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Author Topic: My Journey  (Read 17368 times)
tyefly
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This will be me...... Next spring.... I earned it.

« Reply #25 on: February 24, 2010, 03:28:06 PM »

 :yahoo;     :yahoo;      :yahoo;       And let the journey begin
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
YLGuy
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« Reply #26 on: February 24, 2010, 05:49:28 PM »

I was completely wrong about the lab work.  They are sending it to UCLA to crossmatch???
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Jean
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« Reply #27 on: February 24, 2010, 06:54:06 PM »

Either way, Super Dooper!!!!!!! Best of luck Marc.
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One day at a time, thats all I can do.
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #28 on: February 24, 2010, 08:46:48 PM »

 :yahoo; Good to make progress!!
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
cariad
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What's past is prologue

« Reply #29 on: February 26, 2010, 06:09:14 PM »

Sounds great, Marc!
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
monrein
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Might as well smile

« Reply #30 on: February 27, 2010, 05:08:16 AM »

Every little forward movement in the process is cause for celebration.    :cuddle;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
YLGuy
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« Reply #31 on: April 25, 2010, 12:32:41 PM »

Okay, here we go.  I was working at the registration for Pop Warner this week.  My buddy's wife came in with her boys to register her son Cory (he is on my son's team).  I went over to say hello.  I had just been camping with the boys last weekend with the Indian Guides.  Cory is also in my son's tribe.  She was like isn't the news from St. Jo's great?  I had no idea...she had gone and had blood drawn to be tested.  She had offered awhile back and thanked her very much and told her that I would never bring it up in a conversation.  If she waned to tell me as she went along that would be great but her just even thinking about giving me a kidney was more wonderful than any words could describe.  I did not want to ask just in case she backed out at any point.  I do not want her to feel weird about it.  Their family has been very good to my family over the years.  So I believe they are testing the antigens now?
It just so happened that I brought my 18 year old son to the transplant center on Thursday.  He had his blood drawn too.  He informed me that at a minimum 3 antigens would match because you get half from each parent.  One of the things that I have definitely learned from IHD is although this is a very good thing, you don't count your kidneys until they are in your body producing urine. 
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okarol
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« Reply #32 on: April 25, 2010, 06:15:18 PM »

One of the things that I have definitely learned from IHD is although this is a very good thing, you don't count your kidneys until they are in your body producing urine.

 :clap; Ain't it the truth?!?

It's really heartwarming to know that someone wants to be tested, it gives you hope.
Best wishes to them - whatever the outcome - they are very special folks.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Jean
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« Reply #33 on: April 25, 2010, 10:44:29 PM »

Marc, that is the best news ever!!!!!!!  :thumbup;
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YLGuy
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« Reply #34 on: May 11, 2010, 04:25:38 PM »

I was laying down to rest yesterday when my oldest son came in my room jumped on my bed gave me a kiss on the head and in an excited voice told me that he was a match.  So many different feelings.  First I am very proud that I have raised such a loving caring young man that he would consider doing something like this for his dad.  I know that he is a giving person as he has donated blood since he was 16 and is in the bone marrow bank to donate.  I am very scared that they will test him and he will come through with flying colors and want to proceed with the donation.  It is a weird feeling being cared about so much by not only him but also by Marissa (my friends wife) that they are willing to go through a pretty major operation and give up a body part for you.  Humbling might be a good word.  I do not want to put the cart before the horse so I will try not to worry about something that may never happen and just be thankful for my blessings. 
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Jean
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« Reply #35 on: May 12, 2010, 12:24:40 AM »

Marc, you are so blessed. I am happy for you. Just dont you dare have your transpland on June 5th. Altho, I guess I would forgive you for something like this. Yes, I am sure I would.
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One day at a time, thats all I can do.
cariad
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What's past is prologue

« Reply #36 on: May 12, 2010, 12:00:23 PM »

What wonderful friends and family you have, Marc. But you're absolutely right to not worry about anything until it actually happens. In the end, as difficult as it may be to explain to your son, both recipient and donor have to be comfortable with the transplant. I hope he does pass the eval, because that speaks to his good health, but I also hope that you get the transplant that you want, and that your son will understand if you go a different route. Good luck.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #37 on: May 12, 2010, 01:30:31 PM »

 :grouphug; I love that your son and friend are willing, and I understand there are mixed feeling because it's hard to imagine another person undergoing surgery to help you. Jenna's younger sister (19) said she wants to get tested to donate to Jenna. It's tough to imagine them both in surgery. But, as was said, no need to fret or worry as it is not happening now. xoxox
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
monrein
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Might as well smile

« Reply #38 on: May 12, 2010, 01:54:41 PM »

Caring fathers who raise caring sons are gifts to the world and of course you worry.  What a lovely moment though.   :grouphug;
Logged

Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
YLGuy
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« Reply #39 on: July 09, 2010, 06:57:59 PM »

I got a call today from a friend of mine.  He coaches soccer.  His assistant coach that is my age has been in a coma.  My friend got a call that it does not look like his friend will live that much longer.  He told me that he is thinking about approaching the family and ask them if they would consider organ donation and if so would they be willing to designate a kidney for me.  He asked me to call my transplant center and ask them what would need to be done.  They said that the family would have to tell the attending nurses and that would start the ball rolling.  I have no idea what blood type he is, if he even has viable organs and most importantly if his family would consider it.  I will of course keep you posted.
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paris
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« Reply #40 on: July 09, 2010, 07:37:58 PM »

How amazing that your friends are thinking of you so much.  Any time someone tries to help is a wonderful moment.  This would be wonderful.  I'll keep the asst coach and family in my prayers.  They have a hard time ahead of them.    :pray;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
YLGuy
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« Reply #41 on: July 09, 2010, 07:49:50 PM »

This situation is so sad.  I am very upset.  I cannot help but to think about his family.  Thank you for the prayers for him and his family. 
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okarol
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« Reply #42 on: July 09, 2010, 08:50:34 PM »


Very sad indeed. I too have said a prayer for the family.
That your friend thought of you is heart warming, amongst the tragedy, a glimmer of light.
A couple from our church called in a similar situation when Jenna was waiting, asking to donate their aunt's organs to Jenna, if possible.
It didn't work out but it touched us so much that a family could reach out beyond their grief.
 :grouphug;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Jean
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« Reply #43 on: July 09, 2010, 11:51:56 PM »

Marc, I so pray that this works out for you. Sorry for the young man and his family, but hope they decide to donate.
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One day at a time, thats all I can do.
cariad
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What's past is prologue

« Reply #44 on: July 10, 2010, 10:50:43 AM »

Marc, of course I am devastated for the donor's family, and I can imagine this is all so confusing and overwhelming for you. If there really is no hope for the assistant coach, then you know I am hoping that this is it for you and you can say goodbye to dialysis.

My thoughts are with you and the donor and his friends and family. :cuddle;
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
YLGuy
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« Reply #45 on: July 15, 2010, 05:30:29 PM »

My buddy called me.  His friend passed away.  He told me that he had tried to contact his wife but was unable to prior to the passing. 
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #46 on: July 15, 2010, 09:26:14 PM »

 :grouphug;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
YLGuy
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« Reply #47 on: January 26, 2011, 05:38:51 PM »

Well, it has been a long time but I have an update.  I just went through 7 hours of doctor appointments.  They have approved me to stay on the list.  We also discussed and I agreed to accept an extended criteria donor kidney.  I have to set up a meeting between one of the living donors, her husband, me and my children and the social worker.  She wants to move things along and try to set up a transplant for this summer. 

One thing I asked about was if the nurse could tell if I had a transfusion when I was in the hospital when my kidneys originally failed.  She said that it very much looked like I had as I had a number of CW antibodies.  I was really out of it on morphine when I was in the hospital and remember them talking about a transfusion but was not sure if they did it.  The good thing is that they tested my possible donor and we are still a go...so far.  I certainly do not want to get my hopes up too high. 
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Jean
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« Reply #48 on: January 27, 2011, 12:52:31 AM »

this is wonderful news Marc. I hope you have one of your kids trained to let us know when it happens. Notice I said when, not if.    :cuddle;
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MooseMom
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« Reply #49 on: January 27, 2011, 12:30:29 PM »

I really hope everything goes well for you.  You will keep us updated, right?!  I'll be thinking of you.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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