NEw Member

[Guest guest]

In a message dated 01/12/2000 9:29:35 PM Central Standard Time,

castaldi@... writes:

<< I am glad to have found the rest of you. Debbie

>>

Welcome Debbie to this wonderful and supportive group of folks.

Lu

[Guest guest]

Hi Debbie and welcome!!!!!!!!!!!!

[Guest guest]

Debbie, welcome to the group. You sound like a person with a positive

attitude. After I got sick from RP, I gained a lot of weight from the

Prednisone and stressful eating. I have been trying to exercise for some

time now to lose some of this weight and not to lose too much muscle. I once

fast walked 10 miles a day. Now I am lucky to walk a half mile, slow at

that. It is great that you can run 3 miles a day. Again, Debbie, welcome.

Ronnie

In a message dated 1/12/2000 7:29:31 PM Pacific Standard Time,

castaldi@... writes:

<< Hi everyone I am the 90th member of your group. I am the mother of two

wonderful boys ages 10 and 13 years. I was diagnosed with RP and RA in 1991

after two years of listening to doctors tell me go home and take a hot bath.

I have worked my way off many medications and currently just take placquenil

and ibuprophen. What has intriqued me to write is the lastest thread on

heart palpatations. Just eight months ago I developed such palpatations

which drove me to my GP because congestive heart failure runs in my family.

After two days of testing which involved treadmill runs, MRI, ECG and many

others I have forgotten, they said it was a routine thing and gave me Inderol

to lower my heart rate. It has helped tremendously and I am much more

comfortable. When diagnosed with RP I thought the world was coming to an end

for me but I decided I was going to better myself in spite of it. I gave up

smoking, which I should have done a long time ago, and started into exercise

which seeems to be my best defense. I still have days that I can't raise my

arms over my head, and others that my ears are so painful it is hard to think

but I also know that I am strong enough to run three miles a day and things

could be much worse. I am glad to have found the rest of you. Debbie

>>

[Guest guest]

Debbie, welcome to the group. You sound like a person with a positive

attitude. After I got sick from RP, I gained a lot of weight from the

Prednisone and stressful eating. I have been trying to exercise for some

time now to lose some of this weight and not to lose too much muscle. I once

fast walked 10 miles a day. Now I am lucky to walk a half mile, slow at

that. It is great that you can run 3 miles a day. Again, Debbie, welcome.

Ronnie

In a message dated 1/12/2000 7:29:31 PM Pacific Standard Time,

castaldi@... writes:

<< Hi everyone I am the 90th member of your group. I am the mother of two

wonderful boys ages 10 and 13 years. I was diagnosed with RP and RA in 1991

after two years of listening to doctors tell me go home and take a hot bath.

I have worked my way off many medications and currently just take placquenil

and ibuprophen. What has intriqued me to write is the lastest thread on

heart palpatations. Just eight months ago I developed such palpatations

which drove me to my GP because congestive heart failure runs in my family.

After two days of testing which involved treadmill runs, MRI, ECG and many

others I have forgotten, they said it was a routine thing and gave me Inderol

to lower my heart rate. It has helped tremendously and I am much more

comfortable. When diagnosed with RP I thought the world was coming to an end

for me but I decided I was going to better myself in spite of it. I gave up

smoking, which I should have done a long time ago, and started into exercise

which seeems to be my best defense. I still have days that I can't raise my

arms over my head, and others that my ears are so painful it is hard to think

but I also know that I am strong enough to run three miles a day and things

could be much worse. I am glad to have found the rest of you. Debbie

>>

[Guest guest]

Debbie Welcome to the group it's great to have you with us! love Sue P

New Member

> From: castaldi@...

>

> Hi everyone I am the 90th member of your group. I am the mother of two

wonderful boys ages 10 and 13 years. I was diagnosed with RP and RA in 1991

after two years of listening to doctors tell me go home and take a hot bath.

I have worked my way off many medications and currently just take placquenil

and ibuprophen. What has intriqued me to write is the lastest thread on

heart palpatations. Just eight months ago I developed such palpatations

which drove me to my GP because congestive heart failure runs in my family.

After two days of testing which involved treadmill runs, MRI, ECG and many

others I have forgotten, they said it was a routine thing and gave me

Inderol to lower my heart rate. It has helped tremendously and I am much

more comfortable. When diagnosed with RP I thought the world was coming to

an end for me but I decided I was going to better myself in spite of it. I

gave up smoking, which I should have done a long time ago, and started into

exercise which seeems to be my best defense. I still have days that I can't

raise my arms over my head, and others that my ears are so painful it is

hard to think but I also know that I am strong enough to run three miles a

day and things could be much worse. I am glad to have found the rest of

you. Debbie

>

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

[Guest guest]

hi debbie--WELCOME to the group. i can't believe you run three miles a

dy. m hats off oyou. my back hurts walking to the kitchen without

support. keep up the god work.. i know i feel better when i can

excercise a little. when i am havinga good wekk i try : what i do is g

to a store amd hold on to shopping cat.(and walk(since my scoliosis has

gotten so bad from the five fractures i have to hold on to support to

give my back a brak) and i walk until i get tired. in my better months

this had gtten up to an hour and a half of walking and holding. however

i have been sick more lately. i have to buld up my strenght again'

so again my hats off to you and run a mile for me

thanks an again welcome.

deise

[Guest guest]

In a message dated 3/2/00 1:24:21 PM Central Standard Time, katwench@...

writes:

<< I live in NY but have an appt with Dr. Trentham this month for a full

evaluation, >>

I am typing this so you dont get disapointed when you go to Trentham, He Only

Spends About 20 Minns with you and thats it! So dont get your hopes to high,

a-lot of us got our hopes up only to be knocked back down .

Welcome to the Group! I hope someone will answer your other question.

P

[Guest guest]

Hi Kathleen and welcome--Where in New York do you live..I live in Bergen

County in New Jersey but I work in a hospital in Suffern,NY..My husband Pete

has RP..his has been confined to the Vestibular System but as you will find

out everyone with this disease is different..Janet

[Guest guest]

Kathleen,

I don't have an answer to your question, but in my case it has been

progressive from deforming my nose to 10 years later spreading to my ears.

I've found that if I scratch or injure and ear, it does not heal. I had a

melanoma surgery which did not heal. Seems to me, one cartiledge is

disturbed, RP steps in and hinders the healing process - so be careful out

there!

So, no percentages to offer but:

1983 - saddle nose deformity after extremely painful episodes. Once or twice

per year episodes for 14 years before it spread to one ear and then both

ears.

New Member

Hello everyone!

I am new to the group and have was diagnosed with RP a year ago. It

is currently only affecting my left ear and in the beginning, only

had a flare up once or twice a year. I have now had three (3)

episodes since December 1999. Can any of you answer a question that

hasn't been answered by the Dr's yet ... what is the percentage rate

of those with RP staying centralized in the area first diagnosed?

I live in NY but have an appt with Dr. Trentham this month for a full

evaluation, but if anyone has the answer to my question, it would

greatly help, as well have all your e-mails I try to get through.

Thanks for your help in adavance.

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hi and welcome. maybe we can come up with answers that our doctors can't

[Guest guest]

Hi Kathleen, I was diagnosed 4 months ago but that's after one year of my right ear flaring and then moving to the left ear. So far this is the only areas the dr's have confirmed affected by RP (I think there may be more). I have a question for you, did you just contact Dr. Trentham to sch. an evaluation or did this go through your current Dr. and insurance? I'm trying to get evaluated and figure out how/who to do it? thanks Kathy C.

New MemberHello everyone!I am new to the group and have was diagnosed with RP a year ago. Itis currently only affecting my left ear and in the beginning, onlyhad a flare up once or twice a year. I have now had three (3)episodes since December 1999. Can any of you answer a question thathasn't been answered by the Dr's yet ... what is the percentage rateof those with RP staying centralized in the area first diagnosed? I live in NY but have an appt with Dr. Trentham this month for a fullevaluation, but if anyone has the answer to my question, it wouldgreatly help, as well have all your e-mails I try to get through. Thanks for your help in adavance.------------------------------------------------------------------------MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE!Get a NextCard Visa, in 30 seconds! Get rates as low as 0.0% Intro or 9.9% Fixed APR and no hidden fees.Apply NOW!http://click./1/2122/0/_/32049/_/952021942/------------------------------------------------------------------------hi and welcome. maybe we can come up with answers that our doctors can't

[Guest guest]

Thanks for your input. I'm hoping to have more answers after meeting with Dr.,

but won't get my hopes up. I look forward to Dr. B's results of her study in

April.

[Guest guest]

Thanks for the welcome and your input. I'll let you know the outcome

[Guest guest]

Hi Janet .. thanks for the welcome I live in Congers, near Nyack and work in

Woodcliff Lake, NJ. Do you work at Good Sam? I was there a couple of years ago

for kidney surgery. Also, thanks for the info on your husband. I think it's

great you spend the time to find the support you need for both of you. K

[Guest guest]

Kathleen- Yes I work at Good Sam..I have worked there off and on since

1969!!!!!!!Gosh we are almost neighbors.May I ask what doc you go to??There

arn't too many that are knowledgable about RP.Janet

[Guest guest]

......welcome. I have had fibro for 4 years now along with allot of

other things. I am going through a really bad time (emotionally) right

now, but I will continue to post as I can. Glad to meet you. Jan M

[Guest guest]

In a message dated 9/13/00 1:49:08 PM Eastern Daylight Time,

ReeAnnEgroups@... writes:

<<

HELLO,my name is Almeta Willitts and I have pancreatitis.I was surfing the

net, looking for answers to my many questions. All my doctors tell me is

that I do have pancreatitis. But no treatment is forth coming. The pain and

throwing up . have wore me down. What has been done for you? Are you cured?

My better half has been great, But could never know what it is like. Nice

talking with someone who does. I do not feel alone.My attacks are getting

worst and coming faster. Any infro you could give me would be so very

helpful. Up untill June of " 99 " . I had a fulltime job. Plus ran my home. Now

its all I can do to get out of bed sometimes.

Thank you

almeta

>>

Hi Almeta, I am sorry that you too are suffering from cp. We will all be here

to help you in any way we can. Shirley

[Guest guest]

In a message dated 9/16/00 11:30:20 AM Eastern Daylight Time,

dbcbabmb@... writes:

<< es.

After reading some of your messages, I know that there are many of you that

are suffering much more than I and I hope that all of you get better very

soon.

Charlotte

>>

Hi Charlotte, welcome to the group. We are happy to have you as part of our

family. Ask any questions and we will try to help you with them. Shirley

[Guest guest]

In a message dated 9/16/00 11:30:20 AM Eastern Daylight Time,

dbcbabmb@... writes:

<< es.

After reading some of your messages, I know that there are many of you that

are suffering much more than I and I hope that all of you get better very

soon.

Charlotte

>>

Hi Charlotte, welcome to the group. We are happy to have you as part of our

family. Ask any questions and we will try to help you with them. Shirley

[Guest guest]

you know..the percentages always vary with the doctor you see, but...at least 60% of patients with Pancreatitis have Gall Stones...I know it was the first thing they checked with me...Thank goodness they did not make me have mine out to discover only that it was not the answer...How long have you been dealing with the pain? For me, I have had abdominal pain for at least 10 years and only in the last 7-8 months has it been constant and unbearable...even now, after many many procedures and 2 ERCP with stents...it is actually worse...but, with the luck to find a good doctor and a great pain management doctor, i can at least claim part of my life back and not be so depressed over the overall answer the medical community has..which is "we do not know why you have this, we cannot fix it and no, there is nothing you/we can do except control the pain."...just know that you are not by yourself...I only found this group TODAY and just reading others' stories actually made me cry, as i finally saw that i was not alone, and MOST of this group shared the same experiences that I did... wow..

thanks to all of you..

-----Original Message-----From: Oliver on Sent: September 19, 2000 3:44 AMTo: pancreatitisegroupsSubject: Re: New member

on 9/16/00 8:29 AM, dbcbabmb at dbcbabmb@... wrote:

Hello...I have just discovered your group. I too, have been diagnosed with pancreatitis at age 38. My first attack was May 31st and I was in the hospital for 6 days. Then I had my gall bladder removed on June 22nd. I suffered another attack of pancreatitis on August 14th, but was able to treat it at home, but it took about a week or more for the pain to ease.-------------------------------------------------------------------------------------------------------------Hi Charlotte! Welcome to a great group of pancreatitis patients, and their family/friends! I'm Henry, and I've just been in this group for a short while, but everyone here is so kind, supportive, and friendly,, that I hope you'll feel at home here, as I have come to feel. I've heard of other folks having pancreatic attacks after their gall bladder was removed, but I don't know what the tie in is. Perhaps, it's because the bile duct, and the pancreatic ducts are so close together in the duodenum? Anyway, are you doing well, or at least better now? It's no fun having this type of pain! Well, once again welcome, and if you need support, you've come to the right place! Have a pain-free day/night! Sincerely, Henry PANCREATITIS SUPPORT NETWORKOnline e-mail groupTo reply to this message hit "reply" or send an e-mail to: PancreatitisegroupsTo subscribe to this e-mail group, simply send an e-mail to: Pancreatitis-subscribeegroups

[Guest guest]

on 9/16/00 8:29 AM, dbcbabmb at dbcbabmb@... wrote:

Hello...I have just discovered your group. I too, have been diagnosed with pancreatitis at age 38. My first attack was May 31st and I was in the hospital for 6 days. Then I had my gall bladder removed on June 22nd. I suffered another attack of pancreatitis on August 14th, but was able to treat it at home, but it took about a week or more for the pain to ease.

-------------------------------------------------------------------------------------------------------------Hi Charlotte! Welcome to a great group of pancreatitis patients, and their family/friends! I'm Henry, and I've just been in this group for a short while, but everyone here is so kind, supportive, and friendly,, that I hope you'll feel at home here, as I have come to feel.

I've heard of other folks having pancreatic attacks after their gall bladder was removed, but I don't know what the tie in is. Perhaps, it's because the bile duct, and the pancreatic ducts are so close together in the duodenum? Anyway, are you doing well, or at least better now? It's no fun having this type of pain!

Well, once again welcome, and if you need support, you've come to the right place! Have a pain-free day/night!

Sincerely,

Henry

[Guest guest]

In a message dated 09/19/2000 1:00:43 AM Eastern Daylight Time,

twilliams@... writes:

<< I only found this group TODAY and just reading

others' stories actually made me cry, as i finally saw that i was not alone,

and MOST of this group shared the same experiences that I did... wow.. >>

Hi !!

I know how you feel!! Before I found groups like these, I thought I was all

alone. I had only heard of pancreatitis one other time in my life before my

diagnosis. I was amazed to find out how many people there were out there

that understood that pain and frustruation that I felt. It is such a relief

to be able to talk about my experiences to someone that knows rather than to

try to explain it to those who don't. I was first diagnosed and had my first

attack in December of 1998. I had pain for like 2 months before they found

out what it was. My first attack was treated at home with IV's and once they

started, the pain was gone in a week and I was able to go back to work and

taking care of my brother who was a severe diabetic and had had his leg

amputated do to it's inability to heal from a break. I was literally killing

myself trying to do it all, but I was his sole caregiver and would have NEVER

let him down if I could help it. Then in July of 1999 I had another attack

and this one put me in the hospital where I went into a coma for 8 weeks at

which time my lungs and kidneys failed. I was placed on paralytics so I am

told because I was fighting them so much. I know I fought because my self

conscious was telling me that I didn't have time to be sick coz my brother

needed me. Anyway, I am sure everyone is sick of hearing my story, so I

apologize for rambling on. Someone had said the other day that they were

going to figure out a way to type their story to keep it and send it to each

new member but they were new to the puter stuff and didn't know how yet. I

am kinda new to all of this myself, but I am going to start figuring out how

I can do that!!! To make a long story short, luckily I woke up, but only to

find that my brother had died two weeks after I went into the coma and my

finace' (EX NOW!!!) had stolen all of my money from my savings account

fraudulently!!!! He got me for around 6000.00 and moved out. I was totally

unable to take care of myself and luckily my best friend came and lived with

me for a while and pretty much saved my life!!!! My pancreatitis was caused

by hereditary high triglycerides. They were elevated to 4000 at that time.

I am still in a constant battle trying to bring them down again and I am on

like 15 meds a day. I have been recently diagnosed diabetic too. YUK

Tell me your story too, I am all ears!!! I am so sorry that you have this

pain. How old are you? I am 35.......too young to live this way that is for

sure!!!

Have a pain free day if possible and I will be waiting to hear back from you.

Feel free to email me personally too anytime!!

Hugs,

[Guest guest]

...actually, I am trying to work up the energy to tell my story in

full...it is just as you said...exhausting to talk about only because

everyone wants to know (or they pretend to) but they do not know anything

about it..so I end up recanting the past 8 months and then feel as if I made

them sorry I ever asked. BUT...I do not feel that way with others that

suffer...so, PLEASE do not apologise, as I GET IT!!

And..I am so so sorry to hear about you...I certainly cannot relate to your

experience, as I never went into a coma, etc..but I can certainly

empathize!! I cannot tell you how sorry I am..really, it sounds just

awful..was there anyone else (family?) that was there for you while you were

down and out?

Oh, you asked..I am 33..and I WILL get myself together and write my story

within the next 48 hours

for the person that wanted to save his story but not send as an

attachment...just save the story in your word documents. but, instead of

attaching as an attachment when you want to send,...minimize the e-mail,

open the document, highlight the entire document (the right click on mouse

does this..keep it held down as you go over the entire document from top to

bottom)..then, when you have highlited the entire thing, take your hand off

the mouse (but do not touch any keys) and go up to " edit " (on IBM it is at

the left top of the screen)..left click and options for edit will come

up...move to " copy " and click...then, go back into the e-mail you are

sending, make sure the cursor is exactly where you want to start, then go up

to " edit " again..this time click on " paste " and your entire story will paste

onto the email (or wherever)...when you go back to the document, you can

just point your mouse anywhere and then click..the highlighting should go

away..then just close it...if you DO accidentally hit a wong key and it

wipes out or erases, do not worry, as when you close the document it will

ask you if you want to save the changes..and then, as they say...just say

" no " ...i hope i did not insult you by the step by step, as i was not sure

how much computer skills you have..so, if this did insult you..i am very

sorry!

Re: New member

In a message dated 09/19/2000 1:00:43 AM Eastern Daylight Time,

twilliams@... writes:

<< I only found this group TODAY and just reading

others' stories actually made me cry, as i finally saw that i was not

alone,

and MOST of this group shared the same experiences that I did... wow.. >>

Hi !!

I know how you feel!! Before I found groups like these, I thought I was all

alone. I had only heard of pancreatitis one other time in my life before my

diagnosis. I was amazed to find out how many people there were out there

that understood that pain and frustruation that I felt. It is such a relief

to be able to talk about my experiences to someone that knows rather than to

try to explain it to those who don't. I was first diagnosed and had my

first

attack in December of 1998. I had pain for like 2 months before they found

out what it was. My first attack was treated at home with IV's and once

they

started, the pain was gone in a week and I was able to go back to work and

taking care of my brother who was a severe diabetic and had had his leg

amputated do to it's inability to heal from a break. I was literally

killing

myself trying to do it all, but I was his sole caregiver and would have

NEVER

let him down if I could help it. Then in July of 1999 I had another attack

and this one put me in the hospital where I went into a coma for 8 weeks at

which time my lungs and kidneys failed. I was placed on paralytics so I am

told because I was fighting them so much. I know I fought because my self

conscious was telling me that I didn't have time to be sick coz my brother

needed me. Anyway, I am sure everyone is sick of hearing my story, so I

apologize for rambling on. Someone had said the other day that they were

going to figure out a way to type their story to keep it and send it to each

new member but they were new to the puter stuff and didn't know how yet. I

am kinda new to all of this myself, but I am going to start figuring out how

I can do that!!! To make a long story short, luckily I woke up, but only to

find that my brother had died two weeks after I went into the coma and my

finace' (EX NOW!!!) had stolen all of my money from my savings account

fraudulently!!!! He got me for around 6000.00 and moved out. I was totally

unable to take care of myself and luckily my best friend came and lived with

me for a while and pretty much saved my life!!!! My pancreatitis was caused

by hereditary high triglycerides. They were elevated to 4000 at that time.

I am still in a constant battle trying to bring them down again and I am on

like 15 meds a day. I have been recently diagnosed diabetic too. YUK

Tell me your story too, I am all ears!!! I am so sorry that you have this

pain. How old are you? I am 35.......too young to live this way that is

for

sure!!!

Have a pain free day if possible and I will be waiting to hear back from

you.

Feel free to email me personally too anytime!!

Hugs,

PANCREATITIS SUPPORT NETWORK

Online e-mail group

To reply to this message hit " reply " or send an e-mail to:

Pancreatitisegroups

To subscribe to this e-mail group, simply send an e-mail to:

Pancreatitis-subscribeegroups

[Guest guest]

My name is Carole and I just joined this group. It's so nice to have people

to talk to who can relate to Pancreatitis.

My problem with my Pancreas started 14 years ago with Acute Pancreatitis and

I developed a cyst on the tail end of my Pancreas. Had surgery but 4 months

ago I found out I have another cyst on my Pancreas. The first CT showed a 4

CM cyst and the last one showed it had grown to 4.7 CM. They also found a

lesion on my liver.

Has anyone in this group ever had this problem? If so, what was done? I'm

on Darvocet for the pain right now. Whenever I had Acute Pancreatitis, my

amylase was extremely high but my doctor told me it's not always high with

Chronic Pancreatitis which really confuses me. I don't drink so alcohol is

not the reason for my condition. I've had " attacks " periodically for years

but now the pain is getting worse. I would appreciate anyone's input.

Thanks and God Bless. Hope you all are doing well!

Carole

[Guest guest]

In a message dated 9/30/00 4:34:36 PM Eastern Daylight Time,

CJWatts88@... writes:

<<

My name is Carole and I just joined this group. It's so nice to have people

to talk to who can relate to Pancreatitis.

My problem with my Pancreas started 14 years ago with Acute Pancreatitis and

I developed a cyst on the tail end of my Pancreas. Had surgery but 4 months

ago I found out I have another cyst on my Pancreas. The first CT showed a 4

CM cyst and the last one showed it had grown to 4.7 CM. They also found a

lesion on my liver.

Has anyone in this group ever had this problem? If so, what was done? I'm

on Darvocet for the pain right now. Whenever I had Acute Pancreatitis, my

amylase was extremely high but my doctor told me it's not always high with

Chronic Pancreatitis which really confuses me. I don't drink so alcohol is

not the reason for my condition. I've had " attacks " periodically for years

but now the pain is getting worse. I would appreciate anyone's input.

Thanks and God Bless. Hope you all are doing well!

Carole >>

Hi Carole, and welcome to the group. I am sorry that you are having

pancreatitis and had to join us. I do not have cyst on my pancreas but there

are others in the group who have had cyst. They will be able to help you

with this more than I can.

I am impressed with your doctor since he said that amalaze doesn't always

have to be high with a pancreatitis attack. Many doctors think that the

amalaze and lipase are not up then the patient is not having an attack.

So many people with pancreatitis do not know the reason they have it. That

is what is so frustrating about this disease among other things.

Carole, it is great that you don't drink alcohol. I don't drink alcohol

either, or eat dairy, spices, or fats, in fact I don't eat anything most of

the time. When I do eat it is maybe a bite. I am on tpn and I am planning

on having a surgery to remove my pancreas and have my islet cells removed

from my pancreas and injected into my liver. If all goes well I should be

able to eat and not be a diabetic. I have pancreas divisum which means that

I was born with an abnormality in the duct of the pancreas.

Stay with us and we will help you all we can. There are quite a few nurses

in this group and they will be able to help you.

Where do you live? We are going to have a pancreatitis symposium in Nov. in

Indianapolis. It should be very educating. Take care, Shirley

[Guest guest]

Hi glenn,

my name is Ron and I know what you mean when you say the pain was

unbelievable.

I was out fishing one Saturday night with my buddies in 1996 and I had some

pain in my side I didn't know what it was so I told my self if it wasn't

better by Monday I would go to the doctor. I woke up Sunday morning with the

worst pain I had ever felt. I was in the fetal position until the paramedics

arrived and took me to the hospital where I spent about a week. I was flown

by life flight to the Ohio State University hospital where I was diagnosed

with severe acute pancreatitis the did several surgeries, the first one they

did they had to stop because I wasn't stable enough for them to continue. I

had 3/4 of my pancreas removed. I was on a vent for 12 weeks, I also had an

infection in my blood, I had 12 week's of dialysis because my kidney's shut

down, I spent about 5 months in the hospital with several drains and then I

developed an infection around my spleen so I had to go back and have that

removed plus all of the reconstructive surgery they had to do. My advise

would be to go some where that is familiar with this problem I prefer OSU

they were great. good luck!