I have been on haemodialysis since May. Having completed all the tests etc at the beginning of November, I was just waiting to go live in the transplant list. My previous consultant, who is now on maternity leave, said my results were good and she even said, I would probably receive a new kidney before she came back from maternity leave. I was really surprised to hear it could be that soon.Yesterday my original consultant came to see me regarding the transplant protocol etc. Now I feel as if I've been hit by a bus .
My treadmill test ( which I did almost 2 months ago and someone has only just looked at) shows there is a problem with my heart. He isnt sure what it is but it needs investigated He then said my Hepatitis B shots have not provided antibodies and I will need to do them all over again. Then he started going in about asking people to be a "live donor ". My husband has been tested but has clotting issues. I have ruled my sister out as she has a young family. Now I'm being told to ask anyone..work colleagues or strangers???? Im starting to think the medical staff are on another planet. I really feel as if im playing a game of snakes and ladders and now I'm back right at the start. He also said I.would be waiting 3 years for a transplant. The thought of spending the next few years either at work or on dialysis with no social life or a chance to go on holiday is really soul destroying. Sorry for having a rant. Just when you get your head around all this @#%@ ..its one step forward about 10 back 😞😞.
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I can imagine how you feel. I did the treadmill test as part of a series of about 6 or 7 trials you have to undertake to get on the transplant list. In my case too they said there was an issue with my heart after the treadmill. But they managed to lose the results and at one point actually asked me if I managed to take a photo of the machine in case that captured the results on the screen. This of course I did not have.
Anyway they gave me the benefit of the doubt and put me on the list. I heard nothing for about a year then the Covid pandemic came along and they suspended me from the list. I never went back on it out of choice. Additionally I am three years on from when I did the treadmill test and in worse shape so I highly doubt I would scrape a pass this time. I have been doing dialysis for three years now and rightly or wrongly I have accepted that this is my life.
Every consultant I have seen has told me to ask friend and family and even people at work for a kidney. One even gave me a booklet about being a donor to pass on. Well as you say these people must be on another planet. All my family headed for the hills when they heard I had kidney failure. Nobody has come forward and I am not going round putting pressure on people so I will stay as I am.
That said I do the best I can to enjoy life on dialysis and apart from not going on holiday then I can do most other things. I guess what I am trying to say is please try and make the best of a bad situation. I am sure eventually you will get the call. Take care.
Thank you for replying Rabbit. I had to read the paragraph about taking a photo of the treadmill, twice. Unbelievable. Im sorry things did not workout regarding the transplant list. Im so glad its not just me, regarding asking strangers for one of their kidneys. I dont like asking people for anything, let alone one of their vital organs. I think the next time my consultant brings it up, i might ask him for one of his kidneys. Then he can see how socially awkward it is 😎 . Im sorry you have not had support from your family etc. Mine have been very supportive, yet sometimes I feel they get bored of "kidney talk". I am very grateful I am able to post on this site and get helpful replies from good people like yourself. I usually try and stay positive, however this just knocked me for six. I think I just need a couple of days to lick my wounds and then get on with it. Wishing you all the best and thank you.
I think they must do that on every stress test. Makes me so mad. I had no heart problems, went to er, they wrote down chest pain which I didn’t have, ordered a stress test, said it was abnormal, had to do a heart cath! If I refused they would take me off list. Did it, nothing wrong with my heart but it flagged me every step of the way. Luckily I had a good cardiologist, not the dimwit who ordered all the tests, he finally said this is ridiculous, there’s nothing wrong with your heart and he write a letter!!
I know things can look bleak and bring you down. But they can change in an instant. I had a donor who backed out. A friend started a campaign and within 3 months I had 4 people signing up to donate. I got my kidney in feb 2021! DONT GIVE UP! You never know what’s right around the corner😊
I have had several EKGs and just before the treadmill test, I had an echo test. Never had any issues. If im not attending dialysis, i am at work. I havent had any issues apart from kidney ones. It has been really difficult fitting hospital appointments around everything. After reading your reply, I hope the cardiologist, finds nothing wrong. Its my Renal Consultant that thought there was an issue. Thats great news about your transplant. Your friend obviously has the magic touch.!! I hope you are feeling great and loving life. Thank you for replying and your wise words.
I did an echocardiogram instead of the treadmill test….it’s a more accurate. See if you can do that instead. I’m not sure where it is there but I got a letter telling me I was active on the list at such and such date. They said 2 to 2.5 years so I have a wait ahead as it’s only been 2 months.
I don’t get mad or depressed that it looks like no preemptive kidney…shit happens so I just move on to figuring the next steps. I know it’s hard to stay positive so I just stay neutral.
Hi Horsie. Thanks for your reply i actually did an echo a few weeks before the treadmill one. I got told that was OK at the time. I will wait and see what the actual Cardiologist says. I was just having one of those days. Its just another obstacle to conquer, i should be used to them by now!! Thanks again and wishing you all the best.
I think I'd push the issue if it's your renal consultant saying you have a heart issue...he's not a cardiologist. I had the PD cath installed on the 12th and will start soon so I doubt I'll get the preemptive kidney. I hate the "ask strangers" I'm asking anyone, I let them know I'm waiting on a transplant and leave it at that. My brother tried but he's got high blood pressure. My husband is willing but needs to lose some weight...sigh.
I’m so sorry you are going through this! I too am hitting road block after roadblock due to some micronodules on a ct scan and a radiologist who did not compare my current chest ct to the one I had years ago when I was diagnosed with sarcoidosis(an inflammatory immune disorder that can cause granulomas(nodules) in lungs) and failed to look at my health history. She threw the word cancer in the report and my transplant team immediately put me on hold. I realized it was not compared properly and requested the past chest ct be used for comparison. The radiologist saw that all the micronodules that were in my lungs have been stable since 2014 BUT there is a tiny 3mm nodule that looks new and even though it appears to be inflammation/infection they are keeping me on hold until they can do another scan in 6 weeks. Normally a 3mm nodule doesn’t even warrant a follow up but because I had a non-invasive cancer(0% chance of metastasis) years ago they are insisting on this ct even though a matastisized cancer NEVER presents this way but sarcoidosis does. It’s extremely frustrating!! My nephrologist told me the process for getting a kidney tests how badly you really want a transplant and to not give up and do what they say with a smile on my face. This is extremely trying, dehumanizing and depressing and they do not provide any services for emotional support while going through this process. Thank God I have the health unlocked community or I would have lost my mind through all of this.
I have a nephew that has offered his kidney meanwhile and is being tested. He also has young children like your daughter but is insisting to donate. My brother donated to my dad when he was 22 and raised 3 children no problem and is now in his late 70’s living his whole life with one kidney. He even had prostate cancer and the one kidney did not affect his ability to get treatment. Perhaps you should consider your daughter as long as it is not a genetic kidney disease.
Gosh Jamok you have been through a lot. Im glad you are knowledgeable and able to stand up for yourself, like that. So many people just accept what they are told without questioning anything. I will be doing the same, next week. Lots of questions I want answers to, especially after reading some of these replies.I agree about the lack of emotional support. I am quite a private person, so when I did speak to my medical team, I was shocked at the lack of empathy. I decided not to confide in anyone at the hospital again. However i met one nurse, who noticed i was down one day. She was lovely and has restored some of my faith again. I found this site when I was first diagnosed. It has really got me through some tough times too. Its actually my sister, not daughter. Good luck with your nephew. Thank you again for taking the time to reply.
A sister match would be so perfect though. Sometimes the match is so similar you don’t even need anti-rejection meds. If she’s offered and has weighed all the risks perhaps you should reconsider? Did you know that people who are organ donors experience a euphoria that is indescribable and that they tend to live longer than non organ donors? My brother said he would do it over again and again. It’s one of the best things he’s ever done in his life. If it wasn’t for him, I would’ve lost my dad at four years old and I am forever grateful he saved my dad’s life.
I did not know that about a sister match. I was not aware of the "euphoria feeling " You have certainly given me something to think about. I just worry that further down the line, my sisters function might deteriorate through illness etc. I know they test thoroughly but I still couldn't live with it on my conscience. Thanks again for your advice. It is much appreciated x
If her kidneys deteriorate, it would happen if she has one or both just the same. And she gets a leg up and is first in line no waiting list to get a Kidney because she donated. Perhaps she could test and then you go from there. Like I said as long as it’s not hereditary, I would definitely consider it as long as she knows all the risks and makes the decision on her own. I think it would be OK to take it. I know you would do the same for her because I can tell you are very kind.
Oh my, I understand your discouragement. Just look at this as something that can be overcome - a bump in the road. My husband experienced a similar problem. Although he had passed two EKGs, his transplant center requested he get an invasive heart cath. You can imagine our huge letdown when the cardiologist discovered a heart blockage and proceeded to put in a stent. Afterwards, I asked that cardiologist, very upset - Is my hubby simply serving as an ATM machine for the transplant center, getting expensive tests done, finding problems? He quickly reassured me that finding and correcting all heart issues would put him at the top of the list for a transplant - ensuring that his heart health was now great and could handle the stress of a transplant. He had seen this happen. We left thoroughly depressed. But, true story, a little over 3 months later, as soon as he was off the antibiotics for the stent, we got that call. So, in the grand scheme of things, just follow the instructions, and keep your eyes on the prize. The race is yours to win.
Thank you Darlenia for your kind and encouraging words. I know i just have to pick myself up and get on with things. I think i was just blind sided as I thought the meeting was to say they were going to activate me on the list. Now that I have had time to calm down, I realise it is better to get any isdues sorted out before a transplant. I suppose its a bit like taking your driving test, it feels like the end of the world, if you fail 😳😳. I have conquered so many obstacles on this kidney journey, i can cope with a few more. Hope your husband is doing well and wishing you all the best. Thank you.
You expressed that so well - blindsided. That's exactly how we felt too. My hubby is doing great now. And I sense that things will turn out well for you too. Just keep on keeping on - you're a warrior!
lol did I tell you about when I was going through the initial testing and my blood work came back positive for…. Wait for it….cocaine! I don’t use drugs let alone cocaine… I was livid, went to two other labs and had them retest and sure enough no cocaine. Then I made sure they sent the sample OUT of their lab and that one came back clean.
I am speechless 😳😳😳😳😳..would have loved to have seen your face, when you heard that!! You just can't make some of it up, can you. That made me laugh. Thanks Horsie x
sorry you had to go through this. I can relate I did all the heart test but one showed a low heart ejection rate .they call with that info saying they had to put me on the inactive list. Sent me to a heart doctor. I was very upset especially as I was told all test are fine. The heart doctor put me on meds but nobody knew why my ejection faction was so low. In conclusion they figure I had a virus that went to my heart. After a year on the meds my ejection faction came up I did all the test again and was listed as active on transplant list.So now it almost two years being active on transplant list.
Yes it hard to ask people my transplant center had me make a web page asking people for doners. Then later they assigned a coach to and she was very pushy didn’t understand why I don’t have a donor yet. She said that she sent out thousands if email and she put adds out she got a donor. I told her I was hard to match I have high antibodies. Even my daughter didn’t match me. She said well let her do a pair exchange. My daughter did her diet so well she cut out sugar and when she had her glucose test it put her body into shot and her sugar went sky high. They told her she can test again in 6 months . She is just starting her new life with her husband I didn’t want her to do she also has polycystic ovaries so it making her gain weight. I told her to worry about herself.Then when this coach found out other tested for me friends of my daughter and they didn’t match she didn’t understand why they could not do a pair exchange. She wanted me to push them. I said I can not push someone asking for a kidney isn’t asking like asking for a gift of other sort. Some people don’t want to do a pair exchange they only want to give to the one they know. She didn’t understand this because it work for her being so pushy. I told her that not my personality I will put out my page from time to time but I will wait when god is ready for me to get a kidney.
Thanks for your reply Beachgirl.Apart from my kidney issues I have always passed heart scans etc. My echo was fine and I just presumed my treadmill test was just a formality. I was told once I had completed the treadmill test, I would then be put on the transplant list. I did my treadmill test 8 weeks ago, so I just presumed everything was fine. The consultant came to see me, when I was actually hooked up to the dialysis machine. I was totally blind sided by the results and also extremely aware that other patients could hear my conversation. I have googled your diagnoses and wonder if it has been a virus too. I had covid back in March, which lowered my gfr to the point I was advised to go on dialysis. I get the impression, that Thursday was the first time anyone had checked my results. Which makes me wonder how regularly they check test results. I now just have to get myself in the right frame of mind and just get on with it. It does help reading other peoples experiences and realising, it does happen.
I am quite shocked at what you have gone through trying to find a live donor. I live in Scotland and we do not have the same pressure to canvas for a donor (well not that im aware of 😳)..Only a few trusted colleagues are aware i am on dialysis. So to ask work colleagues or complete strangers for one of their vital organs, is unfathomable to me!! It also adds stress and pressure to the patient. Its bad enough struggling with dialysis and work, without having to find a kidney. I would rather just wait on the list (if I get that far) like yourself. I just felt as if I was on the home stretch of a very long marathon....only to be told I have to go back to the start 🙄. I really hope you get the call soon. Thank you so much for sharing your experience. I really appreciate it x
I agree they are on another planet. It’s like going round and round with something new every day but never getting ahead. I feel the same way you do about asking for donors. I totally agree with quality of life and losing everything of myself I had when starting this at home dialysis. It’s such a messed up treatment plan. I’m not feeling it either I’m over it.
Hi LeslieI'm sorry you are feeling the same way too. Its interesting to hear you feel the same way doing home dialysis. I thought it offered more "freedom" and flexibility than haemo. I was starting to think I should have maybe done that. It really is like being on a roller coaster sometimes. I think i totally underestimated the impact dialysis has on your mental health. Some days you just get on with it and deal with the little bumps along the way. Then the next day, you feel as if the world is throwing every obstacle in our way and it just gets too much. Thanks for confirming DRs are on another planet. I just can't get my head around it all. I think the next time they bring it up, i will actually ask them how i go about asking a stranger for one of their kidneys? Do we crack a joke first, ask for their full medical history first. Take them for dinner??? 😤😤😤...i know how difficult it can be but we need to keep going. We have came this far. If you ever need to vent etc feel free to message me. We will get through this my friend.
I don’t have much to add to the other replies you’ve received, except for a response to your previous comment about not being able to travel. You can travel anywhere! The US has hundreds of centers that you can be sent to as a visitor. I go to Florida regularly. International travel is a little trickier but possible as long as there is an available center. Good luck with your journey.
I had a few hiccups with getting on the transplant list at first myself, weirdly my coordinator went on maternity leave too and I got lost in the mix.
I eventually got everything straighten out and I learned a valuable lesson. I make sure to check in every month or two even if it just to say my monthly bloodwork has been sent in to the Sharing Network (transplant list people in NJ) if they want to follow up on it. I find it keeps them on their toes a little more. You must always advocate for yourself. Be the squeaky wheel that gets that kidney!
I'm coming up on my 2 year anniversary of being on the transplant list and I hope and pray every day for my miracle kidney. The idea of just being able to go back to being my normal boring old self seems like a fantasy sometimes.
I hate dialysis, it will be a year in February. I have been so unhappy lately. I've taken a break from doing solo home hemo. I am finding that going to the center is much less stressful and way easier with no machine maintenance at all. I have been literally sleeping through my treatments.
I'm am not sure what I'm ultimately going to end up doing for my treatments. I do know I am tired of the all this too. If you need to rant to someone, hit me up. We can bitch about it together.
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