ESLD-turned down for transplant

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Imp36
Regular Member


Date Joined Aug 2010
Total Posts : 47
   Posted 8/13/2010 6:15 AM (GMT -7)   
I started reading this forum back in 2008 when I had my first liver failure.( I quit drinking and taking anything with Tylenol in it that same day)  I went to get up from the couch and my legs went out and I hit the floor hard. I Tried to pull myself up but when i hit the floor this time I went out cold for 2 days. Luckily my husband,John, was home and called 911. From what he's told me my liver enzymes were abnormal and ammonia level was off the chart and it was touch in go the 1st 36 hours, they'd given me 6 units of blood and 2 of plasma, but then I woke up totally confused.They ran all sorts of test plus a liver biopsy and it was cirrhosis due to alcohol and Tylenol toxicity. I was put on Lactulose and spironolactone. 3 weeks later I was readmitted because both legs swelled up, I couldn't get out of bed and just in my legs I'd put on 40 lbs. Ammonia levels too high again upped the lactulose. In March 2010 I went to Mayo here in Jacksonville for 8 days of evaluation for a liver transplant. my meld score was 13. They turned me down for a transplant because my meld score to too low. In May I started passing bloody stools then started throwing up blood. They banded 7 varices in my stomach. I spent  9 days on a ventilator then released. 2 weeks later it happened again. While in the hospital Mayo said they'd re-evaluate me for a liver transplant and I needed to be scoped every month so they could catch the varices before they ruptured. I went back July 29 and was informed they were not going to re-evaluate me and therefore I needed to find a new Dr. and try a different transplant facility.  They sent me all my records and I read thru them and according to the records I was turned down for a transplant because of one Dr.'s report-the physcologist according to her she felt I was too high risk of drinking again and I had bipolar and anxiety. Now I have no Dr. or transplant.  My PCP is talking to Shands-Gainesville and see if I can get in there.  We have no idea of what my meld score is now. I have hyptensive portal pressure but my cuff BP is low 90/58 so they can't give me anything for it. I also have an enlarged spleen,edma,ascites,hyponatremia,encephalopathy,hepatopulmonary syndrome,hyperthyroidism,osteoporosis,osteomylitis, and sjogren's.  Dealing with all fatigue,not sleeping at night,aches,pains and nausea takes it toll and not knowing  what is going to happen next.  I'm really conserned about  the toll it's taking on John. He's a wonderful caregiver and takes care of everything. confused

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/13/2010 9:31 AM (GMT -7)   

Hi, Imp, and welcome to the forum.  I, too, live in Jacksonville and go to Mayo.  They literally saved my life from liver cancer, but I've never been a transplant candidate.  I'm really sorry that they turned you down, based on that one doctor's assessment.  It's understandable, though, that they don't want to "waste" a liver on someone who might drink again.  I'm a sober alcoholic, sober 24 years now, so I hadn't had a drink or unprescribed drug in many, many years when my liver problems started in '05.  I hope you can get in at Shands Gainesville.  It could be that you have too many other medical problems to be considered a good transplant candidate.  Above all, DON'T DRINK!  Have you been to AA?

If you have your latest lab results, you can go to this site and calculate your MELD score:

http://www.mdcalc.com/meld-score-model-for-end-stage-liver-disease-12-and-older

I hope you or your husband will keep us updated on your progress.

Hugs,

Connie


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

Imp36
Regular Member


Date Joined Aug 2010
Total Posts : 47
   Posted 8/13/2010 10:38 AM (GMT -7)   
Connie-I'm glad you had such a good turn out at Mayo. I really had my hopes up when they set up an evaluation. I've read thru each Dr. evaluations and they all said "Good Candidate for transplant" It was only the one Dr. that said no. I've been on Lexapro for a long time and haven't had any signs (depression or manic highs) since I've been on it. I quit drinking cold turkey and I've been drinking juice or water ever since.I was never much of a drinker until my last husband died in 1997 then I went on a binge trying to kill the pain,self medicating...  Once I was released from the hospital I did go 30 day inpatient to rehab at Ten Brook(I think they have changed their name since then) and I have been going to AA meetings since. I'm 22 months clean and sober.  I take this disease very seriously and do everything the Dr.'s tell me and only take meds they prescribe. They put me on a lot of vitamins Caltrate D, Centrum silver, B complex,B-12,Iron, potassium and when I'm in the hospital they give me shots of vitamin K but I've read somewhere that it just puts more for the liver to process. Is this true? Do you have any recomondations to ease the symtoms like itching all over,fatigue,insomnia or hair loss? I'd appreciate any info or suggestions you have. Thanks for listening.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/13/2010 11:42 AM (GMT -7)   
Hello Imp36 and welcome to HealingWell. So sorry that Mayo refused to reconsider you for transplant. Do not give up. Keep doing everything that you have been doing. How does your PCP feel about your progress since diagnosis? Maybe he can write a letter to the new transplant team, not just refer you. Also the AA meeting that you've been attending, maybe they can write something too on your progress. Don't leave any stone unturned.

As far as your itching and other symptoms ..it's been discussed lot's of times on our forum.... up in the right hand side of this screen you'll see a search area. Type in itching and liver disease......it should bring up some of the posts. Do it with anything that you want to find more info on.

All the vitamins and minerals except for Iron sound like the norm for a liver patient. They told my husband not to take any vitamin with iron in it. Ask the doctors when you go to your appointment with Shands. But with all your other conditions it maybe the reason for taking it.

So glad that your husband is a wonderful caregiver. Let him know that he is welcome here too. We have a bunch of caregivers and former caregivers as members.

Take care......thoughts and prayers.........
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 8/13/2010 1:19 PM (GMT -7)   
Imp, I would suggest the same things as PG. I haven't had hair loss and only occasional itching. The vitamin K in the hospital was most likely for a clotting issue. Most liver patients do not take iron supplements, not even in a multivitamin...so check with your doctor about that. After surgery and while in the hospital, I've been given iron supplements due to blood loss during surgery...but not after discharge.

BIG congrats on your 22 months! WTG!

Hugs,

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

Post Edited (hep93) : 8/13/2010 3:55:58 PM (GMT-6)


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 8/13/2010 11:14 PM (GMT -7)   
IMP36... I had heard that people with mental health issues would be "screened" out for transplants as not being "good" risks... I believe someone with your history of mental health stability would have a good case for fighting this... and possibly a strategy would be to go to a different psychologist... or one that you have seen who would give a different opinion... to counter the other... but before apparoaching another transplant facility.. if that makes any sense... also.. I think that advocates for people with mental health with would be very interested in advocating for your right to be a candidate... but you must document your "stability" through the "experts".. I speak from being a counselor and having PTSD and anxiety disorder for many years though I choose to be unmedicated... just to give you background.. and I just lost my partner to this disease on April 22 this year... hope that helps.. there are ways to make this happen..and one doctor report certainly shouldnot hold you back.. prayers are with you Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

siloamsandy
Regular Member


Date Joined Mar 2010
Total Posts : 46
   Posted 8/15/2010 1:11 AM (GMT -7)   
I agree with everyone else. I would definitely try another facility. Your PCP could do your liver panel tests. That way you can keep track of your MELD score by using the calculator at the website that hep93 suggested. I had my transplant in June of this year and based on my last blood work done at the hospital, I checked my MELD score (being curious) and it was at 9. Of all the blood work I've had done since, I've not seen the results. When I go to see my transplant dr next month, I'm asking for copies of them.

Congratulations on being sober for 22 months!!! Keep it up!!! Things will happen for you, I know it. May not be in the time frame you have in mind, but it will happen.
When I finally got my transplant, the drs said that I would have been dead within 2 months if a liver had not come available. So, see?
It'll happen for you too.
Sandy
God never gives us more than we can handle.

Imp36
Regular Member


Date Joined Aug 2010
Total Posts : 47
   Posted 8/15/2010 8:20 AM (GMT -7)   
Hep93- thanks for the website. It said my meld score is 11. Is it common for it to drop a few points?

I was originally under Shands care. All my Dr. were/are working for Shands and I liked that because they all had access to the same records,labs and medication so one always knew what the other one was doing. It was working pretty good until my GI moved and so did all the GI in that office. I was stuck with this Dr. that I needed an interpreter/translator with. My PCP got me an evaluation with Mayo and I thought everything was going to be fine. I go to see my PCP tomarrow. John has already filled her in on what happened with Mayo and has received my records from them. We'll discuss where we go from here. Thanks for all you info and kindness. I'm glad I Found this forum.

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 8/15/2010 9:20 AM (GMT -7)   

Hey Imp.... just advocate for yourself...quietly firmly point to your long term stability... and just push the point.. and yes I thank God for the day I found this forum... I don't think I could have gone through this alone... remember usually someone is here 24/7 or will be within a few hours... but prayers ur way... sounds like things are moving a little... take care... Sandi


There is no pit so deep that He is not deeper still... Corrie Ten Boom

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/15/2010 11:08 AM (GMT -7)   

Imp, MELD scores do fluctuate up and down.  I had some very bad experiences with Shands Jax and now do not trust them to do anything invasive.  My PCP is there and I get my mammogram and Pap there, but that's about it.  Mayo does all my blood work, MRIs, etc.  I've found them to be really wonderful.  I've had 2 hip revisions there, too.  I have heard good things about Shands Gainesville regarding transplants.

Do 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

Imp36
Regular Member


Date Joined Aug 2010
Total Posts : 47
   Posted 9/23/2010 8:29 PM (GMT -7)   
My PCP finally got me a new liver Dr. not under the Shands umbrella. I hadn't had a liver Dr. in 2 months (since Mayo had turned me down for a transplant). I brought him all my records from Mayo and he set e up for an endoscopy the next day.  By the time we were done with appointment he told me he was sending me to a specialist at Shands Gainesville.The new Dr. in Gainesville (Dr. Clark)  felt there was more going on than just ESLD.  She is the 1st Dr. that looked at the whole picture. Every time I'd tell the other Dr.'s new symptoms that had popped up they'd always tell me it was either due to the ESLD or Sjogren's never looking outside the box to see if something else maybe going on too. This was just a consultation to see if they would evaluate me for a liver transplant. She has all my records from Mayo and from my new liver Dr. in Jacksonville. She asked me if I was experiencing some other symptoms and they were all ones I had told the other Dr.'s about.  She ran a series of test focusing on my heart, lungs and liver. She was the first to take notice that my lips were purplish/blue and so where the palms of my hands. The other Dr.'s said it was related to my liver. She called me this afternoon with the test results. Not good.My meld score was 11 but my liver was the least of my problems.  I have pulmonary arterial hypertension and the oxygen in my blood is only 62%. This is a quick advancing disease. My lungs get enough oxygen to the right ventricle of the heart causing the heart to work harder and enlarge the heart and weaken it. It damages the lungs too,there's no cure for it they just try to keep the symptoms in check. Because it is such a quick progressing disease must people don't get a heart/lung transplant. They are sending me to a Pulmonary specialist at Shands Gainesville. I still need a liver transplant but this being a more serious disease they have to get it under control first. Thanks for listening.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/23/2010 9:20 PM (GMT -7)   

Imp, thanks so much for the update!  I'm glad to hear you were able to get a new liver doctor.  I'm really sorry about your pulmonary/heart problems.  I hope they don't prevent you from getting a transplant, but hopefully they can be controlled and you will be eligible for one.  BTW, as long as you're going to AA meetings--you need to document your attendance.  Make up a form of some kind with your name, dates/times of meetings you attend (to be filled in), perhaps the type of meeting (CD, OD, 12-Step, etc.) and have the chairperson sign it.  This way you will be covered if and when you do get evaluated for transplant.

Please keep us posted on your progress!

Hugs,

Connie


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

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 9/24/2010 6:46 AM (GMT -7)   
wow thanks for coming back.. and I'll be praying for u... glad you got more informatioin about what is going on with you... Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

sd grandma
Regular Member


Date Joined Jan 2010
Total Posts : 23
   Posted 10/1/2010 10:46 AM (GMT -7)   
has anyone else been put on oxygen & why?  My dx was in Jan 09. kinda on a holding pattern w/tramadal,diovan,norvas,laculotose & remeron until Dr put me on O2  24/7 due to O2 levels.Iam esld with a last meld score of 16

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/1/2010 2:03 PM (GMT -7)   

SD, If you are not getting enough oxygen in your blood (and thus not enough in your brain), you need the O2.  I believe that's a separate issue from liver disease, at least until the very end.  You do have pulmonary problems, so that's probably why the need for O2.

Hugs,

Connie


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

Imp36
Regular Member


Date Joined Aug 2010
Total Posts : 47
   Posted 10/1/2010 5:31 PM (GMT -7)   
SD, I also have ESLD and was put on O2 24/7 this week. I went to Shands/Gainesville for a consultation to see if they would evaluate me for a liver transplant.  One of the test they did was a blood gas test. I had 62% O2. On the finger reading I had 88% which they considered low that's why they did the blood gas test. Dr. said I had Pulmonary arterial hypertension (PAH) and that had to be dealt with before the liver.  Your O2 has to be a certain % before they can continue with the liver problems and the O2 therapy has already helped me.  If you're a smoker you have to quit.  Good luck and let us know how your O2 therapy goes.  Do you know your O2 %'s ?

whitegril
New Member


Date Joined Oct 2010
Total Posts : 1
   Posted 10/18/2010 1:59 PM (GMT -7)   
smurf  hi i am new to this form i hope i am in the right place. her gos my husband has  esld  he was relly bad for a long time when we frist found out about 3 yrs. ago his meld scoure is 17 back in june or july now he is doing fine doing alote more then he has in years the thing i dont get is he went to the doc about 2 weeks ago he told him he could not feel his liver is getting better? i could not go frist time but he never asked why does any one have a idea?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/18/2010 3:16 PM (GMT -7)   
White, welcome to the forum.  However, I would like to suggest that you start a New Topic to introduce yourself and your husband's situation.  When you post on someone else's thread, you can "fall through the cracks" and not get the answers you are seeking.  Just click on New Topic instead of Reply.
 
You might also want to check out the Caregiver's Sharing thread for support.
 
As to your husband's doc saying he could not feel his liver, this could mean that it is no longer swollen, especially since you said he is feeling better and doing more now.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland
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