Kidney Transplant

What an interesting day it was. I remember receiving the news like it was yesterday, although it happened about 4 years ago. I had gone to the doctors for routine  blood work and a couple of days later received a call from a nurse (this is never good). She said that my creatinine was very high. What? Creatinine? What’s that? She said it was an indication of kidney function and my kidneys were at 32% and failing. You’ve got to be kidding me. I’ve been a relatively healthy guy, I never get sick. I’ve never smoked or drank. Why are my kidneys failing? I feel fine.  Looking at my watch I realized it was time for my wife and I to go out to dinner with my parents. No time to think about this now.

After dinner my wife and I immediately went home and started Googling kidney disease and everything associated with it. What we found was that normally nothing can be done to recover kidney function.  No cure, no reversal. I’m a big believer in natural cures and checked all my resources. Nothing. Hmmmm, what to do? I was told to make an appointment with a nephrologist which I did.

The nephrologist ordered all the blood tests again, I had an Ultrasound, jumped through the medical hoops and waited. One part that seemed to stay with me  was  during the Ultrasound the technician asked if anyone in my family had Polycystic Kidney Disease. I said “No”, and asked her if that’s what she saw. Her answer? ” that’s for the doctor to say”. Nice….tell me but don’t tell me. I heard her loud and clear, so that same day we started researching Polycystic Kidney Disease.

Polycystic Kidney Disease is usually hereditary. Did anyone in my family have it? Nope. I just so happened to be born missing the gene that tells my kidneys to stop growing. During my next doctor appointment, the doctor confirmed the diagnosis of PKD. He stated that my kidneys will likely be at 10% within 3 years at which time they would put me on a transplant list. Those words were surreal & numbing.

My wife and I went into research mode again. Are there alternatives? Cures in other countries? While researching we learned that transplant patients have to be on strong immunosuppressive medication for the rest of their lives. This makes the immune system stupid enough not to recognize the foreign kidney but also stupid enough to get everything from rashes to cancer… not to mention the cocktail of immunosuppressive drugs cost about $6,000 per month. This was all scary. I was not going to trade one illness for another.

I started trying everything to change those critical levels in my blood work. I gave herbs a shot that made big promises, I went on a vegan raw diet, I took special detox baths in herbs (the skin is considered the 3rd kidney). Acupuncture was also attempted.  A well-known naturopath doctor put me on a grape fast for 30 days. All this and nothing changed my levels, they just kept going up.

During my internet searches, I learned that they were doing ground-breaking research in India. In this research the doctors were combining stem cell transplants  along with the kidney transplant, this allowed the recipient to be drug free and achieve tolerance (the foreign kidney working in harmony with the recipients body). But India? Would I? Could I? Should I? That’s a long way from home.

As I was looking further into the possibility my dad sent me an email regarding a study in Chicago that was doing something very similar. Little did he realize that email would change everything. (Thanks dad!). I studied this clinical trial and the doctors involved and eventually called them. This is what I was looking for and it sounded great. My brother would hopefully be my kidney, bone marrow / stem cell donor as long as he was a match. The day my brother found out about my kidney problem, he offered to be my donor without a pause.

Needles

Both my brother and I went in for blood work in our perspective cities. My brother Joe lives near Niagara Falls, Canada and I live in Tampa, FL. Each of us had to sit through the withdrawl of 21 vials of blood, more vials of blood than I’ve ever seen.  Would he be a match? Would I be accepted into the clinical trial? What were the risks?

It was a day of relief when word came back that my brother was a match. Finding a match is now easier than you might think. Of course the donor needs to be willing and healthy, but now they have found a way to work around different blood types, being the same type is now just considered a plus. My brother has always been very healthy. He’s never touched a cigarette or been a drinker. I don’t think his mouth has ever uttered a curse word.

 

My brother

A few words about my brother. He is the kindest, most humble and wisest man I know. He’s a year and a half older and about as giving as any human being could ever be. His wonderful family supported both of us all the way. Anybody who donates an organ so another may live should get a free pass into heaven if I had any say. Thank you Joe!

 

Off to Chicago

I was scheduled for transplant on December 1st 2011, but it was not going to be THAT easy. This was more than a transplant. Being part of a research program  required much to do prior to transplant day. I had to be in Chicago for almost a month beforehand. Why? Here comes the fun part…NOT.

In order to make room in my body for my brother’s stem cells they had to kill mine. They had to kill my immune system. Yes, my white blood cell count needed to be zero. Now, just how do they go about doing that? High dose chemotherapy and full body radiation, that’s how. Oh great. This is going to be a riot. The way I saw it, it would be short term pain for long term gain.

By the time I had to go through chemotherapy and radiation, my parents had driven to Chicago from Canada to be with me. They were wonderful caregivers and gave great moral support. We laughed as much as we could through it all. My family and I are big believers in laughter. We can find humor even in dark times. Call us crazy…we’ll probably agree with you.

The chemotherapy was actually simple… for the first day or two. I wondered why people had such a hard time with it. It didn’t bother me a bit. Little did I know that it was building in my body and the destruction it was causing within me, I was so naive. I had high dose chemotherapy for 3 days, a couple days later… I felt like I was ready to die. If I closed my eyes, I could see my grandmother in heaven waving me in. Not really, but it was close. At my darkest hour I would have begged them to pull the plug if I had the strength…and if there had been a plug.

It was one day before kidney transplant surgery and if I wasn’t sick enough it was time for full body radiation. I felt so terrible I didn’t care much what more they were going to do to me. How much worse could it get?

I was put in a clear coffin looking box (appropriate). I slept during the 30 minutes they blasted my entire body with radiation. I  felt nothing because I couldn’t feel worse.

The next day I was actually looking forward to surgery. I just wanted to be put under anesthetic to escape the pain I was in. My brother went into surgery about an hour before I did. I wanted desperately to say “thank you” to him once again before I went in for my surgery but it was impossible, I was almost comatose.

I vaguely remember being wheeled down in a bed to the surgery prep room. I don’t remember what my wife or my parents may have said or what I may have said to them, at that point my fever from the radiation was so high, things became a blur. Maybe I said nothing…maybe I did my keynote for them…hard to say. But my wife did take a picture of me smiling giving a thumbs up before I was wheeled into the operating room.

The next thing I remember is a nurse waking me up in the recovery room saying that the transplant went great. My first thought was if my brother was OK, the nurse assured  me that  he too was doing great. Whew…what a huge relief. My beautiful wife managed to convince the nurses to let her come into recovery to be by my side. When I saw her, I felt like everything was going to be okay.

I was in the hospital for five days. My brother was released from the hospital 24 hours after his surgery and was out shopping The Magnificent Mile with his wife Heather a day or two later. I had to stay local in the heart of Chicago for 5 weeks to have daily lab work and be available for the many appointments with my doctor. During this time I was required to have a caregiver at all times. My wife and parents shared in that sometimes not so wonderful duty. God Bless each of you for what you had to put up with. I won’t give the details here but, well…let’s leave it at God Bless you. They are all Saints. And my brother Joe, you have given me life. I’ll never forget it. What a gift. I get choked up just thinking about it. You will always be my hero.

 

Home Sweet Home

When the research nurse said I may be able to go home the next day, I couldn’t wait. I wanted my bed. I missed home, my family and friends. When the research nurse walked out of the office to consult with the doctor and confirm my release day, I pulled out my iPhone and bought a ticket immediately. I took the NEXT flight home. My flight left in 4 hours! The nurse came back in and confirmed that the doctor was allowing me to leave the following morning. I said, “great” with a huge smile! “I just bought my ticket….but I take off in 4 hours”. She just laughed…she knew me by then.

I arrived home 5 weeks after surgery and I was by no means myself yet. But it was wonderful to see my wife and daughter again. During the first month, I was terribly weak. I passed out 3 times due to standing up too fast. I was anemic for a while due to the chemotherapy;  it caused me to be constantly cold, so much that you could see me wearing a coat and knit hat in my house in Florida. And the immunosuppressive drugs? Well, let’s just say they throw you off your game a bit.

You know what? It was all worth it. I sit here writing these words 5 months after surgery feeling 100%. I can’t really exert too hard yet, (give me a month) I can’t do a long run, but I feel fantastic. In fact, the lack of energy I have from time to time is because of the medications I’m on small amounts of anti-rejection medicine but I’m being weaned off them! I’m already off 75% of the medications I was on immediately after transplant. My doctor will be taking me off even more in a month at my 6 month post-op appointment. He couldn’t be happier. My levels are fantastic. I went back to work 3 months after surgery and it felt great.

 

Update: 12 months after surgery

Do I still feel 100% percent? No. Make it 150%. I’m full of energy and off all meds. Oh happy day!

 

Lessons Learned

What did I learn through it all? Lots. I learned that a loving, caring family should be cherished. Their love is unconditional. If you don’t have a loving family…forgive, forget and love.

I learned that faith in God through the good, bad and ugly is the greatest asset man can have.

I learned that making a chemotherapy playlist on my iPod kept me positive.

I learned that a sense of humor even when things got dark gave me a new outlook. It makes the darkness turn to day.

I learned that passing out in the shower and being woken up by 4 nurses while I’m butt naked is embarrassing.

I learned that a positive attitude, expecting the best results removes fear and worry.

Most of all, I learned I am blessed beyond measure. Life is a gift.