Re: Frustration

[Guest guest]

I like your attitude, Mike! There's always hope!

Blessings to you, too--

Theresa

Frustration

> Hey again all,

>

> This is a wonderful group and I truley enjoy all of the support and

> information that comes along. It's a great bunch of folks out here

> putting a lot into helping others.

>

> My frustration comes from several angles. I've been diagnosed with

> CFS and the ole Fibro fun. As noted in earlier posts, there is still

> a tremendous amount of lack of treatment and respect in the MD

> industry at this time.

[Guest guest]

I like your attitude, Mike! There's always hope!

Blessings to you, too--

Theresa

Frustration

> Hey again all,

>

> This is a wonderful group and I truley enjoy all of the support and

> information that comes along. It's a great bunch of folks out here

> putting a lot into helping others.

>

> My frustration comes from several angles. I've been diagnosed with

> CFS and the ole Fibro fun. As noted in earlier posts, there is still

> a tremendous amount of lack of treatment and respect in the MD

> industry at this time.

[Guest guest]

Thank you, Tania, for all the good tips--especially the ones on travel. I

have a trip coming up and was dreading it, but now I can follow your advice.

Thanks, too, for all the work you're doing for all of us!

Blessings,

Theresa

Re: Frustration

> Hi,

> Like you, I have been living with this for 12 years now. I have had

> various surgeries for different reasons, but I made sure I went to a big

> city hospital where they could deal with the complications from

> " Fibro/CFS " .

[Guest guest]

Thanks Mike I agree with you totally, today I am running on empty.

God Bless,

support group leader

Chester

[Guest guest]

Hi Theresa,

I'm so glad that you found the tips worthwhile. Just don't forget a pillow for

your tush and one for your back on the plane. It will make the ride much more

comfortable. If you have neck problems like I do(I had C5,6,7)operated on years

ago and it is fine, but with the fibro issues I choose to put on a soft neck

collar when we take off and land. This prevents jarring and the neck/shoulder

muscles getting tight because it is protected by the collar as you take off and

land.

When are you taking your trip, on which airline and to where if you don't mind

my asking. Just make sure when making your reservations to let them know you

will need(not want) wheelchair service. This way it should be in the computer

when you get there. If you get into the wheelchair as soon as you get into the

airport you can check in at the business or first class section. That is part of

the policy when traveling in wheelchair.

God bless,

Tania

Theresa Schroeder wrote:

Thank you, Tania, for all the good tips--especially the ones on travel. I

have a trip coming up and was dreading it, but now I can follow your advice.

Thanks, too, for all the work you're doing for all of us!

Blessings,

Theresa

Re: Frustration

> Hi,

> Like you, I have been living with this for 12 years now. I have had

> various surgeries for different reasons, but I made sure I went to a big

> city hospital where they could deal with the complications from

> " Fibro/CFS " .

[Guest guest]

I understand all your frustrations, but I have learned over the years that if I

am going to get the help I need, I will tell the doctor what I need and what I

expect. This way I am educating him while getting what I need in the process. If

the doctor does not want to go along with it, LEAVE and keep trying until you

find one who will.

No one knows your body like you do and we have to advocate for ourselves if they

are going to learn.

Once I lay things out on the table I have found I have earned the respect of the

doctors because I am not expecting them to perform miracles that aren't there,

but I do expect them to work with me and they have all done so over these past

12 years since being diagnosed.

Don't give up, just sit up and make sure you get noticed and the necessary help

you need. You will feel more empowered once you have set your boundary.

Tania

Theresa Schroeder wrote:

I like your attitude, Mike! There's always hope!

Blessings to you, too--

Theresa

Frustration

> Hey again all,

>

> This is a wonderful group and I truley enjoy all of the support and

> information that comes along. It's a great bunch of folks out here

> putting a lot into helping others.

>

> My frustration comes from several angles. I've been diagnosed with

> CFS and the ole Fibro fun. As noted in earlier posts, there is still

> a tremendous amount of lack of treatment and respect in the MD

> industry at this time.

[Guest guest]

Hi Rick

Well it sounds like you've been pulled through the wringer,, backwards hon!! 3 mm is enough to make them NOT list you? What do they think will happen if they dont list you? Dont they realize the the cancer will come back again? I'm going to forward this email to my Dr. friend,, Dr. Darling who has had 3 liver transplants and get his take on it.. he might have some helpful info,, maybe not but it can't hurt to try..

Dont give up and keep on insisting that they list you! IF that 3 mm was going to keep you off the tp list, why did they put you through all those awful tests to begin with? BS I say!!! lol

Ill let ya know what Dr. Darling has to say if he has anything,, but just know that we're all keeping you in our prayers,,

hugs

jaxJackie

Subject: FrustrationTo: Hepatitis_C_Central Date: Thursday, August 28, 2008, 5:03 PM

Well, I'm still in Tampa and have completed all the myriad tests required. The "Committe" met yesterday, without a decision! They have 2 problems with giving me the o.k., both due to UNOS regulations, which no hospital wants to break and get caught. 1) My bilirubin suddenly has dropped into the normal range, thereby lowering my MELD score to 8. It's been consistently between 10 and 18 for the past 4 years. No one has a clue as to why. 2) The malignant tumor on my liver was discovered by ultrasound and measured 2 cm. Then the first CT scan said 1.5, and a second CT scan 1.7. Those were 5 to 7 weeks ago. When I had the chemoembolization (radiation shot right into the tumor), the Doctor said it was 2.2 cm. The "committee" is somehow set on using the 1.5 or 1.7 for a number, which is too low for a transplant. 2.0 is o.k., so I'm off 3mm from their criteria. Today I had my last test, blood work and

a meeting with one of the transplant surgeons here. and I were damned ready, and armed! We had called my Dr. in Fort Myers this a.m., and he said, "B.S., fight like hell over this." He's also faxing another letter with his views. He told recently that regardless of numbers, I am sicker than they indicate, and he's very concerned about my mortality. Anyways, in the Dr's meeting today, things went better. He had no explanation for the MELD score. I explained my HCV history since 1992, the 3 tx's, never svr, that I've been diagnosed with ESLD, cirrohsis, cancer and sever gastric varices (which are caused by the HCV/Liver). He had no record of the varices (treated twice in the hospital in the past 6 weeks, once reaching a coma and a bp or 46/34. This is when he became more concerned. So he's trying to find some test where the tumor was 2cm, and is going to discuss my case with his

collegues. Then there's another meeting next Tuesday, at which they'll re-open my case. The Dr. said that he is my advocate, not my enemy, and that a 3mm difference in measurement is pretty insignificant. I think he's trying to come up with something for any UNOS review so that the Hospital doesn't get investigated. Funny news here: UCLA performed a transplant on a Japanese businessman within the past year. His numbers were marginal, and 6 weeks after surgery, the man gave UCLA a $100,000 donation! UNOS is pissed (don't know if on or off!). Tomorrow we go to a one hour class on liver tp's, and that's it for the weekend. We should get a phone call next Tuesday p.m. or Wednesday with their thoughts. This whole thing has been nerve racking, with some of the tests being unpleasant, if not downright nasty and painful. That's all over, and now we again wait. Boy, talk about wanting a coctail now! LOL.

Rick

[Guest guest]

ps.. no drinking,, lolJackie

Subject: FrustrationTo: Hepatitis_C_Central Date: Thursday, August 28, 2008, 5:03 PM

Well, I'm still in Tampa and have completed all the myriad tests required. The "Committe" met yesterday, without a decision! They have 2 problems with giving me the o.k., both due to UNOS regulations, which no hospital wants to break and get caught. 1) My bilirubin suddenly has dropped into the normal range, thereby lowering my MELD score to 8. It's been consistently between 10 and 18 for the past 4 years. No one has a clue as to why. 2) The malignant tumor on my liver was discovered by ultrasound and measured 2 cm. Then the first CT scan said 1.5, and a second CT scan 1.7. Those were 5 to 7 weeks ago. When I had the chemoembolization (radiation shot right into the tumor), the Doctor said it was 2.2 cm. The "committee" is somehow set on using the 1.5 or 1.7 for a number, which is too low for a transplant. 2.0 is o.k., so I'm off 3mm from their criteria. Today I had my last test, blood work and

a meeting with one of the transplant surgeons here. and I were damned ready, and armed! We had called my Dr. in Fort Myers this a.m., and he said, "B.S., fight like hell over this." He's also faxing another letter with his views. He told recently that regardless of numbers, I am sicker than they indicate, and he's very concerned about my mortality. Anyways, in the Dr's meeting today, things went better. He had no explanation for the MELD score. I explained my HCV history since 1992, the 3 tx's, never svr, that I've been diagnosed with ESLD, cirrohsis, cancer and sever gastric varices (which are caused by the HCV/Liver). He had no record of the varices (treated twice in the hospital in the past 6 weeks, once reaching a coma and a bp or 46/34. This is when he became more concerned. So he's trying to find some test where the tumor was 2cm, and is going to discuss my case with his

collegues. Then there's another meeting next Tuesday, at which they'll re-open my case. The Dr. said that he is my advocate, not my enemy, and that a 3mm difference in measurement is pretty insignificant. I think he's trying to come up with something for any UNOS review so that the Hospital doesn't get investigated. Funny news here: UCLA performed a transplant on a Japanese businessman within the past year. His numbers were marginal, and 6 weeks after surgery, the man gave UCLA a $100,000 donation! UNOS is pissed (don't know if on or off!). Tomorrow we go to a one hour class on liver tp's, and that's it for the weekend. We should get a phone call next Tuesday p.m. or Wednesday with their thoughts. This whole thing has been nerve racking, with some of the tests being unpleasant, if not downright nasty and painful. That's all over, and now we again wait. Boy, talk about wanting a coctail now! LOL.

Rick

[Guest guest]

Rick and ,

This sucks major swamp water, but no time to give up,

hang on tighter and give them what for..

Sometimes it gets real gloomy before we see another

ray of sunshine. My prayers remain with you both,

know this has to be a tough one..

Love You Guys,

Sheena

Well, I'm still in Tampa and have completed all the myriad tests required. The "Committe" met yesterday, without a decision! They have 2 problems with giving me the o.k., both due to UNOS regulations, which no hospital wants to break and get caught. 1) My bilirubin suddenly has dropped into the normal range, thereby lowering my MELD score to 8. It's been consistently between 10 and 18 for the past 4 years. No one has a clue as to why. 2) The malignant tumor on my liver was discovered by ultrasound and measured 2 cm. Then the first CT scan said 1.5, and a second CT scan 1.7. Those were 5 to 7 weeks ago. When I had the chemoembolization (radiation shot right into the tumor), the Doctor said it was 2.2 cm. The "committee" is somehow set on using the 1.5 or 1.7 for a number, which is too low for a transplant. 2.0 is o.k., so I'm off 3mm from their criteria. Today I had my last test, blood work and

a meeting with one of the transplant surgeons here. and I were damned ready, and armed! We had called my Dr. in Fort Myers this a.m., and he said, "B.S., fight like hell over this." He's also faxing another letter with his views. He told recently that regardless of numbers, I am sicker than they indicate, and he's very concerned about my mortality. Anyways, in the Dr's meeting today, things went better. He had no explanation for the MELD score. I explained my HCV history since 1992, the 3 tx's, never svr, that I've been diagnosed with ESLD, cirrohsis, cancer and sever gastric varices (which are caused by the HCV/Liver). He had no record of the varices (treated twice in the hospital in the past 6 weeks, once reaching a coma and a bp or 46/34. This is when he became more concerned. So he's trying to find some test where the tumor was 2cm, and is going to discuss my case with his

collegues. Then there's another meeting next Tuesday, at which they'll re-open my case. The Dr. said that he is my advocate, not my enemy, and that a 3mm difference in measurement is pretty insignificant. I think he's trying to come up with something for any UNOS review so that the Hospital doesn't get investigated. Funny news here: UCLA performed a transplant on a Japanese businessman within the past year. His numbers were marginal, and 6 weeks after surgery, the man gave UCLA a $100,000 donation! UNOS is pissed (don't know if on or off!). Tomorrow we go to a one hour class on liver tp's, and that's it for the weekend. We should get a phone call next Tuesday p.m. or Wednesday with their thoughts. This whole thing has been nerve racking, with some of the tests being unpleasant, if not downright nasty and painful. That's all over, and now we again wait. Boy, talk about wanting a coctail now! LOL.

Rick

[Guest guest]

Oh Rick I am sorry to hear that you are having so many problems with them. Do as your Dr. back home says. Fight like hell.

I am keeping you in my thoughts and prayers hon.

Love

Janet

"There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go"

Frederick Faber

Subject: FrustrationTo: Hepatitis_C_Central Date: Thursday, August 28, 2008, 7:03 PM

Well, I'm still in Tampa and have completed all the myriad tests required. The "Committe" met yesterday, without a decision! They have 2 problems with giving me the o.k., both due to UNOS regulations, which no hospital wants to break and get caught. 1) My bilirubin suddenly has dropped into the normal range, thereby lowering my MELD score to 8. It's been consistently between 10 and 18 for the past 4 years. No one has a clue as to why. 2) The malignant tumor on my liver was discovered by ultrasound and measured 2 cm. Then the first CT scan said 1.5, and a second CT scan 1.7. Those were 5 to 7 weeks ago. When I had the chemoembolization (radiation shot right into the tumor), the Doctor said it was 2.2 cm. The "committee" is somehow set on using the 1.5 or 1.7 for a number, which is too low for a transplant. 2.0 is o.k., so I'm off 3mm from their criteria. Today I had my last test, blood work and

a meeting with one of the transplant surgeons here. and I were damned ready, and armed! We had called my Dr. in Fort Myers this a.m., and he said, "B.S., fight like hell over this." He's also faxing another letter with his views. He told recently that regardless of numbers, I am sicker than they indicate, and he's very concerned about my mortality. Anyways, in the Dr's meeting today, things went better. He had no explanation for the MELD score. I explained my HCV history since 1992, the 3 tx's, never svr, that I've been diagnosed with ESLD, cirrohsis, cancer and sever gastric varices (which are caused by the HCV/Liver). He had no record of the varices (treated twice in the hospital in the past 6 weeks, once reaching a coma and a bp or 46/34. This is when he became more concerned. So he's trying to find some test where the tumor was 2cm, and is going to discuss my case with his

collegues. Then there's another meeting next Tuesday, at which they'll re-open my case. The Dr. said that he is my advocate, not my enemy, and that a 3mm difference in measurement is pretty insignificant. I think he's trying to come up with something for any UNOS review so that the Hospital doesn't get investigated. Funny news here: UCLA performed a transplant on a Japanese businessman within the past year. His numbers were marginal, and 6 weeks after surgery, the man gave UCLA a $100,000 donation! UNOS is pissed (don't know if on or off!). Tomorrow we go to a one hour class on liver tp's, and that's it for the weekend. We should get a phone call next Tuesday p.m. or Wednesday with their thoughts. This whole thing has been nerve racking, with some of the tests being unpleasant, if not downright nasty and painful. That's all over, and now we again wait. Boy, talk about wanting a coctail now! LOL.

Rick