Heather j & Rubin Clark

Family and friends of Heather Clark are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with a transplant. Heather 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.

My name is Heather. I am 48 years old and have stage 4 kidney disease. I am mom to 5 grown up kiddos. Have 4 grandbabies and 2 grandbabies arriving in June and August. I am working on getting on the transplant list and have recently had the pd catheter surgically installed to prepare for dialysis. 

My kidney disease didn’t just pop up. It was genetically inherited. Some days I really wish my parents would’ve really thought about it before having kids, but here I am standing proud, loud and tall. 

My Dad is a post-transplant guy! 11 years strong. Nothing slows him down. He is almost 70 and can outdo most 30-year-olds I know, when it comes to staying busy. He loves to work on cars and play in the sand dunes. He lives in the desert, travels and enjoys visiting the coast as often as he can. This gives me a glimmer of hope for my own future. 

Having kidney disease has not been kind to me symptomatic wise.  But I keep pushing day to day. I am no longer working due to my symptoms. Hard to just up and stop since I have worked since I was 14 years old. But here we are. In a sense it does make life a little easier since I am also raising 3 of my grandbabies.  One having special medical needs and another having special mental health needs. But we got this!! Most people look at me like I am crazy when they hear my story. Life could be much worse and to be honest these babies keep me going strong. 

Anyways, back in 2012 if I remember correctly. We found out my dad was in kidney failure. I and a whole bunch of other family members got tested to see if we were a match. My sister was a match, but I was not. In the process of getting tested I went to my doctor because I really wasn’t feeling well. Thinking it was nerves and stress, and ya know life just getting to me in an overwhelming way at the time. My doctor ran some tests including a kidney test. It came back that I had kidney disease. Of course I panicked, knowing what my dad was going through. He at that time was getting ready to start dialysis himself.  I didn’t know enough about the disease to not panic. After talking to my dad, my sister flew down to continue her work up for him. Well low and behold she gets diagnosed with it too.

So, the research begins. We find out that not only did my grandfather pass away from kidney disease, so did my great grandfather. At this point I felt like there is no hope. Not knowing that there is this whole world out there for kidney patients. Man, what a weight off my shoulders when I found it. It has become a daily resource for me. Talking to patients, talking to post transplant people. Being able to do research. Being able to ask any question my heart desires. But knowing that this is by far not going to be easy. 

Insurance issues are such a real thing. I have sat and cried for hours because I couldn’t afford good insurance. And asking for help in the state I live in feels like a joke. On that end I still have not been given an answer. Being turned away from transplant centers because of insurance. Being told that I am limited to the state I live in, if I ever get Medicaid. Feeling like I am all alone and wanting to give up. But then I look at this 10-year-old little girl Who is an absolute rockstar…. that I am raising and go okay…. If she can do all of this with her health issue, I had better stop feeling sorry for myself and step up.  I know we all have those days where it’s just a struggle. 

For now, I am taking online classes for more understandings of everything. I am going to every doctor’s appointment. I am asking every question I can think of. I am fighting and praying and figuring life out. But also, am pushing my own kids to get tested for kidney disease. It is a long road and the earlier it can be detected the better the odds. My 24-year-old daughter planned on donating her kidney to me or going through the kidney share program if needed. She just had her first baby this month. When she was 18, she tried to donate to her teacher and ended up not being a match! We decided to get her genetic test done about a month ago. Sadly, she tested positive for PKD too. Talk about heartbreaking all the way around. I don’t wish this on anyone. Especially one of my kids. So now we are 5 generations in with this disease.

I am reaching out for help so we can keep going. So, we can help find some type of relief with this disease. So, I can help support my family and help others along the way.

I am sure that my story will keep winding down this long road, which I am absolutely okay with, I just want to be the one to tell it. 

Thank You for reading!