health risk (which is proper, to protect their health).

After about 6 weeks, however, Rob was approved. He is healthy young man. When we got the news I was stunned, barely able to get my head around it. The surgery was scheduled for Sep. 20, and we waited. Like waiting for Christmas when you're a child, the days wore on. Judy and I know better than most that anything can go awry with medicine (with anything in life, really), and we tried not to think about those things. We kept this secret from almost everyone as long as possible, just not to get ahead of ourselves.

The day finally came and went, beginning at 5:45am arrival at Duke on September 20. Then the recovery began. I was in the hospital 4 days, Rob went home the very next day after our surgeries. The transplant team at Duke does remarkable, life-changing work. That program is so extensive and refined, and everyone on that team is top-notch. The skill of these people is remarkable; I call it Really Big Medicine.

Rob stayed with us after Erin returned home to their family (they have 2 little ones), and my brother and mom were also here tending to us. My brother was primary care-taker for Rob. I really enjoyed having the time to visit with Rob for the week.

We share something now which few people do.

Escaping Dialysis and Other Things

Kidney transplant technically isn't a "cure" for kidney failure, it's a treatment. As my dialysis doctor put it, you are trading one large set of problems (dialysis and its effects) for a much smaller, more manageable set of problems (eg, life-long immunosuppressant medicine and its associated infection risks). In exchange, you break free from dialysis and get your life back. Which is high order medicine. And taking the smaller set of more manageable problems is an absolute no-brainer.

I'd been on dialysis for 4-1/2 years, and I forgot what it was like to not be. I did it at home, overnights, which is better, but the fact is: all dialysis sucks. It took 10 hours a day which puts a major crimp in your life, takes away your free time. Not to mention many other "mini" time-wasters associated with it. And the long-term prognosis for dialysis patients is grim.

Most people associate kidneys with clearing your blood of the toxins which build up in your body every day, and eliminating it in urine. And this is true. However, kidneys perform several other key functions in your body you might not be aware of. All these do not work or are diminished in dialysis patients:

  • Regulation of blood volume
  • Regulation of blood pressure
  • Regulation of the pH of the blood
  • Regulation of the ionic composition of blood
  • Production of Red blood cells
  • Synthesis of Vitamin D
  • Excretion of waste products and foreign substances

Being on dialysis also has other effects, none of which are good (or pleasant). Other than keeping you alive, there are zero redeeming factors to dialysis. None. There are plenty of downsides, including
  • No appetite
  • Poor digestive activity
  • Anemia (no energy) due to low red blood cell count
  • Uremia (ill feeling)
  • Frequent metallic (or other nasty) taste in the mouth
  • Trouble concentrating, reduced cognitive ability
  • Poor sleep (try sleeping in a room with a machine running or itching)
  • Tons of supplies crowding the closet, dealing with orders, deliveries
  • Twice a month appointments at the dialysis clinic
  • Crappy diet (no milk, cheese, ice-cream, chocolate, ...)
  • Poor blood numbers, notably high phosphorus, potassium
  • Itchy skin
  • Poor skin health
  • Water retention / limited intake
  • Frequent overnight severe cramps in calves, shins, ankles (yes ankles)
  • Cough
  • Catheter care every day and risk of infection
  • Depression
  • Hopelessness
When I first started dialysis I felt a certain way. Over the months, however, I could feel my health declining steadily. These things crept in over time as my remaining kidney function continued to decline. It had gone so far down I was really having trouble keeping it together, especially while working full time (80% of dialysis patients are unemployed). Luckily, I was working at home almost all the time, but still, I couldn't make it through the days any more without a nap at about 4pm every day due to exhaustion (anemia coupled with lack of sleep).

The day after our surgeries I could already feel the difference. Since, all of the side-effects were going away. I didn't feel like crap any more (look up uremia here), urine was pouring out my catheter (which I had for 3 days, yuck), my dialysis catheter was gone from my abdomen.

Here is the last vestige of dialysis being boxed up and sent back: the dialysis machine. Good riddance and let's hope never to meet again, no offense. What a day that was; all the supplies have been removed, and this stuff is gone. This is a habit which was easy to forget, and it's true cause for celebration to have it gone.


Seeking Normal

A little over 2 weeks out, many of my blood numbers are normal again, and a few are still drifting towards their normal. My energy level and a simple desire to "do things" has returned. Every single one of those downsides listed above has disappeared, or is heading in the right direction.

And no dialysis.

Since coming home September 24 (it's now October 8) I have lost 5.5kg or about 12 pounds. Almost all of this is water weight, water that was "hiding" in my body, despite the dialysis removing excess water every day (usually I would remove 2kg per night which is about 4.5 pounds). All this in addition to drinking and peeing out 2-3 liters (0.5 to 0.8 gallons) of water per day. Drinking this much water while on dialysis would have been impossible; when they told me on day 3 to start guzzling water like this it took some will power to do it. I was in the habit of not drinking much water; my kidney could barely produce 400 milliliters of urine per day at the end. Now that Rob's kidney is working 24x7, it's properly regulating the fluid levels in my body and I'm peeing out over 2 liters every day, which is amazing to me.

So far my blood pressure has returned to normal without any medications. It was high when I came home, possibly due to the added fluid, but now it's perfect, and let's hope it stays that way.

Moving on and Up

This gift is a gift of life and this whole transplant experience at Duke has been a medical marvel coupled with human kindness, love, and bravery. Difficult and frustrating to navigate by its nature, but finally the transplant is done, and recovery is underway. So far, both Rob and I are progressing well in our healing, and things are positive. We pray it keeps heading that way.

Breakfast of Champions
The risk of rejection is highest in these early days, so the transplant team keeps a close eye on it. One of the "more manageable set of problems" I have now is a massive amount of medicine I have to take, most of which I'll be on the rest of my life. But it's a no-brainer to do, it's so easy. Have a look here at my new "breakfast of champions". I take about 1/2 this many at bedtime, too.

Most of these are anti-rejection drugs which suppress my immune system. There also are anti-viral and anti-bacterials to prevent certain infections. Immune suppression is vital because even though Rob was a "perfect" match, your body does not like to find things which aren't yours, and it is very particular about it. These drugs essentially "hide" Rob's kidney from my immune system, keeping it from being attacked (rejected). Over time some of these medicines can be reduced or removed, but for now, this is it.

This is one amazing experience. Back in 2014 when my kidneys were first failing, a transplant seemed impossible, and I couldn't get my head around it, anyway. But, 4-1/2 years on dialysis has a way of changing your perspective on things. And I give special thanks also to the transplant team at Duke for taking on my case, which is very complicated. That team is so top notch and they work tirelessly to change people's lives for the better. They are so good at working with both donor and recipient through the whole process, making sure you get what you need, have the information you need, and the support you need.

Random Thoughts

People often ask us how can they help. A couple of the things I feel strongly about:
  • Donate blood. I received another unit of blood the night after my surgery because my red cell counts dropped for some reason (along with my blood pressure, to about 80/40, yikes!).
  • Become an organ donor. One person's choice to donate their organs can save up to 8 people's lives.
  • Evaluate your diet. I've never been a health-craze kind of person, but having to adjust to a dialysis diet over the past several years has opened our eyes to a lot of things. Eating fresh made food is best, though it takes time, planning, and a bit more effort, but it's worth it. Much of the prepared food we all eat is full of shit you don't want or need. Just take a close look at the sodium or sugar or simple carbs in what you eat. Fast food is poison, full of so much
    sodium it will make your head spin, and your kidneys very sad (e.g, my limit [and your probably should be too] is 2300mg sodium per day). There is an epidemic in this country, mostly due to the poor quality of prepared / fast foods, so many people are overweight because of it, and the new cases of Type-2 diabetes are skyrocketing partially as a result of this (along with high BP and other factors). And 50% of the new dialysis patients are diabetics. Protect those kidneys folks! Take it from me, you do not want to lose them. I always say: kidney failure is like cancer no-one is afraid of. Enough of my soap box.

So Many Thanks

Once again we found ourselves being supported by family, friends, and church. As usual they rallied to us with meals, prayers, cards, and anything else we needed. It makes such a huge difference having a support system like ours, and we are so very grateful. Everyone we know celebrated this breakthrough with us. We've had so much go wrong 5 years ago, but this is a major step in the right, positive direction, and we pray it keeps going that way. I also want to remember that I had several other people try to donate, also, and to them also I am so grateful. We're blessed to have them in our lives, and I can't thank them enough, either.

But, in the end, one person made it through, proved to be a real-life hero. Rob knows how grateful we are, and again there aren't words to thank him enough. He has given me the gift of life, the gift of hope and renewed strength, and a chance to just live normally again.

After what we've been through, can you imagine anything more priceless?