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Mischa
Regular Member


Date Joined Mar 2008
Total Posts : 47
   Posted 4/9/2008 9:23 PM (GMT -7)   
We spent the last 2 days testing, labs, counselor, coordinator, chest xray etc. We have no answers and dont know if we are any closer to getting on the list. I have no idea what his meld score would be. He was really poorly yesterday with a lot of confusion and anger.
He has had a good day today, dr's gave him some ambien, we couldnt afford the script at 156 bucks for a 1 month supply and medicaid refused to fill it so he did without. Yesterday the dr gave him a sample and he took it last night. OMG he got up feeling like a new person, the sober husband I used to know. Well I figure if that made him feel so much better than we will have to put off a bill or something to get it. I called today to get a partial fill, 47 bucks for 10 tabs, ouch, so I called walmart to compare prices and found out there is now a generic and it would only cost us 57.00 for the full script! so I went and got it, he will not be taking it regular but he will at least get some sleep. Dr Feghali called today, there was something in the nuclear test they did on his heart that he didnt like, he wants us back up there tuesday to talk with him and see what direction we are going to go, definitely heart catherization.
One thing that puzzles me about all of this. He was diagnosed back in Oct, you would think someone, somewhere along the line, would have ordered some type of testing to determine the condition of his liver, biopsy, mri, ct scan, anything. To date no one has looked at his liver, not even an ultrasound. We finally have an mri scheduled for next tuesday down in houston, I dont know how much longer we can afford to go back and forth, its almost 100 miles each way, plus the parking etc.

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/10/2008 4:38 AM (GMT -7)   
Mischa, I'm confused too. I don't understand why no testing has been done at all if he has been officially diagnosed with liver disease. How did they even come to the conclusion that he has liver disease? You may have said before and I just can't remember but does he have a Hepatologist? I would at least ask the Dr why no testing has been done to determine what stage he is at what damage there is.
 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."

 


Mischa
Regular Member


Date Joined Mar 2008
Total Posts : 47
   Posted 4/10/2008 5:42 AM (GMT -7)   
When he first got sick and finally went to the ER back in sept last year, the local ER did some bloodwork, gave him some lasix and antibiotics and told him there was nothing more that they could do for him, that he needed to get his affairs in order and sent him home. He had no form of insurance. He was still sick and getting sicker by the day so he went to galveston. By this time he was not only jaundiced but the ascites had taken over, his belly was so big it looked about to rupture. His cousin drove him to Galveston where they did bloodwork, drained 9, 2 liter bottles of fluid from his stomach and put him on lactulose and lasix, told him to go home and get his affairs in order, he only had a few weeks left to live.
He was only taking 1 tablespoon of lactulose once a day and it wasnt long until he was right back in the same shape. He started the process to get on indigent health care on the advice of galveston. They approved him for indigent health care and he set up with a local Dr. The local Dr basically did nothing. He drew very little fluid off at one time so my husband always looked 10 months preg. He kept the meds full and told my husband there was nothing more to be done, that he had maybe until june, if he was lucky he would blow a varicies and die quickly because the disease was a very slow painful one. My husband was finally approved for medicaid and his dr stopped seeing him, dr did not accept medicaid and his words " If I had very many medicaid patients I would make no money" yea, a real pillar of the community. My husband was at his last authorized para and as he was leaving he stopped in the er and asked a dr walking by if he knew of a local internal medicine dr. He was told about the dr.s office there in the complex. He went over there, asked if they took medicaid and when told yes he said ok i need a dr. She asked which dr he would like to make an appt with, he said which ever one doesnt have many patients so he got dr Bela.This was feb. Dr bela didnt do much more than the other drs except give him more meds and standing orders for a para. Oh yea, he sent him to a Dr in Houston, that appt was march 13 , Dr V took 13 vials of blood and sent my husbands name to the transplant coordinator to get him started on the process. Now here we are, waiting to find out if he made the list. Still no invasive testing, ultrasounds other than what he gets on his stomach and lung for the para and thora, no ct, mri, biopsies nada.

CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 4/11/2008 8:27 AM (GMT -7)   
Mischa,

I am very sorry to hear of your situation. I too have found diagnostics, care, and RXs to be directly related to one's insurance or ability to pay.

You both did a great in finding an internist that takes Medicaid. May I suggest the same approach with a GI or Hepatologist? Why not call every single one in the phone book to learn which ones take Medicaid? Sometimes University Hospitals have studies that include lots of free diagnostics or they might be able to direct you to a Medicaid specialist provider. I know there are fewer and fewer of them so be tenacious.

With the Ambien (I take it too - it does wonders to be rested) ask for a higher dose and break it in half. Also if you can wait there are Canadian parmacies on the internet that are cheaper than US generics. You fax or mail them your script & they mail back your meds but it takes 2-3 weeks.

Just my $02 worth. Don't give up!

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/11/2008 2:35 PM (GMT -7)   
Mischa, I agree with Cary. Don't give up!!!!! Be diligent and call every Gi dr and Hepatologist in the phone book. Someone is bound to take medicaid. Most Dr's don't want to take the medicaid because the government is so slow to pay. I know Dr's that have waited 18 months to get paid for a single visit. Unfortunately, our country just doesn't take care of us if we don't have insurance so we're stuck. I am curious as to how they determined that your husband has only a few months to live without testing him more vigorously. Keep trying to get help for him. It is possible that he is very terminal but I don't necessarily agree with their conclusions unless they have evidence to say otherwise.
 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."

 


Mischa
Regular Member


Date Joined Mar 2008
Total Posts : 47
   Posted 4/11/2008 3:36 PM (GMT -7)   
We have a very good hepatologist named Dr. Vierling, he is the one that sent our info to Dr. Goss to get started with the transplant process. We saw him for the first time on March 13, actually that was our only visit so far with him. I have noticed that all of this is very time consuming and it gets very frustrating at times. They said that we will have to attend 6 classes, once a week as well as AA 3 x a week for 6 months before he will be able to get a transplant. What I am wondering is, what if his liver goes south before all of this is done? Will they just let him die because he hasnt finished all of the classes?

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/11/2008 3:57 PM (GMT -7)   
Mischa, I can't really answer that for you. I do know that different states have different requirements and different proceedures. There are probably others on here that can answer your question with more authority and knowledge.
 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."

 


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 4/11/2008 8:18 PM (GMT -7)   
Hi Mischa,
I can't speak for other areas but the 2 transplant teams that I am working with would not allow me onto the transplant list until all pre-screening was complete, including 6 months of blood tests to ensure that I did not have any trace of alcohol or cannibus in my system, although they didn't make me go to AA. They said that United Network for Organ Sharing, or UNOS, the national organ allocation clearinghouse, needed assurance that the livers went to candidates that would not jeopardize the new liver with ANY alcohol. I was told that their policy is to ensure that these limited number of donated livers did not go to candidates with addiction issues, hence the testing for both alcohol and cannibus.
I know this doesn't answer your question so when you have a Dr. that you trust, ask the question. Whether it's true or not, I believed my teams when they said that they would not put me on the list until the 6 months of testing was completed.
In my experience, regardless of what testing has and hasn't been done, one gets onto the list based only on MELD score, which is determined by 3 blood tests. It is explained at the UNOS site at www.unos.org. If you want the official explanations, that's where to start.
I hope that things start going better for you guys. Even with the best of insurance, it is a tough process to navigate.
Keep the faith and remember that all bureaucracy has its weaknesses. I hope that you can find those weaknesses and bring the process to a healthy and happy conclusion.
Be well, John
If I weren't having so much fun with you guys,
I'd love to be out sailing on Long Island Sound
Woodmont on the Sound, Connecticut


Mischa
Regular Member


Date Joined Mar 2008
Total Posts : 47
   Posted 4/17/2008 5:00 PM (GMT -7)   
Another Update
We got his first MELD yesterday, he is at a 20. The transplant dr said he was going to ask for 3 exceptions(?) to the requirement of some classes to speed things up. The exceptions he is going to ask for because of 1) Weekly ascites removal of both thora and para in excess of 3 liters, 2) Inginual hernia that has now descended to his scrotum and 3) excessive weight loss ( he is now down to 128, he lost another 8 lbs this week) He has been eating well and I have added fat and calories to everything that goes in his mouth, ( my hips hate it! LOL) he basically grazes all day. Of course this does 2 things, 1 it increases his ammonias, even drinking lots of lactulose doesnt seem to be helping much there, he gets bound up a bit and cannot have a bowel movement for a day or 2 then has a few days of healthy ones then the cycle starts over, I have added apple juice daily to his diet to help with that. The other issue it has caused, his hernia was isolated to the pubic line exclusively, it has now descended to more than half way down his scrotum. When food is moving thru his intestines for elimination, it has to move thru the section that has dropped down and then back up to continue on its way. That causes him intense pain, making him grab for the 1/2 a vicodin ( 10/325) that the dr gave him, which in turn solidifies his stool and makes it harder to pass since he cant strain which makes it stay in his system longer producing more ammonia etc etc what a viscious circle. They will not do anything about the hernia until after the transplant if he makes the list. They did the MRI tuesday, we dont have anything back on that yet. Actually we have not had a word back on anything. The only reason why we have a MELD is because I called his coordinator for 3 days in a row, she finally called back with the results. We have had a call in for her since monday with another question and to find out where we are at with it being presented to committee, she still has not called us back. I do not know if this is normal or not, it sure ticks me off. Does she not realize that we depend on her communications with us for his very life?
The results on the Nuclear, the dr found several what appear top be partial blockages so he goes in next tuesday for the heart cath, we will find out what exactly needs to be done while they are in.
So now we are in limbo, we know he has a high enough MELD but we dont know if he has been accepted or not.
How long does it usually take to find out if you have been accepted to the list or not?
Therese

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/17/2008 7:50 PM (GMT -7)   
Mischa, it's all enough to drive a soul crazy isn't it? As for the call to the coordinator goes, I think this is a common problem. Do you have an email address for her? Some of them do so you may be able to email her with your questions. If not then all you can do is wait for her to call you back. However; I think I would be super nice and address the fact that you realize how busy she is but you are concerned that it takes so long for her to answer you back. You may want to ask her if there is something you can do to expediate her return calls. The one thing you don't want to do is alienate her - so be kind (even tho you really want to scream at her). Keep us posted.

 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."

 


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 4/17/2008 8:12 PM (GMT -7)   

Therese  I thought it was difficult for my husband to get listed.  But I do think your story tops everything.  He did go through the same thing with AA.  We were not told he needed to go to AA until 7 months after he had been diagnosed with ESLD.  He had not been drinking at all but they  are still making him go to AA and also see a counselor every week.  Their explanation for that was so he could get some insight in to  his disease!.  All he has to do is look in the mirror and he gets a Whole lot of insight.  What we finally did was everything they asked.  They do hold your husbands life in their had so I know its hard but just go.  I have heard that just showing that you are willing to try is a big deal.  Just hang in there.  I do know that the surgeon at Vanderbilt told us they do most of their transplants with a MELD of 25.  I talked to a nurse today and she said Kentucky does most of their transplants with a MELD of 15.  I do not understand how that can be done so  I just read everything I can get my hands on to become educated.  Sometime I get so tired I just want to quit.  But I recharge like Pink Grandma says and keep going.  You can do it.  I know you can.  This is an a great Forum so hang in there and please don't give up.

JoAnn

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