April

[Guest guest]

Hi April: My name is Genny and my 27 year old daughter, Jodi has AIH and my

65 year old mother, Vivian has ITP. Jodi was diagnosed a year ago and her

platelets have not been over 50,000 this whole time. She had her blood work

up today and they were 32,000. My mother was diagnosed in June, her platelet

count was 18,000. She has been up and down with Prednisone and so has her

platelets. She was seen at Moffitt Cancer Center Wed. for second opinions

since the only thing her Oncologist wanted to do was take out her spleen

(Moffitt treats more than just cancer). Jodi and I go to University of Miami

for I am being tested to be a living donor. Anyway Jodi was examined by the

transplant hepatologist in Dec. and put on the transplant list. I asked him

about my mother and taking out the spleen and he said don't let them do it.

He also said that they had several people referred to them after the spleen

was removed and they didn't live. So what I am saying is some people with

AIH have platelet problems and have to be very careful about bleeding. They

would not do a biopsy on Jodi for this very reason and the hep. said he

didn't need it to tell Jodi has cirrhosis. My mother saw an internal

medicine Dr. when she was at Moffitt and next will be a hematologist. I sure

hope we get some answers because I think they know little or nothing about

ITP. I hope things get better and maybe this is of some help to you. Take

care and God bless, Genny/Jodi's Mom

[Guest guest]

Cheryl,

You get so much more than you deserve. Life needs to treat you better. I

know what you mean about trying to fix everybody else. I'm that way too. My

illness just makes me mad at myself... and depressed that I used to be able

to do so much more. Don't worry about losing your temper. It happens to all

of us. I've been guilty of blowing up over something simple many a time.

Debbie (Tommy's Mom)

> [Original Message]

> From: Cheryl <lrb@...>

> Liver Support Group < >

> Date: 3/5/01 1:06:36 AM

> Subject: [ ] April

>

> April,

> I know how you feel. I think it is ironic that I have a liver

> disease when I have never been a drinker. In fact, I live a pretty

> darn

> clean life: no drinking, no smoking, no caffeine, no carbonated

> drinks--though I did use a caffeine drinks a lot this fall--I was so

> tired I couldn't function. I had quit using them for a while though

> before that. I've never done the others. So I sometimes wish that

> certain people would reap the consequences of their profligate

> lifestyles right now. I don't spend time wondering why me. I guess I

> think more about why not me. And because I'm co-dependent, I try to

> fix

> everyone else's life. If you want to know how pathetic at times my

> life

> has been, this disease has been an escape from the problems of my

> personal life. I'd much rather deal with this than that. But, I'm

> doing

> OK. I did blow up at some of my family members today. I'll blame it

> on

> fatigue and pred. We all know I would never do that normally. I do

> worry

> about where this is going--the problems with my granddaughter. Life

> is

> sure difficult sometimes. How are you doing? Hope things are going

> well.

> I did get some grading done last night and today, so even insomnia

> has

> its perks. LOL Cheryl ID

>

>

>

[Guest guest]

Thanks April,

Good luck to you too...This job wont be so new, its another bartending

job. My sister works there and they needed help. Ive been bartending

for 10+ yrs. So its a piece of cake for me. My sister and I are so

much alike that we clash lolol so this should be interesting.

They gave me the best shifts and the $$ is good. Im not interested

in parting no more, just getting out of dept.

I always say that in my next life, Im not going to marry for love,

Im going to marry for money...forget love lololol..Im just kidding.

....Take care

Kay

[Guest guest]

Hi April, Well Hunt has dropped his biology course so he won't be doing the paper. This disease and meds are really affecting his ability to focus and the bio was just too much for him along with all his other courses. This is what his advisor recommended for him so I guess it was the right thing. Everytime Hunt starts back to school, his has a flare-up, which is probably contributed to stress so anything we can do to reduce the stress is good. He will probably be 30 before he finishes college but that is fine as long as he is well. Hunt is like Eylse but worse. He does take his meds but he sure is not watching his diet at all. It is fast food basically everyday and night for him. It just seems that these guys that live in the apt just think they can't cook and don't want to learn. Hunt also does not read up on AIH at all. All his info comes from me and he is not too interested in that. He does want to know that worse though and always wants to know the results of his labs. I send mail to his girlfriend of 2+ years so at least she will watch out for him. Unfortunately she is not in the same town so can;t help him with his diet. I think down the road our kids will want to know more but right now, they are in no pain and feel OK so I guess they are not real concerned, so much more to think about at that age you know.

Well i hope Eylse has a good week and she does not have go worry much,, You either

Rosemary

[Guest guest]

Hi April: Where in Florida are you headed? I am in Central Fl about 40

minutes from Disney World. Genny/Jodi's Mom

[Guest guest]

Hi Rosemary,

Curious when Hunt was diagnosed. How old is he now? Also, doe he go away to college? Just wonder how to deal with that one, Elyse wants to be a Dr. not sure this is possible now due to Pred & 6mp, had candystriped at the hospital & Dr made her quit, desperately misses it & will ask the Dr if she can when we go to her Mon. appt. I just wonder about how to let go when they are far.....

Elyse woke up in the middle of the night with an ear infection two days ago, I slept in her bed with her thinking "What if , What if" she is taking amoxicillion only for 5 days, she is feeling better already but she never really had ear infections or illnesses ---must have been that overactive immune system all along.

Re: [ ] April

Hi April, Well Hunt has dropped his biology course so he won't be doing the paper. This disease and meds are really affecting his ability to focus and the bio was just too much for him along with all his other courses. This is what his advisor recommended for him so I guess it was the right thing. Everytime Hunt starts back to school, his has a flare-up, which is probably contributed to stress so anything we can do to reduce the stress is good. He will probably be 30 before he finishes college but that is fine as long as he is well. Hunt is like Eylse but worse. He does take his meds but he sure is not watching his diet at all. It is fast food basically everyday and night for him. It just seems that these guys that live in the apt just think they can't cook and don't want to learn. Hunt also does not read up on AIH at all. All his info comes from me and he is not too interested in that. He does want to know that worse though and always wants to know the results of his labs. I send mail to his girlfriend of 2+ years so at least she will watch out for him. Unfortunately she is not in the same town so can;t help him with his diet. I think down the road our kids will want to know more but right now, they are in no pain and feel OK so I guess they are not real concerned, so much more to think about at that age you know. Well i hope Eylse has a good week and she does not have go worry much,, You either Rosemary

[Guest guest]

Hi Genny

We are flying into Tampa on 4/3 leaving the 11th. My dad just got remarried

3/10 and bought a house with his new wife in New Port Richie. (We lost my

mom to cancer in 97). My dad & Cammie are moving 3/23 into their home, I

hope closing goes ok & stuff so we dont end up in a hotel!

Re: [ ] April

> Hi April: Where in Florida are you headed? I am in Central Fl about 40

> minutes from Disney World. Genny/Jodi's Mom

>

>

>

[Guest guest]

April, I am almost positive that the white blood cell count WILL go up with a cold or infection. I researched that. I am not sure what a cold or infections will do to ast''s and alt's though. Hunt's did not go up much, from the 30 to the 60 and 90's but since he is reducing his pred and everytime he has done that before he ha had a flare-up so it scares me. I worry too much. Hope Eylse is doing good and that ya'll can have a really good weekend.

Rosemary

[Guest guest]

Hi April,

Thanks you so much for the well wishes. I keep you in my prayers as well.

God bless you,

[Guest guest]

Hi April

Still in the catch up mode here....

Thanks so much for writing and thinking of us...

Our Chicago trip is for next wed..taking the train..we will be getting there on thur and my daughter who lives there(le is 26) will be meeting us....On sat my husband, daughter and I will be going to Milwalkee to see my other son....who is performing there in a big competion....Ty will be staying in Chicago with my daughters boyfriend....Then sunday we will all be going to see him for finals....then all back to les...including (son) and his girlfriend....We will all be there for monday and then we...Bob(husband),Tyler and myself leave.... and his girlfriend will be staying a couple more days.....

The school thing is still not completely straightened out....Ty was supposed to go today...but woke up with spleen pain again so took a pain pill and went back to bed....We will see how he feels when he gets up...

As far as the medicAlert...I decided to get that when Ty was driving more and going to work and there was the chance that he would be going to the hosp...with out me with him...attached at the hip.....LOL......I wanted to make sure they knew all his meds and all the problems etc....If you want to know more about the program let me know I can sent you the info....

Remicade is an INFUSION....not a transfusion...

Ty takes Remicade for his Rhuematoid Arthritis and Crohns....He had started taking it in Nov of 99...before that he had been giving himself injections of Enbrel...but that does not help the Crohns and in Nov of 99 he flared and they decided to give him Remicade....He got them every month for 10 months and in August he started the infusion and went into aniphalactic shock...very scary.....so then that was the end of that...The 10 months that he was on it he was great...I mean really great....But once they stopped things starting going down hill.....and just continued....They decided to try another Remicade when he was in the hosp ..in the end of Jan....He was pretreated with the pulse of steroids....1000mg of pred. IV....and benadryl and tylenol...and they did it in the ICU....just in case....they also ran the infusion very slow...so it took about 4 hours to get it....He did ok..so they are thinking of repeating in April....

Unfortunately Ty is not feeling very well this am...spleen pain...on the right side..so we will see what happens....

How is Elyse doing today...I hope you both are having a great day...

Talk again soon...

Luanne Ty's mom

[Guest guest]

Goodmorning

So I have 6 days and you have 5...Where abouts in Florida are you going....and for how long....

We love to travel...we have a pop-up camper...we used to go all the time...when the kids were younger...then when they got older it was harder to take them out of school and then my husbands jobs...doesn't allow us to get away very often...The last 2 years when my son was going to Dayton..(where finals for the performing group he is in) I went with the group on the bus...and Bob and Tyler stayed home...This year the finals are in Milwalkee and it is ' last year with them...they are folding...so I was not about to miss his last time...So I said ...we are all going...no matter what....Well then Dani(what we call her) and Vic(her boyfriend) gave us train tickets for our Christmas gift....So I told him...no excuse now.....take the time off....

Then it turns out that Tys Band trip is May 10th thru the 13th...They are going to Cleveland...to some musical festival and then the Rock and Roll Hall of Fame...There is no way with all that has been going on with Ty that I would let him go...with out me also....2 years ago(the band takes a trip every other yr and goes to NY for a paly and dinner on the off yr...)they went to Canada....He had just been diagnosed with PSC and AIH and there was no way this crazy mom was going to let him go with out me being there just in case.....The band directors were kind of glad that I was planning on going because they really didn't want to be in charge of his meds...at the time he was taking Enbrel..an injection...and they didn't want him to have it in his room with 5 other boys....HS age...god forbid....So I went....Ty didn't mind too much because I told him I was going to basically ignore him...just be there if needed...which is exactly what I did...totally stayed out of his way....

The year they were to go to NY he was really having RA problems and could not walk around the city as much as they do...So I told him that his dad and I would take him and drop him off at the theatre and then pick him up after the show and take him to the place they were all going to eat....But when the time came he was really doing badly....and even sitting in the theatre would have been painful....so he missed it that year....

So it looks like we will driving out to Cleveland in May...Ty should be able to do the bus....but if he gets uncomfortable or doesn't feel well he can ride with us for awhile...I wouldn't want to put anyone in the position of having to know what to do for him....

and I wouldn't want Ty to feel bad or actually get sick and not feel comfortable talking to on of the chaperones....

Glad that Elyse is feeling better...is she also going on the trip to Florida?...

I know what you mean about getting packed....but since we will be taking most of our everyday clothes I will be waiting until next week...Had to get all Ty's scripts filled so there would be no chance of running out....get the mail stopped...and get someone to come over and feed the animals....and let the dog in and out...

So Elyse is getting her license soon....YIKES....Good luck....Ty is a very good driver but there are so many nuts out there that I am always worried...I love to hear him come in the driveway...

Well lots more to do today....Hope to count down some more with you...

Luanne Ty's mom

[Guest guest]

Hi April: Please refresh my memory how old is Elyse? Thanks, Genny

[Guest guest]

April, where in Florida are you coming? I live about 40 minutes from

Disney World in a small town named Haines City. If you are close I would

love to meet you and your family.

Love, Genny/Jodi's Mom

[Guest guest]

We will be in New Port Ritchie, Just north of Tampa. Sorry for the late

reply, worked an 11 hr day yesterday. Rotten timing for the other manager

to get sick. Is HC by New Port Ritchie? As I recall, it must be 1 1/2

hours one way? We will be there the 3-10th. Leave tomorrow morning 6:15am

the taxi will be here. Suppose I will have tons of emails when I return but

cant bring myself to unsubscribe.

BTW am very impressed by your DR Levi. Impressive that he called while you

where in the visit with the other Dr. Really has his act together &

thinking of your/Jodi's best interest> Please reply if your get this

today; ) April

Re: [ ] Re:April

> April, where in Florida are you coming? I live about 40 minutes from

> Disney World in a small town named Haines City. If you are close I would

> love to meet you and your family.

> Love, Genny/Jodi's Mom

>

>

>

[Guest guest]

Elyse is 15, a freshman.

Re: [ ] April

> Hi April: Please refresh my memory how old is Elyse? Thanks, Genny

>

>

>

[Guest guest]

Welcome back...

Glad to hear that your trip was so nice....Even though we were in Chicago and Milwalkee it was really warm...really....very high 70's and 80's....really weird..we took our winter coats and gloves....thinking the windy city....well it was windy one day but so warm....

I can imagine moving into a house one week and then having company...or being company the next....must have been interesting...not sure where everything even belongs yet....

Glad that Elyse is doing well...love to see those #'s come down...especially if the prednisone is also coming down....Yea...

Don't forget to mention to the docs about the posibility of migraines....especially if they are always behind the same eye...and if light and noise is unbearable...

Talk to you again soon...

Luanne Ty's mom

[Guest guest]

Thanks April, hope your doing well.

God Bless, Genny & Jodi (9 days and counting)

[Guest guest]

April,

Elyse sounds like a great girl and that means you must have been a great Mom. I am happy for both of you and your jobs.

God Bless You all

Rosemary

[Guest guest]

Hi April,

I am afraid this has been a hell of a year for Hunt. He is doing really well with how he feels. Physically he looks great. More than anything the problem has been with his thinking. I have told you before that when Hunt graduated from high school he was a National Honor Student. His IQ is very much above normal, he is a very bring kid BUT first semester this year it was C's and D's and this semester it was all D's. He never missed more than 2 classes and he studied a lot. He just cannot focus. We have noticed this in other walks of his life also. For example, his organizational skills have really decreased. Also his memory. It has been mentioned that short term memory can be affected by this disease and for Hunt it has been a BIGGIE. For this reason he had decided not to return to a four year school for has chosen to attend a community college at the beach. He has always loved drafting and I also had a feeling that he would return in the end to that anyway but he is doing it quicker than I expected. He is going into the architectural technology program. We all think this is a wise decision and we hope he can do well in it. He will not have the reading that was so much required focusing before, like history, English and, etc., So much of this will be labs and hands on. Just hope his short term memory will not be a problem. Hopefully with repetition things will be easier. We just moved him to his new apartment this past weekend. I think he will be happy there. He loves Wilmington, NC and the beach and he can scuba dive which he loves also. He had a Rottweiler though that is 6 months old. He bought him when he was 6 weeks old. He is a good dog but still.................... BUT Hunt loves him so much and it has been good for Hunt as for accepting responsibility, BUT A ROTTWEILER, He starts obedience training this week. I really want to make sure that Ox is tame and stay a baby likes he wants him too.

Oh April, I definitely wanted to remind you that there are many people that have gone to law school or many other things with this disease. is in law school now. So do not be afraid that it will affect Elyse this way. Remember how it affects different people different ways. It has just now started affecting Hunt's moods and he recognizes it. He flies off the handle real easy and 2 seconds later he is just fine. Hid girlfriend is having a hard time dealing with this as you can imagine and Mom and dad too. He will be 20 on June 9th so I am sure we will go visit then. He is three hours away so that is not too bad.

Thanks so much for thinking about Hunt. I have been so tied up these last few weeks that I have hardly been able to even read the messages. I hope all is fine with Elyse are looking forward to a fun summer. She has a great job it sounds like. My kids were both lifeguards and had great summers doing it.

Much love and good health to you and yours

Rosemary

[Guest guest]

Hi April: Just speaking from my experience and what I was told cyst are not

at all uncommon. When they did my angiogram to see if I could be Jodi's

donor they found cyst in my liver and I was told this would not keep me from

being a living donor because it was not uncommon at all.

I did not read the post that lead to your reply and we may not be even

talking about the same thing and if not please excuse me. I am so glad they

found your daughters problem so early in her life. I keep thinking if Jodi's

had been found earlier she wouldn't have had to have a transplant at 28 and

would have responded to the medications. Of course we will never know that

now but we do know that her platelets were way down after she had her son

three years a go.

We just have to be thankful everything has worked out so well so far.

Take care, Genny

[Guest guest]

Thanks April for suggesting the video, I am going to get one from the

library for a trial walk, lol. Your struggles with your doc seem so

energy and time consuming I did have to laugh a little at your humor, it

would all drain and leave me with no energy. I would have just walked

out on him and reminded him not to bother sending a bill. My husband

ans I actually did that once concerning a small town doc here in rural

Utah. They DID NOT send a bill and we still manage to smile at each

other at THE Main Street stop light. Some folks just seem to be a ''out

to lunch'' in the compassion department! Take care, Louise.

> This guy is nuts. He put me on Methotrexate 4 tabs

> >once a week and folic acid. He increased my pred. to 10 mg a day. I ask

> >him about going back to work due to the fact that I lose my health

> ins. the

> >1st of June unless I pay $305.00 a month. I told him that my kids would

> >like to eat next month. Well he just says do what your FP tells you. I

> >don't deal with time off work or depression. He said to make an

> >appointment with my FP and get anti depes. meds.. I told him to read my

> >chart Duh. I am already on them and my Xanax is not working. I

> told him

> >that I was so mad I could rip his office apart. He told me to get

> ahold of

> >myself. I felt like telling him. OK but I'll do your first.

> >

> >

> >

> >Icing on the Cake.

> >

> >I told him while crying and feeling faint that I was going to hollar out

> >the window for Superman. His eyes got big and his chin dropped to his

> >ankles. At this point he thinks I am crazy. I was being

> irrational. Like

> >the Dragon isn't. He said " Well you just want a quick fix for this

> and I

> >don't even know what causes it so your are going to have to learn to

> deal

> >with this and quit saying crazy things. " So I told him that I was

> really

> >going to cry out to Superman. He didn't have a clue. I told him

> about the

> >Stills support group. He proceeds to tell me that being in a group

> like

> >this can be very dangerous and people say all kinds of things. Most

> people

> >think things and they appear. I must have developed a great imagination

> >after 22 years. Well I said " Pop-eye, Blow me Down, Olive Oil is

> Not very

> >pretty and neither is the Dragon. " At this point he was so

> confused. He

> >said I was talking out of my head. I ask him if he breaths fire

> because he

> >acts just like someone I know well as well as all those at Stilligans

> >Island including Superman and Patty Melt. He told

> >

> >to take my scripts and go home. He is still confused, I'm laughing

> my butt

> >off and I fired him. I turned around and looked at him and said " Guess

> >what Casper, your don't scare me. Your fired. "

> >

> >

> >

> >Well now you all think I am crazy but I thought his insensitive

> character

> >needed a name. Casper- I laughed and cried all of the way home.

> >

> >

> >

> >I see a new Rhuemy the 30th. Just before my insurance cancels. Wow.

> >

> >Can anyone tell me what to expect tomorrow when I take this dose of

> >Methotrexate? He told me to read the insert with the script when I

> get it

> >filled. I am considering waiting until I see her to change my meds.

> >

> >Any opinions.

> >

> >I hear that she understands this disease and is very understanding.

> >

> >Cross Fingers. I may just have to call her Cinderella. Ha.

> >

> >

> >

> >PS. I bought Walk Away the Pounds Videos and I love them. I walked 2

> >miles today instead of one. Right in front of my TV in my living room.

> >Better than nothing. On www.womansday.com on 5/27/03 the article

> entitled

> > " Come Walk with Me " will be posted that leads you through 6 weeks to a

> >thinner you. It is also in the current issue of Womans Day magazine at

> >your nearest retailer. Investing in these videos, $30.00 has given me a

> >little self esteem that I am trying and when I get up to three miles

> a day

> >I will be so proud of myself. May be a while. This is very low

> impact and

> >exillerating to accomplish just 1 mile in a 15 min. workout. Read the

> W.D.

> >article and you decide. I'll keep you posted on progress.

[Guest guest]

Thank you Donna. I needed to hear that, I feel better already. I think I will

be one to follow in your shoes as to being a slow loser. I guess I knew that

but just needed to hear it from someone.

April Piper

6/30/04

Dr. Rutledge/Dr. Doroghazi

Bay City, Mi.

272/269

Re: April

April I don't think their is a " normal amount " Three of us had surgery the

same day. After one week one person lost 2 lbs, (guess who??? the Queen of

slow losers, me), one lost about 7 lbs and one 5 lbs. Don't pay alot of

attention to the scales. It will come off in " your " time.

Donna Pinto

Dec 9, 2003

273/215

[Guest guest]

aww that is so cute , thank you

April

--- Ann <the_saboma@...> wrote:

> Message

>

>

>

> Patience and Tolerance

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Good friends are hard to find, harder to leave, and

> impossible to forget

>

>

>

>

__________________________________

Discover

Stay in touch with email, IM, photo sharing and more. Check it out!

http://discover./stayintouch.html

[Guest guest]

April, I’m not the moderator, so it’s

really not my place to say, but most public discussion boards prohibit the

solicitation by anyone to sell anything—even if they end up giving it

away—through their participation on a public board. Most boards carry a

caveat to this effect; this one does not, but that doesn’t mean you can

come here and try to sell your book.

No one’s harassing you; only telling

you what’s up on the Internet.

If you want to sell your book, it looks like you’ll have to incur

promotional costs just like everyone else who wishes to sell a book. Have you thought about learning how to

drive traffic to your website rather than violate the posting protocols of public

discussion boards?

By the way, once you post an excerpt from

your book on any public discussion board, anyone is free to forward it all over

the universe if they want to take the time to do so and there’s nothing

you can do about it.

[Guest guest]

So you’re willing to sell your book

on the honor system. So what? Again, this is a non-commercial discussion

board (I think).