Jacquelyn

[Guest guest]

Jacquelyn

Your spirit, endurance and FAITH is an inspiration to us all.

My prayers are with you and your family.

Michele

[Guest guest]

Roy,

The vena gram is a test where they go in from the groin area into a vein or

artery similar to an ERCP. The last time they did this they found a blocked

artery that goes from her liver to her legs. This is what is causing her legs

to be blue and swollen and painful. I talked with her on Friday and she has

contacted an attorney and suddenly Baylor has swung around and seems very

concerned about treating her. As you probably remember they did her transplant

in record time and also released her sooner than usual. She has been through

the mill and hopefully they are on the right track now. She goes in tomorrow

for the test. She also seems to have adhesions from her numerous surgeries that

are strangling her bowel so she has constant diahreha.

Please! Everyone keep her in your prayers.

Peg

Roy Toutant wrote:

> Jacquelyn,

>

> Hope they find out what's going on. I don't know what a vena gram is, but

> had a lot of ultrasounds before and after the transplant, and I think

> they can visualize blood flow using ultrasound. Maybe the vena gram shows

> more?

>

> Anyway, please let us know what you find out.

>

> Best wishes,

>

> Roy T.

>

> Re: Hello it's Jacquelyn

>

> > Dear precious group,

> > I pray that each of you are doing very very well!! I'm so sorry I

> haven't

> > been a faithful writer, but my prayers have been with you all even when I

> > can't get online.

> > Just a little update...first of all..the liver is doing perfectly!!

> > Secondly if you will please be in prayer...I am going into the hospital

> again

> > on 12/14 for a second vena gram (the artery (sp?)) behind the liver.

> They

> > are just going to be looking..no touching it!!haha! If you will please

> pray

> > that they can tie all of my problems to this one thing and that it can be

> > fixed quickly and easily. I know that God's timing is perfect and that he

> is

> > in control and that I must " rejoice through my trials " ...I have to say

> these

> > verses to myself millions of times a day lately!!haha!

> > Please take care and please don't worry, everything will be fine. Roy

> is

> > right....with 99% of the patients I've talked to 6 mo. post tx is smooth

> > sailing. My body is just a little more stubborn!!

> > I love you all so much!

> > Love,

> > Jacquelyn

> >

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[Guest guest]

Peg,

Thank you for updating everyone and asking for prayers. I'm sure you've

read my earlier post about the possible carcinoma tumor.....

" And we know that all things work for good to those who love God and to those

who are called according to His purpose " ...Romans 8:28 is what I keep

repeating over and over again!!

Love you,

JQ

[Guest guest]

Peg,

Please let 's family know that lots of candles will be burning for

her on Thursday here in New Hampshire. That's along with lots of prayers

being said for her.

Phil & Peggy Alfeld wrote:

> Jacquelyn has been admitted to the Baylor hospital. She has 2 collapsed

> arteries her superior and inferior - behind her liver. They will be

> doing surgery on Thursday morning to try to make artificial arteries.

> This is a far more serious surgery than the tx. The tx doctor that will

> be doing it is one of very few doctors that can do it and he's only done

> 3. They also suspect and are testing for carcinoid syndrom (a floatng

> maglignoid tumor).

>

> She broke down when she asked me to pray for her children since she

> won't be able to be home for Christmas.

>

> She also asked for special prayer that she won't need a respirator or

> the tube that goes down her throat. I have her number at the hospital

> and her home address. But most of all she needs your prayers and please

> pray for Luke and the kids.

>

> I'll keep you all posted as to what is happening because I'll be calling

> her periodically.

> Peg

>

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[Guest guest]

Dear Peg,

Thank you for your letter. It always makes Luke feels good when someone

asks about him b/c noone ever does...so he'll be really happy that you were

checking on him!!

Love ya,

jq

[Guest guest]

Dear Mom, Peg,

I'm one step ahead of you!!! I was soooo upset after that last appt with

Dr.H. that I walked in the door and called Dr. in OKC and made and

appt for Jan 25th. If he can't figure it out then I will see if he can

recommend someone at Mayo. I'm serious about this now...this is for the

birds...all of these " I don't knows " .

Love ya,

JQ

[Guest guest]

Good for you!!!!!!! :~) That makes me soooooo happy. Those guys at Baylor can

go fly a kite. You don't deserve their mistreatment (and I mean that physically

and mentally). Keep up the good work. I'll try to call you tomorrow from

work. We are leaving for Vegas Saturday and coming back on Tuesday night. So

I'll be off line. Gee someone else will get a chance to talk.

We are taking Spunky in for declawing and spaying while we are gone. Hope

she'll still love us when we get back.

Tell Luke he didn't need to be so generous with his flu. Hope you guys don't

get it too bad. Get some help to take care of y'all.

Love,

Peg

JQS2@... wrote:

> Dear Mom, Peg,

> I'm one step ahead of you!!! I was soooo upset after that last appt with

> Dr.H. that I walked in the door and called Dr. in OKC and made and

> appt for Jan 25th. If he can't figure it out then I will see if he can

> recommend someone at Mayo. I'm serious about this now...this is for the

> birds...all of these " I don't knows " .

> Love ya,

> JQ

>

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[Guest guest]

I've thought of that too, . Let's all pray hard!!!

Jodi

From: WYBEAR21@...

Reply-To: egroups

To: egroups

Subject: Jacquelyn

Date: Tue, 18 Jan 2000 12:37:56 EST

Has anyone heard how Jacquelyn's Dr.'s appt. went yesterday? She promised

to

email me when she got home, and I know that she was going to call Peg. I

haven't gotten an email from her, and I'm extremely worried. I'm hoping

this

just means she's resting with her feet up like she's supposed to.

Love,

______________________________________________________

[Guest guest]

,

I was able to open the letter from Jacquelyn. I will try to talk with her soon,

now that we are back. I talked with her Saturday before we left for Las Vegas.

I

think she needs to get the other opinion in Ok and she has decided to do that.

The best thing we can do is pray that she gets over this flu without it causing

serious complications to her condition and then is able to stick to her desire

to

get help from her old doctor and we need to pray that he and his tx center can

help Jacquelyn.

I think the doctors at Baylor are grabbing at straws and the sad thing is that

they won't admit their limitations in treating this and send her to someone that

can really help her. The donor's mother is totally behind her doing anything

she

can to get well. She has indicated that her church friends are helping. It's

so

frustrating but the best that we can do is pray for her and keep sending her our

love.

thanks for passing this on it's almost 11:00 p.m. and I just plowed

through the 113 messages I returned to.

Peg

WYBEAR21@... wrote:

> Hi everyone, this is the email that Jacquelyn sent me. Any advice would be

> greatly appreciated!

> Love,

>

>

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>

> Subject: Re: disregard last letter

> Date: Wed, 19 Jan 2000 00:21:35 EST

> From: JQS2@...

> To: WYBEAR21@...

>

> Dear ,

> i can just write for a sec b/c I took some meds that make me really

> sleepy so I won't make any sense and if you would please relay the msg to

> everyone what the latest is on the medical stuff I would greatly appreciate

> it.

> The bottom line of the medical stuff is that retransplanting is not a

> good option at this time...praise the Lord...the only problem that the only

> good option is a stent and if I were to get one of those then I could never

> be retx again. Right now the doctors want to try to treat me with the really

> tight pressure hose and elevation and pain meds prn. That's not my favorite

> options, but I guess it'll work for now. I told him that we were getting a

> second opinion and I got all of my medical records today. We will be getting

> that opinion on Jan 25th hopefully!! I think that the flu bug has FINALLY

> reallly hit me, so I'm going to bed now.

> The reason I asked you to forward my info is b/c I couldn't really

> understand quite how to reply on that egroup thing, but I'm sure I will if I

> try at a decent hour!!! Please tell everyone how much I love them and are

> praying for them.

> OH, the doc also wants me to see an endocrinologst b/c he said that

> sometimes when the vena cava is collappsed as mine is that blood will back up

> into the kidneys therefore causing my blood pressure to be so high??!! You

> may want to mention that to one of the docs and see if that sounds familiar!!!

> I guess I'd better go to bed while I can...C and C will be up with the

> sun!!!!

> I love you so much!!

> Jacquelyn

[Guest guest]

Dear Jacquelyn,

I haven't done much posting in quite awhile, but I do read practically all of the

posts from the group. My heart goes out to you and all of the pain and suffering

you have been through. I know from your posts that you must feel at times that

you have hit a deadend with the doctors that you are seeing and I just wish

that someone could offer you some wisdom as to where to find the help that

you need. I was wondering if you had talked personally with your doctor in

OKC on the phone and explained to him how you feel and perhaps he could

find a doctor for you who might be familiar with your type of problem. My

prayers are with you and your family each and every day.

Carol

[Guest guest]

Aubrey,

They went in and opening Jacquelyn up again to try to expand the vena cava

and put a patch that can be expanded. While she was open things didn't look

as bad as they expected and she recovered remarkably from the serious

operation. Trouble is when she was put back together the the vena cava

didn't have anymore blood flow (gosh, I can't think of any of the technical

words) space than before they opened her up.

As far as the lasix, when she started the UC meds she got better but when

she started the lasix she went into the horrendous diarreha and cramping

attacks. They did a colonoscopy a few months ago and said her UC was almost

non existant - that's why she stopped the meds not realizing that you have

to stay on them to keep it from starting up again.

I don't know why she's having to get her info from us instead of the

doctors. But that was during the time they were refusing to treat her

because they no longer took Secure Horizons. After she mentioned that see

was seeking legal advice they started seeing her again and then did the

second surgery. They are saying that the liver is either too large and/or

misaligned - they did her transplant in a record 2 1/2 hours and sent her

home before a week. Is something wrong with this picture?

My question was does the liver hold water is that why, since they suspect it

is too large, they put her on the lasix. She doesn't appear to be getting

very good instructions when she goes on the meds cause she thought she

should stop drinking fluids and almost dehydrated until Phil told her she

had to keep drinking water.

Peg

Aubrey Goldstein wrote:

> I'm a firm believer in wearing a Medic Alert bracelet. I wore one before

> my tx and continue to wear one now. As a former ER physician I know how

> valuable they can be when the patient can't tell us anything and there

> are no relatives or other friends around. It's really very important if

> you have a chronic condition or any allergy.

> Raloxifene will not cause uterine cancer according the the studies done

> to allow it to be marketted. However, you should report any unusual

> uterine bleeding to your doctors.

> I'm glad to hear that is back on her UC meds. And on lasix to

> remove some of the fluid she's retaining. It may be that she has a

> situation where there is a kink or twist in her vena cava reducing

> return flow from her lower body causing fluid to build up there. That is

> a terrible situation which I hope they can solve soon.

> Colonoscopies are far better ways to assess UC or other bowel diseases

> than barium enemas. I'm so sorry to hear about people losing part of

> their colons due to this situation. I have scopes yearly but I know that

> eventually I'll be needing a colectomy for UC. My sister has had this

> procedure and then a reanastamosis 4 months later. I'm hoping they can

> do the whole thing in one stroke when it's my turn.

>

> Aubrey

>

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