I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
September 25, 2017, 05:16:15 PM

Login with username, password and session length
Search:     Advanced search
515043 Posts in 32159 Topics by 11648 Members
Latest Member: iganepro
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Dialysis Discussion
| |-+  Dialysis: Transplant Discussion (Moderator: KarenInWA)
| | |-+  GETTING ON THE LIST
0 Members and 1 Guest are viewing this topic. « previous next »
Pages: [1] Go Down Print
Author Topic: GETTING ON THE LIST  (Read 5880 times)
okarol
Global Moderator/Premium Member
Member for Life
*
Offline Offline

Gender: Female
Posts: 100845


Photo is Jenna - after Disneyland - 1988

WWW
« on: December 18, 2010, 05:44:46 PM »

GETTING ON THE LIST

Before you’re listed
Once you and your nephrologist decide that a kidney transplant is right for you, your name will be placed on the United Network for Organ Sharing (UNOS) national transplant waiting list. In order to do this, your transplant team will need to perform a series of medical tests, which may include:

Kidney function tests such as glomerular filtration rate (GFR)
Physical exam with routine laboratory tests
Medical, family, and social histories
Compatibility testing, which provides your transplant team important information that can help make sure you and your donor match:
Blood type (A/B/O) and Human leukocyte antigens (HLA) or tissue type testing
Panel reactive antibodies (PRA) may also be measured to determine the presence of antibodies in your blood that may react to a transplant
Viral testing to check for active infections, such as hepatitis C (HCV), Epstein-Barr virus (EBV), or human immunodeficiency virus (HIV)
24-hour urine tests
Imaging tests such as an ultrasound, may also be conducted. Such testing helps your doctors visualize the amount of disease in your damaged kidney.

Depending upon your health and medical history and the requirements of your transplant center, more tests may also be necessary. Your transplant coordinator can help you better understand all of the tests you will need before you become a waiting list candidate.

Because waiting times can range from weeks to years, some tests will need to be performed several times to make sure your status on the list is kept up to date.

Steps to take for placement on the UNOS transplant waiting list
Choose a transplant hospital: you may be able to choose your own center (self-refer) or you can ask your physician for a referral
Choose a transplant hospital that meets your needs (financial, geographical, and experience with the type of transplant you need): review the UNOS website for information on different transplant programs across the country to help you narrow your choices
Schedule an appointment at the transplant hospital of your choice
Get the information you need by asking key questions
When your doctor determines that you are an appropriate transplant candidate, your transplant team will add you to the national waiting list and notify you of your waiting list status
Do not assume that your name is on the waiting list; make sure you get a letter from your transplant center confirming that your name has been listed
If you do not hear back from your transplant team, call your transplant coordinator to follow up
To hold your place on the list, be sure to complete all of your evaluations and attend all scheduled appointments.
Many things affect waiting time, including where you live, so you may want to consider registering at a local center and another center that is not in your specific region. Your transplant coordinator will be able to help you register at multiple centers. And remember, each center has its own evaluation process. You may need additional testing before being added to the list. You will also need to be able to travel to any center you register with for all scheduled tests and appointments.


PRE-TRANSPLANT MEDICATIONS
Before your transplant, you may be taking many different medications. Be sure to continue to take these medications as prescribed unless your doctor tells you otherwise.

Once you are a candidate
Once you are a waiting list candidate, it is very important that you do everything you can to stay on the list. A donated organ meant for you could end up going to the next candidate on the list if you don’t keep up to date with needed tests, or if your contact information is out to date.

The best way to make sure you’re ready when a donor organ becomes available is to keep your transplant coordinator updated. Be sure to call if:

You've received a blood transfusion
You've changed your dialysis unit or treatment schedule
You've been hospitalized, had an infection, or if there have been any changes in your laboratory test results
You’ve lost or gained weight
Your health status has changed
There have been changes to your medications
Your telephone number or address has changed
You’re planning to go out of town
There's been a change in your medical insurance
Transplant candidates usually need to have follow-up tests. The type of tests needed will depend on your transplant center and could include keeping your medical history and physical exams updated, as well as evaluating PRA levels, routine cancer screenings, and tests that measure the health of your heart—especially if you have diabetes.

http://www.transplantexperience.com/kidney/body/before/list
Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
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
vanessa
Newbie
*
Offline Offline

Gender: Female
Posts: 17


Life is so short live it to the fullest!!!

« Reply #1 on: May 28, 2011, 03:38:19 PM »

hello and thank you for the info. i am going to meet the transplant team for the first time on the 13th . i am being treated in Denver colorado due to the fact i live in Cheyenne Wyoming. i have a few questions, first when you are placed on the list are you given immune sup presant meds to take till the transplant or do you take those just before ? then i am meeting with the transplant coordinator, surgeon, dietitian and a social worker is there anything i should be aware of like questions i should ask ? next i am starting pertionel dialysis on this day as well i have sorta had major problems and when i went to get the vein mapping done they found a huge blood clot on my left upper arm i was re sistent to the blood thinners therefore they placed a pick line in my right arm even though i plan on the perotineal should i ask to have a fistula put in at the same time as the cathater in the belly? thank you not only for helping me but for this site it is so aw some and wonderful to be able to ask questions!! thanks again Vanessa
Logged

vanessa!
Marina
Full Member
***
Offline Offline

Gender: Female
Posts: 376


God Bless my donor family!! :)

« Reply #2 on: May 28, 2011, 03:50:01 PM »

when you are placed on the list are you given immune sup presant meds to take till the transplant or do you take those just before ? thanks again Vanessa

Hi  Vanessa,

The immunosuppressant  drugs  are  given  post  TX.  They'll give you  an IV   mega  dose  during  surgery.
Then you'll be  given  different  doses  during  your  recoop  time  depending on your lab  numbers.
They're  tapers  (lowered)  rather  quickly,  at  least  in  my  case.
Good  luck  on your  appt!!!
 
Logged

"Anything is possible, if  you  BELIEVE....."  ~~~Joel  Osteen

"Yesterday is history, Tomorrow is a mystery, Today is a gift..... That is why it is called the present"

*************************************************
 Nov 1979 ~ Diabetes 
Apr. 2004- Nov 2010 ~ CAPD
Nov 9, 2010 ~  Received the  THE  GIFT OF LIFE at 
California Pacific  Medical  center  (CPMC)  in San  Francisco,  CA
Hazmat35
Full Member
***
Offline Offline

Gender: Male
Posts: 356


« Reply #3 on: July 08, 2017, 07:07:26 AM »

GETTING ON THE LIST

Before you’re listed
Once you and your nephrologist decide that a kidney transplant is right for you, your name will be placed on the United Network for Organ Sharing (UNOS) national transplant waiting list. In order to do this, your transplant team will need to perform a series of medical tests, which may include:

Kidney function tests such as glomerular filtration rate (GFR)
Physical exam with routine laboratory tests
Medical, family, and social histories
Compatibility testing, which provides your transplant team important information that can help make sure you and your donor match:
Blood type (A/B/O) and Human leukocyte antigens (HLA) or tissue type testing
Panel reactive antibodies (PRA) may also be measured to determine the presence of antibodies in your blood that may react to a transplant
Viral testing to check for active infections, such as hepatitis C (HCV), Epstein-Barr virus (EBV), or human immunodeficiency virus (HIV)
24-hour urine tests
Imaging tests such as an ultrasound, may also be conducted. Such testing helps your doctors visualize the amount of disease in your damaged kidney.

Depending upon your health and medical history and the requirements of your transplant center, more tests may also be necessary. Your transplant coordinator can help you better understand all of the tests you will need before you become a waiting list candidate.

Because waiting times can range from weeks to years, some tests will need to be performed several times to make sure your status on the list is kept up to date.

Steps to take for placement on the UNOS transplant waiting list
Choose a transplant hospital: you may be able to choose your own center (self-refer) or you can ask your physician for a referral
Choose a transplant hospital that meets your needs (financial, geographical, and experience with the type of transplant you need): review the UNOS website for information on different transplant programs across the country to help you narrow your choices
Schedule an appointment at the transplant hospital of your choice
Get the information you need by asking key questions
When your doctor determines that you are an appropriate transplant candidate, your transplant team will add you to the national waiting list and notify you of your waiting list status
Do not assume that your name is on the waiting list; make sure you get a letter from your transplant center confirming that your name has been listed
If you do not hear back from your transplant team, call your transplant coordinator to follow up
To hold your place on the list, be sure to complete all of your evaluations and attend all scheduled appointments.
Many things affect waiting time, including where you live, so you may want to consider registering at a local center and another center that is not in your specific region. Your transplant coordinator will be able to help you register at multiple centers. And remember, each center has its own evaluation process. You may need additional testing before being added to the list. You will also need to be able to travel to any center you register with for all scheduled tests and appointments.


PRE-TRANSPLANT MEDICATIONS
Before your transplant, you may be taking many different medications. Be sure to continue to take these medications as prescribed unless your doctor tells you otherwise.

Once you are a candidate
Once you are a waiting list candidate, it is very important that you do everything you can to stay on the list. A donated organ meant for you could end up going to the next candidate on the list if you don’t keep up to date with needed tests, or if your contact information is out to date.

The best way to make sure you’re ready when a donor organ becomes available is to keep your transplant coordinator updated. Be sure to call if:

You've received a blood transfusion
You've changed your dialysis unit or treatment schedule
You've been hospitalized, had an infection, or if there have been any changes in your laboratory test results
You’ve lost or gained weight
Your health status has changed
There have been changes to your medications
Your telephone number or address has changed
You’re planning to go out of town
There's been a change in your medical insurance
Transplant candidates usually need to have follow-up tests. The type of tests needed will depend on your transplant center and could include keeping your medical history and physical exams updated, as well as evaluating PRA levels, routine cancer screenings, and tests that measure the health of your heart—especially if you have diabetes.

http://www.transplantexperience.com/kidney/body/before/list
After (7) long years on Dialysis I have finally been told that I am a candidate for Transplant.  I have had to loose close to 100 lbs. along with other issues getting my labs in order and other health issues.  But I am on track now.

I have the NKF with help from my center help reimburse me for my insurance premiums at work (I still work full time).  But I have been told that I will need to show the Transplant coordinator that I have funds available in the form of a savings account or something for up to $5,000.00 to help with future premiums and meds if/when a transplant comes.  Is this common?
Logged

Brother Passed away - 1990 - Liver Disease
Diagnosed w/ Polycystic Kidney Disease - 1998
Mother passed away - Feb. 1999 - PKD
Sister passed away - Feb. 2006 - PKD
AV Fistula / Upper Left Arm - September 2009
Father passed away - September 2009
In-Center Hemo Dialysis - April 2010
Broken Knee Cap - January 2015
Multiple Fistula Grams / Angioplasty's since then!

Hating Dialysis since Day 1 and everyday since then!!!!  :)
SooMK
Premium Member
Full Member
*
Offline Offline

Gender: Female
Posts: 395


« Reply #4 on: July 08, 2017, 08:03:53 AM »

First, congrats! Before my transplant I had to meet with a financial advisor. Even though I was 65 and had Medicare coverage, a supplemental plan and Part D coverage, I was asked to confirm that I had enough resources for the expensive anti-rejection medications. As I recall, I had to fill out a statement of bank accounts and financial resources. I was not asked for any proof, however. As it turned out, I did need several thousand dollars in the first year to cover the anti-viral which was discontinued after about 9 months. Since then my out of pocket costs have been minimal (not counting premiums of course). I did not know what to think about this financial adviser meeting. It added unneeded stress and the information was not correct since my anti-rejection medications are covered under Part B and the supplemental. I called the number I was given for some followup questions and was never able to speak to someone who could answer the questions. I found this whole "financial advising" part of things useless and frustrating. However, it's the drill and it's not the only pre-transplant meeting I could have done without. That was three years ago and I'm wondering with so much uncertainty in the healthcare world right now perhaps they've become more aggressive. Wishing you the best!
Logged

SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
cassandra
Global Moderator/Premium Member
Elite Member
*
Offline Offline

Gender: Female
Posts: 4041


When all else fails run in circles, shout loudly

« Reply #5 on: July 09, 2017, 12:10:02 PM »

Well done Hazmat!!!

    :yahoo;
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Hazmat35
Full Member
***
Offline Offline

Gender: Male
Posts: 356


« Reply #6 on: July 10, 2017, 04:07:03 AM »

Well done Hazmat!!!

    :yahoo;

THANK YOU....YEAH ME!!!!  :bandance; :clap; :beer1; :yahoo; :2thumbsup;
Logged

Brother Passed away - 1990 - Liver Disease
Diagnosed w/ Polycystic Kidney Disease - 1998
Mother passed away - Feb. 1999 - PKD
Sister passed away - Feb. 2006 - PKD
AV Fistula / Upper Left Arm - September 2009
Father passed away - September 2009
In-Center Hemo Dialysis - April 2010
Broken Knee Cap - January 2015
Multiple Fistula Grams / Angioplasty's since then!

Hating Dialysis since Day 1 and everyday since then!!!!  :)
kristina
Premium Member
Elite Member
*
Offline Offline

Posts: 4346


« Reply #7 on: July 10, 2017, 10:12:25 AM »

Well done Hazmat and good luck wishes from Kristina. :grouphug;
Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
Premium Member
Member for Life
*
Offline Offline

Gender: Female
Posts: 9814


« Reply #8 on: July 10, 2017, 11:11:45 AM »

That's stupendous news!  I'm very happy for you!
Logged

"Empathy is the soul of democracy."  Jeremy Rifkin
Xplantdad
Full Member
***
Offline Offline

Gender: Male
Posts: 199


Health is not valued till sickness comes. T.Fuller

« Reply #9 on: July 10, 2017, 01:04:40 PM »

Awesome news!!
Logged

My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
Charlie B53
Global Moderator
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2513


« Reply #10 on: July 11, 2017, 05:45:38 AM »


Just a note on TX.

The dry-erase bulletin board in my clinic had an announcement Monday that TWO of our patients had successful Tx last week!

Whoo Hoo!
Logged
smartcookie
Full Member
***
Offline Offline

Gender: Female
Posts: 400


LMSW

« Reply #11 on: July 11, 2017, 07:00:12 AM »

Awesome news!!  And yes, it is common for transplant centers to require a certain amount of money be saved for transplant medicines.  However, I have found that if you are still saving but showing a good amount towards whatever you have to save, the hospital will go ahead and give you a transplant.  A lot of local organizations can help with fund raising.  Local restaurants and businesses are helpful, as well as religious organizations.  We have a program called Cooks for Christ that serve chicken bog (a chicken and rice dish with sausage and other spices added) to help people with medical funding.  They have helped a couple of my transplant patients.  Then, of course, you can always try social media giving such as Go Fund Me.  Good luck!!!
Logged

I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
justagirl2325
Full Member
***
Offline Offline

Posts: 189

« Reply #12 on: July 11, 2017, 07:23:10 AM »

Congrats on the hard work and getting on the list.  It's a very tough process.

Even in Canada where "medical" costs are covered by Universal Health Care they won't approve you until you prove that you've got a way to pay for the pills (not covered) and recommend that you have $10,000 saved for travel, rent costs as you have to stay close to the hospital for 4 weeks.
Logged
kitkatz
Administrator/Owner
Member for Life
*****
Offline Offline

Gender: Female
Posts: 16742


« Reply #13 on: July 13, 2017, 09:15:39 PM »

Very last appointment I had with UCLA was a turn down from being listed for transplant due to low blood pressure.
I did every test and referral they wanted and followed every order. 
Every doctor said "Oh you are going to be listed. It will happen quickly, too."
To get turned down broke me somewhere.
Logged



Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
okarol
Global Moderator/Premium Member
Member for Life
*
Offline Offline

Gender: Female
Posts: 100845


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #14 on: July 13, 2017, 10:46:14 PM »

Very last appointment I had with UCLA was a turn down from being listed for transplant due to low blood pressure.
I did every test and referral they wanted and followed every order. 
Every doctor said "Oh you are going to be listed. It will happen quickly, too."
To get turned down broke me somewhere.

I still don't understand. There's no treatment to bring up your BP?
I am sorry Kit. It makes no sense.
Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
Now needs a new kidney, 7 yr transplant lost due to rejection.
She started PD Sept. 2013
Searching for a living donor using social media, friends, family.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Jenna is an artist, she loves music, is a fan of ComicCon, and has been writing stories since she was little.
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
smartcookie
Full Member
***
Offline Offline

Gender: Female
Posts: 400


LMSW

« Reply #15 on: July 14, 2017, 07:51:28 AM »

Oh, Kit!!  I am so sorry!  Sorry for the language, but what a shitty thing to have happen! 
Logged

I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
kristina
Premium Member
Elite Member
*
Offline Offline

Posts: 4346


« Reply #16 on: July 14, 2017, 10:46:31 AM »

Dear Kitkatz, I am so sorry to read these devastating, heartbreaking news... and ... at the same time I don't understand and the decision makes no sense to me.
Is there no way your BP can be "sprighted-up" a bit?
I am very sorry and send you lots of cyber-hugs from Kristina. :grouphug;
Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Pages: [1] Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.14 | SMF © 2017, Simple Machines | Mobile View Valid XHTML 1.0! Valid CSS!