New to Fourm Husband listed for Liver Transplant we are just waiting....

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DDore
New Member


Date Joined Sep 2009
Total Posts : 9
   Posted 9/28/2009 9:22 AM (GMT -7)   
Hello,
I was reserching a drug and came upon this wonderful forum.
He is listed for Transplant at IU in Indianapolis, about 42 days now.
Hep C, Cirrhosis and liver cancer (HCC) He is taking everything you have all
described, Ammonia level at 86 last Wednesday. Now I am embarresed I took him to ER
after reading a post from someone who's MIL was at 135.
We are not married its easier to say husband.
we are 52 and 56, met April 2008 on E Harmony this past April the cancer was discovered.
He stopped working at the end of August and took to the couch, 24/7
His personality has done a 180 not the man I know. I do hold my tongue so WW3 doesnt start.
His family and his kids are wonderful sadly all about 5 hours away.
His eating habits have gotten 'weird' he often requests what I am not preparing and I end up
running to the store or 'Bob Evans" for Ham and Bean soup.
Yesterday it was Watermellon.
I have the phone full time, tomorrow is an MRI to see if the radiation treatment on the larger tumor
shurnk it under a 3 he will double his MELD score if that is the case.
I have been dealing with Social Security who have been kind really. Short term kicks in November and the
Compassionate Allowance Disabality will start in March after a 5 month waiting period.
Prayfully he will be back to work by then.
I am currently unemployed which is a blessing till the housing market turns around a bit.
Thanks All, its nice to have gals to talk to.   Debbie

jenny64
New Member


Date Joined Apr 2009
Total Posts : 8
   Posted 9/28/2009 10:02 AM (GMT -7)   
Good luck on your journey. My husband has been on the list at Barnes Jewish Hospital in St. Louis for 6 months. I don't think he will get a call anytime soon--but he has had lots of complications and problems--none that raise his MELD score. He is in the hospital now after having emergency surgery Friday night for a hernia that was "incarcerated" and causing his bowel to die--he is doing pretty well today. I was struck by your post because you talked about your husband's "personality change". I find the same thing. My once sweet and kind and loving husband is not that anymore--I won't go into any details, or talk bad about it, as I am sure it is all from "being so sick"--but boy, it is hard on my end too. Good luck!! I have gotten Social Security approved and fought insurance companies and on and on and on--so if I can give advice I am happy to.
Jenny 64

DDore
New Member


Date Joined Sep 2009
Total Posts : 9
   Posted 9/28/2009 10:45 AM (GMT -7)   
Jenny,
Thanks so much! He sometimes is so mean I wonder if I will recover when this is over. He may have damaged this relationship beyond repair, sadly he will have no idea but thats todays feelings.
John was in a Liver study at SLU there when the cancer was found. He used to live in Hanniabel. He fought with the insurance company when he was stong thank goodness and its all worked out. He moved to Indiana 3 years ago.
I was just informed his Son and 2 nephews are arriving tonight at 8pm 'surprise' his son said 'I told Dad' Dad did nt have presence of mind to tell me. I am rearranging beds and heading to Wal Mart to get a couple of blankets.
Talk to you soon,
Deb

jenny64
New Member


Date Joined Apr 2009
Total Posts : 8
   Posted 9/28/2009 10:48 AM (GMT -7)   
I too worry about this "broke beyond repair"--it's tough!! Good luck with your houseguests!!
Jenny

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/28/2009 1:25 PM (GMT -7)   

Jenny, it's good to see you posting!  It's been awhile.

Deb, welcome to the forum!  Maybe you will be able to get out a little by yourself while your houseguests are there.  Don't feel you have to entertain them or be waiting on them hand and foot.  They are family.  Let them find out what it's like to have to deal with your hubby 24/7.  If there's a possibility you might not hang in for the long haul, they need to know what it's like.  They need to know anyway, to participate in his care when they can.

Don't be embarrassed about taking him to the ER.  If he is exhibiting signs of encephalopathy, go with your gut.  Is he on Lactulose for that?  Did they increase it after the ER visit?

I want you to know that I had liver cancer a little over 2 yrs. ago.  It was one huge tumor which took up most of my right lobe and had metastasized to the inferior vena cava, making me ineligible for either a transplant or surgery.  Shands had found it on a routine ultrasound (which I was having once a year due to my hep C) and there was nothing they could do.  So I made an appt. at Mayo--and am still here today, cancer free.  After tons of tests, they did chemoembolization, which shrunk the tumor some.  A few months later, they tried a study drug, TheraSphere, which is delivered through a catheter in the groin right into the tumor.  It is a form of microscopic radioactive beads...somewhat like the seeding they do for prostate cancer.  It took several months to get the full effect, but by May 2007, the piece of tumor that had metastasized shrunk back into the original tumor and the original tumor had died, along with the rt. lobe.  So they surgically removed the entire rt. lobe and gall bladder.  I never needed any other treatment, though I got scans and blood work every 3 mos. until recently.  I tell you this story so you will know there is hope.

How many tumors does your husband have?  It sounds as though the cancer is confined to the liver, so that is good.  Have they explained the various treatments available?

During all this time of awful stress, my long-term relationship did suffer.  Though we were not living together at that point, we did drift apart.  We are still friends, but it will never be the same. 

Liver disease causes unbelievable fatigue.  No matter how much sleep one gets, it is never enough and never makes much difference.  However, to NOT get enough sleep makes a huge difference.  I normally sleep at least 12 hours a day.  If I get up earlier, I have to take a nap by late afternoon or early evening.  My palate changed, also, particularly when I had cancer.  I mostly wanted soups, fruit, and fruit ices.  To this day, I don't like anything heavy and I eat a lot of fresh fruit.

It's great that you have SS in place.  What is Compassionate Allowance Disability?  I was approved for SSD in '05, but for a different illness.  Now I am full retirement age, so they switched it over to SSR.

I have to question your statement that he should be back to work in March '10.  I think that's overly optimistic.   If he doesn't get a transplant and/or the cancer treatment isn't successful, he won't be able to work.  And if he does get a transplant, it's unlikely that he would be able to return to work that soon...if ever.   Read some of the posts from those whose loved ones have had transplants, and you will see what a very long road recovery is.   I know you didn't sign up for this when you met your guy, so it will be up to you to decide if you are able to handle it.  You will get lots of support and information here, though--that I can assure you.  Dore, same goes for you.

Big 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) : 9/28/2009 6:20:16 PM (GMT-6)


DDore
New Member


Date Joined Sep 2009
Total Posts : 9
   Posted 9/28/2009 3:19 PM (GMT -7)   
Wow, you are a miracle! 2 tumors one at 2 and one at 5, they shrunk the 5 with Radio Radiation (sp) it worked it has not spread and is slow growing. He has worked all his life as a tech for radio waves, gadgets ect.. for big companies. He thought he would be transplanted by now, heck by July. his Dr. signed the Family Medical Leave Act for 6 mos. That is what we are assuming. John uses his mind and his hands he can sit pretty much all day if need be, he is good at that. Since I met him he has had the Hep C and Cirrosis, Hep from a dental intrument and the other from taking Serezone 10 years ago that proved deadly for some patients causing liver failure and death, John was in a class action law suit again Bristol Meyers who was found guilty. He got a small settlement before I ever knew him. So fast forward he worked every day I have known him and would come home and sit on the couch never moving till bedtime. I am the opposite, very ADD and hyper. My attraction to him was what I wanted in a realationship, "must love Kids, Cats and Chaos" he fit the bill. My boys were Junior in High School and Junior in College, 5 cats and I worked full time for a builder and was the HS PTO President, group leader of my small group and Advisor to the Johnson Co Sheriff's Explorers Post 841 so my plate was FULL. I did'nt need someone with money I was self sufficient just started thinking ahead to the golden years when the boys would be gone and decided to test the water and see if I could indeed find someone. Walla he was it.
He hit the couch 8/31/09 crashed and burned turned into an invalid and has throw himself a pity party ever since. I would compare him to a bitter altzheimer patient. His family is 5 hours away they are grateful for the care he is getting I am weary from the rudeness. IU claims to do more transplants than anyone else wait time is way less then other hospitals, 44 days is short I know but we researched SLU and IU and IU won hands down. Eariler today he forgot to tell me I would have a housefull tonight, I wish his Kids would tell me and not him they are coming in to spend a few nights. I ran to WalMart for blankets we are now up to 3 adults and 3 kids arriving around 11pm tonight. John has an MRI tomorrow at 7am... it will be a short night. The short term SSI will come in Nov. There is a new program out called Compassionate Allowance Disabality, it lists 50 medical conditions that they will fast track Medical conditions and pay you much eariler than traditional Disabality the catch is you must WAIT 5 months to collect the larger monthly check but it is retroactive to your disabality date, Johns being August 28th his last day of work. google Compassionate Allowance and you will find it. Liver is one of the conditions listed, for once a government agency worked fast he was fully approved in 17 days. He applied for SSI to cover the 5 month wait and that is now approved. The CAL application is on SS website, prepare it will take you a good hour to fill it out. Have every doctor and address and drug ready to fill in over and over. I have bent your ear long enough thanks so much sometimes I just to go cry. Today it was Kohls parking lots turn. Debbie

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/28/2009 5:41 PM (GMT -7)   

Thanks for the background, Debbie.  It was, most likely, radiofrequency ablation that he received.  Were the tumors 2 and 5 cm?  Mine was 11.5 x 8.5 cm.  So you can see how unlikely it was that anything would work for me.

I was a medical transcriptionist for 15 yrs. prior to getting SSD.  That involves a lot of sitting, which I could no longer do after hip replacements.  However, I can tell you that a sedentary job that requires a lot of focus and mental work can be just as tiring as an active job, if not more so.

Actually, Mayo claims to have the least amount of wait time for a liver in the U.S.  I believe it's about two weeks, or was.  The reason for this is that they will sometimes accept livers that are less than optimal.

I hope your guy does get transplanted soon, but even so I think it is really optimistic to think he will be able to return to work by March.   I have yet to read about one person who has gone through transplant w/o setbacks and other problems, including my brother-in-law.

Have they made any mention of surgery regarding the tumors?  I know they don't like to remove them if they are more than 2 cm.  However, they could remove part or all of the lobe they are in and he can live with just one lobe, as I am doing.  Of course, transplant would make cancer surgery unnecessary, but it really depends on how long he has to wait for a liver and how fast the tumors are growing.  You said they are slow growing, which is good.  Mine we're not sure.  The previous year, the tumor did not show up.  Personally, I think the radiologist missed it, as it grew very little from the time I was diagnosed until I had the first treatment--which was about 9 mos.  So to grow from nothing to the size where it was taking up the entire rt. lobe and spreading into the vena cava in a year's time seems a little far-fetched for a slow-growing tumor.

Just because he feels poorly is no reason to take it out on you.  You need to let him know that.  However, if his ammonia level is a problem, then he doesn't even know how he is behaving...so you just have to let it slide and try to get away for a few minutes so you don't blow up.

I was just asking about the Compassionate Allowance thing for my information.  I am already on SS and Medicare, with some help from Medicaid.

I hope the houseguests will be a help and not another thing for you to take care of.

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) : 9/28/2009 6:45:29 PM (GMT-6)


DDore
New Member


Date Joined Sep 2009
Total Posts : 9
   Posted 10/4/2009 6:28 PM (GMT -7)   
Connie

We got the call at 8pm last night Saturday and John went into TP sugery at 5am today Sunday.
He is doing just super and says he feels better then he has in 15 years.
I have his grandson at my house and I am desperetly trying to get him to bed....
Deb
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