Re: to Hillary and friends from Gwynne

[Guest guest]

>

> Gita,

> I'm sending all my best thoughts and wishes for a

> successful delivery for Priya and a perfect, healthy

> grandchild for you... hopefully that has happened

> by now. What an exciting time!!

>

> ,

> I'm thinking of you and am very glad that the CMV

> is getting better. It's great that you're able to be as

> active as you are. Here's hoping you feel a little

> stronger every day.

>

> ,

> It's so good to see you posting again. I wish we lived

> down the street from each other instead of across the

> pond.

>

> Lou,

> Hoping you're having a good week and that you're

> in better spirits than in recent days. Having a chronic

> and progressive disease is an exhausting rollercoaster.

> Are you sleeping at night?

>

> Jane,

> I think it's remarkable that your PFTs have continued

> to improve. That's just wonderful. Do you FEEL better

> as well?

>

> May,

> I'm so happy for your news of a grandchild on the way.

> I can't wait for that life experience. It has to be so

> special and fun. Congratulations to nna!!!

>

> Sher,

> Welcome back home. I'm glad you had a good time -

> you deserve it!!

>

> ,

> Welcome home to you too. I love your posts - your big

> heart always shines through.

>

> Peggy,

> I hope you are staying well! No more of that sick business!

> Have you been able to work on your Bibles much lately?

>

> Beth,

> Your posts to everyone, especially those with pressing

> questions, are always so helpful and thoughtful. Your

> caring nature is always evident, and I'm grateful for you.

> You are a wonderful moderator.

>

> Hillary,

> Your post really tugs at my heart.

> Welcome to the board, although I'm sorry you need us.

> I had a single-lung transplant on April 3 this year for

> IPF/UIP (confirmed by VATS biopsy in 2004). There was

> a RADICAL and immediate change in my life for the better

> after that, as my activities are no longer limited and I no

> longer need supplemental oxygen. Before transplant I was

> on 15-18 liters per minute continuous oxygen, which

> is a VERY high flow. My doctors feared I would not live

> long enough to be transplanted, and I was probably within

> weeks of dying when I got " the call " . But I was 53 years old

> when I was diagnosed and obviously beyond my child-bearing

> years. I have done exceptionally well since Tx, except this

> summer when I developed a blood clot on each lung when I

> made a trip to Colorado with my doctors' blessing - in

> retrospect, probably not a good idea. I have been very

> fortunate with my medications and overall health. My only

> real complaint is that I have tremors as a result of my

> anti-rejection medication. But I can BREATHE.

>

> My heart goes out to you, facing the difficult decisions

> before you. I know what it's like to desperately want

> children - mine are now 24 and 28 - and I know

> plenty about what it's like to have IPF. But I can hardly

> imagine dealing with those two issues at the same time

> or at your age. I'm glad you have a supportive and loving

> family - your support system is vitally important at every

> stage. I have been so fortunate to have a close family as

> well. You are blessed to have a partner with whom to share

> your difficult days.

>

> I hope you'll get as many opinions as you need to help

> you make the informed choices that are best for you.

> And I agree with Bruce that you might consider, if you

> haven't already, discussing your situation with a mental

> health professional. Most PF patients also suffer from

> some degree of depression - it seems to go with chronic

> illness. Most of us are on anti-depressants or anti-anxiety

> meds, or both.

>

> The choices facing you are intensely personal ones,

> and no one but you can decide what's best for you.

> I admit to being surprised that you aren't on

> supplemental oxygen if your doctor wants to list you

> for transplant (but that's a good thing). I hope you

> have a pulse oximeter to keep track of your sats, though,

> whether your doctor recommends it or not. What

> medications, if any, are you on?

>

> I wish I could help you in some way, but I will be

> thinking of you and hoping you find strength, wisdom

> and guidance in the days ahead. This board is a fine

> group of caring and informed people who will be there

> for you whenever you need them. You sound like a

> strong woman, and a strong advocate for yourself. Those,

> as well as a strong support system and, in my opinion, a

> strong faith, will get you a LONG way. Those who manage

> the best, as I'm sure you know, focus on their capabilities

> instead of their limitations. By the way, are you or have

> you ever been in a pulmonary rehab program?

>

> Most of us find this illness a full-time job, what

> with keeping medical records, going to doctors, trying

> to insist on the care we deserve (including corresponding

> with us in a timely fashion, which is often frustrating for

> most of us), dealing with oxygen suppliers, taking meds,

> and just getting through each day (for example, doing

> things like taking a shower), as well as facing and mourning

> the gradual loss of independence and reduced activity

> that result from PF.

>

> Take care and please keep us posted.

>

> Hugs and blessings,

> Gwynne Single-lung Transplant on 4-3-08 at

> UTHSC - San Fort Worth, TX

>