Carol got a dual transplant

[Diane Smith]

Hi Diane,
Just wanted to share my wonderful news. I received a liver and kidney transplant on May 26,2012. They are both working great. I was in the hospital 9 days and out one week when I developed horrible pain in my right side and back so back to the hospital I went. After 4 nights and some tests it turned out to be my native kidney causing the problems. A few cysts had ruptured and were causing all the pain. So now I am out and on the mend once again. My surgury was done at the Mayo in Rochester. What a terrific place. My liver was 13 lbs and they removed 7 liters of fluid also. Talk about sudden weight lose.
Thank you for this great group it sure helped me with my PKD/PLD. I would never had learned about Dr. Torres or this wonderful Mayo Clinic.
Carol

[Ruth Dejam]

Congratulations, Carol.  Continued good health!  Enjoy your new life!
~Ruth

---

From: Diane Smith <smith...@me.com>
To: PKDiet Bridge <pkd...@googlegroups.com>; Polycystic Liver Disease Google Disease Google <polycysticl...@googlegroups.com>
Sent: Sunday, June 17, 2012 3:16 PM
Subject: [Polycystic Kidney Disease PKDiet] Carol got a dual transplant

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[statts]

how can you tell with your spilling protein what does the urine look like i mean is it all bubbles?

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[Ruth Dejam]

Hi Rob!

 

You have to check your urine.  It's a dipstick test.

Hope everything is going good for you.

 

~Ruth

From: statts <sta...@comcast.net>
To: pkd...@googlegroups.com
Sent: Sunday, June 17, 2012 10:24 PM
Subject: Re: [Polycystic Kidney Disease PKDiet] Carol got a dual transplant

how can you tell with your spilling protein what does the urine look like i mean is it all bubbles?

----- Original Message -----

From: Ruth Dejam

To: pkd...@googlegroups.com

Sent: Sunday, June 17, 2012 4:46 PM

Subject: Re: [Polycystic Kidney Disease PKDiet] Carol got a dual transplant

Congratulations, Carol.  Continued good health!  Enjoy your new life!
~Ruth

From: Diane Smith <smith...@me.com>
To: PKDiet Bridge <pkd...@googlegroups.com>; Polycystic Liver Disease Google Disease Google <polycysticl...@googlegroups.com>
Sent: Sunday, June 17, 2012 3:16 PM
Subject: [Polycystic Kidney Disease PKDiet] Carol got a dual transplant

Hi Diane,
Just wanted to share my wonderful news. I received a liver and kidney transplant on May 26,2012. They are both working great. I was in the hospital 9 days and out one week when I developed horrible pain in my right side and back so back to the hospital I went. After 4 nights and some tests it turned out to be my native kidney causing the problems. A few cysts had ruptured and were causing all the pain. So now I am out and on the mend once again. My surgury was done at the Mayo in Rochester. What a terrific place. My liver was 13 lbs and they removed 7 liters of fluid also. Talk about sudden weight lose.
Thank you for this great group it sure helped me with my PKD/PLD. I would never had learned about Dr. Torres or this wonderful Mayo Clinic.
Carol

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[Diane Smith]

I have a web page:

http://www.pkdiet.com/alkalizersproteinuria.php

MONITORING proteinuria

~Diane

[Diane Smith]

Ruth I have forwarded your message to Carol. I don't know how she did it, but she did it!

~Diane

[Michael Anthony]

May I add my own congratulations to everyone's as well. Well done ol' bean!

All the best 

Michael

Cavalier de l'iPad :

Michael Anthony, une incorporation corporelle, partager une vie, avec vous, vivant et de l'apprentissage !

2012

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[Diane Smith]

I went through computer withdrawal. I could not hold out. I bought an eleven inch Macbook Air, light as an iPad. The new apple computers do not have firewire ports. There will be a converter plug that goes from firewire to thunderbolt for external hard drives but it won't be out until the fall.

I found out that with the iPad and iPhone I can communicate. I can update my website but it wasn't until I got the computer that my creative juices began flowing again. I have 14 days to return this computer if I decide it does not suit my needs and hopefully by then my macbook pro will arrive.

~Diane  

[Karen Glenn]

Hello, everyone,

I was shocked to read an article in the New York Times about a healthy
man who
had been denied health insurance because he had donated a kidney to his
daughter.
I think that we should all write letters to our Senators and
Representatives asking
them to ban insurers from denying insurance to people just because they
donated
a kidney. Apparently it is a problem for a number of kidney donors and
fear of
losing insurance can obviously be a deterrent to kidney donation.

Here is the letter I sent if anyone wants to adapt it. Thanks for
considering doing
this. It is very important.

Dear Senator Bennett,

I need a kidney. I have polycystic kidneys, a hereditary disease, and I
have reached the point where I am being considered for transplant. It
is medically well-known that live-donor kidneys produce the best
result, while avoiding the costs (both financial and healthwise) of
dialysis. I was very upset to find this article in the New York Times
(well.blogs.nytimes.com/2012/06/11/the-reward-for-donating-a-kidney-no-he
alth-insurance/?ref=health) about kidney donors being denied health
insurance. This is not only a terrible way to treat donors, it
actively discourages kidney donation. I have already been told by one
of my potential donors that she can not give me a kidney because of
this potential problem. I am afraid to ask my nieces because I do not
want them to face a future of precarious health insurance. I am asking
you to sponsor legislation that will ban health insurers from rejecting
kidney donors on that basis. This would not only encourage kidney
donation and protect donors, it would save the lives of many of those
who die waiting on the national list for cadaver donors. Furthermore,
encouraging kidney donation in this way would save the federal
government millions of dollars that it spends on dialysis.
Thank you for taking time to consider my concerns.

Karen Glenn

-----Original Message-----
From: Diane Smith <smith...@me.com>

[Diane Smith]

This is outrageous!

[Karen Glenn]

In addition to writing your Senators and Representatives,
you can also sign this petitition:

Please visit this link and sign. Thank you!!! Also please circulate
it to your friends!
http://www.thepetitionsite.com/105/409/951/ensure-health-insurance-for-kidney-donors/

Target: President Barack Obama
Sponsored by: Karen Glenn
A recent New York Times article discussed the case of a healthy man who
was denied health insurance because he donated a kidney to his
daughter. Denying kidney donors health insurance
1) hurts them and leaves them at risk and
2) actively discourages live-kidney donation, which is medically much
superior to both dialysis and cadaver donation, the only alternatives.
While the majority of health insurers do not do this, it is still
enough of a problem to
discourage donation. Meanwhile maintaining people on dialysis (many of
whom will die
while waiting for cadaver organs) costs the government millions of
dollars.
Let's ban insurers from denying coverage to kidney donors.. Then we
will help kidney donors
AND kidney recipients while saving the federal government money.

[Diane]

Everyone thank you for your kind words and support for Carol and her
dual transplant. I forwarded her all your messages. Here is a quick
note from Carol.
~Diane


FROM Carol: My meld score was 29. This number also had to do with my
kidney function. My organs came from a deceased donor. They needed to
both come from the same donor less chance of rejection that way.
Yesterday they removed 92 staples. Feels much better having them out.
Thanks for all your kind words. It means alot.
Carol

[Ruth Dejam]

My sister-in-law donated a kidney to my brother August 1, 2011 and we are still fighting their insurance company who don't want to pay for her surgery because they say it was elective.

Everyone who wants to have a healthy kidney removed, raise your hand!  Ugh!!!

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[Diane Smith]

Dear Ruth,

Do you happen to live near Johns Hopkins University? Dr. Robert Montgomery was successful in getting medicare to pay for both the donor and recipients of  his donor exchange program. It is still outrageous that insurance would not pay. The then president visited Johns Hopkins and he asked Dr. Montgomery if there was anything he could do? Dr. Montgomery said by the way yes. Can you help us get paid by medicare? It was one of the first donor exchange programs to get reimbursed by medicare. Johns Hopkins worked with the government  lawyers and had the coding written so reimbursement was possible.

Right now I am trying to get help with octreotide injections. The cost is $3000/injection. I have cut my injection down to one, usually it is two. My insurance will cover all but $500 but I have to pay upfront for the medication. So I am debating.

~Diane

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[Ruth Dejam]

They live in NJ and it's private health insurance.  They're getting help from a local TV station consumer advocate now so hopefully it will get reconciled before the 1st anniversary of the transplant,  From the get-go, they were told they'd have to be persistent.  It's just stupid (sorry but I can't think of a better word).

[Diane Smith]

Wow, this is just incredible. I cannot think of a worse situation to be ill and have to fight to get reimbursement from insurance.

~Diane

[Karen Glenn]

Yes. This is why we need to try to do something about it!

-----Original Message-----
From: Diane Smith <smith...@me.com>
To: pkdiet <pkd...@googlegroups.com>

Sent: Tue, Jun 19, 2012 12:12 pm
Subject: Re: [Polycystic Kidney Disease PKDiet] Health Insurance for
Kidney Donors

group at http://groups.google.com/group/pkdiet?hl=en.> -- You received

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[Karen Glenn]

I'm a big confused because usually the recipient's insurance pays for
the donor's surgery . . .

[Ruth Dejam]

You are correct, Karen.  In their case, my brother (recipient) and sister-in-law (donor) are both on my sister-in-laws policy. 

One hand doesn't know what the other is doing.  That, coupled with the fact that they are scum-sucking insurance companies who are only out to make a buck.

but I digress....

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[Dr. K]

here is an up lifting story.  I was having a tough day today then read this, even though he does not have PKD, his kidney transplant story is still something else.

http://gma.yahoo.com/man-kidney-disease-finds-perfect-match-bride-150429183--abc-news-wellness.html

 

A MESSAGE FROM THE DESK OF Dr. K

---

[Karen Glenn]

It is heartwarming but would be much less so if after her generous gift
of love she could no longer get health insurance!
Yet many kidney donors are denied health insurance later as was a
healthy man profiled in the New York Times
who gave a kidney to his daughter. Please sign my petition that bans
insurers from this practice at
http://www.thepetitionsite.com/105/409/951/ensure-health-insurance-for-kidney-donors/

Thanks. This is real and important. A potential donor recently told me
that she could not give me a kidney because of these health insurance
issues.

Karen

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[Diane]

Dear Carol,
How are you doing with your dual transplant? Are there any issues? I
have heard some tell that eyes can be bothersome and salt intake has
to be zero, and bones can also present some issues.

Warmly,
Diane

On Jun 17, 9:16 am, Diane Smith <smithdi...@me.com> wrote:

[cristina clark]

It is wonderful to hear from you.  I now have some hope of what to do about my PKD andPLD when I have problems.in the future. For now I am just limiting salt and protein.

[Diane Smith]

Glad to hear you are managing.

Warmly,
Diane