My husband was diagnosed with IgA Nephropathy. For the longest time, even before I knew him, when he was sick with a cold virus he would be extremely feverish, hard to wake and have urine that was dark as coffee. Routine blood tests eventually showed some signs of kidney issues and after having kidney biopsies taken in 2010, it was confirmed that he had this disease.
The plan at that time was to try not to get sick with a cold and take meds to lower cholesterol and blood pressure in order to maintain the 40% kidney function that he had left. My husband has always exercised regularly, eaten healthily, never smoked, drank only on occasion, and has led a healthy life. Since high school he has played weekly games of soccer or hockey on men’s leagues and frequented the gym. A few months ago he started feeling really tired and began taking vitamin supplements to get him through the day. Even after taking these “men’s vitamins” for many weeks his fatigue persisted. We thought it was due to the crazy cold Chicago winter we have had. Then he went in for routine blood work in March.
IgA nephropathy is a degenerative kidney disease that is genetic but not hereditary. It happens because the body naturally makes antibodies called immunoglobulin A (IgA) to attack the cold virus. Normally the body then breaks the antibodies down so they can pass through the kidneys and out of the body as waste. In people with IgA nephropathy the antibodies are unable to be broken down and are either lodged in or pushed through the kidneys causing holes, scarring and inflammation. The kidneys then lose their ability to filter waste from the blood.
The blood work came back with some seriously alarming numbers. Enough that his 6 month kidney check up was moved from the month of May to “Immediately”. All at once were in the nephrologist’s office listening to some life changing news. What we thought would happen 5 years from now was suddenly right there in the room with us. Instead of slowly progressing through the stages of kidney failure as he had all these years, his levels had doubled in seriousness in less than a year’s time. He had gone from stage 3 to stage 5 with less than 10% function from both kidneys. This would explain the swelling, the fatigue and much more.
We go to RUSH medical center this week to meet with a team of doctors. In 6 weeks to 6 months he will be on a transplant wait list and Peritoneal dialysis. He will be on medications and injections to treat the multiple side effects that prey on his blood, immune system and more. He will be on a strict diet. His life will change dramatically.
I am a fixer and a doer, but this is a problem that I can not fix. I do not know how to handle that. So many questions and concerns as we begin a new stage of life. It is so hard to wait for doctors and insurance to take care of their paperwork and go back and forth while we sit at home wondering what will come next. Have you ever dealt with kidney failure in your family?
What happens now?
I haven’t had to deal with anything like that. I’ll be praying for you guys.
Thank you so much Michelle – I appreciate that 🙂
Bobbie Anne Munsey
My heart breaks reading this Jen. Your family is in my prayers.
Thank you Bobbie Anne. I appreciate you so much 🙂
So sorry Jen. My grandma had kidney failure and was on dialysis for 10 years before she passed. My 4 month old has some kidney issues as well. We are hoping his body will correct them all on his own. Until we know for sure, he is on daily meds though. Has been since he was born .
I pray they find a match quickly for your husband.
OH wow…a little tiny guy on meds for kidney issues is sad and I hope he grows out of that too. . . scary stuff when the body doesn’t work right – but thank GOD for medical science and faithful prayers. Thanks Sharon.
I love you Jen and know that with medical interventions and prayers things will go well for Paul – and for you and the kids. Big hugs for you my sweet daughter. Thanks for putting together this format to keep all of us who love you posted. This is what your great Auntie Felecia had – it dawned on me when I read that it is initiated by the body responding to a cold virus. She had it a long time ago and did very well for many years. Medical science has improved so much since then so I am thinking things look good for upcoming treatment and interventions.
Thank you so much for the support! Love you <3 Medical science and dialysis is really effective now for kidneys, we are looking forward to some good news on Thursday so that he can start feeling better 🙂
I am so sorry to hear this. I am praying for you guys and I hope the transplant comes through quickly for your husband.
Paul should talk to Greg’s uncle….he had a transplant 5 years ago is doing great…..he is truly a wonderful man with so many words of wisdom if Paul would be interested….please let us know if you need anything:))
My prayers are with your family. My name is Paula and I work with Lindsey. Faith and prayers will help get through. My father was a Lung transplant patient and the anxiety of waiting is almost unbearable, but keep POSITIVE and cherish everyday you have with your loved ones. ♡
Thank you so much Carlee – that means so much to us 🙂
That is a great idea and a valuable resource for Paul to get a first hand perspective!! Thanks Yolanda.
Hi Paula. You are so sweet to leave a note. Lindsey has kept me updated regularly on your dad and our love goes out to you and your family. I know that it has been so hard on you and that the pain will not pass easily or anytime soon. Your fun personality and big heart will get you through. Thank you for your kindness . . . we all do need to cherish each other while we have the opportunity.
I haven’t dealt with this nor do I know anyone who has, but I will keep you guys in my thoughts and prayers. I can only imagine how scary this must feel.
I am so sorry that you and your family are going through this. I wish for you guys a normal as possible life, fir your hubs to feel as good as possible, and for a speedy transplant and recovery.
Thank you Dawn! I appreciate you so much. Luckily my hubs is a candidate to do dialysis at home at night! This is a tremendous PLUS in the situation because he can work and not get so wiped out from the treatments 🙂
So sorry to hear this and I hope he gets “the call” so much sooner than later! I have Lupus (34 years this month) and 2 years ago this month I suffered acute kidney failure. Mine was nothing like his of course, but scary. You are all in my prayers.
Prayers and hugs and kind thoughts right back at you Robin. I have not known anyone directly affected by Lupus but I hear it is quite a fight. <3 Thank you for your kindness 🙂
Christy Peeples DuBois
My prayers will be with you both. My Dad was on dialysis for five years. It was a life altering change when he went on dialysis. I remember it so well. It isn’t easy but it is doable and the diet gets easier with time. You learn what foods have what and how your body usually responds to each food. I remember consulting a chart for every snack, meal, etc… After some time you just learn it and mostly know it without having to look up each food. Again, my prayers are continuously with you both.
Thank you for taking the time to share your experience and give us insight into what to expect. Thank you for your words of encouragement 🙂 I suppose that we all get used to whatever life gives us, right? And diet is not such a bad thing to have to get used to. Thanks for your prayers Christy!
Jen, I am so sorry this is happening. Our family went through this a long time ago. It sounds weird, but I can’t remember the exact year.
Anyway, my youngest brother who was a hvac repairman contracted kidney disease (supposedly work related).
His condition progressed extremely rapidly. He never had to go on dialysis. Within months, he required a kidney transplant.
I have two other brothers, and one of them donated a kidney. As far as operations go, (and this was decades ago), it was much harder on the donor. My brother that donated was always into fitness and lifting weights. I digress.
The operation went smoothly. My brother is doing fine now, though he will always be on medication to prevent his body from fighting the “foreign” kidney. Sorry for my lack of medical terms. 🙂
Sending lots of positive thoughts your way!
Thank you so much Deborah for taking the time to share your story with me. It is comforting to know that your family had a similar experience and that it was successful!!! I appreciate your kindness and the positive thoughts !
Meeting the Kidney Transplant Team | jenny at dapperhouse
[…] out my husband was in stage 5 kidney/renal failure in May was a shock. He was already diagnosed with IgA Nephropothy so we knew that it was coming. […]
The Perfect Match – Our Kidney Transplant Story | jenny at dapperhouse
[…] scale with 2 being “low kidney function”) kidney disease, due to a genetic condition called IGA Nephropathy (IGA). This condition had affected his body since he was born, but kidney disease is often a slow […]
This is a very interesting story. I am an 18 year old, who has also been affected by chronic kidney disease which was caused by IgA nephropathy. It’s amazing and compelling to know I will get through this disease much like your family has. I was diagnosed on September 11, 2014 did dialysis for six months and was very lucky and fortunate to have an older sibling donate his kidney. I was a very difficult time in my life especially because it came all at once and now I am a college student, although it is very stressful I strive to become a pediatric nephrologist so I can help children and young adults with the kidney disease.
Good Luck to you and your family. May you have many blessings this year.
18 years old is young to be dealing with so many issues of such complexity and demands. I am glad to hear that you found a donor and am doing well now. Thank you for sharing a little of your personal story. I will be thinking of you often 🙂 Thank ou for the luck and the blessings!!! Same to you.
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