I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: okarol on December 18, 2010, 05:44:46 PM

Title: GETTING ON THE LIST
Post by: okarol on December 18, 2010, 05:44:46 PM
GETTING ON THE LIST

Before youíre 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 donít keep up to date with needed tests, or if your contact information is out to date.

The best way to make sure youíre 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
Youíve lost or gained weight
Your health status has changed
There have been changes to your medications
Your telephone number or address has changed
Youíre 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 heartóespecially if you have diabetes.

http://www.transplantexperience.com/kidney/body/before/list
Title: Re: GETTING ON THE LIST
Post by: vanessa 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
Title: Re: GETTING ON THE LIST
Post by: Marina 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!!!
 
Title: Re: GETTING ON THE LIST
Post by: Hazmat35 on July 08, 2017, 07:07:26 AM
GETTING ON THE LIST

Before youíre 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 donít keep up to date with needed tests, or if your contact information is out to date.

The best way to make sure youíre 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
Youíve lost or gained weight
Your health status has changed
There have been changes to your medications
Your telephone number or address has changed
Youíre 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 heartóespecially 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?
Title: Re: GETTING ON THE LIST
Post by: SooMK 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!
Title: Re: GETTING ON THE LIST
Post by: cassandra on July 09, 2017, 12:10:02 PM
Well done Hazmat!!!

    :yahoo;
Title: Re: GETTING ON THE LIST
Post by: Hazmat35 on July 10, 2017, 04:07:03 AM
Well done Hazmat!!!

    :yahoo;

THANK YOU....YEAH ME!!!!  :bandance; :clap; :beer1; :yahoo; :2thumbsup;
Title: Re: GETTING ON THE LIST
Post by: kristina on July 10, 2017, 10:12:25 AM
Well done Hazmat and good luck wishes from Kristina. :grouphug;
Title: Re: GETTING ON THE LIST
Post by: MooseMom on July 10, 2017, 11:11:45 AM
That's stupendous news!  I'm very happy for you!
Title: Re: GETTING ON THE LIST
Post by: Xplantdad on July 10, 2017, 01:04:40 PM
Awesome news!!
Title: Re: GETTING ON THE LIST
Post by: Charlie B53 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!
Title: Re: GETTING ON THE LIST
Post by: smartcookie 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!!!
Title: Re: GETTING ON THE LIST
Post by: justagirl2325 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.
Title: Re: GETTING ON THE LIST
Post by: kitkatz 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.
Title: Re: GETTING ON THE LIST
Post by: okarol 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.
Title: Re: GETTING ON THE LIST
Post by: smartcookie 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! 
Title: Re: GETTING ON THE LIST
Post by: kristina 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;
Title: Re: GETTING ON THE LIST
Post by: Whamo on December 22, 2017, 03:30:23 AM
 :2thumbsup; :yahoo;  I finally made it to the transfer list after six years of dialysis.  Woo-hoo.
Title: Re: GETTING ON THE LIST
Post by: iolaire on December 22, 2017, 06:17:42 AM
:2thumbsup; :yahoo;  I finally made it to the transfer list after six years of dialysis.  Woo-hoo.
Congratulations!  That should put you near the average wait time right?
Title: Re: GETTING ON THE LIST
Post by: fightingPKD on December 10, 2019, 10:14:24 AM
Well, formally put on the transplant list tonight.  Unfortunately, not the most common blood type so I will just manage/fight as best I can.  It's been a rough week or so, i've been more tired than usual...
Title: Re: GETTING ON THE LIST
Post by: okarol on September 03, 2020, 10:34:11 PM
Well, formally put on the transplant list tonight.  Unfortunately, not the most common blood type so I will just manage/fight as best I can.  It's been a rough week or so, i've been more tired than usual...

What blood type are you?