Forever Grateful!!!

[gbaby63]

My husband had the flu in January 2018. He was so sick, went to the Dr.'s was given medicine and took a couple days off. He woke one morning with a feeling of a fever (although he didn't have one) he began vomiting profusely. The Dr. also did blood work on him and told him on January 30th 2018 to get to the ER his kidney were shutting down. At this time he was Acute. For the first two weeks the Dr.'s at the hospital (my husband was admitted for 6 weeks) could not figure out what caused his kidney's to shut down. They came to a diagnosis of vasculitis. He has had Rituxan (4 series) treatments, plasma transfusions and is in now a dialysis patient with chronic end stage 5 renal failure. This was a health 6'2 240lb man. So, he is seeing a Rheumatologist who has him on a oral chemo therapy to keep the vasculitis in remission. She refuses to let him go on a transplant list for 2 years, to make sure the vasculitis stays in a remission state. He see's a kidney specialist but is being told his condition is so rare (1 in 1 million we're told get this) that his primary and kidney specialist are agreeing to the Rheumatologist's decision. And the part I don't understand and can not get a straight answer about is why my husband still urinates (small amounts but frequently). We are getting ready to do PD dialysis at home but this entire ordeal has been so surreal. I can't thank the National Kidney Foundation and Davita's Dialysis enough for the help and support they have given and shown us over the last 1 1/2. My heart is so full of appreciation. I truly in my heart and I say this with all my being...We could not have made it without you. We would have lost everything. And even though we struggle with finances daily...we are so blessed for what the National Kidney Foundation has provided. - James and Jenny Reed

[Gardner-NY]

My heart goes out to you both on this recent quick major medical emergency. I pray things turn around soon for your husband. Keep us posted. Prayers are powerful.

[Sparkles614]

Hi gbaby63. I’m so sorry to hear about your husband’s (and your) situation. I’ve had kidney disease for 29 years. During that time I’ve spent 10 years total (2 years and then later 8 years) on dialysis and have had 2 transplants. I’ve had my current kidney 9.5 years. Although your husband still produces some urine, the reason he needs to start dialysis is because his kidneys are no longer filtering (cleaning) enough of the toxins from his body. A person can still produce urine but can still need dialysis. I have never made urine while on dialysis, but there were some patients at my unit who did. I also understand your frustration with needing to wait the extra time before being put on the list for transplant. In my experience, transplant centers/doctors generally follow the consulting doctor’s recommendations. Having a transplant is serious business. Recovery from the surgery and the addition of immunosuppressant meds puts a strain on a person’s body. The doctors want to make sure your husband is in the best condition possible for long term success. One of the most important things for both of you to remember is to be your own advocate. If you don’t understand something, keep asking until you do. This group is full of wonderful people who are willing to share. If you have more questions for me, please ask. I know it can be scary when things happen so suddenly. My thoughts are with you both. 🌸