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Melissa's husband has HCC and may need to transfer to MAYO JAX from MGH. Any advice?

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Posted 5/19/2014 6:54 PM (GMT 0)
My husband was diagnosed with HCC last August. The tumor was looked over by the PCP and we asked for a second opinion at Mass General Hospital in Boston. They also preformed a chemo embolization and microwave ablation and were able to kill the tumor but now my husband is running on about 30% of his liver. He was listed and has a natural meld score of a 17 but consider him as a 25 (june will be 27). Right now he struggles with his electrolytes and encephalopathy. It is so difficult. We had a dry run last week and it was from the secondary waiting list (slightly damaged livers or fatty livers). They prepped him, gave me his wedding band and wheeled him down to the OR. Then 45 minutes later.... sent him back up to the General Medicine floor. It was terrible, but It means we are one step closer to a transplant. The MRIs that are scheduled every three months see no activity of cancer anymore. The wait is just terrible and I want him to get well again. We are also getting him listed at the MAyo Clinic in Jacksonville. Been trying to work and care for him and am utterly exhausted. All of you hang in there and keep the faith. Just needed some people to talk to that have gone through or are going through similar situations. Thanks.... "melissadillon"

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Melissa, I've copied your post into a new thread all your own. We have several patients and caregivers with knowledge of both MGH and the MAYO JAX alternative. I'm sure you will find help and support here.

Mama Lama
Posted 5/19/2014 7:01 PM (GMT 0)
@ Mama, I posted to Melissa at the same time you were moving her thread. Brilliant minds, and all that, haha.

Hi Melissa, welcome. What is happening with the possible move to Mayo JAX? That sounds like a good idea, and we do have a poster, Mae, that took her brother from Mass Gen to Mayo JAX for his transplant. Glad you found us. Big Hugs
Posted 5/19/2014 9:56 PM (GMT 0)
Hi Melissa,
I had my liver transplant at MGH almost 5 years ago. My hepatologist is Dr. Pratt and surgeon Dr. Hertl, though he just moved to Chicago. Dr. Elias was involved with my transplant and now I see him, though it's only once a year. I can't say enough good things about MGH. They are the #1 hospital in the U.S..

At one point, it was suggested that I move to Jacksonville and hook up with Mayo. I contacted Mayo, but stayed at MGH and I'm glad. Moving to Jacksonville would have been difficult for me at that time, as I was very sick. Also, Mayo let a friend of ours (Connie) down in my opinion.

It sounds as if your husband has a good chance of receiving a liver at MGH, since his MELD is going up to 27 in a week. I'd contact Mayo and make a connection, just in case things go south, but stick with MGH if at all possible. Feel free to contact me if you want more information,
Posted 5/19/2014 10:35 PM (GMT 0)
Hey Melissa,

Our Moderator emailed me to jump in here. All that David said....yes Mayo let our Connie down big time. Though Connie wanted to do things her way, I feel they dropped the ball when it came to really important issues. I do feel that doctors learn by their failures but that didn't do Connie any good.

But I digress, I can tell you that they DID do right by my brother a year ago January. He was right around your husband's MELD when he was transplanted. At the time he was an inpatient due to many issues associated with ESLD.

Now I don't know how fast Mayo can get him evaluated, then there's a week while they decide, so not sure if you have the financial means to go there, wait around the 2-3 weeks for the insurance red tape and medical evaluation process and then standing by while you hope for a liver there.

You cannot be listed in both places because you need to be able to get to the hospital within a short time of getting "the call". Going to Mayo may mean missing a chance at a liver from MGH but from what I have seen and heard in here and from the docs at MGH, your best shot would be Mayo. The fact is that there are more liver donors in Florida, that's just the way it is. My brother was listed at MGH but a transplant doctor told us (privately) to go to Florida.

My best advice? My brother was admitted as in inpatient there so many times, and by the time he was discharged, his MELD would drop as they tweaked him up, i.e. albumin, thoracentesis, paracentesis, lactulose in orifices not meant for oral meds. So one Sunday shortly after he was admitted for his issues, I said to the transplant team doctor, (yes they come in on Sundays), "Hey doc, by the time you folks are done tweaking Richard, his MELD will drop and he will no longer be high on the list, can't you update his MELD before Wednesday (the day they updated scores)?"

To my utter surprise, she said "sure, I can do that right now". Well what do you know, two hours later they came back with an offer of a liver that he is enjoying to this day!

So I wouldn't waste a minute in making arrangements should you decide to go with Mayo. They may have room in the Gabriel House for like 45.00 a nite. It's not for everyone because no TV except in the common areas but it is a very nice place for transplantees and their families.

I can give you more info if you are interested but time is of the essence, seriously.

Hope for the best for your hubby and family, and be ready to do some serious caregiving :)

Hugs,
Mae
Posted 5/19/2014 10:39 PM (GMT 0)
p.s.

I noticed your hubby is und. after treatment....I'm hoping that means the virus will not be as aggressive as it was with many of our other transplant candidates :)
Posted 5/20/2014 4:32 PM (GMT 0)
Mae and all,

Is there something special about Mayo Jax, as opposed to other hospitals that are not in highly populated areas?

I'm in NYC area, and I have many good choices of transplant centers - but all have the same long wait times (and high meld scores needed) as far as I have researched.

Aside from personal experience - which I do value highly, btw - what are the determining factors when deciding to list at a hospital far from home?
Susan
Posted 5/20/2014 5:23 PM (GMT 0)
Simple.

Good program and the average MELD at TP is 22ish!!!

For the very ill it is a no brainer.

The scuttlebutt is that states with no motorcycle helmet laws, and nice weather all year have more donors.

I don't know if that is true...other than the no helmet laws, and nice weather.

Let us hear.

Mike was transplanted in FL at UM Jackson at 24.

Let us hear how this is going.

Mama Lama
Posted 5/20/2014 6:00 PM (GMT 0)
Hi Melissa,
If they didn't tell you at MGH, know that you will have to be under Mayo's care for a year post transplant. Mae's brother went through that. Many MGH docs won't accept a patient that has had a transplant from another hospital. My hepatologist, Dr. Pratt is one of them. His PA suggested I look into Mayo, but explained that I'd have to see another doc at MGH, should I get a transplant somewhere else.
Posted 5/20/2014 8:34 PM (GMT 0)
Quote"p.s.

I noticed your hubby is und. after treatment....I'm hoping that means the virus will not be as aggressive as it was with many of our other transplant candidates :)'

I always thought that once SVR is achieved, hepc won't reoccurring
after transplant.
I mean SVR not just UND by the time of transplant.
Posted 5/20/2014 11:13 PM (GMT 0)
Susan,

in addition to what MamaLama said, another reason for Mayo having more livers (this from an MGH doctor) is that say you get shot in the head in Boston, you have a fair chance at survival in some cases. In many parts of Florida, the doctors are just not as well-trained as the Harvard docs i.e. docs from Beth Israel, MGH, Brigham and Womens, etc. His opinion of course, but Mayo is also top notch, especially in the liver transplant area. They do far more than most hospitals too.

As David said, you are supposed to stay under their care (Mayo) for a year-ish but they do realize some folks can't hang around. My brother left 3 months later but flew back due to a hepatic artery stenosis that gave him a bit of trouble. He went back at six months too, but managed to find a doc at MGH to take him on and he never went back.

The biggest issue would be the financial aspect. It wasn't cheap to stay there as long as we did, on post-transplants visits though, he stayed at Gabriel House (on-campus) and was much cheaper. Also, many folks just can't afford, as caregivers, to take that much time off work.

This all hinges of course whether the insurance will cover down there and whether or not he is approved for listing. My brother had a private HMO so I was shocked that they covered an out-of-network transplant.
Posted 5/21/2014 1:46 AM (GMT 0)
I so greatly appreciate all of the input and advice that I am receiving..... I have to tell you.... I think I am even more overwhelmed and scared. We would so much rather get the call here in Boston than in Florida.... and I am holding onto my job by a thin thread through FMLA (time is almost out). Moving to Florida and having to stay long could screw up him being on my insurance which I just put him on due to a "qualifying event". Every hour his health changes.... like today... we were outside, enjoyinh the sun... I cooked on the grill and he ate great (which he never does). All of a sudden he started grunting and moaning which is a tell tale sign that he's not well yet I can not place the problem. Its not the encephalopathy. He takes lactulose every 2 hours (poor thing). Has to have 10-12 BM's daily. Last hospitalization his kidneys had taken a little bit of a hit and that's another thing that I worry about. I have come to learn a lot about the disease and the way his body and mind responds to it, but sometimes I am lost.... I feel he is on the way to another hospitalization (which he is admitted about 2-3 times a month... I am trying to do everything that I can... I feel helpless
Posted 5/21/2014 3:29 AM (GMT 0)
Melissa,
You need to suck it up and be strong for your husband. You aren't helpless. Your husband is being taken care of by the finest doctors, nurses and technicians in the world. There have been times when I was happy to be hospitalized, because I knew I needed the care they gave me. Not that I wasn't happy to get out later, but by then, my problems were stabilized. This is a roller coaster, just go with the ups and downs. I never knew where I was on the transplant list, which made it easier for me. I put one foot in front of the other and eventually things worked out. My surgeon told me I was within 2 weeks of death when I had my transplant. My old liver had 2 cancerous tumors at that point. I had been in the MGH program with ESLD for 4 years. You'll get there, have faith.
Posted 5/21/2014 4:22 AM (GMT 0)
thank you david.... your right I do have to suck it up... I have been... I just wish that I could take all his pain and give it to me and deal with it myself.... He gets so mad sometimes and I become his sounding board amongst other things. I am the closest to him so he takes everything..... and anything out on me. I take it trust me... I love him with all my heart and I am doing everything that I can to get him through this.... I just want him to be happy and well again... I feel selfish sometimes that I get so depressed. I can't even imagine what he is feeling inside. I want to make him better.... and obviously I don't have that power
Posted 5/21/2014 12:10 PM (GMT 0)
From experience, I know how tough it is to be the caregiver. It's easy to be the patient.
Posted 5/29/2014 3:21 PM (GMT 0)
So we are still working on Mayo. We have an appointment booked for Aug 11th, but it is too far away considering his status. His daughter and I are working on getting him there sooner. All the paperwork has been filed via internet and latest MRI, X-ray and labwork sent as well straight from MGH. He just got out of the hospital last night once again for his encephalopathy. He was completely non-verbal and even when he could be a little more aware was unable to explain the things that he needed and wanted. He couldn't even tell when he needed to go to the bathroom. It was terrible. The doctors keeping talking about this natural shunt that he has developed that they want to close but are worried about his electrolyte post-procedure. I am scared crap. At first, we were totally against the procedure, but now with his suffering so much and being on 30ml of lactulose every 2 hours and sometimes having to double up the dose... I can't watch him suffer. So if the appointment does not happen soon then we are moving forward with the closing of the shunt. I am sooooo scared though that it will hold him back from the transplant. I know that after the Tace procedure he did very bad before he got better and that may happen here too. I appreciate how supportive you all are and am grateful that I found you. turn
Posted 5/29/2014 5:32 PM (GMT 0)
Melissa, I hate HE!! Hate it. So difficult to control. I bet you are scared. What MELD is he at? Just a thought. What meds is your husband taking now. If any benzo's, Ambien, anti-depressants, pain meds....these can all increase HE. Let us know how today is going. Good that you have an appointment with Mayo. Sorry it seems so far down the road. Big Hugs.
Posted 5/30/2014 3:51 AM (GMT 0)
K so His meld score is a 25. June 16th he will bump up to a 27 and then Marti (transplant coordinator) will appeal for another point and make him a 28 by June 1th. His natural MELD is a 22. He's on many meds but I will not allow him to be on certain ones because they could increase the confusion. No sleep meds, no pains meds..... nothing that could compromise his well-being... trust me I am all over that, Good news!! Just got a call today that the transplant surgeon wants to meet with us on Thursday in Florida. First appointment. So we are flying out on Tuesday and will meet with him 6:45am on thurs. I am excited but scared. Also got an e-mail that his latest MRI showed a lesion 1.9cm large around the treated tumor from before. ***!!!! Interventional Radiology (dr. Ganguli) believe that it is from the original tumor and it shouldn't affect his transplant status. Still scared as hell
Posted 5/30/2014 5:06 AM (GMT 0)
Hi Melissa.
That's great news regarding the upcoming Thursday appointment! Fingers crossed that everything will go well. The WORST day in our lives was the day my mother was diagnosed with HCC. Thinking of that day still makes me anxious and scared. My mom did have chemo embolization 2 times. The treatments were 2 months apart. The chemo embolization was a bridge to transplant. My mom was blessed with a donor liver, 13 months ago. We are extremely thankful to my mother's donor and donor's family. The road has been a bumpy one with many obstacles. Continue to be strong for your hubby... Continue to advocate for him and continue being the fantastic, loving and caring wife that you are. Yes, I agree , it's a very scary journey. Good luck on Thursday and please continue to keep us posted. Hugs!

Post Edited (Worried daughter2) : 5/29/2014 11:11:52 PM (GMT-6)

Posted 5/30/2014 8:28 AM (GMT 0)
yes! constantly scared... OMG!!!! and so is he and I can tell because he takes everything out on me. He just woke me up and yelled at me to change his bandage that covers the plurex catheter. Exhausted I must tell you. That's another thing that bothers me. I try to keep up with everything (housework, cooking, working, meds, nursing care) its a lot and I struggle with it sometimes but I feel like he doesn't even let me breathe. excited about Florida. It has to go well. If he was able to be listed here then I see no problem with him be listed down there
Posted 5/30/2014 11:10 AM (GMT 0)
Your hubby isn't listed at your local transplant center? He can be dual listed both where you live as well as in FL. However, since FL probably isn't where your live, you will need to temporarily relocate there... Especially once he is listed. I hope you have some help because being a caregiver is very exhausting. You need to make sure you take care of yourself.
Posted 5/30/2014 11:18 AM (GMT 0)
Melissa, Mayo news is terrific! You are doing great and will get through this. I know this move in mid stream is not an easy one, but I am keeping fingers crossed for you and your guy. Big Hugs
Posted 6/11/2014 4:13 AM (GMT 0)
so here's the deal.... we are in Florida at Mayo. He is listed up in Boston!! We are going through the evaluation process all over again down here and they are moving things quickly for him, but to me it doesnt seem quick enough. He has three caregivers, but the thing is he does so much better when I am with him versus someone else, plus I know more than anyone when it comes to appointment. I have to leave on Thursday the 12th to go back to work to keep him on insurance and to make the "bread". I would so much rather stay with him but dont know what else to do in regards to work and to insurance from out of state. Can anyone help me here. I dont know what to do. Otherwise I have to go back north... leave him in the south and work to make money and keep insurance and I dont know when I will see him again in fear of losing my job. If I lose my job he is not insured and I will lose him. I would take any job.... like work from home on comp as long as I have money coming in and insurance. I know this is repetitive but so scared and its so important... HELP ME!!!!! I would do anything to save hid life but I dont want to be without him plus its better for me to be there other than anyone else..... email is down... please post
Posted 6/11/2014 4:18 AM (GMT 0)
bytthe way... I have been on FMLA, but my time has just about lapsed
Posted 6/11/2014 1:16 PM (GMT 0)
Hi Melissa.
So happy to read that your hubby is at Mayo getting his evaluation. I know it's difficult having to be away from your hubby during the evaluation process however, he will need you the most, once he is post transplant. In my opinion, the best time to to take time off from work would be once he receives " the call". Prior to that try your best to have his other caregivers be there. You can always visit with him on weekends (assuming that he will temporarily relocate to Florida from Boston). We did that with my mom... She was dual listed and my dad and her temporarily relocated closer to her transplant center. We would visit on weekends or when the kids had time off from school, etc,. Although I was states away, I was kept in the loop about everything (conference called in during any appts, etc). Since I am my mom's caregiver, I was able to also temporarily relocate beginning the day we got "the call" up until my mom was okay to come back to our home state. That was the time she needed me the most as well as me wanting to be there for her. Remember, if he decides to stay in FL, it doesn't mean he will come home right after transplant...they usually like to keep a close eye on patients for an extended period of time (could be weeks...each patient is different). So, try to adjust your leave of absence from your job accordingly, especially since you want to keep your job and maintain your insurance. I hope I explained myself accurately... Typing on my cell is difficult and can't get my thoughts out as if I was sitting at my computer :-)
Do you know when his evaluations will be done? Have you decided if he is listed that he will relocate there until a donor becomes available?

Post Edited (Worried daughter2) : 6/11/2014 7:26:57 AM (GMT-6)

Posted 6/11/2014 2:48 PM (GMT 0)
Melissa..

Take a deep breath. You probably have not had one for awhile. Sometimes it is really difficult to step back in a crisis and look at the big picture. Your husband has a MELD score high enough to be transplanted at MAYO FL, if he is accepted on the list. The end goal here is to get him a transplant sooner than you could at Mass Gen, keep insurance to allow him to get a transplant.

You have gone through some big steps already....the biggest being getting to FL and into their eval process, and keeping your husband as stable as possible through the transfer. And keeping your insurance.

Since you need to keep insurance to qualify. Changing jobs midstream is not a good idea right now.

Even though it is scary to be away from him, and I would hate to be in your shoes....the good news is he has 3 caregiver's. (and he is lucky to have 3!) They can get him to a hospital and give him meds, take care of what is needed during the waiting, which should not be too long once he gets through eval and insurance. Remember the goal. Keep him on the list, get the transplant.

So my suggestion is not to attempt a job change right now in a crisis. Keep your insurance. Let the 2 caregivers help with caregiving on this side of transplant and save your FMLA for after transplant. Big Hugs, and please keep us posted as you are able.
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