At 28, she was diagnosed with polycystic kidney disease, which is a hereditary disease where clusters of cysts develop on the kidneys and as time goes by, they continue to multiply, causing severe discomfort and then eventually, they overpower the kidneys causing kidney failure. There is no cure.
Since her diagnosis, she’s lived life being proactive about her health, all in an effort to try and prevent where we are now. She’s been fighting to be an advocate for herself: doing research so she could be as informed as the doctors and be able to ask the right questions. She started searching for a kidney as soon as she found out her kidney function was dropping but we still haven’t been able to find a donor.
She’s gone through 16 tests to even be able to get on the donor list for a kidney and while she’s played the waiting game for a donor, her health has drastically declined.
In November of 2016, a couple of days before her 54th birthday, my mom had surgery to remove her left kidney, and what followed has been multiple trips to the emergency room, surgeries to insert and remove different catheters or ports for dialysis, trying and failing to be able to do at-home dialysis, constantly getting sick from the dialysis she now has to do 3x a week at the clinic to stay alive, and all of this while waiting for a kidney. In Rhode Island where she lives, it’s a 6 year wait. She’s been on the list for about 2.5 years now and I’d hate to think what she’s going to go through for the next 4. We do know that within the next couple of months, it’s very likely that she’ll have to have her other kidney removed. That opens up a whole other can of health changes like only being able to consume 1 liter of liquid (from food or drink) a day which I would imagine, causes severe dehydration.
Our priority is to find a donor with a blood type of O+ so please spread the word and for anyone who can donate, please call Sarah Gibb, RN, Transplant Coordinator at [phone redacted].
Another stress that’s added to the list while fighting for your life is the growing medical bills and inability to work.
My mom has hustled her entire life, working multiple jobs at a time as a single parent to support me and my brother, and then working her “you know what” off to open her own personal training business. She had to close the business she worked so hard to build in September of 2016, after 21 years in business because of her declining health.
The 3 hour treatment she does 3x a week to keep her alive is also making her sick and unable to work. It drains everything from you, causes you to be physically sick, get migraines, and then after each treatment is over, all you can do is come home and sleep. I don't know what's going to happen when her other kidney gets removed. I don't know how it's going to affect how she feels on a daily basis and all I can do is hope there won't be complications until we can find a donor. Until then, she needs our help to pay her medical bills while she tries to get through this the best she can.
Like I mentioned, to those that know her she’s Suzie, the animal loving, motorcycle riding, tough cookie who loves to joke and live life to the fullest. She’s the one you go to say hi to at her business because you see her car parked out front.
Growing up, she taught me not to take no for an answer and if I want something in life, fight for it and make it happen. Now we need to fight for her.
Please, if you’re in Rhode Island and know someone who can donate, please contact the number above. If not, please share this page, donate, and help my mom get her life back.
- Jon Mueller
- Kevin K
- Jerome Roch
- Katherine Gibson
- Kat Dee
Organizer and beneficiary
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