Help Nick get a Kidney transplant

This is Nick, hes now 21. he is now diagnosed with stage 5 End stage Renal disease .At age 18 he started with high blood pressure which promopted other tests. The inital results showed a problem with his kidneys. He had a kidney biopsey which showed that a part of his immune system was attacking his kidneys. After many many tests for auto immune & other diseases, it turns out he doesnt have an immune disorder. However the Dr's dont know why part of his immune system acted the way it did. The nephrologist in Burlington Vt started Chemptherapy treatments, there were to be 6 treatments, however Nick was only able to recieve 3 before his hemoglobin levels dropped to low and he then had to have a blood transfusion He's had 3 transfusions so far . We have been to a world renowned specialist, Dr Appel, in NYC where they have even done genetic testing. There have been many medications along the way, from high blood pressure medications to immunosuppressants. In june of 2016 we along with his Nephrologist in NY decided to try an experimental drug to try and put his kidney disease into remission, the insurance did not cover this medication, but thankfully the company that made it, provided it free, but due to the steriod like effects he gained 36 pounds of fluid and needed dialysis to help remove it. Prior to this he had a surgery for an AV Fistula but it never matured so he then had to have a catheter put in his chest. He started dialysis at the end of august 2016. In early October he came down with symptoms which brought us to the emergency room. He was diagnosed with a staph infection and a kidney infection that turned septic. He was in the hospital for 9 days.  His second Av Fistula was only 3 weeks old when the chest cath had to be removed and they had no chioce but to start using the fistula for immediate dialysis. He goes to dialysis 3 times a week for 4 hours each time. Dialysis is not easy on him. Instead of his blood pressure going down it climbs to sometimes dangerously high levels. He has headaches & sometimes vomiting after dialysis treatments and is totally exhausted the rest of the day .He also has to have EPO injections to help raise his hemoglobin. We are told he will need a transplant. Although we pray daily for a miracle we have to face reality and be prepared. He was just listed for transplant so we are on to the next phase where donors can now be tested .His sister and brother are going to be tested to see if they can be a donor. In the event they are not a match or are ineligible anyone interested in seeing if they are a match can call..[phone redacted], tell them its for Nick Lavalley and they will send out donor material information to you. Although Nick has medical insurance there is going to be alot of expenses not covered by insurance, travel, hotel stays, food, med co pays, after care . We are hoping his sister or brother is a match as that would probably be the closest .Although being a mother it's very scary to think I will have 2 of my children on the operating table .Afterwards though he will have to be on immunosupressants and other meds for the rest of his life. We arent the type  of people who usually ask for help but my husband is self employed and has no vacation or sick days to be paid for, so if he isnt working he isnt making money. After transplant were told we have to go back to the hospital 3 times a week for a few months for constant testing for infection or rejection. Any help would be greatly appreciated. Although my son has been through so much in such a short time he continues to have a smile even though i know how scared he really is. He is looking forward to a day where he can begin to have a more normal life .  Thank You all so much.


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Melissa Lavalley 
Mooers Forks, NY
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