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Posted 4/9/2007 7:18 PM (GMT 0)
Hi everyone,

My name is Melissa and my father (53 years old) is in end-stage liver disease. He is currently on a transplant list and has been for the past nine years, however, recently he was also diagnosed with a unique (mild) form of pulmonary hypertension due to the cirrohsis. The one hospital that we were trying to do live donor at  have now denied us and we are searching for a new hospital. I pray to God everday that this is not a futile effort and that my father will get a second chance at life. Basically I am just looking for support as I feel like (besides my Dad who I can't stand to see upset or scared so I don't stress him out) I am going through alone. Currently he is holding his own the best that he can but this is so stressful and scary and frustrating. I love my father more than myself and I don't want to watch him die. I want someone to take a chance with us and give my father the living liver donor from me. I don't want to feel alone and lost anymore. So I thought I would post here.

*Praying for every person who has the Hep C virus.

Posted 4/9/2007 8:52 PM (GMT 0)
Dear MissLissa, You are not alone. This is a great forum. My husband also has ESLD and he did make the transplant list for about a month. They had to take him off as his cancer got too big and multiplied too much in his liver. I really know how you are feeling because right now my husband is not doing to good. We had to get hospice involved . But look on the internet for more transplant hospitals each one apparently has it's own criteria for eligibility. Don't give up. I thought that trying to get him on the list was the hardest part. I was wrong by a long shot. Watching him deteriorate each day has our 3 year quest for a liver transplant beat. My thoughts and prayers will be with you and your father............Hang in there. Pink Grandma
Posted 4/10/2007 5:36 AM (GMT 0)
Hi, Melissa! I can't believe your dad has been on a transplant list for 9 years! You don't say where you live, but if at all possible, get to a Mayo Clinic. Besides the one in Rochester, MN, there are also ones in Phoenix, AZ and Jacksonville, FL (the one I go to.) If a living donor transplant is possible for your dad, Mayo is the place that can do it. I am scheduled for a hepatectomy (excision of the right lobe of my liver) on the 30th by a Mayo surgeon who specializes in liver transplants. I'm having the surgery due to liver cancer caused by hep C. At first, I did not qualify for surgery or transplant because my liver function was (and is) pretty good, but also because the 11 x 12 cm cancerous tumor had metastasized to the inferior vena cava (a large central artery.) I had cutting-edge cancer treatment that caused that part of the tumor to shrink back into the main tumor, and most of the tumor is now dead. I am telling you all this to let you know that Mayo loves difficult cases, as it gives them the opportunity to try new treatments and procedures. I participated in a study, which I was happy to do...so that others can benefit from what they learned. I am having the surgery because there are still a few live cancer cells in the rt. lobe of my liver.

Please send me a private message if you would like more info on Mayo.

Hugs and prayers,
Connie
Posted 4/10/2007 3:18 PM (GMT 0)

Hi Connie,

I've heard that about Mayo Clinic and if Pittsburgh denies us that is definitely where we are going. They say on their website that they offer living donor to end-stage liver patients who have other complications because doing it sooner rather than later is important, so we'll see what happens. I would love information about them.

I live in New Jersey, we are going to pittsburgh first because they have an extensive program and are a little more aggressive than the hospital we were at first and they are slightly closer than us. I was approved for living donor there but they don't want to do it now because of the slightly increased risk. There's more to it than that but I don't want to get into it on a public forum.

I'm very happy that you are now going to be able to get this operation. It's so good when there are doctors out there who are willing to go the extra mile for thier patients. I will say a prayer that you come through the surgery well.

Yeah, he's been on the list five years. In the region we are in the wait is over 2 years, but that's only if there aren't sicker people than you on the list. Most of the time there are and at the hospital we were at, if your MELD wasn't above 25, you weren't getting a transplant.

Thanks for all the info.

Pink - Thanks for the words of encouragment and I'm praying for you.

Posted 4/10/2007 7:21 PM (GMT 0)

Hi Misslissa, Welcome to HW. My husband was recently transplanted, 3 weeks ago. There are several centers that do transplants at lower MELD scores. Pittsburgh would be a good place to also be listed at, most centers will allow you to be list in other areas. Being on the waiting list is not easy, and is very stressful! I wish you much luck in doing a living transplant. My prayers go out to you and your dad.

Teresa

Posted 4/11/2007 1:02 AM (GMT 0)
Connie, can you tell me more about Mayo in Jacksonville? (I have no idea how to PM you)That's where we're thinking of going, since the waitlist at the center my husband is currently listed at is so long, I'm afraid he'll get too sick before being eligible for transplant. His MELD score is 19 right now and he won't be offered a liver until he hits VIEW IMAGEat least 25, probably higher because he has type O blood.

Of course, he's giving me lots of resistance on the idea of packing up and going to Florida for 3 months or more. Do you know what MELD they generally transplant at? He told his sister on the phone tonight that "this is all she (I) talk about." Ummmmm.....yeah, it is!

Posted 4/11/2007 1:16 AM (GMT 0)
My Dad got his most recent MELD scores today....its 25.

I don't know what to do now...HUP still might give him a cadaver liver...this is around where they start getting the chance to get a liver but he's on antibiotics for two weeks so they definitely won't do it right now. He now has to go get blood work every week. We won't get our eval at UPMC until May. HUP still hasn't gotten his final cardiac report that says why the cardiologist and pulmonologist believe he can go through transplant so they are still under the wrong impression. I'm going to fax all of his records to Mayo in MN tomorrow for their opinion. The only thing I can do is make sure HUP gets the letter from the cardiologist and wait and pray. It's making me a little bit crazy right now though. So now it's a week to week thing and see what we can do. I'm so confused right now and don't know what else to do.

Posted 4/11/2007 3:47 AM (GMT 0)

MissLissa, I can relate to what you are feeling right now, My husband was on antibiotics and then off, then he started having Cardiac problems, put inactive on the list, then he was reactivated. I started looking into other Transplant clinics, feeling very desperate and stressed out. We got the call about a week and a half after he was reactivated. My husbands MELD score was constantly changing at times it was 23, it would drop, in fact he was transplanted with a MELD score of 15. The Transplant clinic we are going to is only 2 years old, the surgeon is very experienced and has done more than 800 transplants, he is very well documented. The waiting list at the present time has 11, my husband was listed for less than a year, he was listed in June 2006. I know the confusion and frustration, but it does sound like he is very close to getting the call for a cadaver. I do know alot of the clinics are cautious about doing related living donor transplants. The best thing to do is to try to keep him as stable as possible, (not an easy job). Try going to www.unos.org then go to optn, then organ data source, you can find any center in there, I had to play with it, but got information about the different centers and what MELDS they were transplanting at. Good Luck and prayers!!!

apple4u, Welcome to HW, sorry you are having to go through this also! If you need any thing just let me know. HW is a wonderful place for support and information. If I can be of any help just let me know. Prayers and positive thoughts.

Teresa

Posted 4/11/2007 6:04 PM (GMT 0)

Hi

My husband, Lee, is on the transplant list at the University of Pennsylvania.  They have discussed with us accepting a "non-perfect" liver.  Has anyone discussed that with your family?  They told us that at a MELD score of 25 is when we can expect to be vigerously looking for a cadivar liver, and lower for a "non-perfect" one.  I understand all the frustrations you are going through, as this disease has completely changed my husbands personality.  The encephalophy is getting harder and harder to control.  I hate hearing the words, "he's not sick enough for a transplant".  COME LIVE WITH HIM!!!  If you have any questions to ask me I would be happy to help.

Pati

Posted 4/11/2007 6:11 PM (GMT 0)
Hi Pati,

They say he is in the top 10 at their hospital however there is a chance that they won't do the transplant due to his pulmonary pressure. It's all pretty much a waiting game and praying that his pressure is low enough at the time of transplant for him to get it. Thankfully my Dad doesn't suffer SOOO badly from the encephalopathy although yes his personality is changed. I too hate it when they say they aren't sick enough, they have no idea what it is like.
Posted 4/11/2007 10:59 PM (GMT 0)
In the top ten--that would be great news if they'd get this pulmonary hypertension thing straightened out; of course, if they'd get it straightened out you could be his donor and you wouldn't even be going through all this. Pati, where is your husband on the list? Can't believe we're all at Penn, although we're definitely looking at the possibility of going to Mayo in Jacksonville.

Posted 4/12/2007 2:24 AM (GMT 0)
Apple,

I'm glad you decided to go to Jacksonville.

I have this very bad feeling that Penn won't transplant and will take him off the list. If they do that, our chances decrease even more. I reallly hope we can get in to UPMC and I'm praying for a miracle that my Dad's pressure goes down and he gets his transplant.
Posted 4/12/2007 6:32 AM (GMT 0)
Apple, take a look here:

http://www.mayoclinic.org/transplantservices-jax/

If this is against the rules to post a link, I apologize and understand if it needs to be taken off. Sorry, I guess this forum doesn't have PMs (private messages.)

I don't know what their MELD score requirements are in relation to transplant...they just say that eligibility for transplant is a MELD of 8 to 40. Go to the site and look around. You can make your own appt. and don't have to be referred. The Transplant Center is in the Joe Adams Building on the St. Luke's Hospital campus. Mayo is building their own hospital on their site, but it won't open until 2008. I noticed there are 7 transplant surgeons altogether. Mine is Dr. Grewal. I think he may be the Director of the Transplant Center.

Weather forecast is for 86 tomorrow! We just went through a cold snap, though, where temps actually dropped into the 30s a couple of night. We should be back to normal in a couple of days, with seasonal temps in the mid-to-high 70s. Let me know if I can help you with anything else.
Posted 4/12/2007 10:48 AM (GMT 0)

I'm very slowly moving DH out of his inertia about this and I think he's ready to consider Mayo. We're concerned about housing; does Jacksonville have short term housing and what areas should we absolutely avoid? Are there lots of places for rent at the beach?(Might as well have SOME fun while we wait!)

I know Mayo has some short term housing on site; Hep93, do you know anything about it?

Hoping and praying you hear something from Pittsburgh today, Lissa. Your story is exactly why I don't want to wait for DH to get even sicker--there's so much that can go wrong with this whole scenario, and we're so at the mercy of the transplant centers. No one could ever say you haven't moved heaven and earth to make this happen for your dad, though.

Posted 4/13/2007 12:36 AM (GMT 0)
Apple, Mayo has a Marriott on campus, but I know they are expensive. So are rentals at the beach. I'm about 5 miles west of the beach in an "okay" neighborhood, but in a one-bedroom subsidized apt. I don't know of any short-term housing. There's a Ronald McDonald House, but it's a long distance from St. Luke's. That whole area of Mayo and St. Luke's is fine, but aside from the Marriott I haven't noticed any motels. If you call Mayo, they undoubtedly have more info on the housing situation. I know people come from Europe, South America, and all over the U.S. for treatment, so Mayo has to have ideas for housing for non-local patients.

All my best,
Connie
Posted 4/13/2007 1:26 AM (GMT 0)
Yeah, I'd love to stay at the beach for a few months; maybe could pretend we were there for some reason other than a liver transplant lol. Melissa, did you hear anything today from Pittsburgh?

Posted 4/13/2007 1:41 AM (GMT 0)
No nothing yet. i'll let you know as soon as i hear anything
Posted 4/13/2007 3:11 AM (GMT 0)
Hi!! 

I'm new to this.  I've been reading, and it all sounds familiar.  I live in NJ, and my father and stepmother live in FL. His MELD ranges from a 14 - 18. He is currently #1 for his blood type with the 18 score.  He had a recent close call for a tranplant.  They brought him to the OR, and the surgeon came out 2 hours later cancelling the surgery because the donor had cancer hiding underneath his liver.  So they are waiting for the next call.  My stepmother called me tonight because his encephalopathy has worsened over the last couple of days.  He's doesn't know where he is, and is yelling that he want to go home, and nobody will take him. He has been disoriented before, and "giddy", but not to this extent as far as I know.  Has anyone had experiences like this, and how well do you recover once your ammonia levels comes down.  He usually is giddy and off one day, and pretty with it the next after taking his lactulose.   Because he was soo agitated and confused, I told my step mom he should be admitted to the ER to have blood drawn, and make sure his meds are working, or may need to be changed.  My father and her are very difficult to deal with, they hear what they want to hear, and do what they want.  She said she would wait until the morning, unless he seems worse.  I advise her to watch for a change because he could go into a coma.  I'm a RN, and I feel helpless.  Does anyone know any major signs that being comatose is near? 

Thank you

Posted 4/13/2007 1:34 PM (GMT 0)
Hi,

I'm glad your father is close to getting a transplant.

Your mother should not wait to take him to the hospital or increase the lactulose because if he become septic they will not do the transplant until he is better. As for signs, I don't really know, the one time that my father went semi-comatose, we had no idea what was happening until it was too late. He was in the hospital for pneumonia and we were visiting him and he was confused and kept saying the wrongs words in the wrong context. Later that night is when he went semi-comatose. I think it all depends on the person. Knock on wood, but my father seems to handle the encephalopathy pretty well. I would suggest your mother take him to the hospital. I hope it works out for you.

Posted 4/13/2007 11:01 PM (GMT 0)
Nurse, where is your dad? Is he at Mayo by any chance? I"m a rnuse also so I understand your your frustration!

Posted 4/16/2007 2:12 AM (GMT 0)
Welcome all new people:) Connie,that is not breaking the rules because you have no vested interest in the site and it is an informational site. At least thats my interpretation of the rules:)
Posted 4/17/2008 2:01 AM (GMT 0)
In response to the hypertention.... my husband has same issue and by using a machine for sleep apnea he has corrected the issue. He has been on waiting list for 8yrs. We know florida transplants earlier but they expect you to relocate for one year. Also through research of my own and our doctors Acidolpholis which can be purchased in herbal section of Walmart helps to keep bad bacteria under control, even for healthy people when taking anti biotics
Posted 4/18/2008 3:46 AM (GMT 0)
apple4u and nursejersygirl, Hi to you both and welcome to HealingWell. I am RN also so I completely relate to your frustration. As professional caregivers and healers we seem to think we should be able to heal our loved ones too. It just doesn't seem to work that way tho. We stop being nurses and instead we are the daughters, mothers, wives, sisters, etc. of our family member that is afflicted with this (or any) life threatening disease. We seem to have it in our heads that we have failed when we can't FIX THEM. The truth is, we are like a jack of all trades and a master at none. We have to know so much about so many diseases and illnesses that seldom do we work in an area that is exclusive to just one illness with one set of criteria. I know in my case I was devastated when my mother was diagnosed with Hep, chirrosis, and liver cancer. I researched constantly to find out everything I could, I went to her Dr appointments with her as often as I could, I kept everything in files (lab results, Bx results, MRI, etc.). I even made a question list for her and my dad to ask at the visits that I couldn't go to so I would know what was going on and progress she was making. I did fairly well in the beginning but as time went on and she became more and more confused and ill I could barely stand it. My frustration level increased on a daily basis. I just wanted to make her better. My mom was diagnosed in March of 2007 and passed away in November. I was heartbroken and depressed. I was even angry. Here I had dedicated 25 years to helping other people and I couldn't help my own mom. So I share your feelings and understand them completely. The best advice I can give you is to read the older posts on this forum. They are filled with a cumulative knowledge of folks that have researched as well as experienced this disease as patients or caregivers. In my case it was a GOD send when I stumbled on this forum. As I said earlier I simply became a daughter and not the nurse. The members helped me overcome my grief and despair and they were there for me when I need it most. Post anytime and just know that everyone here understands.
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