I have been on this journey for many years and have shared most of my experience. I want to share the latest snafu, because it is so infuriating. I went through the transplant evaluation in 2021. Completed all the tests and was told this: My BMI was too high and that on the nuclear test, they found 6% ischemia, which is inflammation on the heart. SIX PERCENT..... I was told that I would have to have a BMI less than 40. Ok, I was not near that. Even though I had in the previous years lost 50 pounds, I was still not that low. I went for bariatric surgery and was denied. I went on Ozempic and had two pancreatitis attacks and had to go to the lowest dose. I was not budging my weight. I was holding on to the weight loss though. I kept getting letters from the transplant group that said things like, desired BMI less than 40, or "encourage BMI less than 40. I even got a letter in February 2023 that said less than 40. Last week, I got a letter that said...... I get so angry just writing this.... BMI not on dialysis, 45. On dialysis, BMI less than 40. I have been below 45 for that last 3 or 4 years.
I immediately called the transplant nurse and said, "what the heck?" She was very contrite. She gave no explanation. She diffused the conversation by asked about the ischemia. My cardiologist was not concerned but would test me after dialysis since the contrast dye would kill my remaining kidney function. I just saw the cardiologist last week and he decided to run an echo to see how my function was currently. They do not want to do another nuclear because, well its nuclear. Again, he is not concerned with the 6% ischemia. I let it go because I thought, "well heck they aren't going to let me transplant anyways because of my weight......"
Now here is the really stinky part. In May, I was put on a BP med that caused HUGE edema for me. My legs blew up and I was gaining weight. My Neph put me on them, and when I went to the cardiologist and complained, he took me off. But I still have residual weight as it takes time to get rid of the water. NOW>>>>> NOW, my BMI is just over 45 by 2 pounds.
Here's what the Transplant Nurse said, " if my weight is below BMI of 45 and if the Echo comes back clean and the Cardiologist says there is little risk, I will be put to active on the Transplant list. NOW????? Why not three years ago when my GFR was higher, lower weight and feeling stronger.
To say the least I am furious. I do not know if the Medical Center changed their BMI restriction or what actually happened. But if I did not look at the most recent letter and call the Nurse, I would have been left thinking that transplant would never be possible. Folks, advocate for yourselves. Read you notes from the doctors. Ask for copies of visit notes if you don't have a patient portal. You the patient, have to be on top of things because of situations like this. The Nurse should have called me about this, but of course did not. They could have seen my weight for the last years in MY Chart. I could have advocated for my cardiologist to petition the transplant board to approve me three years ago. So angry.
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Bassetmommer
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Bassetmommer, WOW! This is ridiculous! I am so sorry that happened to you! It is infuriating, especially since this is your life we are talking about. I really think they should be giving you the three years wait time retroactively. I know there was a number in one of my transplant, handouts that I could call if I felt things weren’t being handled well at my center -it might’ve been through unos. Perhaps you could go that route.
But honestly reading your post brought back so much PTSD in regards to the hoops they made me jump through at my Transplant Center who had me on hold for a 3 mm nodule in my lungs that was misread by their radiologist as new when in fact, it had been there since 2014, which was verified by a pulmonologist who reviewed my scans and compared them to a prior one. It was my idea to see the pulmonologist for a second opinion. And it still took them a month after that to activate me. And you think I got an apology or acknowledgment that they screwed up? Absolutely not! So I feel your frustration. You are right-advocate for yourself! Don’t take no for an answer. If every door is closed at one, Transplant Center, sign up at another, Transplant Center. Praying you get this resolved in a way that is in your favor.
I’m sorry you are going through this. I have a great team and still have to pay close attention and speak up routinely. Hopefully you will be on the list soon!!! Please keep us posted.
i was recently informed by my nephro that since i have heart failure i and epilepsy i cannot be put on the transplant list.my egfr dropped ten points in less than a month and im scheduled for new labs in two weeks.id never make the bmi requirement.
I did read something else they might not be admitting to you. The NKF publicly stated that they will give Blacks priority for transplants. Could be that you are Caucasian has something to do with it?
I doubt it..... I think they changed their BMI restriction and are hesitant to say so. Just got a call again from the Transplant nurse, and on Monday, the transplant team is reviewing my chart. Say a prayer, cross your fingers, light a candle, what ever is neccessary.
Bassetmommer, I am praying that the transplant team approves you. Your posts are always full of good ideas and hopeful thoughts. I start my day reading the postings from this site and benefit from the support that you generate. You are a very compassionate, bright woman and have been fighting for this for a long time. I trust the transplant team will find a way to get you on the list! Hugs and Prayers! Keep going forward with courage! You will prevail!
They are not giving blacks priority; they are giving blacks parity. Blacks, in the past, were ALL were assumed to be big-boned, heavy folks, and that factor was inserted into labs reports; consequently denying many transplants on that basis. (Imagine all white folks being given a "cancer risk" label simply because Caucasians have a preponderance of skin cancer over other races and being told that a transplant is a no-go for you because immunosuppressants encourage cancers.) The NKF actively supported the move to individualize labs, drop racial labelling, on the black population. As a white women, I completely agree with it and NKF's position on it. It's professional and ethical.
Hmm...thankfully I haven't seen that particular article. But it's possible that centers rushed to remedy that situation. So that those that weren't placed on a transplant list because of skewed labs were quickly placed on the transplant list based on the newer, more fair, criteria and given credit for all the time lost, hence pushing others with fewer years further down on it. Generally speaking, time on the waitlist is backdated to when one starts on dialysis. Some may have been on dialysis for many years - far exceeding others on the transplant list - and should have been transplanted years ago. Anyway, this is just my thoughts. The criteria for a pre-emptive kidney transplant generally starts with an eGFR of 20 or less.
Maybe it seems that way but since the change in egfr based on race more black folks are qualifying for transplants based on being placed in the stage 5 category? not yet at that stage so im not really up on how they are making these decisions and as you folks know transplant centers often have different priorities. However, i do know that its really important to follow all information documented in your online medical record such as my chart or my health. More than once i have read jumbled inaccurate reports after labs or appointments. at one point my nephrologist documented an appointment and the summary made absolutely no sense. My pcp and i got a laugh when i had her read it but its a serious issue. A lot of specialists use a dictation system and the secretaries who type them up often make mistakes, serious ones. Keep an eye on everything in your medical record. Who knows what kinds of reports they were including before the advent of the on line medical record systems. just be aware and be proactive. Those records will follow you from doctor to doctor and the last thing you want to contend with is erroneus information following you around if you change doctors.
Nope - race doesn't play any part in process. Only hard medical info matters like your dental health, heart health, and so on. It's on the patient to forward all required data to the transplant center for evaluation by their "transplant panel". The panel I'm familiar with doesn't meet often, and membership can change as people come and go. If a patient doesn't get on a transplant list in a timely fashion, I assume the center simply labels your file as inactive or closed since everything "times out" like the required colonoscopy, etc. I'd like to add that everyone assumes that medical records are available to all hospitals - but often the records systems don't transfer over - permissions must be set up, etc. So the burden to provide documentation rests with the patient. It often means faxing over the data. My hubby and I were constantly making those requests. For a transplant panel, everything is presented in a neat, tidy file with all items submitted and fully up-to-date.
Here in my state, you are allowed only one listing. Are you listing in a centralized location or all over the place? If I went to the next closer center, I would lose all the time and other criteria I have built up here.
It isn't against the law to deny appointments or treatment. Gratefully I'm on the list at HCMC in Minneapolis. Mayo and the university of Minnesota won't take fat folks. Also mayo doesn't like to take people who need a stranger donation. They prefer live donations because the outcome stats are better. They live and we die for their stats.
Yes... I think all transplant centers strongly recommend patients to pursue a living donor. They want everyone to have short wait times ad they also want the best outcomes all you and themselves - donor transplants do have less risk. Yet all of them will do both - living and deceased kidney transplantation. Year-to-date, Mayo Rochester has on the books 150 deceased donor transplants and 146 living donor transplants. Sadly, being overweight is one factor that many centers do look at carefully since it does impact graft survival. Interestingly, I don't think either of our centers looked at my hubby's BMI much - but they definitely kept an eye on his scale weight, mobility, etc. (One doctor literally watched him walking down a hallway.) I do believe BMI does need to be replaced with better measures.
That would be interesting if they look at the mobility of the person. I have always been a "fatalete" ... or someone of size who is athletic. There are thousands of us. Marathon runners, weight lifters. I played tennis, tournament level sometimes five times a week. Right up to the week of my operation I was doing water aerobics class in a current channel, against the current. Very hard. And I still get 2 miles in daily.
Yes...a doctor observed my hubby's mobility. Now, I don't know what exactly he did afterwards about that, whether it was jotted down somewhere, etc. I do know some in my other groups have also mentioned similar remarks re weight and mobility. (Lack of mobility was actually the reason some were rejected.)The same doctor also noted that, because of my hubby's slight build and weight, he might qualify for an infant-sized kidney. So he was definitely sizing him up. During that consult, the doctor rifled through his records and also read a letter from my hubby's nephrologist stating he was a very compliant patient. The doctor noted that meant a lot - he would prefer a kidney go to an older man who would treat the transplant with care rather than a young man interested only in drinking and partying. He then said he would put my hubby forward for evaluation by the full transplant panel which would vote on whether my hubby could be on the transplant list. I don't know how a transplant panel evaluates everything and comes to a decision - there may be differences there among the centers. Maybe it's an open discussion, maybe it's a point system...who knows. I think there were around 5 people on our center's panel. Personally speaking, I think your high level of physical activity should definitely work in your favor. The whole process truly seemed to be a lot like a high-stakes job interview.
What State are you in? NFK and UNOS do not limit the number of Transplant Centers you can apply to and qualify for their list. Your time counts from the day you were placed on dialysis. I just qualifiped for my 2nd list and I have nearly 3 years qulifying time on both lists.
So sorry you had to go through this. I totally agree you have to advocate for yourself. I'll keep my fingers crossed you get on the list and get a kidney soon.
Mayo clinic in Minnesota does transplants on people with BMI's over 40 because of people in the U.S. being more obese nowadays. No idea how pricey that would be for you though. You are aware of the stats, I assume, about success rates being better with lower BMI, and that the anti-rejection drugs are appetite stimulants and average weight gain after transplant is 25 pounds or so.
I spent most of my life with BMI over 40. For the last couple of years, BMI is about 21. Giving up all forms of sugar was key for me. I have noticed how much difference water weight makes.
You've done wonderfully well stalling your disease progression, and all on this forum appreciate your fighting spirit and honesty and responsiveness to our questions. Very best to you.
Never looked at their site. Just know my nephrologist said they wouldn't accept me. Luckily my eGFR has bounced up from a low of 7 to the 20s. I think my last test was 22 or 23. So, I'm on the transplant list at HCMC. 3 years down, 3+ more to go. Hopefully I can avoid dialysis. I have a fistula, but it hasn't been needed yet. I've shocked them all. But then again my CKD is from 30 years of dehydration due to a high output ileostomy. An uncommon cause that hasn't been studied. They are all guessing really.
I found the page you must have seen. Mayo has a Kidney Transplant Metabolic Program where they take people at 40 and work with them to get them below 35. "The Kidney Transplant Metabolic Program identifies people with high BMIs early and consults with them about their comorbidities, risks and treatment options. The program offers bariatric surgery and other supports, such as dietary resources and mental health care, before transplant to address a high BMI and treat accompanying conditions. In some cases, these treatments stabilize kidney function, which can delay the need for a transplant for years, even permanently." So they take your $ and try to get your weight down. Mayo leads the world in "live donation" so they probably will do those things if you have the $ and a live donor. My insurance would not authorize payment to Mayo for obesity treatment. I feel so sorry for people who live in Rochester. The medical costs there are outrageous. I work for the state and state employees living down there have so few choices because Mayo is the only game in town and is so overpriced. I could get a transplant referral down there, but not weight loss. I don't even qualify for a weight loss referral within my network clinic system, even though they have a program, since I already have an endo and am not a candidate for bariatric surgery.
Sorry again for bringing up a sore subject. The U.S. medical system is very screwed up and money-sucking, isn't it, unless you're quite rich. Sounds like the U.K. system has different problems, like hospital overcrowding and doctors fleeing to Australia, New Zealand and Canada, but not the U.S., where apparently even doctors (and nurses?) are feeling the pinch, or getting re-licensed here is too hard. Maybe non-emergency specialties like nephrology are not as pressured? I know AFib patients in the U.K., the other Health Unlocked forum I see, complain a lot about delays.
Yep. "The greatest health care system in the world" is the most expensive, and only meets the needs of the very rich. While people complain about delays in the UK and Canada, I'm not convinced it is any better in the US. My dental clinic closed and I now have to drive 30 miles to the next closest one and I had to wait 6 months for an appointment. It is over a year wait to get a child tested for ADHD and Autism. It is over a year wait for children's mental health and several months for adult mental health. Then there is rural health care. Women in rural Minnesota can no longer give birth near their homes. There are no OBs and no hospitals with maternity departments. They've all closed because there isn't enough volume to make money. The malpractice insurance is too expensive for OBs and hospital accreditation rules require an OB on duty at all times. Since they can't hire the OBs to sit around in case they just closed the maternity services all together. Rural woman have to move to a city for the final month of pregnancy if they want a hospital birth. I'm having some PT for my back, 2 x a week. Some weeks my appointments are two days in a row. The PTs say, " don't do that, they should be at least 1 day, best if 2 days apart. HA! If I waited until that was possible I wouldn't even get an appointment. My Neph is so booked up I can't even make an appointment. I have to keep trying to try and catch the moment they open up more slots for a future month. It's a myth we don't wait in the US for services. You don't want to get me going on the uninsured. I was uninsured in graduate school and stood hemorrhaging and crying because the clinic wouldn't let me have a gastro appointment without $300 down since I had no insurance.
I am so sorry to hear about your experience. You post such great information, and you have been a real guide for me through this CKD experience. I hope this gets resolved satisfactorily for you. You deserve it.
So sorry to hear of your struggles both with the medical system and your weight. I do hope and pray you’ll not only be put on the Transplant list but they will also find a match for you.
I agree, advocating for oneself is vital. Had I not done that I would have not known I had CKD.
Praying with my fingers crossed. St. Jude, the patron Saint of desperate cases, has been alerted. The whole story is so painful to hear and must be traumatic to be experiencing it. I wish you some peace soon and some success.
My story is similar. My BMI hovers around 40. It's 37 now, but I'm still about the magic 200 pounds my center mandated. It took me over a year to get on the list. Now I'm afraid every day they will take me off it. There are NO STUDIES that indicate people of our size are "high risk." NONE. Everyone over a BMI of 40 is grouped as morbidly obese. So we are in the same category as people who weigh 700 pounds and can't leave their beds. I lost enough on Wegovy to get below 200 after a year. The Wegovy stopped working so I switched to Mounjaro this month. Because these drugs are so strong and have such awful side effects, as you know, it takes 6 months to get to full strength. I'm at the lowest dose of Mounjaro and am hungry all the time. I'm eating two meals some days. Meanwhile the Endo says I won't lose unless I get below 800 calories - starvation. Being a postmenopausal, insulin dependent diabetic with genetic obesity I do no lose on a 1200 calorie diet, I gain. These BMI guidelines are BS. The BMI chart that groups 200 lb people with 10000 people is not based in science, just prejudice. Keep fighting. We have the right to live too.
Yes you are so correct on everything. It is the exactly the same as when there were two GFR ratios because all "black" people have the same body composition.... ridiculous. Here is the issue, statistically, people of size do have some enhanced risk... such as heart and diabetes. comorbidities. They lump as all as fat and lazy and do not take care of ourselves. And if you look at the replies, there are people on this forum that would agree with that.
It all boils down to numbers. Many hospital centers will not take "not perfect" candidates for surgery because they do not want their numbers to get messed up and lowered. CMS, the Center for Medicare, reports off hospitals numbers and they also base their funding accordingly. Lose patients, meaning death or complications and the numbers go down, less $$ in reimbursements. I know this for fact.
Also, BMI was established by insurance companies. They use the formula for discriminating. Higher BMI, more costly insurance premiums. At one point, my medical center was going to charge people of size a higher premium for their coverage...... OHHHHHH Did I scream about that as did others. Did not matter if you were older, younger or had any health issues. If you were FAT, it was going to cost you more for health coverage. It did not happen.
You said going down to 800 calories.... DON"T. I did that for about two or three months and got so weak and cranky. I was miserable and doing myself harm. The only thing it accomplished was that I messed my metabolism up more than it already was. I was eating @1200 for YEARS. I got to the point where nothing was moving the scale. Exercise did not help either but made me feel better.
My cardiologist said that unless I have surgery, I will probably never lose weight of any quantity. I was denied the surgery.... I also tried going to the nutrition center attached to the bariatric surgery. I printed out my diet journal from MYFITNESSPAL. The nurse told me I would gain weight on their diet, which was all prepackaged and loaded with salt foods. She said no way.
The only recourse we have is to self-advocate and scream loudly so people hear us. Just like they changed the GFR ratio, maybe if enough people yell and scream discrimination, we can come a day be treated like human beings and not just statistics. Use your patient forums like this to educate people about this issue.
Oh Bassetmommer I am so sorry to hear this. You of all people who have done everything in your power to do all the right things plus to bless us all with your encouragemet and wisdom. I will pray every day for you to get on the list and that all goes well for you from here on out.
If I was not pro-active and working as my own advocate I would be dead. This is especially true since the pandemic, which has stressed health care on both sides of the ocean. And there doesn't seem to be and end to it. Back in 2001 I spent 17 months caring for my mother. She died of colon cancer. In 2004 I started having a period every ten days. My primary blew it off as stress from caring for mom. I was pro-active and went to a women's health clinic. An office biopsy diagnosed uterine cancer more than half way through the uterine wall.
I was misdiagnosed for at least 15 years with Polymyalgia Rheumatica, (PMR) repeatedly being told I needed to see a psychiatrist. The PMR then morphed into Giant Cell Arteritis, and I am still doing battle. If I had been properly diagnosed in the beginning I might have had a more positive outcome. African Americans are not the only victim of a white male medical establishment. One doctor actually put 4F on one of my files; fat, female, fecund, over forty. Fortunately, that practice is dying out. I am 5,9 and weigh 165#. At the time the doctor made that notation I weighed about 155. But, honestly, what difference should that make on whether a person needs to be treated.
I was put on Carvedilol for resistant hypertension back in November. In January I was in emergency room with suicidal thoughts and so much edema in my legs I could not bend my knees. I figured out my kidneys were causing a lot of my BP issues. I could not get any doctor to really pay attention. My primary put me on BuSpar for anxiety. I became very ill, and in one month my GFR dropped from 42 to 39. I looked it up myself, (pro-active) and learned BuSpar is a no-no for those with kidney disease .
Finally, I asked my oncologist (I have MGUS) to please do a simple urinalysis with my monthly blood work. I had to ask!!!! What is wrong with medical care when a person with GFR of 39 has to ask for a simple urinalysis. Of course it showed high levels of blood and protein in urine. Creatinine was 1.5. I have a lot of symptoms I believe are from my kidneys, but no one seems to be doing anything. Chills, trouble controlling body temp, flushing, nausea, headaches, leg cramps, an achy feeling on left side, middle back. (I think left kidney is the worst one) I do know that with the auto-immune diseases and my age I would be a very poor prospect for a kidney surgery. So, am a little scared.
So, yes, I totally agree with you and you have my sympathy. We must advocate for our self to survive because the system is broken.
OMG this mad me mad. 4F....that is rediculous. Keep fighting your fight, and thanks for the support, My medical center has said the auto-immune disease was not a factor at all for me. Matter of fact, one young jerk MD said it would stop the disease...... just a stupid thing to say.
I know nothing about this and have not researched but when searching BMI and transplant, I found that robotic assisted surgery may be used for individuals with higher BMIs. Might be worth looking into. Of course, you’d have to be at a center that offers it. I did see that someone posted on this site that they recently had robotic assisted surgery.
Ah to this.... it is called the Davinci arm, and it is robotic. Back three years ago, I was told they have one, but only one surgeon trained on it. So the wait would be 6 to 7 years.... but because they wanted to cath me and use contrast dye, they put me inactive, with accruing time. It maybe the change in their BMI is now they have more surgeons willing to do the surgery. Funny thing is they did gallbladder surgery many years ago without all this crap. I survived. They did an extensive 3 hour surgery on my arm connect and artery and vein, I bouced back within days..... its all bovine manure.
Sorry to keep intruding here, I do know how annoying it can be to hear weight loss stories when you wish you could shift the weight ( as the British say) and have decided to relax and do what you're able to do and not worry about it.
So here's my weight loss story, which you're free to ignore.
It took a couple of years, but I think I got below 30 BMI in a year. I was heavy most of my life, first I cut out all kinds of sweeteners, which can be addictive. I got a good scale and just kept weighing every day and cut out the foods that consistently (so I knew it wasn't water weight) made it bump up, which turned out to be most carbs and processed foods, of course, pretty much everything except veggies and a few legumes and fruits and a few nuts. Don't know why nuts are okay, they're high calorie. I took Albutrix while I was losing weight, quit because of the expense, and worry some about protein. I even take prednisone, an appetite stimulant. I'm 71, so its not young metabolism, in fact my basal body temperature is quite low, but I feel like a new person since being heavy brings its own problems, and its fun to wear normal-sized clothes. I don't eat that much, and make myself wait for a few hours between meals, not sure of the calorie count, and love what I do eat, especially blueberries. My skin wrinkled up which happens losing weight when you're old. And the blueberries stain my teeth.
My daughter is quite seriously heavy, but I hold my tongue around her. She's got 3 little kids and a boyfriend in jail for no good reason, and stays here a lot, brings all the foods I gave up, which don't tempt me. She'd like to get bariatric surgery, but its hard to find time to take care of yourself with 3 little kids. Anyway, I love her a lot, don't know why I mentioned this, maybe because I figure nobody's reading this post by now.
I get that. The link above is to the most rigorously objective science site I know of. Its called "Chronic Kidney Disease: Its relationship with Obesity". Its about the effects of the various metabolic disorders associated with heavier weight on CKD, and why there are so few overweight transplant recipients. Its why I decided to try to lose.-I have weird lupusy-anemic blood chemistry and I'm old and wouldn't want to waste a donated kidney. But I admire you for advocating for yourself with such spirit and humor and encouraging others to do the same. I'm sure you'd do well with a transplant.
So very sorry that is happening to you, I cannot imagine how frustrating that has to be. I sure hope things will get better and you can be on that active transplant list and get your transplant. Prayers.
UPdate: Blood work this month shows GFR dropped from 39 to 36, in one month. Still waiting to hear from nephrologist for an appt.
My wife and I became very involved in our medical issues from the start and have always advocated for ourselves. Doctors have to walk a fine line these days because patients have access to a lot of information. I've had nurses call me Dr Google and I just laugh. When you read articles from Cleveland Clinic, Mayo, or Johns Hopkins, those are some pretty reputable sources. We have both been through some major hurdles.
Don't know what all processes you have tried for losing weight but my wife had great success last year in losing 50 pounds from 250 down to 200. She needs a hip replacement and they want the BMI to be 40 or under. She did the intermittent fasting ordeal where she would not eat for 20 hours of each day and would do all of her eating during that 4 hour stretch. And when she did eat, it was strictly low carb, 20 grams or under. It's tough but it worked for her. She would get on the scale each morning and see a pound or two drop.
I feel your frustration with the transplant team. When I was stage 5 and doing hemo, the social worker at Fresenius sent my application to the hospital. I got a letter back saying I was not eligible because of a mediastinal mass that was found several months earlier on an X-ray. I had a biopsy done at two different hospitals and the pathology said it was a spindle cell lesion and not malignant but the transplant team wanted it surgically removed. I did not want to go through that because I was told they would have to break some ribs and deflate a lung to get to it. I know I've told you my CKD was caused by an autoimmune disease called Wegener's GPA, a form of Vasculitis. I watched a video on YouTube from a top doctor at Cleveland Clinic on GPA. In the video, it showed that you could have these lesions in different parts of your body including the mediastinal area. But as I've pointed out in the past, my kidneys improved just enough to come off dialysis and the need for a transplant went away for now. Should my kidneys lose function and I have to go back on dialysis and possibly need a transplant, I don't know what would happen.
Thank you for sharing your story. I too lost 50 pounds and was keeping it off until they put me on BP meds that gave me very bad edema. I am off of them and have lost most of the eight and have ankles again. I have a friend who out of the blue just crashed into dialysis because she has Vasculitis. She has not idea where it came from. She is going through an infusion now to help her. I hope it works. Do you do an infusion as well for the GPA?
My GPA was DX in July of 2017. They wanted to give me Rituxan which is the infusion but couldn't because of the mediastinal mass I told you about. Rituxan depletes your B cells so if you have cancer or suspected cancer, you should not have it. So what happened is they had me get a CT scan every few months and saw that the lesion was actually shrinking slightly so they considered it non cancerous and I was cleared for Rituxan. I had 4 infusions 1 week apart in April of 2018 and 4 more 1 week apart in August of 2018. That drug, along with Azathioprine which is an immunosuppressant , and prednisone, I eventually went into remission in Sept 2019 and haven't had to take any more drugs for GPA. My kidney failure happened quite suddenly also but I was very sick for about 4 months prior and having seen 4 different doctors, none of them could figure out what was wrong with me. The majority of GPA cases are ANCA associated and there is a specific blood test for ANCA but because GPA is fairly rare, doctors don't think about it. They don't know the signs to look for. If I had been DX earlier, I would not have had to go through all the crap I've been through for the last 6 years. It affects small and medium blood vessels which in turn affects nerves, joints, and mostly lungs and kidneys. GPA is normally DX and managed by Rheumys but luckily for me, the Neph that I see is who DX me. He studied GPA in the 1980s while in med school because it was one of the causes of CKD. I hope your friend has the same luck I did and recovers enough to eventually go without dialysis. GPA does relapse and that is on my mind every day. I've often thought about what if I had to go back to dialysis, what would I do. I liked the convenience of PD but I have a lot of scar tissue on my abdomen from the past PD surgeries plus I've had several abdominal hernia repairs. I couldn't stand being in the hemo center. It was a nightmare. I would probably try home hemo.
Then in 2019, I was DX with prostate cancer. Luck of the draw I guess.
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