Re: Re: Clinical Encounter Report

[Guest guest]

Well, SteveI take everything back!! We are about the same age. Yes, I would have had to think hard about a transplant if it were the same situation that you have just described. Very very fortunately, when my two tumours were found in 2009, they were still operable. Thus, in April 2010 I was in for a liver resection.Usually we hear horror stories about the long wait lists etc. How come you were so fast on and up that list?? I mean, how wonderful for you!! Do you think it was because of the diagnosis of cancer over everything else?GloriaApology not required. Not sure of your age. Age will effect your "eligibility", so to speak. For me it took 2 months to get on the list, 4 months of waiting then bingo. Basically I was transplanted on a Monday and was eating dinner at home on Friday, 5 days later. I was 56 when I got the new liver, 3 years ago. Diagnosis was heptacellular carcinoma due to HCV. Presented with a 3cm non-operable liver tumor.

A transplant is not the nightmare many imagine. At least not for me. Transplanted at Henry Ford Hospital in Detroit. I highly recommend.

be well.

steve

=================================

[Guest guest]

Here's an odd question relating to transplants. My Gastro told me it would not be a transplant situation but a donor situation. What the hell does that mean? I just remembered that! I had so many other things going thru my mind at the time, I just let that one go right on by.

Any thoughts?S. Colette Wise

From: gadamscan@...Date: Mon, 21 Feb 2011 18:47:10 -0800Subject: Re: [ ] Re: Clinical Encounter Report

Oh SteveI am so sorry!!! My reasons for not wanting a transplant are absolutely mine, only. I truly do not have anything against them at all, it's just that I think at my age, I could just say pass and allow a younger person to live.You are probably an example of what I mean!! I'll bet you are quite a number of years younger than I am. The getting sick and then being on a list, takes years and years - so, you would have been quite young. Good on YouGloria

sorry for the delayed response to your post........however...You may one day decide to change your mind regarding a transplant as being "the most revolting, disgusting thing I could imagine." For me it was a godsend which I found to be a beautiful, lifesaving experience. There is nothing revolting or disgusting about a liver transplant.be wellsteve>> Hi > > Well I went to that new Doctor and asked him a bunch of questions. Like, Do you know the Standard of Care for HepC patients? That woke him up a bit. I got referrals for ultrasound, my last one was a year ago. And there’s a new hepatology clinic in town; so I got a referral to that. I’m in Seattle, BTW. > > The other hepatologist, Maggie Shuhart, does a clinic every Thursday morning at the charity hospital, Harbor View. Now there is another one, at Swedish Hospital, in conjunction with their new Transplant Clinic. Since I’ve already talked to Shuhart and been to the Harbor View clinic, I decided to go see what this new hepatology clinic is all about. > > There was recently a case here in Seattle where the hospital refused to give a liver transplant to a Medical Marijuana patient, because they consider Medical Marijuana users “drug addicts.” So I said to this new General Practitioner, well, that sounds nice over at Swedish, but they won’t give me a transplant because I use Medical Marijuana. But he told me that the new Swedish hepatologist had spoken to their clinic, and said that they are no longer absolutely refusing transplants to MM users. > > Not that I want a transplant; it’s about the most revolting, disgusting thing I could imagine. But the body has this way of wanting to live, and who knows what I would decide when the time comes. > > I want to thank, I think it was Teri, who recommended I go into these doctor visits with the attitude that I have my sick baby, my liver, and I have to take charge and press for answers. It worked for me, and I felt more grown up than I have . . . well, ever. > > Cynde>

[Guest guest]

Hi Colette

The difference is that with a transplant you recieve a whole new liver.

The doner thing may be a living or dead donor, meaning that you may recieve a partial transplant, or your liver may go to someone else when you die.

What are you pissed about? [Previous posts.]

love

don in ks

From: Colette Wise <scwise@...>Subject: RE: [ ] Re: Clinical Encounter Reporthepatitis Date: Tuesday, February 22, 2011, 8:25 AM

Here's an odd question relating to transplants. My Gastro told me it would not be a transplant situation but a donor situation. What the hell does that mean? I just remembered that! I had so many other things going thru my mind at the time, I just let that one go right on by. Any thoughts?S. Colette Wise

From: gadamscan@...Date: Mon, 21 Feb 2011 18:47:10 -0800Subject: Re: [ ] Re: Clinical Encounter Report

Oh SteveI am so sorry!!! My reasons for not wanting a transplant are absolutely mine, only. I truly do not have anything against them at all, it's just that I think at my age, I could just say pass and allow a younger person to live.You are probably an example of what I mean!! I'll bet you are quite a number of years younger than I am. The getting sick and then being on a list, takes years and years - so, you would have been quite young. Good on YouGloria

sorry for the delayed response to your post........however...You may one day decide to change your mind regarding a transplant as being "the most revolting, disgusting thing I could imagine." For me it was a godsend which I found to be a beautiful, lifesaving experience. There is nothing revolting or disgusting about a liver transplant.be wellsteve>> Hi > > Well I went to that new Doctor and asked him a bunch of questions. Like, Do you know the Standard of Care for HepC patients? That woke him up a bit. I got referrals for ultrasound, my

last one was a year ago. And there’s a new hepatology clinic in town; so I got a referral to that. I’m in Seattle, BTW. > > The other hepatologist, Maggie Shuhart, does a clinic every Thursday morning at the charity hospital, Harbor View. Now there is another one, at Swedish Hospital, in conjunction with their new Transplant Clinic. Since I’ve already talked to Shuhart and been to the Harbor View clinic, I decided to go see what this new hepatology clinic is all about. > > There was recently a case here in Seattle where the hospital refused to give a liver transplant to a Medical Marijuana patient, because they consider Medical Marijuana users “drug addicts.†So I said to this new General Practitioner, well, that sounds nice over at Swedish, but they won’t give me a transplant because I use Medical Marijuana. But he told me that the new Swedish hepatologist had spoken to their clinic, and said that they are no

longer absolutely refusing transplants to MM users. > > Not that I want a transplant; it’s about the most revolting, disgusting thing I could imagine. But the body has this way of wanting to live, and who knows what I would decide when the time comes. > > I want to thank, I think it was Teri, who recommended I go into these doctor visits with the attitude that I have my sick baby, my liver, and I have to take charge and press for answers. It worked for me, and I felt more grown up than I have . . . well, ever. > > Cynde>

[Guest guest]



After I wrote of my disgust of liver transplants, and hit 'send,' I realized I might get some pushback from people on this board who have had a liver transplant.

Steve, it sounds like you had a positive experience with your transplant. I appreciate your sharing your experience and your good feelings about the outcome so far. Your feedback is much appreciated, and has caused me to pause and think some more.

Cynde

Re: [ ] Re: Clinical Encounter Report

Well, SteveI take everything back!! We are about the same age. Yes, I would have had to think hard about a transplant if it were the same situation that you have just described. Very very fortunately, when my two tumours were found in 2009, they were still operable. Thus, in April 2010 I was in for a liver resection.Usually we hear horror stories about the long wait lists etc. How come you were so fast on and up that list?? I mean, how wonderful for you!! Do you think it was because of the diagnosis of cancer over everything else?Gloria

Apology not required. Not sure of your age. Age will effect your "eligibility", so to speak. For me it took 2 months to get on the list, 4 months of waiting then bingo. Basically I was transplanted on a Monday and was eating dinner at home on Friday, 5 days later. I was 56 when I got the new liver, 3 years ago. Diagnosis was heptacellular carcinoma due to HCV. Presented with a 3cm non-operable liver tumor.

A transplant is not the nightmare many imagine. At least not for me. Transplanted at Henry Ford Hospital in Detroit. I highly recommend.be well. steve=================================

[Guest guest]

Oh this guy is a REAL gem!Transplant vs Donor...  In order to get a transplant you need to be put on the " Transplant List " and there is criteria to get you there.  There are also things that will keep you off the list..  such as drug use and alcoholism among other things... my bet.. this guy is assuming " alcoholic " and has already pre-determined that you won't fare well on the list.  With a living donor, someone gives you a piece of their liver... someone alive and usually someone you know.  If someone is wiling to give you part of your liver the hospital cannot deny it like they can a transplant...  

I keep wondering if I could dislike this doctor more... then you give me more information and I do!   Holy crap no wonder you are pissed off.  We need to find you a Hepatologist close to you post haste!

Hugs,TeriOn Tue, Feb 22, 2011 at 8:25 AM, Colette Wise <scwise@...> wrote:

 

Here's an odd question relating to transplants.  My Gastro told me it would not be a transplant situation but a donor situation.  What the hell does that mean?  I just remembered that!  I had so many other things going thru my mind at the time, I just let that one go right on by.

 

Any thoughts?S. Colette Wise  

From: gadamscan@...Date: Mon, 21 Feb 2011 18:47:10 -0800

Subject: Re: [ ] Re: Clinical Encounter Report

 

Oh SteveI am so sorry!!!  My reasons for not wanting a transplant are absolutely mine, only.  I truly do not have anything against them at all, it's just that I think at my age, I could just say pass and allow a younger person to live.

You are probably an example of what I mean!!  I'll bet you are quite a number of years younger than I am.  The getting sick and then being on a list, takes years and years - so, you would have been quite young. 

Good on YouGloria 

sorry for the delayed response to your post........however...You may one day decide to change your mind regarding a transplant as being " the most revolting, disgusting thing I could imagine. " For me it was a godsend which I found to be a beautiful, lifesaving experience. There is nothing revolting or disgusting about a liver transplant.

be wellsteve

>> Hi > > Well I went to that new Doctor and asked him a bunch of questions. Like, Do you know the Standard of Care for HepC patients? That woke him up a bit. I got referrals for ultrasound, my last one was a year ago. And there’s a new hepatology clinic in town; so I got a referral to that. I’m in Seattle, BTW.

> > The other hepatologist, Maggie Shuhart, does a clinic every Thursday morning at the charity hospital, Harbor View. Now there is another one, at Swedish Hospital, in conjunction with their new Transplant Clinic. Since I’ve already talked to Shuhart and been to the Harbor View clinic, I decided to go see what this new hepatology clinic is all about.

> > There was recently a case here in Seattle where the hospital refused to give a liver transplant to a Medical Marijuana patient, because they consider Medical Marijuana users “drug addicts.” So I said to this new General Practitioner, well, that sounds nice over at Swedish, but they won’t give me a transplant because I use Medical Marijuana. But he told me that the new Swedish hepatologist had spoken to their clinic, and said that they are no longer absolutely refusing transplants to MM users.

> > Not that I want a transplant; it’s about the most revolting, disgusting thing I could imagine. But the body has this way of wanting to live, and who knows what I would decide when the time comes. >

> I want to thank, I think it was Teri, who recommended I go into these doctor visits with the attitude that I have my sick baby, my liver, and I have to take charge and press for answers. It worked for me, and I felt more grown up than I have . . . well, ever.

> > Cynde>

[Guest guest]

Sorry.

Mostly pissed at myself for allowing me to stay in the dark for so long. I should have gotten myself educated about my HepC LONG before now. Being pissed doesn't do me any good but I had to start somewhere.

Thanks for outing me. S. Colette Wise

From: ludichrist2000@...Date: Tue, 22 Feb 2011 08:20:43 -0800Subject: RE: [ ] Re: Clinical Encounter Report

Hi Colette

The difference is that with a transplant you recieve a whole new liver.

The doner thing may be a living or dead donor, meaning that you may recieve a partial transplant, or your liver may go to someone else when you die.

What are you pissed about? [Previous posts.]

love

don in ks

From: Colette Wise <scwise@...>Subject: RE: [ ] Re: Clinical Encounter Reporthepatitis Date: Tuesday, February 22, 2011, 8:25 AM

Here's an odd question relating to transplants. My Gastro told me it would not be a transplant situation but a donor situation. What the hell does that mean? I just remembered that! I had so many other things going thru my mind at the time, I just let that one go right on by. Any thoughts?S. Colette Wise

From: gadamscan@...Date: Mon, 21 Feb 2011 18:47:10 -0800Subject: Re: [ ] Re: Clinical Encounter Report

Oh SteveI am so sorry!!! My reasons for not wanting a transplant are absolutely mine, only. I truly do not have anything against them at all, it's just that I think at my age, I could just say pass and allow a younger person to live.You are probably an example of what I mean!! I'll bet you are quite a number of years younger than I am. The getting sick and then being on a list, takes years and years - so, you would have been quite young. Good on YouGloria

sorry for the delayed response to your post........however...You may one day decide to change your mind regarding a transplant as being "the most revolting, disgusting thing I could imagine." For me it was a godsend which I found to be a beautiful, lifesaving experience. There is nothing revolting or disgusting about a liver transplant.be wellsteve>> Hi > > Well I went to that new Doctor and asked him a bunch of questions. Like, Do you know the Standard of Care for HepC patients? That woke him up a bit. I got referrals for ultrasound, my last one was a year ago. And there’s a new hepatology clinic in town; so I got a referral to that. I’m in Seattle, BTW. > > The other hepatologist, Maggie Shuhart, does a clinic every Thursday morning at the charity hospital, Harbor View. Now there is another one, at Swedish Hospital, in conjunction with their new Transplant Clinic. Since I’ve already talked to Shuhart and been to the Harbor View clinic, I decided to go see what this new hepatology clinic is all about. > > There was recently a case here in Seattle where the hospital refused to give a liver transplant to a Medical Marijuana patient, because they consider Medical Marijuana users “drug addicts.” So I said to this new General Practitioner, well, that sounds nice over at Swedish, but they won’t give me a transplant because I use Medical Marijuana. But he told me that the new Swedish hepatologist had spoken to their clinic, and said that they are no longer absolutely refusing transplants to MM users. > > Not that I want a transplant; it’s about the most revolting, disgusting thing I could imagine. But the body has this way of wanting to live, and who knows what I would decide when the time comes. > > I want to thank, I think it was Teri, who recommended I go into these doctor visits with the attitude that I have my sick baby, my liver, and I have to take charge and press for answers. It worked for me, and I felt more grown up than I have . . . well, ever. > > Cynde>

[Guest guest]

Cynde,I am glad to hear you say this...  Before I started treatment I was given a choice.  Either I started treatment and hoped like HELL it would work or I would be placed on the liver transplant list and probably die waiting for a liver.  I struggled my whole life about whether or not to sign the back of my drivers license and donate organs.  My Mom would put the kabosh on me donating organs if she outlived me.  I knew that.  She is of the old school thinking that everyone is reincarnated (not opposing that thought at all... but it gets crazy now...) and if you were to donate your eyes in this life, in your next life you'd come back blind.  Yep, she still believes that.  My struggle was with donating and I never even thought about being on the receiving end.  When someone tells you that you will die without a new liver...  that changes everything for you.  I know many people who have had liver transplants.  All of them because of hep c.  These are people who have been given a new chance at life.  Granted they have to take a bazillion medications daily to keep that liver from rejecting but they are living a wonderful life.  Never say never.  

Hugs,TeriOn Tue, Feb 22, 2011 at 12:17 PM, Cynde Moya <cyndemoya@...> wrote:

 



After I wrote of my disgust of liver transplants, and hit 'send,' I realized I might get some pushback from people on this board who have had a liver transplant.

 

Steve, it sounds like you had a positive experience with your transplant. I appreciate your sharing your experience and your good feelings about the outcome so far. Your feedback is much appreciated, and has caused me to pause and think some more.

 

Cynde

 

 

Reply to sender |

Reply to group |

Reply via web post |

Start a New Topic

Messages in this topic

(14)

Recent Activity:

New Members

8

New Links

44

Visit Your Group

[Guest guest]

I'm still rocked at how this Dr. reads an Ultra Sound and pronounces someone with alcoholic cirrhosis. You know, cirrhosis is cirrhosis and who can really tell the difference? What a wonderful way to get rid of you as a patient! Tells you that you have cirrhosis; but, nothing more about it? There are folks on another chat group that I check into now and then, who have grave liver disease and have never had a drinking problem or Hep C!!!

Oh this guy is a REAL gem!Transplant vs Donor... In order to get a transplant you need to be put on the "Transplant List" and there is criteria to get you there. There are also things that will keep you off the list.. such as drug use and alcoholism among other things... my bet.. this guy is assuming "alcoholic" and has already pre-determined that you won't fare well on the list. With a living donor, someone gives you a piece of their liver... someone alive and usually someone you know. If someone is wiling to give you part of your liver the hospital cannot deny it like they can a transplant...

I keep wondering if I could dislike this doctor more... then you give me more information and I do! Holy crap no wonder you are pissed off. We need to find you a Hepatologist close to you post haste!

Hugs,TeriOn Tue, Feb 22, 2011 at 8:25 AM, Colette Wise <scwise@...> wrote:

Here's an odd question relating to transplants. My Gastro told me it would not be a transplant situation but a donor situation. What the hell does that mean? I just remembered that! I had so many other things going thru my mind at the time, I just let that one go right on by.

Any thoughts?S. Colette Wise

From: gadamscan@...Date: Mon, 21 Feb 2011 18:47:10 -0800

Subject: Re: [ ] Re: Clinical Encounter Report

Oh SteveI am so sorry!!! My reasons for not wanting a transplant are absolutely mine, only. I truly do not have anything against them at all, it's just that I think at my age, I could just say pass and allow a younger person to live.

You are probably an example of what I mean!! I'll bet you are quite a number of years younger than I am. The getting sick and then being on a list, takes years and years - so, you would have been quite young.

Good on YouGloria

sorry for the delayed response to your post........however...You may one day decide to change your mind regarding a transplant as being "the most revolting, disgusting thing I could imagine." For me it was a godsend which I found to be a beautiful, lifesaving experience. There is nothing revolting or disgusting about a liver transplant.

be wellsteve

>> Hi > > Well I went to that new Doctor and asked him a bunch of questions. Like, Do you know the Standard of Care for HepC patients? That woke him up a bit. I got referrals for ultrasound, my last one was a year ago. And there’s a new hepatology clinic in town; so I got a referral to that. I’m in Seattle, BTW.

> > The other hepatologist, Maggie Shuhart, does a clinic every Thursday morning at the charity hospital, Harbor View. Now there is another one, at Swedish Hospital, in conjunction with their new Transplant Clinic. Since I’ve already talked to Shuhart and been to the Harbor View clinic, I decided to go see what this new hepatology clinic is all about.

> > There was recently a case here in Seattle where the hospital refused to give a liver transplant to a Medical Marijuana patient, because they consider Medical Marijuana users “drug addicts.†So I said to this new General Practitioner, well, that sounds nice over at Swedish, but they won’t give me a transplant because I use Medical Marijuana. But he told me that the new Swedish hepatologist had spoken to their clinic, and said that they are no longer absolutely refusing transplants to MM users.

> > Not that I want a transplant; it’s about the most revolting, disgusting thing I could imagine. But the body has this way of wanting to live, and who knows what I would decide when the time comes. >

> I want to thank, I think it was Teri, who recommended I go into these doctor visits with the attitude that I have my sick baby, my liver, and I have to take charge and press for answers. It worked for me, and I felt more grown up than I have . . . well, ever.

> > Cynde>

[Guest guest]

Hi Gloria

This is a private email.

It is ok to mention other groups, and provide the link to them, 'on forum' if you like.

I figure it is our job to help people find info where-ever it is.

If it is in another group - so be it.

I refer people to the Transplant and Liver Cirrhosis groups often.

Even to other HCV groups, or Alternative treatment groups.

I list them in the LINKS LIBRARY too.

I am a member of them all, and that helps me find the info that I need.

I feel everyone should have the same right to info, so please feel free if you like.

love

don in ks

Here's an odd question relating to transplants. My Gastro told me it would not be a transplant situation but a donor situation. What the hell does that mean? I just remembered that! I had so many other things going thru my mind at the time, I just let that one go right on by. Any thoughts?S. Colette Wise

From: gadamscan@...Date: Mon, 21 Feb 2011 18:47:10 -0800Subject: Re: [ ] Re: Clinical Encounter Report

Oh SteveI am so sorry!!! My reasons for not wanting a transplant are absolutely mine, only. I truly do not have anything against them at all, it's just that I think at my age, I could just say pass and allow a younger person to live.You are probably an example of what I mean!! I'll bet you are quite a number of years younger than I am. The getting sick and then being on a list, takes years and years - so, you would have been quite young. Good on YouGloria

sorry for the delayed response to your post........however...You may one day decide to change your mind regarding a transplant as being "the most revolting, disgusting thing I could imagine." For me it was a godsend which I found to be a beautiful, lifesaving experience. There is nothing revolting or disgusting about a liver transplant.be wellsteve>> Hi > > Well I went to that new Doctor and asked him a bunch of questions. Like, Do you know the Standard of Care for HepC patients? That woke him up a bit. I got referrals for ultrasound, my last one was a year ago. And there’s

a new hepatology clinic in town; so I got a referral to that. I’m in Seattle, BTW. > > The other hepatologist, Maggie Shuhart, does a clinic every Thursday morning at the charity hospital, Harbor View. Now there is another one, at Swedish Hospital, in conjunction with their new Transplant Clinic. Since I’ve already talked to Shuhart and been to the Harbor View clinic, I decided to go see what this new hepatology clinic is all about. > > There was recently a case here in Seattle where the hospital refused to give a liver transplant to a Medical Marijuana patient, because they consider Medical Marijuana users “drug addicts.†So I said to this new General Practitioner, well, that sounds nice over at Swedish, but they won’t give me a transplant because I use Medical Marijuana. But he told me that the new Swedish hepatologist had spoken to their clinic, and said that they are no longer absolutely refusing transplants to

MM users. > > Not that I want a transplant; it’s about the most revolting, disgusting thing I could imagine. But the body has this way of wanting to live, and who knows what I would decide when the time comes. > > I want to thank, I think it was Teri, who recommended I go into these doctor visits with the attitude that I have my sick baby, my liver, and I have to take charge and press for answers. It worked for me, and I felt more grown up than I have . . . well, ever. > > Cynde>