Has anyone on here been kicked off the transplant list for not going to dialysis all the time??? I don't always make it due to different reasons like not feeling well, nauseous, diarrhea etc. Who wants to go sit in a chair for 4 hours when you don't feel good enough to get out of bed? My one kidney is working better than some other people's with lower eGFR than mine that are not even on dialysis yet. I take furosemide when I miss going or on the weekend. I feel yuck after dialysis instead of better. The only symptoms of ESRD that I have had were shortness of breath if I over do things. They started me on dialysis after right kidney removal without seeing what my left kidney could do. I sometimes think it is more of a money thing for them. Anyway please prayer for me to get my kidney soon as I hate dialysis with a passion. I feel bad that someone has to die for me to get a kidney but I don't have anyone to donate one for me. Please also pray that I get called but end up having to leave because the kidney wasn't a match after all. That would be such a let down. Prayers for all on here and God Bless you all!!!
Kicked off List: Has anyone on here been... - Kidney Transplant
Kicked off List
Actually, incompliance is a top of the list reason to not keep you on the wait list (your refusing dialysis is the evidence that you are not compliant). Imagine if you accept a precious kidney and then you refuse to take medications because you "don't feel well taking them", leading to a rejection. Now you have hurt not just yourself but someone else and their family who could have benefited from receiving that kidney instead of you. Please, if you are serious about having a better health outcome you need to listen to and work cooperatively with your medical team.
Please also give the dialysis center advanced notice if you decide to not go again. If you just decide to not show up you are wasting tax payers money and precious medical resources that other patients deserve to receive.
LisaSnow said exactly what I would have said.That being said, I had a horrible time on Hemo Dialysis. I was allergic to the dialysis filter and ended up in the hospital several times. My blood pressure would spike to over 200/100.
After 3 months, I switched to PD (home dialysis) with a catheter in my stomach. It wasn’t perfect, but it was better for me.
Perhaps talk to your transplant team about home dialysis.
A friend of mine and I took dialysis together. He would cheat on what he ate and drank. He got his kidney one week before I got mine. All I can say is he still didn't follow the rules and he didn't last a year. All I can say is that these rules on dialysis and transplant are there for a reason. I followed the rules (like you it was sometimes hard) but I just celebrated my third anniversary of my transplant and am feeling great. I think like one of the responders said maybe P.D would work for you better. Good luck.
Wow, as an auditor it pains me when I hear about people who can't follow the rules but expect others to give them what they want. I don't always feel well (not on dialysis but stage 4 at 22%) but I take a shower and go to work. I like foods that are on my "don't" list so I don't eat them. I would dearly love to get a transplant when my time comes but if I have to do dialysis first I'll do that.
Can you please explain what exactly he did not do that he was asked to? Thanks!
I didn't mean that he got kicked off the list, I meant that he died. His wife told me that he would skip taking his medicines and did other things that are banned. I am sorry if I misled you.
I understood that he had died. I am sorry. I have heard many stories of people getting transplants that didn't take care of themselves and ended up back on dialysis which is a shame after waiting years for a transplant. I will strive to do what I am told and be very grateful for a kidney. Like I said before I hate that someone has to die for me to get one. You would think that by now that someone invented an artificial kidney. If they can invent an artificial heart they should be able to come up with a kidney.
People die with or without donating their organs. I am not sure you need to feel guilty about being a recipient of a deceased donor's organ. You should however, be grateful and honor the person's good will by doing everything possible and follow medical advice so you can keep the transplant healthy.
Would have to agree with others. Pd is a better choice. I found it less confining because you do it at night and for me, didn't have the side effects of hemo. Some of the stomach issues and tiredness you are experience may be due to treatment inconsistency. Try to do better and maybe see a counselor. There may be a reason you are avoiding dialysis that you are not acknowledging. Take care.
The symptoms that you say keep you from going to dialysis, are exactly the reasons why you need to go. Dialysis will help get rid of those feelings. You’re just doing yourself no favors at all by skipping dialysis. You don’t feel as good as you should and they will kick you off the Kidney list.Look, I know. I’ve been there. Yes, I felt like yuck afterwards. But I had to go without dialysis for a week or more because of complications with my port and believe me, it can get worse.
I do wish you the best of luck.
Hi. Kidneys are hard to come by as are all human organs. They are in great demand and in short supply. Those in charge of waiting lists want to be sure that people on the list will do their best to appreciate and care for the organ they receive. They look for compliance with rules and treatment and motivation to stay as healthy as possible. They want the organ to go to people who will do their best not to waste it. I know dialysis can be a drag, but look at it as a means to an end, an end to dialysis and a start of a new healthier life. Please try a bit harder to "follow the rules and advice of your doctors for your own sake. Perhaps as someone suggested, home dialysis will be better for you. I hope and pray that you will change your attitude and that you will soon be placed back on the transplant list. Best of luck! 😀
Please discuss with your doctor the reasons for attending dialysis. It is not just to remove fluid from your body. It is also to filter out the things that your kidney can no longer filter. If you end up with a buildup of potassium, it could trigger a fatal heart arrhythmia. If you have a buildup of phosphorus, it could impact the blood vessels and make you ineligible for a kidney transplant. I don’t know if you pay attention to your bloodwork week after week, but it is a definite indicator of how dialysis is affecting your body. I agree with everyone else that you should talk to your doctor about pursuing another form of dialysis that might work better for you.
I know this is not easy and i know there are times you just dont want to do it, but you have to if you want to live. I dont blame them for kicking you off the list. There are thousands of people who wait years to get and organ so they need to be sure the person they give it to is someone who is going to take care of themselves and follow the doctors directions on your health. Maybe talk with a therapist to help you get thru the hard times. Ive has my transplant for 33 years and still going strong. I did not have family or friends who could donate either so i had to wait for a deceased donor. It is well worth it to follow the rules.
I understand your frustration. I sometimes feel like being on dialysis is like the song "Highway to Hell." It is a lesson in complete humility and obedience. We must do what we don't want to do to stay alive and to achieve a healthier future. Missing it will cause you to feel even sicker. I don't know how long you have been in dialysis but I know that for me it took the first 6 months for my body to adjust. Hand in there and go, your body will reward you later.
Thanks for your replies. I am still on the list and due to get a kidney anytime this summer. If I don't get a kidney this summer I will definitely do PT. Does anyone know what the flow antibody results mean? I have been negative, watch, & positive. Oh believe me I will follow the rules and take all the medicine, as I do, now. I have just had a bad experience. I was holding study at Stage 4 and undergoing all the pre-op testing when a cyst in my kidney was MRIed as renal cell carcinoma. I had a CT biopsy of my right kidney that diagnosed me as having renal cell carcinoma. They took out the kidney and the results showed no renal cell carcinoma. I had to get a heart catheterization & before I left the hospital I was complaining about right upper leg pain. The nurse just said to take Tylenol and rushed me out. The pain progressed. I took left over pain pills with no relief. Went to my local hospital's ER and was found to have a blood clot with no circulation down that leg because of a Perclose devise from the catheterization. I was transferred across the bay by ambulance. Morphine helped ease the pain. I ended up having to have surgery to remove the blood clot & was in the hospital for a week. I live on the Eastern Shore of VA and have to pay a toll for the Chesapeake Bay Bridge Tunnel plus gas. So when I get my kidney, my brother who has been taking me to all the surgeries & doctors visits, plans on staying on the Shore with me to be able to care for me and take me to all the after transplant visits. He has been great about everything. He lives about 3.5 hours away. Actually the hospital where I am to receive the transplant is closer to his home. How much time do you have to get to the hospital after you get that wonderful call? Thanks again. 🙏🙏🙏🙏🙏🙏🙏🙏🙏
Hello dad mad I am in stage five but I’m not on dialysis yet but I have no symptoms no shortness of breath or edema or nausea but if I did my doc said I need to dialysis. And I will do pd from home . The flow antibodies measures your antibodies my are always positive and there a list of numbers that goes with them they have to match up . But right now it hard to match me cause my so high but it not impossible. I live across the bridge you are referring too in Hampton roads are you using Sentara Norfolk for transplant center or you going to vcu or somewhere else. If you get the call you will have time . My brother got the call in New Mexico he had to drive five hours .
Thank you. Yes Sentara Norfolk General. I have not missed a lot of days of dialysis, I was just curious about being kicked off the list. I am still on it. God Bless Us All 🙏🙏🙏
Regarding how much time you need after the call before you get there, depends on the call. I got 2 calls to warn me there were organs available for me (Kidney and Pancreas). I was told to try to be there in 5 hours. For both of those calls I was called back within an hour and told that the kidneys were going to multi organ transplant people. I never had to leave the house. For the 3rd call (where I got the transplant), I was called at about 5 pm and told to be at the hospital by 9am the following day. They typically call after the family has consented to donate the organs and the surgery is scheduled. That time was delayed in my case from 2 pm to 1am the following day. My surgery was scheduled at 5am.
When they remove the organs, they harvest the lungs and heart, then the liver, because those have to be transplanted sooner. At about 4 hours they remove the pancreas, and then they remove the kidneys. If you ask, they will tell you when they will begin operating on the donor.
When I arrived at the hospital, they did a covid test. After the result came back negative, they drew blood, and did some imaging tests. Then I had to wait until 5am.
Regarding being "non compliant".....I get your pain. I was labeled non-compliant, because I didn't fully explain. I was on peritoneal dialysis and was told to not do dialysis if my BP was below 110/70, which for me is high blood pressure. I became compliant because I started writing on my sheets that I skipped dialysis because of low BP, and indicated my BP level. I was also stunned that they had "tattled" to the transplant team.
I am surprised they started you with hemodialysis, unless your BMI is over 35, or your home isn't able to accommodate the PD equipment, because the peritoneal dialysis is less toxic to your body. I can only empathize with your plight, because I have heard how sick the hemodialysis can be. You also have to be more careful with your diet on hemo than you have to on peritoneal. I feel bad for you.
I also, at times, felt like I was a money machine for the dialysis center, because they charge more for those with private medical than they charge for medicare/medicaid patients. The home peritoneal dialysis machine was a $5,000/month rental. The cost of the dialysis supplies are between $70 and $85,000/year, depending on wat supplies you use. What a racket! I also felt trapped going to them. They drew blood and decided which vaccines I needed and added iron supplements and other things that I knew cost my insurance company more $$$. Maybe it was necessary, but it didn't seem that way at the time.
I feel sad for you. I hope you can work with the dialysis staff, nephrologist, and the transplant team to figure out a solution for you to become officially compliant, get that kidney, and become healthy again. Good luck, my friend!
Oh yes, it's all about the money and don't even think about putting in a grevience when applying for or are waiting on the list. Some dialysis centers treated me as if I wasn't even human, a 'Thing. " Tattaling? For sure!
My dialysis center tried to sabatosh and possibly stop my chances of getting a kidney by lieing to the transplant social worker saying, "She has family problems, no good support system. " Basically implying they would be taking a big risk on me. The transplant social worker treated me way different after that. All of a sudden transplant requested **detailed therapy notes, and I needed a mental health clearance by a Psychiatrist.
They needed to meet my, "Back up support person" *in person. My dad had to travel here from across the country to prove to them that I actually had more support. My counselor suggested I file a discrimination inquiry into all of their demands if they added on to the list. She had worked with x drug addicts that needed livers, and none of those things were ever required? I smell a rat!
These places can be pure evil. They did that to me though not over money, but to retaliate over me making valid grievances that they refused to give any real solution to. After going through all of that, I moved out of the state to save myself and stop the rath of the clinic. I didn't want to take the chance of dying while constantly proving myself to be a descent candidate.
Thank you. They wanted me to do PT in the beginning but I thought it would disturb my husband plus we have 2 big dogs. I also didn't want to be hooked up to a machine every night but I am anyway to my BiPap machine. If I don't get my kidney this summer as told I plan on switching to PT. My husband now sleeps in a separate room. All of this ordeal has made me unattractive to him plus I still snore with the BiPap. What kind of surgeon puts in your PT tube and how long after can you start using it? Also how long was the training? How has it been for you since your transplants? God Bless You & I will pray all goes well for you.🙏🙏🙏🙏🙏🙏🙏🙏🙏
The Peritoneal Dialysis catheter in my case was installed by a Vascular surgeon. I have heard that in some cases it will be installed by a nephrologist (kidney surgeon). The typical recovery is about 4 weeks before you can start dialysis. In my case, I got an infection and I healed slowly, so it took 8 weeks. I had one visit with the dialysis center (Davita) before the surgery. The training is designed to be completed in 4 weeks, either once or twice a week, I can't remember. My husband also ignored me after I got my catheter installed in my stomach, but I think it was because I got that first infection, and he was worried about causing me an additional infection.
My kidney/pancreas surgery was 5/11. Now I am almost 5 weeks post-transplant, and am feeling good, but still restricted on things like lifting. At about 4 1/2 weeks, I could control my pain with Tylenol alone, and not Norco.
Also, At 4 weeks I worked my way up to walking .7 miles in 50-60 min. The last 2 days I could walk 1 mile in 20-25 min. I did take 2 extra strength Tylenol, though, and iced my abdomen when I got home, but it's progress. All they tell you after your transplant is to "increase the amount you walk every day". When you ask "Is the quantity I am increasing time or distance", crickets chirp, because the doc doesn't know the answer. I found this forum trying to find the answer. Every hospital tells you to increase it, but they don't define what you are increasing.
If you get the PD catheter installed, keep the extra Norco, or other pain killer they give you, in case you want it to supplement what they give you after the transplant. They gave me 40 Norco after the surgery, and I have 1 left, plus 5 left from my PD catheter surgery that I didn't use. They gave me 15 for my catheter surgery.
I could be totally missing something here and I apologize if that's the case, but I would assume that it's *both* time and distance that you're increasing as far as the walking. If you walk for a longer time than previously and maintain the same pace, then also increasing the distance would be completely unavoidable.
Thank you for the info and Bless You. 🙏🙏🙏
I know dialysis sucks but if you want that transplant you gotta follow through with it. The docs want to make sure you're able to be compliant so you can take care of your new kidney, including the meds you'll have to be on and the doctors appointments involved.
If I don't get a kidney this summer I want to switch to peritoneal dialysis. I will stick it out until then. At least dialysis is better with a fistula than it was when I had a graft. I have a graft tube in one upper arm and a fistula in my right upper arm, which can be a pain at times because I am right handed. I have had the chest catheters on both sides. I got sick of the graft not working so I got the chest catheter and then had the surgery later for the fistula. I have just these past few weeks gotten used to the fistula. Take care. 🙏🙏🙏
My 2 cents.
I started dialysis when I was 21 until I got my transplant when I was 30, this included the 3 years I was removed from the transplant list because I had cancer and the 6 months I put myself on hold so I could finish my degree. I started with hemo then switched to PD a year later. I managed to stay on PD for about 3 years before switching back to hemo because of multiple infections caused by my cath getting colonized, dramatic weight loss (like half my body weight in 6 months), and extremely low blood pressure.
Surviving dialysis is a state of mind; it's a part time job you hate because you have no choice, but you do what you can to make it manageable while you are there. For me finding a routine and making myself comfortable were the two keys to making it through dialysis. The techs used to tease me because I looked like I was coming into camp for a week. I had an old twin comforter that I placed over the chair so I wouldn't sweat, a pillow for my back, a pillow for my head, a sheet, a lightweight blanket, and an electric warming blanket for my legs. The last was the most important, it kept the blood circulating to my feet and legs so they wouldn't freeze and this prevented my legs from cramping when I got up.
I also had a good time spot that I had to fight for at 5:30PM on MWF with 5 other people in their 20s. None of us were diabetic and all of us were underweight so we would share a giant bag of starburst. BTW, great dialysis friendly candy and it really helps with the horrible taste in your mouth.
The bottom line, find what works for you.
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