This is the follow up to my long post about what has been happening to me. A quick review. I was told after I did the whole evaluation progress in 2020-21 that I was overweight, BMI too high, and that I had an abnormal cardiac result from the nuclear test that I had done. I had a report or 6% ischemia on my heart, which is basically a stiffening of the heart wall. They decided to start my time, however, I was placed as inactive.
I kept getting letters saying the BMI level required for transplant was less than 40; even receiving one in February of this year. Then, in June, I get a letter from the transplant group saying the BMI was less than 45. MY BMI was less than 45 for the last four years. I called the transplant nurse who was so casual about the whole thing and mentioned they changed that BMI a while ago. (I have letters that did not indicate that). Then she said, well you still have cardiac issues.
I immediately called my cardiologist who said they would rerun all the tests. (I made this sound easier than it was because at first the cardiologist did not want to subject me to another nuclear test. I had to explain why and then he relented) The transplant team agreed that if the cardiologist cleared me, they would make me active. The letter I have said "priority 1". I have this in writing.
I spent the summer getting the weight off that happened from the amlodipine and hydralazine my Nephrologist put me on. In early June, I had gained a pound a day and my legs looked like tree trunks. When I saw the cardiologist, he took me off them. I lost the weight and have kept it off putting me back to my lower BMI.
The tension of doing all the tests was terrible. Every test was a waiting game. First it was a CT. That came back, but no one called me on it. Then an Echo. Never heard back on that, either. Then two days of nuclear tests. I was completely unhinged with that. Get a call from the cardiologist the day of the last test, there was nothing wrong, the ischemia was gone, all functions were great, arteries clear and functioning, and he cleared me for transplant.
I immediately messaged the transplant coordinator and said..."well, now what?" She said that the results would have to go to the transplant surgeon for final approval and not to worry. The transplant team was not going to meet until two more weeks, she would let me know the day after of their decision. Like I said, this was sooooo stressful.
Today I got the final decision. Talk about ups and downs. She starts the conversation off with a cryptic comment about me telling my nephrologist what happened with the BMI. She was pissy, but I said that I did tell my nephrologist about the BMI issue. WELL.....NOW....the BMI was NOT an issue and that it was all about the cardiac issues. I just kept my mouth shut. They were not going to do anything about the cardiac issues because my weight was too high. I have it in writing. Then she starts in about an old dermoid cyst I have had on my ovary for 30 years.....thirty years. They never wanted to put me through surgery back then when they discovered it and NOW they are concerned. We went around on that and she is sending it to my PCP to decide what to do. I can tell you exactly what will happen, NOTHING. 30 years folks.... I even named him Igor. Leave him alone.
Then the one bright light in the whole situation. I am clear and being placed as active on the transplant list. My two years prior are counting as time served. I was elated......HOWEVER....she just couldn't let it be. She goes on to say, "Well, because you are Blood type A, it could be four years before we find a suitable kidney. YOU could hear the air coming out of me as I deflated completely. She goes on to say that your nephrologist wants you to start dialysis asap. I came back with, "What about the BMI condition if I start dialysis it has to be below 40? She replies with, "we want actually a lower BMI but the transplant team has agreed to your BMI even with dialysis." I have it in writing.
I feel like I have been B*tch slapped. Yes, no, yes, no. I will try to work all this out in my head. I am angry and joyful and then back to angry. One thing she pointed out was at one point my BMI was posted this summer at a higher BMI. I told her that was when I was on the BP meds that made me gain weight. That was true. But what I did not get into with her is the ineptitude of the techs who weigh you when you see the doctors. I have stopped allowing it when I can. The reason is that multiple times this summer, I had someone add four pounds to my weigh instead of reducing it for clothes. One nurse said they would take off for clothes and then did not change the record. The tech who did my echo added four pounds to my weight with clothes putting me at the breaking point of BMI. I actually called her and made her change it. She did on some of the records but not all. I even explained my reason and she still screwed it up. STRESSSSS
I see my Nephrologist at the end of the month. She is pushing hard for me to start dialysis, which is why I explained to her the weight issue. Since they have taken the BMI issue off the plate, I will probably start HD training next month or so. My labs are scary... GFR of 7. However, my Cystatin level was 12. I am going to redo the labs before I see her because I do not trust them. I went without fasting or hydrated. AND it took 9 hours before I got results. Where the heck did they go that it took that long to get results? The longer they sit, the worse the results. But in the end, I know that it is getting time. I feel great. No edema, not symptoms at all. I still am going to my aerobic and walking two miles a day. (By the way, I know that is why the cardiac results were what they are...I worked my butt off the last three years)
My journey continues. If I could change anything about the process for kidney disease it is the callous concern by the medical field of someone who is fighting for their life. One slip of a weight or lack of allowing for testing can change someone's chances for a better outcome. I have been fighting this disease and processes connected to it for close to six years now. In 2018, my neph said I would be on dialysis in six months. I have educated my own Nephrologist on issues she did not seem to get, especially from a patient perspective. I will continue to fight as I approach home dialysis. My Nephrologist keeps saying that it will change how I feel, and I will feel better. I don't feel bad now. I responded to her with this, and she lost her breath and could not reply.
I said, "I will be going from living to just staying alive."
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Bassetmommer
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Bassetmommer, first of all congratulations that you’re active on the list! Unfortunately, I can totally relate to the Tranplant Center ways and all the hoops you have to jump through to live. I have experienced the frustration from being put on hold for months for a 3mm lung nodule that has been there since 2014 because their radiologist was incompetent so I had to get my own pulmonologist to verify that nodule was not new. It still took them another month to activate me. Reading your post brings back the feelings of helplessness knowing my life was no longer in my control but in the transplant centers hands. And I’m so sorry you’re going through this! But, my story does have a happy ending/silver lining. If I hadn’t have been put on hold, if I didn’t have to wait, I would have missed the wonderful kidney that I have been gifted. Not sure if you’re spiritual, but I do believe in God’s timing, and He works all things out for our good. My faith helped me through the waiting time.
I’m also blood type A and I was told three years, and this was in 2019, I was on hold, accruing time until I finished all my testing, which was delayed due to Covid. When I was finally activated for a short while in October 2022, I started getting calls right away but none were viable. The second time I got activated in March 2023 I got the call in five days for a wonderful KDPI 19 kidney. All the waiting paid off.
My brother is also type A was told it would be even shorter, at 2 1/2 years or less. So I’m hoping it will go faster than what they’re telling you. Different centers have different waiting times.
Also, a bit of advice, when you get the call, ask about CMV and BK virus status of the donor especially if you tested negative for CMV and BK virus. And you don’t have to jump at the first kidney they offer you.
Hope all works out and you get your kidney sooner than you think! Take care, J
And one more thing, my nephrologist went by how I felt and as long as my phosphorus and potassium were in line, was willing to let me get down to three before putting me on dialysis, and I was at a gfr of 7 when I got admitted for my transplant and felt perfectly fine.
God bless you and your new kidney! How wonderful you were able to find a match. I pray that God blesses you with many more years of living your best life! 🙏✝️💯
Wow thanks so much. Your post put some hope back into my life Unfortunately, my potassium and phosphorous are both elevated. Again, I do not trust the labs. Last year, I had a lab come back with 6.3 for potassium. I was told to rush to emergency, which I did. They did an EKG and redrew the lab and almost 3 hours later it came back. This was after having a line put in for an IV and sitting in a corner of emergency listening to the wackos in there. The results: 4.7.
Yeah, all assessments including lab tests have error variance so you’ll get different results. I had two different results on my CBC data two weeks ago across two physicians. And the data for both came from the same blood draw! They obviously ran the test twice and there was a difference of 5.45 on one and 5.99 on the other for the overall WBC count. That is an example of the error variance on that particular test.
Yup, had the same thing twice. One blood draw and for some reason they ran the multiple tests twice and not one number match except the Cystatin C with eGFR. That is why I like that test and go by that number. According to my labs two weeks ago, my GFR was 8 on one test and 7 on another but the Cystatin C with EGFR was 12 and only down 1 point from six months ago.
Hey Bassetmommer, that is quite an ordeal with BMI, so sorry you are going through this. On dialysis - you don't know how bad you are feeling until you start it, and then realize that you didn't feel that great. But also keep in mind - if you start dialysis you might gain some weight. Just be prepared for it.
What an ordeal. Sorry you had to go through all that. It's scary how unfeeling and arbitrary the medical field can be sometimes. Congrats on making the list and I'll send positive energy you get a kidney soon.
You have helped so many people on this website. Thank you for sharing your experience. I hope your transplant is soon and without any complications. You are a good person.
Thank you, very nice to say, I believe in sharing stories because you never know who might find comfort in knowing that they are not alone with what they are going through.
Wow you have certainly had a rough time Bassetmommer. I was really shocked to read all of that. As someone who has just gone active after 16 months on dialysis I know how stressful it is. I too had heart issues and had to wait 6 months to find out there was actually nothing wrong with my heart. It is very frustrating. Regarding your GFR. I was very like yourself. My GFR was 7-9...I felt fine and was determined not to go on dialysis. Unfortunately I woke up one morning and realised it was time. I just felt like death warmed up. So it's just to warn you, you could suddenly start to feel unwell. It's not to alarm you but just to prepare you. I would also just like to say what a dam amazing person you are. Your knowledge of this disease absolutely amazes me sometimes. Please know that your help and advice has helped so many people. You actually seem to be more knowledgeable than the majority of my medical team 😁😁. Keep going my friend. You have the most amazing strength and resilience xx
Hey Ziggy, Thanks so much. I know that in my heart it is time. I will probably start training in October. When I started this part of my journey, I spent a lot of time getting as much training as I could. I participated in all sorts of patient advisory boards for pharmaceuticals and others. I learned as I went. And it helped that I had a healthcare background.
Part of the fear of dialysis is that I know NOTHING about what to expect. I will learn though. The company I am using has already asked me to be a patient advisor, once I am on and going.
One thing the medical world does not get and contributes to, is the guilt that accompanies someone with a chronic illness. To be told in the very beginning that this was my fault.... which was what was said because of my weight...has been a fight that I have fought my whole life. I know for a fact that doctors dismiss women and especially women of size. Patients have to stand up and fight for medical treatments. That to me is incomprehensible. How many times have we heard here on this forum of patients being dismissed with stage 3 CKD. As long as I have a breath in me, I will fight to change this. Not being a hero, just HATE injustice.
When I was getting prepped for transplant surgery, an ignorant and condescending young doctor asked me if my kidney failure was from uncontrolled diabetes or high blood pressure insinuating that I had caused this by neglecting my health! I informed him that I had ADTKD, Mucin 1, a genetic kidney disease that leads to failure 100% of the time regardless of lifestyle. I could tell he never heard of it. He got quiet and left.
Well stated! And then when you do get fed up and take a stand to advocate for yourself they circle the we wagons and almost shun you providing the bare minimum of communication, etc. It’s unprofessional and also incredibly juvenile!
You speak so much truth. I have been subjected to body language and nuances from providers that indicate some form of disdain or dismissiveness towards me. It doesn’t help the patient at all. I know I have a weight problem. However, I had an empathetic cardiologist tell me that some of my problem was genetic. It made such a difference in my not feeling like a complete sloth. Hypoglycemia and other factors would make me feel like I was starving, even having had a meal two hours earlier. A vicious cycle!
Funny, of all the doctors I have my cardiologist is the most compassionate about my weight. He told me that since I lost the weight I did and can't budge it lower that my body says this is where is should be and I won't lose weight without surgery. They turned me down for the surgery.
One instance I will never forget was way back. This was before I was every diagnosed with anything. I went to a doctor, not my regular doc who was on vacation, because I had this terrible rash that was spreading up and under my very large belly. She looked at me with disgust and would not even touch me and told me to go see a dermatologist. She actually went "eeewww". It was psoriasis which eventually was diagnosed.
Oh, my gosh! How degrading! It’s not like you were contagious. So discriminatory, and very unprofessional, I must say. I hope the psoriasis is under control. I just went through a similar rash, but it was more of a heat rash. Very painful! I sent my GP pictures through the health provider online site. He told me to go to Urgent Care. Urgent care looked, but did not touch. Told me to keep the area clean, and told me buy an otc fungal cream.🙄 I was in a lot of pain. I finally tried a product called “emuaidMAX” that I already had. It worked great, although it took a little while. It’s about $65.00 dollars for a 2 oz jar, but has been well worth it. I put it on my toenails to soften them up and even on my eczema that I have on two fingers. I now put some on the areas that usually break out after each shower and in between. It has kept it at bay. I have much more dry skin now that my kidneys are more jeopordized. Good stuff! I sure hope you can keep your weight stable. It is difficult. I lost over 40 pounds with the O, but I’ve paid a price for it, for sure.
Yes, I did post about my recent experience with Ozempic. I’ve been sick for a week and a half. I went to Urgent Care, but no pancreatitis. Bloodwork is normal except for the usual abnormalities. I started having stomach pains and nausea, and have not eaten hardly anything since.. eating small amounts of fruit, protein and vegetables. Drinking lots of ice water and eating some soda crackers. I’m thinking I may have an underlying stomach issue, which Ozempic made worse. I think I’m going to get an appointment with a Gastro MD. Things are tight going down. I know I have a narrowing of the esophagus. This stuff has a half life of about five weeks. I stopped taking, and don’t think I’ll go back…
I cannot believe the amount of time and torment you’ve through! You’ve really endured a lot, and I hope you will receive a new kidney, sooner than later. Unfortunately, I think that a lot of the people who work with transplant hopefuls, become somewhat calloused, and maybe a little jaded. The have no idea what you’re going through emotionally. I would imagine it’s somewhat of a tightrope. I hope you have a good support team in your friends and family. I am lifting you up in prayer and asking Jesus for His protective covering, to grant you peace and ease your stress during your waiting period. Also for understanding from the individuals at the Transplant center. You deserve respect and dignity. You are more than just a number! Keep fighting the good fight!
It's sinful what the team did to you. God, we're all fighting for what life there might be left and they start playing mind games with you. Thank goodness, you were able to stick it out and remain steadfast in your journey. I was yelling out loud asking life what the heck is going on with them when I read your post. So tragic that some people enter into a health profession career and know nothing about how important compassion is in their work. Bless the ones who do. Bless you for surviving this nonsense. Thank you for all you share with us and mostly for being a model to admire. I know you got this.
Thanks so much drmind. I am sure that what I experienced is not uncommon. We are all just a number in the system. Just to add to it...when she called me she told me that there would be a four year wait. When my nephrologist reached out to her in a message, she put only a 2 year wait. This person is a horrible gatekeeper. I have printed out all of her letters and messages and will be showing my neph..... who just happens to be now the Medical Director for the Nephrology division. It pays to know someone lolol..
Passive-aggressiveness at its best. But, careful about sharing too much with other medical professionals regardless. There is an unwritten law not to trash other members.
Yes, I function as though the medical people all know one another and are friends. I’ve started video recording my appointments on my iPhone with their permission. I use my vision impairment as an excuse. But I’m really doing this because there have been so many inaccuracies in my post appointment summary reports. I’ve discovered that those inaccuracies have decreased considerably since I’ve started recording the appointments.
Been there, done that, got the fat people got no reason to live BS. I too was inactive on the list and now am finally active. 3 years into a 6 year wait. At first they wouldn't even give me a concrete reason. I was technically below their BMI limit I was at 39.7. They wouldn't activate me though. They wanted me to "get stronger." I asked what that meant and they made me take a 7 minute walking test - which I passed with flying colors. So then they said they wanted my BMI to be 35. After a year of "getting stronger" and losing weight I got on the list. I've gained some back and am now switched from Wegovy to Mounjaro. These drugs are powerful, but it is still near impossible for a 60 year old, postmenopausal, insulin dependent, lifelong fat person to lose weight. I go to they YMCA 5 nights a week for 2-4 hours. I'm tired of getting tapped on the shoulder at 9pm being told to go home. I eat once a day. I'm back up to 212. Their "magic" number was 200.
And guess what? There are NO studies showing people at our weight are higher risk. I've asked them to show me the data and they can't. It is arbitrary. The entire BMI chart is an insurance chart that groups everyone over 40 as morbidly obese. 200 lbs is the same as 2000 lbs on that chart.
I'm just a few steps behind you. Lucily my eGFR has stayed in the 20s so I've been able to avoid dialysis. I got a little pin I wear to the YMCA to remind myself, "You are stronger than you think." We've had to be.
HI Barb, I know your journey has been hard and crazy like mine. We Fatties, they sure like to get rid of us all. This discrimination is so wide spread and it is debilitating. But all we can do is show them up and hope that the future will be better for someone else. Congrats on getting on the list. It really is a monumental achievement. And I bet you can out do most 20-year-olds on a physical fitness test.
I was just thinking this morning on a ride home that I will have this specter of waiting for a kidney haunting me for the rest of my pre-transplant life, which could be forever, and worrying about gaining weight back and disqualifying. I am not sure how I really feel about it putting up with this fear or just saying....$@#& it!
Unfortunately the stress you describe could lead to increased weight. It’s pretty clear that there is a strong positive correlation between stress and weight gain. Ugh!
Absolutely. There are three reactions to stress. Fight, flight and freeze. I freeze. My whole body stops, especially my digestive system. Especially the final part. Whatever the stress, I gain a couple of pounds during and then relief (if you get my drift) and the pounds go away after the stressor is gone.
I am really sorry that you have had such an awful medical experience....sounds like the transplant coordinator is a regular Nurse Ratched, making up rules on the fly. But it sounds like you are finally on the road to getting the transplant, and, even though you can expect some bumps along the way, it's finally happening. I wish you the best - you have been so helpful to me with the many questions I have asked in the past few years. 😄
I just want you to know how special you are. You open up your heart and share your life with us. You’ve been through so much and with every fight you get stronger. They shouldn’t make it so complicated for you it seems like they are against you. But you’re one strong women and we appreciate all your knowledge about kidney disease. You have helped us so much and I can’t tell you how much we appreciate you. You deserve the best and such a caring person. We need more people like you in this crazy world we live in. I feel in my heart good things are coming your way and you’ll get your life back. We wish you the best life ever. Thanks again I could say that a thousand time
Oh my, this made me cry. I really am not all that. I just can't stand when people get hurt. I can't stand when mistakes are made when they do not need to happen. And after working in healthcare for so long, I really can't tolerate the complete lack of compassion and in many cases, intelligence that seems to prevail in the system now. But thanks for your uplifting and inspiring words.
I can certainly relate to the BMI issue. I was normal weight most of my adult life until menopause and Hashimoto's hit at the same time. I gained 60-70 pounds, despite working myself into the ground at a very physically taxing job, and not eating enough to keep anyone alive. I tried everything under the sun to lose weight, and in the process probably damaged my kidneys more, because I was in so much pain that I popped NSAIDs, never over the daily limit, but for many years I took it day in and day out. Time passed, life happened, I got sick, very sick. I lost 97 pounds in 10 months. I was underweight; diagnosed with Celiac disease, got the weight loss stopped. GP wanted me to gain about 50 pound back, which would have put me at morbidly obese according to the charts. Etc Etc. I'm now at a good weight for me, large frame, tall person. Enter cardiologist, who castigates me for my weight, and marks me as a noncompliant patient because my weight is 2 pounds more than it was the last time he weighed me. They don't account for clothing, and I was weighed in the middle winter. Well, enough of that. I am so very impressed with how well you hang in there through all of your struggles. Good for you, keeping track of those communications. I just know that you will have a great impact on how other patients are treated in the future if you continue to educate your neph, and he passes that on in his new position. Oh, also related to the BMI : my sister in law was morbidly obese when she was at the point of needing to go on dialysis. She was advised to get on the transplant list, was told that her BMI was not a factor at all, but she declined. She is 71, doesn't want to go through a transplant, and is doing fairly well on dialysis. But she's still obese, despite losing 60 pounds in her first couple of weeks on dialysis. BMI is the biggest stumbling block to those of us who are not model slim. On the other end of that spectrum, I have a niece who has IBS and she can't get her BMI over 17 or 18. She was hospitalized at one point to try to stop an ongoing bout of having everything she ate passing through her at warp speed, and she was seen by a psychologist about her 'anorexia'. You really can't win with when they engage that BMI factor. Thank you so much for all that you've done for everyone here, and I include myself in that group. You've given me so much hope, and your sense of humor has made me laugh on some of the darkest of days. I will be praying that the kidney meant for you will not take 2 years or 4 years to find its way to you.
Thank you for your kind words. They need to throw out the BMI indicator. It is antiquated and totally inaccurate. Its just like the GFR scale that was different for blacks and non blacks... They finally got rid of that and that was because of patient advisory boards raising a stink and demanding its removal. The more we raise our voices, they will have to listen.
Appreciate hearing about your experience. In our experience, the front line person on the phone with us didn't have much "power", so my hubby avoided engaging with her as much as possible. Our lady simply collected lab reports and kept our file up-to-date. Once my hubby received approval to be on the transplant list, our gal then also had the power to "inactivate and reactivate" my hubby if something came up while waiting - for example when he got a uti and was on antibiotics - she appropriately "inactivated" and "reactivated" him. (One simply can't receive a kidney when one has an infection, a new heart problem, etc.) We figured out that the overall "approval or disapproval" for being on the transplant list rested exclusively with the transplant doctors who periodically meet and decide who qualifies; it wasn't in the hands of the record keeping gal. We simply kept our conversations with our lady businesslike - did you receive our labs? What else do you you need? When my hubby got his call, the call came directly from the transplant staff, our record keeping gal also didn't have have any direct role in that. (Our record-keeping gal actually called us following the transplant, not knowing he had already been transplanted. Lol.) So, everyone had defined roles - our recording keeping gal was basically a records clerk. We expected the wait to be longer - so be prepared, it may not take you four years to receive your gift - maybe collect a few things now that you want to take with you. As far as weight is concerned, I'm not a fan of BMI. If anyone is healthy and can engage in daily activities well, then that should be viewed positively. You mention dialysis. Interestingly, dialysis often helps with weight loss since it removes fluids that build up as kidneys fail. Maybe that will happen to you too. In general, it's important to be mindful that many will put on significant weight following a transplant and a new kidney can struggle with that, particularly if diabetes also enters the situation. Hence, transplant centers select their their candidates very carefully; they're closely tracked as to outcomes and can be given warnings or closed. So kudos on getting on that list, Bassetmommer! You crossed a lot of hurdles. A transplant and all the science surrounding it is truly awe inspiring. Please keep updating us on your journey.
Just getting into this. I can't add a thing over what others have said that talk about you, your endurance, persistence and intelligence. Oh, except that your humorous name for your cyst "Igor" is priceless
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Leave it to me, I got stuck in my compression socks today LOL!!!
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Newbie. 41 CKD stage 4
