Annual Humiliation:

[Bassetmommer]

I wanted to follow up with what happened with the Transplant team last week. First of all, shame on me for expecting something else. Since I was off the list for two years and just reinstated last fall, I had never gone through an annual meeting. I thought when I talked with the nurse coordinator, that this was pre-prep for surgery and my time had come. I had built up such anxiety over this appointment. Woefully wrong on my part. It was just an annual humiliation. That is what I am calling it.

If you remember from my last post, the nurse coordinator was not clear on anything. However, she said that my weight was a big deal and that the surgeon was going to look at my belly and decide whether or not they could do surgery. My interpretation was: in the NEAR future. Wrongo……

I actually did lose 18 pounds in 38 days. I was very proud to do that. I am going to try to continue, but not as drastically.

We get there, and I am sooooo wound up, I started to cry. And went to the bathroom, and calmed myself. The waiting room we were sent to was completely empty, included no admission person. We were admitted previously in another area and then sent there. We waited for another 15 minutes for someone to come out. The first thing they did was weigh me. I was prepared to fight and brought pictures of my scale from home. But their scale matched mine. Then, I had to walk fast between two line three times. I had to do it under 6 seconds; I did it in 3 each time. Then we went into a room and the nurse went through all the vitals and so forth.

I did tell her and anyone who would listen what the nurse coordinator had said. Just to review, the NC said, “my weight was an issue and not to have much hope.”

The next doctor was this young dude who is very arrogant three years ago. He has mellowed some. He put me through a battery of questions about my physical abilities. One series of questions was “can you walk for a short period of time”?, yes I can…”for a half mile?”, yes I can, “mile?”….pause yes, “two miles without stopping?”… I wanted to say, can you? I was waiting for “uphill, both ways?” He asked a lot of questions and then said that he was ok with things and listed what else I had to do for upcoming tests. And then he said, "and you will have to do this for the next couple of years." You could hear my heart break. It was just an annual evaluation, and that I have at minimum, two more years before I would be in the upper rotation.

We waited for a long time for the next person, which was supposed to be the surgeon. This old curmudgeon came in and explained that the doctor was in surgery, and he was not coming. He would evaluate me. I hopped up on the table to be examine and he pulled up my shirt and down my shorts. My husband was sitting right there and he was not amused with this guy at all. He poked my belly like the Pillsbury Dough Boy and I wish I had giggled like him, but I was too humiliated. He showed where the incision would be and then in medical terms said I was fat. We talked about bariatric surgery and the snafu I went through and he said he would talk to my Nephrologist about it. He seemed to say that if I lost weight, I would get a transplant faster. In other words, we don’t like fatties because they get infected easily……

I got down and I start asking about the supposed Davinci arm they have for robotic surgery for people of size. This was what they told me 3 and half years ago. Seems they are not using it… he went on for a while and honestly all I heard was buzzing. I have been fed a line of crap since I started with them. I asked if I lost weight would that move me up, and he said maybe. What kind of BS is this? We kept talking and I said something about me doing home hemo dialysis and his whole demeanor changed. He went on about how HHD patients are the best because they are so disciplined and careful. I thought, "you old SOB, you obviously did not read my chart before you came in."

Next was the social worker, and she was nice. At this point, I was fed up I do not even remember what we talked about.

Then the dietician came in. OMG, is anyone looking at my Chart? She was a young person and very nice. She had no idea about who I was or my history. I know there are notes in my chart that my nephrologist has put in about my diet and previous weight loss and how I work with newly diagnosed CKD patients. I talked about plant based and all the work I have done in Renal nutrition. We talked about bariatric surgery and she is against it. At this point we had been there four hours and I was done.

I have to have the next round of heart tests, nuclear and echo and EKG, and then nothing until next year. Two more years of HHD. I will be honest, I was devasted. The Nurse Coordinator was right about not having hope, because they took it away in a heartbeat. I know lots of you reading this are like, “get over it chickee, I have been on dialysis for 20 years…” Right now, I am not overly excited about doing HHD for years. I put such hope in that visit thinking I was going to be up for transplant, that right now, I have to adjust to the reality. I do know I did talk to EVERYONE about patient-centered care and hinted that they ALL could take some lessons.

Now I am waiting to hear when I will have the heart tests done. The first time they did them, they screwed up things so bad and I was disqualified for transplant. The second time, I had NONE of the issues the first tests showed. So now I will worry about them screwing this up again. For now, I am on still on the list for transplant.

[Jamok]

Ugh! So sorry you experienced this! Annual ‘humiliation’ is so accurate. It’s such a hopeless, powerless, helpless feeling to have to rely on strangers in white coats to determine your quality of life. And the fact they do it with zero compassion and a ‘It’s just business as usual’ attitude can really eat into your sense of worth. I remember all those feelings as I went through evaluation and testing. Transplant centers really need to provide emotional and psychological support to their patients and training in empathy for the medical professionals that deal with ckd patients.

I was told I had three years to wait so I took my time with testing so I didn’t have to keep repeating it every year since I accrued time even though I wasn’t active on the list.

Try not to lose hope. You will get through it, and in the meantime thank God for dialysis as it sustains your life until you do get your transplant.

[horsie63]

holy shit do I know that feeling. My problem is .underweight but same humiliation. Dr didn’t like how I walked so made me do physical therapy which I just finished but now I have to have a cardiac catherization due to the stress test results. I feel like I’m never getting back active.

.

[drmind]

Sending hugs and hope that things get better for you.

[Beachgirl32]

I’m so sorry you had to go through this. Is this the only transplant list you are on? I am on two and my one close to home is super strict but the other one two hour away vcu is not as strict I was so suprised .I hope you stay on the list.prayers you past the heart test.

[Chihuahualover3]

Do you mind me asking who is doing your pre-transplant work up? What center? I had a lung transplant last year, and no one talked down to me about my weight. It was lose the weight and then come talk to us. After I had they didn't harp on it anymore.

[Bassetmommer in reply to Chihuahualover3]

It is with the U or R. This attitude is pervasive in health care. When you are a person of size, they cannot look past it.

[Chihuahualover3 in reply to Bassetmommer]

U or R? I'm sorry I don't know what that means.

[Mandelin]

sorry to hear this Bassetmommer. Don’t have a second transplant hospital within a couple hours you could check out to see if they are any better? I was registered at 2 and the one 2 hours away was the one that called. You have to be able to do all the follow up visits also. Keep your head up. They tell everyone 5-7 and it’s getting much better than that.

[Darlenia]

Sounds a lot like the procedure we went through with the exception that my hubby kept his street clothes on. The surgeon outlined the procedures (especially the arteries) on a big chart. That was very informative. He also watched my hubby walk and was especially interested in his diabetes status, telling him to go on PD to keep the artery needed for the transplant from calcifying. In my opinion, the transplant staff will find something to give one concern - be it weight, diabetes, heart, age, or whatever. As long as my hubby was on their list, we were happy. We were very grateful that they asked if my hubby would consider a transplant with issues. We quickly said "yes". We're sure that this was the one thing that really worked in our favor to speed up the transplant. I hope this was discussed in your meeting too - that is, if this sort of kidney interests you. Meanwhile, sending you lots of encouragement! It's like playing a game, making all the moves as needed. I'm trusting you will receive that gift!

[Bassetmommer in reply to Darlenia]

Yes, I am willing to take any kidney. I just went through all the shots for hepatitis.

[jflorax]

I'm sorry for your experience. Sounds like a very uncaring team along with a severe lack of attention to detail

[MominFL]

Sorry to hear your experience was poor and humiliating. Sounds like you’ve been successful in the past on loosing weight. Have you tried intermittent fasting? There’s a correlation in helping CKD as well as loosing weight. Thank you for your transparency in sharing your experience. I wash you all the best.

[Bassetmommer in reply to MominFL]

I have used intermittent fasting for 6 years. I do not eat before 11 and stop eating after 5. Not sure if it does any good. And I did lose weight and I will keep going. Thanks for the support.

[jodaer in reply to Bassetmommer]

Pay her no mind.

[Herewegoagain12]

Agree. This person doesn't get it. They also just joined and have not provided any information about her circumstances.

[Turtlelover1138 in reply to Herewegoagain12]

Yeah I kind of noticed that you guys had my response deleted. So much for freedom of speech. I always find censorship to be absolutely abhorrent. Freedom of speech means saying things that somebody might not like but you have the right to say it. To put it honestly both times that we went through the kidney transplant situations, it was explained to us what was expected. I'll put it on to see the doctor said a few things that a lot of people here obviously would not like but I do understand it. If you have uncontrolled weight uncontrolled diabetes you put a organ transplant at risk. And the doctors told us that even if you're on a list they take a look to see who else is on the list. And if they think that that kidney is going to go to a certain person who basically through what's been going on with their life will cause that kidney to fail much sooner they actually will hold back. They'll give it to the person who they feel will get the most use out of that kidney. My husband got 15 years out of it which is pretty good. Of course the immunosuppressants do a number on you as well two such as giving you diabetes which he never had before as well as a few other issues too. As I said the doctors were telling us this is both times that if they feel that the kidney is not going to perform well in somebody they're going to not put it in that person. They want to get best use out of it whether that's fair or unfair that's up to you to decide.

[Herewegoagain12 in reply to Turtlelover1138]

Fyi only the people who can delete a post are the moderators or owners of the site. I hope your husband gets his kidney and is able to live a long healthy life. I just hope it's not at someone else's expense.BTW I was 225lbs and a former heavy drinker when I got my liver transplant and it's been 8+ years with no rejection issues. Haven't had a drink and lost 80 lbs.

In your example I would be dead.

[Turtlelover1138 in reply to Herewegoagain12]

That's good that you haven't had anything to drink. See this is one of the things that the doctors look at which I don't necessarily think is appropriate but it's what they look at they look at whether a lot of a person's problems are self-induced or whether they are external. With my husband PKD is a immunity disease. Basically it causes large cysts to form on your kidneys or your liver or your lungs or your heart. It's a hideous thing to have. Luckily with Richard it only affects his kidneys. We have a friend where it affects the kidneys and the liver and the lungs. I guess the one good thing with her is that the bad part was only in the liver. Obviously you can have varying degrees of severity Richard had one of the really severe cases where you end up needing a new kidney by the time you're in your twenties or even earlier. With our friend it was not severe with her lungs or her kidneys but it was with her liver. Her husband was able to donate a lobe of his liver. That's the one good thing about a liver transplant is that it grows. It's true I did not particularly care to hear the doctors talking about that some people even though they're on the list get looked over simply because of their other health conditions. Usually what it is it's a severe obesity coupled with uncontrolled diabetes. In that situation if they cannot get that under control giving someone a kidney basically the kidney will reject and die in a very short period of time. In the doctors look at that I know it's not fair to basically be playing God and deciding who gets what. Now as to censorship basically all you need is have somebody file a complaint and then the moderators pull it. That's why I do not like censorship and I feel that people should either have the courage to unfortunately read stuff they may not like rather than complaining and seeing that person get shot down that is not fair. Free speech is a two-way street.

[Bassetmommer in reply to Turtlelover1138]

As I said, this place is where we share and not attack. Your post was removed by the moderators. And just so you know, I worked for the same medical center as the Patient-Family Centered Care Laison in my role as Director of Education for the Home Care Division. So, there is really not much I do not understand.

I am really sorry you are going through so much with your husband's situation. It is scary and frustrating. We are here to support you and welcome your concerns because someone else is going through the same thing. There is comfort in knowing you are not alone. THAT is the reason I write as I do.

Just for your information, I fight like a warrior. I was denied the first time three years ago. The BMI requirement was under mine. However, two years later, they lowered it to where I had been for the past THREE years. I also "failed" some of the cardiac tests. It got screwed up badly including the IV pulling out leaking all over me before someone noticed. I was retested and NONE of their issues were there anymore.....interesting right? You have to fight to get what you need. That is why we are called warriors.

I hope your husband gets another chance. How would you feel if they said, "nope, you lost the last one, we not going to give you another chance?" I hope that doesn't happen. Keep fighting!

[Turtlelover1138 in reply to Bassetmommer]

I don't think there's a situation with the doctors normally saying nope you don't get another one. The only way would be obviously if the person is not taking care of themself. And that would be the only way I would see that happening. I mean I'm sorry if it offends people but if you don't take care of yourself, it's not good for everybody else who needs a kidney as well or whatever organ they need. Richard is 62 so age-wise he still in the viable range. I know once you get up into your 70s at that point unfortunately you may be on the list but they tend to just pass you over.

[Bassetmommer in reply to Turtlelover1138]

Who's being negative now????? Just for your information, age is no longer a criterion. If you read through the posts on the website, you will see there are people who are in their 80's getting transplanted. Weight limits are also set by the hospital. Some are more restrictive and here is the reason why.....Medicare pays for the surgery. If the outcome is not good, the kidney fails or there is uncontrolled infection, they hospital gets "dinged' In other words, they do not get paid. This is the driving force for their decisions. It's all about the money. Some hospitals, the larger one and private ones, are actually more accommodating.

I hope your gentleman is successful and that they help him.

[Turtlelover1138 in reply to Bassetmommer]

Yes I understand about the Medicare and Medicaid covering the transplants. We have insurance through work so that's covered so that's one of the reasons why the hospitals are definitely a little bit more accommodating with us. Because they get paid more from insurance than from Medicare or Medicaid. The hospitals that we go to our Mass general currently and in the past it was tough medical center both are huge hospitals in Boston. In the kidney field Tufts probably has some of the best doctors in the field and they have specialists that don't do the operations but are absolute top notch in their fields. The main reason that we're not at Tufts which I would prefer, is the insurance changed and Mass general is actually associated with the hospital that Richard works at. So you're right it's all about the money. You probably heard that during the pandemic hospitals got $37,000 for each patient that had covid. It's amazing how many people who had the flu died but were marked as having covid. It's a very dirty little secret in the medical world

[Darlenia in reply to Turtlelover1138]

Medicare does not make standard, one-size-fits-all payments to hospitals for patients admitted with COVID-19. The $13,000 and $39,000 figures are based on generic industry estimates and averages for admitting and treating patients with similar conditions across hospitals. The higher figure is what Medicare may pay if a patient winds up on a ventilator on an extended stay. Keep in mind hospitals charge a lot for using their expensive equipment, Medicare responds to their bills in a measured manner. If a person with the flu uses the same level of care with the use of the same equipment over the same the period of time, chances are Medicare will respond similarly to those bills. (Covid is generally much more severe, especially targeting the lungs, so a flu patient receiving the exact same treatment and protocols will be unusual).

[Beachgirl32 in reply to Bassetmommer]

I wish that was true about age “Just for your information, age is no longer a criterion” that not true at my center close to home 71 is the cut off ate the last day you are 71 you are off the list .That why I listed at another. Enter an hour and half away no age limit there

[Bassetmommer in reply to Beachgirl32]

Holy smokes, that's terrible.... yikes...

[Turtlelover1138]

Okay my husband was born with PKD it went into stage four kidney failure and about the age of 38. He went on to peritoneal dialysis for a few years. And eventually got a deceased donor kidney. The kidney lasted 15 years which is pretty damn good in that situation. It is now in the failing stage so he needs a new kidney. Physical wise he's in very good shape. No weight issues blood pressure is a little high obviously because of the PKD. The first time around was through Tufts medical in Boston. I went through all of the seminars met with the doctors met with the specialists. They were extremely informative gave you all the information you needed to have they steered you in the right direction to do research. So as I said that kidney lasted 15 years. Right now he is gone back on to peritoneal dialysis it's been on it for about 3 weeks now. We've been hoping to get a live donor. Sometimes you hope your friends will step forward and become the hero. I was a little disheartened to see how many of our friends were not heroes. My spouse works for a medical center and a lot of the people there came forward to donate. Unfortunately every single one of them was turned down for various reasons. The one that really kind of all put it honestly upset me is we had one person who has a touch of asthma. Other than that she was absolutely perfect and I was a little annoyed that Mass General was unwilling to accept her. We now have two relatives that are stepping forward I'm not sure how well it's going to work because there is definitely a bit of a weight issue although they have gotten past the question answer so I'm a little surprised there. As for myself why am I not a donor I would be but unfortunately I have high blood pressure and I am overweight. I'm going to be trying to lose some of the weight but still I think that's more for my health than for my spouse. Obviously if these two relatives do not make it through then we basically have to sit like everybody else through the waiting game. We did that the first time I'm hoping that we don't have to do it this time but if we have to unfortunately we have to. Now I've read a number of people here who have had issues with the entry ports becoming infected that sort of thing. I'll tell you my spouse is absolutely spotless in this sort of thing follows everything that the doctor say and has never had a problem. I mean the bathroom is full of so many antibacterial items it's unbelievable. And that's the thing you have to follow through with absolute rigidity.When he sets up his machine and gets ready to hook up I actually have to leave the room until he's ready. So there I think that gives you a pretty good idea where I'm coming from. My spouse is taking everything with Grace and dignity. As I said at the two hospitals we've dealt with in the past including our current one we've had nothing but professional treatment and politeness all the way down the line. This is one of the reasons why I am somewhat of as you would call a doubting Thomas. Now the text that I've done here is what is known as vocal text so if there's some words that are misplaced please understand I can do vocal text a hell of a lot faster than I can type.

[HSV21]

Oh Bassetmommer I am so sorry for this happening to you but it does not surprise me after my own meeting yesterday with my transplant surgeon at the local center.

I have lost enough weight to be on their list finally, yet the doctor was totally negative about me. I think he came in and took one look at my stomach, the fact that I am a woman, Yes, a FEMALE, and older (67) diabetic. He did not say they would not put me on the waitlist, but pointed to my right hip - fat and all - and said this is where a new kidney would go. You're at high risk because you are diabetic! HELL - diabetics are the largest percent of people needing a kidney transplant! What got me was female, and then I looked up their stats. Sure enough twice as many men as women are tranplanted there. Even across US, twice as many men are transplanted as women. He said it has to do with infections, women mainly get UTI's. I mean he could not be more negative. He said I would have to pass a 6-minute walk test with monitors, so they are setting that up. Told me to get stronger, join an excercise program but no specific goals for what is strong enough - a good way to get out of letting on list. I fully expect a reject letter or something to put me off. He was disheveld looking, wore dirty cowboy boots, long hair, unshaven, acted like he did not wan to be there. And the hospital itself is so dark, dirty and depressing. I can't see ever having surgery there. I hold out hope for Dallas and my son meeting his goals instead of having to go here..

I am so sorry that U of R doesn't do the robotic surgery there. Please go to another transplant center and another until you find one that is better to work with. My thoughts are always with you!

[Bassetmommer in reply to HSV21]

Oh, that sounds so much like the old curmudgeon who came in. He was almost rude. He was not the surgeon I was supposed to see, and I think he was irritated by that. He was as negative as could be...until he found out I was doing HHD. Boy he changed his tone. Not sure why,