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Mariel
Member
Username: Mariel

Post Number: 78
Registered: 02-2008
Posted on Monday, October 10, 2011 - 12:12 pm:   Edit Post Delete Post Print Post

I am soOooo frustrated with the toggling on the liver Wait List. Huz has been waiting for 4.5 years, anywhere between MELD 13-16 for the past few years. It's like we are climbing up a muddy hill, and every time we make some ground, we slide backwards. I know in HIS world, Huz is still mostly functional, but in MY world, I feel like I've already lost the husband, partner and father he was meant to be. All this wasted time is wrecking our relationship, also that with our children (ages 10-11-12). I don't know how much longer I can keep it together. We've basically lost hope in the liver donor system, a system that doesn't account for time served or emotional despair of a decent family.

We have a big Hepatologist appointment tomorrow and I totally respect our doctor, but I feel like going in there to not only rattle the tree, but kicking the whole tree down! While Huz has been an exemplary patient and I have always been a business-like strong wife, I feel like I'm gonna lose it and show him how much this on/off and up/down the Active List is TORTURING us. It's like I'm living in a cartoon world, just watching the calendar pages fly off into the wind. We are 45 years old, Huz has been sick for most of our marriage, since 32. We are completely lost, despondent and broken with no end in sight.

Huz is approaching the disability threshold, and we are worried about starting that time ticker. At this point, we are NOT confident that he will even be transplanted before Cobra benefits would run out (35 months away), so HUZ feels already like a "provider failure." And after 35 months, I would have to find a job with benefits, possibly when caring for Huz may become critical. We are seriously considering multi-listing right now, just to increase our odds of getting a call, somewhere, anywhere. But MELD 15 just isn't good enough really at any center in the US, so I know this really isn't a great solution at this time.

I know I am rambling and venting, but just wondering if there are ANY other loopholes, suggestions or ways to speed up this process before it literally kills him or emotionally destroys our family. Even if just maximizing the MELD score. Don't take this the wrong way, but I just wanna scream if 1 more person says "hang in there." Enough is enough already.
Mariel, wife of PSCott
www.caringbridge.org/visit/scottcarr
Stanley
Member
Username: Stanley33572

Post Number: 1
Registered: 10-2011
Posted on Monday, October 10, 2011 - 03:52 pm:   Edit Post Delete Post Print Post

Mariel: I feel your pain, much of what you have described has happened to me in the past, not quite to the extent you are describing but to the extent the frustration has caused. I don't know if I can help, there are so many questions that need to be answered, but I will try to see if there is anything I can do.

About the MELD. Has it been computed based on blood work or a biopsy? My wife's could not have a biopsy because of low platelets, bleeding would have been a problem. However the biopsy is probably the most accurate way to determine the seriousness above just computing MELD from blood work.

My wife's MELD was 12-15 but because of her failing health our Hepatologist turned us over to the Transplant Team. They in turn, decided to appeal to the regional organ center for additional points. This was after her TIPS procedure which is used in considering providing more points to a candidate. On question they consistently asked was about her encepalopathy and is she having trouble remembering who I was. That is a major sign of end-stage liver disease and if that is happening to your spouse, that could possibly afford him more points.

What part of the country are you in. Major city locations have longer waiting lists. More remote sections have shorter lists. Originally we were in Philadelphia and the movement was slow. We moved to the Tampa Florida area and the process speeded up. Multi-lisiting is definitely something to consider!!

My wife waited 3 years for her new liver. Our children are grown so we didn't have that additional burden during her illness. I watched her grow sicker and sicker until she spent most of her time in bed. I was her caregiver 24/7. Had I had children the ages you have, I probably would have feelings to match yours. My life, as yours, stopped. Constantly seeking a solution to have my wife cured and watching her slowly die, there were times I wanted to scream and there were times I gave up hope. We had very good insurance so that was another burden we didn't have to face. Your insurance situation appears to be intolerable.

Are you taking anti-depressants??? There is no way a person can endure what you are going through without some type of medication. Our docs MADE my wife take them and then encouraged me to use them. I didn't have the need, but I didn't face what you are reporting. They do help!

Do you have a good network of support? Brothers, sisters, Mother, Father, any relatives that can help you get through this. Without a support group, this is overwhelming and so difficult to endure. The children cannot provide the level of understanding that an adult can. Are you religious? Get your Pastor, Priest or Rabbi involved if you have a strong belief in faith.

This is just some things I thought you may find helpful but I know you probably have this information already. Outside of this, 'hang in there" is something people say when they really don't understand what you are going through. They don't know what else to say and it also got on my nerves after a while.

Finally, like it or not, you have to be the rock. Holding the family together is such a draining job when someone is so sick but the alternatives are worse. Try to take care of yourself if at all possible. f you get sick your life will collapse around you and your children will pay the price.

Good luck with your appointment, I wish you the best. (Please excuse some of the spelling)
jj_bytes
Member
Username: Jj_bytes

Post Number: 16
Registered: 11-2010
Posted on Monday, October 10, 2011 - 05:03 pm:   Edit Post Delete Post Print Post

Mariel,
I'd like to give you a view from the other side of the fence. I've battled Hep C for over a decade. I've been part on numerous studies and used all of the medications (except the newest "cocktail" protocol) to no avail. I had a cirrhosis level of 4 out of 4 (6 out of 6, depending on the scale use) and liver cancer. All of this was a decade long roller coaster emotional}ly. It took almost a year to actually find the cancer my blood work indicated. All that said, I never was in the hospital nor missed work I couldn't cover with leave time. There's no doubt that scenario helped my wife.

I start on the list with a MELD of 18 and was transplanted at 28. I live in Chicago so MELD needs to get pretty high. The good news was the wait was only 11 months. I was transplanted this last June and then life really changed! The procedure went great and I was in and out of surgery within hours. Since then, I contracted on set diabetes, continue to retain fluids and slow slight signs of rejection along with constant redosing of all the medications. My wife has been my friend, my nurse, my driver and main support through all this. It has been very, very stressful for her.

I don't want to frighten you with all this. My transplant team told her from the beginning that this whole thing would be worse for her than me. I'm an active participant, she has to wait, watch and worry (to the extent she chooses to). If you can afford to mult-list (this can be costly) do so. Look for teaching hospitals that may be able to work with you financially there. Is your husband a veteran? The VA does transplants, but my understanding is you really have to push them. Waiting (which is unavoidable) and worrying (which never changed anything) will only sap your strength for the demands of post transplant.

Stanley's suggestion about support is spot on. If my wife didn't have her sisters to talk to and attend a transplant group at the hospital I can't imagine where she'd be. There's no denying this process isn't a challenge but try and do the best you can for you in the now. Right now, your husband is doing OK, and you have this precious day. Yesterday is history and tomorrow's a mystery so try and live in the now moment and be grateful for the gift. Trust and have faith in what ever Higher Power you have, because I can tell you first hand, that when you're sitting in the hospital after you've gotten the call and are waiting for that surgery it becomes very clear that the result was always in God's hand!
jj_bytes
Loyola Hospital
Liver transplant 06/09/2011
Never Quit
Member
Username: Smilinglady

Post Number: 8
Registered: 08-2011
Posted on Monday, October 10, 2011 - 11:42 pm:   Edit Post Delete Post Print Post

Mariel: Its totally OK to have a melt down and complain with this group. You are so absolutely right that the system doesn't work and is frustratingly slow. The problem is the lack of organs which is getting worse while the list of candidates keeps growing. I don't know what we can do to solve that. LIke all of us, I'm sure you hold it together 99% of the time, but sometimes its just too much. One of my lowest moments is now kind of funny. During the evaluation process I was told that my protein is too low. The PA (a man) said I should eat more meat-especially red meat. I said I'm not totally a vegetarian but I can only eat a few bites of meat. So his answer was that I should just have the piece of steak handy and chew on it all day long. I can hardly think of anything worse. I started crying on the car ride home (and I rarely cry) and it went on for hours. All I could say, while sobbing, was that I can reduce sugar, cut out alcohol, quit working, accept travel restrictions, have major, major surgery, but I CAN"T chew on a piece of meat all day! I just couldn't stop crying and my family thought I was totally nuts.

I also want to let you know that your note helped me because I am the pre-transplant and tend to forget how hard this must be on my husband.

If the people who tell you to just hang in there are not pre or post transplant, then I say they're well meaning but don't know what they are talking about.

If they are in our world, that's because they know that is all you really can do. One foot in front of another.

We just started going to a support group at our hospital and like it a lot. Its filled with laughter and very tough people...really a group I'm proud to be part of, although I would rather have never heard of the group..

As to anti-depressants, we don't take them although we may be missing the boat and I encourage you to explore that avenue.

Finally, this sounds strange but I know of somebody who waited here in Washington for years (which is now transplanting at 25 to 28 ), got fed up, researched the states that don't have helmet laws, went to Indiana, and was transplanted within three months.

So hang in there and keep in touch.
Mariel
Member
Username: Mariel

Post Number: 79
Registered: 02-2008
Posted on Tuesday, October 11, 2011 - 05:58 am:   Edit Post Delete Post Print Post

Thanks everyone for your time to reach out and respond! Each one of you hit a point that resonates with our situation and has soothed me, reminded me of the things that are going right. Yes, we are in a small city where the MELD is 17-18 (although it was 15 when Huz got listed 4.5 years ago). Yes, we do have great benefits that allow multiple listing. Yes, the benefit to 4.5 years waiting is that we have saved enough $ for subsequent disability shortfalls. Yes, I do keep it together 99% and are blessed to be a stay-at-home mom to manage the extra load. Yes, we do have supportive families, albeit far away, and more importantly, terrific church family, friends and neighbors.

The frustration lies with the extensive time waiting for a liver, the "everything on hold" mentality with daily/weekly/monthly health uncertainty and complete open-endedness. Worry is unavoidable for the caregiver, especially as time goes on (what will be the next emergency?), and worse-case planning has got to be a thought with our children's future in the fray. Our too, at 45 we have 1/2 of our life left to live. Hopefully.

It is for the kids that I am mostly sad. I can put my years on hold (begrudgingly) and rationalize the poor health and subsequent ill-mood. But they don't have the maturity and sensitivity yet to fully comprehend the gravity of their Dad's situation. They only go to me for every little thing, thereby increasing my load, physical and mental. They act out and take advantage of the dysfunction. They cannot remember Dad even remotely well and wonder why I married this tyrant (their perception of his moodiness). It is hard to keep strong and explain that Dad will get better when I myself am losing faith in the system, that it will all work out one day soon.

So it is for entire family that I feel the need to get selfish and seek alternatives. I am comforted by your words of support. You've given me a piece of meat to chew on, ha! Well, I better get ready to kick that tree down now. Thank you from the bottom of my liver. :-)
Mariel, wife of PSCott
www.caringbridge.org/visit/scottcarr
papillonbleu
Forum Leader
Username: Papillonbleu

Post Number: 2075
Registered: 10-2007
Posted on Tuesday, October 11, 2011 - 01:44 pm:   Edit Post Delete Post Print Post

I just want you to know that I will be sure to keep you, your husband and your family in my thoughts and prayers. Dealing with these situations is never simple, but do remember you can always find a shoulder here on which to lean whenever you have need. I think we all have times when we just need a release from everything piled on top of us by life, and you are especially dealing with a bunch. This community can be here for you at those times and any other time. Many hugs and wishes for strength and peace are being sent your way on the wings of hope.
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital

Stanley
Member
Username: Stanley33572

Post Number: 2
Registered: 10-2011
Posted on Monday, October 17, 2011 - 06:31 am:   Edit Post Delete Post Print Post

Mariel: Just curious, how did the appointment with the Hepatologist go? Better news or just the same old stuff?
Mariel
Member
Username: Mariel

Post Number: 83
Registered: 02-2008
Posted on Monday, October 17, 2011 - 10:59 am:   Edit Post Delete Post Print Post

The Hep appt went well from the perspective that he understood our need to multi-list. And the 2 centers we had already zeroed in on (Mayo/FL and VCU/Richmond), he had positive relations with both and could continue to serve as our Hep. After the initial month/2 of post-TX, local follow-up care will be easier on us. He was gonna write referral letters on our behalf.

Not that MELD 15 is gonna git R dun really anywhere, but down the road when Huz's MELD increases, it will be key to have these processes already in place and 2 other centers looking out for him. So that is comforting to still have alternatives out there.

It's a lot to sort out, statistics and logistics, and certainly the paperwork and onsite evaluations take a few week's time, but I am glad we reached this boiling point so the next time he hits MELD 16+, maybe we will make progress. At least we will have no regrets that we didn't pursue all avenues. Also, I've let go of the guilt of feeling greedy in doing so. My family is worth it and my Huz will honor his donor, that I am certain!

BTW, multi-listing isn't all that hard, it's just doing the research based on what might work for your situation. Especially if your insurance covers it, I'd say Go For It! For anyone reading this, I'd like to offer my input on how to systematically go about this, also strategically to increase your reach. I feel like I know the UNOS rules up and down, also the OPTN and SRTR systems proficiently. Private message me.

Stanley, thank you for following up. I realize I sounded pretty looney last week, so I appreciate all you guys talking me down off the ledge. I did just take a little Xanax too; you're right, it helps in this overwhelming situation.

See ya 'round the keyboard! eHugs!
Mariel
Mariel, wife of PSCott
www.caringbridge.org/visit/scottcarr
Stanley
Member
Username: Stanley33572

Post Number: 3
Registered: 10-2011
Posted on Tuesday, October 18, 2011 - 09:58 am:   Edit Post Delete Post Print Post

Glad to hear you are making some progress. Just some more info to give you that may or may not have any bearing. Our Hepatologist, from Life Link of Florida released us to the Liver Transplant Team, also of Life Link, and we saw them exclusively before the transplant and since the transplant. Before the transplant they spent time telling us everything we needed to know about the upcoming transplant, which could have been a week later, to a year later. We met the support team of past liver transplant receipents and we had our own Liver Transplant Co-ordinator. Since then we see them weekly, sometimes more than once a week. They closley monitor my wife's medications and have cared for her many other issues commonly occurring in transplant patients. We will be with the Liver Transplant team for about a year or more until she is consistent with medications. The reason I'm telling you this is because our Hepatologist told us, "There is nothing more I can do for you, you need to be in the hands of the Liver Transplant Team". And we will not be going back to our Hepatologist, only our Liver Transplant Team and co-ordinator. Hopefully, your Hepatologist will be able to give you the care you need after the surgery. The amount of medications and blood testing after surgery to prevent rejection can sometimes be overwhelming and you need, and deserve, the best support team possible. We have one, and thank GOD. 2 months of post-transplant appointments seems a little low.

As I said before, we are in Tampa Florida. There are three very good transplant hospitals here. The best is in Miami, the second is Mayo in Jacksonville and third, Tampa General. I know nothing about VCU but Mayo has a fantastic reputation for Liver Transplants. I've been told many times that Miami has the shortest waiting list. I cannot confirm that however.

And no, you do not sound looney!!!!! You want to hear looney?? My wife had suffered an episode of ICU psychosis, she called me and told me that the nurse had kidnapped her and took her to a cult and pleaded with me to call the police and get her set free. When I tried to explained that she was still in the same room in the ICU, she called me every name in the book, and some I didn't even know she knew, because I wouldn't help her. She also threw some things at me the next day. Now that was looney! They don't tell you about that before the surgery.

You are doing some great leg work and preparation that should pay off later on. Continued good luck.

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