MARIA

[Guest guest]

In a message dated 3/14/01 2:12:26 PM Pacific Standard Time, brianpirtle@... writes:

hi my name is the one that has been talking about. I am going on a list at uci for a liver transplant i am in the process of going for an evaluation, to determine if i am physically and mentaly ready for the procedure. i have to admit that i am a little frightened. is there any one out there that has had the procedure that can share their experience with me.

I have no experience, but I wish you well.

Harper (AIH 5/00)

[Guest guest]

I also have no experience with transplants but I wish you the best. You will get lots of information on here from others. You are very lucky to have your friends looking after you. Hope you and your friends have a great rest of the week

Rosemary

[Guest guest]

,

I was fortunate to never have any bleeds, and I never took lactulose.

There are bunches of people in here who have and will be more than

willing to fill you in on their experience.

Take care,

--- Pirtle <brianpirtle@...> wrote:

> Hi this is again.

> First I want thank Harper for his wishing me well. Then I want to

> ask anyone out there if they are familiar with a procedure called a

> Esphogastro Duodenoscopy with banding of the varicies. This entails

> that a tube is inserted down my throat to stop the bleeding of the

> varicies which are the veins in the base of the throat. I was

> hospitalized for ten days, six of them spent at St.ph's Hospital

> and the remaining at University of California at Irvine. I am

> currently on the waiting list there for a transplant.I'm on a

> medication called Lactulose syrup, which removes the ammonia in my

> body which causes me to act in a confused state. I am asking for

> anyone out there who has had this procedure and has lived to tell

> about it. As I said in my earlier correspondence since I was in a

> coma and in intensive care at St. ph's and I have some fears

> about evolution which is scheduled at University of California.

>

> Thanks,

>

>

=====

Barbara Ann

AIH TX 12/94

BE AN ORGAN DONOR - OVER 75,000 NOW WAITING!

__________________________________________________

[Guest guest]

It sounds as if you're on the right track medically, . How fortunate you and your friends are to have each other. I didn't realize you were in California. I think several people in the group have gone through the procedures you describe and can give you information.

(Very small bit of trivia -- my husband designed a recent medical research building at U of California, Irvine.)

Harper (AIH 5/00)

[Guest guest]

,

What a pleasant suprise to see YOU post. Glad you are regaining strenght. I am new to this and cant provide much info, just some advise. READ every link that is sent that pertains to your situation, the links can be broken within a couple of days. READ everything you can, knowledge regarding your condition I believe can only help your mental ability to prepare for the transplant. Best of luck & welcome, we all care about you -- April

Mom of Elyse (15yrs old AIH 1/19/01)

[ ] maria

hi my name is the one that has been talking about. I am going on a list at uci for a liver transplant i am in the process of going for an evaluation, to determine if i am physically and mentaly ready for the procedure. i have to admit that i am a little frightened. is there any one out there that has had the procedure that can share their experience with me.

[Guest guest]

:-)

thank you !

f

-- Re: ( ) Re: From Fania - thank you to all of yoU!

Fania,

I'm speechless, that was beautiful.

[Guest guest]

Tree:That is so funny...I used to see Dr. Wheeler too and that is how I knew Ceil from before. Then when I was referred to Dr. Stern and she walks in...that was a wonderful surprise! She is such an asset to his practice. I told her that I knew you...we've talked about this before...I even talk to her about and she is always such a willing, listening ear. I would rather see her than Dr. Stern!

How have you been feeling these days??I am so looking forward to April 3!

On Sun, 25 Jan 2004 01:47:31 -0500 "Tree Sap" <treesap61@...> writes:

Hi , I was reading your post to patty and I saw your mention of the nurse practitioner and how you like her. I assume your talking about Ceil and I love her to death. She used to be the NP at my internist office and I almost fell over when she told me she had decided to leave his practice....then she told me where she was going (Dr. Stern) and I almost jumped into her arms LOL She also is an old family friend of one of my Aunts. You can talk to her about anything and she's just so compassionate and can put me to rest about the oddest of things ...don't know what I would do without her. Next time you go tell her you know me and that you are a part of FACES. Hugs to you all Tree:):)

Re: Patty::

Patty:I was officially diagnosed with RA January 2003, although I have hadfinger and wrist joint pain for probably 5 years or more. My symptomsworsened in October 2002 (Rob's symptoms came on March 2002), so I dowonder if the stress of Rob's illness had something to do with theworsening of my own RA. My mother was diagnosed with RA at about the sameage I am now. I remember she was on aspirin therapy and it seemed she wasalways getting joint injections. No, we don't see the same rheumy...Rob goes to a pediatricrheumatologist, I see an adult one. I like my rheumy ok, but I reallylike his nurse practicioner! We just click really well. They pretty muchlet me call the shots in my treatment.I began MTX April 2003 when I had a bout with eye inflammation. Theydidn't give me a choice on that one!Rob and I have different diseases. His is juvenile ankylosingspondylitis. It affects the joints and tendons. Notorious for affectingthe hips and spine. Rob presented with bilateral hip effusions. He islikely to have lifelong problems with the disease, and likely to need hipreplacements at an early age. You can control the disease with meds, butthere doesn't appear to be any 'growing out of it'. The good news is thatall the arthritis meds have calmed the inflammation in his lungs, and hisasthma is soooo much better!It sounds like Caitlin is making headway with the MTX, with the predtapering going on and the joints doing ok. How much MTX is she on? Theymay raise the MTX as the pred tapers to get her better control.We have similar problems with our endocrinologist. They are so rare, andso darned hard to get an appointment We were supposed to have a recheckin December, and I try to schedule appts so Rob doesn't have to miss somuch school. The last appt they take is 2 pm. And, they were closed theentire 2 week period he was off school for Christmas break. I have totake him out of school early on Tuesday to go for his recheck. What isirritating about that, the last time I took him out early, and we were inthe waiting room so long that by the time he got called back, he couldhave left school at the usual time and still made his appointment. Iasked them if I could call ahead and see how they were doing on timebefore I took him out of school, and they said they wouldn't do that. Notvery user friendly, to say the least. I told them if they were the onlydoctor Rob had to see, I wouldn't mind as much. But he sees nephrology,rheumy, eye doctor, orthodontist, allergist, pediatrician for 6 month ADDcheckups, and infectious disease doctors. He misses so much schoolbecause of all that! I feel sorry for the endocrinologist's patients whoare diabetic, because those kids have to be seen so much more often. Ithink it is shameful that they have such ridiculous office hours.Back off my soapbox. Hope Caitlin is doing well tonight and I'll lookforward to your post about on the HGH list! and Rob 14 Spondy>Sorry to hear you are having a flare yourself. I > knew your son had > JRA, but I wasn't aware you had RA. When did your RA show? Is it > the same > as Rob's? Do you both see the same rheumy?> > How long have you taken MTX? So far Caitlin hasn't had any nausea, > but she > really hasn't been on it that long. She just took her 3rd dose > yesterday. I > will keep the splitting in mind just in case. > Caitlin has been having great days - a huge relief I know you all > understand:) However, every night the spots are back on her hands. > Last night she had > the spots and a little bit of the rash on her one hand and the back > of one > thigh. Joints aren't swelling though and her pain is in one hand, a > couple of > oints and minimal. She kept saying her muscles hurt so I had to > explain the > difference between what's a muscle and a joint. Something most > children don't > have to be concerned with, but Caitlin now has to be aware of. She > frequently > has a slight fever in the early morning hours and then it's down by > late > morning. Go figure. She is nothing what she was at the very > beginning of this > illness thank God.> > goes Wednesday to her endo. We are expecting snow and the > last time > we had it they (whimps) canceled. I was so upset. She had waited 6 > months > to get that appointment and with the cancellation she had to wait 2 > more damn > months:( Hopefully, they don't cancel. I am just like you: I, > too, have > wanted to measure her so many times, but stopped myself (don't want > to disappoint > her if it's not a lot). So I havne't measured her a single time - > good mommy > LOL. I am anxious to see if and how much she has grown. There was > a two > week period that she stopped treatment because of the dingy's at the > insurance > company and pharmaceutical company couldn't get in agreeance, so > hopefully, that > won't affect her to much, we'll see. We still have years to grow:) > I am > just so thankful she was identified, approved and started treatment > and has not > had any side effects (the two big ones). I do know her feet have > grown and we > have to go today and get new shoes WHOHOOO:) Her muscle tone (she's > > hypotonic) has improved too. > > Have a good one.> > Take care.> Patty> > > >

[Guest guest]

---

Were you able to see the pictures in your email? Thanks for working

on it for me.

I don't know if my rheumy has email or not available to her

patients. I will have to check on that. It will be so much nicer

when we move to Arizona to find a rheumy that we can have better

access to. We live in a very rural midwestern area and I think that

only complicates matters further with trying to get Aundrea seen.

Thanks again for your help with the pictures.

sonia (drea 9 systemic)

In , H Schulz <snooksmama@j...> wrote:

> For some reason, is giving me problems uploading the photos.

I'll

> keep trying.

> and Rob 15 Spondy

>

>

[Guest guest]

I did. I saved them. But , I am such a computer dummy. I just got

this new computer, and of course, all the software is different. You sent

jpeg files, and for some reason, when it saves them to my computer, they

become bmp files. The jra list will only upload jpeg and gif. Odd thing

is, Alia sent me a picture, and I uploaded it just fine. So I don't know

what changed!

I'll keep trying. I even downloaded Adobe photoshop, as the one on my old

computer easily let me convert bmp to jpeg, etc, and what do you know,

the newest version of Adobe is not so simple to use. I feel really stupid

tonight.

Gotta go take Rob to his confirmation class. I'll try again later

tonight.

By the way, Aundrea is strikingly beautiful. I'd love to see a picture of

you, too!

My heart just broke for her when I saw the rash and blisters.

and Rob 15 Spondy

On Wed, 19 Jan 2005 22:43:16 -0000 " sonia1md " <sonia1md@...>

writes:

---

Were you able to see the pictures in your email? Thanks for working

on it for me.

I don't know if my rheumy has email or not available to her

patients. I will have to check on that. It will be so much nicer

when we move to Arizona to find a rheumy that we can have better

access to. We live in a very rural midwestern area and I think that

only complicates matters further with trying to get Aundrea seen.

Thanks again for your help with the pictures.

sonia (drea 9 systemic)

In , H Schulz <snooksmama@j...> wrote:

> For some reason, is giving me problems uploading the photos.

I'll

> keep trying.

> and Rob 15 Spondy

>

>

[Guest guest]

,I didn't mean to leave you hanging...between an infection, migraine and osteo acting up this week, I guess I finally crashed this weekend...you must be filled with nervous excitement about Rob heading off to college! How far away is his college? Will he be home on weekends? I I assume you got the dorm situation straightened out? I still am wondering, is that program he is in exclusive to his college? It sounds like something more colleges should incorporate! College and the dorm life are such memorable experiences. Please give Rob my best wishesnancy and amandasnooksmama@... wrote: I'm on pins and needles waiting to hear about the rheumy appt. Hope is feeling better. We're in the 1 week till college crunch!! and Rob 18 Spondy

Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when.

[Guest guest]

Hi ,

my name is Sue I also live in London......HELLO!

I would love to connect with you.

I have also had tests done through Myhill just for my Dr to totally ignore the findings, my Dr asked why I was wasting good money!!!!!

Myhill is very good,its just unfortunate that our Drs cannot or don't want to see the truth...very frustrating.

Have you had a removal yet? I had mine removed at the Blackheath hospital by a Dr Chapman, he removed the scar capsule (en bloc) and I had drains.

 

Would love to speak to you

 

Sue.

 

 

[Guest guest]

Hi Sue! I live in East London, i had my Implant out in march 2009 but the plastic surgeon left the capsule in, i still have a whole load of health problems, Hows your health? Be great to be in contact with someone who Knows what I'm talking about! RFrom: Sue Gibbens <suegibbens21@...>Subject: MARIA Date: Monday, 28 June, 2010, 15:44

Hi ,

my name is Sue I also live in London...... HELLO!

I would love to connect with you.

I have also had tests done through Myhill just for my Dr to totally ignore the findings, my Dr asked why I was wasting good money!!!!!

Myhill is very good,its just unfortunate that our Drs cannot or don't want to see the truth...very frustrating.

Have you had a removal yet? I had mine removed at the Blackheath hospital by a Dr Chapman, he removed the scar capsule (en bloc) and I had drains.

Would love to speak to you

Sue.

[Guest guest]

, I live in Kent but nearer to south London.Well to be honest my health is still not great, think some of my problems are menopause related which make them worse.

I had my implants in for a long time though 13yrs (silicone).

Where did you have your removal done ?

I wish I could have more tests done with Dr Myhill but its so expensive.

Have you thought about getting the capsule removed, I know its a hard decision to make ...another surgery ,but from what I have heard its pretty important to get rid of everything.

Sue

 

On Tue, Jun 29, 2010 at 1:28 PM, M RICHARDSON <richardson343@...> wrote:

 

Hi Sue!  I live in East London, i had my Implant out in march 2009 but the plastic surgeon left the capsule in, i still have a whole load of health problems, Hows your health?  Be great to be in contact with someone who Knows what I'm talking about!  

R

From: Sue Gibbens <suegibbens21@...>Subject: MARIA

Date: Monday, 28 June, 2010, 15:44

 

Hi ,

my name is Sue I also live in London...... HELLO!

I would love to connect with you.

I have also had tests done through Myhill just for my Dr to totally ignore the findings, my Dr asked why I was wasting good money!!!!!

Myhill is very good,its just unfortunate that our Drs cannot or don't want to see the truth...very frustrating.

Have you had a removal yet? I had mine removed at the Blackheath hospital by a Dr Chapman, he removed the scar capsule (en bloc) and I had drains.

 

Would love to speak to you

 

Sue.

 

 

[Guest guest]

Hi Sue,I had my saline implant in for nearly 11 years, i had it put in when i was 21 years old i really wished i never had it done! The NHS put my implant in and they removed it in march 2009. They dont believe the capsule is a problem so they wont remove it, im looking for a private PS now. What tests did you have done with Myhill? R

From: Sue Gibbens <suegibbens21@ sky.com>Subject: MARIA

Date: Monday, 28 June, 2010, 15:44

Hi ,

my name is Sue I also live in London...... HELLO!

I would love to connect with you.

I have also had tests done through Myhill just for my Dr to totally ignore the findings, my Dr asked why I was wasting good money!!!!!

Myhill is very good,its just unfortunate that our Drs cannot or don't want to see the truth...very frustrating.

Have you had a removal yet? I had mine removed at the Blackheath hospital by a Dr Chapman, he removed the scar capsule (en bloc) and I had drains.

Would love to speak to you

Sue.

[Guest guest]

I noticed that autoimmune disease worsens during pregnancy and when approaching menopause. This is why pregnant and menopausal women with implants have such severe symptoms. I had breast implant for 11 years and it didn’t affect me until I started approaching menopause last year. Then all hell broke los and I had all kinds of symptoms. I also noticed that for pregnant women the symptoms become severe too. I researched and may and I think it may be due to hormonal.

I was researching and found below written by Dr. Lee who specializes in female hormonal imbalance:

“The immune system is also affected by hormone status.†Dr. Lee

Dr. Lee states in a list of estrogen and progesterone effects that estrogen increases the risk of autoimmune disorders while progesterone functions as a precursor of corticosteroids. Why this is important is reflected in the following…

“Autoimmune disorders in general are thought to be triggered by transient viruses in susceptible people; the virus triggers antibodies against some protein component of the virus. By some probably minor fluke, the antibodies attack similar proteins in certain body tissues… Corticosteroids block this attack by one’s own antibodies.â€

“One can hypothesize that estrogen dominance may have had a hand in triggering the errant antibodies and thus correcting the estrogen dominance leads to gradual correction of the problem. Progesterone is also the main precursor of corticosteroids and in progesterone-deficient women, restoration of normal progesterone levels may enhance normal corticosteroid production, thus suppressing the autoimmune attack.â€

I think that for women with breast implant when they are pregnant, or approaching menopause, or have virus or parasites it will worsen the autoimmune disease. Pregnancy or menopause is time of estrogen dominance so our autoimmune disease is worsened during these periods. For people with virus and parasite it lowers the liver function causing estrogen dominance also.

The key may be restoring the progesterone level. Did anyone try this? Well, obviously pregnant women can’t do anything, but for menopausal women? Just removing implant will not alleviate the symtoms. You may want to check for your hormonal imbalance. Let me know if anyone agrees with this.

From: Sue Gibbens <suegibbens21@...> Sent: Tue, June 29, 2010 11:09:30 AMSubject: Re: MARIA

, I live in Kent but nearer to south London.Well to be honest my health is still not great, think some of my problems are menopause related which make them worse.

I had my implants in for a long time though 13yrs (silicone).

Where did you have your removal done ?

I wish I could have more tests done with Dr Myhill but its so expensive.

Have you thought about getting the capsule removed, I know its a hard decision to make ...another surgery ,but from what I have heard its pretty important to get rid of everything.

Sue

On Tue, Jun 29, 2010 at 1:28 PM, M RICHARDSON <richardson343@ btinternet. com> wrote:

Hi Sue! I live in East London, i had my Implant out in march 2009 but the plastic surgeon left the capsule in, i still have a whole load of health problems, Hows your health? Be great to be in contact with someone who Knows what I'm talking about!

R

From: Sue Gibbens <suegibbens21@ sky.com>Subject: MARIA Date: Monday, 28 June, 2010, 15:44

Hi ,

my name is Sue I also live in London...... HELLO!

I would love to connect with you.

I have also had tests done through Myhill just for my Dr to totally ignore the findings, my Dr asked why I was wasting good money!!!!!

Myhill is very good,its just unfortunate that our Drs cannot or don't want to see the truth...very frustrating.

Have you had a removal yet? I had mine removed at the Blackheath hospital by a Dr Chapman, he removed the scar capsule (en bloc) and I had drains.

Would love to speak to you

Sue.

[Guest guest]

Hi ,

I had numerous phone consults with her and she wrote to my Dr telling them I had chronic fatigue.....needless to say the Dr didn't believe it. I had a hair analysis done by Dr Kolb in America to be honest that didn't show up any problems, no platinum which was the main concern.

I cannot really afford the other tests, I would like to have my adrenals checked, I had them done privately by another firm who after told me the test was really aimed at men so another £70.00 wasted.

What tests have you had done?

I didnt bother to see if I was allergic to silicone as I am pretty sure that would be a positive so I couldnt see the point in wasting anymore money.

 

Sue

 

On Wed, Jun 30, 2010 at 10:00 AM, M RICHARDSON <richardson343@...> wrote:

 

Hi Sue, I had my saline implant in for nearly 11 years, i had it put in when i was 21 years old i really wished i never had it done! The NHS put my implant in and they removed it in march 2009. They dont believe the capsule is a problem so they wont remove it, im looking for a private PS now.   What tests did you have done with Myhill? 

R

From: Sue Gibbens <suegibbens21@ sky.com>Subject: MARIA

Date: Monday, 28 June, 2010, 15:44

 

Hi ,

my name is Sue I also live in London...... HELLO!

I would love to connect with you.

I have also had tests done through Myhill just for my Dr to totally ignore the findings, my Dr asked why I was wasting good money!!!!!

Myhill is very good,its just unfortunate that our Drs cannot or don't want to see the truth...very frustrating.

Have you had a removal yet? I had mine removed at the Blackheath hospital by a Dr Chapman, he removed the scar capsule (en bloc) and I had drains.

 

Would love to speak to you

 

Sue.

 

 

[Guest guest]

Sue,I had a silicone sensitivity test done recently and it can back with a definite poisoning of silicone ( i had a saline implant) . I'm waiting to speak to myhill next week i have to pay a fee of £70 for advice but its worth it as no one else will listens!! xx

From: Sue Gibbens <suegibbens21@ sky.com>Subject: MARIA

Date: Monday, 28 June, 2010, 15:44

Hi ,

my name is Sue I also live in London...... HELLO!

I would love to connect with you.

I have also had tests done through Myhill just for my Dr to totally ignore the findings, my Dr asked why I was wasting good money!!!!!

Myhill is very good,its just unfortunate that our Drs cannot or don't want to see the truth...very frustrating.

Have you had a removal yet? I had mine removed at the Blackheath hospital by a Dr Chapman, he removed the scar capsule (en bloc) and I had drains.

Would love to speak to you

Sue.

[Guest guest]

am wondering what this dr. does for treatment if your test came back as sensitive to silicone.

gg

From: richardson343@...Date: Thu, 1 Jul 2010 14:41:00 -0700Subject: Re: MARIA

Sue,I had a silicone sensitivity test done recently and it can back with a definite poisoning of silicone ( i had a saline implant) . I'm waiting to speak to myhill next week i have to pay a fee of £70 for advice but its worth it as no one else will listens!!

xx

From: Sue Gibbens <suegibbens21@ sky.com>Subject: MARIA Date: Monday, 28 June, 2010, 15:44

Hi ,

my name is Sue I also live in London...... HELLO!

I would love to connect with you.

I have also had tests done through Myhill just for my Dr to totally ignore the findings, my Dr asked why I was wasting good money!!!!!

Myhill is very good,its just unfortunate that our Drs cannot or don't want to see the truth...very frustrating.

Have you had a removal yet? I had mine removed at the Blackheath hospital by a Dr Chapman, he removed the scar capsule (en bloc) and I had drains.

Would love to speak to you

Sue.