Fifth call

[MooseMom]

I received my fifth call tonight, my fifth offer for a kidney.

The kidney was from a high risk cadaveric donor.  He was 29 years old, died from a heroin overdose, had genital warts and had had paid for sex with an unknown individual.  Since I am not on D yet, I naturally turned this down.

I am still on the ECD list at Rush but intend to remove my name if I am successful in being double listed at Madison.  Tonight was my third call about a kidney from a high risk donor (not even ECD, but HIGH RISK!), and it just made me feel rather glum.  Only 29 and already ravaged by drug abuse and STDs.  What kind of a life must this person have had?  Maybe he thought he had a wonderful life, but somehow I don't think so.

I wonder how often these high risk kidneys are actually accepted and transplanted.  Anyone have any idea?  Has anyone else here received an offer for a high risk kidney?  Anyone ever say "yes"?

[okarol]

No one wants to be a drug addict. It's a terrible sickness. Without treatment, well, here's the result.
I am glad you didn't take that kidney. They only can tell you what they know. there's a good chance they don't know it all.
I know one person who took a high risk. He was 68 years old and afraid he'd never get another call. He is doing ok so far.

[Deanne]

I intended to sign the ECD form, but I procrastinated and after hearing about your ECD/high risk calls, I decided to wait until I'm on dialysis before I go there. I think it would be very hard to get those calls that you know you need to turn down. Five of them - wow.

[cattlekid]

MM, if you're willing to share, I am very interested in the reasons behind why you chose to go on the ECD list.  Only because I was informed of the ECD list when I was listed at Northwestern, but told that there is no reason why I should sign up for it.  The rationale I was given is that because I am relatively young and doing well on dialysis, that there would be no reason for me to expose myself to the risks of an ECD kidney.   

BTW, I'm still working on Madison.  I sat on the paperwork over the holidays and just got my records sent up there to JBB two weeks ago.  I have the dental appointment here tomorrow so I'll have the dental clearance done at that time and faxed up to her tomorrow, then I'll start hounding her to get my evaluation appointment. 

[MooseMom]

MM, if you're willing to share, I am very interested in the reasons behind why you chose to go on the ECD list.  Only because I was informed of the ECD list when I was listed at Northwestern, but told that there is no reason why I should sign up for it.  The rationale I was given is that because I am relatively young and doing well on dialysis, that there would be no reason for me to expose myself to the risks of an ECD kidney.   

BTW, I'm still working on Madison.  I sat on the paperwork over the holidays and just got my records sent up there to JBB two weeks ago.  I have the dental appointment here tomorrow so I'll have the dental clearance done at that time and faxed up to her tomorrow, then I'll start hounding her to get my evaluation appointment.

Simply put, it seemed like a good idea at the time.  I was not pushed into it, but I was told of the option, which I appreciated because I wanted to be well informed.  I just had/have no idea when I will start dialysis and once I do, how well (or not) I will do on it, so I thought I should just keep all of my options open.  I was told that I could always say "no", and that's what I've done.  I am coming up to my 55th birthday, so I am not "relatively young" like you are!  LOL! 

Then, at my first annual follow up appt with Rush, the coordinator immediately started the conversation about ECD kidneys.  She gave me a list of questions to ask if I got another call.  I asked her what, in her opinion, would be best for me...to accept a relatively good ECD kidney and thus avoid dialysis altogether, or allow myself to decline to the point of having to start dialysis and THEN wait for a good kidney.  I just really don't want to have to start dialysis if I can possibly avoid it; I just have it in my head that the initiation of D is filled with all sorts of new perils.  Her answer was that I'm in a very gray area and that she couldn't answer that for me, which at least is honest.

When I relayed this conversation to my neph, he immediately insisted that I be listed at Wisconsin, and I have my appt next month.  JBB told me that with my blood type and a PRA of zero, she's looking at a wait time of maybe 9 months, which is a lot better than 4 years at Rush.  I've been on the list already for 21 months, so I have a decent chunk of time accrued.  So, if my chances for a pre-emptive transplant really ARE that much better at Madison, then I'll have my time transferred there and will take myself off the ECD list at Rush once my time is officially transferred.

I hope my reasoning makes sense.  It did to me about a year ago.  LOL!

Re Madison, I can tell you this much.  Once you fax up your info to JBB, she will take up to four weeks to review it and to show it to her team.  She will then inform you of whether or not you need this extra test or that extra test.  If you need no further testing, she will call you and spend fifteen minutes or so asking some basic questions, like your drinking habits, recreational drug use, the usual stuff.  Once she has everything she needs, then she will have their scheduler call you to make the actual appointment.  They then will send you a map of their campus, directions to Madison and other promotional/informational material.  My husband is going to take three days off, so on the Tuesday we'll drive up there, have the appt on Wednesday and then drive back on Thursday.  We need a break and thought this would be a good time to slow down a bit.  Madison has a "concierge" service that can make hotel reservations for you at a reduced nightly rate, so we had them book us a room for those three nights.  That was very convenient!

[jeannea]

I was offered a high risk and I am not on the ECD list. Anyone can get offered high risk. Mine was a prostitute who had had STDs and died of an overdose. I turned it down but found out someone older than me at my center got a transplant that night. I don't know if it was the same kidney. He had trouble and had to do more hemo for a few weeks til it kicked in. Last I heard he's doing well. For my age it's too much risk. If I was 75 and doing badly on dialysis I would take it.

I'm not sure you've actually been offered an ECD kidney. Those are usually just from people over 60 years of age occasionally with other health problems due to age. If you're 70 and offered a 70 yr old kidney that may be fine for you.

Although my first kidney was almost 60 since I got it from my mom.

[MooseMom]

I was offered a high risk and I am not on the ECD list. Anyone can get offered high risk.

I did not know that!  I just assumed that you'd be offered a high risk kidney only if you were on the ECD list! 

I'm not sure you've actually been offered an ECD kidney. Those are usually just from people over 60 years of age occasionally with other health problems due to age. If you're 70 and offered a 70 yr old kidney that may be fine for you.

I guess I've just assumed that I'd been offered at least 3 ECD kidneys because
1.  The wait time here is about 5 years, and I got two calls for kidneys after only 18 months on the list.
2.  The first of those calls was about a kidney where the donor was 64 years old who had died from head trauma after a fall.  Her creatinine was a bit on the high side.  That's all I can remember.
3.  The second of those calls was about a kidney from a young woman who had been bi-polar, and they thought she'd died from a drug overdose.  Her kidney had not begun working yet (ack!), but the surgeon "felt sure" that it would start up eventually after being transplanted (double ack!), so I'm thinking that yes, that would be an ECD kidney.
4.  I don't remember the details of the third one.

My very first call was about a kidney from a donor who was healthy but had been living and sleeping with his HIV positive girlfriend, so he was deemed "high risk".

If UNOS implements their new allocation protocol where they will more evenly match donor age with recipient age, then age alone probably wouldn't be enough to qualify a kidney for ECD status.  So, I guess you'd then be right to say that in the case of 1. above, that technically would not have been an ECD kidney had not there been the creatinine issue.

Or, am I missing your point?  (Probably!  LOL!)

[Deanne]

I remember they told me there are several options. I don't remember the acronyms for them, but they each have separate permission slips. They said the won't call me for them unless I sign the appropriate paperwork:

• High risk donors, like MM describes
• Older donors or donors otherwise outside the normal criteria, but not in one of the risk groups (this group excludes drug users & other such risk cases)
• Young children where they's tranplant both of the child's kidneys together into one adult recipient.

[WishIKnew]

My kidney was from an ECD.  He was extended criteria only because he was over 60.  I'm 48.  I found out he was 61 with great kidney function.  The surgeon said my kidney looked like it came from a 20 year old.  I have no problem with that.  so far so good.  Now, high risk, I've never even heard of that...

[KarenInWA]

I am 38 and received a live donor kidney from a 67 year-old extremely healthy non-blood related relative. Everything was going great until my recent kidney injury from a large hematoma. Now Lynette the Kidney is on the mend, keeping my potassium at bay, and creatinine is on a steady decline. HGB keeps rising, too! I lost a lot of blood due to the surgery, so had to have 2 units of blood during one post-op dialysis session (due to high K at the time) and I had one shot of 100 mcg Aranesp on the day I left the hospital. I only had the one dialysis session, and am happy to report that the fistula worked beautifully! (whew!) Now I'm just laying low and listening to my body when it says "stop, I'm tired!"  I am off work for a while, and am very thankful for FMLA and my very nice supervisor.

KarenInWA

[paris]

My kidney was from the ECD list.  I knew the donor had high blood pressure.  But, with my situation, the surgeons and transplant team knew this was a once in a lifetime chance and said the kidney looked perfect for me.  At my age, I had to say yes.  19 months later and I have had no problems.    I tell people it isn't a perfect kidney, but it is perfect for me.   Each had to decide what is best for them

At a certain age or certain criteria, the surgeon will suggest being on the ECD list.  It is a very personal decision.   

Moosemom -- I can't imagine having 5 calls.  Your nerves must be shot some days.

[Chris]

This just came to my mind with Moosemoms latest update, how do the centers know so much information about the deceased donor?

[Rerun]

I'm surprised he was accepted as a donor.  Yuck!

[Chris]

I'm surprised he was accepted as a donor.  Yuck!

That was my thinking too rerun.

[boswife]

MM, was just thinking about you.  Do you feel 'ready' if they called with what you would accept to be the perfect kidney for you?  As in, do you feel your far enough into your disease that you believe it's actually time to go for it, and are you ready emotionally to go for it yet?  Im such a 'in denial' person that i wonder when i would say, Yes, this is perfect and i am ready and go for it.  I just wonder how sick i'd have to be to actually 'be ready'.  just thoughts im having and wonder how or 'where' your at with it all.   

[MooseMom]

paris, if I had been in your situation, I would have taken the ECD kidney offered without a second thought.  If your renal function is better now than it was right before transplant and you're feeling well enough to lead your very busy and demanding life, then you've made the right choice.  You recognized a miracle when you saw one.

Chris, I don't know the answers to your very good questions.  Now I'm curious.  As for why this high risk donor was accepted in the first place, I am assuming that based upon the initial tests on the kidney, it was workable, and I for one would rather see if it could be used as opposed to just throwing it away; there's such a shortage.  But it must be hard to time everything just so.  I mean, the coordinator has to find a willing recipient while the surgeons and nephs determine whether or not it is viable.  I don't know how many possible recipients were contacted before they got to my name.  If I get the chance, I will ask my coordinator those questions.  She's awfully busy and might not appreciate my curiosity.  LOL!

[MooseMom]

MM, was just thinking about you.  Do you feel 'ready' if they called with what you would accept to be the perfect kidney for you?  As in, do you feel your far enough into your disease that you believe it's actually time to go for it, and are you ready emotionally to go for it yet?  Im such a 'in denial' person that i wonder when i would say, Yes, this is perfect and i am ready and go for it.  I just wonder how sick i'd have to be to actually 'be ready'.  just thoughts im having and wonder how or 'where' your at with it all.   

What a great question!  Intellectually, I think I am ready because I am concerned about the cumulative damage that is being done to my body.  While it is true that I am not yet on D, it is also true that I have had this disease for 20 years, and I can't believe that you can have impaired renal function for that long and it not have an effect.  I've been at CKD4 for over seven years, possibly even more, and I've been below egfr 20 for over two years.  Again, I don't think I have been able to escape entirely unscathed.  I've had my cardiac tests done for tx twice in two years, and so far so good; my cardiovascular system seems to be good enough to have me labelled as "low risk" for surgery.  I did have a bone density test 7 years ago, but I fear for these old bones right now.  So, I'd like to have better renal function ASAP for these reasons.
 
If the prefect kidney came along, yes, I'd take it despite not feeling desperately ill just yet.  I wouldn't know how long I'd have to wait for the next perfect kidney to be offered, so I would not wait.

But emotionally, that's another story.  Since the wait at Rush is 3-5 years, I've not really had to think about it all that much.  I was called for the three ECD kidneys but they ended up going to someone else, anyway, so I've not really had to make a decision except for turning down the two high risk organs.  But if I get on the list at Madison and there really is a shorter wait, then I'm going to have to start preparing myself psychologically, and I don't know if that can ever really be done.  I like to think I've prepared myself for dialysis, but I know that when the day comes that I have to start, it will still be shocking and scary and desperately sad.

[Lillupie]

My stupid transplant center wont let me be listed on that list. THey said Im too young at 29. Even thought it looks like im never going to get off of dialysis.

Lisa

[Chris]

My stupid transplant center wont let me be listed on that list. THey said Im too young at 29. Even thought it looks like im never going to get off of dialysis.

LisaIs

At 28 in 2000, I was asked if I wanted to be listed in that catagory. They suggested I shouldn't, it was protocol to ask tho and I didn't want to be listed in that catagory. Your center is trying to give you the best possible organ so you can possibly enjoy your family more than possibly with a extended criteria organ is what I think is their thought process.

[jeannea]

I don't know if you're ever totally emotionally ready. With my first transplant, my mom donated so I knew the surgery date ahead of time and planned my life. With my recent transplant, they had told me 6 mos ago that my wait was about 2 yrs. I adjusted my thinking for that. Then some guy I never met woke me up and told me I was primary. I found the whole process quite shocking. I think I'm only starting to adjust now a month later. Yes I kept a hospital bag packed, etc., but I really wasn't ready for the call. I found this whole deceased donor process very shocking.

Back to ECD, you did get one offer MM if the donor was 64. I don't know your age so that may not matter to you. The high risk donors, it does seem strange that they accept them but I guess they figure if someone wants it with full information they can have it. They know all that info from family members. If there's no family to approve donation it doesn't happen.

[lainiepop]

It's been really interesting reading this thread as im from the UK and it sounds quite different. I wasn't aware there were different lists here for different quality kidneys how does it work in America? Moosemum sorry being nosey whats your gfr at mo does it have to be a certain no to get on, as here i had to hit 15% to go on list. I've been on the list since september last year but haven't been activated as dads' donating me his kidney in 5weeks. Their idea was they'd test my parents and suspend me on the list then if nobody was suitable they could then activate me and id accumulate time being suspended, as they felt it would be better to have a live donor that get one off the list if possible. Im also not on d at mo, even tho function is down to 8%! I dont feel ill and my potassium etc is low so they said theres no benefit as transplant so close.

[MooseMom]

It's been really interesting reading this thread as im from the UK and it sounds quite different. I wasn't aware there were different lists here for different quality kidneys how does it work in America? Moosemum sorry being nosey whats your gfr at mo does it have to be a certain no to get on, as here i had to hit 15% to go on list. I've been on the list since september last year but haven't been activated as dads' donating me his kidney in 5weeks. Their idea was they'd test my parents and suspend me on the list then if nobody was suitable they could then activate me and id accumulate time being suspended, as they felt it would be better to have a live donor that get one off the list if possible. Im also not on d at mo, even tho function is down to 8%! I dont feel ill and my potassium etc is low so they said theres no benefit as transplant so close.

Here in the US, once your egfr falls below 20, you can begin the tx evaluation process.  My egfr went below 20 in November 2009, and I had my initial eval in Feb 2010.  I jumped through all of the hoops and was listed in July 2010.  At last count, my egfr was 14 (March of this year).  I am not on dialysis yet.

I am not sure when they started using ECD kidneys, but the need is so great and the supply is so small, relatively, that I guess it was decided that ECD kidneys might be useful to those who or older or who are not doing well on dialysis.  I reiterate that I was not pushed into signing up on that list, but I do think it was appropriate in my case to be offered the choice because I am now in my mid 50s and, therefore, an older kidney may be fine for me.

I can understand your medical team's reasoning regarding your parents' testing and your placement on the list.  If I had a living donor lined up, I'd do what you are doing.  But after being on the list for almost 2 years, I figure that if someone was going to offer me a kidney, they'd have done so by now.  My parents are dead, I have no siblings, my only child is autistic and my husband is ABO incompatible, so it's not like I have a large pool of people to call upon.  So, I'll take my chances with a cadaveric kidney; at least this way, I don't have to be forever indebted to a live donor, and there's a modicum of relief that comes with that.

I didn't know you had to be at 15 in the UK in order to get on the list, although 15 is the cuttoff point for a diagnosis of CKD5, so I can see the logic in that.  I'd be really interested to know if the UK has any kind of ECD protocol.  They might, even though they did not tell you about it.  Maybe they thought it would not be appropriate for you.  Anyone else in the UK know if the NHS uses ECD kidneys?

[amanda100wilson]

 my chances for a transplant are slim so I signed up for ECD but refused high risk.  don't want to introduce extra problems.   as an aside, I have no patience with people that Wreck their lives in the way that this donor did.  Okarol, whilst I agree that no-one chooses to be a drug addict, that person did choose to take that first step when they chose to do drugs.  for me kidney failure came at a relatively young age and I had no choice.  I lead a clean life, ate sensibly, and tried to look after myself e even before I got I'll.  sorry if you think I am heartless but pity for someone who died because they made poor life choices really touched a nerve with me.

[lainiepop]

Thanks for the info moosemom, I understand your logic in going on the list, especially if no-one has come forward. I was quite lucky in that both m y parents did (i was born with only the one scarred kidney and my parents were orginally told i would die, but its lasted 30yrs and 2 kids, so i think my mum especially has always felt guilt that i was born this way, not that its her fault but as a mum u blame yourself if somethings wrong with ur kids automatically i guess, i know mu daughter was 5 weeks early and high risk for downs she was fine but i went over and over whether i shouldve got pregnant and what if there was somehthing wrong etc) anyway, and my husband , we got as far as finding out he was same blood group then they dropped him as said parents would be best for 1st transplant anyway. My sister in law, sons godmother and daughters godmother all said they'd be tested oif no-one else was a match too. who knows whether or not this wouldve happened.
 im not aware of a system here offering ecd or high risk kidneys is this when the kidney is from people who are older or had health issues themselves? i dont know  but u could be lucky if u got one from a healthy over 60 even if cadavaric, my dad is 66 but his kidney function is that of someone in their 40s. His health tests were excellent, all good cholestrol, no bad. Transplant nurses said im getting a tip top kidney which will have a lot to live up to when transplanted as it works 50% for him being 5 foot 10 and 11 stone so in me ( a mere 5 foot 7 stone!) it should hold up pretty well lol!
I think its good they get the ball rolling when gfr hit 20 gives u more scope for a pre-emptive live donor one if thats an option. My gfr was 23 when i got pregnant with my daughter (it was around 30 before ii had my son, he's 4 she's 9mths), it was 17 when i had her then a month later dropped to 10. so was very sudden for me and i wish it had all been prepared for earlier as it was a lot to deal with after having a 3lbs12 baby 5 weeks early with all my hormones as well. Im lucky its worked out as it has but i think the american approach seems much better, we felt like we were trying to beat my body before it needed dialysis, i should just about hold out. the other thing id never heard of having a hep b jab b4 dialysis and i had to have 3 doses over an 8mths stretch i think only had my last one last week and originally they thought id be on dialysis in weeks. my husband wasn't too happy he said id had this all my life and they shouldve done it years ago!
I do feel very lucky tho, my friend had a baby boy 2 mths early he's 13mths now his kidneys are very bad and they've already said dialysis/transplant is not too far away, makes me think myself lucky as cant imagine any of this for a baby. Im hoping the docs are wrong like they were bout me!
Take care

[MooseMom]

Laniepop, fyi here is some info on ECD as practiced in the US...

https://secure.ucdmc.ucdavis.edu/transplant/nonlivingdonors/nonliving_exp_criteria.html

I realize now that I was wrong in a previous post and that, indeed, any kidney from a donor over 60 years of age is considered ECD.  I thought, wrongly, that it was over 60 PLUS another issue, but it is in fact 50 plus another issue.  At my age of 55, I would be happy to get a kidney from someone who was 60 but in otherwise good health, ie, normal creatinine, etc.

Amanda, I also get  a bit peeved when I see otherwise healthy people abusing their bodies.  I, too, had always worked to take care of myself, but I got kidney disease, anyway.  Still, anyone suffering from any sort of addiction lives in their own kind of hell, and that's such a shame and such a waste.