[PostTxPBCers] Digest Number 2168

[Guest guest]

Here is my copy of one of the PBCers off shoot liver transplant digests.it

is a good group. As you see, everyone also just chats about life in general

if no one has any questions or problems... I suggest anyone who has had a

transplant or is going to have one join. (.or even a friend of anyone who

will have one ) Joanne

[PostTxPBCers] Digest Number 2168

> There are 7 messages in this issue.

>

> Topics in this digest:

>

> 1. Nov 29

> From: Sue Rosenfeld

>

> 2a. Re: Home again, briefly

> From: deejay

>

> 3.1. Wednesday

> From: lucy whitt

>

> 4.1. Thursday

> From: GRosen6190@...

> 4.2. Re: Thursday

> From: Mabented@...

> 4.3. Re: Thursday

> From: Mabented@...

>

> 5. (no subject)

> From: ElAlNe@...

>

>

> Messages

> ________________________________________________________________________

>

> 1. Nov 29

> Posted by: " Sue Rosenfeld " meredebebe@...

> Date: Thu Nov 29, 2007 11:23 am ((PST))

>

> I'm in Lome, Togo this week. Last evening attended the 45th

> anniversary of Peace Corps in Togo. It was very nice. Today

> took a PCV (Peace COrps volunteer), whose dad is a friend of

> mine, out to lunch.

>

> So I'm just blocks from the ocean. It's a treat to be able to

> see it everyday. I head back to Niger, via Burkina Faso, on

> Monday.

>

> Hope everyone is doing well.

>

> Sue(usually in Niger)

>

>

>

>

________________________________________________________________________________\

____

> Be a better sports nut! Let your teams follow you

> with Mobile. Try it now.

> http://mobile./sports;_ylt=At9_qDKvtAbMuh1G1SQtBI7ntAcJ

>

>

> Messages in this topic (1)

> ________________________________________________________________________

> ________________________________________________________________________

>

> 2a. Re: Home again, briefly

> Posted by: " deejay " deejay_199799@... deejay_199799

> Date: Thu Nov 29, 2007 1:07 pm ((PST))

>

> Kathy

> Though from a little different perspective, I

> understand where you are coming from with your

> parents. I am raising a grdaughter who has lived with

> me off and on her whole life. Her father incapable of

> being an emotioal supportive parent, a mother too busy

> pursuing other men to care about her

> daughter most of her daughters life. Until she found

> out with the death of her father, there would be a soc

> sec check to get. It is so tough on kids to be raised

> that way. And yet, they are still your parent, good,

> bad or indifferent. And that inner child says you

> need to help them. I feel for you.

> You are often in my thoughts.

> Debbie

> --- Kathy Dillon <persimmontree1@...> wrote:

>

>> Dearest Elaine, and for all who have sent prayers

>> and hopes. Thanks

>> you for your kinds words, thoughts and calls. Three

>> days of 50 mg of

>> Solumedrol that helped some, but for the first time

>> I have some

>> spasticity in my foot that hasn't been helped, so we

>> will maybe try

>> some new drugs. Either a Chemo in pill form or small

>> dosage

>> Baclofin. Goods news is after feeling quite ill the

>> last weeks with

>> the post-op relapse, the brain/spine MRI showed no

>> new lesions or

>> inflammation! Thank goodness. After being in the

>> ER from 10PM until

>> 5AM Friday night, then being up again all night

>> Saturday night with

>> my MRI from 2AM until 4AM, and starting the IV

>> steroid infusion from

>> 5:30 am until 7:30, I told them I thought patients

>> should get

>> overtime for working night shift at hospital. Friday

>> night they

>> accessed my port incorrectly twice, broke the IV

>> line after the blood

>> had backed up 3 feet in it, and I was in a fountain

>> of blood. The

>> nurse didn't have gloves on, so they wanted to test

>> me for HIV and

>> HEP since she was exposed. She had cuts on her

>> hands so she has to

>> be tested. I said go for me ahead but after

>> participating in a liver

>> study at NIH where it is protocol to be tested for

>> every known

>> variant of HIV even though you have no risk, and

>> after being dx with

>> PBC/AIH and being tested for the Alphabet

>> Hepatitises, vaccinated,

>> and routinely tested for antibodies to be sure I

>> don't need new

>> vaccinations, and I think you're safe on this one.

>> But I wasn't about

>> to put to put this nurse through the agony of

>> wondering since she

>> doesn't me from the man in the moon. So Friday night

>> didn't turn out

>> quite like I expected, but the MRI report was good.

>>

>> Unexpected great news, my neuro said he thinks I

>> should start driving

>> as soon as I am cleared by state evaluation rehab,

>> and what kind of

>> clearance--regular car, hand controls, etc. After

>> two years driving

>> again! I don't believe it! What I will be driving

>> is another

>> question. I will write to every major car company,

>> Oprah, anybody I

>> can think of, and ask for a charitable donation of a

>> used, but safe

>> car since I can't even afford health insurance and

>> rent now. The Lord

>> giveth and the......after that great news, I was

>> then informed that I

>> had been classified as " Secondary Progressive MS " ,

>> the next stage.

>> Not the best news, but we all move on, like with

>> PBC, so I am upstaged.

>>

>> Also, my (biological) mother is on a rare visit.

>> She is 85 now, and

>> she and my " father " were divorced when I was a baby

>> and I have no

>> conscious recollection of my " father " , although I

>> remember shaking

>> his hand years later. My " father " fought in WWII,

>> the Allied Invasion

>> of Italy, first, Salerno, then, San Pietro, then

>> Monte Cassino, two

>> of the worst battles of the war. Houston made

>> a famous

>> documentary about San Pietro and my 'father " was

>> never the same

>> afterwards that battle and the Rondo River. He was

>> one of 26

>> unwounded men who walked away alive in his battalion

>> from San Pietro.

>> And that was just the beginning: he then went on to

>> free up Anzio

>> beach head, then back into Rome, then got on boats

>> with the others

>> for two days, landed in France, and fought his way

>> through France

>> into Germany. He relives the war everyday and never

>> recovered from

>> the trauma as millions didn't. My grandma and

>> grandpa raised me until

>> I was 10, Grandma was everything to me, and then my

>> mother took me on

>> her career posts around the world until I was 18,

>> then left again. I

>> was totally estranged from my mother for several

>> years recently on

>> advice of my psychologist and myself. She wasn't

>> even aware of my

>> liver dx, nor my MS dx, until some doctor gave out

>> info he shouldn't

>> have, and she found me paralyzed with shaved head at

>> the Nat Rehab

>> Hosp. She couldn't come for the liver resection, she

>> has panic

>> attacks about medical issues, but now she has

>> blocked carotid

>> arteries at 80%. So after being released this

>> afternoon, I go

>> tomorrow morning with her to pre-op testing in

>> Virginia, and then day

>> after tomorrow she has a carotid endarterectomy on

>> the right side at

>> 5:30 am, and then a week later on the left side at

>> the Virginia

>> Hospital Center. I will stay with her from surgery

>> until we leave;

>> she is too scared and hasn't been through what I

>> have been through. I

>> am her only child and only living relative. I asked

>> myself what

>> grandma would do, and she would stay with friend or

>> stranger, it was

>> her way. Sometimes parents can't be parents for

>> their children, the

>> world doesn't let them; the war takes them, or

>> careers take them. So

>> maybe I can be the parent for a little while but I

>> hope my MS lasts.

>> There wasn't enough time, and no PT, and not enough

>> medicine, so I

>> hope between the liver resection and the MS I can

>> make this one. My

>> neuro met my mother in the hosp, was quite

>> surprised, but I told him

>> about the surgery, and exchanged interesting info

>> about liver

>> disease, MS, and carotid arteries.

>>

>> I am exhausted. Maybe these are just blessings in

>> disguise. I

>> remember that my 'father " was wounded but refused

>> the medals his

>> commanders offered him and refused VA pay; he said

>> he could accept

>> nothing after the atrocities he witnessed. When I

>> first moved back

>> to the US from France I lived with man who was

>> deported to Auschwitz

>> at the age of 13. Every year at Channukah he

>> brought me latkes and

>> fried apples, I made him roasted meats in the

>> European style, and he

>> danced Roumanian dances until early morning. You

>> know what he said?

>> " This hasn't been a bad life after all. "

>>

>> This is the easy part. All prayers for my mother

>> will be gratefully

>> appreciated. She hasn't been through what all you

>> have, she is so

>> scared. We are trying to be comforting, do nice

>> things, talk about

>> the fun things after surgery. She has this habit of

>> trying to think

>> about the surgery; I told her, let the surgeons do

>> that, you will be

>> dreaming peacefully. Think about the wonderful time

>> when you wake up

>> and feel so much better. Blessings to all.

>>

>> Kathy in DC, with the beloved waiting for her

>> walk.

>> (Thank you )

>>

>

>

>

>

>

________________________________________________________________________________\

____

> Be a better sports nut! Let your teams follow you

> with Mobile. Try it now.

> http://mobile./sports;_ylt=At9_qDKvtAbMuh1G1SQtBI7ntAcJ

>

>

> Messages in this topic (3)

> ________________________________________________________________________

> ________________________________________________________________________

>

> 3.1. Wednesday

> Posted by: " lucy whitt " lucyw1212@... lucyw1212

> Date: Thu Nov 29, 2007 3:27 pm ((PST))

>

> Glenda, so happy that your liver is happy!! and you are at half way

> point -----

>

> Lucy

>

>

> ---------------------------------

> Get easy, one-click access to your favorites. Make your homepage.

> Messages in this topic (589)

> ________________________________________________________________________

> ________________________________________________________________________

>

> 4.1. Thursday

> Posted by: " GRosen6190@... " GRosen6190@...

> Date: Thu Nov 29, 2007 4:29 pm ((PST))

>

> Dry, dry today but not as windy. Took Alan to doctor today but all is

> well.

> We even figured out how to get his new walker in the car.

>

> Lucy--Hope all is well and dry with you.

>

> Debbie/Ind--I feel for your grandaughter but she is very lucky to have

> you.

>

> Sue--Togo is where? For us geographically challenged folks? Ocean sounds

> good. Nice breezes?

>

> Marilyn--We're to have a chance at rain tomorrow. Even a small amount

> would

> be welcome.

>

> Hope all is well. Hugs, Glenda

>

>

>

>

>

>

> **************************************Check out AOL's list of 2007's

> hottest

> products.

> (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

>

> Messages in this topic (671)

> ________________________________________________________________________

>

> 4.2. Re: Thursday

> Posted by: " Mabented@... " Mabented@... mabelfisher

> Date: Thu Nov 29, 2007 7:02 pm ((PST))

>

> I agree with you, Glenda, that Debbie's granddaughter is very blessed to

> have Debbie in her life. When she is my age she will tell everyone that

> her

> Grandmother made the difference in her life!!! I admire you, Debbie.

>

> I don't remember if I mentioned that at my November 17th Hep appointment

> my

> Creatnine was 1.4 which was a steady climb from 1.0 in July. I had my

> follow

> up Creatnine labs today and it was down to 1.1. I told the lab tech that

> called " Thank You for my first Christmas present. " I am relieved. He

> took me

> off Lasix but I think the culprit was a contrast dye they used for the

> Lung

> Sprial CT Scan during the month previous to my labs. But I am most

> grateful

> as you can guess. I am happy for all the other normal labs we hear about

> in

> our group.

>

> Speaking of precipitation ... we are to get what the weatherman called

> " every form of precipitation Saturday through Sunday. Rain, Freezing

> Rain, Snow

> and something he called " Grebbles " or something like that. He meant

> that

> little pebbly stuff that falls sometimes like snowy hail. Anyway, that

> sounds

> lovely especially since we are to drive 3 hours with the car full of 3

> grandkids and their parents to a wedding reception for the #1 daughter!!

> Life in

> the Midwest!!! I wish I could turn it all into gentle rain and send it

> to

> those of you who need it. I don't need this :-)

>

> Decorating is in full swing here in my little cottage and I am trying NOT

> to

> think about how fast I'm going to have to move to get it all down in time

> to

> head to California!! Just enjoy the NOW I keep telling myself. But I

> did

> more than I said I was going to do and the house is VERRY MERRY but I am

> going to pay a price starting midnight 12/25 when Christmas is officially

> over.

>

> Interesting story, Kathy, about your Father and your Mother's need for

> your

> care and how willing you are to step up to the plate. You are in the

> category of people I admire who sacrificially care for others. I have had

> stress

> over my Father and his situation here and he isn't my hero right this

> moment,

> but I continue to try to be the " Good Daughter. " He got upset about

> something

> and " lost his mind " and now he has decided he doesn't want to live so he

> wants no further curative measures and they have put him on Hospice. And

> he

> says he's thrilled with all the pampering he is getting from them. I

> have

> checked my birth certificate and he IS my father even though I cannot

> relate to

> him at all. But that doesn't keep me from being whatever kind of support

> I can

> be without actually encouraging this type of thinking. And I just pray

> God

> not let the stress which I can't seem to escape affect my health.

>

> Well I should go back and delete that paragraph but I think I'll hit

> " send "

> anyway!! Thanks for listening!!

>

> Hugs,

>

> Mabel

>

>

>

> **************************************Check out AOL's list of 2007's

> hottest

> products.

> (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

>

> Messages in this topic (671)

> ________________________________________________________________________

>

> 4.3. Re: Thursday

> Posted by: " Mabented@... " Mabented@... mabelfisher

> Date: Thu Nov 29, 2007 7:07 pm ((PST))

>

> All that I said and I didn't say what I hit " reply " to mention .. that I

> am

> happy Alan's doctor's report was good and that you are more comfortable

> with

> the walker.

>

> And that you're making such good progress with radiation. AND that your

> labs are good. You two deserve all the good reports you can get!!!

>

> Constantly sending good thoughts and prayers your way

>

> Hugs,

>

> Mabel

>

>

>

> **************************************Check out AOL's list of 2007's

> hottest

> products.

> (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

>

> Messages in this topic (671)

> ________________________________________________________________________

> ________________________________________________________________________

>

> 5. (no subject)

> Posted by: " ElAlNe@... " ElAlNe@...

> Date: Fri Nov 30, 2007 3:12 am ((PST))

>

> jUST A QUICK NOTE TO SAY HELLO AND HOPE EVERYTHING IS OKAY WITH ALL OF

> YOU.

>

> BERNIE IS IN THE HOSPITAL AND THEY THINK IT IS PNEUMONIA.....WHICH SO

> MANY HAVE RIGHT NOW....THERE IS NEVER A DULL MOMENT WITH ANY OF US IS

> THERE.....BUT WE ARE STRONG AND CAN HANDLE IT......SO LATER ON WHEN I

> COME BACK FROM THE HOSPITAL I WILL LET YOU ALL KNOW WHAT IS GOING ON.

>

> I AM OKAY.....TALK TO YOU LATER.

>

> LOVE ELAINE

>

> Be positive, keep smiling, and take one day at a time.

>

>

>

>

> Messages in this topic (1)

> ________________________________________________________________________

> ________________________________________________________________________

>

>

>

> ------------------------------------------------------------------------

>