Re: Re: Got back from SF TP Eval - Hi in Nevada

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Deb, I live 40 miles north of Las vegas. There is a small hospital 25 miles north of me. There are lots of hospitals in LV. The surgeon in SF said he wouldn't trust his worst enemy or his sister to Las Vegas.There are two hep Dr's from San Francisco that practice in LV. I don't know what to think of the TIPS procedure being done in Vegas. Has anyone had this done? I'm not even sure what it all entails. Is it that big of an ordeal that I should go back to SF to the TP hospital to get this done? We are on a very very limited budget. $976 a month for my husband, myself and two teenage boys.Luckily for the eval I went through a foundation in Vegas that paid for airfare and shuttle from airport to hotel. The hospital paid for the hotel. This foundation only helps low income tp patients, but only one time in a calendar year. I don't want to abuse any

foundation even if I need it. My MELD was only a 6, but they said they were going to put me on the list. My husband who was completely and still pretty much is , naive to this whole thing except that I am sick. Now after the trip he thinks that between the tips and TX I am going to be completely well, but if I had to get TP it wouldn't be for many many years. I try my best to stay positive and keep the faith about all of this but don't want to stray from reality. That's why I am so grateful to have found this site a few weeks ago. I have learned so much. The reason I was only there for 3 days is the first day was just the flight there, the 2nd and 3rd, I only saw the social worker, the hepatoligist, financial rep, support group and an evaluation consultant. I am on medicaid from Nevada and they would not pay for the nutritionist or a psychiatrist etc. I did give blood and then was sent back to give more blood to see how advanced my HEP C was

(which i did not get results yet) So I am relying on all of you to help me with my diet (what and what not to eat and drink) and to keep my sanity. I have had bad bouts but not consistant of encephalopathy. I quit drinking 1 year ago the 23rd of this month and quit smoking on July 2nd of this year. I have some muscle wasting but it doesn't look as bad since I quit smoking because I ate everything in sight for 3 weeks and now have major ice cream cravings. My biggest complaint for the past few weeks is the constant muscle and bone or all over aches. Feels like the flu 20 times over. I am on spirlacton 300 mg and furosemide 40 mg and at the eval was told to take the lactulose daily instead of just when I get consipated. I have esophageal varices which the eval said I will probably get banded. I used to get very severe ascites but under better control with new meds (as of May 29th). The hep Dr in SF said hat they will probably up my dosage of diuretics. I

don't want to complain too much because there are some of you much worse than myself but it is nice to be able to get things off my chest to people who know what I am talking about. I will try to daily post something that will make us all smile on a daily basis if I can if nobody minds. Please any and all advice appreciated."when faced with a mountain, I will not quit!" Newton in Nevada From: Deb <posttransplant@...>Subject: Re: Got back from SF TP Eval - Hi in NevadaHepatitis Cfordummies Date: Saturday, August 23, 2008, 10:24 PM

Honey you just hang in there. Great news a great candidate for transplant !!!!!!!!

We know it gets very hard some days just do your best always hope for the best and keep us updated about you. We are here for you all the way good and bad days.

Some Dr's now believe even if lower or maintenance doses of tx meds for pt's medical necessity before a transplant can have advantages and gives a person maybe more time to recoup and better after a transplant. Their Chronic HCV not as fast or aggressive returning as quickly less complications and for starting tx again sooner after a clean transplant. The lower the viral load before transplant the better.

There is no medical care for you your stage complications now or needing TIPS and for the future nearer to you ??? What happens if you need that advanced level of ER medical liver care Dr's and hosp's do you have it near you or flown out air med evac to Calif - same when called for transplant ????

Not simply being nosy concerned for you. I have been there. The traveling is going to get rough on you and for the future and your level of medical care specialists needed.

We do what we need to do. We find ways. We cope and never give in or give up.

All The Best

Deb

Well I just got back from San Francisco from getting a liver transplant evaluation. Bottom line is; I am a great candidate for a liver. My liver disease (cirrhosis) has not worsened in a year.( guess thats from giving up alcohol) also quit smoking on July 2. Anyways I have not heard back in regards to how much my Hep C has progressed, but I have portal hypertension and sometime in near future will be going back to SF (if I can find financial help again) for a "tips" procedure to where they insert a stent in portal

vein to help blood flow

or something like that. Got to read up on that more on internet. Anyways after they do that and everything is OK they will give me treatments for the Hep C (which from what I understand can be as bad if not worse than chemo) and hopefully get rid of Hep C so when I get my new liver in won't get infected with it. If by some reason the Hep C does come back after new liver it won't be as bad.Other than that when all appts. were done for the day (we were there for 3 days), we went sightseeing. Went to fisherman's wharf, downtown city hall area, farmers market and china town. What a city. Way too many people and cars.Oh well thats my latest and greatest

Newton in Nevada