Re: Update

January 4, 2000

Congratualtion ,

Maybe you won't have to go the live donor route. Hope your fever stays down

but don't wait too long to get checked.

Peg

Walderich wrote:

> I just got a call from New England Med. I am now on beeper status. The

> nurse said it could still be several months, but I am high on their

> transplant list now!

>

> Last night I came down with a low-grade fever. It hovered around 100.4

> most of the night, but this a.m. is around 99.8. I'm waiting to see if

> it goes up or down. Hopefully it will continue to decrease, and I'll

> avoid a Club Med stay.

>

> in NH (dx '85, listed 3/98).

>

> ------------------------------------------------------------------------

> Accurate impartial advice on everything from laptops to tablesaws.

> http://click./1/457/4/_/24674/_/946999203

>

> -- Check out your group's private Chat room

> -- /ChatPage?listName= & m=1

January 8, 2000

--

Congrats for being moved up the list to beeper status. I'm sure this stage

of things makes a person very nervous and jittery, however, so I don't

know if " congrats " is the right word. But at least you know that you're

heading toward what is needed (the transplant). May God keep you in

His care and help you through this worrisome time!

I'll be praying for you.

Laurie

January 13, 2000

Hi, ,

I'm just out of the hospital. I am still 2B. As of this

week, I am off work until transplant. I'll update the list later.

MishBruno@... wrote:

what status are you listed as again?

Do you still work?

Thanks,

Michele

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January 14, 2000

Hi!

Could you please tell me how you have worked all of this time?

Hugs,

Biddy

Re: Update

Hi, , I'm just out of the hospital. I am still 2B. As of this week, I am off work until transplant. I'll update the list later. MishBruno@... wrote: what status are you listed as again? Do you still work? Thanks, Michele ------------------------------------------------------------------------ Looking for educational tools for you kids? Find everything you need at SmarterKids.com http://click./1/645/4/_/24674/_/947120115 -- Check out your group's private Chat room -- /ChatPage?listName= & m=1

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January 22, 2000

Biddy,

I missed this post. So, I'm sorry I haven't responded. I am a

marriage and family therapist. After I was listed I had to give up

teaching (at a graduate school in Keene, NH) because I never knew when

I'd have a flare-up and have to miss classes.

However, I could continue to see clients. I cut my client load

to 1/2 and made sure my clients knew that I'd be in and out of the hospital.

So, I worked Mondays and Thursdays for a long time, and did just fine.

I didn't have the confusion you've mentioned. And sitting in a chair

is not physically taxing. However, now I'm too fatigued to keep it

up. But I am really at end-stage now....I've just got to get the

transplant. Hopefully, I can return to work part time quickly after

transplant, although I'm telling everyone that it will be at least 3 months.

We'll see.

But I'm estimating about a six to eight week wait for the liver, whether

it is from a living donor, or from the organ bank.

Recently I've gone about stir-crazy staying at home. It's a good

thing I knit. I also bought a spinning wheel, and I'm learning to

spin the yarn I'll knit with. My close friends are worried that I

might get so obsessed with this hobby that I'll buy sheep next, which would

be a disaster, since I live in a townhouse (no yard and not allowed pets!!!!).

But, you know, you've got to keep the mind occupied. And creating

warm, fuzzy things for friends is just wonderful. Especially since

my friends and family have gifted me with so much love.

in NH

Biddy Santon wrote:

Hi!

Could you please tell me how you have worked all of this time?

Hugs, Biddy

Re: Update

Hi, ,

I'm just out of the hospital. I am still 2B. As of this

week, I am off work until transplant. I'll update the list later.

MishBruno@... wrote:

what status are you listed as again?

Do you still work?

Thanks,

Michele

------------------------------------------------------------------------

Looking for educational tools for you kids?

Find everything you need at SmarterKids.com

http://click./1/645/4/_/24674/_/947120115

-- Check out your group's private Chat room

-- /ChatPage?listName= & m=1

eGroups.com Home: /group/

www. - Simplifying

group communications

eGroups.com Home: /group/

www. - Simplifying

group communications

August 4, 2012

Thanks for the tip Harry, I'll talk to my PCP as I have to see him this

week regardless. In reality I think I have 2 separate issues, but no one

can pin them down. When I first got sick the headaches were beyond

description, and still are. The point here is that the only time in my life

prior to Jan '04 where I had a headache(s) like these were when I was in

the hospital near Ft. Benning, Ga.

The first year was a shock as I was in peak condition. I had just

reached my lifetime goal of bench pressing 400+ lbs in November of '03 and

was a rock solid 232lbs, which for someone on a 5'7 " frame is pretty hard

to accomplish....Hell my chest was 54 " waist 35 " , neck 22.5 " etc... I

routinely would rep 1200+ lbs 10-15x on the simulated squat rack as I would

never attempt to put that kind of weight on my back as I had some lower

back issues prior to becoming ill. That was a great way to make money

betting against all of the " roid-boys " ...One actually bet me I couldn't do

one rep and he bet me 25 per rep....I quit @ 18 as my knees felt like they

were about to explode, and left his wallet awfully light. On top of lifting

4x a week I also ran 3x a week as I a;ways felt great when in good shape

and have the ability to put on pounds way too fast when I become sedentary.

Ever since middle school I had to play sports year round to stay within a

reasonable weight range so I ran track, played football all so my weight

for wrestling would be close....though I truly loved football also.

It was late in my first year of being sick when my back started to go

and in a big way. By the anniversary of my " official diagnosis " of APR 2004

I could no longer walk without a walker. Talk about falling down hard &

fast. The morphine pump, despite its' notable drawbacks really gave me

about as much of a life as I could reasonable expect.

The other weird thing is that aside from this year I almost always feel

as good as I will from mid May through September, and than suffer like hell

through the winter. If it is hot and real humid I actually feel like I

could possibly run IF I was dumb enough to try with my back. Turns out I

have 2 discs in my neck that are hammered but good, 3 or 4 in my mid-spine

and 4/5 in my lower back,plus it is very arthritic.

Thanks for the advice, I'll look into it. Kirk.

>

> Hello Kirk,

> What a frightening experience you have been through. I can empathize with

> every step.

> Has anyone offered you Nucynta? I have seen some literature on it as an

> alternative pain medication.

> Sometimes the opioid can initiate headaches.

> I wish i could give you some other great advice but it sounds like in

> spite of all the trials you are still hanging in there.

>

> Harry S.

>

> To: Stillsdisease

> From: stillsman00@...

> Date: Sat, 4 Aug 2012 09:40:27 -0700

> Subject: Re: update

>

> Hey Brother!

>

> Man, I hate to hear of all this terrible luck you have been having! Seems

> like if we didn't have bad luck we would have no luck at all......just

> damn! What a crappy place to be in life! I do pray you will find some

> relief my friend!

>

> Larry

>

> Subject: update

>

> To: " stillsdisease " <Stillsdisease >

>

> Date: Saturday, August 4, 2012, 8:49 AM

>

> I've known for close to 10 years that my luck really and truly sucks,

>

> but it is getting worse....I think. Back in April I had to have my morphine

>

> pump implant replaced as after 7 years it was at the end of its' life. The

>

> surgery went very well at the time, but a hair over a week later I was back

>

> in with a viscous headache. Not much new there, but this was in May, a time

>

> when the headaches usually start to diminish until the cold weather

>

> returns...which after spending countless amounts of money and driving all

>

> over the Eastern seaboard the best diagnosis anyone could come up with is

>

> " New Daily Persistent Headache " which was diagnosed by Dr. Wm Young (great

>

> DR!) but no one has a solution for them other than incredibly strong

>

> narcotic type of meds that I have no choice to use as little as possible if

>

> I want to be in control of my life and mind, which I do.

>

> This summer we had planned our 1st major vacation since we married 16

>

> 1/2 years ago. We were taking the kids to burg,Va. to go to Busch

>

> Gardens, Water Park USA, Historic downtown burg etc.....Roughly 3

>

> weeks prior to the vacation I bumped the area where the morphine pump

>

> implant was and felt horrendous pain. I lifted my shirt and almost shit

>

> myself as it was as red as an apple, swollen and hot. I immediately

>

> contacted my Neuro Surgeon who saw me the next day. They drew a lot of

>

> blood and put me on Keflex. Nothing showed up in my blood work or on the

>

> cultures. They wanted to rip it out at that point but I convinced them to

>

> let me take my family on vacation..so they gave me another few weeks worth

>

> of Keflex and written orders in case anything happened while I was away.

>

> I wasn't able to enjoy much of the vacation, but the wife and kids had a

>

> blast, which was good enough for me. Than roughly 10-12 days ago I knew I

>

> was in trouble as it was starting to get ugly again. I had an appointment

>

> and was to be admitted and have it removed but I never mad it that far as I

>

> wound up with fevers, chills, a blinding headache and in my

>

> absolutely least favorite place to be, which is the ER!! I've come close to

>

> slugging a couple of assholes that work there and love to look at my

>

> med list and assume I am a druggie, which is about one of the worst thins

>

> I've ever been accused of yet have never, ever been nor do I plan to be. I

>

> had enough friends that I grew up with go down that road enough to know

>

> that one would have to be as dense as hell to even think of trying any of

>

> that shit.

>

> The first day+ was absolute HELL on earth, again but luckily my neuro

>

> surgeon was working this past weekend and it was removed on Sunday. It is

>

> frightening how good death looks like when you're in that kind of agony.

>

> After 2 days I started to feel somewhat human again, but they had yet to

>

> break the headache. One thing that caught me off guard was severe diarrhea

>

> and of course when they did a culture they found C-Dif. OUTSTANDING!

>

> I know I need to lose a bunch of weight but this isn't how I had

>

> envisioned beginning it. Once they found that out I was placed in isolation

>

> which compounded matters as when my back would start to kill me I'd walk

>

> the halls for a few minutes at a time (well, what I call walking at

>

> least.... cane and all..which still beats the walker I had to use for 16

>

> months earlier in this disease.

>

> Now I've gone 8 days with a total of about 14-16 hours of sleep as I

>

> can't get comfortable as my back and neck kill me when I lie down. To

>

> make matters worse they found the cause of the infection, which was a staff

>

> infection.....more damn meds! The worst part is that they have to wait at

>

> least 2.5 months before they can implant another due to the increased risk

>

> of infection.

>

> So much for me getting to enjoy my summer, which is what I look forward

>

> to each and every year as it is the only time of year when I feel halfway

>

> decent. I'll still coach football, but won't be able to be as hands on as I

>

> like to be which is going to kill me.

>

> Oh well. Just thought I'd give this update/rant. I also figured out that

>

> I should never, ever gamble due o this shit luck I have.

>

> Kirk.,

>

> --

>

> Everything in life sucks except things that should!

>

August 10, 2012

I saw my PCP today and mentioned nucynta, but after doing a little

research he decided it was not for me. I've been able to utilize narcotic

pain meds for years responsibly, and this was part of his reasoning as to

why I shouldn't play with what works, so to speak. He told me it is

essentially Ultram, which is one of the many, many (countless) meds I've

been on before with nothing to show for it. He also has concerns that it

will wreak more havoc on my liver, as that apparently is a side effect of

it.

Thanks for the advice though, as I'm always on the lookout for effective

alternative meds. Kirk

> Thanks for the tip Harry, I'll talk to my PCP as I have to see him this

> week regardless. In reality I think I have 2 separate issues, but no one

> can pin them down. When I first got sick the headaches were beyond

> description, and still are. The point here is that the only time in my life

> prior to Jan '04 where I had a headache(s) like these were when I was in

> the hospital near Ft. Benning, Ga.

> The first year was a shock as I was in peak condition. I had just

> reached my lifetime goal of bench pressing 400+ lbs in November of '03 and

> was a rock solid 232lbs, which for someone on a 5'7 " frame is pretty hard

> to accomplish....Hell my chest was 54 " waist 35 " , neck 22.5 " etc... I

> routinely would rep 1200+ lbs 10-15x on the simulated squat rack as I would

> never attempt to put that kind of weight on my back as I had some lower

> back issues prior to becoming ill. That was a great way to make money

> betting against all of the " roid-boys " ...One actually bet me I couldn't do

> one rep and he bet me 25 per rep....I quit @ 18 as my knees felt like they

> were about to explode, and left his wallet awfully light. On top of lifting

> 4x a week I also ran 3x a week as I a;ways felt great when in good shape

> and have the ability to put on pounds way too fast when I become sedentary.

> Ever since middle school I had to play sports year round to stay within a

> reasonable weight range so I ran track, played football all so my weight

> for wrestling would be close....though I truly loved football also.

> It was late in my first year of being sick when my back started to go

> and in a big way. By the anniversary of my " official diagnosis " of APR 2004

> I could no longer walk without a walker. Talk about falling down hard &

> fast. The morphine pump, despite its' notable drawbacks really gave me

> about as much of a life as I could reasonable expect.

> The other weird thing is that aside from this year I almost always feel

> as good as I will from mid May through September, and than suffer like hell

> through the winter. If it is hot and real humid I actually feel like I

> could possibly run IF I was dumb enough to try with my back. Turns out I

> have 2 discs in my neck that are hammered but good, 3 or 4 in my mid-spine

> and 4/5 in my lower back,plus it is very arthritic.

> Thanks for the advice, I'll look into it. Kirk.

>

>>

>> Hello Kirk,

>> What a frightening experience you have been through. I can empathize

>> with every step.

>> Has anyone offered you Nucynta? I have seen some literature on it as an

>> alternative pain medication.

>> Sometimes the opioid can initiate headaches.

>> I wish i could give you some other great advice but it sounds like in

>> spite of all the trials you are still hanging in there.

>>

>> Harry S.

>>

>> To: Stillsdisease

>> From: stillsman00@...

>> Date: Sat, 4 Aug 2012 09:40:27 -0700

>> Subject: Re: update

>>

>> Hey Brother!

>>

>> Man, I hate to hear of all this terrible luck you have been having!

>> Seems like if we didn't have bad luck we would have no luck at

>> all......just damn! What a crappy place to be in life! I do pray you will

>> find some relief my friend!

>>

>> Larry

>>

>> Subject: update

>>

>> To: " stillsdisease " <Stillsdisease >

>>

>> Date: Saturday, August 4, 2012, 8:49 AM

>>

>> I've known for close to 10 years that my luck really and truly sucks,

>>

>> but it is getting worse....I think. Back in April I had to have my

>> morphine

>>

>> pump implant replaced as after 7 years it was at the end of its' life. The

>>

>> surgery went very well at the time, but a hair over a week later I was

>> back

>>

>> in with a viscous headache. Not much new there, but this was in May, a

>> time

>>

>> when the headaches usually start to diminish until the cold weather

>>

>> returns...which after spending countless amounts of money and driving all

>>

>> over the Eastern seaboard the best diagnosis anyone could come up with is

>>

>> " New Daily Persistent Headache " which was diagnosed by Dr. Wm Young (great

>>

>> DR!) but no one has a solution for them other than incredibly strong

>>

>> narcotic type of meds that I have no choice to use as little as possible

>> if

>>

>> I want to be in control of my life and mind, which I do.

>>

>> This summer we had planned our 1st major vacation since we married 16

>>

>> 1/2 years ago. We were taking the kids to burg,Va. to go to Busch

>>

>> Gardens, Water Park USA, Historic downtown burg etc.....Roughly 3

>>

>> weeks prior to the vacation I bumped the area where the morphine pump

>>

>> implant was and felt horrendous pain. I lifted my shirt and almost shit

>>

>> myself as it was as red as an apple, swollen and hot. I immediately

>>

>> contacted my Neuro Surgeon who saw me the next day. They drew a lot of

>>

>> blood and put me on Keflex. Nothing showed up in my blood work or on the

>>

>> cultures. They wanted to rip it out at that point but I convinced them to

>>

>> let me take my family on vacation..so they gave me another few weeks worth

>>

>> of Keflex and written orders in case anything happened while I was away.

>>

>> I wasn't able to enjoy much of the vacation, but the wife and kids had a

>>

>> blast, which was good enough for me. Than roughly 10-12 days ago I knew I

>>

>> was in trouble as it was starting to get ugly again. I had an appointment

>>

>> and was to be admitted and have it removed but I never mad it that far as

>> I

>>

>> wound up with fevers, chills, a blinding headache and in my

>>

>> absolutely least favorite place to be, which is the ER!! I've come close

>> to

>>

>> slugging a couple of assholes that work there and love to look at my

>>

>> med list and assume I am a druggie, which is about one of the worst thins

>>

>> I've ever been accused of yet have never, ever been nor do I plan to be. I

>>

>> had enough friends that I grew up with go down that road enough to know

>>

>> that one would have to be as dense as hell to even think of trying any of

>>

>> that shit.

>>

>> The first day+ was absolute HELL on earth, again but luckily my neuro

>>

>> surgeon was working this past weekend and it was removed on Sunday. It is

>>

>> frightening how good death looks like when you're in that kind of agony.

>>

>> After 2 days I started to feel somewhat human again, but they had yet to

>>

>> break the headache. One thing that caught me off guard was severe diarrhea

>>

>> and of course when they did a culture they found C-Dif. OUTSTANDING!

>>

>> I know I need to lose a bunch of weight but this isn't how I had

>>

>> envisioned beginning it. Once they found that out I was placed in

>> isolation

>>

>> which compounded matters as when my back would start to kill me I'd walk

>>

>> the halls for a few minutes at a time (well, what I call walking at

>>

>> least.... cane and all..which still beats the walker I had to use for 16

>>

>> months earlier in this disease.

>>

>> Now I've gone 8 days with a total of about 14-16 hours of sleep as I

>>

>> can't get comfortable as my back and neck kill me when I lie down. To

>>

>> make matters worse they found the cause of the infection, which was a

>> staff

>>

>> infection.....more damn meds! The worst part is that they have to wait at

>>

>> least 2.5 months before they can implant another due to the increased risk

>>

>> of infection.

>>

>> So much for me getting to enjoy my summer, which is what I look forward

>>

>> to each and every year as it is the only time of year when I feel halfway

>>

>> decent. I'll still coach football, but won't be able to be as hands on as

>> I

>>

>> like to be which is going to kill me.

>>

>> Oh well. Just thought I'd give this update/rant. I also figured out that

>>

>> I should never, ever gamble due o this shit luck I have.

>>

>> Kirk.,

>>

>> --

>>

>> Everything in life sucks except things that should!

>>

August 10, 2012

Hello Kirk,

Good to hear from you. I have never been prescribed Nucynta though I have

received a fair amount of literature from the manufacturer. I do not want to

make any comments about the veracity of what your PCP said to you regarding

Nucynta except to say more likely than not he has not prescribed it yet. I too

have done some research on Nucynta. I would like to call your attention to an

interesting post on a site called Healingwell.com from an experienced user of

opioids. He had been on Nucynta for about 6 months with earlier comparable

periods on other more common opioids. The fellow who posted the note goes by the

name of " grain of salt. " He makes several interesting observations on Nucynta's

effects, metabolism, and on its dual mechanism of action. In addition the

metabolic breakdown of Nucynta appears to be less dependent on the liver

resulting in less liver toxicity. Also due to Nucynta's dual effect the problems

related to tolerance are less and develop at a lesser rate.

It is always of value to hear the remarks of someone who has actually taken the

medication for documented indiications and has experiences with other comparable

meds.

If you are interested take a look at his note on the Healingwell.com website.

Thank-you,

Harry Steinman, M.D.

To: Stillsdisease

From: kbonanny@...

Date: Fri, 10 Aug 2012 02:50:25 -0400

Subject: Re: update