Re: Tina, good news from the transplant team

[Guest guest]

Oh, Joyce, you are so welcome. Yes, strong women for sure! I am

doing much better since I ended my Prednisone short course and the

antibiotics. I met with the transplant team on Tuesday at UPMC. I

have been so excited about their news. They have decided to list

me! Even though my antigen count is high, and even though my weight

isn't perfect yet, I have lost 25 pounds, and showed them that I am

serious. So, they are going to list me! I will find out the details

next week. My coordinator is supposed to call me on Thursday. I

know the transplant will improve my quality of life. I know also

that it will mean I will have different problems to face each day. I

am thankful that I may receive such a blessing. I know God has plans

for me and I look forward to whatever that may be. I have had some

serious discussions with my daughters and I am trying to word things

properly for Kaleb so that he understands, without becoming

frightened. In any event, things are going well, and I am feeling

much better. The day at the transplant center was exhausting, as it

always is with the tests, retests, and then more tests. But, I

enjoyed the rest of this week with my daughters. We spent a couple

of days shopping for 's wedding reception decorations and so

forth. The wedding is April 19th. Then, she and I are headed for

San on May 1st, and then later in June I will be headed to

Houston for the Pulmonary Hypertension International Conference. I

was awarded a scholarship to attend the conference, at no cost to me,

including air-fare, hotel and registration for the event. I hope to

learn as much as possible and use the information to advocate for

research funding and awareness.

Thanks for listening and I sned prayers your way every day!

God Bless,

Tina

IPF 04/07 PH 11/07 Ohio

>

>

> Tina,

>

> Thank you so much for the Hallmark card and the very sweet note.

Thank

> you so much for the kind words of encouragement. From one WV girl

to

> another....you made my day.

>

> I have been worried about you. Are you recovering from your cold

(or

> flu)? You are so brave and I am so proud of you. Those old hills

breed

> strong women, huh?

>

> Hugs, Joyce D.

> Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary

Hypertension

> 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)

> Rejected for Transplant 2006

> .....I will not forget you. Behold, I have engraved you on the

palm of

> my hands. Isaiah 49: 15-16

>

[Guest guest]

Oh Tina that is good news.

If I remember correctly Kaleb is 5 isn't he? He's about the same age as Lili I think. Anyway, I try to take Lili with me to my appointments. She's met my consultants and has been there when I've had blood tests. It helps her to understand what's happening to me, and she's less frightened when I tell her I have to go to hospital. If it's only for an appointment I can tell her what they are going to do to me, take blood, just chat etc, and she knows what I'm talking about. I know some people don't agree with taking a small child with me, but it works to take away the fear for her. She'll be seeing me have my lung function tests in a couple of weeks, but I won't be taking her to the transplant team simply because it's going to be too long a day for her. But she knows that mummy is hoping to have a new set of lungs as that will help mummy be able to more things again.

Also I've bought her this book http://www.amazon.co.uk/Inside-Your-Body-Usborne-Books/dp/0746070055/ref=pd_sim_b?ie=UTF8 & qid=1206184084 & sr=1-10 which is great for her age, it's a pop up, and has enough info for her to have a better understanding. It has also helped explain what's happening when other family members have had health problems.

Love Ze xx> >> > > > Tina,> > > > Thank you so much for the Hallmark card and the very sweet note. > Thank> > you so much for the kind words of encouragement. From one WV girl > to> > another....you made my day.> > > > I have been worried about you. Are you recovering from your cold > (or> > flu)? You are so brave and I am so proud of you. Those old hills > breed> > strong women, huh?> > > > Hugs, Joyce D.> > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary > Hypertension> > 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) > > Rejected for Transplant 2006> > .....I will not forget you. Behold, I have engraved you on the > palm of> > my hands. Isaiah 49: 15-16> >>

[Guest guest]

Sher, Zena, Tina

I so believe in honesty with kids. Don't underestimate their ability to

see through false stories. Fear of what they might imagine is even worse

than the reality. They deserve time to absorb and learn just like you

and the rest of the family. I just see in Kaleb and Lily too children

who are going to adjust to whatever happens. Oh, they could have

difficult times, but at least they will understand. There are few

sources of anger one can carry to adulthood stronger than feeling you

were lied to-my mother never told me what was going on. Its the same

thing as waiting to tell even an adult child and then wondering why they

are struggling with it. Well, because you've had three years to deal

with it and they've had three weeks.

Sometimes when we delay telling others its truly because we believe it

is better for them. I don't think it it. But sometimes its more because

we don't want to face telling them. I have only had friends and family

to tell so I can't imagine telling a child. But, I do praise both Tina

and Zena for the way they've handled it with their children. Yes,

they'll ask hard questions, but at least now they can ask. Imagine them

having to carry those questions inside because they couldn't feel free

to ask them.

> > >

> > >

> > > Tina,

> > >

> > > Thank you so much for the Hallmark card and the very sweet note.

> > Thank

> > > you so much for the kind words of encouragement. From one WV girl

> > to

> > > another....you made my day.

> > >

> > > I have been worried about you. Are you recovering from your cold

> > (or

> > > flu)? You are so brave and I am so proud of you. Those old hills

> > breed

> > > strong women, huh?

> > >

> > > Hugs, Joyce D.

> > > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary

> > Hypertension

> > > 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)

> > > Rejected for Transplant 2006

> > > .....I will not forget you. Behold, I have engraved you on the

> > palm of

> > > my hands. Isaiah 49: 15-16

> > >

> >

>