Hep C Discussion Forum

BeingOral · Member

RE: TRANSPLANT THREAD

Vectorwoman · Senior Member

I have you in my prayers :) Hang in there :)

GM5 · Member

Let's see if I can finish this part.
Now it's rehab time here in the hospital and the push is on to get me up and walking as well as getting my meds adjusted.
A therapist will come around most every day and at first they ran me through a few simple exercises from a chair. Then it's walks down the hallways escorted by the therapist to make sure you don't fall. I had to use a walker for a time until I got my muscles back enough in order to walk without it. I've never felt so helpless in my life, but, time does heal all wounds, and eventually I was able to walk with the walker by myself. I wanted to because laying in bed or just sitting in a chair starts to make your body sore. So I would go and walk, any time, day or night if I couldn't sleep.
Here is a part, that at times, kind of ticked me off. I am eating breakfast, and here comes all the Docs with their entourage<spelling maybe, and maybe a therapist, all coming to see me at the same time. I'm still having a hard time with my appetite, and I have to stop eating. Questions are asked, reports are looked at as well as looking at my incision and the like. I know they have lots of patients to see and I understand. But now my food is cold. Eat the fruit, drink the milk, I'm done. The Docs always mentioned I need to eat. Ok Doc, I will give it my best.I got to the point where I started to ask the therapist if they would come back after I ate, they did. I should of learned this earlier. Overall they were very accomodating. It took months, maybe six or more to get my taste buds back to normal. I'm not even sure today if I'm back to what I was taste wise, but it's ok. I lost 30 pounds while in the hospital, which was probably good. I've gained about half of that back or more. I need to hold the line.
One other thing I will mention and be done with this part, is that until about the last two weeks in the hospital, my tolerance for visitors was kind of short. Now don't get me wrong. I liked visitors, all family, but after awhile I would get agitated sometimes. Was it the meds, or just my condition, probably a combination, but I remember my brother and his wife came to visit, I love my brother very much and we are close, but he started to get me upset. It wasn't anything he said or done. He was just being himself. He's a lot like me in ways. We are a year apart almost to the day in age. His wife noticed and said, it's time to get you ( my brother ) home and feed you.
The last two weeks, you couldn't send enough people to visit. I was a talking fool. I don't think I've stopped, lol.
That's it for this part. There is a lot not mentioned and I could write a book on this adventure. After the next part, Part 4, Going Home, I might summarize with things that I've not mentioned to this point, maybe not, we'll see.
Have a good week!

GM5 · Member

Part 3? I think so. The hospital stay:
I'm very glad to hear Rio is doing well. I read his blog just a minute ago and am up to date to this point.

Here goes. I will probably miss things but if I remembered and posted all of it, this post would be very long.

The first week after surgery is kind of blurry, but what I do remember is having a few visitors, relatives, and being able to push the button for pain relief. I don't know what the drug was or even care as long as it worked. It has a timer on it and the drug is metered. Sometimes I was not sure whether it was day or night, especially at dawn or dusk. There was a clock on the wall but they don't differentiate day or night, so I had to ask. No big thing at this point. As I was told by others, family, I was suppose to go home on I believe the 7th day. Well, that didn't happen, luckily, because I went into septic schock, NOT a good thing. Then I was put on life support. What a trip that was. Tubes, not only in my arm, through your chest ( I think this was done before surgery actually ), and a tube or two down my throat. So for me, what do I think about while this is going on, WATER. I thought and dreamed, WATER, almost constantly.
Then when you want to say something, of course you can't, so it's trying to write on paper what you are trying to convey. What a pain in the arse trying to do that. Picture this.
Laying on your back, trying to hold a clip board, and writing up. Your body is weak, your writing becomes smaller as you write, and the nurse or who ever it is your trying to get the message across too, either understands or NOT, because the printing gets sloppy, and major frustration sets in. ( you would think they would have a way to do this with a keypad or something, pretty simple really ).
At this time, they had to suck out my lungs every once in awhile. Damn that feels good afterwards. Pretty soon I learned to do it myself because you can feel where to move the suction tube too. Before I learned, a nurse asked me if I wanted to do it. I think, are you crazy!! I actually thought maybe she was new and didn't know what exactly to do, and I think, oh great, I get the newbie tonight. But as I rethink this, I know where she was coming from, because after I started doing the suction myself, I told them I would do it by hand language or whatever. It kind of hurts, but you know how good it will feel after,so you just do it.
I'm not really sure how long I was on life support, maybe a week, maybe longer, and somewhere along the line they had to go back in where they made the incision, and it's a good posibility it was when I went into schock. The first month is kind of a blur, out of the 8 weeks I was there. The last 4 weeks was a rebuilding of my body and getting my system on an accepted level. Oh, did I tell you how good that first drink of water tasted. OMG!, the best drink I've ever had in my life. I drank it down like a person who has just walked across the desert and hasn't had water in days, and of course I drank it too fast and suffered some, but damn it tasted good.
Please, again, remember this. I was not a normal recipient of a liver. Most people go home in about a week with support and healing time ahead. Your support people, your going to need them. Your going to be tired and energy needs to be regained. How long is an individual thing. They say for every day you are in bed, it takes three to get back to normal. I believe it.

So. Here I am, out of ICU, have my own room, IV lines still attached, a good thing, and two plastic bags with tubes attached and the other ends coming out of my body. Drains. I guess it's normal to have fluid buildup ( or maybe not ) and one of those may be close to your lungs, which, makes it hard to breathe because the fluid won't let your lung expand as it should. It took awhile to get this fluid problem under control, and it also too me awhile before my breathing got back to somewhat normal. Breathing exercises with this plastic machine, I forget the name of it now, and antibiotics. The breathing gizmo really works, and everyone who comes around you, nurses, docs, therapists etc., will ask, have you been using your gizmo? Yep, got it right here, I'd say. I did use it pretty often, but I'm sure not as much as they'd like me to. You need to use it after the hospital stay also for awhile.
Ok, moving on here. The food menu was extensive I thought with a wide variety and it looked good when they brought it to me. My taste buds were shot! And my appetite wasn't that good. They both came back, although very slow, and I had to really force myself to eat. At first even fruit was hard to eat, milk was ok, and off the top of my head, the only thing I ate and somewhat liked was their clam chowder. It seemed like it took me forever to be able to eat much of anything while in the hospital. Believe me I tried, mostly because my bodily functions were slow to recover and when that day came, it's party time. My kidneys were having a hard time coming back and I was on dialysis many times ( for me, dialysis wasn't that big a deal, no pain or anything like that, and if it weakens you, I was already there ). Finally, one morning, when I got up to go to the bathroom, and pee in the measured container, I knew I was back to normal. Thank God. When I said party time, I meant it. The nurses are so happy. That's why they are there, and after all their work, things come around. They've accomplished what they started out to do. I fully understand that.
It's getting late here. I will finish tomorrow evening. Hopefully I am not giving information that will put someone off from transplant. That is NOT my intention at all. I will support organ transplant till the end of my time, and I will definately give the U of W my highest kudos. Because of them, I am still here, THANKYOU!
It gets better. Stay with me. Till the next time, smile smile

< I guess that's smiling, and take care.

Vectorwoman · Senior Member

Moocow wrote:

It sounds as though you are running out of choices and you can get SSI and still have a job, but the income you make would be limited.

That is true. but to get on it is it best not to show any ability to work. It's not easy to get them to approve you.

I had arthritis and depression also so they sent me to several docs. (They paid for it). The Lawyer told me to not work @ all. Once approved then you can work part time.

Moocow · Guru

It sounds as though you are running out of choices and you can get SSI and still have a job, but the income you make would be limited.

SonniQ · Member

Thanks for writing. I don't think I can go the disability route just now. I have a business. Since I've gotten the fluid level down and my energy has gotten better, even though I have to pace myself, I'm back at the store about 4 days a week. Since sales have gotten so bad my profit is scary. But I still have to live. I couldn't live on SS disability anyway. But I can't afford to provide insurance for my 2 employees or for myself. For all the tests and lab work I've had done so far, though, I qualified for low income aid, but I didn't tell them about the store because it's incorporated and I don't give myself a paycheck so nothing would show up anyway. Those tests - MRI etc and labs would have cost thousands of dollars.

Vectorwoman · Senior Member

{{{IN RESPONSE TO SONNY Q}}} How to get started in America if you have no insurance. They only way I know of.

At the time I found out that I had it; I had been working in the paint department of a louvered shutter factory.
Fromm using thinner and breathing fumes 8+ hours a day. I got so sick my doc said I had to quit working period or I would die.

I had to get a social security disability lawyer. You don't pay them till you get your retroactive money then they get a percentage of that.

You cannot show any income while you are going thru the process. Back then the process took a year or longer in Ga. It is somewhat quicker now and some states are better than others.

I had to quit my job, let my small children move away to live w/ their Dad. I was in Ga. He was in Co. (Very far apart).

I had to move in w/ my parents and let them support me plus Mom nursed me back to health by waking me every morning and making me eat etc. She saved my life.

It was very hard that year. Retroactive money for a year added up to around 7,000.00. I emediatelly got my kids back and started a new phase in my life. I could write a book from then on and someday I might.

You can get a free cunsultation from a soc. sec lawyer. I would as soon as possible.

I wish you well. You are in my prayers.

-- Edited by Vectorwoman on Monday 8th of February 2010 04:00:37 AM

GM5 · Member

Sorry I haven't posted in awhile. Between lazy and finding time is my excuse.
Sonni. I don't know what country you live in, but your Doctor or someone in his or her office should be able to direct you to some kind of financial assistance, just ask them.
Also, I will try and get to the next part of my transplant journey next week. Monday I spend most of the day at the hospital for routine labs, biopsy etc. This is for my first annual checkup, then a clinic with the Doc on the 26th of February.
I read what you said about Medical Ozone, Hobo.
I'm going to have to research that one, curious. I wonder why it's not more popular!

Take care.

greenqueen · Guru

Hi Sonni,

That's a great pic!

Hopefully GM5 and Rio will get back to you on this and if you need any other info, please don't hesitate to ask

Steff xx

SonniQ · Member

SonniQ wrote:
Me on the right with my mom at Fantasy Fest
I guess this falls under transplant thread. I haven't seen this mentioned anywhere. Because of pre-existing illnesses and diagnoses of Hep C 12 years ago I am one of the many uninsured. How would someone in my shoes even be eligible for a transplant? I don't work for a company that provides insurance. I don't know what my meld score is yet, but my drs have told me that needing a transplant is not too far down the line. I have cirrhosis, had a bad run with ascites and am finally working again - parttime. Has anyone had this experience or know of anyone who has?

Thanks - Sonni

SonniQ · Member

I guess this falls under transplant thread. I haven't seen this mentioned anywhere. Because of pre-existing illnesses and diagnoses of Hep C 12 years ago I am one of the many uninsured. How would someone in my shoes even be eligible for a transplant? I don't work for a company that provides insurance. I don't know what my meld score is yet, but my drs have told me that needing a transplant is not too far down the line. I have cirrhosis, had a bad run with ascites and am finally working again - parttime. Has anyone had this experience or know of anyone who has?

Thanks - Sonni

rio · Member

Thanx for that, that seems to be the problem, I can put the discs in ok but the laptop doesn't recognise the file format.

Any idea what software to use to open it and save it so that Ican change it to a file format that I can upload it to YouTube - and it has to be really simple to use cos I'm a real dummy at this kind of stuff.

I'm OK once I've done it a couple of times so that I can replicate the task but gettin me there in the fist place is areal pain in the arse!

thanx again .... rio

smialls · Senior Member

Hi Rio.
This could be an easy one or a difficult one depending on your CD rom.

If you have the type where the draw comes out so that you can put the cd in, well you can just put in your mini disc and If your computer can read the disc then just copy the files onto your computer.
You may need to find and download the nessesary codec if your computer does not play them. I Hope this helps.

Mr N Smialls

rio · Member

p.s. Just to let you all know, I am still currently working on my video diary of my HepC/Liver Transplant journey - just trying to work out some technical stuff!

Mainly, I shot it on a Sony Handycam that uses MiniDiscs but does not support PC download, so trying to work out how I can get the Vid from Camera to PC so that I can upload to YouTube.

Any advice appreciated but please be aware you would be dealing with somewhat of a Technophobe who's concentration span is that of a guppy!

thanx .... rio

rio · Member

Thaks for sharing that, absolutely brilliant piece.

I am waiting with bated breath for th next part...

rio

GM5 · Member

Part 2: Steps for elegibility.

     Here is where the patient really gets put through the paces. I mean this literally. I ran my arse off. going here, talking to people there, labs, scans, on and on.
    If I remember correctly I started the steps from my Gastro Doc in Feb. 2008. In June 2008 I received my referral from my HMO ( medical plan from work ) to the transplant center, which has a time limit of 6 months. No problem getting that extended when the time came. Some of the test were done by my HMO and some done by the transplant center and I will tell you now who that is. University of Washington, Medical Center, Seattle.
All I can say about this orginization is they are the BEST, top to bottom. I am very fortunate.
    So let me get some of this information out of the way, and I have a Selection Criteria sheet that was given to me a long time ago, along with what seems like endless other information facts and sheets, but I somehow have them somewhat, lol, orginized. The following is a just a brief explanation.

     Have irreversible liver failure.
     No chronic untreatable infection.
     No severe pulmonary or heart disease.
     Not have a current cancer or a cancer than can be re-
       activated by meds needed to treat transplant patients.
     Have a way to personally understand and manage or have
       someone help you. SUPPORT.
     Have a weight with a BMI less than 40.
     Not be using street drugs or smoking marijuana ( you will
       be tested ).
     No alcohol for the last 6 months.
     No untreatable mental illness.
     Adequate insurance for transplant and post transplant meds
     Support following transplant. ( spouse, relative, friend, your
       going to need them ).

     Let's see if I can summarize before the next Part.

     I almost forgot this part, which in a weird way helped me I suppose to get on the transplant list and actually move me up towards the top. They found a tumor inside of my liver, so they sent me to a cancer center to talk to a Doc there. A few things came out of this. One, I have a cancerous tumor, INSIDE the liver. Inside being the key word, outside, UNtreatable I was told. Once outside it spreads to the lungs and bone marrow. Not good. Two, the size of the tumor was 4 cm, finding out that that is the maximum size allowed for transplant. So in order to try and reduce the size, they injected chemo directly into the tumor. Reducing would be the ultimate goal, but they really don't want the tumor to enlarge. I think what happens if it's too large is that it just takes over. What the chemo does, at least in my case, is to cut off the supply of what it needs to survive, blood supply. How it actually does that, I don't know. I have gained so much knowledge in this department, I could never remember it all. That's why I keep the paper work. Then all I have to do is remember where I put those, lol.
Where was I. I tend to go on tangents some times. I'll have to reread this and maybe edit later.
Anyway, I was put on the transplant list on a Friday, Sunday night just after going to bed, I got a phone call. Be there in the morning. Luckily I took my handheld phone to bed with me. I really did not expect a call so soon. I kind of went into numb stage and just did what I had to do. Made a call to my support people, work etc. Went to the hospital early Monday morning, had the surgery sometime in the afternoon.
    I am going to finish this part and will add later if need be,
      but I have to say this. To those who are afraid to test for
      HepC, can you see where if you wait too long, that the
      situation will probably get worse. Probably will anyway.
      Remember the tumor. Keeping the size of it down in order
      to be able to transplant. Give the docs a chance. Damn I
      hope they find a vaccine soon. If you recall or read a pre-
      vious post of mine, you still have HepC after transplant.

Hugs for all, take care.
I will post another Part later, The Hospital Stay.

GM5 · Member

PART 1: You have HepC! My reply, WHAT.

Good morning. Even though some are from various countries in the world, it's still morning where I am. biggrin I haven't figured out these emoticons yet. When I mouse over one, it doesn't say what it is. Is their an option for that?

     I think I will post this in segments, Part 1, Part 2 etc. That way I can focus hopefully better and won't be rambling back and forth, and can take a break in between.

    Like I mentioned before, I found out I have HepC through an annnual physical approximately 10 years ago. From that point on I started doing some research, I'm sure we all did and do. Then at some point I was referred by my family Doc too an internal medicine Doc and subsequently treatment, non-responder. Compared to others, TX went fairly easy for me, but I have heard many stories on how others faired from TX, good to terrible. During this period of time, about six or seven years, I forget now, I've had several scans and blood draws off and on for monitoring purposes and my first biopsy. Had a visit with an Oncologist a couple of times and reviewed a CT Scan with him, and telling me all about the negative possibilites, cancer. I had no signs of cancer at that time.
    As time went on I was referred to a Gastroenterologist and underwent more lab work and some other tests, endoscopy was one, which found I believe it was esophagal varices, and put on some meds for that. I have most of all my test results saved and can look up results if needed or to compare.
My labs eventually went out of range far enough that my Gastro Doc wanted to check my MELD score to see if I was elegible for transplant, and I was, so he referred me to the transplant center.
     MELD: Model for End-Stage Liver Disease
Numerical scale from 6, less ill, to 40.
The MELD system is used for adults, there is also a PELD system, pediatric patients.
The MELD number is calculated using three lab test results:
     Bilirubin- measures how effective the liver excretes bile.
     INR ( prothrombin time )- blood clotting factors.
     Creatinine- measures kidney function.
    >> You may or may not know this, but your kidneys are
         affected by liver disease<<

     Ok. Enough of this part. I will submit and start Part 2 after a break. It gets more interesting and very involved and somewhat frustrating.

GM5 · Member

Sounds good. It's late tonight for me to start with the telling of my experience, but I will post tomorrow night if possible.
Take care all.

rio · Member

Hi everyone,

So some of you will already know from my blog that I am currently on the waiting list for a liver transplant at St. James hospital in Leeds. My treatment at St. Jimmy's has been nothing short of excellent so far and anyone fortunate enough to be treated there can rest assured they are in good hands.

I am fortunate in so much that I never really had any symptoms of Hep C in the 25 years that I had it prior to my diagnosis, but unluckily that meant I had HCV for that long before we realised I had it and so we started treatment on the back foot.

After being diagnosed and subsequent liver biopsy I was told that it was also too late for combination therapy.My liver was already too badly scarred.

My only other option was a liver transplant and that would not be possible because I drank fairly heavily, partly because I loved a drink but also because that was my job, I had owned a pub business for 10 years or so!

After going home and discussing it with my wife and taking a long hard look at my 2 beautifull and very young children, we realised that our only option was to get rid of our pubs and for me to take my health seriously (something I'd never had to do before) and quit drinking.

It wasn't easy, I can tell you that, my life has completely changed, but now I'm waiting for that miracle to happen and the phone to ring and be told to make my way to St. Jimmys.

As I have had said, I have been writing about my experiences on my blog and I'm about to start a video diary which I hope will provide practicle info about my transplant as it happens and post that on my blog too.

For now I try and keep myself as fit and healthy as poss without overstretching it, and I sleep a lot. I do get down about it all sometimes but I'm told thats normal and if I ever do need a little help I look to my family and thats all the inspiration I need.

If anyone does want to talk to me, get in touch via this forum or through the blog my email address is on there too.

Otherwise I'll keep an eye on this thread and again soon

Keep well everyone ..... rio

http://www.ianquill.blogspot.com

-- Edited by rio on Thursday 7th of January 2010 11:39:34 PM

greenqueen · Guru

Hi GM5 and Rio

I thought a thread dedicated to all transplant issues and info would be a good idea - will make it a "sticky", later on today.

It would be great to hear from anyone who's had a transplant or is waiting for one - your experiences could really help a lot of people who are just browsing the forum, so to speak, as well as members.

Any transplant info could be posted on this thread, too.

Steff xx

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