Re: Home

[Guest guest]

,

I am so sorry that you had to go through all of that. Please rest, rest, rest. I am glad that they did admit you though to watch you and didn't send you home while you were that bad. I will be keeping you in my thoughts and prayers.

Smiles,

a

I'm home from Cleveland. Sorry this isn't a personal e/mail but I'm totally exhausted from last week. I'll try to give a summary of what happened as best I can.

We arrived Sun. and Mon. I had my EKG, Echo and pre-op appts with anesthesia, surgeon and mito doc. Tues. morning I had my broviac put in and my muscle biopsy done. My anesthesiologist was wonderful and came back multiple times after my surgeries to check on me. He was very aware about mito and all the risks involved. My surgeon was also very good and handsome too. I was in severe pain following the procedures and had to be admitted Tues night. It had to stay in the surgery ICU area until that evening waiting for a bed to become available on the floor. I began retaining fluids and was unable to completely empty my bladder but the surgery resident released me anyway on Wed. morning. The home health nurse came to Mc House to change my central line dressing and she was very concerned about me as well so she called Dr. Cohen(mito doc) He said to call him Fri. a.m. and if I wasn't doing any better he wanted to admit me back into the hospital. I was unable to sleep at all because of the discomfort. Fri morning we waited in the CCF lobby from 9-2:30 again waiting for a bed. I was put on alot of IV fluids and started back on the IV carnitor. I had a ton of docs come in and look at me and examine me. Dr. Cohen ordered alot of labs as well. I'm still waiting on those results. I was up all night Fri. due to the push of IV fluids. Sat. a.m. Dr. Cohen came in and said that he wanted me to stay another night as I wasn't feeling any better. He thinks that the urine retention is most likely from anesthesia and it could last a long time. I was so ready to come home that Sun a.m. we were packed and ready to go.

My biopsy showed that I have the fewest amount of mitochondria than anybody they have ever seen. On average a person has a ratio of about 6 mitochondria per cell and I have only 1.3. Dr. Cohen is going to have to be very cautious about what he tests for now because there are so few mitochondria to analyze. I know that some of the frozen mito are being sent to a Dr. Wong in Washington D.C. to do DNA replification testing. Dr. Cohen is having a conference call about me with 2 other docs tonight. He said I'm a very rare case and he doesn't have anyone else with my particular prob. He said there will be no answers for me found in a book. There is alot more investigating and testing to do. There hasn't been anything done except in test tubes on regenerating mitochondria. Dr. Cohen said anything will be experimental and risky but he doesn't even want to go there until he talks to some other docs and does more testing.

My mind is swimming with thoughts so if you have questions feel free to ask. I will do my best to write you back as soon as I can. I'm so sleep deprived and worn out right now.

Your prayers were much needed and very much felt. Thank you for being here for me and for your continued support in so many different ways.

Blessings,

[Guest guest]

Hi .

I know how difficult each trip is for you and it doesn't sound as if this one was any easier. Let's hope that the pending tests provide answers that will lead to an acceptable form of relief for you problems. I hate the testing as I'm sure you do also, and when they say that they'll probably find nothing, it's more than annoying to consider doing then anyway.

You need to get plenty of rest so your body can recouperate from the ordeal of travel. I'll be doing that this week to prepare myself for my trip to CC and then to the U of M which is next week.I don't travel well either so I expect this and try to rest before and know I'll have to rest after. I actually dread traveling these days and I expect that I could come home as you did..with no real answers to a lot of questions and a lot poorer but I also may come home looking at a surgery scheduled for a week later.

Welcome home...please find your most comfortable spot and enjoy it until you feel better.

Hugs!

Alice

[Guest guest]

Thank you Alice. I was telling my mom while we are at the RMH how nice it would have been to be able to meet you. I really hope that your trip goes well and that it isn't as hard on you as you are anticipating. You'll be in my thoughts and prayers.

[Guest guest]

Alison

I hope that your trip will result in more than feeling bad from your

traveling. It sounds as if they are trying to find the answers you need.

laurie

> From: LILQT4U1984@...

> Reply-To:

> Date: Sun, 22 Feb 2004 09:46:11 EST

> To: mito ,

> Subject: Home

>

> Hi,

> Thanks to everyone who was praying for me during my trip to CCF. I'm

> exhausted and it a much harder trip on me than ones in the past but I'm HOME

> now.

> Dr. Falk was great and had a sense of humor which helped. He said he

> suspects its just the mito affecting the smooth muscle in my colon and there

> isn't

> anything to do for that but treat symptomatically. He said since I haven't

> responded to that he could remove my colon and give me an ileostomy bag. Ugh.

> I

> don't think I'm ready for that. My motility is bad and makes me feel

> terrible, but I don't think I'm ready for something tha drastic. I have a lot

> of

> testing scheduled for April 1st and 2nd to rule out other causes although he

> doesn't expect to find anything. That will be anorectal manometry,

> defography,

> barrium enema and something else. I'm having a colonic transit test done

> locally.

> Dr. Cohen is still befuddled with me. He said I have raised alot of

> conversations. lol There is a new test for creatine deficiency and he said

> although

> it would be a long shot because it is extremely rare that my carnitine

> deficiency is extremely rare and I could have them both. He is also looking in

> to

> MNGIE. He said clinically I totally fit that. He ordered another sleep study.

> Ugh. I haven't decided where I want to that have that done yet. I can't have

> it

> locally, but I've heard of a mito sleep clinic place starting some place so

> I want to check into that. He also mentioned me going on TPN. I am having

> considerable muscle wasting as I have no more fat to loose. He said that could

> be contributing to my gut probs because I'm loosing muscle there as well. It

> will all depend on the test results and if I loose anymore weight.

> Dr. Deal was great. Very brilliant doc. He ordered many bone x-rays and

> labs. If my bones have sealed he is considering starting me on Forteo shots

> for

> my severe osteo. Downside is there no long term research to know the life

> long

> effects and the trials were halted due to it causing oteosarcoma in rats.

> The trip was really hard and painful, and ultimately there were no answers

> just alot more questions and testing but I feel good about how the appts

> went.

> I know I'm so blessed to have such caring and intelligent docs.

>

>

[Guest guest]

> Hi,

> Thanks to everyone who was praying for me during my trip to CCF. I'm

> exhausted and it a much harder trip on me than ones in the past but I'm

HOME now.

> Dr. Falk was great and had a sense of humor which helped. He said he

> suspects its just the mito affecting the smooth muscle in my colon and

there isn't

> anything to do for that but treat symptomatically. He said since I

haven't

> responded to that he could remove my colon and give me an ileostomy bag.

Ugh. I

> don't think I'm ready for that. My motility is bad and makes me feel

> terrible, but I don't think I'm ready for something tha drastic. I have a

lot of

> testing scheduled for April 1st and 2nd to rule out other causes although

he

> doesn't expect to find anything. That will be anorectal manometry,

defography,

> barrium enema and something else. I'm having a colonic transit test done

> locally.

> Dr. Cohen is still befuddled with me. He said I have raised alot of

> conversations. lol There is a new test for creatine deficiency and he said

although

> it would be a long shot because it is extremely rare that my carnitine

> deficiency is extremely rare and I could have them both. He is also

looking in to

> MNGIE. He said clinically I totally fit that. He ordered another sleep

study.

> Ugh. I haven't decided where I want to that have that done yet. I can't

have it

> locally, but I've heard of a mito sleep clinic place starting some place

so

> I want to check into that. He also mentioned me going on TPN. I am having

> considerable muscle wasting as I have no more fat to loose. He said that

could

> be contributing to my gut probs because I'm loosing muscle there as well.

It

> will all depend on the test results and if I loose anymore weight.

> Dr. Deal was great. Very brilliant doc. He ordered many bone x-rays and

> labs. If my bones have sealed he is considering starting me on Forteo

shots for

> my severe osteo. Downside is there no long term research to know the life

long

> effects and the trials were halted due to it causing oteosarcoma in rats.

> The trip was really hard and painful, and ultimately there were no

answers

> just alot more questions and testing but I feel good about how the appts

went.

> I know I'm so blessed to have such caring and intelligent docs.

>

,

I'm sure it's good to be back home! I'm happy to hear that you're being

seen and treated by some of the best and brightest. I hope they do find

some answers, or at least explanations, for you soon.

B

[Guest guest]

, Welcome back from CCF. I am sorry to hear that you are

having so many problems and are feeling poorly. I will pray that you

get some kind of relief and don't have a big crash from the trip. I

am glad you are blessed with a good team of Docters.Get lots of rest!

Sweet dreams,

Dawn

[Guest guest]

Thanks Celia. I couldn't tolerate the Zelnorm. My GI and PCP said they would never try me on it again after the reaction I had. I was thinking the same thing about the colon removal...it would just lead to further probs. with the remaining GI tract.

[Guest guest]

I have Mngie syndrome. I have to take Zelnorm. I took Lactulose for three years until it quit working. The zelnorm works wonderfully as long as I drink 2-3 bottles of water per day. I have now got this syndrome in my stomach and I have to take Reglan to process my food out of my staomach.

Betsy

Home

Hi,

Thanks to everyone who was praying for me during my trip to CCF. I'm exhausted and it a much harder trip on me than ones in the past but I'm HOME now.

Dr. Falk was great and had a sense of humor which helped. He said he suspects its just the mito affecting the smooth muscle in my colon and there isn't anything to do for that but treat symptomatically. He said since I haven't responded to that he could remove my colon and give me an ileostomy bag. Ugh. I don't think I'm ready for that. My motility is bad and makes me feel terrible, but I don't think I'm ready for something tha drastic. I have a lot of testing scheduled for April 1st and 2nd to rule out other causes although he doesn't expect to find anything. That will be anorectal manometry, defography, barrium enema and something else. I'm having a colonic transit test done locally.

Dr. Cohen is still befuddled with me. He said I have raised alot of conversations. lol There is a new test for creatine deficiency and he said although it would be a long shot because it is extremely rare that my carnitine deficiency is extremely rare and I could have them both. He is also looking in to MNGIE. He said clinically I totally fit that. He ordered another sleep study. Ugh. I haven't decided where I want to that have that done yet. I can't have it locally, but I've heard of a mito sleep clinic place starting some place so I want to check into that. He also mentioned me going on TPN. I am having considerable muscle wasting as I have no more fat to loose. He said that could be contributing to my gut probs because I'm loosing muscle there as well. It will all depend on the test results and if I loose anymore weight.

Dr. Deal was great. Very brilliant doc. He ordered many bone x-rays and labs. If my bones have sealed he is considering starting me on Forteo shots for my severe osteo. Downside is there no long term research to know the life long effects and the trials were halted due to it causing oteosarcoma in rats.

The trip was really hard and painful, and ultimately there were no answers just alot more questions and testing but I feel good about how the appts went. I know I'm so blessed to have such caring and intelligent docs.

Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack.

[Guest guest]

-Allsion, I take zelnorm also. It was given to me primarily to help my

gastroparesis but it has helped with the lower gut as well.My

stomach is the best it has been for years at present. I don't really think

removeal of the colon solves the problem in cases of motility,

becasue the motility problems are usually throughout the gut. Celia

-- In , " Betsy Stroup " <betsys690@k...> wrote:

>

> I have Mngie syndrome. I have to take Zelnorm. I took Lactulose for three

years until it quit working. The zelnorm works wonderfully

as long as I drink 2-3 bottles of water per day. I have now got this syndrome in

my stomach and I have to take Reglan to process my

food out of my staomach.

>

> Betsy

> Home

>

>

> Hi,

>

> Thanks to everyone who was praying for me during my trip to CCF. I'm

exhausted and it a much harder trip on me than ones in

the past but I'm HOME now.

> Dr. Falk was great and had a sense of humor which helped. He said he

suspects its just the mito affecting the smooth muscle

in my colon and there isn't anything to do for that but treat symptomatically.

He said since I haven't responded to that he could remove

my colon and give me an ileostomy bag. Ugh. I don't think I'm ready for that. My

motility is bad and makes me feel terrible, but I don't

think I'm ready for something tha drastic. I have a lot of testing scheduled for

April 1st and 2nd to rule out other causes although he

doesn't expect to find anything. That will be anorectal manometry, defography,

barrium enema and something else. I'm having a

colonic transit test done locally.

> Dr. Cohen is still befuddled with me. He said I have raised alot of

conversations. lol There is a new test for creatine deficiency and

he said although it would be a long shot because it is extremely rare that my

carnitine deficiency is extremely rare and I could have

them both. He is also looking in to MNGIE. He said clinically I totally fit

that. He ordered another sleep study. Ugh. I haven't decided

where I want to that have that done yet. I can't have it locally, but I've heard

of a mito sleep clinic place starting some place so I want

to check into that. He also mentioned me going on TPN. I am having considerable

muscle wasting as I have no more fat to loose. He

said that could be contributing to my gut probs because I'm loosing muscle there

as well. It will all depend on the test results and if I

loose anymore weight.

> Dr. Deal was great. Very brilliant doc. He ordered many bone x-rays and

labs. If my bones have sealed he is considering starting

me on Forteo shots for my severe osteo. Downside is there no long term research

to know the life long effects and the trials were

halted due to it causing oteosarcoma in rats.

> The trip was really hard and painful, and ultimately there were no answers

just alot more questions and testing but I feel good

about how the appts went. I know I'm so blessed to have such caring and

intelligent docs.

>

>

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The

author of this e mail is entirely responsible for its content. List members are

reminded of their responsibility to evaluate the content of

the postings and consult with their physicians regarding changes in their own

treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the

severity of the attack.

>

>

>

>