Transplant Evaluation

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Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 3/25/2009 8:03 PM (GMT -7)   
Hi Everyone,  I am so sorry that I haven't been around for awhile.  I have been really busy and very stessed out.  After my husbands last doctor's visit on March 3 they decided to start the workup for the transplant list.  His last 3 MELD scores have been 17.  We were at the hospital all day Friday having all the testing done and talking with a Transplant Coordinator, Social Worker and dietician.  We were told that in order for him to be considered he has to have a secondary insurance to cover what Medicare won't.  Then we were told that it is going to be next to impossible to find a insurance company to carry him.  Medicare covers 100% of the transplant, but it will only cover 80% of the drugs and the doctors visits that are required after the transplant.  He has applied for Medicaid in the past and was told that he didn't qualify.  I feel like we are falling through the cracks because of our income level.  We don't have enough money to cover his medical needs but we have too much (which is not very much) to qualify for Medicare. We are really starting to get scared.  My husband never realized how sick he is until the doctor mentioned getting him on the transplant list.  He has been really depressed and afraid ever since.  He won't really talk to me about how he is feeling.  I guess I don't really talk to him about how I am feeling either.  I don't want him to know how afraid I really am.  We are waiting to hear back from the Transplant Coordinator for the results of the tests he took last Friday.  I'm sure that they are going to come back fine.
 
Please include us in your prayers that we find a way to get him listed.
 
Thank you all for being here.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/25/2009 11:19 PM (GMT -7)   

Butterfly, you've been missed.  PG posted to you recently.  The good news is that your husband is being evaluated.  The financial end...my brother-in-law went through that.  I know my sis was complaining about all the bills.  Medicare came just in time, as they had no insurance at all.  Since Medicare will take care of most of the expenses, you should ask about charity assistance at the hospital where the transplant will take place.  Ask the social worker if she has any suggestions.  If all else fails, let your family, friends, and community know.  Have a fund raiser...or several!  People do this all the time!  Go to the local media!  You may have to get creative, but it can be done.  As a final resort, take out a loan if you have to.  One way or another, you need to assure the transplant team that the bills will be paid.

Please talk to your husband about your feelings and encourage him to talk to you.  This ordeal could bring you closer, but you have to communicate.

And please remember to take care of yourself.  You will need your strength and fortitude in the days and months ahead.

Keep us updated!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 3/26/2009 7:07 AM (GMT -7)   
Butterflythree, My husband got Medicare after the transplant. There are some conditions where you can not be turned down. My husband has diabetes, they had to accept him. The best things to do is to talk with the companies, that provide the supplements that came with your husband's Medicare pack. There could be a condition listed and they would have to accept him by law.
Teresa

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 3/26/2009 6:48 PM (GMT -7)   
Butterfly-

So glad to hear from you. I was starting to worry about you. I know all this is overwhelming, but like Connie mentioned.....there is more than one way to skin a cat, as the saying goes. Do start fundraiser.....there are MANY organizations out there that will help with the process. Also, most of the drug companies that manufacture the medications he will need to be on after the transplant do have patient assistance programs, and based on your income, will help cover the medications. Talk to the financial coordinator on the transplant team. They should have ALL this information!

I know how frustrated you are with the whole medicaid process. My husband is on medicaid, and they are gettin ready to review my salary, which is not much, but I have a feeling will be too much! It scares me to death that we will lose his insurance benefits!!

You hang in there.....the answers will come. Call the financial coordinator on the transplant team....the should have this information for you as they have to help patients qualify for the medications all the time!

I will be praying for clear answers for you!

Mer

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 3/28/2009 7:50 PM (GMT -7)   
Thanks so much for all of your suggestions and advice. You have been really helpful. I always post "There is always hope!", but lately I have felt so hopeless. I have been trying to get my husband to think positve while inside I have been having very negative thoughts. It has just been so hard watching him as the realization of what is happening to him has just begun to dawn on him. I have tried to talk to him in the past about the disease, but I think he has been in denial until the doctor mentioned transplant. It seemed to really crush him. He has been better the past couple of days. But at first he was so nervous and afraid that he was throwing up. He stayed in bed for about a week straight. Today he has seemed to have a more postive attitude. I am so thankful that you guys are here. I'm sorry that I haven't been around to be supportive for you lately. I have three more weeks of tax season then I will have more time again (I hope).

You are all always in my prayers.
Butterflythree
 
There is always hope!


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 3/28/2009 8:58 PM (GMT -7)   
Butterfly,

I think what you guys are feeling is perfectly normal and natural. I think the thing that made it so real for my husband and I when we went through evaluation was all the information given to us all day everry day and then realizing that this reallly could be happening. There were many many feelings that washed over us, but we were able to come to terms with it and put it in God's hands....after all, this will happen in his time, not ours. You hang in there....take a deep breath, etc......make the call about the patient assistance programs.....may be worth your while.

Keep your chin up!

Mer

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/28/2009 9:40 PM (GMT -7)   

Butterfly, it's now your turn to let us support you.  Please remember that.  :-)

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/1/2009 9:11 PM (GMT -7)   

I DON'T appreciate my posts being highjacked!!   mad  I know this was April Fool's Day, but on this forum it's not funny.     nono



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 4/2/2009 2:31:57 AM (GMT-6)


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/1/2009 9:21 PM (GMT -7)   
Connie what do you mean hijacked?
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/2/2009 1:30 AM (GMT -7)   
That person above hacked into my post and added whatever it was that you edited out.  He/she did this on another of my posts, also.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 4/2/2009 3:37 PM (GMT -7)   

Butterfly, There is an orginization that helps you to have fundraisers for transplant monies. They have a great reputation and legitimate. You can google for the info or I can try to find them again. I got the info from our center.

Sue

 


When I started counting my blessings my whole world turned around.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 4/2/2009 7:18 PM (GMT -7)   
Thanks for the info Sue. My prayers are with you always.

Connie, I noticed the two copied posts also. I didn't find them funny either. I hope your tests all go well.
Butterflythree
 
There is always hope!

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