After 18 long months of trying to get on the list, i got a phoncall on Thursday, telling me I was now live. I thought I would be over the moon, instead I'm feeling overwhelmed. I had an appointment with the transplant co-ordinator and Surgeon about 10 days ago. The surgeon told me I had to lose weight if I wanted the best outcome for a new kidney. I agreed, with what he was saying. I then spoke to the nurse co-ordinator. She explained I would have to be up to date with all health checks, like well woman and dental checks. Unfortunately due to work, dialysis and just not being able to face medical environments on my days off, I have not been up to date on these things. She said she understood but to get them done. Again I agreed. She said I would hear from them once all the paperwork was sorted out. This would probably be in 4-6 weeks. Now I feel blindsided by the speed of everything. I have tried to diet but for some reason my mood has just plunged and all I feel is deep anxiety and worry. Everyone is congratulating me and I really do appreciate how lucky I am. Everyone seems to think once I get a transplant that's it and all I can think of is how unhealthy I am and what if one of my tests come back and something is wrong. I feel like a deer in headlights. I know i could be on the list for months or a few years but what happens if I get a match next week and i have other medical issues that I'm not aware of. I have been trying to book appointments but I'm looking at least 6 weeks. I discussed with my husband and boss the option of asking if I could be taken off the list for a couple of months. I am thinking of my long term health and wanting to give my body the best chance. Their reactions actually scared me. I was told I was mad and being extremely selfish. To the point I couldn't get my views across to them. It has made me scared to approach any professional for advice or help. I am at work, when I am not on dialysis and have never missed a shift in those 18 months. I always put a brave face on for others, even if I'm having a down day or exhausted. Now I feel everything has just caught up with me and I feel mentally and physically exhausted. My husband did say he last night, he would support me no matter what. Now I just feel confused, upset and feel nobody understands. The irony is, I would be exactly the same, before I went live. I would think WTF is wrong with you. Unfortunately I'm not looking at things through rose-tinted glasses. I'm trying to be practical for my long term health. I would appreciate your opinions. Don't hold back, I have had a few home truths directed at me, in the past few days. Thanks for listening.
Transplant list..overwhelmed: After 1... - Kidney Transplant
Transplant list..overwhelmed
Hi friend, its late where i am and i need to get to sleeo but ive saved your post to come back to soon. In the meantime Im sending you a ton of love! 💚
Thank you OperationKidney for taking the time to reply and care ❤️
Absolutely- I know I would have wanted to hear from someone in the same or similar boat when I was getting ready for my transplant.
I do want to mention that I'm in the US so what I say might not quite align with how things work where you are.
There is a lot to unpack in this post, but to start with, you have to do whatever is right for you. Perhaps being on the transplant list would be motivation to get your appointments taken care of. It doesn't usually happen that people find a match that quickly, to be quite honest, and if I'm not mistaken health issues and overdue doctor's appointments can be a reason the transplant team will skip over you.
However, that said you are the one directly dealing with all of this. You have to do what you feel is best for you, whether or not the people around you are happy with that decision.
Thank you for that. I am not so overwhelmed now. Think I was just blindsided by the speed of things. I have now calmed down and started being practical 😁..thanks again for your kind words and wishing you all the best.
Absolutely! I felt much the same way when I first got diagnosed and was told I needed to start dialysis and get a transplant. Its a lot to take in so being overwhelmed is definitely understandable.
This is a man talking to you. Be selfish. Women have a desire to sacrifice to their own determent. A man would not even take a second look. He would set priorities as to what needs to happen first and do it. He is going to make those dental and medical appointments. He is going to take time to exercise and think about his diet and he is not going to let others infringe on that time. As a man, I can honestly say we are selfish and self centered. With that said, we too worry and worry does not help you physically . Stress is never a good thing when it is out of control. Find a release. Think about what makes you happy and do it. And 2 last things. Nobody is truly ready when they get the call and a transplant does not solve all your health problems. It is only a treatment and that treatment requires rejection medication and a life of immune suppression. You have been and will be on a journey of emotional and physical ups and downs. But it is a journey you can handle. Find your support team. It may be people you know now, but it may be people you are yet to meet. Ask questions and attend workshops. The more you know about the journey, the less stress you will feel. We all care and want the best for you.
Thank you for taking the time to reply Eyak. I have always put others first, sometimes to the sacrifice of my own health and wellbeing. I actually said to my husband, for once I'm putting myself first. In fact I didn't even have to discuss it with anyone, except my transplant team. I.was just being stubborn but deep down I do just want to take a selfish attitude and do this one thing for ME. My life is like groundhog day. Go to work, go to dialysis, one day off catch up on chores etc and repeat. I don't want to come off the transplant list, I really just want a bit of breathing space. I want a transplant more than anything but right now, I see it as competing in a marathon and I am out of shape and done no preparation for it 😳😳..After having a few days to think things out in my head, I realise it's just another furball on this journey. I have came this far, I know I can do this. Thank you so much for replying. Your calmness and methodical thinking has been so welcome. Thank you so much .
Take care.
Not a furball a curve ball 🤣🤣🤣🤣🤣..think I have definitely lost the plot!!
I think you are being to harsh with yourself, I'm 6 years post transplant and in my time waiting for my kidney function to reduce (6 year) for my live donar transplant I was never asked any of the questions you have been asked well maybe Dental, I was over weight ( 3 stone ) and none of the coordinators or Consultants mention for me to loose weigh, your on the list that's Brill, start from today and do the best you can, it may take weeks months before you get a Donor so start today one step at a time.
Hi Strew. Thanks for replying. I have completed all my heart tests etc and apart from one, I passed them all. One flagged up an issue with my heart, think it was the treadmill one. After waiting 6 months I was retested and turns out there was nothing wrong. I think I was just shocked by people's reactions. I thought I was being sensible wanting to get tested before going live. I was genuinely shocked at how angry people were with me. I am now going to write a list of questions and email it to my transplant co-ordinator. My husband has even started eating healthily to help with the weight loss. I think everyone's emotions were high. I hope you are doing well and please know how important your reply is to me.
Hey Ziggy, I don't know how your transplant center works (they all seem to have their quirks), but where I went (the University of Washington in Seattle) I had to have ALL the "qualifying" exams done before I could even meet with the transplant team. That took me approximately 6 months to complete. I don't remember all the tests, but some were an EKG, a "KUB" CT scan to look at my kidneys, ureters, and bladder, and a cardio stress test, which had to be done in two sessions because of my weight at the time; I've since lost about 60 pounds. I had to have proof of a recent mammogram (which I had chosen not to do anymore for personal reasons, but it was get it done or don't continue the evaluation process) and proof of up-to-date dental care. There were undoubtedly more, but these are the ones I can remember off the top of my head.
I was never on dialysis so maybe the requirements are different. It may have been considered somewhat of an elective surgery in my case because of not being on dialysis, even thought my eGFR was 16. I don't know; I'm speculating. I had to take time off work to get some of the tests done and my company wasn't thrilled about it, but I had sick leave built up so there really wasn't anything they could say about it.
I guess it comes down to what you want. Do you want to be on dialysis and all that entails for the rest of your life? Or do you want the chance of a potentially better life? You will still have some issues to deal with; remember a transplant is NOT A CURE. It is a treatment and arguably the best one available. But I still deal with a host of issues on a daily basis. However, dialysis was never an option in my way of thinking. I had seen first hand what it can do to a person and wanted no part of it. If the kidney I was given should fail, I still don't plan to do dialysis. I figure I'm already living on borrowed time and I am grateful for it. But when it's up, I know I'll be going home to Jesus and honestly, I'm excited to see Him face to face!
I wish you all the best as you weigh your options and sort out what you want to do. It's a very personal decision and not an easy one to make. Talk to your transplant coordinator and make sure you get ALL your questions answered. Once you make your decision, don't second guess yourself. Best wishes!
Hi Blue-Quilter, thanks so much for your lovely reply. I have had all my heart scans etc done, so those boxes are ticked. I was just under the impression, I wouldn't go live until these other health checks had been done. I think I was blindsided. It is a bit like going on a last minute holiday and you have forgotten a few essential items 🤯🤯.. Iam more than aware that a transplant us not a cure. I have seen that first hand with some of my fellow dialysis patients, who recieved the call. Nothing on this journey is straightforward. Congratulations with the weight loss. I certainly do not want to be on dialysis for life. I was only looking to be removed temporarily until I got everything sorted. I'm curious why you would not consider dialysis? I was determined not to go on it, however its not been as bad as I imagined. Yes it's the last thing you want to be doing. We had a woman in her 70s attend. She sat shaking for the first two months. Complained she wanted to go home and die. Now she drives herself in. Dresses in bright colours and chats to everyone. You wouldn't believe it's the same person!! I wish you well on your journey and thank you again for your kind words. It's mean a lot xx
Breathe. Try to relax before deciding what you're going to do. You sound weary physically and mentally. If you can catch your breathe, it may be easier to decide what you want to-do. You sound as if you have a very busy life and now become overwhelmed thinking what else you have to add to your plate. But, one step at a time. For example, one appointment a week/month. One less snack between meals. One meeting or call with your care team. Take it slow. Rest. You got this.
Ypu are the kind of person I need , when I'm having one of these days drmind 😁..You have just summed up my predicament perfectly. Now that I have had time to calm down and read these amazing replies, I realise it's just one more curveball on this kidney journey.I have crossed so many hurdles on this journey, I can do it again. I will be making a list of questions and sending it to my transplant team. I will also be adopting your planner suggestions. Thank you so much for replying. It means a lot.
one step at a time. All you can do is try. BTW no one loses weight fast [except men], so don't be discourage if you don't start dropping pounds right away. For all of it, its the trying that you have to pay attention to. If the care team asks if you lost any weight, just tell them I'm trying and tell them how you are. Goodness, I've been losing those last 5 pounds for around twenty years now. Take care and just do what you can not and no one can fault you with that. Others may have high expectations for you, but that's them and there's you. Listen, if you want to earn warrior status, you have to keep pushing ahead, but at your own speed.
Thank you again. Struggling with the healthy eating right now. Just feel as if I have gone slightly into comfort eating mode. I am walking the dog more and making small changes so it's definitely small steps!!
Sounds good. Most of us struggle with healthy eating. When I fall off a good diet, it takes a week or two to get back, but I do. My dream wish is to have a fairy Godmother come in and cook up different, delicious veggies casseroles and soups every week. Hope you can keep doing what you're doing and feel less stressed.
Yes; take some time to really process all of this. It is a lot...as you are going through this process it is all overwhelming especially when you don't feel good anyway and you are trying to manage a life. It will all fall into place; but you need to decide that your health is your number one priority. Because honestly it is.....Those of us who have had a transplant realize after what 'feeling normal' is like...I would like to say quit your job; but I know that is dramatic; but in the end your health is most important for you and your family.
One step at a time.
Thank you. Wise words and ones I needed to hear x
Thank you so much all your replies. I didn't realise anyone had replied until I went for my lunch (Scotland based) ..I have to admit, I was close to crying my eyes out reading these 😭😭😭. I will reply to them when I get home from work. Thank you for taking the time to reply xx
First take a deep breath and exhale. Focus on one thing at a time. When you make appointments let them know your doing this for a new kidney so time is of the essence. You got this and you can do this! I know it can be overwhelming so break it down to small lists. Check things off as you go. Don't put this off and maybe see if you can go on disability. Your suppose to get it for 1 year after your transplant anyways. Sounds like your husband is a wonderful support and lean on him amd let him help in any way he can. You got this and your stronger then you think! Hugs
Aww thank you Linda. You are so right. I now realise I was overwhelmed with everything. Your sensible approach is just what I am needing. I have looked into benefits and it seems I'm not entitled to anything, which is very frustrating. It would be nice to have a bit if a safety net, when work gets too much. My husband has been very supportive. I think emotions were just very high, when I brought this up and neither of us, we're prepared for each others reaction. We are now doing healthy eating together and we will do it. I hope you are doing well and thank you for your kind and practical words x
First Breathe it can be exciting and overwhelming with all the test just do what you can. I know I past all my transplant center test the first time . My is always wanting test the second set there was one I don’t pass but they just made me inactive while I work on it. But I stay my place on the waitlist. A couple of hospitals visits they made me inactive again but kept my place on the waitlist . So I would have the test they tell you they put you on waitlist so your weight must of been ok. If your weight goes up during another phase of testing maybe they will just make you inactive . In the long run you have to do what best for you not anyone else but for you wishing you luck and blessings on your journey .
Yes it was explained to me, that as soon as I started dialysis this time would be added to the transplant list. I was really just looking for a bit of breathing space to get my other tests done. I had visions of getting the call and not knowing if I had other issues. Which might be made worse due to the transplant drugs. I am now seeing things a lot clearer thanks to people like yourself who have taken the time to reply. I Hooe everything goes well for you Beachgirl and blessings to you too xx
First and foremost know that what you are feeling is normal. We have all experienced this at some level. Each of us have had our drs, surgeons and/or nurses tell us everything we need to have done, all of us at different levels. Ultimately what you need to realize at this point is that you have been placed on the list, approved, as is. Everything you’ve done to this point has proven to be healthy enough to receive a transplant..
We all could lose weight, we all need to stay up to date with our physicals and/or we’ll woman exams but you’ve been approved as is. If they were to call you tomorrow, you would be ready.
I was blessed and received a call for my transplant 9 days after being placed on the list… 9 days unheard of. I was overwhelmed. I cried, called all my family on the way to the hospital and kept saying I’m not ready.
Today, 5 years later, I was ready! This is a very physically and emotionally exhausting disease. And after the transplant the need for more appointments and follows up continue, but you will prevail. Stay strong, breathe and accept that you are worthy of this blessing!!!
I read your reply Monica and I thought yes. You have described exactly how I feel. You actually made me laugh, at how you felt when you got the call...I'm not ready!!! This is ME 🤪🤪🤪!!! I'm so glad everything went well. Again you are so right..this IS a physically and emotionally draining disease. I think I just felt overwhelmed and totally unprepared. Thank you so much for your reassuring words. It means a lot. Thank you xx
I felt the same way last year when I was made active! I had an overwhelming sense of ‘I’m not ready physically, emotionally, or mentally.’ When I should have been excited and happy, I was anxious and afraid about the whole transplant process. I was in flight or fight mode and I wanted to avoid the whole thing all together! Every time the phone would ring I would get an adrenaline rush and a sick feeling in my stomach. I was actually relieved when the two offers I got were not viable! But when they put me on hold for a steroid allergy and then a tiny lung nodule, I started getting my fight back. I visualized my situation as if I was walking down a dead end hallway with two exits, if I continued straight, I would hit the END(death)not an option for me, if I turned to the left-dialysis, to the right a transplant. This helped me to understand and accept the reality of my situation. It empowered me to face transplant without fear, well, without as much fear, knowing that this was the choice I was making that was going to be the best treatment for LIVING despite having kidney disease so when I was activated again, I felt a sense of peace and acceptance that over rode the anxiety producing “What if…?” thoughts. Five days later, a few hours before I got the call, I had an overwhelming sense of joy come over me and I knew everything was going to work out. One other thing, and I’m not sure if you’re spiritual, but during this time, my faith and trust in God and his timing rose to a new level. The fact that I got a call five days after being activated, and that my Kdpi 19 perfect little kidney bean came from a nine year old and I was 60 is a miracle! And I truly believe your miracle is coming too! I like little Linda’s advice. Take it one step at a time.
Thank you so much Jamok. This describes my situation perfectly. It is so reassuring to know I am not the only one that has felt this way. I think the target has always been to get on the transplant list. My response to actually being on it, was not the one I expected. I had everyone congratulating me but deep down I felt like a deer in headlights. Now I have calmed down a bit and reading these replies has helped so much. That is amazing...a nine year old??? I did not realise that was even possible. I will be taking Linda's advice and the advice of others who have replied. I wish you and little bean all the best. Your words are very comforting. Thank you xx
I understand how you feel..I have been on PD for almost 3 years...and I am quite happy with it...my Doctors keep asking me if I want to try for transplant and I really dont...My Life is good and PD at night on my cylcler keeps me feeling good and takes very little management, but I know my body will eventually wear out and if I thought the kidney troubles would l cease with a transplant I would do one...but I know it won't and I worry I won't feel as good as I do now on PD.. I am also 65 and I might feel different if I was younger....whatever you decide to do, remember it is YOUR decision and once you decide what to do, you will find a way to do it...
Thank you for your kind words RhenDutchess. I was only temporarily wanting to come off the list. I think I just became overwhelmed by everything. I am now starting to see things clearer. Is it you that refers to your PD machine as your beauty box? I think you replied to one of my previous posts? You made me laugh with your upbeat and vivacious attitude. You were quite inspiring 😁😁. Thank you again for your reply. Xx
I suspect the timeline isn't set in stone. There are defined steps to it. Essentially, my hubby had a consult with the nearby transplant center. Like you, he passed the interview and was given the greenlight to proceed with updating his medical tests and records - he needed an up-to-date EKG, a colonoscopy, extensive blood labs, a dental exam, etc. The center told him to get all of that into the center within three months. If he couldn't get some of them done in that time frame, he was to let the center know. The gastroenterologists were all booked up for months so it took a while to get the colonoscopy out of the way. Anyway, one at a time, he completed the tests and had records or copies sent to the transplant center. After his "file" at the center was complete, it was forwarded to the transplant panel for review and a vote on whether or not he qualified to be on the "official transplant list" - this is the big one when they will start looking for a kidney for you. Nothing happens before then. We were told, that this final step could take 4 to 6 weeks since the panel only meet monthly.
Early in the process we were really stressed too. But as my hubby completed the tests one at a time, nerves settled down. We stayed in touch with the coordinator in charge of his "file", and updated her as needed. I think the person in charge of your case, wasn't clear about the timeline. In my opinion, it's virtually impossible to get all tests done immediately, certainly not weeks, which may include losing a little weight in your case. Usually 4 to 6 weeks is needed to hear back from the center's transplant panel after your file is complete, it's reviewed, and the final decision is made. Although this is the way it's done in the US, I suspect things are similar in Europe. Maybe call the coordinator in charge of records at your transplant center and ask her to clarify. Asking questions is good! It shows you have an interest in things. You don't have to worry at all about getting offers and so on until the final decision is made. The entire process is like an important job interview...multiple steps involved, dropping out is fine at any step. But, you have gotten the green light to proceed! And that's awesome.
Hi Darlenia.. Yes I am starting to question the timelines and criteria, they have told me. I think a few boxes have been ticked prematurely. Im based in Scotland and I was under the impression all these tests had to be completed before going on the list. Now that I have calmed down, I will be making a list of questions and emailing the co-ordinator. Sometimes you just don't ask the right questions when you are meeting your medical team. It's only later, when you start to realise you don't know all the answers!! IIt is awesome and I am very grateful. I hope everything is well with your husband. You must be a great support to him. Take care and thank you xx
You're doing beautifully. Asking questions is a nice way to settle those nerves. I think you're in a very nice place with that request asking you for more medical information. So many aren't even invited to take those next steps. Warrior on! One step at a time!
There is a status where you are accruing time on the list but you ask them not to begin offering you transplants yet. I was on that status for 10 years while I stuggled with End Stage KIdney Disease. When I finally knew it was time to go for it (my eGFR was down to 7), I was right at the top of the list because of all the time I had accrued so they started offering me kidneys right away. I am in my 6th month post transplant and so far everything seems to be working out. My eGFR is consistently in the 80's now.
Your eGFR is consistently in the 80s...wow that is absolutely amazing!! I didn't realise it would go that high!! Especially at 6 months. One of my fellow patients, got a kidney from her husband 6 months ago. She will find out next week what her GFR is. Yes I was told I was accruing time from the minute I started dialysis. I really hope everything continues to workout. Your post has been very inspiring. Thank you modernmusic x
Actually in the first 3 months after the surgery I actually had two weeks of 91 and 90 eGFR's. And, BTW, I'm 77 years old.
Wow that is amazing 👏👏👏
Anyway- my message is that you have plenty of opportunities to change your mind once you get on the list. I got on the list and from the beginning told them that I wasn't ready to move forward yet but to keep counting my time. Ten years later, when I finally had to activate I still had plenty of choices. They started by offering my 50 year old kidneys. Since I had still never gone on dialysis I was advised that I should hold out for a really good kidney. So, I turned down quite a few of the first kidneys they offered. I started to get worried when some jerk who called me to offer an unacceptable kidney told that if I didn't accept one soon. I checked with several others in the department and was told several times that that guy was way out of line and they would keep offering me kidneys until I found one that I was comfortable accepting. That all turned out to be true. I would advise getting all your tests etc. out of the way, get on the list and and then just wait until you feel like you are ready. With everything else taken care of ahead of time, you will be able to move pretty quickly when you know it's time.
Thank you modernmusic. This is what I was hoping to hear. Well done for standing firm in your decision making. Your last paragraph is exactly the way I am feeling. Get all the boxes ticked, then I will be delighted to wait for for a call. I just need peace of mind. Thank you
I understand it's overwhelming, but going "off the list" isn't going to anything to help your long term health. The testing must be done for a transplant no matter what, so why put it off? My advice is to acknowledge your fear, and walk into it. Seek support along the way, but don't put something so important off. The testing alone took me months and months - it's not like you're going to get a call tomorrow without all the testing done. In fact, I'm surprised they listed you without it done. But my personal opinion is that there is no logical reason to put everything off. Just my two cents, for what it's worth.
Agree. Wonder if this particular coordinator was referring to an "internal list" of potential candidates for the "official list". I suspect regulatory agencies would discipline a center transplanting a patient without all the tests done.
Hi Weetziegirl. I wasn't wanting to be taken off permanently. I just wanted a bit of breathing space, so I could get the test done and know the results. My fear was suddenly getting a call (,I know realistically, this would not happen so quickly) and not knowing if I was healthy in other areas. I think I just panicked thinking of the drug after the transplant. Thank you for your reply. I know you are right. Its onwards and upwards x
I think your worries that you wrote above belong to your doctors and nurses! Those are their job and not patient's responsibilities. You definitely don't need to worry for them, just keep up the tasks they ask of you the best you can, and stay firmly where they want you on the list. Best wishes for a fast call for the actual transplant!
Thank you so much Lisa. Yes you are right. However in my experience, sometimes the medical staff aren't on the ball sometimes. I'm sure the transplant team will be different. Yip starting to tick some boxes. Thank you for your encouraging words x
Thank you so much to everyone that has taken the time to reply. I think I was just mentally and physically drained with everything. To the point I was almost like a headless chicken. Now that I have had time to think about things, I now feel more positive and proactive. I can't tell you how lovely it was to read all your replies and wonderful advice. I was feeling quite down and lonely.I first discovered Healthunlocked 8 years ago. It was the day after i had met my consultant. I sat looking at the carrier bag filled to the brim of drugs. I remember sitting crying my eyes out for the next few hours. I then googled kidney disease and found this site. I started to realise I was not alone on this journey. I spent the next few months reading all the posts I could. I double checked everything my medical team told me, with posts on this site. I always find it more beneficial to read about the experiences of people who are actually going through this. We might be strangers but you are all my kidney family and I am blessed to have you in my life. Thank you xxx
Hi. My thoughts are with you as well as my prayers. I was told in Jan of 2020 that I was removed from the active list for a transplant because of my weight. I needed to lose 36-46 lbs before being put back I. I started walking which was not easy. I did lose the weight and had a transplant Nov 23, 2020. It was hard but I had to do it by myself. I had a live transplant. Please know people care about you and I have faith you can do if.
Thank you for your very kind words and even more inspiring post!! I have started walking the dog more...4 times rather than 3 daily. Getting the healthy eating started is more challenging. However as others have said..small steps. I will get there and thank you for taking the time to reply xx
It’s hard and no one understands but your fellow kidney warriors! These mixed feeling are totally normal. That said, I was so excited when I got on the list I texted a lot of people. I was walking on air pumped up for like about a week. Then I remembered they has still said 3-4 years. I was listed April 28th. Got transplanted June 11!!! It so does pay to be on the list, if you want, it gives you so much hope to have an alternative to dialysis someday, in the future. That said, they really aren’t for everyone. The transplant drugs are rough. They increase your risks of cancer and sometimes will damage your kidney themselves! Right now I’m in the hospital where I’ve been for 3 days because of one of my doctors decided to switch my meds and drove my white count down to 1.06 which is a medical emergency. Yes. You need your immune system suppressed but not by that much.
Transplant is a treatment not a cure, and it’s really like getting another serious disease.
I went to one transplant center that wasn’t too far away and the doctor suggesting ”losing a little weight.” Wow I’ve never even tried that! I love being obese. I quit the evaluation process right then at that hospital.
Yeah this is what I'm afraid of..suddenly getting the call after a short period of time on the list!! Don't get me wrong if all my heakth checklists were ticked, I would be like..yesssss let's do this. I definitely aware it is not a cure, I have seen what other transplanted patients have gone through..I keep in touch with them. This dilemma has actually highlighted the fact that I think family, friends and work all think after a few weeks I will be back to normal? So I have had to address this. I really hope everything works out for you and thank you!
Bless you Ziggy you are going through a journey many of us have been through. Lack of visible symptoms leads to an unsympathetic response. Take control. It sounds as if you are British so nhs. I was on the list for three years so plenty of time. Set realistic targets for weight loss.
Don’t look for pity it cures nothing. Just do your best and wait for that call. The co- ordinator cannot take you off a list. Just keep them sweet.
I had 20 years of ckd,three years of difficult dialysis then a transplant that gave me my life back three years ago.
It will all come good.
Good luck
Sean
Thank you for your kind words Sean! It is always good to hear about everyone's experiences. I hope it wasn't sounding like I was looking for pity 😁..think I just got really overwhelmed with everything. I'm glad you are doing well and thank you for being so reassuring. All the best my friend
Hi Ziggy. Wrong word sorry. You are starting on a difficult journey. Once it settles down you will cope very well. It’s all a bit of a whirlwind at the start. Good luck 👍🏼
I know you have a lot of responses to go through and that can be stressful in it's self alone, with all that you have on your plate.I am in the US. The process to get my Husband on the list had me in tears some days. Some days, it seemed like the tasks that had to be completed, were like another brick being added on a pile that was already smothering me. I beg you-- Please please do not take yourself off the list!!! Think of all the work you have done thus far!!The worst that can happen is that they call you and you are not ready. But...you are still on the list. You do have to show that you are making honest efforts to fulfill the requirements, but just think of one at a time. Don't let your body, your mind, your life to suffer anymore damage. Do they offer support counseling or something? Call them. Find other people in your health system, who have been through it, they know what you're going through. It is NOT EASY. Please consider your mental health as well as the physical as they go hand in hand. This seems demanding of me, but I can tell you are in a terrible state of mind.This is not meant to guilt you at all, but thank goodness you have a supportive Husband. He obviously loves you which means he doesn't want to lose you.I'm not saying you have to put yourself through a personal h*ll for him,it is your choice. I wish you all the best.
Thank you for your kind reply. I am so sorry it has taken a while to respond. I am still on the transplant list. It was never my intention, to come off it. I just wanted to inactive on it, till maybe Christmas. I am a lot calmer than I was, still have days when everything is overwhelming. The pile of bricks was a great description. I have booked time off in November and I am scheduling all my appointments around thenI have also contacted the transplant co-ordinator asking for advice. Have to admit I was not left reassured by her reply.
As with everything on this journey, the mantra seems to be..just get on with it. Yes we have bad days but we have to force ourselves through them.
Thanks so much for taking the time to reach out to me. I needed someone like you when I was having my freak out. You have given me sensible but sympathetic advice. I am very touched thank you x
Oh also, if it’s not clear, you can pass on any kindness offered to you and not lose your place in line. And if you’re not healthy, they’re not going to transplant you anyway! They will make you inactive on the list. When they found some cancer cells in me, my transplant coordinator told me she was not kicking me off the list so I could still build up time, but I had to realize she wouldn’t let me have a kidney if it came up, until it was resolved. Fortunately I did not have cancer, it was just malignant cells.
The hospitals are on the hook if your kidney fails. It’s in their yearly statistics that everyone can see. I mean yes, rejection can happen and it’s not anyone’s fault. It still reflects poorly on them. They want a good outcome.
I strongly suggest talking to your transplant coordinator to get a sense of how things are going, keeping in mind whatever you say will go into your record. I got to know mine a bit. She was fabulous. She would even tell me where I was on the list - one week I was # 60 on the list there at that hospital. She’d spend 20 minutes with me, talking about the process of how it works. For example they almost always know when they’re going to get the kidney long before the machines are turned off. You usually have at least 6 hours to get there. They take where you live into account before offering the kidney to you. Once in while it is a sudden death and they might need you to get there in 2 hours.
Most people just get on the list and sit there, doing nothing.
I was called at 7:15 in the morning and they gave me until 3 pm to get there. I got a plane flight immediately and they wanted me to text when I got to the airport etc. Once I was there I went into pre-op and they warned me, I might be going home without a kidney. I told them I knew that. When the kidney arrives the surgeon has to look it over and be sure it’s still undamaged. They might do a blood cross-match etc.
I called my coordinator after I got my transplant somewhere else. She said she’s been doing it for 20 years, and probably only 5 people have called her post transplant to thank her. She said she was happy to see when my name came on the list from UNOS that I’d been transplanted someplace else. Remember they want you to succeed. I then asked her if I could somehow be of help to them. Turns out they run a bunch of programs and need post transplants patient to talk to medical students about what the experience is like, etc.
I made a friend at the dialysis center. His daughter wanted to give him her kidney and he said no because he didn’t want her to have any health consequences down the road. This floored because I had been begging my family to donate and they all refused. He had been doing dialysis for 10 years and didn’t even want a transplant anymore.
Bottom line is - there really are no hard and fast rules. It’s a very very personal thing. I’m glad your husband will support you.
If you need to, get some short term counseling to talk your feelings over with someone who is objective. It will be confidential - just do NOT talk to a social worker at your transplant center. Then it’s likely not going to be confidential and will go in your file. You & your transplant journey are no one else’s business.
People who don’t have kidney failure are going to think there’s something wrong with you if you don’t want one. They don’t get how complex the process is and there are real risks to getting a transplant. On the other hand my sister was like, Why want it so badly if you can just have dialysis and live that way?Ummm…
Ambivalence is “normal” even though I hate the word normal. My advice is stop talking to outside people about it like your boss, friends etc. They don’t get it. Don’t start asking different people’s opinions it can drive you up the wall and I don’t think it will help you.
Thank you do much for your reply. I can only apologise for not replying sooner.Your reply was of great interest to me as I am struggling a bit with getting my head around things. I emailed my transplant co-ordinator nurse. I was very honest and explained exactly how I was feeling. She replied with a long email.
She explained its understandable, that I'm feeling the way I do etc. I had queried the fact I still had to get dental appointments and well woman checks done. As one of my fellow dialysis patients had a transplant after only 3 weeks on the list. I was a bit like a dear in headlights. She told me the fact that I hadn't had these checks, did not mean I would be rejected for a transplant? If a kidney came up, they would be happy.for me to accept it? I can't get my head around this? Other patients have been told, they have to get dental work done before going on the list?? Your experience with your suspicious cells, is what my fear and reluctance is about. The bottom line is, I am now being proactive and slowly dealing with things. It is still a struggle but I'm gettig there. I can't believe only 5 people thanked the co-ordinator. I know the ones that have helped me on this difficult journey. I will make sure they know how appreciated they are. So many in this site have helped too. Yourself included. I read your reply and was nodding my head 😁😁😁..I have learnt my lesson regarding discussing my concerns with my boss etc. Although she told me, she discussed it with her husband and he actually agreed with me. She eventually understood where I was coming from!! I hope you are well and enjoying life. I really appreciate you taking the time to reply to me. It means a lot and I really appreciate it x
While on dialysis, sometimes I would just sit and cry for 3-15 min. My husband would ask what was wrong, and I would say "let me feel sorry for myself for 5 minutes". Let yourself have a cry if you need one - don't feel bad about it, and don't make excuses for it. I spent almost 2 years where my life was work, exercise, dialysis and cooking. Nothing else. I had no hobbies. I had nothing to talk to my friends about. I became totally boring. It was seriously depressing. (not clinically depressed, though), and my husband couldn't understand.
My suggestion is to not focus on losing weight but rather gaining muscle and increasing lung/heart capacity to better survive your surgery. While waiting for my transplant, I went from walking one mile/day to 3 miles/day in 45 minutes every day - rain or shine. I lost about 20 lbs. The outdoor exercise will also help you feel better, sleep better, and therefore communicate and think better.
If you can't get outside to exercise, I love Petra Genco's walking workouts on YouTube. I also like shadow boxing and my Total Gym. 
I also reduced my work schedule to 6 hr days for about 6 months before my transplant. Consider asking your boss about a reduced schedule, if you can afford it. that might help.
Baby Tee your first paragraph sums up the way I feel sometimes 😳😳😳😳..I actually sat the other week, trying to force myself to cry as I just felt I would get immense relief from it!! Inside I just want to cry.but sometimes I think if I actually start I will never stop. My life is on a constant loop. I could tell you exactly what I was doing Sept 2022. My week is like Groundhog day. It isn't a depression, it's monotonous. I have started taking small steps with healthy eating and exercise. I have realised since my original post, you need to chip away at things. I was just overwhelmed and tired. I hope you are well and thank you so much for your understanding. And you coping well after your transplant ? X
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