[MugCanDoIt]

My family is having a delima and we need help. I dont know what else to do. Can you guys suggest something? Heres the deal:

My sister had gastric bypass surgery in July 2007. She never has been healthy since. She had something happen a month or two after the surgery where they had to go back in and use a balloon to stretch an opening somewhere to allow food into the bowl (I think that is what happened). Well that worked for about 2 weeks, then ever since it has been hard for her to eat.

She doesnt want to eat because she throws up and has pain. She also cant drink water because she says it lays too heavy on her stomache and makes her nauseous. So heres where it gets bad:

She is currently in the hospital right now with SEVERE MALNUTRITION, and CANT WALK. Her hair is falling out, she cant pee, or have a BM. She cant even walk, unless she uses a walker and then she says it is so very very painful. I have been told if she doesnt get help she will DIE.

Her surgeon has refused to see her anymore due to her missing so many appointments. The place where she had the surgery is in TN, about two to three hours away. She couldnt make it to her appts after the surgery because of how sick she was, and the fact that we couldnt get her there due to where we live. So they have completely written her off, and now she is dying.

The thing is, since this surgion has dropped her, nobody will take her to fix what is wrong with her insides post surgery. The hospital she is in now does not perform bariatric surgery. They have contacted the surgeon who did the initial operation and he said NO again. So they said they were trying to contact a surgion in another city, but that was early this week and we havent heard anything, so that tell us they said NO.

What the heck do we do? NOBODY WILL DO SURGER ON HER TO FIX HER PROBLEM!!!! We cant sit back and just let her deteriorate and get sicker and sicker and just die. I even called neighboring cities to see if they would see her, just for an appt, and was told she would have to see the surgion who performed the surgery. Well he is an **shole and wont see her anymore.

What the heck do we do? Please somebody help us. What do we do?

[midwife]

There should be a patient advocate and a chief of surgery or medicine at your hospital. Demand to see them. There should be a plan of care that makes sense to you guys. Is there a teaching hospital nearby?

[harrismm]

Contact hospital administration immediately.Why are they keeping her inpatient if they are not willing to treat her?This makes no sense.If something can be done to improve her situation, I am not sure that the surgeon can refuse to perform the surgery.Unless she is a surgical risk for some reason?WOW.This seems really strange to me.

[Justwant2Bhealthy]

1) you have to raise a stink, a loud one ... because it's people who raise a stink that get heard and get action. It's too bad this has gone on so long; but you are her only advocate right now. Just do it!

2) ask to talk to the 'ATTENDING' physician: that is the doctor who is taking care of her at the hospital she is in now; and there is one, there is always one.

3) Ask her attending nurse and/or physician if she can be put on IV to help her get the nutrients she needs to live. Do they have her on IV now? Push them and bug them for it now!

4) Is there a nurse that you might get to have compassion for her situation; ask to speak to the attending nurse on her floor, and plead with her to tell you what you might do to help your sister.

5) DEMAND is the key word here; you have to demand care; demand action; demand help; don't take 'no' for an answer. Go there and pester them daily, and on the phone -- call them every day until you get action. Eventually, they will do something because they don't want to be bugged all the time. Also, tell them you will go public, if they don't do something for her now ... see #6.

6) If you get no action, contact the media; the papers where her surgeon lives and where she is now. It's drastic, but you can't wait until she dies.

7) we will be praying for her and your family, as you try to help her ... and if we think of anything else, I'll come back to share.

[mypunkrockromance]

I agree you need to contact the media and tell them about the treatment of your sister.

I work in the media and TRUST ME when I say, the hospital is a business and no business wants that bad press. I would go right to your local television stations, they like the ratings of these kinds of stories sad to say.

And if they threaten slander, just tell them if it's the truth and completely factual information then it's not slander!

[CountingDown]

Good advice given above! We will be keeping your sister and your family in our prayers.

[kaplods]

I would agree that going to the media (television, radio, newspaper...) both where your sister lives and where she had the surgery, may get you results, either in shaming the uncooperative medical professionals into helping, or in bringing the case to the attention of professionals willing to help.

Good Luck, and God Bless.

[KforKitty]

Originally Posted by harrismm

Contact hospital administration immediately.Why are they keeping her inpatient if they are not willing to treat her?This makes no sense.If something can be done to improve her situation, I am not sure that the surgeon can refuse to perform the surgery.Unless she is a surgical risk for some reason?WOW.This seems really strange to me.

I agree that the surgeon cannot refuse to perform lifesaving surgery unless there's a valid clinical reason for not doing so. From your posts it seems as though your sister has not followed the proper aftercare plan so whilst he may be reluctant he surely cannot see her die. Speak to the Patient Services/Advocate at the original hospital and threaten media involvement unless action is taken.

Kitty

[ronni62]

I think you've received good advice from everyone above, but I would also add that you might not want the original surgeon to do any further work on your sister. If he did something wrong in the first place, he will be trying to cover his butt if he goes in again and it may not benefit your sister. Try to find a surgeon not affiliated with the original and completely explain to him/her that you really can't get the original surgeon to do anything and can't trust him anyway. We found out the hard way that some doctors will do anything to keep people from knowing how they messed up.

Your sister and your family are in my prayers.

[MugCanDoIt]

Im gonna print this out and try everyones suggestions. I will keep you posted if any new info comes up with her. Thanks everyone.......I didnt know where else to turn.

[MugCanDoIt]

UPDATE!!

i just got word this morning that a surgeon at the University of Louisville Hospital is going to perform her surgery to hopefully fix her problem.

We are exstatic!!

Thanks everybody for your help and concern

[jiffypop]

thank goodness!!!! Louisville will take good care of her -

it's REALLY REALLY important that she take care of herself after this is fixed [and it WILL be fixed!!!!] - She's gotta figure out how to eat and drink, and get back on a healthy track.

many prayers for all of you, darlin!!!!

[bargoo]

Great news!

[MugCanDoIt]

Originally Posted by jiffypop

thank goodness!!!! Louisville will take good care of her -

it's REALLY REALLY important that she take care of herself after this is fixed [and it WILL be fixed!!!!] - She's gotta figure out how to eat and drink, and get back on a healthy track.

many prayers for all of you, darlin!!!!

I know...she just has to reach down inside her and find the strength to make it. She has to want to get better, and right now I dont see that in her. Maybe if she starts to feel some better, the "want" will be there. I have decided I am going to push her to get out of bed every single day.

See she cant walk right now....a dr has told her the neuropothy in her feet causing her the severe pain could or could not go away. I hope she doesnt get it in her head that it WONT go away and just give up. Besides, some people who have had accidents have to learn to walk again, in certain circumstances, so why couldnt she? She has to be pushed to do it,, whether it hurts or not. She has lost muscle in her legs and feet due to malnutrition. She has lost 180 lbs since July 2008. Thats only 7months. I guess her body ate up her muscles instead of losing fat, plus the inactivity for so long did damage too.

I have to keep telling myself "One step at a time" but the fact that she cant walk is really really bugging me. What if it is permanent? What if she cant find the strength to make herself do physical therapy? The thought of my sister in a wheelchair just makes me want to run screaming. And all so she can lose weight. I just have to make myself stop worrying for now and focus on one step at a time. Its hard to do that, especially when she cant drive herself to appointments. I work full time, and have already told my boss I will be needing a personal day coming up, when they schedule her surgery two hours away. Which is ok. but there will be follow up appointments I am sure. My mom is disabled and cant drive her there, and basicly there is no body else. So..........................one step at a time and God will see us through this.

Thanks again everyone who responded.

[kaplods]

Have you talked to her doctors about whether it's appropriate for her to attempt to be active, and what activities are safe and which precautions she should take if she's going to be active before the repair surgery. I think you need to make sure, by talking to her doctors (including the new surgeon) before deciding you're going to push her to get out of bed every day. Unless you're trained in PT, you could make her situation worse, not better.
After the surgery, you'll have to ask the doctors the same questions, what can and should she be doing, and what precautions against injury should be taken.


I disagree that she needs to be pushed whether it hurts or not - a trained physical therapist or physican should make that that determination, based on her condition.

Neuropathy of the feet can be extremely dangerous. Because it isn't just pain, it's also lack of feeling. I herniated a disk several years ago, and the spinal damage caused neuropathy. On one hand, my leg felt like someone had poured gasoline inside and out, and lit my leg on fire. On the other hand, I had absolutely no feeling (to the touch) on my legs and feet below the knee. So, while it felt like it was on fire, I could prick myself with a pin and not feel the pain of the prick. The neurologist told me that some of the nerve damage would heal, but that anything that wasn't healed within two years, would likely be permanent. It did take two years to get most of the neuropathy to disappear (I have some permanent damage left, but luckily only on the top of the left foot - it's a permanent pins and needles feeling). If I stll had it on the bottom of my feet, I'd have to be much more careful about foot care and checking my feet for signs of wound or infection. I still check my feet almost daily (I sometimes forget), but at least I don't have to check several times a day to make sure there's no undetected damage that could then infect and cause serious health problems.

While the neuropathy was healing, especially the first year, I had to be extremely careful about foot care, and especially walking, because if a little bit of stone (barely larger than a grain of sand) got in my shoe, it could tear up the bottom of my foot without my knowing it. If the shoe or sock didn't fit just right, even the seam on a sock could cause blisters and wounds, that I didn't feel while they were being made, because of the weird way in which neuropathy causes pain and lack of feeling in the same area.

So, if you're going to push your sister to get out of bed and move each day, be sure you also have her check her feet, especially the the bottoms and anywhere her shoe/sock might rub. If she can't do it herself, then you might have to do it for her.

Swimming would probably be ideal (again, not before checking with her doctor), because the risk of injury is generally far less.

I know you want to help, but you've got to make sure you do it in a way that's mentally and physically in her best interest, and pushing her may or may not be helpful. Yes, many people do learn to work through pain to recover mobility - and many people also injure themselves in the process if they don't take the necessary precautions. Pushing her might be the right thing to do, but it also might be detrimental mentally or physically - talk to her medical team before deciding you think you know what she needs.