Failed evaluation

Hi all,
Where to start...bottom line the liver team told me today they r not approving me for transplant. Said I have too many stressors in place. I asked if this is a temporary decision or "forever" he did not say only temp, but was very discouraging about future possibility. Also wants me in a drug/ alcohol program. 4 yrs ago when my husband of 36 yrs died from liver ca, I took the remaining of his pain pills and found out they actually help emotional pain also. I do have cryoglobulenemia and had a flare right after he died and was in excruciating pain. I am still bothered by it but never to the degree of that flare. I took those pills for abt 6-9 months. That was it. I am feeling like such an idiot for being so honest. I have always been honest. Apparently to a fault.
The other thing that happened was when I was being interviewed by the social worker and psychologist, when the matter of money came up I started crying and did not quit until we were finished with that topic. My bleak financial state is a huge stressor for me. I got on Medicaid in August and get food stamps. My only income is from ss. My house pmt is more than my ss check. Dire straits. After realizing how stressed I am abt the money I got a cash paying job that will not effect my Medicaid status (I hope). As a reminder, I have hep c, cirrhosis, and hepatocellular carcinoma. I had 3 lesions and they just successfully ablated 2 of them and the 3rd is getting smaller. Maybe the 3rd was never Ca. It is very small. My meld is 22. I told them abt the sleeping many hrs, at least 14, my forgetfulness and confusion and they added lactulose to my xazifan. I have seen a big improvement. I aced all the other tests, lungs, heart, bone density, etc , etc.
they said they would cont treating me with ablations or other procedures but no TP. I asked if I became very ill if they would TP me and they said NO!
I don't know what to do. If I moved on down the road to Duke all my records would follow me planting seeds of doubt abt my emotional status before I even get there. I am happy to c the psychologist and gain some insight for stress management. I have already seen him twice. today they said i should see a psychiatrist too. again news to me.Now I am beginning to think I am crazy. I know that I am intense and I take things very seriously, but I never have thought I am crazy. I also realized my encephalopathy could have been causing what was seen as too stressed. They had trouble accepting that my x-husband is going to be my primary caregiver. We have only been divorced since end of June this yr and I admitted he could still generate some emotion in me but basically r good friends. We were only married for 1 yr and both realized it was not what we wanted. I have moved on in leaps and bounds but I still think it is sad. It was a big disappointment for me that it did not work out. So I said I could get my sister as she had offered. After this call I emailed the dr that had called me and asked a question abt r conversation and he said " considering I do not even have a primary care giver in place....blah, blah" my x is still in place, but I told them if they thought a change would be better I could make a change. later today I was told by my nurse coordinator I can't have a primary care person out of state. News to me. I have a list of 8 people willing to drive me the 4'hrs to the transplant center if i am called for a liver and if the match was good my x would be called and he could fly here before I got out of icu or sooner.
I am really discouraged, disappointed and scared I will become really sick and they won't help me. ( with TP) seems like i have so much invested there and I really like the docs etc. i wonder if I change centers if it would just be a replay and me spinning my wheels. i have done everything they have askd me to do, and done it quickly.

Any thoughts or questions or similar experiences I would appreciate hearing.
Thanks guys.
Zoarie

Thanks Mae, so much. Yes,
I would have no problem doing that. It was my inexperience that allowed me to tell them things I thought they would find favor with...yes, I took some narcotics after my husband died, but I also stopped on my own. After living alternative life thru the 60's, to me, it doesn't seem like such a bad thing knowing what COULD have been done. I have not drank for over 30yrs. In fact that is when we stopped doing any drugs, drinking, smoking, even stopped eating animal products.
The real consequence of this happening is lack of trust. I feel they r not my advocates or in my corner.
I am not "blaming" them. Certainly, my laying it all out there with nothing to hide shot me in the foot, both feet. That makes me feel stupid.
Last night when I was writing that email, I was thinking what if one of them monitors this site? Now getting paranoid?
Have u guys heard that ur primary care person has to live in ur same town?
When there for my eval I was there for 4 days with grueling, non stop tests scheduled up to the very end. Rushing from one to another. They also could not get a vein and took 2.5 hrs messing with that. That always causes stress for me. It turns into a big deal. IV team finally came and got it, and left it in for my next scan and blood draw. Lab wouldn't touch anything someone else had put in and said I had to go back up to clinic and have the nurse draw from it. That is where the 2.5 hrs came into play. She didn't have the correct connectors and everything she did went from bad to worse. She finally got some of the tubes filled but it was all clotted by then and many tests were ruined due to that. Both arms were blk and blue.
I feel I may be beating my head against the wall. What if I continue to jump thru their hoops and I get really sick and they still will not accept me. I'd b too sick to get myself to the bathroom let alone a new transplant center.
Again thank u Mae. I value everything u said and have no problem with any of it.
My x thinks they could not accept the fact that that he is my ex and that for me a minister would be the head guy at the new Buddhist center. What do u think? Bible Belt? Too outside their box? Is that possible for these intelligent dr 's to be able to feel like that? Or Me grasping at straws?
Thanks everyone.
Zo

Zoarie,

We have two members who have been in your shoes...David and Connie...alone basically with TP on the horizon.

Both got their TP claiming to have a caregiver...a mother and a sister...both from out of state...

Each stayed less than 2 weeks and took off leaving them alone to face their recovery.

They kept their mouths closed and sucked it up and handled it.

My Mike, who had his TP 2.5 years ago would have been in your shoes if I had not been on the scene...hep c, cancer, and alcoholic cirrhosis. He'd been an IV drug user and an alcoholic until he got the death sentence and did his 6 months of AA while half dead. His HE was so bad he would not have stood up to the process ALONE.

I took all that on me and it was a struggle for a caregiver. I don't know how you, or David, or Connie have been able to manage alone.

But surely our medical system doesn't mean for folks to die because they got upset about losing their home, having cancer, and unable to get a transplant.

Any chance you can move to near where ex or sis live...give up the home you cannot afford and start this stupid approval process over?

The treatment for the HCC seems to be working, thank god.

Seeing a psychologist or psychiatrist seems a good idea...Mike's wrote letters saying he was good to go for TP and was unlikely to replace to substance abuse...and he still goes..and likes going. He was a total emotional wreck with HE and worry before the TP.

Maybe the psychiatrist would see you in a light such that they'd write a letter supporting your transplant. Or maybe the psychiatrist could add a medication that would help you get through.  Mike has been taking anti anxiety medication now for a few years and it makes a lot of difference. He also takes something for sleep.  He has needed nothing for pain, but it would be provided if he needed it.  He doesn't like to take pain stuff because it is so constipating.

Can you engage your sister to help you convince these folks about how good you actually are. I tell everyone that Mike is hearing impaired and do all his phone work. that makes him nuts and he was shouting at people. When I say he is hearing impaired (and he IS) and wears hearing aids, they talk to me and we sort things out calmly.

Best to you, I'm sorry you are alone just now.

Mama Lama

Oh good, I was hoping Carol would chime in :)

Zoarie keep us updated please!

Hugs,

From what I'm hearing from you is that your biggest stressor is being turned down for a transplant. Why not try another transplant clinic and explain that to them. I'm not sure what else to say. I did make the point to the transplant shrink that I looked at a transplant just like when my car has a broken part; you replace it. He liked that outlook. Keep it simple.

Jade,
Thank u for your understanding and kind words.
I don't know if their way of telling me was harsh or not, but it was certainly a jolt that caught me off guard.
I don't mind seeing the psychologist as it could be helpful. Have seen him twice, third time will be this coming Tuesday, and he is teaching me how to breathe. I sure hope I picked one that is ok...i'll c how it goes.
I am eager to go back and read your history as I don't remember why u r in the group. Regardless, thank u again for your caring, time, and kindness.
Zoarie

Zoarie

When I began process if dual listing at another center, they required me to have all the evaluation tests that were more than one year old. So it took me 3 months for me to get them all done. I ended up being transplanted by my original center in August due to HCC. I had completed testing for Indy but had not been listed with them yet because all the results had not been received and reviewed by their committee.

Hope this is of some help to you.

Hey Zoarie, my comments were made about psychiatry not being helpful for encephalopathy. I find psychology very helpful. Just wanted to make sure I've made the distinction clear because they both start with "psych". For people with psychiatric disorders without any other underlying physical causations, psychiatry is a a god-send. I am not beating up on psychiatry, just pointing out that its not helpful when the medical profession try to encourage you to "use a hammer when a screwdriver is required just because they are out of screwdrivers". Hope you understand my analogy. To save you going back through posts. I have a genetic mutation that stops my liver from metabolising properly. I understand what you mean that there is no nice way to hear "no" when it comes to no TP. (While their reasons seem non-nonsensical and discriminatory to me, I'm truly glad that they make sense to you. YOU understanding them is what matters!!!). Keep up the good fight!!!

 Zo , I sympathize with you on this situation. They were pretty harsh on me with my alcohol addiction and told me straight up they didn't think I had much chance of getting a transplant. As sick as I was at the time internally and visibly I thought a bit of compassion would have been a driving force to make me want to live and give this a try, Not so. Often I felt like I had been gut punched after driving 2-1/2 hours one way waited for hours to go through the gauntlet of testing and etc.

I was told the option of AA was off the table and psychiatric therapy (6 months out of pocket) for alcohol abuse was needed to complete my evaluation. I had chronic ascites problems at the time and getting drained (Paracentesis) every few days at this time. I missed 2 scheduled appointments and phoned from the hospital outpatient wing to the therapists office both times "I am getting drained and can't make it please reschedule". I went through 3 months of therapy 2 times a week and missed 2 scheduled appointments. When TP center reviewed my progress at the 3 month point and saw I missed the 2 appointments I was told "We'll give you a second chance, Start all over". Technically I went through 9 months of therapy just to get to evaluation.

I don't know, Looking back on it all it's bitter sweet. I hadn't touched a drop of alcohol before I went to UNC for at least 4 months. I had know doubt I didn't want to drink again and didn't feel all that "abuse" was needed. I proved to myself I didn't want my old life, The hard part was convincing everybody else. You see as far as I see it, I really, truly beat this thing and got the scars to prove it. Was it hard? Heck yeah!! Was it necessary!! Yes. It reassured me (and them) that I can and will do anything to live. I think I forgot about that along life's way over the years, Loving life and more importantly loving myself.

Now about this "What next to do?". Pick your chin up and get your ducks in order. Whatever hospital you go to your not likely gonna outrun those reports. Duke may here your case and make a better decision, Either way your gonna have to be prepared to fight to get a grip on both issues. The hard part is the hospital, The easy part is getting the unneeded stress out of your life, Be that the house, The X or that squirrel who keeps digging up your flower beds. C'mon Zo, I believe you got it in you to get past this thing or at least give it #@^% trying.

Ziff     

Zoarie, where are you being seen? They are giving you a raw deal. The HCC alone should make you eligible for TP., under certain circumsances (it's the reason I got my TP.)

No, your caregiver does not have to live locally. My sister came from out of state.

If you have Medicaid, they should pay for the TP and meds. I don't understand their concern about your finances. I barely make it in my SS, with no other income.

I just got out of the hospital, but really would like to know more. ESPECIALLY, where you are being seen?

Hugs,
Connie

Wow Ziff!

At my center, they never specifically asked me who my caretaker after transplant would be. I think my hubby was able to come to 2 doctor appts. with me during my five years of care. I took the train downtown and cabbed it over to the hospital. I actually had my parents, who are 80 and 79 respectively but in good mental and physical shape, come up from Florida to help me out after the surgery. They stayed 7 weeks, god bless them. Myhubby was able to continue working so we could pay the bills etc.

My center was more concerned that I could afford the prescription costs post transplant. Even though I have Medicare due to disability right now and they cover the Prograf, the center wanted to make sure I could handle the costs of my Valcyte. They also asked me what I planned to do once I was off Medicare. I told them I hoped to have insurance thru a job or would purchase it on the exchange. Thank God for Obamacare and no pre- existing conditions exceptions!!!!

Susie, My wife was also working during a lot of my visits. I was fortunate enough to have one friend and family to help me out as far as caretakers being present. If you look at the factors Alcoholism/Drugs it throws a whole mix of problems into liver treatment. Doctors are very much aware of the statistics for addicts recovering successfully from their addiction. It may be politically incorrect for them to come out and say it but they place little expectation on us being capable of beating the addiction problem. Hence the proving yourself. A doctor has to play God in these situations. Give a liver to a unproven addict or a child, AIH sufferer or so on. Support is important to recovery in both instances, You don't show that you have support and you have the cards stacked against you in their eyes. Sucks but that's what I believe they are looking at.
I'm not sure about this Obama care stuff and think it's a boondoggle so far. The economy is faltering and jobs are scarce, We are indebted up to our ears. Government cant control there own people under there own noses and I doubt they can control Millions on potential scammers waiting for this to roll out. There is resistance to anything new as with social security and other entitlement programs when it was first tried out on the public. Perhaps it will work but somebodies got to pay for it. A broke government? Jobless Americans? Maybe the Chinese will have mercy on us and pay for it? Ash yourself how well Uncle Sam manages those entitlement programs we currently have. All Hail Obama Care or is it Oh Hell Obama Care, Guess we will find out regardless of the concern either way.

Ziff

Interesting what Ziffle says about ..." they place little expectation on us being capable of beating the addiction problem. Hence the proving yourself. A doctor has to play God in these situations..."

During my last visit to ER for HE they did a psych evaluation because I had such high anxiety and I was belligerent (very unusual for me). When I told the gal I'd gone through a live in 21 day treatment centre for addictions her reply was "only once?" ... like that was an unusual feat. Dealing with the underlying reasons for addiction is the bigger problem. While I don't still go to meetings (it was over 20 years ago) ... I do re-read the materials from time to time .... and if I relapse it isn't with drugs or alcohol ... it's in being able to deal with life effectively.