Debs

[Guest guest]

a,

Thanks for your words of encouragement. I have finally stopped crying and

know what the task at hand is. I really feel that my doctor has the only

clinical plan that is practical for me right now with this raging infection.

Unfortunately, time is not on my side and I must act quickly before the

infection spreads to the other knee. I am scared to death and sleep very

little, but it is the unknown that scares me. I will either take my laptop

with me or have one of my girls post and let you all know how things are

going.

I have so many good wishes and prayers on this list of wonderful people, that

God has got to hear them and take mercy on me. Right now, my church has been

very helpful in sending over meals for Ron and the kids in addition to the

prayers that they are offering up. Thru all this I can still say that I am

still a very blessed woman.

Thanks for always being there with a chuckle and your sensible shoulder for

me to lean on and I shall never forget that. People tell me that God makes

things happen for a reason, well, I am beginning to see the reason for this

is so that our paths would cross and you would enrich my life with your

knowledge, compassion and love.

Someone will keep in touch with y'all and hopefully I will talk to you soon.

Gentle, tender, still waiting for my Florida neighbor on I-95, angel hugs,

Deb

[Guest guest]

Anjilah,

Thanks for the support. It is so important to the general well being and

fighting of these diseases. You all give me so much strength and I feel at

times that I need to give some back. You sound as though you are holding

your own, true?

I will bet that you re busy, but it is a good kind of busy. Remember that we

are ALWAYS here for you and so enjoy your posts when you have the time.

Right now, the plans stand that I should be a direct admit from his office to

the hospital for the severe sepsis tomorrow morning. We will be going over

there as a team. Ortho and infectious disease will be on site and nephrology

and rheumatology via phone. I am scared to death that I have to have the

original replacement taken out but if you went thru the kidney transplant,

than I can do this! I will either bring my laptop with me and update myself

or have one of my daughters update you guys.

Once again, thanks for your support and be sure to drop in more to let us

know that you are doing OK. We miss you!!!!

Gentle, tender, missing our friend angel hugs,

Debs in FL

[Guest guest]

Heidi,

Thanks for you words of support. I have now decided to dip those straws in

Jim Beam before I start sucking on them. Jus returned from the ortho and he

is going to leave in the old prosthesis as the outside doesn't look that bad

anymore. So now I am stuck with this huge hole in my knee and keep dressing

the wound or leave it alone and stop taking the antibiotics or take them.

How can these so called docs call themselves docs?

I have lost so much sleep regarding this and am in so much pain I can't even

think straight. Hope your day is going better.

Debs in FL

[Guest guest]

Ah Tess,

I see that you also write comedy besides just beautiful poetry. I am laying

here in bed in tears because I am in such pain. Now the hospital has called

to schedule some kind of test. I guess that everyone here on the board was

right & I was the big dummy and believed in my doctor that he was going to

irradicate this infection in total. I will never believe another person in

the medical field if their tongue comes notarized. With this latest turn of

events, maybe I will be going to Chicago after all, just one way.

Thank you for your covert " hospital operation " plan it does give me something

to chuckle about when I am alone with my tears.

Debs

[Guest guest]

Happy Birthday Iris, hope your day is spent those you love.

I would not trust another medical professional if their tongues came

notarized. This walk is all too familiar to me as this is exactly what

happened with my Dad and his end result was possible amputation and when they

were unable to find an anesthesiologist to " put him to sleep " .........death.

It took a very special part of me to muster the strength to even OK to this

OR procedure to remove the original device and now I feel like I was made a

fool of. I know how these infections cans just sit there and lurk.

Don't eat too much birthday cake but have a great day anyway!

Love,

Debs

[Guest guest]

Kathe,

Thanks so much for your encouragement. I need this sepsis resolved before it

goes to my other knee and this was going to be the procedure that would

almost guarantee it. Now I don't trust any medical professional. I even

sensed this before we went into his office. I had my bag all packed and I

told Ron you know there is a chance that we are just going to turn around and

go home. Boy did I have that one pegged right! No, what I will be doing is

using steri strips to try to close the hole, he told me doing that would take

about 9 months to close the wound and it would not look too attractive.

Well, it doesn't look to attractive right now either and the pain is

indescribable. Of course, now my typing is clouded by the tears that don't

seem to want to stop.

I know that I am very fortunate in that I have my family and my dear friends

to support me. I have overcome several difficult situations in my life and

in time I will overcome this also, by myself. I guess I just made a very

poor choice in whom to trust and now my health is on the line.

Thanks for letting me ramble and I will write more when the tears stop and

thoughts become a bit more clear.

Debs

[Guest guest]

Debs...I am so sorry that once again the docs have

left you feeling so helpless and have not pointed you

in the direction you need to be going. How much can

one person take? I am sure that this is the question

you are asking.

Are there any other specialists in the area that you

could consult? I bet that you would travel anywhere

to have definite answers.

What a great idea...Jim Beam straws...I bet we could

raise a lot of money with a product such as that. I

wouldn't have to worry about pain relief if I had

them.

Please keep us updated as we worry so much when we

don't know what is going on. Hugs to You, Iris

> Thanks for you words of support. I have now decided

> to dip those straws in

> Jim Beam before I start sucking on them. Jus

> returned from the ortho and he

> is going to leave in the old prosthesis as the

> outside doesn't look that bad

> anymore. So now I am stuck with this huge hole in

> my knee and keep dressing

> the wound or leave it alone and stop taking the

> antibiotics or take them.

> How can these so called docs call themselves docs?

>

> I have lost so much sleep regarding this and am in

> so much pain I can't even

> think straight. Hope your day is going better.

>

> Debs in FL

>

>

[Guest guest]

<PRE>sorry to hear of all the trouble you are having debs. i know how

frustrating

it can be. especially when we are dealing with very powerful meds. they

really do not understand all of the risks and this is why they practice

medicine. my infections became a subject at one of the state health dept

meeting. of coarse they didn't use my name (thank god) but every time i get

an infection i still wonder about remicade. i was shocked to hear they gave

carol an infusion with pleurisy. i hope she has good results. i wonder what

will happen to me after i am off prednisone, and i'm still not sure i want to

take an anti seizure medicine yet. but i am happy to be declining my meds.

i'm about to the point of saying whatever happens, is in gods hands. you are

very strong to be going through all this and it makes me feel like i've got a

piece of cake. gotta watch those triglycerides now. put that cake back!!!

hope you can take control again soon. take care of yourself and be careful

out there. kathy in il

[Guest guest]

Dear Sweet Debs....you are not stupid nor a fool! You are suffering

terrifically and on top of that have to make very difficult decisions.

Perhaps a bigger, well thought of hospital is really a good idea.

You've gone through too much already. I wish I could just give you a

hug and wipe away your tears. The prayers are flying Heavenward.

All my love, all my hugs, all my prayers....

Tess ((((((Dearest Debs)))))

[Guest guest]

Thank you for the links a. I have no idea what his thinking was behind

this change of plans. My knee is still draining like a faucet. I am now

self treating with steri strips to attempt to close the hole in time (a long

time). I don't know how successful this will be, but hey, it looks like I am

on my own anyway. I have called the nephrologist and because the hospital

sent incomplete hospital records, he won't see me until my next appt in

December because the records he received didn't show the low potassium of

2.9, it just showed the lab results of the normal potassium of 4.3 so no need

to see him right now. I was supposed to receive another shipment of IV

antibiotics but they were going to hold off until after I got home from the

hospital and I call the nursing agency and they have to get this straightened

out with the doctors, nothing of which was done today. Appt with infectious

disease doctor was canceled on Thursday as I was supposed to be in the

hospital and they won't have another opening for 3-4 weeks. I am still

getting around in a wheelchair as I cannot put any weight on that right leg

whatsoever due to the severe pain. I am very tired of fighting this, the

original surgery was on 8-8-02 and just can't fight anymore. It took a lot

of strength for me to muster up the energy to do the surgery that was planned

and had my mindset that this was the best way to go and now to have the

entire game changed in midstream, makes no sense to me. If something is

infected, I was always under the impression that it should be taken out.

When I suggested that another washing be done prior to the removal of the

original prosthesis, he said that would do me no good as he might miss a

piece of infection and then he would be doing me no favors. His first

suggestion today was just to go see a plastic surgeon in 3-4 days to get a

skin graft to get this hole repaired. I asked why he couldn't do it and that

is when the other plan came into effect. He may do another washing and

possible closure of the hole on Thursday but it seems that his office and the

hospital can't get it all together so I think it is best to just walk (?)

away from the situation and try to figure out something myself. What a mess,

my poor tummy is taking the brunt of all this stress and the tears keep

falling. It seems like it has been a very long day for me. Yes, I can see

where I have made the big mistakes in choosing a physician and until I can

learn to trust again, I best stay away from any and all of them.

Once again, thank you for the links that you have passed along to me.

Debs

[Guest guest]

Hi Debs:

Yes I am doing okay. I saw my new Pulmonary Dr. and he said I have

Atelectasis and Asthma. He said the Asthma isn't that severe but the

Atelectasis is what is giving me the shortness of breath but he gave me a new

inhaler which is making a difference. Thank God the Shortness of Breath is a

lot less.

( The Atelectasis is when part of the lung is deflated.) He said the

osteoporosis that I have is squeezing my lungs. So they gave me new medicine

for the osteoporosis too. They also lowered my prednisone to help me loose

weight..

Somehow we just keep going on and you will too. I will pray for you that you

improve too.

Sincerely, Colletti

PS: Many Blessed hugs, forever.

[Guest guest]

<<. i was shocked to hear they gave

carol an infusion with pleurisy. >>

Hi Kathy,

They don't think the pleurisy is infectious, they think it's just

inflammation from the RA. My rheumy said he thinks the Remicade will

actually help it. So far it hasn't happened though. All these meds are

scary, and it does make me nervous to have the chest wall pain continuing.

My MD doesn't know what to make of it, but the rheumy said he has no doubt

it's RA related.

I hope things go well with your prednisone taper, and that you feel great.

Much love,

Carol

Re: [ ] DEBS

<PRE>sorry to hear of all the trouble you are having debs. i know how

frustrating

it can be. especially when we are dealing with very powerful meds. they

really do not understand all of the risks and this is why they practice

medicine. my infections became a subject at one of the state health dept

meeting. of coarse they didn't use my name (thank god) but every time i get

an infection i still wonder about remicade. i was shocked to hear they gave

carol an infusion with pleurisy. i hope she has good results. i wonder what

will happen to me after i am off prednisone, and i'm still not sure i want

to

take an anti seizure medicine yet. but i am happy to be declining my meds.

i'm about to the point of saying whatever happens, is in gods hands. you are

very strong to be going through all this and it makes me feel like i've got

a

piece of cake. gotta watch those triglycerides now. put that cake back!!!

hope you can take control again soon. take care of yourself and be careful

out there. kathy in il

[Guest guest]

on 9/17/02 5:45 PM, kringlemom@... at kringlemom@... wrote:

> i wonder what

> will happen to me after i am off prednisone, and i'm still not sure i want to

> take an anti seizure medicine yet. but i am happy to be declining my meds.

> i'm about to the point of saying whatever happens, is in gods hands.

Are you talking about neurontin? I have a friend who has RA and

fibromyalgia. She takes neurontin for her fibro, and says it works wonders

for her. Maybe you'll have the same results.

Sue in NC

[Guest guest]

Debs,

This turn of events is puzzling to me. Why the change in plans? I hope

I¹m reading wrong that you¹re stopping the IV Antibiotics? I know how

scared you are Debs. I¹d be scared shitless.

I know we¹ve talked about the Mayo before, but now that this has become so

serious, I hope you give it thought. They are the best in the country, and

even though nothing is notarized on their tongues, they have the best

credentials in the country. The sites I sent you didn¹t have a very high

success rate with sepsis and IV antibiotics. They seem to favor removing

the TKR and having it put back at a later time. I know you had your mind

set to do this. How do they plan to monitor the situation?

How I wish there was something I could do to help. My prayers continue

Debs. How is your stomach holding out? Are you able to eat? One person

should not have to have such a heavy load.

Hugs,

a

[Guest guest]

Carol: Every time I have had pleurisy ...the docs said

with what I take for SD there was nothing else they

could give me as that is how it is treated.....so the

remicade should help....pleurisy is inflammation....so

what they told you is the same thing I have heard

several times....Kathi in OK

--- Carol <carol@...> wrote:

> <<. i was shocked to hear they gave

> carol an infusion with pleurisy. >>

>

> Hi Kathy,

>

> They don't think the pleurisy is infectious, they

> think it's just

> inflammation from the RA. My rheumy said he thinks

> the Remicade will

> actually help it. So far it hasn't happened though.

> All these meds are

> scary, and it does make me nervous to have the chest

> wall pain continuing.

> My MD doesn't know what to make of it, but the

> rheumy said he has no doubt

> it's RA related.

>

> I hope things go well with your prednisone taper,

> and that you feel great.

>

> Much love,

>

> Carol

>

>

> Re: [ ] DEBS

>

> <PRE>sorry to hear of all the trouble you are having

> debs. i know how

> frustrating

> it can be. especially when we are dealing with very

> powerful meds. they

> really do not understand all of the risks and this

> is why they practice

> medicine. my infections became a subject at one of

> the state health dept

> meeting. of coarse they didn't use my name (thank

> god) but every time i get

> an infection i still wonder about remicade. i was

> shocked to hear they gave

> carol an infusion with pleurisy. i hope she has

> good results. i wonder what

> will happen to me after i am off prednisone, and i'm

> still not sure i want

> to

> take an anti seizure medicine yet. but i am happy to

> be declining my meds.

> i'm about to the point of saying whatever happens,

> is in gods hands. you are

> very strong to be going through all this and it

> makes me feel like i've got

> a

> piece of cake. gotta watch those triglycerides now.

> put that cake back!!!

> hope you can take control again soon. take care of

> yourself and be careful

> out there. kathy in il

>

>

>

>

[Guest guest]

hi Debs, this may not be the same; but about 10years ago, I had a full

hysterectomyand a large tumor removed, the day I got home, I was getting up

from the couch and my stitches all opened from my belly buton down (about 6

inches) after returning tothe hospital emergency room,the ER doc chose to

not close the gaping hole in my stomach..but opened it all the way,

irrigated the wound and steri stripped it. I called my gyn the next day and

she had me come in immediately...she was angry at how the er treated the

wound..but said because they didn't close it immediately.. she said she had

no choice but to leave it open..for nearly 6 months, I had to irrigate with

peroxide and steri strip it 3-4 times per day. It took the 6 months to have

the wound heal over.. There were several times I had to go back for a

thorough scraping and cleaning....it was a horrible 6 months...lots of tears

and frustration...no nurse was provided; but I had a good friend who came by

a couple times a day and irrigated by pouring the peroxide into the

wound,,,and steri stripping. The pain was unbearable at times...and I had

many tearful days. Unfortunately, I was allergic to all the tapes and broke

out in a painful burning rash wherever the steri strips were taped to my

stomach. I was left with an ugly gaping 6 " scar (about 1/2 " deep) but once

the wound closed, I have no difficulty...it is ugly; but no pain or

continued infection difficulty. This is kind of long; but what you are

going through sounded so similar...I wanted you to know that the wound did

close over eventually for me...I know it is hard to separate the quacks from

the gems in docs...the ER quack who didn't treat me correctly when I first

went back to the hospital made me very afraid to keep trying docs...but my

gyn was great...and the wound did eventually heal...don't give up Debs...I

am stubborn and determined and I think you are the same kind of

person...keep looking for that good doc that will know exactly what to

do..the hardest part was the time it all took to heal...and putting the

peroxide into a painful hole...but I have no trouble from the wound...and

not that many folks see the wound!! Thinking of you Debs...hope today is the

day you find the right treatment...marge

Re: [ ] Debs

> Thank you for the links a. I have no idea what his thinking was

behind

> this change of plans. My knee is still draining like a faucet. I am now

> self treating with steri strips to attempt to close the hole in time (a

long

> time). I don't know how successful this will be, but hey, it looks like I

am

> on my own anyway. I have called the nephrologist and because the hospital

> sent incomplete hospital records, he won't see me until my next appt in

> December because the records he received didn't show the low potassium of

> 2.9, it just showed the lab results of the normal potassium of 4.3 so no

need

> to see him right now. I was supposed to receive another shipment of IV

> antibiotics but they were going to hold off until after I got home from

the

> hospital and I call the nursing agency and they have to get this

straightened

> out with the doctors, nothing of which was done today. Appt with

infectious

> disease doctor was canceled on Thursday as I was supposed to be in the

> hospital and they won't have another opening for 3-4 weeks. I am still

> getting around in a wheelchair as I cannot put any weight on that right

leg

> whatsoever due to the severe pain. I am very tired of fighting this, the

> original surgery was on 8-8-02 and just can't fight anymore. It took a

lot

> of strength for me to muster up the energy to do the surgery that was

planned

> and had my mindset that this was the best way to go and now to have the

> entire game changed in midstream, makes no sense to me. If something is

> infected, I was always under the impression that it should be taken out.

> When I suggested that another washing be done prior to the removal of the

> original prosthesis, he said that would do me no good as he might miss a

> piece of infection and then he would be doing me no favors. His first

> suggestion today was just to go see a plastic surgeon in 3-4 days to get a

> skin graft to get this hole repaired. I asked why he couldn't do it and

that

> is when the other plan came into effect. He may do another washing and

> possible closure of the hole on Thursday but it seems that his office and

the

> hospital can't get it all together so I think it is best to just walk (?)

> away from the situation and try to figure out something myself. What a

mess,

> my poor tummy is taking the brunt of all this stress and the tears keep

> falling. It seems like it has been a very long day for me. Yes, I can

see

> where I have made the big mistakes in choosing a physician and until I can

> learn to trust again, I best stay away from any and all of them.

>

> Once again, thank you for the links that you have passed along to me.

>

> Debs

>

>

>

[Guest guest]

Hi Deb,

I can't stop thinking about you and all the problems you are

having. It makes mine seem so small. I wish there was something I

could do to help you and your family. I do think that a's advise to

call the Mayo is good. At 's urging last year I called the Mayo.

They are very helpful and caring. I can tell you, they were the ones

who told me I have no choice but to go for the whipple. You can just

call and start from there, they are nice. I do hope today is better for

you. Rest my friend, a lot of prayers are being said for you.

Lynn (MeMom)