Re: Re Karla

From: Robyne Hinks (rhinks@eisa.net.au)
Wed Feb 23 02:57:12 2000


Dear Bernie and Beverley I would like to add my prayers and best wishes for Karla.I too have lost my bladder but they biult a new one out of my right colon.I did have a choice of a stoma or new bladder and after much deliberation and counselling elected for the new bladder.It has not come cheaply,it has caused massive problems such as severe adhesions which cause bowel obstructions every few weeks. A lot clear of thier own accord (with massive pain) but one of them strangled the ureter on the left side forcing me to lose a kidneyas well.They have told me that I have an eighty percent chance of dying with more surgery because of the massive adhesions so every bowel abstruction comes terror but this is nothing compared with Karla.I dont know how she keeps sane.She is so brave.I would like to know about this Dr. Reich as Tom ( my husband) is serious about going overseas to get help for me.He is really finding it difficult to handle the pain that I have all the time especially when it gets so bad I beg them to let me die.I was wondering if it were better to go somewhere they have intergel or seeing Dr Reich.Please let me know what you think.Thanking you Robyne.

>----- Original Message -----
From: Bernie and Beverly Doucette <bnb@cybrzn.com> To: Multiple recipients of list ADHESIONS <adhesions@forum.obgyn.net> Sent: Wednesday, 23 February 2000 1:01 Subject: Re: Re Karla

> To all: Karla is in great need of prayers. We are having a difficult time
> finding a surgical team to meet her medical needs. Karla not only suffers
> the pain of massive adhesions as a result of 26 laporotomy's, but having
> lost her urinary bladder to a very poor adhesiolysis she now has to
urinate > through a stoma in what is left of her abdominal wall. I say," what is
left > of her abdominal wall, " because Karla has less then 1/4 of the rectus
> muscle left ( the abdominal muscle wall we can tighten while doing sit ups
> etc...when we could do sit ups that is!! but I use that as an example for
> you to understand the magnitude of her loss .) This is due to the
multiple > LAPOROTOMY"S that she had. Because of the extensive incisions and
constant > relocating of her urinary stoma, Karla's intestines have herniated through
> her rectus muscle numorous times leaving that muscle tissue so weak that
it > eventually wore away leaving her intestines to push up against her skin.
If > you think that a surgeon is hesitent on treating you because of adhesions,
> then you can imagine why we are having difficulty finding a team of
surgeons > to help Karla!! We are in desperate need of a surgeon who deals with
> adhesions, a plastic surgeon to reconstruct a prosthetic abdoman and a
> urologist for the stoma...even Dr. Reich was not able to secure a team of
> specialists to take on the first two surgery's as he felt he would be able
> to mange the adhesiolysis! You can imagine her disapointment on hearing
> that news. A possible solution so near yet so far and then a no go..again.
> We have tried the John Hopkins medical center in Boston, as they are known
> to be hernia specialists.. she was denied due to the adhesional
involvement. > They felt she was doomed to failure before she even started! What a
crusher! >
> Karla's most recent hernia is the size of a football and again is located
> around her stoma. This hernia causes her stoma to leak urine constantly as
> she cannot place her collection bag on properly due to the massive hernia,
> this causes a great deal of embarrasment due to the mess and odor, and
has > caused Karla to remain in her home and alone most of the time. We have
been > able to convince her to come over and spend as much time as she likes at
our > residence. She has even gone out to eat with us...to us, Karla is just
> another special person, no matter how she is, and she must feel that as
she > has elected to visit us daily, when not in the hospital.
>
> Karla was in the intensive care unit last week battling a very high blood
> pressure that resulted in a massive nose bleed. When a person 's blood
> pressure gets to such a dangerious level, the body will start to bleed
> through the nose. Karla suffers a high blood pressure due to chronic pain,
> if you are not firmiliar with this connection, chronic pain will increase
a > persons blood pressure as the body is trying to combat that pain and being
> it is a never ending process, your blood pressure will be up.
>
> I cannot stress enough today how ill our dear Karla is. Please pray
that > she be blessed with strength and hope, and that we, who love and care for
> her, will accept whatever the future holds for her. Again, we see the
> magnitude of what this disease can do to a person, the next time someone
> looks at you and says, " you don't look sick, " be patient with them, be
> happy that we don't look sick and gently, take a moment to think of KARLA
> and let that comment blow away with the wind...as we all know the truth,
and > no matter what anyone else thinks or says, it doesn't change that fact of
> what ARD is....
>
> Thank you God for letting us have each other to draw strength and support
> from...and isn't it ironic that it is those who are suffering this
> horrendous disease that we turn to for that support...those who suffer
> reaching out to those who are suffering!!
>
> I will keep you posted as to Karla's health, and I want you all to know
how > excited and appreciated she has felt since coming to this society, she has
> been accepted by the IAS just as she is...and she is a saint in my eyes!!
>
> God speed be with us all.
>
> Kathy of Florida is also in need of prayers as she undergoes her
> adhesiolysis with Dr. Reich on Thursday, Feb. 24th.
>
> We also will be seeing our first " male " ARD sufferer sit in consultation
> with Dr. Reich next week..and I am hoping to hear that Dr. Reich will
elect > to break precedent and perform an adhesiolysis on him!! And if you don't
> think getting THAT appointment was fun..think again! But it worked!! :-)
>
> I would like to add one last point here..if you think that reaching DR.
> Reich for an adheiolysis procedure is out of your means financialy, please
> contact me for particulars on that..Dr. Reich is the greatest laporoscopic
> surgeon in the world and he is capable of performing an adhesiolysis
> procedure better then anyone else. Just when you start to hear that your
> surgeon cannot do this or that or must perform a laporotony to have a
> succesful adhesiolysis....think again! I have talked with ARD patients who
> were told they would have to have a laporotomy in order for the surgeon to
> use berriers, or to lyse adhesions in difficult locations within the
> abdoman/pelvis, and Dr. Reich not only completed the same surgery through
> the laporoscopic method, but with extremely successful results! So
please, > at least look in to his procedure...give yourself that chance. And keep in
> mind that there are have notbeen any berriers that have proven successful
to > date , so why would a surgeon want to perform a laporotomy to wrap a
berrier > around organs if there is strong evidence showing that berriers do not
work! > You must be informed of this, you must research what I have just shared,
and > you must take responsibility for knowing as much as you can before you
allow > any procedure to be done on you in relationship to adhesions! You must
ask > your surgeon for any previous results by performing the same procedure on
> you...what has the past experiences proven by the surgical technique your
> surgeon has recommended for you? Ask questions, be educated....my God,
take > responsibility for you own medical care!!
>
> In friendship
> Beverly

>> ----- Original Message -----
> From: toni welsh <twelsh1@hotmail.com>
> To: Multiple recipients of list ADHESIONS <adhesions@forum.obgyn.net>
> Sent: Tuesday, February 22, 2000 6:44 AM
> Subject: Re Karla
>
> > Thank you so much for letting us know about Karla, I hope she is doing
> > okay. I will worry about her, but will keep her in my prayers. Hope
> > all goes well for her.
> >
> > Sincerely,
> > Toni
> >
>


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