Most of you already know that Jimmy was diagnosed on December 22nd 2013 with a rare kidney disease called Focal segmental glomerulosclerosis (FSGS) FSGS scars the filters in the kidney, called glomeruli. Jimmy's disease is the kind with a collapsing element, which does a lot more and quicker damage. Patients with glomerulosclerosis gradually get worse until they reach kidney failure, when this occurs, they will need a kidney transplant or dialysis (hemodialysis) to stay alive. Jimmy was already at kidney failure when his was diagnosed. He has been on dialysis since early February. Though dialysis keeps the toxins from building up and keeps him alive, it is very hard on the mind and body. Our number one goal is for Jimmy to receive a kidney transplant.
Once on dialysis Jimmy was supposed to start feeling better, but he kept feeling worse. In April he was diagnosed with Neuropathy. Neuropathy, also simply known as nerve pain - is a complication found in a number of different conditions. Some people with kidney disease get it, some don't. Jimmy is in pain most of the time. It makes it difficult to walk or do everyday tasks. Pain medicine helps some. We have an appointment with a neurologist this Saturday and hope to know more about treating Neuropathy then. The only cure is a transplant
Getting on the transplant list is a long process. We go to MUSC (Medical University Of South Carolina) on June 10th for Jimmy to be evaluated. His insurance does not cover a transplant at CMC Charlotte. Once he is approved to receive a transplant he will be put on the national transplant list. This list is to receive a kidney from a deceased donor and has a 2 to 5 year wait. A live donor is our ultimate goal. They are healthier kidneys and tend to last much longer. So we will be getting anyone willing evaluated to be a donor for him. I am not a match but I am willing to give a kidney to someone else if they have someone that can give one to Jimmy.
Jimmy has been out of work since January, he is on short term disability until July. Then he goes on Social Security Medical disability. He should be able to go back to work 6 to 12 months after his transplant. I have been able to continue working, my employers have been great with me having to take so much time off. We were worried we would need to move, but at this time Jimmy and I are doing OK financially. this is in part due to our awesome neighborhood, they have done 2 fundraisers to help with doctor bills. As bad as this disease is, we have never felt so blessed. The out pouring of love and support has been amazing. Old friends from the past and new friends we have just met have stepped up to help. Jimmy and I both have been at a loss at how to say thank you to everyone
Every day some asks me if they can do anything to help. So I am creating this page. Once Jimmy reaches the end of his disability he will have to go on cobra insurance.(We are pretty sure he will lose his job then.) He has really good insurance but it is going to start costing a lot more. The travel involved in getting a transplant is going to get very expensive. Copays, Doctor bills, Hotel costs, food, not to mention the price of gas to and from Charleston. We have created a Transplant Fund. Any donations or "extra" money we have is going into this fund.
Setting this page up is not easy for us. We would much rather be on the other side of a fund raiser, but here we are.
Thank you, and Love,
Diana & Jimmy
Things we need:
#2. A kidney that matches!
#3. Help with the cost
- Jason Leclerc
- Janine Frey
- Rome Rich Lewandowski
- Stephanie Coleman
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