Conflicted (and feeling guilty)

[ukxg113]

My father is seeking a kidney donor.   I agreed to get tested, but I am very conflicted and feel immense internal pressure.

Did anyone seek counseling before making their decision?

My father is nearly 70 years old and has had a number of health issues in the past 2-3 years (heart, blood clots, prostate cancer).  One hospital turned him down immediately because he hadn’t been cancer free for a certain number of years – I have no idea if they would’ve considered him otherwise.  The hospital that accepted him did so only if a living donor is available.

He has only asked immediate family members (small group) to consider donating.  All but two were ruled out immediately for various medical reasons.  One was ruled out after initial testing.  So his hopes, and those of my whole family, are solely on me.

I am just beginning the testing but can’t seem to get past a few things and feel selfish and guilty for it.

Complications for the donor do happen.  While I love my father dearly and wish to help him, are the risks to my health (both immediate and long-term) worth it based on his age and health history?

If I am a good donor candidate and don’t go through with it, I could be sending him to an early grave.  Could I live with the guilt? If I go through with it out of a sense of family guilt, I fear I will be angry and depressed (no matter the outcome for my father).

Has anyone faced a similar situation?  What did you do?

Thanks for listening and offering your thoughts.

~Very Conflicted

[Fr Pat]

     I would suggest that it might be helpful for you to ask your father to give his doctor authorization to talk with you privately and share with you all your dad's pertinent medical information. It is reasonable, I think, to ask about the estimated chances of short-term and long-term success of a living transplant given his health situation. The anti-rejection drugs which a recipient has to take after receiving a transplant also (if I understand it right) weaken the immune system to the extent than any existing cancer may then run wild. Some patients are not placed on the waiting list for a transplant from a deceased donor precisely because their chances of success are so small. Some patients have medical conditions that make ANY surgery very risky.
     If his doctor does believe that he would have a good chance of success with a living kidney transplant, I think it would also be wise to let the need be known also to friends, neighbors, former co-workers, alumni, members of church/synagogue/clubs etc.  There may be among them persons in their 50's or even 60's who would be both willing and able to donate. Given the shortage of organs available for transplant (and your not knowing if in the future someone else may need a transplant from you) it can be wise to try to transplant organs from older donors to older recipients (I donated at age 56).
     Hope these ideas are of some help. Take your time and think things over carefully.
       best wishes,
          Fr. Pat
 

[brookeallison]

i had similar concerns because of the circumstances of my donation. i felt pressured to donate from my family and not to from my husband at the time. i was also withholding some information (not about my health), but such that would've completely stopped all of the pressure and ruled me out. i wanted to do the right thing because it was the right thing to do and because i couldn't deal with the guilt if he would've died seeking another. despite the circumstances, i'm happy i did it...i wouldn't change a thing. i felt resentment at the time, but not anymore.

[sherri]

Many family donors are very conflicted about their decision to donate. I certainly was and still have many guilt feelings about it. I did go to a social worker outside the transplant center before donating, during the process and still go 3 years later (a sequella to my donation surgery.) This is a major decision and getting some unbiased professional input may help you with your decision. Depending on the relationship with your family, you may even consider having some family sessions so that you can express your feelings, your ambivalence, your fears about possibly becoming a donor. For me, I was very angry for a long time, that my brother asked me for one of my kidneys and expected me, my husband and children all to give up a kidney like it was no big deal.I felt an enormous amount of pressure and would have loved it if someone would have just said you don't have to do this.

 I think the reason why so many recipients ask their family members straight out for a kidney, like its no big deal, is because of the information they receive. The doctors explain that the surgery is minimally invasive, the donor goes home after two days, the insurance covers the surgery and many people live with one kidney just fine. So it is no wonder why some recipients feel it is ok to count on a family kidney. I think the transplant team misses the complex relationships between families, the nuances, the history and the baggage we all carry around.

I too worried about my future health, whether my brother would take the necessary steps to live a healthier life and protect his new kidney, whether my children will inherit the kidney disease that is prevalent in my family. But I have learned to temper those fears and focus on what  I can control. My blood pressure started to go up so I have been increasing my exercise which keeps it at a much more normal level. I do try to watch my diet, eat low salt and low fat. The other factors I can't control.

Given that your father is an older recipient, it makes sense to meet with his doctors and see how successful they feel a transplant will be for him. One center turned him down, with probably good reason. You may want to discuss with the social worker how you would feel if the transplant failed. If you feel pressure and are not sure you want to do this, perhaps consider putting off testing just yet. The more you test and match the more pressure you may feel to donate. Your family may not advertise the need to others in the community if they think they can count on you. You can always continue with the process.

The transplant center will also let your family know that you are not a good candidate to donate if you choose to decline. In this way, you can decide not to be a donor without having to let your family know that you declined. Donation surgery is not for everyone and there is no shame in saying this is not the right time for me. Your concerns are valid and real.

Let us know how things work out. Take your time deciding. Dialysis is an option to hold your Dad over until a suitable donor can be found.

All the best,
Sherri

[Morgan]

You should ABSOLUTELY not feel pressured. Frankly, I'm surprised that he would even ask you, specifically...it's really not fair to you, at all. I know that I can't just say, "Don't feel pressured," or, "Don't feel guilty." You are obviously the kind of person that feels compelled to help people and lessen suffering in whatever ways you are able, and in this case you would be attempting to postpone your own loss, but you will still lose him, eventually. But, please don't project your feelings of responsibility onto others...your family might not all feel that you should donate. I feel terrible that you have been put in a position where you must feel guilty for protecting your own health and well-being, and I truly hope that your family makes it clear in the coming days that they will love you no less for deciding not to donate if that is your decision.

Morgan

[Aries7]

I think you have received some fantastic advice from everyone who has responded. I think it is very normal to be apprehensive about donating. In my case, I was not conflicted - I KNEW I wanted to do this and was meant to do it. However, my situation was also very different than yours. I donated to someone who was much younger and didn't have any other health issues besides the actual kidney disease. The fact that your Father is 70 and has several other serious health issues makes this a much tougher situation.

I really like Fr Pat's idea about you getting permission to speak to your Father's doctor in private. This would give you a chance to get your questions answered as to what your Dad's prognosis is with or without the transplant.

If you do decide to donate, it should be because you truly want to, not because you were pressured to do so. You should NOT feel guilty if for any reason, you decide not to donate. I think getting the word out to other people as Fr Pat suggested is also a great idea. You never know who else may come forward and be willing and able to donate.

As Sherri mentioned, at any time during the testing process, you can opt out for any reason. The medical staff will tell your Dad that something came up that no longer allows you to be considered as a candidate. (they will not say it is because you opted out.)

Please let us know what you decide. I wish you all the best!

Linda

[livingdonor101]

Not surprisingly, I disagree with Fr. Pat. Your father's doctor is just that - HIS doctor. Your father's condition, or the chances of a successful transplant (and an honest practitioner will not make promises, but simply regurgitate statistics) should not be the determining factor in your decision. The fact the transplant center would only accept him as a recipient if he had a living donor says they don't think he's eligible for the deceased donor waiting list. Why is a living donor's life less important than a deceased donor kidney?

Transplants are not cures. There is no guarantee, even if you decide to donate, that your father will improve. If he dies (transplant or not), it will because of his disease, not because of anything you did or didn't do. Considering your father's prior health problems, I'm not sure the phrase "early grave" is appropriate. Statistically speaking, anyone diagnosed with end-stage renal disease has a shortened lifespan (There's an OPTN chart and explanation of the whole thing if you'd like me to send you the link.); the prior cancer and otherwise certainly don't help.

It is not selfish to consider the effect something like this would have on your life. I understand feeling obligated to your dad, but you're also responsible to the other people in your life (significant other, children, friends, coworkers, relatives, etc) and most of all, to yourself. Living donors can die, and they can experience some debilitating physical consequences. And yes, they can also struggle with depression, anxiety, and PTSD. It's more than reasonable for you not to want to take those risks for yourself.

take care. 

[donor99]

The fact the transplant center would only accept him as a recipient if he had a living donor says they don't think he's eligible for the deceased donor waiting list. Why is a living donor's life less important than a deceased donor kidney?

In order to receive a live donor transplant the recipient must meet listing criteria for the deceased donor list. I'm sure the reason they will only accept him if he has a live donor is because he meets criteria now but is not likely to survive the the waiting time for a deceased donor which can be as long as 7 years in some places. Hes a candidate now at 70 but will likely die or not meet criteria at 77. It has nothing to do with a live donors life being less important. Some one who is seventy may only survive on dialysis for 3 more years but can survive 9 more years with a transplant.

[livingdonor101]

In order to receive a live donor transplant the recipient must meet listing criteria for the deceased donor list. I'm sure the reason they will only accept him if he has a live donor is because he meets criteria now but is not likely to survive the the waiting time for a deceased donor which can be as long as 7 years in some places. Hes a candidate now at 70 but will likely die or not meet criteria at 77. It has nothing to do with a live donors life being less important.

**the problem is that one transplant enter already determined he's not a good candidate for a transplant, which is the meaning behind "not eligible" for the waitlist. Because there are grey areas in how this eligibility is determined, a second transplant center has said "we'll list you if you find a living donor", which is a bad sign that their primary concern is not the recipient's long-term survival nor the best interest of the living donor. The OP doesn't say if her father is already on dialsysis or not. According to USRDS data, only 5.2% of 70 year old dialysis patients were waitlisted for a kidney in 2008 (last year available data) so it's the current transplant program that is behaving counter to the norm.


Some one who is seventy may only survive on dialysis for 3 more years but can survive 9 more years with a transplant.

**Don't confuse the issue by citing numbers with no references.

According to SRTR data (www.srtr.org), only 28.1% of kidneys transplanted into recipients 65 and over survive for ten years; 60% make five years. Patient survival for living donor recipients 65+ for 10 years is only 42%; 5 years is 77%. The transplant may fail but the patient can survive for some time afterward. 

According to the USRDS, the annual mortality rate of a dialysis patient aged 70-79 is 30%. Less than 2 yrs on dialysis is 21%; 2-5 years is 20% and more than 5 years is 19.98%.

A 70-79 yr diagnosed with end-stage renal disease has a 73% one-year survival probability and only a 3% 10-year survival probability. That is regardless of treatment type.

 

[donor99]

I was referencing this data from the book chapter below


Table 1. Life expectancy by age group



Age Group                        US Population         Dialysis               Transplant
60–64                                21                           4.6                      12.7
65–69                                17.2                        3.9                       10.6
70–74                                13.8                        3.3                          8.9
75–79                                10.8                        2.8                          7.4


Source: USRDS 2007 Annual Data Report

It came from

Chapter 24: Renal Transplantation in the Older Adult
Erica L. Hartmann
www.asn-online.org/education_and_meetings/.../Chapter24.pdf - Similar

[livingdonor101]

The stats I listed are from the most recent annual report.

We both know that until not so many years ago, would-be recipients with living donors weren't registered on the waitlist. UNOS decided they wanted the registration fee from living donor transplants, so required all candidates to be listed. There's been an increasing trend for centers to do pre-emptive living donor transplants, before a would-be recipient requires dialysis. Because of the 'sound medical judgment' thing, this raises the question of whether or not these people should really be listed (are they sick enough), or would they be listed if they didn't have a living donor ready and waiting?

There was an article* within the past couple of years (LDO might have it on their old msg board) where a gentleman who also happened to be a medical specialist of some sort was encouraged to get a pre-emptive transplant. He had severely reduced renal function but wasn't on dialysis. Because he knew that transplants weren't cures but treatments, and his kidneys were doing enough for him, he chose to delay a transplant until his situation deteriorated further. This caused quite a conflict with his providers. Two years later, he underwent a successful living donor transplant.


All of this is to say that even though one must be listed before having a living donor transplant, there is a double standard at work. Deceased donor organs are a scarce and highly prized comodity. The various powers that be are quite picky about how they're distributed (and understandably so). To tell someone "we'll take you as a patient but only if you have a living donor" is to also say "we won't take you as a candidate for a deceased donor transplant". That is quite clearly saying that a healthy person's kidney and well-being is not as precious and/or important as a deceased's.


*I don't recall the author's name, but the essay was written for a renal journal of some sort.

[PhilHoover]

And don't let anyone else (including  YOURSELF) put that kind of pressure and pseudo-guilt on you.

I agree with Father Pat (this time..LOL) in that you should seek your dad's official permission to talk with your dad's physician....

[debbie]

I am an 'old time kidney donor'...1992 to my sister (now deceased Nov 2010 - she was 60 years old)...Her first transplant = she had a cadaver kidney for approximately 21 years, then my kidney which lasted 6 years, then one more cadaver which rejected in about 2 weeks, then on dialysis for the remainder of her life which was approximately 12 years)...

I am a little uncomfortable with responding to this message/thread as I might make readers upset with some of my opinions/thoughts/judgments.  If so, I give my apologies with sincerity.

To begin with, if I knew then what I have known for quite some time now with regard to my own health...I would not have given my kidney to my sister whom I loved dearly.  At that time I was told a kidney from a sibling and having a 6-6 match which we had was supposedly the best for her.  I knew nothing else but that AND I was saving her life - giving her life - we know differently today - I know differently today...it isn't a cure....I didn't 'save her life' - All that I was told and informed was just that, and of course, I was told, my health would never be affected because I didn't need both kidneys - I know differently today - my health has been affected...(I have posted other messages in here regarding some of my health issues if you care to search for it- And, 'my story' in kidney donor experience on this site - 3rd from the top under Debbie...I wrote that years ago and would -suffice it to say- re-write it differently today) 

During the donor work-up in February 1992 I was given a book by the 'counselor' who interviewed me (only about a 20 minute interview) (I wish I could remember the title of that book)...The jest of my recollection of that book that 'stood' out to me was regarding donor guilt which had something to do with being a 'perfect' match.  The point I'm trying to convey is this - the information that was presented to me at that time including the emphasis on a 6-6 match, and of course not being informed at all of any possible/potential consequences that my own health could be affected - I would have had immense guilt had I chosen not to give my sister my kidney.....I simply didn't have all of the easily accessed information, education, knowledge, and research that is available today to make a much more educated decision to donate or not to donate.....Please, please be informed....read all the information regarding the 'good and the potential bad' outcomes/consequences of donating.....AND, know that there isn't sufficient long term 'true' research/studies/information regarding long term and 'true' shorter term potential health consequences for kidney donors.

My kidney did not save my sister's life...yes, it gave her 6 years of having a better quality of life and, of course I was happier for her with being able to enjoy her life more during those 6 years..I can very honestly say that back then, between the time of the donor work-up in February 1992 through to the surgery date September 2, 1991, there was never, ever any hesitation or doubt or fear in my mind - I never felt - for any reason - that I shouldn't donate - It was simply a 'given' - an 'of course' - 'we are a good match' - I had no thoughts at all about not donating....BUT, even though that book I mentioned didn't make a difference at all as to why I donated - I know that given the information - or lack thereof - that I then had from the transplant center - I would have felt, as mentioned before, immense long lasting guilt had I not given my sister my kidney....HOW TERRIBLY, TERRIBLY UNFAIR AND UNJUST THAT WOULD HAVE BEEN FOR ME TO FEEL SUCH ENORMOUS GUILT....

So, again I will reiterate - if I knew then what I know now - I would not have given my kidney to my sister...There are many donors who don't have the health issues that are indirectly or directly or not related at all to having been a kidney donor that I have encountered - and other donors possibly never will...I know and strongly believe this - we need to take care of ourselves - AND - NO ONE SHOULD EVER - EVER FEEL GUILT OR HAVE GUILT PUT UPON THEM FOR NOT WANTING TO BE A DONOR FOR NO MATTER WHAT REASONS THEY CHOOSE NOT TO !!!....

Just a suggestion: If it is possible that 'others' in your life are trying to make or making you feel guilty - and, if they are open minded and will not only listen, but 'hear' your trepidations/concerns - and, they show you they are doing their best to understand and support you - talk to them...try to help them understand whether you donate or you don't......You may not have the outcome you were hoping for, but at least you tried....And, then if they don't 'hear' you - please take care of yourself and depend upon the support from this site and others to help you get through whatever you decide to do.

My best wishes for you,
Debbie





 






 

[ukxg113]

Thank you to each and every one of you for your thoughts and insights. They were helpful and gave me plenty to think about. Thank you for also letting me know it was OK (and not selfish) to consider what impact this may have on my health (both mental and physical).

The short story is that I decided, as much as I want to help my father, that this is not the right thing for me - emotionally or financially. (There are more factors at play in my life and decision than I put in my original post - I was trying to keep it as succinct as possible.)

In the past few weeks I have struggled with how to communicate my decision - take the "medical out" or tell my family of my decision. I wanted to choose the option that would cause the least pain and harm.

My father is switching hospitals and I was asked straight out if I still wanted to go through with this.  That didn't leave me much option. I have told my parents of my decision and will be letting the rest of my family know of my decision.  I still feel some guilt - but deep down I know this is the right decision for me at this time.  I hope my family can understand.  If they can't - I guess that's not something I can control. 

I started seeing a counselor to help me through this and anticipate I will continue with that process for a little while longer.

Again - thank you all for taking the time you did to respond. 

[Fr Pat]

       Best wishes and prayers for you and your family. Try not to be too concerned about what anyboby else may think about your decision, inside or outside the family. Only YOU know all about your own situation, and NOBODY else knows enough to even try to second-guess you. Peace.
     Fr. Pat