HealingWell
Search Close Search
☰

End Stage Liver Disease

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/18/2012 9:14 PM (GMT 0)
Hello , I am new to forums & need someone to talk to, People that will understand whether they have the disease or know someone who does. My husband is in the end stage of liver disease & also has HCC , Along with multiple other conditions. I husband has had Hep C for many years & we have known this but just recently found out he has HCC . Things have been fine with my hubby for years and we have lived a great life & have raised 5 children our youngest being 5. My hubby's problems all started really in Jan of this year , He had a P.E & from that point he has only went downhill , Now hes not eating & he's in pain 24/7. Hes angry & sad. He's lost over 60lbs & is just sick. I dont know what to do , I feel lost , I'm losing my best friend, soul mate, my lover & the father of our children all to soon. We have been told by the doctors that he had 2 months to live because of the cancer but it seems the liver disease is taking him before anything else . He tells me , hes scared & he's mad at God & he often says why me , what did i do to deserve this. I am just going crazy , He is not loving anymore , always mean to me & the children. I wonder if anyone else is going through the same thing? Is there another woman whose going through this with the man they love so much? I feel like im alone in this world & im doing my best to make sure he knows i LOVE him so very much & dont think i can live without him :(
Posted 3/18/2012 9:29 PM (GMT 0)
Hello ILHS,

Your story is so sad, but not unusual in these pages.

Many here have walked in your shoes. Some of us are patients who post for themselves, others, like you are caregivers, family and friends of those affected by liver disease.

My partner, like yours, had a happy full life, we raised a family, all the while knowing he had Hep C and ought to quit drinking alcohol...but eat drink and be merry...he was just dying, was his motto, until he got very very ill. He went from 240 to 150 in a few years...bit by bit. He had bleeds, epipsodes with high ammonia and confusion, his legs were so swollen, and he peed brown! He needed transfusions for the low platelets.

We got him to a hepatologiest in Miami who gave him 90 days to live in the fall of 2010."You won't see Christmas, Mike," he said. But added..."if you don't quit drinking." And so he did. He was still very sick, had 4 hospitalizations in 4 months...but when they were sure he was going to stay sober, they talked to him about transplantation. At first he thought it was dumb, he had been a bad boy and deserved to die.

But over time, with better meds and lots of AA meetings, he decided to live.

The trick was to stay sober, live long enough to be evaluated and wait for a donor liver that matched in our area.

Then they found, like your hubby, the HCC. Gosh...cancer. That was not good.

But they found a donor, he had his surgery and it will be 11 months post transplant at the beginning of April.

Is there any chance your young husband could qualify? Or are his other medical problems too serious?

I know what you are talking about with the angry attitude. I felt like I'd already lost my partner already. He never had a nice word for me. And how much I could have used a hug once in a while. I think I cried every single day for a long long time.

I tried counseling and that helped a lot. To understand that he didn't mean the things he said, it was the disease and the meds...especially if he's taking pain meds...some of them have a real mean side! And I got very involved in this site. I posted almost every day. folks were wonderful about sharing their stories...some with happy endings, some, not so happy.

We had a member tell us of her hubby's battle lost just today. So sad.

One of our moderators lost the love of her life some time ago and she pines for him still.

Come see us often, we are here for you.

Hugs,
Carol
Posted 3/18/2012 10:05 PM (GMT 0)
Wow thank you so much! I am so happy for you & your partner! I pray for a miracle like that for my lover-boy. Yes they told us he is NOT a candidate for a transplant because he has had Hep C for over 15 years . I know what you mean about just needing a hug sometimes . Thank god for our children , They hug me often. I know that the "mean words" aren't him & are the pain medications but my god. It hurts! The doctors said "we can give you pain meds to help with your quality of life & we will be having hospice in the home soon. His quality of life has diminished but he is not ready to leave us just yet. Really there is nothing the doctors are or will do & that makes it all so much worse . Why cant they save his life , Why couldn't they give him a transplant years ago? Why did they wait for 4 years to tell us he had HCC? All those questions were answered by the doc's like this " There's nothing we can do for you Gary" Its progressed to far. WHAT?! I dont understand that.. My husband & I are not into medications & have always healed what ales us & our children with Herbals but now my husband is on blood thinners , pain medications & Blood pressure medications to stop the bleeding in his esophagus . The doctor say's hospice will help with the "end stage" & also provide counseling to me & the children & help him to understand how he will feel & what will happen in the "end". I have prayed & prayed & begged God to please step in & hold our hands & lift us up in this time of need. I just dont know how to feel , I'm heartbroken & find my children consoling me more then i am them. Poor lil thangs .

I thank you so much for your support
Posted 3/18/2012 10:05 PM (GMT 0)
I know exactly how you are feeling right now. The man that I love was officially diagnosed with cirrhosis a few months ago and HCC this past Valentine's Day. I understand how lost you feel, and the hurt, the anger, the helplessness, the sadness - all of it. And I understand his feelings as well - the 'why me', the anger at God, etc. When he appears unloving, angry, or says mean or hurtful things - please remind yourself that it is the disease and/or the meds talking. You have found a wonderful place here at HealingWell - these are some of the most understanding, supportive, helpful, and loving people I have ever 'met'. Please continue to post - rant, rave, vent, joke, or talk about the weather - it doesn't matter - someone that cares and understands is here to listen! :-)

Have a peaceful day.
Splash
Posted 3/18/2012 10:12 PM (GMT 0)
Splash , Thank you very much i sure will . Honestly i feel a bit better already , Mamalama replied so fast :) & i thank her .I am also here for ALL of you. I appreciate all conversations :)
Posted 3/18/2012 10:18 PM (GMT 0)
ILHSM,

15 years for Hep C?

Mike was infected in 1969 or 70 and had his tx in 2011...42 years later!??

So that excuse is crazy.

The HCC does have some limitations. They don't usually do tx if the tumor is over 5cm. Not because the docs are mean, but because the patient is less likely to have a successful outcome...the disease has, infact, gone too far.

Where are you? Is there a major medical center near you.

I just isn't tru that there isn't anything to do for liver cancer. Mayo Clinic in Jacksonville Florida is having good luck with ablations and chemo embolizations...where they wash the tumor(s) with chemo therapy and shrink the tumors.

Our moderator, Connie, had a lobe removed with her first HCC and then when it came back, they used the chemo embolization to keep it small enough until her transplant!

I wonder if you are getting the latest and greatest information.

Well, maybe they have talked about all that and there are other problems you havn't talked about. I'm no doctor...but I'd love to see you get a second opinon.

Once the time comes for hospice everyone here says they are GREAT help. don't wait too long. When it is time, let them help you.

Hugs,
Carol

Post Edited (MamaLama) : 3/20/2012 8:55:36 PM (GMT-6)

Posted 3/19/2012 12:01 AM (GMT 0)
Hello Iluvhimso,

My husband has cirrhosis due to alcohol. He quit drinking the same date that Carol/MamaLama's partner did. His health has improved and he is currently stable.

I am so sorry that your husband is suffering from liver disease. I agree with Carol that perhaps he needs to be seen at another medical center or doctor...is he seeing a hepatologist?

You mentioned blood thinners? Is that correct? Most liver patients have issues with blood clotting not being normal, so being on blood thinners doesn't sound right.

As you have already found, this forum is a caring group of people sharing information and it is so good to find a place where you can feel not alone.

Please take care and post back often.

Emma
Posted 3/19/2012 12:59 AM (GMT 0)
MamaLama ,

No of course they can do radiation..But he says why go thru all that radiation for a couple more months? My hubby's tumor is only 2cm & a month later its at 25% of his liver , Excuse my french but what the hell? Sounds like BS to me . But im no doctor ..I am in NC , Very close to UNC chapel hill & if you know NC , That's supposed to be one of the top Cancer centers , Yes we have been to a few doctors because like i said , Sounds like BS to me . But because my husband has state insurance they will only do MRI & CT Scan a few times a year so hes past that now :/ What i dont get is NO one has ever told us my hubby's liver diseases is in "end stage" until last week at urgent care , That doctor says I've had a-lot of experience with liver cancers & liver disease & i can tell you , You need Hospice NOW. After i almost , Again excuse me but i LOVE my hubby & i am Italian so i almost beat her a** for being so frank i guess & for not knowing my husbands case at all , Then i calmed down & listened after she said please i would not tell a lie . She then stated that she is certain that's whats going on because of the edema & high potassium. Now his Cancer doc will give him TheraSphere but only if his bilirubin is below 2.5 but he say's well this will only give you a couple more months , So the hubby says , why would i poison my body any more then it already is if you can only give me a couple more months. I felt the same and stood by my man until he had yet another PE & the filter "trapease" was placed in the wrong spot , The ER doctors when he first had a PE in Jan rushed him into surgery & implanted a filter ...I said he has liver cancer & liver cancer produces blood clots , Oh we know that's why we will place it above his liver to catch them as well .. My hubby has NEVER had a blood clot in his life , ANYWHERE . So low & behold they placed it below his liver so now he's got clots in his legs from a foreign object being injected into his body & also clots "massive" ones from the liver. The poor sweet man cant get a break. I hope all this is making sense to you guys ...The blood thinners are for the clots honey , Sorry i am so lost ...My head is just not right ...


Thank you & hugs to you all
Posted 3/19/2012 1:16 AM (GMT 0)
So sorry you are dealing with this . I myself was given a death sentence a few years back , They gave me " Three months max " . I don't wish to give you false hope but doctors aren't always correct in estimating a patients life span . Alot of things come into factor besides the medical aspect of fighting this or any disease , Underestimating the desire to live and the body's ability to cope with stress and disease has made a many doctor eat there hats .
Yes things look bleak and the fact is they can and likely will get worse before he either gets better or passes away . I am a male in my mid 40's with Severe Cirrhosis of the liver ( Alcoholic ) , They estimate my liver function is at roughly 15% . I suffered just about every nasty part of this disease and managed to make it through the transplant evaluation process but had to get surgery done to control the Ascites problem in the process , Been told a few times I could die and shouldn't be alive . I always kept a mental image of that cartoon drawing of the frog half way down the birds mouth with the frogs hand grabbing the birds throat " Never give up " .
Knowing what your fighting against is your best defense , Years ago I found this forum and learned to be ready for anything this disease can throw at me . Not only can you chat with others who are in the same boat as you but the resources this page provides will help you guys in which ever way this disease turns . Welcome and hope you will be sticking around to meet the rest of the crew here , It's kinda slow during the weekend so keep checking back in often .



A. Ziffle
Posted 3/19/2012 3:59 AM (GMT 0)
ILHS, oh boy - don't get me started on state health plans, medicaid, and drs. that give 'expiration dates'! Last week when my fiance was in the hospital (& calling that place a hospital is a stretch), his PCP (never listen to one of them when it comes to any kind of specialty, i.e. liver, kidney, heart, etc.) told us that he had a couple of days to maybe a week or 2 left if he didn't get a transplant! I won't go into the details on why that statement was wrong on SO many levels, but suffice it to say that he was negligent in saying it and he has NO WAY of knowing how much time he has left! The nurse from TGH (who hasn't even seen him yet) was furious that this PCP told him that. Those words from that quack devastated my fiance, dumped him into an immediate, deep depression, and scared the crapola out of him. Yes, he is feeling quite ill, but his tumor is only 3.5cm (& hasn't increased in size since 2/14, there is only 1 (no metastasis), and none of the relevant blood values are dangerously 'off'. Now, as for the medicaid that he is on - it is because of this that he is STILL waiting for his initial consult with Lifelink at TGH. There is NO doubt in my mind that if he had BCBS or some other 'real' insurance, he would already be at least halfway through the actual evaluation process and close to being listed.

I have a few suggestions. Do a TON of research on your own. Make sure you are getting your info from reputable sources - i.e. Johns Hopkins, Mayo Clinic, NIH (National Institute of Health), medical journals, etc. Write down or copy as much info as you can. Write down any and all questions as you go along. Get copies of all tests as he gets them (always keep a copy for yourself). Don't hesitate in questioning anything a doctor tells you. Don't be afraid to speak up! I am very new at this - it's only been a very short time since his diagnosis - but I had a very sick son and I have/had a lot of medical issues myself, and these are things I have learned along the way. And I'm also going to give you a piece of advice that I don't follow too well myself - please don't forget to take care of yourself!! If you get yourself sick or burn yourself out, you won't be any good to yourself or your hubby. Sorry, I didn't mean for this to be so long - I can get a bit carried away and start to ramble sometimes with these kinds of issues! But I hope that something in the short novel I just wrote helps you in some way! :-)

p.s. One more thing - contact the American Cancer Society a.s.a.p.! They are a great source of information and resources. They have a form you can fill out - they may be able to help you with several things. 1-800-227-2345 and website is cancer.org - please contact them!

Post Edited (Splashdancer) : 3/18/2012 10:13:01 PM (GMT-6)

Posted 3/20/2012 2:44 PM (GMT 0)
Splashdancer



Thank you for all that information . I'm sorry i have not been on , I am just so deeply hurt & sad . Hospice will be here at our home today & my hubby can no longer keep food down . He has lost more weight since a few days ago & is in a tremendous amount of pain. I'm so angry at God & doctors / nurse's . This could have all been prevented had they moved quicker to help the love of my life. I know that i will never know love like this again. Now they say its to late to do anything. I wish i had a cure , A miracle. We just celebrated , well not really celebrated because he is so sick , but had our 15 year marriage anniversary Feb 28th. He is only 48 & to young to die .. I will continue to pray & beg God for a miracle


Thank you for all your support
Posted 3/20/2012 5:43 PM (GMT 0)
Hello Iluvhimso,  I am so sorry that yet another member is going through this.   I have been there done that......so I totally understand your anger and fear.    When I had to involve hospice in my husband's care...it devastated me.  But it was the best thing I could do for him and me both.  They were wonderful during a very emotional time.  I don't know how I would have made it through it without them. 

Just know that have a lot of cyber friends thinking and praying for your husband and you.

Take care.........thoughts and prayers.....  

Posted 3/21/2012 2:22 AM (GMT 0)
Dearest Iluvhimso, 

 I am so so sorry you are going through this at such a young age...or anytime really.  My 65 year old husband has ESLD from Hep C.  He had Hep C for over 30 years before it finally moved to end stage ...  it happened pretty quick, he lost 40 lbs, was in pain, swelled belly, etc.  I do know that horrible sinking feeling that I will lose my loved one...and feeling so hurt and devastated by what he says to me (even though he was on strong strong painkillers).  My heart hurts for you and I send you strength.

 
  My hubby was given about 3 months to live (over a year ago) and he is still alive, but now is in a nursing home (we call it the B & B).  I took care of him at home for 10 months, and now I visit at least once a day.  He is on strong painkillers and anti-depressants, but choose not to get evaluated for a transplant (which broke my heart, but is his decision.)  We take small steps of walking through the grief of knowing he is leaving me and that eventually the ESLD will get him, BUT until then we try to have a laugh a day and enjoy the good days.  (I KNOW THIS IS NOT EASY>>>AND AT FIRST NOT EVEN POSSIBLE).  It took us months to get past the being angry and hurt stage ... and sometimes we go back there (me more than him now.)


   This forum has been a lifeline for me...and many times I have ranted and raved and found words of comfort and practical information here.  Please some here often.  We really understand...and as much as your friends and family may want to help, there is no way for them to understand that feeling of losing your love, your comfort, your strength in a storm, your soulmate to this disease.

  Is he on antidepressants?        They really helped my hubby.  He asked his Dr to keep him from pain and to keep him happy....and his Dr is trying to do that.  One of the best things someone told me was "He will have good days and bad days,,,,make the most of the good days and don't turn them into bad days."  We don't know how many he has left...And neither do the Dr's.  They can only guess...and like A. Ziffle said...a lot goes into how long someone has.  Write us day or night...many times I posted in the middle of the night...angry and hurt...and many on here have comforted me.  We will help you through this.  I am the resident candle lighter, so will light a candle for you and your hubby tonight. 
Angie1953
    It is better to light one little candle, than to curse the darkness.

Posted 3/21/2012 2:33 AM (GMT 0)
Iluvhimso,

  I know the feeling of "why is he is mean to me, I am the one helping him and taking care of him."  My hubby was the most caring, kindest, gentlest person I have ever known and he became mean, cranky and self centered as he dealt with the question of "what did I do to deserve this,,I have been a good person."  As he came to terms with things, he changed back to some of his personality traits, but he cannot give me back emotional support for what I am going through.  It hurts to realize he just doesn't have the ability anymore...I tell myself, "It's because he is ill and the disease and pain meds affects his brain."  I struggle to remember the old hubby I knew and loved and find comfort in that.

  I am thinking of you tonight and hope you can find a "tiny bit a happiness with him" each day that you still have with him.  All any of us really have is the current moment in time.

Angie1953

Posted 3/21/2012 2:53 AM (GMT 0)
Angie1953

I'm so very sorry to hear about your hubby ..I thank you for lighting a candle & being here as well as all of you! Today after hospice had left i was reading on of there Grievance pamphlets & came to the page where they list complications or symptoms & from what the book said was he may have a few more day's here with us. So i sat there looking at my hubby sleeping in the couch across from me & cried & cried . He wont up & looked over to see me & said come here , Sit with me , You cant cry alone all the time . He said i love you & i dont want to die , I'm not ready but i dont want to be in pain anymore. I said while crying uncontrollably i can not live without you , You have never had a honeymoon & you owe me , It wasn't supposed to be like this. Why do the "good" ones have to die. I just dont understand , We held each other & made small talk about death ..I told him for some reason a witch doctor or spiritual healer came to mind , Very strong to i might add. I am checking into it tonight! Some people might think im crazy , So be it! I'm going to do my best to keep my hubby alive even if that means going the distance with a natural healer, spiritual healer , witch doctor , medicine man or hell anything else i can find ..I have faith that maybe just maybe God or someone will heal him. I can not see a day without him. Our children are ages 22 , 20 , 17, 13 & 5 & those poor children are devastated as well as me & my hubby. This is not fair!!! I'm praying tonight for you Angie1953 & all other out there going thru the same as i know i am not alone ..Big hugs to you all

Goodnight
Posted 3/21/2012 2:55 AM (GMT 0)
A. Ziffle & anyone else i may have forgotten , I am so very sorry i didn't mean to over look you or the importance to what you have said :( please forgive me and know that i am sending you hugs and prayers
Posted 3/21/2012 3:28 AM (GMT 0)
I know anything that can be said will not make you feel better at this moment . I normally refrain from posting when things look like this simply because that feeling of hopelessness still haunts me . It wasn't that long ago that the flood of emotions hit me and seeing my wife watching me helplessly while I suffered along , She tried not to let on about her fears but it was there .

I did try to seek out God for the answers , I was angry with him and the world in general . I spent several Sundays sitting in church and trying to look for some divine answers or at least a miracle as you say . A few times I even broke down into a sob but tried to keep my composure , Months past by and I still had no answers but I was somehow managing to survive . I'm not gonna say it was divine intervention that kept me going , I was still alive and in pain but with no more answers than I originally had when I first walked through the church doors .
After doing a bit of soul searching I came to the conclusion that perhaps we are all created with a of purpose and when that purpose has been fulfilled it will be our time to pass on , " Pass on " is good words to describe my thoughts on this . I began to ask myself what was my purpose in life ? Surely it wasn't just to be a drunk and die a slow death ? Then what good could be had of my life ? Well after doing some head scratching I began to look back at my life and the people I met , My daughter , My friends My wife , My family and then the pieces seem to fall into place . I spent the better part of my life never taking into consideration the impacts I've had on others life .

Yes , Some things were horrible examples of what not to do but there was alot of good that came as a result of my life simply by just coming into contact with others . You don't have to be a president or a millionaire to plant a seed of change in another persons life and for the most part the seeds I planted seem to turn out a full harvest of good . Hell , I don't know how many peoples lives I touched since I was diagnosed with this disease as a example . Was this disease part of my purpose ? Maybe so .... I have spoken to many people about this disease here in my personal life as well as in this forum . To sum it up , I have been given a good life if I die tomorrow ( Not that I want to ) and yes death brings about pain for the loved ones but it's the impact of that soul that keeps them with us long after the body has gone .


A. Ziffle
Posted 3/21/2012 4:04 AM (GMT 0)
Iluvhimso,
My thoughts and prayers are with you and your family tonight. I am so sorry you are going through this. It is so very hard when the one person that you would like to comfort you and tell you that everything will be alright is the person that is the source of distress. I will follow Angie's lead and light a candle for you tonight.

A. Ziffle-you have touched my life and made it better. Your words (and the words of other forum members) on this forum have helped me (and Dougie) through the hardest time in our life. And in part because of your words, we (for now) and for ever how long God will grant us, we have our "normal" life back...without alcohol. And I thank you for that.

Emma
Posted 3/21/2012 6:23 AM (GMT 0)
Ilovehimso... were the words of my heart every time I looked at Mike... and Im so sorry that this came about so quickly.... yes the cancer and the size... probably means all of what has been said.. two years ago.. in April... the 22nd... lost my heart.. however... I remain... here... don't pipe in often... my email is in my profile... I am here for you... I have walked down this path you are on... Mike and I were given time to draw closure... I pray for a miracle for you... as I did him... but Mike gave me so much in that time.. and that journey in the last few months of his life... was lifechanging for me... I was honored to be his life partner... with that said... you need to focus on the immediate... yes the medical.. turning over all stones... the others can help you with that... while making sure you have necessary things taken care of... his wishes... hate to put it that way but it's the truth... and there's no time to be anything but straight forward... and you seem very capable in that area... take care of yourself and ur kids... it's a lot to ask for... hospice has some good resources.. and will remain a resources... I pray for a miracle... I always do... I can answer specific questions or listen to you... if ud like ... as can others... we are here for you...so sorry to hear ... I will keep you and your family in my prayers... Sandia
Posted 3/21/2012 9:47 PM (GMT 0)
ILHS, if your hubby is not being seen at a transplant center, he should be. What they are telling you is total BS. The tumor can be shrunken via chemoembolization or killed with TheraSphere radioactive beads. It's not radiation in the usual sense. Treatment for liver cancer (HCC) has to be targeted to the tumor. They go in through the femoral artery in the groin and thread the med up into the tumor. If he passes evaluation, he can be put on the waiting list for a new liver. Has he been sober for 6 mos.? That is the requirement and it must be documented at AA meetings or an approved alcohol counseling program.

I have beat HCC twice, the second time requiring transplant. I've had some complications and just spent 8 days in the hospital, but I'm still alive. Shands had told me I would die, so I got a second opinion at Mayo and have been with them ever since.

Check out the Caregivers thread here, too.

Hugs,
Connie
Posted 3/22/2012 4:33 PM (GMT 0)
Oh goodness my hubby has been sober for YEARS , Probably like 5 years & is not a drug user either . This is why i dont understand with all his liver functions & kidney functions & all blood work being good ..How can he be dieing? I believe its the Vena filter they put in in Jan of this year ..Since then he has been going downhill ..He is now confused , to weak to hold his cup ..This morning the Chaplin came out as well as a social worker . My husband is hallucinating and just declining so fast , Its heartbreaking!! They told us they can not take out the filter because they gave him a permanent one without even telling us he would not be able to have it removed..You know how mad i am! The RN is talking about pulling him into a home if i cant get his pain under control , He tells me he's having no pain but they told me he said he is ..I dont know what to do , I ask him , he says NO MORE PAIN MEDS!!! I'M TIRED! I feel so bad because i cant find anyone to remove that darn filter to save his life . I'm confident that if i can get it removed i can save my hubby! He did not start to decline until Jan after the filter . He say's to me , Please find someone please! I told him i will do my best to find someone to take it out.

I can not find a Mayo clinic here in NC :/ I'm am sorry but every-time i turn around im crying & feel like my heart is being ripped out of my chest ..He is so confused & just looks into nothing.

I thank you all again for being here & i am so very sorry
Posted 3/22/2012 5:23 PM (GMT 0)
I didn't know much about VCFilters until this morning.  I've read a bunch on the Internet and see that there are permanent and removable filters, and the choice is a case by case basis.

I would assume there were problems with thrombocytopenia and a history of blood clots before they placed the filter. If he was throwing clots, he was in a life threatening way before they put the filter in.

There are some technical articles about removing a permanent filter if there are problems with the filter shifting or imbedding improperly.

I see a couple of articles from DUKE Medical...in their Interventional Radiology Department.

Maybe look to have a consult there.  They are in your state I think.

This sounds very serious.  I'm truly sorry that he is so ill.

Carol

Posted 3/22/2012 5:50 PM (GMT 0)
Yes well as we know HCC produces blood clots & the hospital just assumed the blood clot in Jan came from his legs ...We stressed to them it did not , Never has he had a problem with clots before . Doctor just called me & said no , no way his complications are from the filter ..Hmm! My hubby just fell for the first time , Now i know hes getting worse :(
Posted 3/23/2012 12:59 AM (GMT 0)
I have been in the program at UNC Chapel Hill and the Doctor over Hepatology name is Paul Hayshi , There team there are rated pretty high . They basically saved my life and have a outstanding facility . Hayashi is a professor also and tours the country giving research lectures . Can't say enough positives about UNC but Duke has been rated higher than them recently , We travel almost 5 hrs. round trip to get there but it's been worth it . My wife and I live in the Rockingham area of N.C . Get a referal and make a appointment with them and let them see what they can do .



A. Ziffle
Posted 3/25/2012 3:39 PM (GMT 0)
A.Ziffle

That is great news & i am so happy for you & your wife , We live 30mins east of Raleigh NC . I contacted a transplant doctor at Duke & he called me back Friday after reviewing my hubby's charts & said that he is sorry to tell me but the tumor has grown from 2cm to 6 / 7cm & that a piece of the tumor has spread up the hepatic vein to his heart? Huh? Anyway he says unfortunately there is nothing they can do at this point other then for me to make him as comfortable as possible . Another blow to the heart! I couldn't tell my lover-boy that so i told him they cant do it because he is not healthy enough . I didn't know what to say or how to tell hi that after going thru so much pain & heartache already. Last night he couldn't get comfortable at all so we didn't get much sleep & this morning he asked me to please make him comfortable , I have been trying & cant :( I feel so bad , My heart hurts as i love this man dearly & wish i could take away all the pain . He said take him to the hospital but i said let me do my best to get you comfortable here at home . Hes sleeping now . I dont want to take him to the hospital because i know what will happen , Sounds mean & bad but lets face it , they will make his brain so comfortable that he will pass ..I am selfish , I dont want him to hurt but i am not ready for him to pass . I told him the other night , That i dont want this but if you are waiting on me to say its okay for you to go , then please go baby . I dont want you to hurt anymore. I will always love you & one day i will see you again. I know that you will have your arms open waiting for me to run into them.

This is by far the hardest thing to do & go thru & i wish this on NO ONE! To watch day in & day out the love of your life & father of your children die slowly in front of you & need you for everything , loosing all his manly hood & dignity ..Its horrible
✚ New Topic ✚ Reply
123