Tuesday, January 22, 2019

A Kidney For Scott

Costa Rica, November 2015
I can't believe the last time I wrote here was in 2012! So much has happened... we got married in Costa Rica, bought a new house, and together now have two amazing nephews, and an adorable niece!

Scott's kidney function also took a nose dive. And just recently was diagnosed with end-stage renal failure. We knew one day it might happen, but it certainly took us by suprise at how fast everything started going downhill witht his kidney function.

I'm going to recap everything that I already posted on the A Kidney for Scott Facebook page and will continue to update here moving forward.


BRIGHAM & WOMENS TRANSPLANT ORIENTATION DAY

On Monday, January 14th, we attended an all-day orientation with the Brigham and Women's Hospital Transplant Center. It was long, emotional, and very educational. We met with the entire team from the surgeon, the nephrologist, social worker, financial planner, pharmacist, nutritionist, and our caseworker who will oversee everything. As completely overwhelming the experience was, everyone was so kind, helpful and caring and we feel confident that Scott will be in the best hands.

Scott completed all his tests (yesterday & today) and his case will be presented in front of the Transplant team on Friday (1/18) to be approved to be added to the transplant list. The problem is once on the list, it can take 5+ years to get a kidney.


His kidney function is very low and they feel he is currently living off of reserves as to why he’s doing so well health-wise, but if he doesn’t get a transplant lined up, there is a strong chance he will need to go on dialysis. While dialysis can save lives, it is extremely unpleasant and actually decreases life expectancy compared to going straight to a transplant (which all his doctors are rooting for).


LIVING DONOR

The best scenario is to find a living door. Someone who is alive who is willing to donate a kidney. This will give Scott the best chance at life. There are lots of other factors that go into this, such as the health of the donor, etc, but all that gets sorted through the screening process. He needs someone with Blood Types A or O. They can have tests done at their own doctor and if they pass the screening, they would eventually go into Brigham & Women’s for a work up. They are really pushing this as the sooner we can get potential donors screening, Scott gets closer to surgery eliminating poor health and the need to go on dialysis. Right now he feels pretty good… and I think the doctors are impressed by this… but knowing his kidney function is as bad as it is, we are racing against time.



THE SURGERY

Once he finds a kidney, Scott’s surgery will be a bit more complex. He’ll be in the hospital for 7-10 days and there will be A LOT of various medicines he will be given, some to be weaned off of before discharge. Unfortunately, he will be on two immune-suppressant drugs for the rest of his life. These will ensure his body will not fight off the kidney. These meds do have a very slight change in causing cancer: both skin cancer and lymphoma. The chances are slight… but it is a reality. Once he is discharged he will need to go to clinic 2x a week for the next 3 months or so and then things will start spacing out. For the first 3 weeks, I need to be with 24/7 in case of emergency. I will need to take him to all of these appointments. He will need to be constantly tested to make sure his body isn’t refusing the kidney and sometimes some meds need to be adjusted if they feel something funky is going on. For the 1st year there will be a lot of monitoring but after 4 weeks he can typically go right back to his normal lifestyle.


The great thing with a living donor kidney is the moment they add it to his body, it will kick in. They have to lower his immune system dramatically and this allows his body to not attack the kidney. Over time they can add back some of his immunity - but never all of it or it will reject the kidney. The pharmacist was pretty amazing in explaining all the drugs, the side effects, the stats… it’s a lot, especially for us who try to live a holistic lifestyle, but life is not always in our control and we are submitting to what is best for Scott. One of the weird things we learned, is that they don’t actually remove his kidneys… they add the 3rd one in so he’ll have 3 kidneys in his body. Kind of funny and strange. The other great thing with a living donor is the surgery can be scheduled around everyone’s schedule… it’s not an emergency, whereas if he was on the list and he got a call at 3am that his name is up on the list and he needs to get to the hospital stat (though again…. that is 5+ years out so really scary).


LIVING DONOR MYTHS

Some important things for donors to know…. Scott’s insurance covers everything. You will spend a few days in the hospital for the surgery, with minimal pain, and in about a week you go back to life as you know it. Nothing will change at all. We were born with two kidneys but only need one to live a full healthy life. And our bodies are so amazing that once a kidney is removed, the remaining kidney grows a little in compensation. They actually test both kidneys and leave the stronger one in and donate the other. Being a donor does not change your quality of life, AT ALL. there’s a lot of myths out there about that, and I just want to clear the air. You will live your life just as if you had two kidneys.






DONOR SWAP

The other thing there is which is pretty new and actually pretty awesome is a swap program. If you have a blood type that doesn’t match his, you can donate your kidney to the bank, and get the kidney he needs in return from the bank. This is a great option (and it saves two people), but unfortunately, it takes about a year… so while it’s an option, the living donor is what is going to give him the healthiest, strongest chance at a long healthy life. There is also the chance that a donated kidney may only last a certain amount of time. Some last 15 years, some less… and one man had a kidney transplant 40 years ago and is doing awesome. So there’s always the chance that he may have a 2nd transplant at some point in his life. But I refuse to look that far down the road right now… we all know Scott is amazingly strong and healthy and he’s proven to us that he’s a superhero. All we need to do is find him a living donor, get his surgery scheduled… and Scott will be back better than ever!


COULD YOU BE A MATCH?

Scott is blood type A+ and can be matched with types A & O (+ & -). Are you type O or A and want to see if your kidney is a match for Scott?

Here is a link to the pre-screening that gets the whole process started: https://bwh.donorscreen.org/register/donate-kidney

You will need is DOB which is 8/15/77.

I know this is a lot to digest, and a lot to ask… but Scott’s life depends on it… and we know Scott would do absolutely anything for the people that he loves, no questions asked.





SHARE

Please share! Please help us get this info in front of more eyes because there is someone out there that has the perfect kidney for Scott & the heart to donate it to him.

https://www.facebook.com/AKidneyForScott/


DONATE

Click here to support A Kidney For Scott Support Fund (organized by Paul Fitzgerald) to help offset the mounting costs: http://bit.ly/2RKyydt


With love & gratitude,
Jax