Re: Help - my sister is very sick

From: Rosemary F (Mrf413@aol.com)
Tue May 21 13:22:13 2002


At Tue, 21 May 2002, Rosemary F wrote: >Thank you for responding to my email. It is very distressing for me as a "healthy" woman to watch my sister go through this. Unfortunately, my sister was never able to have children as she had her hystorectomy at a very early age. I know she's been mishandled by her doctors but I believe she always wanted to believe her doctors were doing the "right" thing. In any event, for me, finding this website has been an eye-opener. I never realized my sister was not alone and what a real medical issue this adhesiolysis is. My sister's one doctor has described her insides as "a plate of spagetti someone threw at a wall."

In any event, after she gets threw this bout of hospitalization, I would like to bring her to one of your support groups. My sister lives in Staten Island and I live in New Jersey but I'm not opposed to joining her. I know she needs someone to "push" her. Could you give me more information about where the supports groups are and when you meet. Also, my sister has been on antidepressents for many years - with NO pain medication. Her problem now is she's unable to eat or even drink anything without vomitting. She called me early this morning to say she vomitted most of the night. The problem is her doctor may want to release her. I don't see how he could possibly send home such a sick person! I could understand if she could keep liquids down but she can't even do that. I've called her doctor to see if possibly I could intervene.....I'm waiting for a call back. Thanks again for your kind words and for the information I've already received. I will continue my research.....thanks again.

Rosemary >

>At Tue, 21 May 2002, cathy:- wrote:
>>
>>Rosemary, the surgeon who is probably the most skilled laporascopic
>>surgeon in the US practices out of St. Vincents in lower Manhatten. His
>>name is Harry Reich. If there is anyone in the world who can go in
>>there and clear the bowel obstruction(s) without doing any more damage
>>than is already there, Dr. Reich is it. His group of surgeons has a
>>web site -- http://www.adlap.com . Besides all of the info for getting
>>in touch with them, the site has excellent articles about adhesions and
>>laporoscopy.
>>
>>You need to be aware that they do not take insurance. This means that
>>your sister would have to pay for all of the treatment out of pocket and
>>then get her insurance to reimburse her. Be aware that the typical
>>insurance reimbursement for adhesiolysis (the often grueling 8-12-hour
>>surgery to painstakingly remove adhesions) is like $2000-$3000, while
>>the surgery costs like $20,000-$40,000. In order to pay the difference,
>>your sister will need to pay it out of her own money, have fundraisers,
>>take legal action against the insurance company, sue the surgeons who
>>have gotten her into this position for malpractice, etc. If your sister
>>were to have surgery simply to clear to obstruction without trying to
>>clean out the adhesions, then it's very possible that the insurance
>>company would pay the full cost of that surgery -- that's something I
>>have no real feel for.
>>
>>When your sister gets over this immediate crisis then what she needs is
>>a referral to a pain management clinic. These are multi-disciplinary
>>clinics run by anesthesiologists who are not worried about curing you of
>>whatever is causing the pain, they are only concerned with relieving the
>>pain. They vary widely in quality and general sensitivity, though, so
>>you really need to ask around the staff at the hospital, and if possible
>>talk to other patients to get the "inside scoop" on where the best
>>places are. For example, your sister is depressed because she is in
>>intractable pain and the medical professionals are refusing to treat it.
>>The depression will magnify her experience of pain. There are some
>>idiot doctors out there who think that in her situation an
>>anti-depressant is all she needs. Well if that is her condition, then
>>she needs effective pain relief AND she needs an effective
>>anti-depressant in order to relieve BOTH the pain AND the depression. If
>>she only gets one and not the other, she won't get relief from either
>>the pain or the depression... The advantage of a good pain clinic is
>>that there are both anesthesiologists and psychologists on the staff.
>>
>>And have your sister come here. It is a wonderful supportive group of
>>people who will listen to her during her ups and downs, and are chock
>>full of useful information and experience of what works and what
>>doesn't.
>>
>>At Mon, 20 May 2002, Rosemary F wrote:
>>>
>>>I wouldn't even know where to begin. My younger sister who is now 43
>>>years old needs help. She suffers with very, very severe adhesions. She
>>>has undergone many, many surgeries (since she was 16 years old) starting
>>>with ovarian cysts - leading to endrometrious, leading to a
>>>hysterectomy, leading to many laproscopic surgeries. She is now in the
>>>hospital with intestinal blockages caused from these adhesions. She has
>>>lost a lot of weight, has almost constant diarrhea, and is vomitting.
>>>She also has severe abdominal pain. Her current physician does not want
>>>to operate as he feels she is too "hot" to open up right now. He wants
>>>to stretch the intestines and then possibly do surgery at a later date.
>>>Unfortunately, my sister has gone this route before with absolutely no
>>>relief. To say that my sister is extremely depressed is an
>>>understatement. She lives her life in constant pain. Her OB/GYN does
>>>not want to treat her and also told her that she would be very hard
>>>pressed to find another physician who would take her case on. The
>>>adhesions have touched her bowels, intestines, bladder - basically every
>>>organ in her pelvis.
>>>
>>>The reason I'm writing is to ask if anyone might be able to recommend a
>>>doctor in New York City or if someone could give some advice as to what
>>>we can do. My sister is at the end of her ropes and has even said she
>>>doesn't want to live this way - she's tired - and frankly I don't blame
>>>her.
>>>
>>>Can anyone help??
>>
>>--
>>cathy :-)
>

--
Thank you for responding to my email. It is very distressing for me as a "healthy" woman to watch my sister go through this. Unfortunately, my sister was never able to have children as she had her hystorectomy at a very early age. I know she's been mishandled by her doctors but I believe she always wanted to believe her doctors were doing the "right" thing. In any event, for me, finding this website has been an eye-opener. I never realized my sister was not alone and what a real medical issue this adhesiolysis is. My sister's one doctor has described her insides as "a plate of spagetti someone threw at a wall."

In any event, after she gets threw this bout of hospitalization, I would like to bring her to one of your support groups. My sister lives in Staten Island and I live in New Jersey but I'm not opposed to joining her. I know she needs someone to "push" her. Could you give me more information about where the supports groups are and when you meet. Also, my sister has been on antidepressents for many years - with NO pain medication. Her problem now is she's unable to eat or even drink anything without vomitting. She called me early this morning to say she vomitted most of the night. The problem is her doctor may want to release her. I don't see how he could possibly send home such a sick person! I could understand if she could keep liquids down but she can't even do that. I've called her doctor to see if possibly I could intervene.....I'm waiting for a call back. Thanks again for your kind words and for the information I've already received. I will continue my research.....thanks again.

Rosemary >


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