Long Wait on Transplant Lists in Pa

Hi All,
Im a little frustrated , My husband is very sick with Chorosis along with Hep c . We are on the transplant list in Philadelphia . His meld is 25 . He has been hospitalizes 4 times since November . His Potasium , Low sodium . swollen legs, stomack like he swallowed a watermellon. The sodium gets low , they take him off the water pills , potasium goes up , he went to icu , water pills stopped , They said he is very sensitive to water pills , hopefully he can go on next week and only take 1/2 of lasix and spirilatone. The newest sympton is majors spasums in his calfs , and his hands, He is so frustrated and My heart is breaking. Now we were told his like number 50 on the the list for A blood types . The Unos doesnt consider the hospitalizations of how sick the people are only the meld score. I am besides my self. Now they wanted us to check out Jacksonville , fl because his sister lives there, its a shorter wait. Out insurance would cost us thousands of dollors as co-pays. any ideas my friends?//

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Does your husband have Hep-C. I had a MELD score of 25 but was able to get an "extended Criteria" liver. That is a liver that has HEP-C, that anyone that did NOT have Hep could not use. The doctors would probably have already asked that though. Best of luck to you.
Dad1110

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You can usually get an exception on the insurance if the DRS are recommending the move. Praying for Mercy and comfort for you and your husband. Try calling the insurance co. What do you have to lose? Raise a cain if necessary! God help you!
Jed

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I called the insurance and there is a $1500 deductable for out of area , no participating facilities. It would have to be approved first and then the insurance company would only cover 70% and we would be responisible for the balance. .
Dad . we also said we would take a Hep C liver , yes he had that too, but the doctors have to check the liver first . He just keeps on getting bladder infections too. This is horrible . We are putting it in gods hands .

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I came down to Atlanta after spending 3 years on the list in Boston. I have had a MELD where they could call at anytime...... ugh.
I have missed a good amount of my kids Teen years, so I have decided to Head back to Boston and let the chips fall where they may.
If you decide to go to Jacksonville you will likely get the liver. They will expect you to stay for six months after, unless there is an agreement with your home hospital. There are many things to consider so discuss them with the old and new hospital.

I wish you guys the best of luck and will pray that it works out for you.

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Dees,

Cramps are improbably due to electrolyte problem--either potassium or magnesium. I looked into multiple listing as my meld is 19 and I have blood type B. In Chicago, I need to be at 25 to be at top of the list. I have been waiting two years on the list. My tc in Chicago will not guarantee they will take me back as a patient if I have it done elsewhere. They don't wan to be responsible.

I am fortunate that I never have had ascites just edema in my ankles and feet. I had a portal vein clot they removed via a tips procedure and now, I have another clot in my superior mesenteric vein they are watching along with two lesions on the liver. I also suffer recurrent UTI's and kidney stones so I can relate to your hubby.

My cirrhosis is due to a rare liver disease called giant cell hepatitis. I am 51.

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Have you checked Pittsburgh? I have heard good things about them

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Dees510, multiple listings within your insurance company's In network is an option. Indeed check with Pittsburgh, register WITH UPMC and West Penn Allegheny.

F.R.O.G. Forever Rely On God to guide you and place you in the hands of the healers and caretakers!


Bo

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What is upmc

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University of Pittsburgh Medical Center...also Cleveland Clinic is an excellent transplant facility with low meld score options. I live in SF California where a meld score of 25 puts you low on the list so we are forced to go out of state. Been on list for over a year with no movement. ::sigh:: it can be very frustrating!

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Cramps can also be a sign that his sodium has dropped... my husband has a MELD of 25 and sounds very similar to your husband... Mine also has the problems with the water pills and they are constantly changing them to find that perfect dose... He was in and out of the hospital all through August-October... and then one day, he started stabilizing and hasnt been admitted since... There is hope that it will get better... Have you asked the insurance company if there is a hospital that is in your network that may have a shorter list? I don't know if that will work, but it wouldnt hurt to ask...

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Cramps can also be a sign that his sodium has dropped... my husband has a MELD of 25 and sounds very similar to your husband... Mine also has the problems with the water pills and they are constantly changing them to find that perfect dose... He was in and out of the hospital all through August-October... and then one day, he started stabilizing and hasnt been admitted since... There is hope that it will get better... Have you asked the insurance company if there is a hospital that is in your network that may have a shorter list? I don't know if that will work, but it wouldnt hurt to ask...

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Dear Cfhoney,
I was diagnosed with Autoimmune Hepatitis over 10 years go. I took meds for 2 years, stabilzed then it flared with a vengence and my Meld score went to 32. I was 1st given 3 days to liveo then transferred on the 3rd day to Stanford and given 2 weeks if a donor became available. I have had every side effect, tumor (brain/jaw), eye surgery both eyes, hypothyroidism/hyperthyroidism. diabetes....you name it i have had it. The doctors say it is a miracle I am alive, my liver is 100% decompenated. Try to take one thing at a time and try to find a way to get some relief, then move on to the next. Try to get an advocate, maybe your liver doctor who can run interference with all the doctors that get involved. It take a lot of work, sweat and tears; In the meantime it is so important to do everything else you can to keep the rest of the body strong. Diet, exercise, a good support system. I was albe to reduce my Meld Score from the #1 spot (there for 10 months no donor) to a 9, pretty adequate functioning which the doctors cannot explain. Never lose hope. Try other hospitals, they have financial assistance programs to offset the costs if your insurance does not cover. Look for a Nurse Advocate in your area that can point you in the right direction and never forget to take the time to take care of yourself too. My prayers are with you.

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Have you considered a living donor? I had PBC and Autoimmune Hepatitis for 20 years and had to have paracentesis every week of 2012 until just after Thanksgiving 2012 when my 22 year old daughter donated a lobe of her liver to me. We are about 2 months post transplant and I feel awesome! So does she. The last two years were very difficult and I was very sick...my MELD score was very low and I was told I would not survive waiting for a deceased donor liver. You should look into living donor options. Univ. of Pennsylvanis Hosp - UPENN - has a fabulous program. It saved my life. There are 17,000 people waiting for livers and only about 7,000 available livers. Please look into this option. The donor needs to be between 21 and 50, compatible blood type, and BMI under 30 I think. They obviously look at other things - non smoker, not a heavy drinker, general good health....oh, you can't be a donor if you've had your gall bladder removed. Please think about this. It is truly a life saving option. God bless and prayers sent your way.

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Hi Folks I have some portal vein issues/small varices and they want me to take Beta Blockers..
Has anyone taken these and feel some are better than others ? Interested in not
being sluggish and impotent.. My Hep C is still undetectable.Thanks

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Lovemydoner...We are at the university of Pa . He is in the hospital again for Very low sodium. He is on fluid restriction. We didnt know too much fluid makes the sodium lower . My husband was eating ice pops and I wasnt watching him . I think mabey the cramps and more confusion was caused by the low sodium . My sister in laws all offered to be a live doner , but the are older , so its not an option . I am just praying everyday along with hundreds of people we know. Miricals happen . We need a liver :)

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So sorry that living donor is not an option :(. It is very frustrating as the patient and I'm certain, for you as the caretaker! I had no options other than my daughter as all my siblings were older than I am ( over 50). If he can get transplanted in Jacksonville, I'd check with insurance as well if the drs can document the need to go out of network. It is possible that his MELD score can jump rather suddenly and he would go up the list quickly. My thoughts and prayers are with you. Say a lot of prayers, I never imagined I'd be recovering this well so don't give up! BELIEVE he will get the transplant...PENN is awesome so you are in good hands!

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Carley - I took low dose nadalol - a beta blocker for portal hypertension and I had no issues.

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I Love Penn and Kelly my Coordinator She is the Best!!!!

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I had Kelly too! She IS THE BEST!!! I will pray for you and your husband ;) Let me know if I can be of any help.

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Thank you ..Lovemydonor..V.A. doctor gave me atenolol..25 mg.Told me to take half of it..See how things go..Thanks again.
Did you ever have varices ?

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