Final review for being listed

[Deanne]

My coordinator just called. My file is going for final review on Thursday. She said she'll call me on Friday to confirm I'm officially listed. My sister is confirmed as a match and is starting her required tests to make sure she's healthy enough to donate. I don't know how long it'll all take, but I'm pretty sure she'll pass them.

[Marina]

 

[jbeany]

 

Fingers crossed!

[paris]

This is great news Deanne!  I'll be thinking really good thoughts for you and your sister.  You are getting closer and closer.  After waiting so long, things could happen fast now.   I'm excited for you.   

[willowtreewren]

 

YES!!!!!

 

[Rodneyss1]

Great news!!!!  Keep us updated!

[Poppylicious]

 

[malaka]

Don't mean to hijack this thread, but I have a question that I suspect some here may know the answer to.  I am followed by my nephro since 2009, but he sent me for second opinion to nearby university center where I was seen several times, had a second biopsy, blood testing, etc. Not much to offer, but that nephro said I'd be contacted by transplant team for evaluation as my disease had progressed to Stage 5.   A few weeks passed, so I called them thinking I'd somehow been forgotten.

Here's the reply I got:  we'll submit your information to "financial" and be back in touch with you.  Is this normal, or a kiss off?  Despite being  Stage 5, I'm not on dialysis yet.  Did I jump the gun somehow? 

Finally, assuming "financial" gives me a blessing, what is involved in a transplant evaluation?  I know genetics and they probably want to be sure I could survive any surgery, but is there anything else I should be aware of?

Thanks.

Signed,
Puzzled in Michigan

[okarol]

My coordinator just called. My file is going for final review on Thursday. She said she'll call me on Friday to confirm I'm officially listed. My sister is confirmed as a match and is starting her required tests to make sure she's healthy enough to donate. I don't know how long it'll all take, but I'm pretty sure she'll pass them.

I hope all progresses forward Deanne! Jenna's case went before the committee on Wednesday and she got an email yesterday that she was listed. Good luck to your sister! 

[okarol]

Don't mean to hijack this thread, but I have a question that I suspect some here may know the answer to.  I am followed by my nephro since 2009, but he sent me for second opinion to nearby university center where I was seen several times, had a second biopsy, blood testing, etc. Not much to offer, but that nephro said I'd be contacted by transplant team for evaluation as my disease had progressed to Stage 5.   A few weeks passed, so I called them thinking I'd somehow been forgotten.

Here's the reply I got:  we'll submit your information to "financial" and be back in touch with you.  Is this normal, or a kiss off?  Despite being  Stage 5, I'm not on dialysis yet.  Did I jump the gun somehow? 

Finally, assuming "financial" gives me a blessing, what is involved in a transplant evaluation?  I know genetics and they probably want to be sure I could survive any surgery, but is there anything else I should be aware of?

Thanks.

Signed,
Puzzled in Michigan

You don't need a referral from you neph to began the evaluation process. Do you know your GFR? If it is below 20 then you qualify to be listed. Many centers review your coverage to see if your insurance company will pay for the testing and transplant. If you are on Medicare it doesn't pay the full amount, and the patient can be liable for part of the cost. I would give them a week or so, then call again and see what the status is. Good luck!

[Willis]

Don't mean to hijack this thread, but I have a question that I suspect some here may know the answer to.  I am followed by my nephro since 2009, but he sent me for second opinion to nearby university center where I was seen several times, had a second biopsy, blood testing, etc. Not much to offer, but that nephro said I'd be contacted by transplant team for evaluation as my disease had progressed to Stage 5.   A few weeks passed, so I called them thinking I'd somehow been forgotten.

Here's the reply I got:  we'll submit your information to "financial" and be back in touch with you.  Is this normal, or a kiss off?  Despite being  Stage 5, I'm not on dialysis yet.  Did I jump the gun somehow? 

Finally, assuming "financial" gives me a blessing, what is involved in a transplant evaluation?  I know genetics and they probably want to be sure I could survive any surgery, but is there anything else I should be aware of?

Thanks.

Signed,
Puzzled in Michigan

Do you have insurance? I didn't before I went on D and I was blown off by the transplant center too. They didn't even have the courtesy to call. When my wife inquired they said if you don't have insurance they wanted $15,000 cash and a $250,000 bond to even look at my application.

Now that I'm on D and have Medicare they are all smiles and called me right away to schedule my first group orientation meeting.

 

[MooseMom]

What a huge step forward for you!!  I'm thrilled!

[thegrammalady]

fantastic!!!!   

[cariad]

 

Fingers crossed for you, Deanne! I'll be following your journey all the way. All the best to you and your star of a sister!

[Ang]

hope its all good

[Marina]

Don't mean to hijack this thread, but I have a question that I suspect some here may know the answer to.  I am followed by my nephro since 2009, but he sent me for second opinion to nearby university center where I was seen several times, had a second biopsy, blood testing, etc. Not much to offer, but that nephro said I'd be contacted by transplant team for evaluation as my disease had progressed to Stage 5.   A few weeks passed, so I called them thinking I'd somehow been forgotten.

Here's the reply I got:  we'll submit your information to "financial" and be back in touch with you.  Is this normal, or a kiss off?  Despite being  Stage 5, I'm not on dialysis yet.  Did I jump the gun somehow? 

Finally, assuming "financial" gives me a blessing, what is involved in a transplant evaluation?  I know genetics and they probably want to be sure I could survive any surgery, but is there anything else I should be aware of?

Thanks.

Signed,
Puzzled in Michigan

All  TX  centers  need  to  verify   or  get  "financial  clearance"   before they  see you  and/or  continue  with  further  appts.
I  was  told  financial  clearance  usually takes  3-6 weeks.  The  insurance  company  might need  further  info  from  neph  and/or  dialysis  centers  before  they  make  a final  decision  on  whether  to  pay TX  or  not.
I  was  very  lucky  (so  I  was  told  from  finacial  coordinator)  my  insurance  got  back to  her  within   4 days.
I  suppose  in  your  case  it  might  take  longer  for  financial  clearance  due  to  the  fact you're  not  on  dialysis  yet.  Insurance  might  request  ALOT   of  info  from  neph  as  well  as  labs  for up  to the  last  6months  to 1 yr.

Good  luck, I hope you  get  an  answer  soon!!

You don't need a referral from you neph to began the evaluation process. Do you know your GFR? If it is below 20 then you qualify to be listed. Many centers review your coverage to see if your insurance company will pay for the testing and transplant. If you are on Medicare it doesn't pay the full amount, and the patient can be liable for part of the cost. I would give them a week or so, then call again and see what the status is. Good luck!

Carol,
Depending on   insurance,  you  might or  might  not  need  a  referral from  neph  no matter  how  low  GFR is.
My  insurance  required a  referral  before  they  would  authorize  an  evaluation   appt.
Of  course the  TX  center  would  not  see me  either  until they  had   autho  from  insurance.

[okarol]

You don't need a referral from you neph to began the evaluation process. Do you know your GFR? If it is below 20 then you qualify to be listed. Many centers review your coverage to see if your insurance company will pay for the testing and transplant. If you are on Medicare it doesn't pay the full amount, and the patient can be liable for part of the cost. I would give them a week or so, then call again and see what the status is. Good luck!

Carol,
Depending on   insurance,  you  might or  might  not  need  a  referral from  neph  no matter  how  low  GFR is.
My  insurance  required a  referral  before  they  would  authorize  an  evaluation   appt.
Of  course the  TX  center  would  not  see me  either  until they  had   autho  from  insurance.

Transplant centers don't REQUIRE referrals. If your insurance does, that's a different matter.
I know many patients who wait for their neph to make the first move, and it really is up to the patient to be proactive to start the process, otherwise they could wait forever.

[MooseMom]

On my transplant center's website, they tell you to call THIS number to set up an appt with their transplant coordinator, so this leads me to believe that centers don't require a referral for an initial evaluation, but bear in mind that the initial evaluation is ever so expensive, especially the lab work.  So, they will TALK to you without a referral, but they certainly won't be doing any surgery on you if they think you have no insurance or other means by which to pay their ungodly charges!

I don't know for sure, but I suspect that my center cleared me medically before they presented my case to their financial people.  I remember being in Texas because my mother was dying, and my coordinator called me to tell me that the neph/surgeons cleared me but that they still had to make sure they would be paid (said more delicately than that).  I had to wait only a couple of weeks for that final financial OK.  Ultimately, it's all about the money.

[Deanne]

My transplant center wouldn't talk to me without a referral from my neph. I called to ask them some general questions in advance and they wouldn't even let me to this. Then after the referral, they reviewed my insurance information before they set up the first evaluation appointment and one of my first meetings with them was to go over financial information again. Part of this was them asking about my post-transplant job plans. Luckily, I have a stable full-time job now and I plan to keep my job, so it was a non-issue, but I could tell from their questions that it would have been a show-stopper.

[MooseMom]

Part of this was them asking about my post-transplant job plans. Luckily, I have a stable full-time job now and I plan to keep my job, so it was a non-issue, but I could tell from their questions that it would have been a show-stopper.

Wait a minute.  I don't understand this.  Were they asking you questions about your post-transplant employment plans because they wanted to make sure you had a way to pay for their services and your meds, or were they asking you these questions because they wanted to make sure you were "valuable" enough to society to warrant a transplant?

[okarol]

Medicare also pays for your transplant so not sure why you're getting so much financial quizzing.

[paris]

Every year they reviewed our financial situation.  Then they would give us a print out of transplant drugs and what our insurance company would pay.   I took it as them getting me ready and that there would be no surprises financially after.   They probably wanted to make sure that after the 36 month mark, you were able to go back to work and have insurance.   I would always keep telling myself that they were working for me not against --- can you imagine getting a transplant and then suddenly find out how much you would pay a month for meds and had no idea that medicare covered 36 months?   

I hope it gets settled and you can get this part behind you.

[Deanne]

They asked me about my future work plans because they wanted to know I'd thought about what I would do after the 36-months of Medicare ran out.

[MooseMom]

They asked me about my future work plans because they wanted to know I'd thought about what I would do after the 36-months of Medicare ran out.

Ah yes, it's about the money.