Donor rejection reason -> simple kidney cyst (ugh!)

[TeenHatesDialysis]

Has anyone heard of a donor being rejected to donate their kidney due to a simple kidney cyst??? Don't alot of people get cysts that cause no problems and have them for a life-time.  If the cyst has not caused any problems for the person donating a kidney, why would the medical team not want my daughter to have it. She is 14 and has been on dialysis for 15 months and wants her life back (as do all of you) She is blood type B so my entire side of the family was eliminated immediately because we are all As. Of the donors that were either O or B matches, one eliminated based on hypertension, one eliminated due to a fat mass on adrenal gland(?), now this one will most likely be eliminated due to a simple kidney cyst, not PKD, not complex cyst. HAS ANYONE HEARD OF THIS?

She has been listed for a cadaver kidney since May 08. I guess we just continue waiting.....unless we can find someone else who wants to get rejected.  Can you tell I am a bit frustrated    At the end of my rope...I guess I will tie a knot and just hang on

[okarol]

I have heard of people being scrutinized because of a cyst, but then they go on to donate once they are determined to not be at risk. Some centers will not bother to do any additional testing, so it pays to have another transplant hospital where you are multiple listed to send your potential donor to. The criteria may be different. There are other folks who can share their own experience as donors at www.livingdonorsonline.org message forum.

[kellyt]

My husband had two tiny (like size of a grain of sand) masses, one in each kidney, that proved to be calcium.  The transplant center said he would not be able to donate to me (regardless of the fact that he was in excellent health and a 4/6 match) because he "might someday, possibly, MAYBE, get kidney stones".  Doctor that saw him said that if he normally drank alot of water (and he does) that these tiny masses would more than likely dissolve on their own and get flushed out, but "the committee" said "no".  They Mayo Clinic allows transplants with donors who actually HAVE kidney stones.  They either blast them prior to transplant or the remove the kidney, clear it of the stones and transplant.

We asked them if they would consider monitoring my husband for 6 months to 1 year to see if the masses get bigger or go away and they refused.  I was pissed to say the least.  But now I am so thankful because it would have been rough if we were both recovering at the same time.

She'll get her perfect kidney.  Hang in there.  I'm sure it's tough.  Hugs to you and your daughter!   

[TeenHatesDialysis]

Thanks for your input Karol and Kelly -

I just found an article that states that up to 50% of those over 50 have at least one cyst on their kidney.  Therefore, I question if a cadaver kidney with a small simple cyst is disposed of rather than used for a lifesaving transplant.  Are many good kidneys being unnecessarily disposed of, because of a simple cyst? (ugh)!


The medical team is not concerned with the donor's health as the donor would keep the cystless kidney and my daughter would get the kidney with the simple cyst.....seems like a no brainer to me, especially if 50% of people over 50 have kidney cysts and they are not causing anyone any issues.

The medical team will be making a final decision on Monday or Tuesday. Currently, looks like another rejection (I have been given that "It doesn't look good speech" again), but I am praying for something positive.......Thanks for letting me vent.

[okarol]

The donor is over 50? I would want to find a younger donor, if it were me. Jenna's donor was 23 years older than her, but after 8 disqualified donors and 3 years on dialysis, we were feeling like it was a good gamble to go with her. I understand your angst about getting this done, but you also want the best kidney you can get that will hopefully last a long time (I know there are no guarantees.) Because your daughter is under 18 she gets more points which gives her a better chance of getting a deceased donor kidney than an adult, depending on her tissue match. The majority of deceased donors are under 35 years old. I know they say living donor kidneys last longer, but you have to offset that by the potential years she could get. Many patients who received deceased donor kidneys have kept them a very long time. I hope you don't mind the advice, this is just my opinion. I know you'll do the best you can for your daughter!

[staceyand joe92]

I understand you frustration.......I have been through 4 denied donors . I am 0 and most of my family are A.   My daughter has PKD like me and I worry about her watching what I am going through. I can't imagine if she needed a kidney at 16. I would be a crazy mama bear. I wish you all the best and I will pray for your family. 

[Beth35]

I agree with the others in that I know it's frustrating but you want the best kidney there is for your daughter.  You want a perfect kidney for your daughter.  One that will last a long time.  Trust that want her to go through the least many transplants as possible.  I know it's hard waiting.  I have B+ blood type and I waited five years for a transplant on the waiting list.  Hopefully you will find her a better match.   

[TeenHatesDialysis]

Although the person that wants to donate is 46 years old and has a small simple cyst on the one kidney, this person has a 2/6 antigen match and B+ Blood (same as my daughter)....and is in great physical condition.  I thought that with the 2 anitgen match and a living donor that would last much longer and cause fewer complications than a cadaver kidney.  Since she is blood type B, her wait will be much longer on the list since only 10% of the population is blood type B.

I am amazed at learning how many people get rejected as living donors. It takes such a special person to be a donor and from reading all of the posts, it seems that so many are rejected (Ugh-- when there are so few to begin with).  Even though my daughter has only been on dialysis 15 months, she was sick for years prior to dialysis....many of those years were spent going to doctors trying to determine what was wrong.  For the last 6 six years I have been telling myself that I will get her healthy within the year. However, of her short 14 years, she has felt like crap from the time she was 8. I feel so helpless at times as a mom. I wish I would have known then what I know now. I would do anything to take her pain away and give her a healthy life.

I don't have a say in whether they accept the donor or not, I am sure the medical team will make the right decision. Thanks for your support. 

[BigSky]

Her wait time should be about average.  Ones that usually have the longest wait time are those that are type O because O can only receive from O whereas all other blood types can take from their group and O.

You might check with another tx center.  My mother had a cyst and that didnt disqualify her from being a donor. 

[kellyt]

I was told a 1/6 living donor is better than a 6/6 cadaverous donor.   Now that's not to say that there haven't been 6/6 cadaverous  kidney recipients that haven't done excellent!

[okarol]

Her wait time should be about average.  Ones that usually have the longest wait time are those that are type O because O can only receive from O whereas all other blood types can take from their group and O.

You might check with another tx center.  My mother had a cyst and that didnt disqualify her from being a donor.

While O donors are a blood match for all other blood types, that's not how they are allocated.

When it comes to deceased donor allocation the patients are only given their blood type, to make it fair. So any A donor goes to A - O goes only to O recipients, etc. Otherwise O kidneys would be given to everyone else and the O recipients waiting would not get an equal opportunity. The exception is a perfect match.

With living donors, an O can give to any other blood type. There are no restrictions or rules.

This is from: http://www.optn.org/organDatasource/OrganSpecificPolicies.asp?display=Kidney
ABO "O" Kidneys into ABO "O" Recipients and ABO “B” Kidneys into ABO “B”
Recipients.  Blood type O kidneys must be transplanted only into blood type O
candidates except in the case of zero antigen mismatched candidates (as defined in Policy
3.5.3.1) who have a blood type other than O.  Additionally, blood type B kidneys must be
transplanted only into blood type B candidates except in the case of zero antigen
mismatched candidates (as defined in Policy 3.5.3.1) who have a blood type other than B. 
Therefore, kidneys from a blood type O donor are to be allocated only to blood type O
candidates and kidneys from a blood type B donor are to be allocated only to blood type
B candidates, with the exception for zero antigen mismatched candidates noted above. 
This policy, however, does not nullify the physician's responsibility to use appropriate
medical judgment in an extreme circumstance.

[Beth35]

They told me I would wait a long time too because of having B+ blood type.  I waited five years which seemed like an eternity.  I'm not sure how long others waited.

[okarol]

They told me I would wait a long time too because of having B+ blood type.  I waited five years which seemed like an eternity.  I'm not sure how long others waited.

The wait here in Los Angeles for O blood type is now at 7 to 10 years.

[kitkatz]

A cyst is the reason I cannot get a transplant! Bummer.

[Beth35]

The wait here in Los Angeles for O blood type is now at 7 to 10 years.

Holy Cow!  Are you serious?  What is the wait time for B+?  Does it tend to be very different state to state?  I"m in NJ.

[paris]

UNC is 5-6 years for O and Charlotte Medical Center is 3-4 years for an O transplant.  It is different center to center. That is why it is good to be listed at more than one center, if possible.

[paul.karen]

Beth in NYC i heard last week by my transplant team there wait is 7-10 years.
Here in NJ it is around 4-7 and in Philly it is 3-5 years.

I just had an evaluation at Robert Wood Johnson Hospital in New Brunswick.  And will be going in about 2 months to the University of Penn.  To be put on there transpalnt list.

Also keep in mind whereever you get your transplant at you have to be able to get there twice a week after transplant for checkups.

What part of Jersey you in?  Im over here by Princeton in Hamilton.

[Wenchie58]

Waiting time is a "guestimate".  I was told that wait time in my area for me would be 3+ years.   I got my transplant in 15 months.....yes, I consider myself very lucky!

[Beth35]

I live in Hamilton too!  I am going to St. Barnabus in Livingston as that is where I had my first transplant.  I had never thought about getting on the list somewhere else.  I thought that it was a state wide waiting list and not a "center" waiting list.

[kellyt]

The "average" waiting time in my area for an A+ blood type is 5 years.  However, my coordinator told me that several times they had recients called within a few months of being listed.

[paul.karen]

Small world huh Beth 

It is a state wide list. That is why i mentioned NYC & Penn Univeristy in Pa.
Out of state differnt wait list.

  Wenchie you deserved an early gift.  Gives hope to the rest of us.

[Beth35]

It is a state wide list. That is why i mentioned NYC & Penn Univeristy in Pa.
Out of state differnt wait list.

Gotcha.  Yeah, I had thought about NYC the first time but I need to be close to family so I think I'll just stay with St. Barnabus.  They have a great team.  And yeah, it is a small world.

[paris]

Our state has different procurement areas.  UNC and Duke are in the same area, so you can only list at one.  Charlotte Medical Center (3 hours away, but in the same state) is in a different procurement area, so I can be listed there also.  I just called different hospitals and talked to their transplant centers.  They were happy to give the information I was looking for.   

Wenchie is right about the "guestimate".   They try to give you an average.  My co-ordinator had a patient get the call after 6 weeks on the list!   

[Wattle]

It all comes down to your HLA Genetic markers. You will get the kidney if you match... and that is the luck of the draw.

There are common markers and rare ones. It just depends on what mix you have. You get three from both sets of parents, giving you 6 antigens they match with.

I have been waiting four years and unfortunately have rare antigens to match. But you never know I just might get a call .... there has to be someone out there like me......