I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
November 26, 2020, 09:39:32 AM

Login with username, password and session length
Search:     Advanced search
530684 Posts in 33426 Topics by 12427 Members
Latest Member: Needakidney
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Dialysis Discussion
| |-+  Dialysis: Transplant Discussion (Moderator: KarenInWA)
| | |-+  My Journey
0 Members and 1 Guest are viewing this topic. « previous next »
Pages: 1 2 [3] 4 Go Down Print
Author Topic: My Journey  (Read 17366 times)
tyefly
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2016


This will be me...... Next spring.... I earned it.

« Reply #50 on: January 28, 2011, 07:05:10 PM »

Good for you Marc......   it only took me three months....  that was a year ago....     I hope you get on soon....
Logged

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
okarol
Member for Life
******
Offline Offline

Gender: Female
Posts: 100888


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #51 on: January 29, 2011, 11:23:11 PM »


Great - keep moving forward.  :cuddle;
Logged


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
RichardMEL
Member for Life
******
Offline Offline

Gender: Male
Posts: 6154


« Reply #52 on: January 30, 2011, 07:00:44 PM »

I didn't think you COULD designate an organ to a specific person.....
Logged



3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
YLGuy
Elite Member
*****
Offline Offline

Gender: Male
Posts: 4901

« Reply #53 on: January 31, 2011, 08:36:10 AM »

You can here.
Logged
Poppylicious
Elite Member
*****
Offline Offline

Gender: Female
Posts: 3023


WWW
« Reply #54 on: January 31, 2011, 08:56:47 AM »

I didn't think you COULD designate an organ to a specific person.....
You can here.
We can't in the UK (I think, although I'm happy to be proven wrong.)  We are SO behind the times! *sigh*

Hope it all keeps going in the right direction Marc.

 ;D
Logged

- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
Des
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2318


« Reply #55 on: February 13, 2011, 10:06:13 PM »

Marc, this is so cool.

How far is everything now? Keep me posted.  :bandance; :bandance; :bandance;
Logged

Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
okarol
Member for Life
******
Offline Offline

Gender: Female
Posts: 100888


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #56 on: February 14, 2011, 12:34:05 AM »

I didn't think you COULD designate an organ to a specific person.....

Singer Natalie Cole got her kidney from a deceased donor whose family directed it to her.
Also happened for a facebook friend - Becky  - http://ihatedialysis.com/forum/index.php?topic=21968.0
Logged


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
Elite Member
*****
Offline Offline

Gender: Male
Posts: 4901

« Reply #57 on: June 23, 2011, 11:13:03 PM »

Update:
A while back I had a turn of events but can only write about it now.  okarol posted an article that discussed the fact that donors may be denied health coverage.  I, of course forwarded the article to my donor and her husband.  We then had a meeting with the transplant social worker to discuss it.  She told us that yes it was true.  We also discussed the fact that if you have your insurance through an employer that is small that it could increase your premiums.  Well, my buddy owns his own company and it is a small company so he had a very real concern that his insurance would increase.  A mutual friend is his agent that he carries his health insurance through and our mutual friend could not let him know if the premiums would increase if his wife gave me a kidney. 

I mentioned the 7 year wait and the social worker said that it was 7 years when my kidneys failed but now type O blood in SoCal was now a 8-10 year wait. the fact that I agreed to an extended criteria kidney could maybe cut that wait time in half. 
So that is that.  I will wait and pray that I will beat the odds. My kids need me. I so want to walk my daughter down the isle and be a grandpa some day.
Logged
rsudock
Elite Member
*****
Offline Offline

Gender: Female
Posts: 1351


will of the healthy makes up the fate of the sick.

« Reply #58 on: June 23, 2011, 11:33:53 PM »

What about your son is he still following through with the testing?

That's what I hate about America and being chronically ill...insurance!! blah!!! Won't be happy until we are all dead!!!

Keep the faith Marc!

xo,
R
Logged

Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
Jean
Member for Life
******
Offline Offline

Gender: Female
Posts: 6114


« Reply #59 on: June 23, 2011, 11:49:58 PM »

I hate insurance companies!!! They make enough money, they dont need to raise rates just because you dared to us the insurance. Keep you chin up Marc, I just know something good is coming up for you.
Logged

One day at a time, thats all I can do.
Des
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2318


« Reply #60 on: June 23, 2011, 11:51:24 PM »

Marc,

I am so sorry to hear about your troubles. Just know that I am thinking of you.  :grouphug;
Logged

Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
YLGuy
Elite Member
*****
Offline Offline

Gender: Male
Posts: 4901

« Reply #61 on: June 24, 2011, 12:08:22 AM »

What about your son is he still following through with the testing?

That's what I hate about America and being chronically ill...insurance!! blah!!! Won't be happy until we are all dead!!!

Keep the faith Marc!

xo,
R

I can't. I just can't.
Logged
willowtreewren
Member for Life
******
Offline Offline

Gender: Female
Posts: 6928


My two beautifull granddaughters

WWW
« Reply #62 on: June 24, 2011, 06:16:43 AM »

Marc,

All I can say is that I wish the insurance industry in this country were not so screwed up. This sucks big time.  :thumbdown;

I'm sorry.  :'(

Thinking of you.

Aleta
Logged

Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
okarol
Member for Life
******
Offline Offline

Gender: Female
Posts: 100888


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #63 on: June 24, 2011, 10:35:28 AM »

Update:
A while back I had a turn of events but can only write about it now.  okarol posted an article that discussed the fact that donors may be denied health coverage.  I, of course forwarded the article to my donor and her husband.  We then had a meeting with the transplant social worker to discuss it.  She told us that yes it was true.  We also discussed the fact that if you have your insurance through an employer that is small that it could increase your premiums.  Well, my buddy owns his own company and it is a small company so he had a very real concern that his insurance would increase.  A mutual friend is his agent that he carries his health insurance through and our mutual friend could not let him know if the premiums would increase if his wife gave me a kidney. 

I mentioned the 7 year wait and the social worker said that it was 7 years when my kidneys failed but now type O blood in SoCal was now a 8-10 year wait. the fact that I agreed to an extended criteria kidney could maybe cut that wait time in half. 
So that is that.  I will wait and pray that I will beat the odds. My kids need me. I so want to walk my daughter down the isle and be a grandpa some day.

I know groups are working on this problem, but it's actually pretty a rare event. Some insurance companies believe that donors are considered to have a "pre-existing condition" due to donating, meaning a waiting period or increase in premiums. This is incorrect. The donors go through a battery of tests to ensure that they will not be harmed or disadvantaged by donating a kidney. The admins at Living Donors Online have helped other donors overcome this obstacle with their insurance plans and are available to help anyone who has the same issue.
You were a good friend to let your possible donor know about this issue. I will keep you updated as I find out more.
It's true, the wait in Los Angeles area is now 10 years for O blood type. That's why a living donor is essential. Don't give up Marc, there is someone out there to help you. You need to get your story out in a broader range of people and your donor will find you. I am happy to help however I can.
 :cuddle;
Logged


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
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11038


« Reply #64 on: June 24, 2011, 01:47:34 PM »

Wait a minute; I'm confused.  Marc, is everyone concerned CERTAIN that your buddy's insurance premiums would be affected if his wife donated?  There seems to be rather a lot of assumptions and maybes in your post.  Can someone call the insurance company and find out for sure?  I find it difficult to believe that his insurance agent doesn't know the answer to this.  At the very least, the agent should find the hell out!  An insurance agent is selling a product (an insurance policy), so it is his duty to know all about said product.

I'm sorry if I am missing part of the story here, but it seems to me that someone should be getting some definite answers, preferably committed to paper!
Logged

"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."
YLGuy
Elite Member
*****
Offline Offline

Gender: Male
Posts: 4901

« Reply #65 on: June 24, 2011, 03:54:04 PM »

Our mutual friend, the agent could not say.  I know him VERY well.  He offered to let my oldest son live with him when I was hospitalized.  I also know that he knows his products inside and out.  He can not speak for the underwriters of the policies nor would the underwriters state either way.  Part of the issue is that my donor is covered under a policy for a company with less than 10 employees.  If he worked for a large company this would not be such an issue. 
Logged
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11038


« Reply #66 on: June 24, 2011, 04:09:39 PM »

Our mutual friend, the agent could not say.  I know him VERY well.  He offered to let my oldest son live with him when I was hospitalized.  I also know that he knows his products inside and out.  He can not speak for the underwriters of the policies nor would the underwriters state either way.  Part of the issue is that my donor is covered under a policy for a company with less than 10 employees.  If he worked for a large company this would not be such an issue.

OK, so the problem is not the agent but is the underwriters.  Why won't the underwriters state what they will cover and what they exclude?  An insurance policy is not supposed to be a mystery.  I personally would be very worried if I was unable to find out what my policy covered and what it did not, and I certainly would balk at paying money for insurance whose exclusions weren't very apparent.

What exactly is the difference in coverage/benefits and exclusions between those offered to a larger company and those offered to a smaller company?

I just still find it very hard to believe that your friend cannot approach his insurance company, IN WRITING, and say, "My wife is considering donating a kidney.  Please outline how/if this would affect our coverage under policy number blah blah held by The Blah Blah Company."

What if your buddy's wife were to lose a kidney because of cancer or injury?  Would his policy respond to THAT?
Logged

"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."
YLGuy
Elite Member
*****
Offline Offline

Gender: Male
Posts: 4901

« Reply #67 on: July 21, 2011, 06:04:42 PM »

The transplant hospital called me today to confirm that I do not have any living donor prospects.  I confirmed this and then asked if their policies were the same.  If I were to find an altruistic donor they would not do the transplant as they have very strict rules that I must have an emotional connection to the donor.  She said that was correct.  I then asked if they were any further on doing any chains.  She said that there was one more hurdle and hopefully by the end of the year they may be closer to possibly doing chain donations.  I said then no, I do not have any possible living donors at this time.  She said she would be contacting me at the beginning of next year to set up the doctor appointments to keep me on the list.
Just the phone call I needed.  I am having one of the hardest times since my kidney failure.
Logged
jbeany
Member for Life
******
Offline Offline

Gender: Female
Posts: 7536


Cattitude

« Reply #68 on: July 21, 2011, 06:12:40 PM »

 :grouphug; :grouphug; :grouphug;
Logged

"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

cariad
Elite Member
*****
Offline Offline

Gender: Female
Posts: 4208


What's past is prologue

« Reply #69 on: July 21, 2011, 06:49:32 PM »

I am sorry to hear this, Marc.

All I can think is to explore other options - a different hospital, or maybe train for NxStage? I know it requires commitment from a partner, but as you already self-cannulate, maybe you would consider asking your older son or a friend to train with you? You would be doing it yourself, and just need them as backup in case of emergency.

Heartbreaking to read of you struggling. I can see how that phone call would only bring your mood lower. Not helpful. :grouphug;
Logged

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
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11038


« Reply #70 on: July 21, 2011, 07:07:27 PM »

So, who gets to decide the validity or the quality of any "emotional attachment" that you may have with an altruistic donor?  If a stranger walked up to me tomorrow and said, "MooseMom, I heard you need a kidney, and I'd like to offer you one of mine," you bet I'd get pretty emotionally attached to that angel pretty damn quickly.

I thought that potential donors have to go through a lot of hoops, including a psych evaluation.  If that's the case, then wouldn't they be able to suss out if your altruistic donor was somehow manipulating you?  And are they so damn sure that someone to whom you have an "emotional attachment" comes without psychological blackmail?

Seriously, this pisses me off.  Who are these people to deny you treatment based upon their assessment of how someone feels about you or how you feel about him/her?  That's just ludicrous.  Just because their rules are "strict" doesn't mean they aren't cruel and stupid.
Logged

"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."
YLGuy
Elite Member
*****
Offline Offline

Gender: Male
Posts: 4901

« Reply #71 on: July 21, 2011, 07:40:44 PM »

They are worried that I would be paying them for a kidney. lol I have $8 in my checking account and no savings.
Logged
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11038


« Reply #72 on: July 21, 2011, 09:22:36 PM »

They are worried that I would be paying them for a kidney. lol I have $8 in my checking account and no savings.

What, and they assume that you couldn't possibly pay a family member enough for a vacation to the Bahamas?  Look, I understand that centers have to have rules for ethical reasons, but they shouldn't be just random crap they make up and make you follow just because they have you by the short and curlies.  For them to make the fundamental assumption that someone to whom you have some emotional attachment would be a better/ethically safer donor than a relative stranger is just flat out wrong.  There are people on IHD who I have never met that I have deeper feelings for than for most members of my own family.

I would think seriously about going ahead and trying to find an altruistic donor, or just change centers like cariad suggested.  If you can't change centers, find a donor and THEN worry about getting them approved.
Logged

"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."
okarol
Member for Life
******
Offline Offline

Gender: Female
Posts: 100888


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #73 on: July 22, 2011, 09:47:26 AM »

Can you change hospitals?
Logged


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
Poppylicious
Elite Member
*****
Offline Offline

Gender: Female
Posts: 3023


WWW
« Reply #74 on: July 22, 2011, 01:46:35 PM »

*huggles*

I realise I'm a bit late (a whole month!) but going back to the insurance premiums; why do they increase? Surely in an ideal world they should decrease?  Someone who donates has to go through SO MANY hoops to prove their health, both physically and mentally. 

If the altrusitic donor issue is only with one hospital/centre then can you change centres?  How many places can you be listed with? I really hope that something comes up soon for you.

*huggles* again (because you can never have too many, even if they are ineffectual.)
Logged

- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
Pages: 1 2 [3] 4 Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.17 | SMF © 2019, Simple Machines | Terms and Policies Valid XHTML 1.0! Valid CSS!