Posted by Terry Gilmour I know this is not making much sense to you without the whole picture, but I just wanted to reassure you that what your husband says or does while on the vent and under those drugs is NOT necessarily what you should expect when he recovers. Though the withdrawal process can be a bit distressing too. It truly is a "withdrawal from drug addiction" process. You are welcome to e-mail me if you need encouragement or just want to have someone to talk to. Good luck with this endeavor and God Bless your entire family. Terry --Previous Message--
on 6/9/2004, 8:10 pm, in reply to "Re: International Legionella Rehabilitation Survey"
209.221.40.30
Thea, don't be too discouraged. I know it must be very scary and discouraging for you as it was for my family during my hospitalization, but confusion, delirium, psychosis, etc. are all common during the ventilator process which includes drugs that would confuse any human. Also, after the drugs you should expect that he may say the most unbelievably ridiculous things because of his reaction to coming off the drugs. Looking back, I feel so sorry for what my family went through (and because they really didn't understand why I was acting like such an idiot). My mother, who was with me at the hospital, kept telling the doctors that I didn't even know where I was. She thought I was completely crazy. And because my father was at home taking care of my daughter and not there at the time, I kept saying my father had "stolen" my daughter and left the state with her and wouldn't allow her to come see me. I also kept saying that my dad and "they" (who I guess was everyone) were trying to take away my daughter from me because I was in the hospital and incapacitated.
: My husband is currently in the hospital, on a
: ventilator, with the diagnosis of
: Legionnaires. This is day 14 that he is in
: ICU and it is completely overwhelming and
: distressing to me, to our family. We know so
: little about the disease and I'm searching on
: the internet as much as I can when not at his
: side at the hospital. He is a young 56 year
: old, was very healthy and athletic with no
: pre-existing condition before this struck
: him...which is still a mystery as to how and
: where. As he's been slipping in and out of
: awareness these past 2 weeks he has seemed to
: know who I was and whenever I mentioned our 5
: year daughter I could see emotion on his face
: and he would often have some tears. I'm
: particularly distressed today because,
: although he was more alert and aware than
: he's been since ICU, he did not know who I
: was or who our daughter is when I showed him
: photos....shook his head no when I asked him
: if he knew who she was. Has anyone out there
: had any experience with a legionnaires family
: member, or themselves, that completely
: forgets who their family members are? I came
: across this site in a google search and
: thought I could find some help in coping as I
: endure this dreadful situation. Kindly, Thea
: --Previous Message--
: : Yes to the confusion and short term memory
: loss. And even some long term memory loss.
: I had LD, ARDS and stroke while on
: ventilator. 4 weeks on vent in coma. It's
: been 2 and a half years and I still have
: problems with both confusion and memory loss.
: Terry
: Previous Message--
: I have a question about the effects of LD on
: short term memory & confusion. My
: husband is having some problems with both.
: The pnuemonia caused ARDS (acute respiratory
: distress syndrome) & I have read short
: term memory & confusion can result from
: ARDS & persist for awhile. Was wondering
: if anyone else experienced this problems
: after legionairres disease.
: --Previous Message--
: : I have specific questions about the affects
: of LD on vision and/or eye problems. I did
: suffer a stroke while on ventilator, and the
: stroke could have caused the vision problems,
: but my question concerns whether LD could
: have also contributed or could have caused
: lasting problems with vision and
: weakeness/tiredness of eyes.
: Thank you,
: Terry
: --Previous Message--
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: International Legionella Rehabilitation
: Survey
:
:
:
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: There is a very little literature or
: information
: on the subject of techniques for surviving
: and coping with Legionnaires disease and even
: less money to fund it.
: IF there is sufficient interest, I propose to
: conduct an international survey to discover
: more information about surviving this
: dreadful disease.
: I will post the results for everyone in the
: group now and future members which will
: hopefully improve your quality of life.
: Presently, Doctors all over the world don't
: have
: much data to make recommendations for their
: patients, hopefully this survey will change
: that
: situation.
: I am still formulating my ideas, so feel free
: to
: comments, express your needs or other
: requirements, etc. No real names will appear
: in
: the results, and it goes with saying all
: information will remain confidential.
: Only LD survivors know the real truth and
: have the experience. I am hoping this survey
: will discover useful hints and tips from
: various parts of the world that can be shared
: for the benefit of everyone.
: Of course, if nobody participates there will
: be
: no results. I am an engineer by trade, so I
: will buy the software, math is no problem,
: however once I have assessed the response I
: may try to encourage a university or other
: institute to help, which MAY require that
: institute reviewing copies of your medical
: records (sent at your own expense).
: Since there is no money (except mine) and my
: spare time, the survey will be emailed. It
: will take time to compile, conduct and
: report, so please don't expect results
: overnight.
: The survey will probably comprise a simple
: questionnaire asking basic questions about
: health
: before and after, medications, exercise,
: diet, etc.
: Since this is a low cost survey, I can't
: accept
: a qualified acceptance; by that I mean a
: person
: that wants to do bits of the survey.
: Qualified
: acceptances would be classed as No, I simply
: dont have the resources to handle too many
: variables.
: Please send general questions to the group
: or my private email address: deepcastle (at)
: hotmail.com
: Please, Please Please use the title:
: International Legionella Rehabilitation
: Survey (ILRS)
: Tell your doctors, tell your consultants,
: tell anyone that will listen 
: I encourage you to participate - Hoping for
: overwhelming response.
: Regards,
: John Herbert
: PS: Dont lose this chance to make a
: difference.
:
: : :
: :
: