Should I take my mothers kidney - warning quite long!

[romanyscarlett]

I'm 25 years old with Polycystic Kidney Disease. There is no history of it my family and my illness is the result of a "genetic mutation" so my mother has perfectly healthy kidneys.

My mother has had all the tests done and it seems she is a good match to be a donor. However, I'm not at all keen on taking her kidney. I've got so many reasons and for me the negatives outweigh the positives. She has 3 markers in common with me. According the transplant nurse I spoke to today, if I had a cadaverous donor there is a good chance it would have 4 or 5 markers in common.

Firstly, we keep getting told that donating a kidney is a relatively "easy" operation which can be done through keyhole surgery and the donor can be up and about after a few days. However, a few years ago my mother had a hysterectomy and at the time we were told it was a routine operation that had been done thousands of times before with very little chance of going wrong. But it did go wrong and there were a lot of complications which involved my mother being ill for a long time and having to go in and out of hospital. I can't help thinking that she might be prone to simple things going wrong.

Secondly, our family is very small. I am not in contact with my father, I have no siblings, all my grandparents are dead and my relationship with my step-father is terrible. The only family I have is my mother, my uncle and my boyfriend. I realise I am blessed to have them and that some people have no-one so I'm thankful for them every day. My mother and uncle had a terrible upbringing after both their parents died while they were young. The result of this is my uncle relies on my mother more than the average brother/sister relationship. He has just been diagnosed with emphysema and he is a recovering alcoholic. He lives alone, does not have many friends and he cannot drive. He currently cycles everywhere but this will soon have to stop as his lungs can't take it. He is going to need a lot of support and help getting to hospital appointments and my mother won't be able to drive him if she's donated a kidney to me. Also, if something were to happen to my mother, I have no doubts he would commit suicide.

Thirdly, I live in England where the average waiting time for a kidney is 2 years. I've only just started dialysis and right now 2 years does not sound too long. Perhaps this is a foolish thought and I'll think differently in a few months times. I was told that because of my age, I'd be a priority so I probably wouldn't have to wait the whole 2 years anyway. I do know that the waiting time average is just a statistic and that its not a guarantee. I appreciate I could end up waiting 10 years on the transplant list. I spoke to the transplant nurse about how old my mother would have to be before she would be too old to donate and I was told it would 5 more years before they would think twice about doing it.

Fourthly, not to be too pessimistic but everything that can go wrong with my health has done just that - go wrong! When I was diagnosed with PKD I was told that the average patient starts to go into kidney failure in their 40s and ends up on dialysis in their 60s yet here I am at 25 with no renal function. I have had a terrible run of bad luck over the past few years not just with my kidneys and I've got it into my head that any kidney I get is going to reject. For this reason alone I'd rather have a cadaverous donor go wrong and then have my mothers as a back up.

My instinct is to see how things go on the national donor list and if it gets to a point where I can't cope anymore then I know I can ask my mother for her kidney. It's all so confusing though. My mother is very keen to donate as she hates seeing me ill and wants me to be well again. She says it's not right for a 25 year old to be so sick and I should just take her kidney now so I can get back to normal. I see her point but I was feeling so rough before I started dialysis and now I'm starting to feel a lot better since having treatment. I think I could stick it out until a cadaverous donor comes along so she doesn't need to go through an unnecessary operation and she will also be in top health to look after me as I recover rather than us both being sick.

The thought of us both recovering at the same time terrifies me. My step-father works away from home during the week and is only home at weekends so we would be relying on my boyfriend to look after us. He can barely look after himself and we'd be lucky if we lasted a day without getting food poisoning or the house burning down 

Can anyone who has taken a donation from a relative or anyone who has turned one down please tell me how you came to your decision? I feel like I'm going round in circles at the moment and I'm getting dizzy.

[Riki]

I have a question.. Why woudln't your mother be able to drive after donating?  the removal of a kidney doesn't affect your eyesight or motor skills.

I've never had anyone offer to give me a kidney.  My parents are not matches, and the rest of my family are cowards (yeah, I'm bitter).  That saying, my opinion would be, do dialysis for a few months until you're feeling better.  Then, take the kidney from your mom.  There really isn't anything to it. She'll barely have a scar.  You should do it while you're still young and relatively healthy.  If you wait too long, your body may not be able to handle the surgery.

[boswife]

Wow, you do have a lot to think about and i hope ya get lots of response to help ya out. A lady in our unit just had a wonderfuly easy surgury that was "robot assisted" (i believe the first in US??) and the recovery time for the doner was 2 days    and our "patients" recovery time was cut in half.  I still say ya got a lot of thinken and hopfully, your gonna get all straghtned out here with a little help from your friends on IHD 

[RichardMEL]

Rommany I can't really answer your question because I'm not in your situation, but I can empathise with some of the issues you're dealing with and it can be very difficult. In my situation I was looking at my sister donating, and I had this real issue of feeling responsibility for anything that would then happen to her that could be linked to her donating. Even though my brain understood that it was her decision knowing the risk and she WANTED to, my heart was feeling quite heavy at the thought of taking from her and potentially making her life worse down the track - I couldn't bear that. I was actually quite relieved when she was denied to donate because of her blood pressure - it took the decision from me - I am not sure what I would have done if they'd OK'd her and it was basically down to me.

Right now my brother is testing(very slowly) and I sort of face the same situation. I am not set on how I feel still and quite torn in a way. I mean is it ungreatful to say NO to such a beautiful gift? Is that worse than being responsible if something bad happens later? I don't know!

Just on the UK waiting list. Not trying to skew your decision, but there was a young lady in our unit a few years ago. She was 35 and she needed a kidney and pancreas. Her parents were in the UK. She waited with us for a few years for a transplant, but just wasn't getting anywhere and was getting desperate. Given her parents were in the UK (they flew out every so often to see her, and were lovely supportive people) she decided to go to the UK to wait there - apparently it was supposed to be a six month wait for a K/P transplant and she thought she could be done and back in a year rather than waiting around here. Well she got there and through sporadic updates we got they took time testing her and OK'ing her for the list, when they finally did it tookmore than six months. Indeed she passed away suddenly one morning while dressing, well over a year after being on the list there. So very sad.

My point perhaps is that a living donation is ALWAYS preferred over a cadaveric one. My neph has said several times that these days the actual matches, eg: 0/6, 2/6 etc are not so important in terms of the transplant's survivial and when they can manage it via a live transplant the prospects are very good. If your mother (or my brother, for me) WANTS to donate, and is OK to do so, it might well be good to take that now rather than waiting for goodness knows how long.

In the end though whatever you decide YOU have to be 100% comfortable with it. I am convinced that attitude has a big factor in these things, and if you're not comfortable with what you're doing that could have a negative effect on you.

best of luck with your decision - I can only imagine from my own experiences how difficult t is for you and the many conflicting emotions are tearing you around about this.

 

[natnnnat]

If you can write long posts maybe you can handle them in reply
hope so.  Thought these papers might be relevant.
In a way though, they kind of say what you have already said. 
Though they tend to all say, the outcomes for the donors were good. 
I saw another one once I think, about how people felt after one family member donated to another and the transplant failed.  I wish I could find it.
x
n

Waterman, A. D., S. L. Stanley, et al. (2006). "Living donation decision making: recipients' concerns and educational needs." Progress in Transplantation 16(1): 17-23.
   CONTEXT: Despite the advantages of living donor transplantation, evidence suggests that some potential recipients with living donors have psychological concerns that prevent them from pursuing living donation. Addressing these concerns through education may increase the rates of living donation. OBJECTIVE: To understand the psychological barriers and educational needs of potential kidney recipients regarding living donation. SUBJECTS AND DESIGN: Qualitative focus group study of kidney transplant recipients, donors, and family members to explore their assessment of the advantages of dialysis and deceased donor transplantation over living donation, their concerns about living donation, and what types of living donation education would be most helpful. RESULTS: Kidney recipients reported that they might not pursue living donation because they felt guilty and indebted to the donor, did not want to harm or inconvenience the donor, did not want to accept a kidney that a family member might need later, and did not want to disappoint the donor if the kidney failed. Recipients were generally unaware that donors could personally benefit from donating and would rather wait for donor volunteers than ask anyone directly. Both donors and recipients thought that training on how to make the donation request and education about living donors' motivations for donation and transplant experience could help more renal patients pursue living donation.



Burroughs, T. E., A. D. Waterman, et al. (2003). "One organ donation, three perspectives, experiences of donors, recipients, and third parties with living kidney donation." Progress in Transplantation 13(2): 142-150.
   Although living kidney donors' experiences with donation have been studied, questions of potential bias in retrospective donor reports remain. This study examined the experience of living kidney donation from 3 perspectives: those of the donor, the recipient, and a third party involved with the donation (ie, a donor triad). Surveys were completed with 174 donor triads to examine triad members' perceptions of donors' concerns before transplantation, whether these concerns came true after transplantation, the donors' experiences with surgery and recovery, and whether they would make the same decision again today. Triad members all agreed that donors were highly satisfied with their donation experience and that the relationship between recipient and donor improved after transplantation. Although recipients and third parties correctly identified the donors' primary concerns, they underestimated the prevalence of 16 of 18 donor concerns, including the donors' willingness to make the same decision again. Recipients also overestimated how painful and difficult the surgery and recovery were for donors. The results suggest that retrospective studies of donors may not be marred by significant misreporting or memory biases and that better education about the donation experience for the entire donor triad might provide better social supportfor donors, reduce recipients' guilt about donors' pain, and increase donation rates overall.


Gill, P. and L. Lowes (2008). "Gift exchange and organ donation: donor and recipient experiences of live related kidney transplantation." International Journal of Nursing Studies 45(11): 1607-1617.
   Background
Live transplantation presents many stressors for donors and recipients, yet a holistic understanding of the process, from both perspectives, is limited. Gift exchange is a theory governed by the principles of giving, receiving and reciprocating and has many similarities with the process of organ transplantation. It may therefore provide a framework for understanding donor and recipient experiences of live kidney transplantation. However, the relevance of this theory to live kidney transplantation has not previously been properly explored.
Objectives
To gain a theoretical understanding of the live transplantation experience from the perspectives of donors and recipients.
Design
A phenomenological, longitudinal study.
Participants
All donors and their recipients undergoing live kidney transplantation in a regional renal transplant centre in South-West England (between July 2003 and February 2004) were invited to participate in this study. Of this cohort, 11 families (n = 55%) volunteered to participate.
Methods
Data were collected through a series of 3 recorded, semi-structured interviews with donors and recipients. Interviews were conducted pre transplant and at 3 and 10 months post transplant. Data were analysed using a process of thematic content analysis. Findings were also considered within a theoretical framework of gift exchange.
Results
All donors initially made an instantaneous, voluntary decision to donate and found the decision relatively easy to make. In contrast, recipients found accepting the donors' offer arduous, because of concern for their wellbeing. They were only able to accept the transplant after discussing the matter with their donor and establishing that it was something that they wanted to do. Recipients' lives were transformed by a successful transplant and they were subsequently very grateful to the donors for donating. Donors derived immense personal satisfaction from this outcome and it helped to confirm to them that what they had done had been worthwhile. The transplant did not have a detrimental effect on donor-recipient relationships.
Conclusions
The concept of gift exchange provides a logical explanation of donor and recipients experiences in this study, particularly in relation to factors that influence giving, receiving and reciprocating. This understanding should help health professionals assist donors, recipients and their families throughout this process.


Schweitzer, J., M. Seidel-Wiesel, et al. (2003). "Psychological consultation before living kidney donation: finding out and handling problem cases." Transplantation 76(10): 1464-1470.
   BACKGROUND: Since 1996, a team of medical psychologists, nephrologists, and urologists at Heidelberg University Hospital has developed a family-oriented consultation procedure for donors, recipients, and family members before living kidney transplantation. Qualitative content analyses of these consultations and their follow-up histories are presented, with particular focus on "problem cases." METHODS: Sixty-seven consultation interviews were explored by rating family interaction, consultee-consultant interaction, decision-making process, and intervention strategies in problem cases. Subsequently, 33 catamnestic interviews 1 year or more after living donation were explored by qualitative content analysis for donor and recipient quality of life, quality of relationships, and health status. RESULTS: Generally, donors show themselves to be eager; recipients appear more reluctant. Expectations focus on spontaneity and a "normal life." Fears are usually expressed not about oneself but about the partner involved. Types of confrontation with possible complications are anxious avoidance, active consideration, and optimistic fatalism. Past family experiences of medical traumata may influence content and level of anxiety. Problem cases are characterized by unilaterally dependent close relationships, unrealistic expectations, anxious avoidance of problem confrontation, and negative experiences with the medical system. At follow-up, the majority are in good medical and psychological health. Few donors and recipients are suffering from disappointed expectations or unexpected treatment side effects. CONCLUSIONS: The Heidelberg consultation setting has proven useful for allowing open discussion about critical issues. In problem cases, prescribing a moratorium instead of rejecting donation helps to relax consultation anxiety. Psychological support after transplantation seems to be indicated for a minority with typical first-year problems.

[lola]

My FIL donated to his son in 1980 the kidney lasted over 20 years, and he lived a NORMAL life till his death at the age of 84. FYI in 1980 they cut the donor from there belly button to there spine, the surgery was a HUGE thing for the donor. I also have a SIL who donated to another BIL  5 years ago and she was back to jogging in less then a week, she has a small scar and is able to still wear a bikini..........

[romanyscarlett]

I was under the impression that she wouldn't be able to drive for 6 weeks after surgery. That's what we were told when we met with the transplant team. Although, I was told I wouldn't be able to drive for 8 weeks after my kidney removal but I was back behind the wheel after only 3 weeks and the surgery site was a lot bigger than any scar my mother will be left with.

My mother is the only person holding our small family together and if something were to happen to her, I dread to think what would happen. Like I already said before, my uncle would take his own life straight away. I've often expressed my concerns about my relationship with my step-father and what the situation would become like if something were to happen to my mother. She says she worries about this too.

I have a bit of a guilt complex and feel guilty over really stupid things. Part of my line of thought is that if I can feel so bad over small things, how would I feel if something did happen to her as a result of the operation. I don't think I would ever get over it.

At the moment, I think it may be best to see how things go on the national list and then if things get too much to cope with I can always ask for the donation a bit further down the line.

Someone told me I was being very selfish because I have a kidney I can take whereas there are plenty of people out there who don't have this luxury. If I get one from the national list I'm essentially taking it from someone else who needs it too. I hadn't really thought about it like that before and it's made me feel really bad but I still don't think it's worth the risk to my mothers health.

[Henry P Snicklesnorter]

.

[gothiclovemonkey]

I understand ur pain, my father has offered, even though neither one of us qualify to do the surgery lol I feel that even if we were i dont know that i would want to put him thru that, for ur same reasons...
I also agree with henry, id give any part of me for my son.
I figure if i do become available and anyone tests, ill ask the drs to tell them they cant do it. so the let down wouldnt be as bad...

[Tracy]

Hi!  I read your story today.  I am 41 years old.  I have been on hemo since May of this year.  I feel so much better after just a couple of months on it.  It has been a blessing.  I am on the kidney/pancreas transplant waiting list.  I had one on Jan 09, but they failed 5 days later and they rehooked back up my old ones.  I also want you to know that I am an only child.  I have a mom, step dad, daughter and finace.  That is it.  So I understand about how small your family is.  I had a best friend that went through all the transplant stuff with me.  She practically begged me to let her be tested.  I declined, profusely.  I didn't want her to go through any of it, because I felt like I needed her to help me.  My Mom was a little too overweight and didn't really want to do that.  My gut reaction to your note was don't use your Mom's.  I think her health and your relationship with her is so much more important.  I feel so much better on D and have heard that you can be on it for years and I feel like I can wait to get some organs and preserve my small family.  That is so important to me and I can tell it is to you too.   I would pray about it and ask God for guidance.  You will make the right decision.  Hang in there and thanks for writing.  I feel like someone else knows how it is to have a small family unit like me.

Tracy

[MooseMom]

I understand all of your concerns, but there is one thing that you should consider, and that is the unique horror a mother feels when she sees her child suffering.  My own son, my only child, is mildly autistic, and if there was some part of my body that I could give to him to make his autism disappear, I would do it in a heartbeat and would heartily resent ANYONE who would try to stop me, and that would include my husband.  Your mother has the opportunity to perhaps "make it all go away", and I cannot begin to tell you how much any mother would love to be able to do just that for her child.  There is NOTHING, NOTHING, NOTHING more precious to a mother than the well -being of her child.  NOTHING.  Oh, God, if I could give my son part of my own brain so that his would heal and he could live a normal life...Oh God, I just can't imagine how wonderful that would be.

The fundamental question is how are you faring on dialysis?  There is nothing that says you HAVE to have a transplant if you are doing well on dialysis.  Transplantation does have its downside, and you will find plenty of people who stay with the devil they know.  Ultimately, you are the one who will have to live with the consequences of your decision, and if you are really that fearful for the wellbeing of your mother and the rest of your family, then transplantation is probably not the right thing for you at this moment.

Neither you nor your mother are responsible for your uncle.  I lived in England for almost 20 years, and I know you have a MUCH better public transport system than we do in the US.  Why can't your uncle take the bus or a cab to his doctor's appointments?  If you live in a major city, you probably have access to a tube system...can he use that?  If you are on dialysis, do you not have a social worker who could perhaps give you and your family some practical advice?

[ulrika]

Hi there;
I understand your dilemma. However, as the mother of someone who has been on the transplant list for 5 years I know that your mother, by offering her kidney to you is telling you that you are her priority, and that your life means more to her than anyone elses. I am a blood match for my daughter, but they refuse to let me donate because my blood pressure is slightly elevated. I have begged and pleaded with them to allow me to donate. Of course, the waiting time is a lot longer here in BC, Canada. My daughter, who is a type O blood type may have an other 5 years on the list. My advice to you is to give it another few months, and if you still need a kidney, consider your mothers loving gift, because that is her choice, not yours. That is what I told my daughter before we found out that I am not allowed to donate to her.
Hugs
Ulrika

[VictoriaG]

from the other side of the equation...  I am hoping to be a donor match for my husband. i know the chances aren't great, and we have agreed to not even discuss it unless i am a match, you know, cross that bridge when you get to it. i know he is very against it but after nearly losing him 3 times to this i just want him to hopefully extend his life a little and give his body a break from the ravages of ESRD. i know it is not a cure, the kidney can fail at any time no matter how great a match it is. Our families are mortified by the thought. im only 22 and it is a huge chance to take donating a kidney. although i really dont think my feelings would be too hurt if it failed, it happens and at least we tried. im more afraid of him undergoing the surgery than me, although i know it will be unpleasant. (i joke that i want to do it so i can be out for most of his surgery instead of sitting in the waiting room chewing my nails off) he has a very small family. an uncle who is sick, family that is way too old and lives in italy, a father that drinks like a fish, and a sister we would never ask, so that leaves me and my sister who he would never in a million years take a kidney from unless he was staring death in the face.

I think it would be best to talk to your mother, just the two of you. do your homework, voice all of your fears. thank her for being so brave and selfless, and ultimately it is your decision, nobody elses. if im a match, and my husband tells me absolutly no, which he will lol, i'll be a little hurt im sure but i'll understand were he's coming from.

however, i will beat him eight ways from sunday if he dies on me...-  kidding! 

[Riki]

I understand where you are coming from.  AFter losing 2 transplanted kidneys, I distinctly remember telling my transplant coordinator that I didn't want to ask anyone to donate a kidney to me, because I didn't know what had caused the first 2 to fail.  If I was to lose a kidney that someone gave to me, I wasn't sure how I would be able to tell them that I lost it, if it were to reject.  She told me that I have to have a different mindset, to think of it no longer as their kidney and as my own, but it's not an easy thing to do.

Six years later, I'm ready to hold someone down and cut the kidney out of them myself.  I'm tired of the exhaustion, which somehow adds to the insomnia, but I don't know how.  I don't like that my life is on hold because there's no way I can go to school and miss 3 days a week of classes.  If I was still on PD, I probably wouldn't worry as much, because I did my dialysis on my own schedule then, and I'm not able to do that now.  We are both young (you younger than me) and we have our entire lives ahead of us.  after having 2 kidneys, I've tasted that freedom from dialysis, and I want it back

[Sunny]

I have kidney disease and I am a mother of two adult children.
I know for a fact that if either of my children needed a kidney I would not hesitate to give it to them if I were able.
Your mother loves you enormously. Her act of offering to donate a kidney to you is the act of a very loving mother.
Do not feel guilty about taking her up on her offer. I would do it in a minute for my children. Apparently your mother would too.
Consider yourself lucky to have such a selfless person as your mother.I'll bet she would do anything for you if it would make you feel better and lead to a successful happy life free of dialysis.

[romanyscarlett]

Thanks to everyone for all their advice.

At the moment I'm doing quite well on dialysis as it's not as bad as I thought it was going to be. I'm not sure what I expected it to be like but it's not quite as horrific as I first thought. This is probably largely down to the fact that I still have 4% renal functioning so I have no fluid restrictions. I found out today that my second kidney removal operation will be on 6th October so maybe after that when I will no longer have any kidneys I'll think a little differently than I do now.

I understand why my mother is offering me her kidney and why she wants me to take it. I know she wants me to be well again and it's motherly love but it still doesn't change the fact that there are risks, however minimal, with this procedure.

At the moment I think my best option would be to see how things go on the national donor list and then if things get too much for me I can always change my mind and have the donation from my mother. Like I've said before, the waiting time in the UK isn't that long compared to a lot of other countries. I know there is no certainty that I would receive a kidney in the 2 year average but I have the most common blood group and because of my age I get priority listing. I think it's worth holding out for donor this way in order to guarantee my mothers safety.

It's completely unrelated but a friend of mine lost her mother to cancer last week and she is beyond devastated. I would not be able to cope at this stage of my life if I lost my mother especially if it was all my fault because I'd sent her into surgery. Even if things went well but there were complications years down the line as a result of the donation, I wouldn't be able to forgive myself.

[calypso]

My instinct is to see how things go on the national donor list and if it gets to a point where I can't cope anymore then I know I can ask my mother for her kidney.

You're better off receiving a kidney now when you are healthy, than later if things go wrong. You may even be too sick to go through a transplant later on. I wouldn't take that chance if I were you. A kidney from a living donor usually lasts longer than a kidney from a cadaver.

In my situation I was looking at my sister donating, and I had this real issue of feeling responsibility for anything that would then happen to her that could be linked to her donating. Even though my brain understood that it was her decision knowing the risk and she WANTED to, my heart was feeling quite heavy at the thought of taking from her and potentially making her life worse down the track - I couldn't bear that.

You cannot predict the future. Don't even try. If someone wanted to donate and they were eligible, I wouldn't turn it down. There is no way for you to know what the future holds, but what you DO know is that a human needs only 1 kidney to live. The transplant team makes sure both of the donor's kidneys are healthy.

[calypso]

Someone told me I was being very selfish because I have a kidney I can take whereas there are plenty of people out there who don't have this luxury. If I get one from the national list I'm essentially taking it from someone else who needs it too. I hadn't really thought about it like that before and it's made me feel really bad but I still don't think it's worth the risk to my mothers health.

Yet risking your mother's happiness if something were to happen to you (and it will eventually, so I should say WHEN it happens to you) is ok? It would be well for you to remember no one lives forever, not even your mother will. All we are trying to do here is put off the inevitable. Try thinking of both lives as equally important.

I am now convinced ESRD patients are terrible decision makers due to confusion from the illness, and should receive some sort of counseling.

[Sunny]

I have spent many a sleepless nights wondering whether I should accept my oldest sister's kidney. There is a lot of soul searching that goes on for all of us when we consider accepting a living donor kidney. Yes, I will be accepting her kidney sometime soon because I know it is something she wants to do for me more than anything else in her life right now. I will not be feeling guilty about it any longer either because you wouldn't believe the tests Stanford put her through to be cleared to do it. They would NOT allow it if she were not in tip top shape. I say let your mother be tested and see what happens.

[okarol]

Thanks to everyone for all their advice.

At the moment I'm doing quite well on dialysis as it's not as bad as I thought it was going to be. I'm not sure what I expected it to be like but it's not quite as horrific as I first thought. This is probably largely down to the fact that I still have 4% renal functioning so I have no fluid restrictions. I found out today that my second kidney removal operation will be on 6th October so maybe after that when I will no longer have any kidneys I'll think a little differently than I do now.

I understand why my mother is offering me her kidney and why she wants me to take it. I know she wants me to be well again and it's motherly love but it still doesn't change the fact that there are risks, however minimal, with this procedure.

At the moment I think my best option would be to see how things go on the national donor list and then if things get too much for me I can always change my mind and have the donation from my mother. Like I've said before, the waiting time in the UK isn't that long compared to a lot of other countries. I know there is no certainty that I would receive a kidney in the 2 year average but I have the most common blood group and because of my age I get priority listing. I think it's worth holding out for donor this way in order to guarantee my mothers safety.

It makes sense to me, if you're doing ok, you may be fine on dialysis for some time. As you mention, once there's no more function you may feel differently.

A transplant is not a cure, just a lot more convenient treatment than dialysis. As you may have seen on this forum, it doesn't always go smoothly and complications are a possibility. And there are risks with the medications required to avoid rejection. However, dialysis is no cakewalk either!

But if the wait is short in the UK and you can get by for the 2 years, it may make sense to wait, especially if the risk to your mom is very distressing to you. If needed you always have her tested if things did not go well in the future. As a mother, however, I think we want to do all we can to save out kids, and I can imagine your mom is the same way.

[Riki]

There's nothing wrong with letting her get tested to see if she's even a match.

Neither of my parents are a match for me.  They were told when I was a child not to bother, because neither of them are the same blood type as I am.  My brother, however, we've no idea about.  Mom doesn't know his blood type.  I know he doesn't want to give me one of his kidneys, not that he doesn't want to see me healthy, he's just afraid of the surgery, but I would love for him to be tested, just to see if he could donate.  After that, it would be his decision.  I don't think I would refuse it if he genuinely wanted to donate.  I feel for my mom, though. Would be one nerve racking experience for her, with both her kids in surgery at the same time.. *G*

[romanyscarlett]

We already know that she is a match. She has the same blood group and 3 markers in common with me.

A slight glitch has come up though. They have discovered a small amount of scarring on her kidneys which is probably the result of a kidney infection over a decade ago. We have been told that it will be up to the transplant surgeon as to whether or not he decides it is suitable for transplant. The scarring is only small but it's enough for the nephs to say it could go either way and it's 50/50 as to what the surgeon will say.

My mother is going to Bristol Hospital where the transplant surgeon is based to have an angiogram and to see what he says about being able to use the kidney. This is a month away though so we won't know until mid-October what the outcome is.

I'm still not keen on taking the kidney anyway and we've agreed to see what the surgeon says because there's no point in even considering taking the kidney until we know if the surgeon will use it.

I've mentioned my uncle being ill and needing help getting to the hospital so I wouldn't consider taking the transplant until spring next year anyway. We live in Bournemouth which is not known for its wonderful transport infrastructure. The buses or "mobile asylums" as I like to call them are unreliable at best and a person with emphysema doesn't really want to be walking to and from bus stops in the wind and rain let alone coming into contact with all the coughs and colds people on buses love to share with their fellow passengers. He can't afford to get taxis to every appointment so that is out of the question. There is the option of hospital transport which is when members of the public volunteer to drive patients who have transport/mobility issues. However I've used this service when I had my first nephrectomy and there are always other patients in the car too. Like with the buses I'm mindful of the obligatory viruses that go around in winter and that my uncle's health problems are to do with his lungs. If he was to get a chest infection it could lead to extreme complications.

[RichardMEL]

Perhaps the universe is "helping" you with your decision by, in a way, taking it away from you. That's what happened with me and my sister, and in a way I'm greatful for it, because if it really DID come down to me I am not certain which way I would have gone. If I said yes, then I know *I* would not be 100% comfortable with that (and that is wrong) and if I said no, then my sister(and possibly others) might resent me for making her go through all the tests etc then saying no. She might even feel rejected, or that somehow I didn't love her or something (and THAT is wrong). Kind of a nol win scenario.

I think you should be prepared for them to deny the transplant. The #1 thing for them is to ensure there is next to zero chance of a bad thing happening to the donor. The #2 thing is that the kidney is the best sort of the transplant. My sister was knocked back because her blood pressure over a number of tests was SLIGHTLY (and I mean *slightly* like 140/90) high and they didn't want to risk taking the kidney out.

The more I think about my own situation I think I would have to accept the donation; my sister (and now my brother) would not offer if they did not want to with all their heart. To say no, even though the reasoning is loving, would be like a slap in the face to them and how could I not say no to such a special gift with all the well intentions that go with it. They know the risks and are willing to go with it if it would mean a better life for me. I think to say no would be worse than saying yes and worrying about it.

I wish you luck with whatever the surgeon says in Oct and if you still have to make the decision, that you can make the one that is right for you.