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bratnewton
Regular Member


Date Joined Aug 2008
Total Posts : 131
   Posted 11/11/2008 6:26 PM (GMT -7)   
Hi Everyone, This will probably be my last post for a while but i will be reading. I am frusrated. I guess I should feel happy but then I don't know.
16 months ago I was told i had ESLD and Hep C and should get my affairs in order. My only hope would be of course a transplant. Ok so I had every test they dished out and went to eval in SF in Aug. Said I was great candidate for TP. Got denied because of financial reasons at the time. Ok since then have contacted a foundation gpt all paperwork filled out have been blessed with so many people that want ot help me fundraise for transplant. i WENT TO hEP DR ON 23RD. He said blood looked good, needed to lose weight but pretty much that was it. Received letter in mail stating that he didn't believe i would be a candidate for a couple of years which I guess is good. Then last Friday receive a call that the hep Dr wants to see me this Wed (tomorrow)..no reason given. Then today they called to verify appt but they said in Reno, Nevada...my appointments are always in Vegas. They said forget tomorrow and they would call back before friday if not to call them in SF.\
Ok first they basically said i am dying and to get affairs in order. Go to eval, got denied for finacial reasons. Figure out and started process for finances and now a couple years away and then they call me for appt and then now it was at wrong location. What am i supposed to think?? The Dr reduced my diuretics and I feel like I am blowing up like a balloon, my headaches have turned to major migraines and I have all these people ready to help me but now i don't need help, at least for now???? i know I am whining and there are many of you that are feeling quite crappy. I honestly medically feel worse now than I did a year ago but now they are saying wait. Hell no wonder people have anxiety I don't know what to think or do. Do I tell everyone that are ready to do fundraising forget it..false alarm. Am I really better?? Why do I feel worse?
Anyways just needed to vent !!!! I pray for all of you daily and I pray you don't have to do this. I wish I were getting treated for my Hep C at least, I will be reading posts and wishing ou all the best

Karen In Nevada

Karen

'Be kinder than necessary
because everyone you meet is fighting
some kind of battle.

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/11/2008 7:42 PM (GMT -7)   
Karen, I am so sorry that you are having such a hard time. I don't blame you for feeling frustrated. Nothing about this disease is easy. With my husband the blood work and tests show that he is staying the same, but what I see is a totally different thing (increased fatigue, increased altered mental awareness). I feel very frustrated at times.  I do know that things could be so much worse though.  He has been very fortunate compared to many others that are suffering with this disease.

I think you should continue the fundraising so you will be prepared when the time comes.

I hope everything goes ok with your doctor's appointment. Have you had any tests recently that he may want to discuss with you?

Please continue to keep us updated. Hang in there! You are in my thoughts and prayers.


Butterflythree
 
There is always hope!

Post Edited (Butterflythree) : 11/11/2008 7:46:04 PM (GMT-7)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/11/2008 8:37 PM (GMT -7)   
Karen, I agree with Butterfly.  Also, just because your blood work is okay doesn't mean you are better.  When you meet with your doctor, you need to tell him exactly how you are feeling.  If you read these posts, you know that transplant usually takes a very long time.  Hep C treatment is definitely going to make you feel worse, so that probably isn't something you should do right now.  As for the fundraising, make it clear to people wanting to help that you need to have the money together for when the time comes, but that you have no idea of when that might be, because liver disease is such a roller coaster.
 
And please don't stop posting here.
Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 11/11/2008 9:36 PM (GMT -7)   
Karen, I am so sorry that you are being given such a hard time. But definitely find out what they wanted to see you for. Maybe you should consider a different transplant center...... Each have a little different criteria for listing. But definitely keep up with the fundraising.

After my husband died......I was very bitter about the CPMC transplant program. Most of the Hep doctors were great......but my husband's evaluation coordinator was almost useless. She dropped the ball more than once on my husband's case. I'm sure that she was instrumental in it taking so long for my husband's second evaluation. So I really understand your frustration. But you have come this far so don't give up......If plan A didn't work go to plan B.

Hope you start feeling better soon........lot's of thoughts and prayers...
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

Post Edited (Pink Grandma) : 11/11/2008 9:41:25 PM (GMT-7)


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 11/12/2008 10:33 AM (GMT -7)   
Hi Karen, I too am sorry to hear you are getting treated so badly! We are also from Nevada but staying in California for now so we can be close to CPMC. so far my husband has been treated pretty well there but I am going to keep on top of them. Is your hepatologist's name Gish??? He does have an office in Reno. Anyway, hopefully they will get their act together soon,

Judith
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