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John Maw

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A note from John Maw:
I have been in End Stage Renal Failure for 12-16 months now, the vast majority of which I was unaware of my condition. Tomorrow, I am going in for a pre-op meeting, and if all goes well, I will take part in a live-donor kidney transplant September 6th.

Since March 4th, I have been receiving dialysis treatments 3 times a week, for 3.5 hours. Dialysis is a mechanical process that mimics part of your kidney function. I also receive various drugs to help balance my body’s homeostasis. Membership in Club Dialysis runs about $6k/month, and the meal plan is tops!! My time with my kids has never been so valuable, but I spend a good deal of my off-time just recovering from the sessions. Dialysis is performed through something called a Central Venous Access (Catheter) that was inserted into my chest while I was in the hospital in March. It runs down to my heart, and is prone to infection and prevents access to things like swimming, baths, showers, kite-surfing, wake-boarding…you get the picture. It’s like a big piercing, way cooler than all those other nipple-pierced posers.

In 2004 I was diagnosed with a fairly common disease called IGA. There is no known cause or cure for IGA. Doctors hardly understand how it works. It is named after the Immunoglobulin A, which is an antibody in mucosal immunity. Everyone has it, and it is triggered with respiratory colds, infections, mucosal sicknesses. For some people, the IGA clots in the kidneys and scars over. Kidney capacity decreases with each sick event.

In 2008, I had a kidney biopsy that looked pretty good. I was told I would outlive my kidneys. In an ironic twist fit for daytime television alone, I lost most of the functionality in the following 2 winter seasons, and I am down to around 7% functionality currently. You need around 11% or 12% to function normally, the average 40 year old probably has 80%+ functionality.

I feel very fortunate to be alive. We have this incredible ability to adapt, and I spent months adapting as I acquired symptom after symptom, getting sicker and sicker. My health had slid to a pretty bad place, and my mind and body had adjusted, allowing me to believe I was just a bit under the weather. In reality, I had been near death for months.

My initial hospital ER trip was awesome. I was soooo popular. I became quite close to the Internal Team, the Nephrology Team and the Vascular team, as well as about 35 Phlebotomists, nurses, aids, etc. That kind of luxury costs about $6k/day, and my introduction to a renal diet was just the icing on the cake. 5 days staring at hospital walls, kicking around your life and mortality…highly recommended. That was a big growth event for sure.

I should do a quick Obama plug here. I was fortunate enough to be among the first to enroll in the first version of “Obamacare.” I was unable to get common provider insurance, and just weeks before entering the hospital I gained access to this Federal Insurance Program (HIP). The costs have been high, but nowhere near the charges I have racked up. This also covers my transplant costs (mostly-I will get to that in a minute). My hospital expenses to this point would bankrupt most families if they did not have insurance…and things have been pretty light up to this point.

Most transplant candidates (including myself) become a part of “the list.” The list is for cadaveric and the occasional good-Samaritan Live-donor transplant. People in Utah might spend 15 months on the list, California may be 7 years, New York, 8 years. I have been accumulating time on the transplant list while a live-donor has been going through a pretty rigorous process to establish candidacy. Cadaverous graft transplants outnumber live-donor transplants by some outrageous number, but living-donor grafts outlive the cadaverous grafts. Doctors believe it has to do with the transport time, from donor (cadaver) to recipient.

Kidney transplants are the most common transplant. Most people receive anti-rejection drugs after receiving a graft transplant of any kind, including heart, lung, tissue, liver, etc. These drugs ultimately kill the kidney, so on a long enough time-line, all transplant patients will need a new kidney…that is at least until technologists can master the test-tube kidney. This makes for a lot of needy folks. The body only needs a single kidney to function, and really, a portion of a kidney would be fine. We are born with many times the kidney functionality we need, but with time, that functionality decreases, but very little for a normal human.

Don’t get me wrong, dialysis is quite a gift, but over the long haul it takes a toll on your body. The 10.5 hours of weekly cleaning vs normal 24/7 kidney function is no comparison. The efforts of friends and family to make life comfortable and minimize the impact of the disease has been enormous, and at the top of this list is Tori Neese Bergstrom.

I don’t know if I was even out of the hospital before my donor attached herself to me. Tori has been driven from the beginning to help, and her personality and momentum has been so awesome in charging forward. Tori is determined and strong, and she has powered through a rigorous matching process on her own. Tori has had the privilege of peeing in a cup for 2 or 3 straight days, enduring long psychological exams, pokes, prods, blood pulls, injections, kidney tests, body exams, and very expensive full body analysis. Not to mention just hustling all over and jumping through all the hoops the transplant folks have thrown at her. Her motivation is from another planet.

Having someone step up to be a part of your life in this way, it leaves me speechless. We go through life, contemplating the different trajectories that lie ahead, in hopes of preparing ourselves for those what-if scenarios. I would consider myself particularly involved in over-thinking everything, but never once had I considered the shoes I would be in at age 39.

Imagine a day when you are no longer self sufficient, and imagine what you would have to do to adapt, to let people into your life to help you. You didn’t ask or will this condition of yours to happen, and now people are coming out of the woodwork to help. Maybe like having a baby…things are happening, people are diving in and out to help, grabbing things, disappearing, events are beyond your control and abilities, modesty is long gone, and functioning without this team would be extremely difficult.

Now consider and acknowledge, that their giving is of their own will and accord and path, and to some extent, it has nothing to do with you. Tori and I are friends, but I have felt very awkward at times because I don’t really have any business talking about this thing between us, and that is the problem. We are both on entirely different paths right now, and the only things to really share is how screwed up the medical system is. Our missions are entirely different, and they just happen to cross for a brief moment while we are lying side-by-side on the operating tables. All subjects are completely comfortable for conversation with us, but I realized months ago, her motivation and her experience and what she takes from this, that is all hers, something of her own design.

Tori has been calm and comfortable and determined for months. I get up in the morning and try to manage a decent diet, some drugs, my mental capacity…my time-line goes out about 10 hours, while she is considering the short and long term changes to her life, the benefits and the pains, and managing the impact to her family as well. Tori and her family are so giving and kind and adept. I am at the same time, so proud of her, and thankful, and jealous, and awestruck.

I hope Tori has a moment to lay down some of her thoughts up to this point. I have little more insight than anyone on what her experience and thoughts have been.

Yes, I have skipped huge stints of weirdness in this adventure, but you now have the highlights…the details would bore you to tears. You can imagine the fine print between events. Today, feel very fortunate. I have gotten down to my ideal running weight (-25 lbs) and all things considered, I am very healthy, and lucky, and a bit more humble.

One last plug, for my wife: Rebecca has had to be the super parent here for some time, and I am so proud and thankful she has been able to deal so well with this new lot in life. I have been at times any combination of scattered, useless, ornery, lost, confused, sleeping, puking, bent, delirious, selfish, lost, insane, etc., etc.. She has helped me when I have lost my spirit or strength, and kept the Maws rolling as a functional and healthy household.

OK, so what is happening now:

Our best number crunching tells us we will be around $40k short for the transplant procedure. The donor costs are somewhere around $80-$83k of the $275k operation, and my insurance plans to cover up to $40k. Drug costs for the rest of my life are some insane amount, but I think my real costs are around $7,500/year. So…

A fundraiser/send-off party has been put together to give folks an opportunity to perhaps see me and Tori for the last time ever (just kidding, this is a perfectly safe operation). You are invited, and we hope you can make it out to share a glass and celebrate a happy beginning. Come for the wine, come for the friends, come to see what its like to hug a transplant patient and donor.

A note from Tori, the donor:
So John hinted that he thought I should also write down what my experience is about. Reader beware, I am not the writer that he is and I like to be kind of a smart ass. First and foremost I believe that this is John’s journey and I am fortunate enough to be along for the ride. He is also very correct in stating that our experiences with this are widely different. I don’t have to face my mortality every day.

For years Eric and I have said that if given the opportunity to give a friend or family member a kidney we would do it. It is almost as if we knew this opportunity was going to present itself. When Rebecca emailed us about John’s condition I immediately asked what his blood type was. John is O- and can only receive a kidney from someone with type O blood. Eric is A and I know he would have stepped up if he was compatible.

So for the next couple of months I went through the testing without John’s knowledge. We even trained for the Ogden Marathon while I grilled him about his kidney disease and dialysis. I was also trying to figure out who my “competition” was. For those of you that know me, this was probably the longest I kept ANYTHING a secret.

Then at the beginning of May Rebecca invited me to attend a transplant orientation. When John saw me walk in his thought was, “Oh no, has something happened to Grandma Joy?” Grandma Joy is mine, Shelly Logue’s and Ali Barber’s grandma, but functions as EVERYONES. I thought that was very sweet. Then I said, “surprise!” John’s reaction was that he had been hoodwinked.

Throughout the meeting I could tell that John was uncomfortable with the turn of events. At that point I decided to tell John what my motivation was….

When I was five years old my mother was diagnosed with a stage four brain tumor and was given six months to live. Ali was just eight years old and little Brad only 2. Very similar to the devastation that John, Rebecca and there three little kids have had to face.

My parents were not going to accept this death sentence. They spent the next few years traveling back to the University of Maryland getting cutting edge and sometimes controversial treatments for my Mom. They were gone for a week at a time and in the early years this was every month. My extended family all took part in raising us. I imagine John’s dialysis is having a similar effect on the Maws.

During this time my Mom was unable to qualify for much insurance. Back then you could be kicked off of your insurance if you had a terminal illness. It took nearly a decade for my Dad to pay off the medical bills, even with help from my Grandparents. This nearly bankrupted my family, but my Dad being awesome and amazing always made it work. This type of thing can financially destroy a family.

My Mom passed away in 1991 when I was 16 years old. She had several brain tumors at her time of death. I am very grateful for the extra 11 years that we had with her. It seems humorous to say, but no one could have donated a brain to save her life. However, if that was possible I know someone would have. I feel that I have the opportunity to help the Maw children have long and happy lives with both John and Rebecca. To help give them back that time that dialysis takes from them. To help give John back his energy and so that he can even eat pizza again, of all things. To help give them back their Dad the way I wish someone could give me back my Mom.

Going forward I am not fearful, but excited. I think I have always known throughout this process that I would match and this would work out. I am meant to do this. Cheesy I know, but it is how I feel. I am thankful for my much supported husband, family and friends. You are all the best!!!!

So on Tuesday Billy the Kidney will get a reprieve from diet coke and go to a more aspartame free home. He is trading up. Billy will be leaving behind my right kidney, The Sundance Kidney. She is left to fend for herself, but they both will be stronger and more productive than ever before!