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Melissa Update, Part 5, Thurs Jan 25


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Oh, if only all of your good wishes could have worked. You are all so amazing. And, yes, Lauren, we are her cheerleaders! I always tell everyone I've got the pom poms in a color of their choice, just don't expect me to be jumping up and down too much (or at all for that matter!)

Anyways, in all seriousness...

Melissa's appt. today was cancelled and not rescheduled.

I logged on here really quickly before bed and need to hit the hay....but wanted you all to be up to date on what was going on...if Karen or Kristen want to chime in with more details, please do!

The doctor (who she has seen before) did not feel that there was anything he could do for her. Same thing she heard from University Hospitals in Cleveland.

Her team of doctors is working so hard for her at Toledo, but it seems they cannot find a doctor who has a clue about how to deal with what she has going on.

She is feeling frustrated and abandoned by the doctors at the other hospitals. She's very scared what will happen as soon as they take her off of the antibiotics and antifungals.

Tomorrow they may try doing feeding through her nose...rather than all TPN....but don't know if she will be able to tolerate it.

ON BEHALF OF MELISSA. I want to thank all of you for your continued prayers and support. Also, thank you for the cards you are sending. They matter so much (believe me, I know this on a level from when you all did this for me after my surgery).

This is an amazing forum we have. We are truly blessed.

Please keep your prayers and thoughts coming to Melissa...she's got a long and hard road ahead full of uncertainty and right now, fear.

Emily

P.S. I decided to start a new thread as the other one was getting quite long!!!!!!!! :blink:

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Emily, thank you for the update. How discouraging! I belong to a gastroparesis support group (that Melissa used to be active on) and one of the women there had something very similiar going on. I think they eventually figured out that the bacteria was leaking through her small intestine via a tiny hole in her liver and very effectively (and dangerously) spread thoughout her body. I believe that woman was treated at a teaching hospital in WI. I will E-mail her and see WHERE she was treated and if she has any "pearls of wisdom" to pass on to Melissa. In the meantime, please pass on my continued love and support. I'm praying hard and KNOW Melissa will get through this.

Big Hugs-

Julie

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Dear Emily,

How disappointing for Melissa! For what it's worth, please ask Melissa to see what her doctors think about the treatment at Georgetown University Hospital.

According to their website:

The Center for Intestinal Care and Transplant at Georgetown University Hospital, the only program in the Nation?s capital and one of only a handful of Medicare-approved centers nationwide, offers new and successful surgical and medical options for adults and children suffering from disabling and life-threatening intestinal disorders and liver disease. Once considered experimental, intestinal transplantation is now an important surgical therapy. Some of the most common disorders treated at the Center for Intestinal Care and Transplant include; Short Gut Syndromes, Malabsorption Syndromes, Motility Disorders, and Tumors of the Intestinal Mesentery.

The key to our success is evaluating and treating patients before the onset of life-threatening Total Parenteral Nutrition (TPN) complications, such liver failure. Georgetown?s team of specialists brings years of experience to this program and together, they have achieved among the highest success rates for intestinal transplantation in the country. However, not all patients on TPN or with TPN complications are candidates for an intestinal transplant. The team offers an extensive evaluation process to determine the most appropriate therapy, which is selected from a wide range of options that are available for both adults and children. Through Georgetown, patients have access to:

management of long-term parenteral nutrition

intestinal rehabilitation for short bowel syndrome

remedial surgery for short bowel syndrome or functional intestinal disorders

isolated intestinal transplants

isolated liver transplants

combined liver-intestinal transplants

multi-visceral transplants involving not only the intestine and liver, but also the stomach, pancreas and/or kidneys

management of complex liver disorders

surgery for liver tumors or portal hypertension .

From their website I also note that they treat cases of intestinal failure (i.e., because of lack of motility) caused by visceral neuropathy.

Anyway, I am so concerned and worried about Melissa. Melissa, I wish I could be with you to provide you with comfort and support.

Lois

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Good luck Melissa! I'm praying for you.

While I don't actually *know* you, your posts reveal somebody with such a fabulous spirit and grace. I can't imagine what you're going through, and I don't know how you're doing it- but I do know that, in the process of living your life, you're setting a great example and giving the rest of us hope! It's proof that angels can swim as well as fly. :)

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emily, you are absolutely right: this IS an amazing forum. now we even start trying to help melissa find doctors who could possibly take care of her!!! i feel so very connected to all of you around here, it makes SUCH a difference for me to have all you guys to help eachother out and care about eachother!!!

now melissa, i think about you every day and wish there was more i could do. i will keep thinking about you and sending good thoughts in the hope that one of these days your doctors will find out. and of course: i keep sending cards so that you know (and i know that you do, just wanted to tell you again) that we care about you VERY much. if only we could use the harry potter stuff (of course forgotten the word, sorry :) )

to fly over and come visit you!!!

love,

corina :D

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So sorry to hear that the appointment was cancelled. I, too, wish there was something I could do for Melissa. I am SO glad that there are others here who know more and can offer suggestions. Maybe her doctors could at least get some phone advice from one of these centers for the time being. Feel better soon, Melissa.

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I'm so sorry to hear that Melissa's appointment was cancelled. I hope that the doctors can find a place to send her that will give her lots of help. Thank you for letting us know what is going on, Emily.

Melissa, I'm am still sending my love and prayers your way. I will pray for wisdom for your doctors, and strength for you.

Rachel

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Melissa,

We're all still with you...fighting this seemingly unending fight...may you find some comfort soon!! As always sending thoughts and prayers to you, your family, and your doctors...

Much love,

Michele

Em,

Thanks for your continued dedication to all the updates...what a wonderful friend you are! :)

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Wow!

Thank you all and Poohbear for tips to doctors....

Julie, I think that Melissa may know the woman you are talking about? Is her name Carissa or something similar? That would be a great help b/c she was trying to fidn that doctor. There is one a Pittsburgh (which Poohbear found, and I think that Melissa remembered a Pittsburgh doctor working with one of the girls with a similar situation)....

Thank you all for your help and your problem solving! :) Without this board I would NEVER have figured out so many things that were going on with me.

Anyways, quick note to: NINA, JANEEYRE AND KAREN.

Nina--this should say update 5, note 4....sorry! I was so tired last night, but when I saw all the posts to Melissa I had to update before I went to bed.

Janeyre or Karen--I'm swamped with appts. and low on energy....I'll try to give Melissa a quick call right now, but if I can't get a hold of her, can one of you call her and read her this info????? I feel like it needs to get to her ASAP! (Pooh, called last night already with the name of the doc you had, but haven't caleld about the article, just got it now)

Thanks, let me know!

Sorry to be so short, I gotta get ready myself for an appt...

Love, Em

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Holy cow Nina! That was fast!

Okay, Karen and Kristen...got a hold of Melissa and read her the scoop...so no worries.

Julie, email me if you would like to correspond that way and I will pass it on....I told her about your person.

Pooh...she called the person at Pitt and a I let her know about the article.

Okay, gotta scoot....but YOU GALS ROCK!

Em

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I am very disappointed Melissa is still in limbo but also think it's great how others are brainstorming to TRY and help the situation.

Still praying and hoping

Soph

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You guys are awesome with your help to Melissa. She is blessed to have such a group of people who care so much--and I know how much her family cares, they are such troopers. I know this has to be a very trying time for her parents.

Melissa remains in my thoughts and prayers.

Maxine :0)

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Melissa,

You will be in my thoughts and prayers. Sorry I am just getting to this, I just got out of the hospital on wedesday. You are a fightrt, and I look up to you, I hope you find a doctor, and hosptial to take you. I am wishing you the best!

Amy

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I'm hoping melissa gets the help she needs soon to figure out what is causing all her infections....

Melissa, hang in there, we are all pulling for you to get better....

Jacquie

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Melissa, I can't believe this is all happening to you...I want to light a fire under someone...anyone... there has to be some place that can help? OY! I hope you're okay and I'm thinking of you. Hugs.

Nina

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Hi Melissa,

I hope you're feeling better soon. Take lots of care- we miss you!!! So does your fishbowl. ;) I'm sending lots of love and hugs and happy thoughts. :)

Love,

Megan

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Melissa,

I'm praying harder than last time for you to get better and for the doctors to be able to fix you and help you with your fight.

we all miss you here

love and big hugs

becks x x x

p.s. thanks em for all of the updates.

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oh melissa i am so sorry that things did not work out at U of M.. that really bites..

Just a though .. but have any of your old doc from Maryland been contacted? WHat about contacting John hoplins? I still say that MAYO .. somebody should be able to do something for you!!

You are in my thoughts and prayers thru out the day...

lots of hugs to you dear

em.. thanks you so much for all youve done .. your a blessing!

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Melissa,

We are continuing to pray for you. We miss you lots around here!

Lisa

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