Donor Evaluation: First Opinion good.. second opinion bad... what next?

[RichardMEL]

Hey all,

A bit of disappointment in my family at the moment.

As some of you may have read in other threads my sister has been going through the testing to donate a kidney to me (a wonderfully selfless act!). Well, all the tests she has gone through have gone OK aparently and the main neph (who is my neph) was pretty positive about things. Then yesterday as part of the process she went to see another neph for a second opinion and general check over. Well this guy was, according to her, very negative. He suggested she was too young to donate (at 38, perhaps the concern was about her maybe wanting to have kids?), and that her BP was too high (she was 120/65 and 130/80 aparently which seems pretty normal to me?!). He also aparently asked her how she would feel if they deemed she could not donate, and she said well she would be disappointed and upset (as you would expect) and he said "oh well don't worry there will be plenty of donors"

well my response to that is HUH?? They seem to prefer live donors if everything checks out OK medically of course (and the psych thing)... and I've been on the transplant list for 3 years so if there are "plenty" of donors they must all be passing by me somehow.

So anyway I am not sure where this whole thing leaves us... can she ask to see another neph for a 3rd opinion? Aparently the two docs will get together "sometime" and discuss her test results and make some kind of decision... so who knows who has more sway?

I'm not as upset as my sister is.. I'm kind of resigned to things I think.. but something we felt might be a fairly by the numbers cross check has become something else and really upset my sister.

Any thoughts ?

[okarol]

This is not unusual, the transplant team here completely informed the donors of all the risks and obstacles. While it may seem like negativity, it does not sound like anything they said would stop a donation from taking place. The team often poses questions and concerns so as to weigh the level of committment from the donor. It's a tough process and many people fall by the wayside because it's so hard. I wish it wasn't this way, but I have heard it many times before. If you can, please have your sister go to the message forum at www.livingdonorsonline.org, or you could post your story there. There's lots of experience and hope there from other donors who have been on the same path.
Good luck,
Karol

[RichardMEL]

Thanks Karol.. I hope it's something like that though he really did sound like he didn't think she was suitable for various reasons like her BP, age etc....

I'll pass your message on!!

[charee]

Hey Richardmel hope things work out for you and your sister Hubby was tested to give me a kidney but we had to many antibodies to each other and was ruled out so I know what that feels like, but in your case it should work out talk to the other neph and push for it..Good luck I"m meeting Lucinda today for lunch how exciting..

[goofynina]

Dont give up my friend,  i'd go for a 3rd opinion if i was you.  Your sister is an amazing woman who loves her brother and wants her brother better, so until you have absolutely exhausted all possibilities, i'd say you better keep trying, sister's can be mean and, yes, sometimes a bit brutal if they dont get what they want,   (just ask my brother and sister)     Good luck and  Godspeed   

[Wattle]

Hi Richard,

My cousin was also knocked back for similar reasons. The main being the child bearing age. She had just given birth to her third and final child. If your sister hasn't had children and expressed a "maybe" attitude to having them one day, this maybe the reason for him saying not at the moment.

I hope it works out for you.   

[RichardMEL]

Actually I think the blood pressure is the major thing. My sister told me she said she isn't likely to have any (her current bf is not one she wants to have kids with and she doesn't see it likely anytime soon)...

Anyway I have asked to see the transplant co-ordinator to find out exactly what the situation is and if we have any options at this point.

See it's a bit confusing since the "primary" doc has pretty much been positive up to this point and the "check" doc has been negative but we don't know the result of them conferring on the test results and similar... so it's a bit up in the air... though we both feel (my sister and I) that it's prob. going to be a no go.

My point of view is that if there's a medical risk to her from BP or whatever then sure.. don't go ahead.. I'd NEVER forgive myself if something happened to her... that's most important to me.

One thing I did wonder is that if the docs feel there are risks but not a strict medical reason to not go ahead.. shouldn't they ask the potential donor if they are willing to go ahead knowing the risks?? or even ask both of us? I mean like sitting you down and saying "We've gone through the test results.. everything looks good but we're a little concerned that your Blood pressure, while under control could pose X risk to you... we think it's a Y% chance...." and let her decide? I mean for a grey area not a black and white medical thing??? any thoughts?

I talked more with my sister and I think her major major disappointment with what happened last week was as much this doctors delivery and "bedside manner" and the way he treated her as much as being disappointed that she can't help me hopefully avoid dialysis for however long.

So I guess we will see...

[Rerun]

If she "at all" wants to have children then I would NOT have her donate.  Not.... the current bf doesn't seem likely.  NO, if SHE at all wants to have children then she shouldn't donate.  Pregnancy is hard on a woman if they have two kidneys let alone one.  Now I know it can be done, but why take the risk. 

This guy may have posed these questions as a "way out" if she was at all hesitant.  It is tough for family members if they "deep down inside" don't really want to go under the knife.  So, if the donor jumps at the chance for a way out they have it.  "OH, sorry my BP is too high can't donate to you brother.  Sorry!  Bye -  See ya at Christmas!"

I hope it all works out for you.  If you sister really wants to donate she will pitch a fit and insist.  Sometimes that is what they are looking for.  That way if something goes wrong then their ass is covered.

[okarol]

I know lots of women who have donated and gone on to have children. The remaining kidney grows larger in the first year and this is no longer considered an obstacle to donating.
The blood pressure issue is important though. High blood pressure damages kidneys and damaged kidneys create high blood pressure.
We were very unhappy with the way our first transplant doctor and coordinator treated a few of Jenna's potential donors and ended up changing hospitals.
I hope things get sorted out for you!
 

[Amanda From OZ]

Hey Richard , I'm sorry to hear about all the dramas you are going through. I think if your sister wants to 100% donate you a kidney then it should go ahead. When my mother donated her kidney to my sister 10 years ago, she had HIGH blood pressure, and had some extra weight on, and they still went through the operation (which was not key hole) and even though she was in a lot of pain, she recovered very well.

Also on the pregnancy note.... i know two women who donated kidneys to their siblings a couple of years ago and they have both had children since then and are doing great.  If this is something that you sister is ready to do... i think it should be all go....

I hope everything turns out well.

Amanda
xxoo

[Rerun]

I know lots of women who have donated and gone on to have children. The remaining kidney grows larger in the first year and this is no longer considered an obstacle to donating.
The blood pressure issue is important though. High blood pressure damages kidneys and damaged kidneys create high blood pressure.
We were very unhappy with the way our first transplant doctor and coordinator treated a few of Jenna's potential donors and ended up changing hospitals.
I hope things get sorted out for you!
 

Really? You know lots of women or your "read" about lots of women who donate and then have childrem?  Well, I don't know any.  I do know "lots" of women who are normal and have two kidneys and have problems with extra fluid and toxins during or especially at the end of pregnancy. 

I'm not saying it isn't possible.....I'm saying it isn't smart.  Pregnancy is no easy thing on the body and you can develop lots of complications after a pregnancy like high bp.  So, have your kids and THEN donate a kidney.

[okarol]

I know lots of women who have donated and gone on to have children. The remaining kidney grows larger in the first year and this is no longer considered an obstacle to donating.
The blood pressure issue is important though. High blood pressure damages kidneys and damaged kidneys create high blood pressure.
We were very unhappy with the way our first transplant doctor and coordinator treated a few of Jenna's potential donors and ended up changing hospitals.
I hope things get sorted out for you!
 

Really? You know lots of women or your "read" about lots of women who donate and then have childrem?  Well, I don't know any.  I do know "lots" of women who are normal and have two kidneys and have problems with extra fluid and toxins during or especially at the end of pregnancy. 

I'm not saying it isn't possible.....I'm saying it isn't smart.  Pregnancy is no easy thing on the body and you can develop lots of complications after a pregnancy like high bp.  So, have your kids and THEN donate a kidney.

Yes I know them. I have many friends from Living Donors Online that have had children after donating. I have been through this issue with 3 females who were evaluated to donate to Jenna. I know 2 women in my community who donated, one had two children and another had three - after donating.

Richard, I can help you learn more about this issue if your sister is interested.

Some transplant teams do recommend waiting to have children. But the general consensus is that it's not considered a high risk pregnancy if the woman has one kidney.

Rerun, you're entitled to your opinion.

[kelliOR]

I know lots of women who have donated and gone on to have children. The remaining kidney grows larger in the first year and this is no longer considered an obstacle to donating.
The blood pressure issue is important though. High blood pressure damages kidneys and damaged kidneys create high blood pressure.
We were very unhappy with the way our first transplant doctor and coordinator treated a few of Jenna's potential donors and ended up changing hospitals.
I hope things get sorted out for you!
 

Really? You know lots of women or your "read" about lots of women who donate and then have childrem?  Well, I don't know any.  I do know "lots" of women who are normal and have two kidneys and have problems with extra fluid and toxins during or especially at the end of pregnancy. 

I'm not saying it isn't possible.....I'm saying it isn't smart.  Pregnancy is no easy thing on the body and you can develop lots of complications after a pregnancy like high bp.  So, have your kids and THEN donate a kidney.

Yes I know them. I have many friends from Living Donors Online that have had children after donating. I have been through this issue with 3 females who were evaluated to donate to Jenna. I know 2 women in my community who donated, one had two children and another had three - after donating.

Richard, I can help you learn more about this issue if your sister is interested.

Some transplant teams do recommend waiting to have children. But the general consensus is that it's not considered a high risk pregnancy if the woman has one kidney.

Rerun, you're entitled to your opinion.

Just wanted to chime in here.   I've got 20 years High Risk labor and delivery on me.  Many, many issues can classify a high risk pregnancy.  Having a single kidney is one, whether from donation or born with only one...................  But High Risk also includes Type I and II diabetes, having chronic hypertension, bleeding disorders, asthma, seizure disorders,  etc.   High risk demands closer surveillance during the course of pregnancy.  It doesn't necessarily exclude one from having a child. 

Being a kidney donor doesn't have to be a deterrent to becoming pregnant.  There are risks in all pregnancies.

kelli

[Rerun]

Yes, exactly what I'm saying... There are risks in all pregnancies so why complicate things by donating a kidney before you have children or are done having children.  Good grief why aren't young teen aged girls asked to be living donors?  Do you know how awful I would feel by asking my sister to donate and then she would have complications having children?  Even though it may have NOTHING to do with donating a kidney I would feel it did and blame myself. 

There is enough guilt in receiving a kidney that the recipient goes through so the team is right.....there are other kidneys out there.

Now, if this were a man it would be different.  They can do what they do with only 1 kidney.  They can do what they do with no kidneys!

[George Jung]

Who am I to say but I agree with Rerun.  Donating an organ is a controlled risk unlike diabetes or other health conditions that are out of our hands.  The guilt I would feel would be overwhelming.  I would wait.

[okarol]

Who am I to say but I agree with Rerun.  Donating an organ is a controlled risk unlike diabetes or other health conditions that are out of our hands.  The guilt I would feel would be overwhelming.  I would wait.

Richard is talking about his sister who is 38 years old. Bringing in the discussion regarding teenagers donating is absurd.
There is risk with any pregnancy. But it isn't an illness and having babies after donating, or receiving a kidney, is no longer taboo as it was in the past.
Perhaps this topic should be taken to another thread as this is only part of Richard's concern with the transplant evaluation, not the primary problem.

[George Jung]

I apologize.  I am not trying to start a debate.  I have re-read the thread and I don't really have any insight or an opinion to share.    At 38 years old if someone wants to donate and they have the medical clearance I can't see why there would be a problem. 

Richard, I hope everything works out for you.

[Rerun]

OK back on track....

Richard's sister was told that she was too young to donate a kidney at age 38 probably because she is undecided about wanting to have children. 

 

If you are considering having children and female you should wait to donate your kidney until you and your child are done with them.  My opinion.

[Wattle]

Regardless of whether Richard and his sister want to go ahead or not, it will not happen if the Transplant team says NO.

In Australia (maybe just Melbourne, i'm not sure of other states) they are still very conservative when it comes to live donors. Talk about hoops tp jump through. It is not as easy to just change hospitals either. The hospitals that do kidney transplants here all confer with each other. 

[RichardMEL]

Just an update on this for anyone interested - The transplant co-ordinator is going to come see me on Tuesday during my session so I can ask my questions.... so we'll see what she has to say.

[goofynina]

Just an update on this for anyone interested - The transplant co-ordinator is going to come see me on Tuesday during my session so I can ask my questions.... so we'll see what she has to say.

Make sure you got that list of questions ready RichardMel and ask sister is she has any questions to add as well   Good luck to the both of you 

[RichardMEL]

Hi again everyone. The lovely Wattle reminded me that I hadn't updated this and she wanted to know what was going on (aussie women are so caring... where's mine?!! lol )... so anyway here's a bit of an update, though there's not really much to tell!

I saw the Transplant Co-Ordinator.. she was really lovely (I had met her before at a seminar so I kind of knew that already, but
she spent about half an hour with me which was lovely). Basically she re-iterated the situation with the 2nd opinion - that it was
just that - a 2nd opinion. She also agreed that particular doctor's manner left something to be desired - but she also pointed out
that it's his job to point out the risks to my sister as he sees them. She also agreed that my sister's blood pressure, while currently
under control, could well be an issue (in that if it gets OUT of control when she's only got one kidney, it could be really bad for
her - and none of us want that!).

Anyway the process will continue with an evaluation meeting with all the doctors in the department who weigh up the pros and
cons and make some kind of a medical decision. I asked that if it came down to them being reasonably OK medical wise, but more
of a question with risk, such as the question of my sister's age and the possibility of having children - would we be given an option
to go ahead or not given the risks? She said yes, and that it was called informed consent... they would outline the risks as they see
them but if my sister still wanted to go ahead (or we did) then we could as long as it was firmly understood that we were advised.

She also promised to follow up with my doctor on this as to where we are at. So far she sent me one update email which
was nice but didn't really say anything much.

I didn't ask about another opinion at this point because it sounds like all of the docs have their 2 cents anyway going over her
test results and so on. Perhaps if they deny us we can try a different hospital/team and see what happens though it will likely
mean going through all the tests again??!!

So anyhoo that's it for now....

[tamara]

Thanks for the update Richard, we are here for you and hope things go the way you two want 

[RichardMEL]

thanks... but if there's even a chance something could happen to my sister I wouldn't want the donation to happen. It's bad enough I have problems I would never forgive myself if something happened to my sister because of a donation.

[Amanda From OZ]

Richard i understand your concern. Hope thing turn out for the best... my mother had high blood pressure when giving my sister a kidney, the doctors said that because my sister was so ill it wasn't so much of a concern, anyhow my mother wouldn't of taken no for an answer.

My partner got tested to become a donor when i first got on dialysis, but due to some health issues it didn't want it to happen, like you i wouldn't live with myself if something happend to him.

You seem to have been blessed with an amazing sister. Take things slow and see what happens...

Good luck.... we are hear for you.