Jenna's mom - love/hate dialysis

[okarol]

Hi, My name is Karol. Our daughter Jenna is 20 years old and has been on hemodialysis
(in clinic) for nearly 3 years. I told her about this site and I hope she checks it out. She
has a tendency to isolate and I think it would help her to read some of the posts here.
I have 3 younger kids and a husband who is disabled due to 3 back surgeries and a
hip replacement that have never cured his chronic back pain. We have been hoping to
find a living donor for Jenna, yet no one has been found suitable so far. That's all I can
think to say as an introduction. I included Jenna's website for anyone interested in
reading more. Thanks!
~Karol

[Amanda From OZ]

Hello!! glad you find this site! 

i hope your daughter decides to post here as-well, its a great website and has helped me so much.

[Black]

   Glad you're here; hope your daughter comes.  There are several here that were on dialysis when they were in their teens and can probably relate to her very well.

[Sluff]

  TO THIS SITE.

[vandie]

 
You have come to the right place.  Please encourage your daughter to post.  This is an amazing source of support for so many.

[Rerun]

Hi Jenna's Mom.  Thank you for recommending our site to Jenna.  You will also enjoy this site.  There are parents, spouses and friends of kidney patients on this site.  Has the family offered up a kidney to Jenna?  Sorry, that was personal, but I was just curious.  Please continue to read our site and maybe print off some of the topics and give them to Jenna to read.

 

[okarol]

Thanks Rerun,
I had always assumed I could donate to Jenna but I am the wrong blood type (we explored plasmapheresis but the doctors said since is she's young and has had no transplants or transfusions, that a good antigen match, type O kidney could give her a great chance of many years. Plus they said there's not enough long term results to prove how well it will work.) My husband has elevated creatinine due to years of NSAIDS. Our kids are all younger than Jenna, but her 18 year old brother wants to donate. We asked him to finish this senior year of high school before we will let him get tested. We have polycystic kidney disease on my side of the family, so they cannot offer. My husband's brother (wrong blood type) and a cousin (was told she was too young) are the only family members that offered.

I have struggled with frustration about trying to find a donor. First I have to say I am grateful for the people (7) who have offered to donate a kidney to our daughter, but were found unsuitable for various reasons. I was thinking that I must know about 2,000 people, in my community, schools, church, volunteer group, alumni group, prior jobs, neighbors, 12 step program, family and friends. So why is it so hard to find a donor?

I think most people think that there is an organ bank with kidneys just waiting to be transplanted. They think that she will get a good enough cadaver kidney, even though it has been shown that a living kidney will last a lot longer. They either don't know, or don't want to know, what torture it is to be tethered to a machine, that without which you will die within 5 days. They rationalize in their minds why they don't have to be the one to help.
What makes seemingly average people do heroic actions? I have met many living donors. They are all different ages, socio-economical situations, parts of the country, education and gender. The only thing that they have in common is the willingness to help another person by undergoing surgery to donate an organ. They are a rare breed.

Sorry, that's a long answer!
Karol

[Rerun]

Yes, living donors are truly angels on earth.  Best of luck to you.

[Bajanne]

Karol, welcome to our community.  So sorry for the present pain and frustration.  You have come to a good place where there are people who understand and empathize.  Hope Jenna checks us out soon.  I am sure this site will be a help to her.
[By the way how do you know that you would die within 5 days without the machine?  That is something I have been trying to find out for a along time!]

[Joe Paul]

Karol, welcome to the site. Good to have you aboard

[okarol]

Thanks for the welcome! 

~Karol

[livecam]

Karol, welcome to the site. A living donor would be nice but I think your argument against a cadaveric kidney doesn't make alot of sense.  Yes living donor kidneys tend to be better but by how much we really don't know.  Much has to do with the condition of the donor and cold ischemia time before transplant.  Rejecting cadaveric kidneys out of hand is both foolish and selfish.  Asking someone to donate is a really big deal.  They put their lives and future in jeopardy to complete the process. Since your daughter has been aware of her problem since 2001 and on dialysis for over two years I certainly hope that she has been on the cadaveric list for some years now.  If not I would think that getting her listed would be a priority. Also be aware that if you are willing to travel, multiple listing can get her a cadaveric kidney sooner than you might if listed at a hospital in the Los Angeles area.  San Diego is a good place.  A living donor may or may not come along.  Two coworkers offered to help me.  They were motivated and were worked up but ultimately decided not to donate. That is their right. There were others who offered but were rejected by me because I felt that they were putting themselves at unnecessary risk (there were age issues).  With donor swaps becoming more common you could donate to your daughter that way in a four person arrangement.  There is another post on this site describing a swap that took place recently. Talk to your transplant center for more information about that.  There are numerous options available, please don't reject a cadaveric kidney.

[okarol]

Hi Livecam--
Sorry, not sure how I gave the impression we would reject a cadaveric kidney! That's not the case at all!
According to the nephrologist at USC, a zero antigen match living kidney is much better than a 6 of 6
cadaveric kidney. Statistically, the life expectancy of a kidney from a living donor is longer than that
of a cadaveric kidney. And since Jenna is only 20 years old it's possible that she will need numerous
transplants throughout her life, so the doctors have encouraged us to find a living donor.

Jenna has been wait listed nearly 3 years, since she began dialysis. The wait time here in Los Angeles is
5 to 7 years, so we multiple listed her a year ago in San Diego and San Francisco. She actually
switched her primary wait time to San Diego because their wait list is 3 to 5 years. We are ready and willing
if she gets a call, but in the meantime I am praying that if a living donor is meant to come forward, it
will happen.

I know there are risks for the living donor. I originally hoped I could donate to Jenna. I have been a
member on the livingdonorsonline.org forum for a long time and have learned a lot. I have 2 sisters and a
brother with Polycystic Kidney Disease and I pray I can donate to one of them when needed. Of course
surgery always brings risks, but they are small and the result is well worth it to me, and to a lot of other
people. It's your right to turn down a living donor, but please don't judge others who want to accept the gift.

Unfortunately, of the 3 hospitals Jenna is listed at, none of them do living kidney swaps at the present time.
The only hospital doing swaps on the west coast is Seattle Swedish, and their first was last week!
It will take some time to expand their program but they are doing it! The idea of going to Johns Hopkins
or anywhere in the east is daunting as I have a disabled husband and 3 younger kids to take care of. But
if necessary we will do it. The problem with that is that I am A blood type and she is O. Most O type
donors don't need to swap as they can donate to their A. So unless there's a unique set of circumstances
it is unlikely we would find a pair to match with.

We have also explored AB non-matching, but I do not have the right blood titer for Jenna. And the docs
feel that the long term results are not in on plasmapheresis and they would not recommend it for her now.

Thanks for your post - but I don't believe there are as many options as you may think.
~Karol

[Rerun]

On this site we speak our mind - that is not judging. 

Twenty years ago the only transplants that were done were cadaveric and living related - that meant my husband could not donate to me; only mother/father/sister/brother.  So, things change and improve.  They will be doing swaps everywhere soon.  It just takes a while to accept new things.

This is the introduction section.  Let's take this topic elsewhere.   

[okarol]

Sorry, I thought I was speaking my mind, too.
 

[livecam]

Karol, a donor swap with you as the donor might not necessarily take place at a center where you are listed.  If suitable arrangements could be made it might involve a facility chosen by the other donor/recipient pair elsewhere in the country.  A four way arrangement with you as one of the two donors would certainly solve your dilemna quite nicely and obviate the need for you to find a willing donor. 

[jedimaster]

. I hope this place helps you to get informed and to learn from other people's experiences. I'm all for transplants, but where I live the waiting list is 8 years looooooong. No family to get a donor from (I should have verified their blood type before marrying..... ). I'm aiming to nocturnal dialysis which seems to be a good option. But, I strongly believe this is a great place not only to vent but to learn and share.

[okarol]

Thank you jedi-
Where do you live?
I know some people may think dialysis is a breeze -
but I have a lot of empathy for anyone that does it.
Take care,
Karol

[jedimaster]

It is not a walk in the park, believe me...it has taken over my life. I wake up thinking dialysis and go to sleep with the same though. Aiming to do nocturnal as I'm in Canada where we are starting a nocturnal program....but so far I do it every day 4 hours during the day, plus set up and clean up....adds to 6 hours a day.... a full time job

[kitkatz]

    

Bumping Okarol's introduction. She is our new admin after all! Things have changed for her and Jenna. Jenna got a transplant almost a year ago!

[paris]

Good idea, Kitkatz.  Amazing how much has changed in their lives since Okarol became a member.  It is good to go back and learn the history of a member--now administrator.  Congrats Okarol.  We are so lucky to have you.   

[annabanana]

 

[okarol]

A lot has happened since I first introduced myself.
Here are a couple of related threads if you hadn't already seen them:

http://ihatedialysis.com/forum/index.php?topic=2167.0 Hey - here's my story - A test of faith in strangers
http://ihatedialysis.com/forum/index.php?topic=1721.0 Here's some WONDERFUL news!!!
http://ihatedialysis.com/forum/index.php?topic=2675.0 Losing a kidney, gaining family (This is Jenna's donor!)

Now you know ALMOST everything! 

[Sluff]

A lot has happened since I first introduced myself.
Here are a couple of related threads if you hadn't already seen them:

http://ihatedialysis.com/forum/index.php?topic=2167.0 Hey - here's my story - A test of faith in strangers
http://ihatedialysis.com/forum/index.php?topic=1721.0 Here's some WONDERFUL news!!!
http://ihatedialysis.com/forum/index.php?topic=2675.0 Losing a kidney, gaining family (This is Jenna's donor!)

Now you know ALMOST everything! 

Almost!    

[KT0930]

  to our new admin! Woo hoo!