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Family and friends of Bryan Dowdle are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with a Transplant. Bryan has chosen to fundraise with Help Hope Live in part because donations are tax deductible for contributors and will only be used to cover medical and related expenses.
Bryan was born with kidney failure and not expected to survive. Since he inherited stubborn from both sides of the family, he defied the odds. After 4 years on dialysis and many many surgeries he got his first kidney transplant from his mom. He was 5 years old.
At that time they told his parents to expect that kidney to last 10 years. Of course, stubborn factors in again and he has gone 28 years with this kidney!
We often say that Bryan has not read the medical text books since he just keeps doing his own thing, avoiding dialysis for 10 months longer than they insisted, avoiding surgeries they insisted he would need, only two bouts of an infection that afflicts all those on peritoneal dialysis over 4 years!
Bryan has autism and is developmentally disabled and his doctors weren’t sure how well he would function, but he is now working a few hours a week, he loves to play board games and video games and argue with his younger brother. He didn’t really talk until he was 5 – coincidentally after his transplant, but he is making up for it (especially when it comes to talking back to his parents!)
Sadly the time has come that it is failing and he needs a new one. We are really hoping to avoid dialysis, so we are hoping to find a living donor!
The wait for his blood type is 8 – 9 years.
We are lucky enough to have insurance, but it does not cover everything. Bryan will need to travel out of state for his transplant and of course he will need at least one person with him!
We also will need to pay for his donors travel and lodging as well.
As his mom, I am scared to death that he needs to have another transplant. Medically things have been so stable that I have forgotten the dread, the fear, the uncertainty. Just waiting for the other shoe to drop. Having financial help to pay for this transplant would take one major worry out of the equation.
Bryan saw the surgeon two days ago and is set to have his dialysis catheter placed next month. He might not need to use it right away, but we since it will take a few weeks to heal, they want to be ready.
Bryan's nephrologist sent in a referral to a surgeon to have a peritoneal dialysis catheter placed. He said that it normally takes about 6 weeks from when he places the referral until they can start dialysis because the catheter needs to heal before they can use it.Peritoneal dialysis is done at home overnight. Fluid goes into a catheter in the abdomen, sits there for a certain amount of time, then the dialysis machine drains the fluid and puts more back in. Bryan was on peritoneal dialysis at home for 4 years when he was a baby before his first transplant. It's easier on the body and there are usually fewer fluid and dietary restrictions.There is a small chance that PD won't work with him since he was on it before and has had abdominal surgery. The fluid they use lightly scars the peritoneum over time and some surgeries open up the peritoneum, so there is scaring when that heals. If he can't have PD, then we are looking at hemo dialysis.It is possible to do hemo dialysis at home, but I really don't think I could handle that, so we would need to take him to Bozeman 3 or so days a week for a few hours.The risk of infection from either type of dialysis is pretty scary. He will continue to take his anti-rejection medication since his transplant is still working enough to get by for now, but anytime there is an opening into the body, there is a risk of infection.We are really hoping to find a living donor, so far only one person has come forward to be tested. If he has to wait on the list, the transplant center said it would be an 8 - 9 year wait.
Bryan's kidney function is continuing to decline fairly rapidly. He has not started dialysis yet, but it's only a matter of time. His doctor feels it will be within a few months.So far we have one person going through the evaluation to become a living donor, but we have no idea how that will turn out yet.Thank you to all who have donated. We are hoping to get some local fundraisers set up in the new year.
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Hoping you find a donor soon
Marian Kummer
This is my daughter Stephanie's kidney buddy-they've been on the same journey. His mom Shelly Burton Dowdle is amazing-she donated her kidney when he was little that lasted til now. She helped us when Steph was born with kidney disease, then diagnosed with autism like her boys, then again when Steph needed her transplant. https://helphopelive.org/campaign/26391/
Lauren Agoratus
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Bryan Roger Dowdle
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.
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