Donna

[Guest guest]

Donna,

welcome to the group. I am sorry to hear that you have been placed on the transplant list. There are a few others in the group that are on the transplant list, I think. There are also some who have had a transplant.

I was diagnosed with AIH on Jan 6, 03. My liver biopsy showed stage 3 fibrosis but it seems to have responded well to prednisone. After only 2 1/2 weeks on 20 mg of prednisone a day my AST/ALT were normal or near normal. They have been weaning me down on the prednisone. I'm taking 12.5 mg daily now but will go down to 10 mg on Saturday and then stay at that dose for a while.

Take care,

W

[Guest guest]

Donna....I was transplanted Oct. 19, 1995

due to end stage cirrhosis....I'd be glad to help you if I can.

First of all don't let fear and worry eat you up...the procedure is

getting better every day and the prognosis is very good post-transplant.

Worrying about future events acomplishes nothing as you have no control

over them.

There are a few more here that have had transplants also and I'm sure

will respond.

Welcome!

love jerry

(Jerry Fox Akron , Oh.)

[Guest guest]

Dear Donna,

I'm so glad you found us. There are great folks in our AIH family who can help get you through just about anything with information, laughter and tears. I'm sorry you have to go through this.

I am also on the transplant list but staying pretty stable since I was listed last year so I am expecting a lllloooonnnngggg wait especially because I also have O+ blood. Lucky me.

What led you to be put on the transplant list? It sounds like you may have been hit pretty hard right away.

Take care,

Amy

[Guest guest]

hi, welcome to the family, you will get lots os information, support, friendship and love from this group. any questions, just ask. someone will know the answer.

love and hugs

anita

(england)

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

,

I'm coming to Boston tomorrow because my daughter is graduating from

Northeastern University on Friday morning! NO DOCTORS - just

pleasure.

Donna

>

> Hi Donna,

> Why are you coming to Boston? to see a doc?

>

>

> Quality Assurance Manager-Cadra Product

>

> SofTech, Inc.

> 59 Composite Way, Suite 401

> Lowell, MA 01851

>

> 978-513-2650 call

> 978-458-4096 fax

> http://www.softech.com/products/cad.php

>

[Guest guest]

Congrats Donna,

Shoe independence is a huge milestone. Congrats! LOL C

[Guest guest]

Donna,

As others jumped in, I think that University of California in San Franciso is

where I would start searching for a doctor on the west coast. Dr Hu is the

surgeon, I believe, that has the longest track record in our membership...not

that that is any indication of anything....but you could use the search feature

and go backward in time to learn more about her and others experiences with her.

Jodi has just given her surgeons information in Las Vegas and he is there in

your area. I always suggest that one place to start looking for qualified

surgeons is from utilizing the " physician locator " on the Scoliosis Research

Society's website. Membership in this Society requires that the doctor devote a

significant portion of their practice to adult deformity. While that may not

guarantee any specialized skill in dealing with flatback, it helps you determine

that the doctor you are seeing should understand what " state of the art " means

for us old Harrington rod scolis...and what is possible. Jodi's surgeon,

DrMcNulty is a member of the Society and appears to be the only member in Nevada

who deals with the adult population. Here is a link to his web information:

http://www.nevadaorthopedic.com/our_physicians/bio4.php

It is possible that your current neurosurgeon might be willing to work in

concert with another orthopedic surgeon. I am not a medical person, but I have

read cautionary information indicating that for us tricky patients with this

long fusion, a decompression surgery (laminectomy) can actually make it very

difficult to get a stable spine later when a patient is also addressing

flatback. This can lead to more pain and imbalance. Therefore it is critical

that you make sure that your neuro understands what your situation is. I would

suggest that it would be a good idea to make sure has a good number of these

surgeries under his belt...not just observed one or two....

I did a quick look up on Southwest Airlines. You can fly direct to either

StLouis (DrBridwell) in under 3 hours, or SF in under 2 hours, in either case

for less than $300. Consulting one of these doctors in person will be invaluable

to helping you get clarity on what you can realistically expect. Whatever you

were told on the phone by the nurse at DrBridwells office sounds like a range of

experience was given in terms of time frames for recovery after surgery. If you

use the search feature on our site you can sort through who has had surgery in

StLouis and how they feel their experience and outcome have been. If you want to

be encouraged more...go to the Photo section and take a look at " SB " 's album.

She traveled from Oklahoma City, but I think you will agree that it was worth

the effort for her.

To answer your specific questions, my revision surgery was in Boston with

DrRand. I had two days of surgery, which were done one week apart. I travelled 2

hours to Boston to have this surgery and other than friends I had made in this

web group and my husband being there for 24 hours after each surgery...I was

essentially alone.

I did not have any neurological symptoms as you have described, other that a

searing white hot pain whenever I stood, walked or moved. For me, the onset of

this was fairly sudden and I went from being active and highly functioning to

couch-ridden in less than a year. I did manage to work up until my surgery.

Following surgery I was out of work for 12 weeks on sick leave. I was able to go

back to my occupation then, part time at first, and a month later to a full time

position. My job did not require any bending lifting or twisting....big

" no-no's " in the early healing.

Not everyone ends up as fortunate as me following surgery, as it goes without

saying that we are each unique individuals with unique medical histories. As

says however, giving up before you begin is no way to start this journey.

Believing that there may be help for you is important. In an non scientific poll

of our membership, once a member is about 12-18 months post op the tendency is

for the member to feel that whatever state of function or pain they have, they

consider themselves better off and glad to have had the surgery. But don't take

my word for that....you should go through the process of reading old posts and

asking lots of questions of those of us who have gone through this.

If you do not feel that your needs can be met staying close to your current

home, traveling to another doctor may be the thing that actually gets yuo back

to good functionality in the shortest period of time. Staying local may work for

you, but since I always beg people to get at least 2 excellent opinons before

embarking on surgery....and DrMcnulty seems to be the only " adult scoli " guy in

Vegas...try to think in terms of seeing Bridwell or Hu if you can. It will calm

you mind no matter what you decide if you can rely on the fact that you have

seen one of the top surgeons in this country/world for our particular problems.

Don't let geography be a road block.

If I understood you correctly, your ex-husband may be willing to take your

poochie for a period of time while you are not able to care for him. Excellent.

If the care is already more than you can safely do with your walker perhaps you

should make arrangements to transfer him sooner, rather than later. It will be

one thing off your " To Do " list, even though I know you will miss him.

I hope you were able to get to the doctor today and that things are a little

better for you. We all know how hard this is to go through...but try to hang in

there. Small steps.

Take Care, Cam

[Guest guest]

Lleweyn

exactly, im in lots of pain but its not am emergency cause i can make it to the store have a walker and my pain dr has helped . He knows of my losses and knows i wont be rsuhed into any surgey like this when i have NO support group other than by puter.

So my ex husbands mom in VA surprised and bought me a shitsu to give me company that is being delivered from ID its a bitter sweet, no dog can take her place and im not sure i want antoher dog so fast, . My ex will take it if i cant deal with it.

i didnt know till the day before she died , that she was sick, my sisters i had a couple wks notice

Donna

From: mad.monk@...Date: Tue, 21 Jul 2009 13:19:05 -0700Subject: RE: [ ] donna

Donna,

Please accept my sympathy for all that has happened this month. Unless you are in an emergency situation for surgery, then you need the time to grieve and get yourself ready both physically and emotionally for any surgery. I hope you have some good friends nearby to help you and that you can talk to, when you are ready. If not, you have listening ears here. Please take care of yourself.

Llweyn

my life just became very difficult i just lost 2 sisters to cancer in 6 mos one was gonna take care of me after surgery, i had talke with bernie way before they died. i now have no after care person to help me out , i haveto wiat for social security my insur wont handle nurses. Im very depressed since im all alone so i have put surgery off , the hardest about this wll is im alone now too cause beloved dog of 13 yrs died july 1st of bladder cancer jsut as my sisters had. Very odd and i m not in a place emotionally to talk more about my situatin thank you thoughDonna

..

[Guest guest]

Diane VDW MI

i am a chrisitan but the work schedule i had my whole work career in timeshare i worked all wkdns , holdiays for 10 yrs and moved from my home church in VA to Vegas for job transfer a few months ago cause no pain dr or ortho dr would touch me and never saw my condirion before its a small town.

you and a niece suggested i connect with a church in town and talk with a pastor or asst and let them knwo the situtation thats what the body of christ is for is to help i agree. A great suggestion thank you. As VAlerie mentioned once my long term dis is settled then ill know what budget im on etc ill haveto pay 1000 a mo for my cobra that i do know so its tight. I get 1200 a mo before taxea now on the 6 mo wiat on short term dis so imm going thru savings plus helped pay for 2 funerals. I have left it all in Gods hands cause that my source no one else

thank you so much

Donna

310-595-6462

From: sdvdw@...Date: Tue, 21 Jul 2009 16:28:02 -0500Subject: Re: [ ] donna

Dear Donna,

You have my sympathy, honey. What a hard time you are facing. Losing 2 sisters and a beloved pet. And all the while you are facing physical difficulty and pain. I am so sorry.

You may have mentioned it before, but are you a person of faith? The reason I ask, is that many churches can be very supportive if you were to share your needs. You might not be able to find just one person to help with aftercare, but perhaps you could line up a "team," so to speak, who would be willing to take turns helping you during those most difficult first weeks. I can not imagine having no family to help me out, but I do know that in the churches I've been a part of, there has always been help offered. (I know of a gal around here who had sextuplets who received all kinds of help from people. They had a schedule with a couple of people to help every day.)

Perhaps this isn't a viable solution for you, but I thought I'd throw it out there as something to consider.

I wish you all the best.

Diane VDW

Michigan

Cmy life just became very difficult i just lost 2 sisters to cancer in 6 mos one was gonna take care of me after surgery, i had talke with bernie way before they died. i now have no after care person to help me out , i haveto wiat for social security my insur wont handle nurses. Im very depressed since im all alone so i have put surgery off , the hardest about this wll is im alone now too cause beloved dog of 13 yrs died july 1st of bladder cancer jsut as my sisters had. Very odd and i m not in a place emotionally to talk more about my situatin thank you though

Donna

310-595-6462____________________________________________________________ Click now to get the general liability insurance you need to protect yourself!

[Guest guest]

Donna,

I am very sorry for your losses. It must be very hard. Maybe getting yourself

back into church is the right thing to do. Mourning can be very hard on top of

your physical issues, maybe some fellowship can help. C

[Guest guest]

Donna, I am very sorry for all you are going through.  A few years ago I had two close relatives also pass the same week.  Not easy!  You are very much in my prayers and thoughts.Debbie

On Wed, Jul 22, 2009 at 8:56 AM, redmarmie <vclark@...> wrote:

 

Donna,

I am very sorry for your losses. It must be very hard. Maybe getting yourself back into church is the right thing to do. Mourning can be very hard on top of your physical issues, maybe some fellowship can help. C

[Guest guest]

linda g

thank u for your love and prayers

donna

Donna

310-595-6462

From: lgross1@...Date: Tue, 21 Jul 2009 18:25:27 -0400Subject: Re: [ ] donna

Donna, like everyone else has said, you have my sympathy as well. That is a lot of loss in such of a short period of time. My heart goes out to you. Please know that you have friends here, as you have seen from all of the responses from so many, even before your loss of your loved ones. It is written that God does not give you more than you can handle, and sometimes I have almost questioned that, but I do believe it, based on personal experiences. You received a full plate in a very short span of time, and sometimes all we have to hang onto is faith itself, but that is what it is for and I hope it will help carry you through this, and know it will since you turned it over to God's hands.

If I had the resources I would get a plane ticket to stay with you for a few days. Please know that you do have sincere friends here that care and in this virtual place you are not alone.

G

Re: [ ] donna

Dear Donna,

You have my sympathy, honey. What a hard time you are facing. Losing 2 sisters and a beloved pet. And all the while you are facing physical difficulty and pain. I am so sorry.

You may have mentioned it before, but are you a person of faith? The reason I ask, is that many churches can be very supportive if you were to share your needs. You might not be able to find just one person to help with aftercare, but perhaps you could line up a "team," so to speak, who would be willing to take turns helping you during those most difficult first weeks. I can not imagine having no family to help me out, but I do know that in the churches I've been a part of, there has always been help offered. (I know of a gal around here who had sextuplets who received all kinds of help from people. They had a schedule with a couple of people to help every day.)

Perhaps this isn't a viable solution for you, but I thought I'd throw it out there as something to consider.

I wish you all the best.

Diane VDW

Michigan

Cmy life just became very difficult i just lost 2 sisters to cancer in 6 mos one was gonna take care of me after surgery, i had talke with bernie way before they died. i now have no after care person to help me out , i haveto wiat for social security my insur wont handle nurses. Im very depressed since im all alone so i have put surgery off , the hardest about this wll is im alone now too cause beloved dog of 13 yrs died july 1st of bladder cancer jsut as my sisters had. Very odd and i m not in a place emotionally to talk more about my situatin thank you though

Donna

310-595-6462____________________________________________________________ Click now to get the general liability insurance you need to protect yourself!

[Guest guest]

Llewyn, Cam , pEGGY and

what do i say to the pain drs and surgeon he wokrs with when im shceduled end of aug to meet him as to the reason that yes i want to and need the surgey obvioulsy BUT need to put it off until i can see my mom i havent seen in 5 yrs that has dementia dn now heart failure i need to do these things say hellos goodbyes to prepare if anything happens.

I need to find a support person that can come to me cross cntry and help out at least for a month. My condition is worsening and now that they are lookign for MS and fibromyalgia its diff than when i was confirmed as long term disabled in 07.

i know its obvious they said when i walked in there in 07 that needed surgery , they agree by all the letters and fmla and short term paper they do every 2 wks like troopers BUT BUT i read the postings and I MUST have a person of support to help me even if it just 2 wks to help me get a routine and figure out and help me take walks i live on rough terrain.

What are your and any one else's like Peggy or G opinion and Cam.thanks and godbless im goin to church this sunday thanks

Donna

310-595-6462

From: mad.monk@...Date: Tue, 21 Jul 2009 13:19:05 -0700Subject: RE: [ ] donna

Donna,

Please accept my sympathy for all that has happened this month. Unless you are in an emergency situation for surgery, then you need the time to grieve and get yourself ready both physically and emotionally for any surgery. I hope you have some good friends nearby to help you and that you can talk to, when you are ready. If not, you have listening ears here. Please take care of yourself.

Llweyn

my life just became very difficult i just lost 2 sisters to cancer in 6 mos one was gonna take care of me after surgery, i had talke with bernie way before they died. i now have no after care person to help me out , i haveto wiat for social security my insur wont handle nurses. Im very depressed since im all alone so i have put surgery off , the hardest about this wll is im alone now too cause beloved dog of 13 yrs died july 1st of bladder cancer jsut as my sisters had. Very odd and i m not in a place emotionally to talk more about my situatin thank you thoughDonna

..

[Guest guest]

Not to keep this going on and on, as it's definitely not necessary. I understand people may not choose their words wisely and/or had a bad day, etc., just as you say MY words are incorrect to you. I only said this because I've seen this off and on a few times on here, as well as when I had spoken about a particular doctor that I had for many years that botched me up and made me disabled that I felt was not someone others should go to (IN MY OPINION) and I was *attacked* so to speak when I did. Like I said, many of us do not JUST have flatback in our medical history, like myself that has had brain damage as well from my particular doctor and therefore words are not as easily put as others are freely able to do. There might be reasons why someone might not type as perfect or put words together as well as others and for many of us coming on the computer is our only source of communicating, however perfect or not. Just as some don't have a problem with letting another person know how they feel, as was the post I was commenting about, I chose to put MY post out there as well and my feelings in regards to a particular post, however didn't choose to point the finger in just ONE person's direction...just a general comment to the group instead. I am not out to attack anyone or keep this going...it was just basically saying *hey*, maybe we should just send something to a particular person instead of the entire group (not be harsh) if they have a problem with them or what they have said. After all, this is a group that should be there for each other (no matter if they are new to the group or long-time members), whether you agree with what they say or not, and realize we all have *problems* so-to-speak and this is not the place to go and worry about how someone spells or puts their words together.

As for choosing your words carefully so you *don't want to have to eat them later*, why should any of us have to? We aren't in court or writing a book or newspaper article. We should be able to be ourselves, but also not embarrass someone in the process. That is just my two cents. An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps!

[Guest guest]

well put MWolfe

as for "i shoudt have mt computer glued down" its becasue i live in a tiny old Vegas apt and one outlet is across for the cable/tv across from sofa,

onlt other outlet is in dining area near kitchen so i dont own this place

and am not aloowed to run nailed cords across thd floor that far, so they have my laptap on end table next where i sit and the cords and all are taped across floor so i dont trip with my walker. This is handicap unit they didnt have any avail. Its too far t nailed borders with the cords from dinign to me at couch. I dont have a dining tabe either so i just live and sleep sitting in my recliner sofa casue back now hurts to lay in bed

sorry

my laptop is old and over 11 pounds so i cant life it, i must sit half twisting on counch to reply eetc so i kept knocking puter off table and they used clear crafters gel to hold in in place. I have to work w what i have.

By the time i write notes my back is hurting from hangin on to end of sofa under my arm so i dotn have to twist in place to face it

see thats the reason i haveo t twist not cause im not aware it is bad

donna

Donna

310-595-6462

From: mwolfe34@...Date: Sat, 25 Jul 2009 01:24:59 -0400Subject: Re: [ ] Donna

Not to keep this going on and on, as it's definitely not necessary. I understand people may not choose their words wisely and/or had a bad day, etc., just as you say MY words are incorrect to you. I only said this because I've seen this off and on a few times on here, as well as when I had spoken about a particular doctor that I had for many years that botched me up and made me disabled that I felt was not someone others should go to (IN MY OPINION) and I was *attacked* so to speak when I did. Like I said, many of us do not JUST have flatback in our medical history, like myself that has had brain damage as well from my particular doctor and therefore words are not as easily put as others are freely able to do. There might be reasons why someone might not type as perfect or put words together as well as others and for many of us coming on the computer is our only source of communicating, however perfect or not. Just as some don't have a problem with letting another person know how they feel, as was the post I was commenting about, I chose to put MY post out there as well and my feelings in regards to a particular post, however didn't choose to point the finger in just ONE person's direction...just a general comment to the group instead. I am not out to attack anyone or keep this going...it was just basically saying *hey*, maybe we should just send something to a particular person instead of the entire group (not be harsh) if they have a problem with them or what they have said. After all, this is a group that should be there for each other (no matter if they are new to the group or long-time members), whether you agree with what they say or not, and realize we all have *problems* so-to-speak and this is not the place to go and worry about how someone spells or puts their words together.

As for choosing your words carefully so you *don't want to have to eat them later*, why should any of us have to? We aren't in court or writing a book or newspaper article. We should be able to be ourselves, but also not embarrass someone in the process. That is just my two cents.

An Excellent Credit Score is 750. See Yours in Just 2 Easy Steps!

[Guest guest]

Donna,

Is there a way to get one of those hospital bed tables, or something along that line, that could swing over your chair? I'm sure that you might find one in a thrift shop or if you let it be known of your situation that something might come along that would better suit your needs. I understand having to sleep in the recliner, as I'm in that situation, too, though occasionally I'm in a better situation to sleep in my bed with a thick memory foam topper.

Besides the scoliosis, do you have other health issues that you have to deal with? Just wondering.

Llweyn

From: [mailto: ] On Behalf Of Donna Sent: July 25, 2009 2:41 AM Subject: RE: [ ] Donna

well put MWolfeas for "i shoudt have mt computer glued down" its becasue i live in a tiny old Vegas apt and one outlet is across for the cable/tv across from sofa, onlt other outlet is in dining area near kitchen so i dont own this placeand am not aloowed to run nailed cords across thd floor that far, so they have my laptap on end table next where i sit and the cords and all are taped across floor so i dont trip with my walker. This is handicap unit they didnt have any avail. Its too far t nailed borders with the cords from dinign to me at couch. I dont have a dining tabe either so i just live and sleep sitting in my recliner sofa casue back now hurts to lay in bedsorry my laptop is old and over 11 pounds so i cant life it, i must sit half twisting on counch to reply eetc so i kept knocking puter off table and they used clear crafters gel to hold in in place. I have to work w what i have.By the time i write notes my back is hurting from hangin on to end of sofa under my arm so i dotn have to twist in place to face it see thats the reason i haveo t twist not cause im not aware it is baddonna

Donna

310-595-6462

[Guest guest]

ill check into that desk idea, im being checked nxt wk for MS my sis has too, and fibromyalgia. I have bad finger arthritis too. i type 2 fingers not all. i have temperpedic bed but all my ribs hurt and diaphram hurts when i lay down which dr says maybe fibro . Brothers kids died of huntingtons disease its brain disease very bad to watch.

I sleep about 3 hrs a nite cause i have shock like myoclonus movement jerkings that shock me awake every 90 sec. Been going on now 2 months , my heart flutters too pass mo off /on. Gotta tell neuro about all that

thanks Llewyn

Donna

310-595-6462

From: mad.monk@...Date: Sat, 25 Jul 2009 15:59:26 -0700Subject: RE: [ ] Donna

Donna,

Is there a way to get one of those hospital bed tables, or something along that line, that could swing over your chair? I'm sure that you might find one in a thrift shop or if you let it be known of your situation that something might come along that would better suit your needs. I understand having to sleep in the recliner, as I'm in that situation, too, though occasionally I'm in a better situation to sleep in my bed with a thick memory foam topper.

Besides the scoliosis, do you have other health issues that you have to deal with? Just wondering.

Llweyn

From: [mailto: ] On Behalf Of Donna Sent: July 25, 2009 2:41 AM Subject: RE: [ ] Donna

well put MWolfeas for "i shoudt have mt computer glued down" its becasue i live in a tiny old Vegas apt and one outlet is across for the cable/tv across from sofa, onlt other outlet is in dining area near kitchen so i dont own this placeand am not aloowed to run nailed cords across thd floor that far, so they have my laptap on end table next where i sit and the cords and all are taped across floor so i dont trip with my walker. This is handicap unit they didnt have any avail. Its too far t nailed borders with the cords from dinign to me at couch. I dont have a dining tabe either so i just live and sleep sitting in my recliner sofa casue back now hurts to lay in bedsorry my laptop is old and over 11 pounds so i cant life it, i must sit half twisting on counch to reply eetc so i kept knocking puter off table and they used clear crafters gel to hold in in place. I have to work w what i have.By the time i write notes my back is hurting from hangin on to end of sofa under my arm so i dotn have to twist in place to face it see thats the reason i haveo t twist not cause im not aware it is baddonna

Donna

310-595-6462