update on Will

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mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 4/7/2008 7:28 PM (GMT -7)   
Hello All,
We got back from Shand's hospital after 2 day's of testing ct I'm sure you all know the drill! Well we got good news, bad news and discouraging news! First, Will's CT came back he has 2 small lessions on his right lobe. Dr. say's we have to just keep an eye on them every 3 months! Will's father wanted to do the Live Liver Transplant which Dr. say's is pretty much out of the question at this time. At our Dr's visit he sent us over to talk with the transplant coordinator and not sure now if it is out, because of medical reasons or financial reasons. For JohnCT your insurance from Hell situation I am so aware!As here's what I learned. Will, turns 22yrs. old tomorrow ,AML LEUKEMIA in Remmission for 20YRS.  2002 Found out there were side effects due to either the chemo or blood transfusion Chronic Hep B biochemical cirrhosis He has no insurance going through our 3rd appeal for SSI and Medicaid! Which I'm told won't pick him up until POST TRANSPLANT! And Medicaid Will-Not pay for Live Donor. So he has to get a Corp. type job and get on a insurance policy w/a million dollar policy w/ no transplant limit. HE WORKS FOR HIS DAD CLEANING POOLS SO HE CAN PAY HIS BILLS. I'm really keeping it COOL! Because, I'm very ANGRY about this! OK, Dr. talks to x-husband (live Donor), tell's him no worry your son will be fine for 2-5 more yrs. so now, I'm totaly cunfused! Same Dr. told Me that by the end of 2008 Will would need the transplant and unfortunaley he will be in intensive care before that will happen! SSI & MEDICAID OUR STATE AND COUNTY, GOV'N SAY'S HIS ILLNESS IS NOT SEVERE ENOUGH TO QUALIFY HIM HE'S STILL ABLE TO WORK !!! I in front of Will on Friday told the Dr. what was going on we need to all be on the same page! Which is it!!! He's say's yes! to what he told me in Sept. and then I said Would'nt you want to do the Live Donor while he is still well and functioning He basically told me without insurance NO Live Liver Transplant will be done! I DO NOT WANT TO SEE MY SON SUFFER! I'M SO NOT HOLDING THIS TOGETHER VERY WELL!+ I'm running out of vent space! L,H&SMOOCHES TONI

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 4/7/2008 9:07 PM (GMT -7)   
((((Toni)))), I feel your frustrations and anger. Dansbrother gave you some good advice. One of my friends did the same thing to get Medicaid.

Plenty of thoughts and prayers will be with you and Will.
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.


mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 4/8/2008 4:29 AM (GMT -7)   
Goodmorning Pink Grandma and Dansbrother,
I have contacted an attorney! Will has to be denied 3 times go threw a formal board appeal which they have 120 days to respond! Will has his own apt. he works because he has to! Of course sence Oct. he has been paid under the table! Because of his age he falls threw the cracks!!! I've been fighting this system for 5 +years believe me I know the frustrations!
I still think it SUCKS!!! I have been told a time or two to write our Govn'r well I do plan to but, I work and trying to find the words to put down on paper without sounding like a total over reacting mom is a little tuff!
Huggs, and Smooches
Toni

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/8/2008 6:47 AM (GMT -7)   
Hi Toni, sorry to hear that everything is in such turmoil. I was curious if Will had letters from his Dr that he can't work or is unemployable. If he doesn't I hope he would consider getting it from as many Dr's as possible. When he applies for medicaid or it goes before the panel for re-evaluation that will be the clincher. If you can will you email me? The email address is in my profile. I would like to share some possibilities about Will's issues.

 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 4/8/2008 9:21 AM (GMT -7)   
Hey Shelly and Dansbrother,
sad  No Will has no insurance! As long as he's been sick he has been covered under Healthy Kids threw the school at 18 that stopped . Because he is an adult as of Oct. when he got real sick and Dr. told him he needed to rest more and cut down on his hours he still made 118.00a month to much to qualify. He has to work in order to Live, He does support himself but like most he has his good day's and bad. We are fighting!!! It's just with his age he falls threw the cracks. Besides this all about the BUCK! Unfortunatley these people are ignorant to this illness! Attorney faxed over SSI Requirements to qualify of course you have to go threw them then Children and Family Services to get Medicaid. Anyway, highlighted area said patient with cirrhosis will not be covered until Post-Transplant . Talking with the coordinator it is estimated we need to come up with to start 300,000.00. Might as well be a Million! I guess I just wished that he was enjoying LIFE and not having to worry about wheather or not we will have the funds!  The DR. is helping us out as much as possible Will is on an indegent program up at Shand's at which we by-pass the reception area and Dr. gives us his CT and Lab test instead of passing them along being checked in and such. That won't last long! Pharmasutical( Bristol Myers Squibb) sends us 3 month supply of Meds so that helps! We are planning a benefit for him and the community has been very supportive. He has an upbeat possative attitude! I'll keep on making noise! One day we are going to beat this too!
Huggs and Smooches,
Toni

Mischa
Regular Member


Date Joined Mar 2008
Total Posts : 47
   Posted 4/9/2008 4:52 AM (GMT -7)   
From what you posted, If I understand correctly, Medicaid will not pay for live donor transplant, correct? Why do you insist on a live donor transplant? We just went thru 2 day so f testing to try to get my husband on the list, first appointment I asked the Dr if I could be considered for a live donor transplant and our hospital seldom ever does live donor transplants. The dr. said they alot of times lose the donor and the recipient lives.
My husband just got Medicaid a few months ago, he did not have difficulty getting it this time which I was amazed but due to the graveness of the illness and the Indigent Care social worker working with him it was expedited.
Good Luck with your son.
Therese

mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 4/9/2008 9:11 PM (GMT -7)   
Hello Mischa and Dansbrother,
I wrote to you earlier today and somehow I see it never made it! With my brain fog I may have hit cancel. Anyways here we go ! Mischa, Wills dad has lost 75lbs since Christmas, He did alot of research and found out he could be a Live Donor, However, Dr's. say that it is not an option at this time! No Medicaid will not pay for Live Liver transplant nor will the donors Insurance. It is all on your husband like it is all on my Will . Corp. Ins. with million dollar Min. coverage and no limit to Transplant's. Yes, I found out threw Lifelink that the statistics showed that Live Liver Donors because it is a major organ a few have died! Dr's try and talk you out of if their reason is they only have 1 patient not 2 . Supposidly all of Florida is ban or will be from doing Live Liver Transplants and most other States now that has nothing to do with any other organs! I have been told they do it in India, i really don't see us doing that and Will say's no way will someone even his Dad give up their Life for his. He's going to BEAT this fight! Good luck to you as well, My son is not as sick as your  husband. I hope you get listed and get that needed Liver as I would wish the say for all that needs one! It's tragic someone has to Die to save our own! It is so not fare! Now, is where I get angry at our Govn't Dansbrother, You are so right! It is pathetic that if my son were an Illegal Alien or a Prisoner he would get help! Will has been 20 yrs. in remmission from AML Leukemia he's 22 as of Tuesday! Due to the fact he does have a history of illness, considering his age, weight and job history he still can preform lighter workloads they do not consider him disabled.SSI denied SAME statement with Medicaid except the form also said we were late as we only had 10 day's to reply I faxed it over same week we got it! I will have to write more later ! Night All.
Huggs and Smooches
Toni
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