I have IGA Nephropathy, I’m on dialysis and need a kidney transplant. I’m 34 years old. Ask me anything!

I’m the more common O blood type. Whatever it is. Need a good kidney? Dogs shouldn’t outlive their owners.

For Ernie.

Hi! Thank you so much for responding, I’m totally not ignoring you and I will send you info as soon as I get a moment, probably tonight. I’m quite shocked by the amount of comments and messages I’ve gotten so far! 🤗

How can I find out if I can be a donor?

Hi! I’ll PM you with a form you can fill out and send. Where are you located?

Who is your surgeon at Jefferson? I've had kidney surgery there twice.

My PD nephrologist is Dr. Zhang and the surgeon I spoke with at my transplant eval appointment was Dr. Maley. I saw Dr. McCauley for about 5 years before I went on dialysis.

Can we see a picture of Ernie? Does he help you relax during treatments?

Ernie is the best dog! He does help me relax, but he unfortunately isn’t allowed in my room because it need to be free of dust, hair and dander.

https://i.imgur.com/nUGTsTn.jpg

I'm chronically ill, obese, and on a boatload of drugs for psoriatic arthritis, depression, chronic pain, and other stuff and nonsense, but my kidneys are (so far) healthy. I could probably feel about the same as I do right now if I gave up one of them. They probably wouldn't let someone like me donate even if it was the only option to be found in time?

Edit: it might be very useful if you or someone could clarify the requirements to donate?

Hi! I’m sorry to hear about your chronic health issues. To be able to donate you’d have to be in perfect health. I will update my post to include donation info. Thanks!

Wait, would they not take the kidney of someone with IgA deficiency? Wouldn’t that take better?

Hmmm I’m actually not sure about that. I could find out from the team. I do know they look for healthy people without issues like diabetes, heart disease, cancer, etc.

What were your creatine levels after diagnosis and application of early medication? How did the progression of the disease affect your daily life. What signs did you have to tell you that your kidneys were losing the battle? Asking because I was diagnosed almost 2 years ago. Currently between insurance and suffering from growing anxiety.
Thank you for your insight and I hope you find a kidney. <3

Creatinine wasn’t bad initially maybe 1, by the time my kidneys failed it was at something like 9 I think. The progression was QUICK I was stable for 5 years and then in a matter of 6 months my kidney function dropped. The only way of knowing that was from labs I didn’t feel horrible until they were really failing.

I go to therapy once a month, which helps with coping. I’ve made my peace with my disease and I’ve let go of what I can’t control. I think it’s affected my husband more than me, I think he was in denial for years, but he’s been extremely supportive.

Hi Corina!

My questions might seems a bit impersonal, sorry if they do. I'm a graduate student stundying immunology, so the disease you're dealing with is interesting to me from a science perspective.

Did they genotype you at any point to figure out if a known mutation was causing your case of IgA nephropathy? Do you know if you have a family history of kidney disease or lung or intestinal problems? Do you still have your tonsils? Have you tried any of the dietary changes that might slow progression?

Hope you find a donor and get back to boxing in the near future.

Did didn’t genotype me, I’ve only been seen by nephrologist, but I saw a integrative doc and did a few studies on my gut health and what not and she suggested that I go gluten free... that didn’t really do much for me. I also went vegan for a while... also didn’t do much at all.

My 82 year old uncle is also on dialysis but not issues when he was young.

No other major family history, other than high blood pressure on my dad’s side.

I still have my tonsils.

I do wish there was more info about what causes it, what I can tell you is that whenever I had a cold or any upper respiratory thing I would see blood in my urine... so things would get flared up.

O positive or O negative?

The -/+ doesn’t matter for transplant as long as I can find an O donor!

Does your illness feel like anything in particular? What about the dialysis?

Do you have any advice (from the perspective of a patient) for someone going into nursing/healthcare?

I am currently in nursing school, and I have become more and more curious about how the patient experiences their disease and treatment. I am learning all about the biological underpinnings of disease and about all sorts of interventions we can perform, but I have a hard time finding anything about what diseases are like for the people experiencing them.

It literally felt like nothing for years, if I hadn’t had a sinus infection, gone to the doctor and been told my blood pressure was extremely high, I wonder if I would have found out I had iga.

Once my kidney function was down to like 5-10% I started feel god awful, I have no appetite, I felt like I had concrete as shoes and led instead of blood running through my veins. I was so fatigued, I had the shakes... my hands would not stop shaking. By the time I went into the hospital and they ran blood tests they say I was extremely anemic and had to get a couple of blood transfusions.

After the first dialysis treatment I felt a hell of a lot better. I like actually wanted to eat. Just felt so so much better.

Dialysis only gives back 10% of kidney function and I take a boatload of medications, overall I feel ok except I’m very fatigued all the time.

My favorite nurses in the hospital were the ones that cares about me and got to know me. There were a few who clearly were just doing a job, but there was a few other who were so sweet and that made SUCH a big difference for me while I was going through all that.

My biggest gripe with my disease is that it’s “invisible” so unless people know I’m sick there’s no way of telling, I look 100% normal to people who don’t know me. That can get a bit frustrating.

You are such a brave person ! I wish i had the courage you did to talk about this. Is it ok if i ask about how dialysis is?

Dialysis sucks, I’m not gonna lie. But I do peritoneal dialysis which is done with a cycle machine over night. And it’s just a solution that goes into the peritoneum and drained a few times throughout the night. I preferred it a million times over hemodialysis which is the kind where you have to go to a center and sit there for 4 hours 3 times a week. I did that for 3 months and I HATED it. I feel emotionally and mentally a lot better on PD.

Overall dialysis makes me feel better than when I was going on kidney failure but the main side effect I have is extreme fatigue. But I still work 9-5, which helps staying positive and useful as a person.

Do you have someone who would be willing to donate for you? Why don't you do the donor exchange program? I did it three years ago and they found a matching chain in less than one week.

My husband is in the exchange program but because I’m blood type O the wait is much longer. Since blood type O is the universal donor there isn’t likely many blood type o donors in the exchange

Hi Corina, what is/has made you happy today?

Today specifically? Baking lol

In general, I love to hang out with my dog and husband. Since I’m so tied with my health issues I don’t get to do a lot, so my husband and I try to watch brunch every week and try a new restaurant every time. There’s always new places piping up all over Philly so that fun.

And believe it or not I love working. My teammates are a lot of fun and I like feeling useful even though I’m sick.

What do you do for work? How long have you been in your career?

I’m a UX designer and art director! I work for Comcast and have been designing for about 13 years.

What did you bake today?

I made an angel food cake with whipped cream and raspberry frosting.

Hi, Corina. I hope your AMA results in you getting a new kidney. Unfortunately, I'm not in a position to offer as I'm hoping to avoid the same situation but due to lupus which probably makes me ineligible, or at least inadvisable, anyway. I have a song for you, though. https://www.youtube.com/watch?v=XxuKGTsJ-NA And here's a different version 24 years later with same singer and two drummers, and different lead guitarist, bass guitarist and keyboardist. Two of my favorite bands. I hope you enjoy. https://www.youtube.com/watch?v=vtT-q2Qx7CI Love and light to you and your family (including furry member, Ernie).

Thank you!!

How do you like PD over hemodialysis?

LOVE pd, I was on hemo for 3 months and I absolutely hated it. PD gives me a lot more freedom

Edit: typo

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Initially I had really high blood pressure but not obvious reason for it to be that high. Then I got a kidney biopsy done and that gave the diagnosis of iga Nephropathy.

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God I forget exactly but like 225/180 which is INSANE.

Also keep in mind at the time I was 27, so it was just weird to have that high of blood pressure

I have high blood pressure as well. Have been seeing a kidney doctor for the last 3 months. Just had a biopsy last week. I had no idea this disease existed, but now I have a feeling I check all the marks. My renal count is 44 and they said I had protein in my urine. Do you have any pain?

No I never had any pain

Sorry one more question, If you get a transplant will you effectively be cured?

No, transplant is a treatment not a cure, unfortunately there is no cure for kidney failure.

What kind of dialysis are you on? My wife has done both. Peritoneal is much better in our opinion. She has had 4 kidney transplants. It's a tough road. I wish you the best.

Wow four! I’m on Pd but also did hemo for 3 months

I don’t have a question but maybe I have IGA Nephropathy? When I was 16 I started pissing blood for no apparent reason. Ice tea looking stuff. Both kidneys inflamed. Docs couldn’t figure out why. After a year of tests the bleeding stopped, my kidneys returned to normal. There were no more symptoms to observe and doctors have me a “best guess diagnosis” of IGA Nephropathy.

That was 17 years ago. It always felt like a half assed diagnosis but it’s scary seeing articles and AMA’s like your own. Thankyou

Yea the only way to diagnose it is through a biopsy, if you are concerned that you have it I’d recommend seeing a specialist

I'm 11 years post kidney transplant, so obviously can't donate but rooting for you to find a kidney! I was on home hemodialysis for two years before my transplant. PD didn't work for me, I was not getting adequate clearance of toxins and had to switch to hemo.

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I'm supposed to ask you question too so here you go! What are you looking most forward to after your transplant? And what makes you most anxious/worried about your transplant? Maybe I can tell you my experiences and help. And if you have any questions about the kidney transplant experience, let me know!

Looking forward FOOD!

Anxious about the immunosuppressants or that the kidney will fail or that I’ll get IGA again

Hey, I'm your age and had a transplant two years ago. Are you on PD or Hemo?

It's not easy sharing your story and how difficult it can be to describe your symptoms and their effects on your life, so good job on being open. That takes strength and demonstrates that you have the attitude you need to come out of this strong and rejuvenated!

I’m on PD. How are you doing post transplant?

What's your favorite board game?

Oh good question. Gosh I don’t know if these count but I love pictionary, scattegories, and I used to love puzzles and memory as a kid.

We used to have game night and my fav game was something called fish bowl.

Fuck thats rough... I'm guessing they tried everything else including:

Mycophenolate mofetil aka CellCept

Or

APL-2

Or any trial studies?

I'm O-pos and I'd offer a kidney, but growing up I had a history of drug abuse, so I assume that renders me ineligible.

I wish you the absolute best of luck.

There is not good treatment for iga neph, the offered me prednisone but no nephrologist could tell me for sure if that would actually help. I tried fish oil, alternative medicine, went vegan, went gluten free. Nothing helped. They don’t know much about the disease or what causes it so that is frustrating.

I’m not entirely sure past drug abuse automatically disqualifies you, I’ve gotten 2 calls for potential deceased kidneys both of which were overdoses. I’m sure if you’ve dealt with the drug use and have recovered successfully they’ll still consider. The evaluation process is pretty thorough.

Hello Corina;

Thanks for taking the time and making the effort to communicate with us. What does dialysis "feel" like? Thanks and may God bless you and Bob! Ernie too!

It doesn’t feel like much, Peritoneal dialysis is done through a catheter in the peritoneum (the membrane that holds abdominal organs) and I get filled up with about 1.5 of a dialysis solution and then it just sits (dwells) for 1.5 hours then the machine drains it and fills me up again. My current prescription is of 4 cycle which equals 9 hours. The only thing u feel is the very first drain when I hook up and the very last drain. It feels like memorial cramps. Not the best feeling to be woken up to for sure. Beyond that I don’t feel anything else. I’ve gotten used to have a catheter sticking out of my belly and I just keep it in a belt around my waste so it’s not just dangling or taped up.

How are you managing the medical bills? What kind of work do you do? What made you change from HD to PD?

Medical bills are a bitch, I was a contractor last year and my insurance was decent but not great, I paid so much money out of pocket. Thankfully I have savings. I am now a salaried employee with benefits so I’m in a better spot, but generally speaking dealing with insurance claims and the hospital is such a pain, basically a second job having to call and figure things out with them.

I do ux work and I’m an art director

HD was just not for me, I felt trapped quite literally. PD gave me a ton more freedom to be a somewhat normal 34 year old

Hi Corina... Curious, how long do they expect you can live on dialysis for? Sorry if that's a morbid question. Do they tell you where you are on the transplant list? How long is the list currently?

As an aside, situations like this is why I'm listed as an organ donor, both on my license and my family knows my wishes. I wish you the best!

Hi! That’s a morbid question but definitely something to think about in my situation. I’m not sure what the average mortality rate for dialysis is but the longer you’re on it the less chances of survival, specially when there are risks of infection. Neither transplant or dialysis are cures they are both treatments, but transplant is the better option for me given my age and other wise healthy body. Every single doctor I’ve seen has told me transplant is the better option. A decease donor kidney has an average life of 8-12 years while a living donor kidne lo as n average of 15-20, obviously my doctor hope I can find a living donor since that would be better considering my age.

Are you doing peritoneal dialysis?

Yep! I have a catheter in my belly for PD

What causes you to be so easily exhausted? I've been doing hemodialysis for almost 3 years now and I'm 28 years old. I go to the gym three times a week after dialysis, work 25 hours a week as a waiter in a busy restaurant, and walk or bike everywhere. Some days I'll nap, but overall I just feel like I have to try harder than most people. I know what you mean that you don't let it define you, but I find it harder to let it keep me down. I see so many people in the clinic with me that have deteriorated and barely move, and I can't let myself get to that point. What is your treatment like? Are you receiving anything for your anemia? How difficult was it adjusting to the diet?

I also try to stay active, I walk everywhere but I just don’t have the energy to work out like I used to.

For me Hemo was mentally draining, and depressing I really hated it. With PD I have a lot more freedom. And I still work 9-5 which honestly helps me feel normal and like a useful person rather than a disabled one.

The diet got some getting used to but I love to cook so I get creative. And I get iron pills and I give my self a shit of EPO every other week to maintain hemoglobin levels normal.

My treatment is every single night. I hook up to my machine and go to sleep. I have to be on the machine for 9 hours so I need to make sure to get hooked up before 11pm so I can get to work on time. And it basically just does it thing over night. I sleep completely fine.

Hi Corinna! Best of luck finding a donor! I work closely with post transplant patients (transplant pharmacist) so I get to see how awesome it is for people when they finally get off of dialysis!

My question for you is, what's your favorite Venezuelan dish to make at home?

Thank you!

Arepas for sure! They are corn patties and you can stuff them with anything you’d like, beef, chicken, cheese, beans, plantains, anything!

Do you have hyperkalemia (high potassium)?

Nope my potassium is always normal

Do you have seasonal allergies?

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What was going on in your personal life in the period of time between when you got sick and were diagnosed with IgA - nephropathy?

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I do have seasonal allergies. Mostly in the spring. Around the time I got sick we were doing construction on our kitchen, I got a horrible sinus infection and that’s how I found out something was wrong. I went to the doctor for the sinus infection and she took my blood pressure like 10 times before telling me I needed to go to the ER because my blood pressure was off the chart high.

Hope I’m not late this AmA but my mom has been on dialysis for the last two and a half years and for the last year and a half she’s been doing PD which is much preferred to Hemo. She’s been through a lot over time and so I’m curious. Do you ever have issues with fluid overload (do you even have to limit your fluid intake?). More generally, I guess, can you still produce urine? Lastly do you ever have issues with your hemoglobin?

If you do have any issues I mentioned how do you handle them?

Regardless, good luck on your journey and I hope you get the kidney you need!

I don’t retain any fluid thankfully and I do still produce urine, somewhat normal amounts. But my hemoglobin goes up and down a lot, we’ve been trying to figure out the right dudar of EPO and how often. Right now I give myself a shot of epo every other week, 10,000mg

what's your favorite tv show?

Tough question, I just finished watching Sharp Objects on hbo and currently watching the sinner. Any crime murder mistery I love. But I also love comedy like master of none, tim and Eric and insecure.

Why don't more people donate kidneys freely if they dont need both if it saves a life? How do you get on a donor's list? I am healthy but not your blood type.

You can find out if there is a transplant center in your town and contact them to find out more. I’ve heard of altruistic donors starting a long chain of donations and saving a ton of lives

How realistic would it be for someone from reddit to give you a kidney?

I guess that depends. Mostly on location. Out of state donors would need to come to philly for some tests and potentially for surgery (blood test is done wherever the person is). International donors is probably very unrealistic.

Did you take up boxing because of Rocky?

Lolol I’ve actually never seen rocky (I know I know). But I was just looking for something that wasn’t boring and I took an intro class at an mma gym and fell in love. I did boxing, miau Thai and a 6 month stint with jiu jitsu, which I Looooooved but it was brutal on my body.

What's for dinner?

Tonight nothing exciting, but for lunch I prepped some pork shoulder and corn bread

You got money? I got kidneys.

PS I'm serious. It's my actually kidney though.

Unfortunately paying for organs is highly illegal in the US

What is your glomerular filtration rate?

What is your creatinine?

On netflix there is a show called "The Traffickers". What are your thoughts on Episode 3?

Basically you can go abroad, pseudo fake some "donation" paper work and get a kidney from Bangladesh for $3000.

Gfr is somewhere around 5 and creatinine I think was 7 last time I saw my doc.

I haven’t seen that show but I don’t feel comfortable with organ trafficking. There’s a lot of ethical issues there, not to mention human trafficking.

If selling a kidney was legal and there was a proper vetting process in place I would maybe consider paying for one, unfortunately that is illegal at least in the US.

Do you think you deserve free healthcare even though you have not earned it? Healthcare is a privilege not a right.

I’m not even sure how to answer this question. It’s definitely extremely off putting.

First of all everyone deserves healthcare, regardless of income, race or anything else. Wtf is wrong with you.

Secondly, how do you know I haven’t earned anything in my life. I’ve worked my ass off to be where I am. I’ve been fully employed for over 12 years and have earned literally everything I have, no one’s ever handed me anything for free.

Third, I’m not asking for a handout. If people want to donate, great if they don’t then I’m cool with that also.

Lastly, I’m making a wild assumption here that you think I’m maybe an illegal immigrant since I mentioned I’m from Venezuela? I’ve been here as a legal immigrant for almost 2 decades so what’s makes you think I don’t deserve healthcare?