End Stage Idiopathic Pulmonary Fibrosis.

[Maine-ah]

This is what my Mother has been diagnosed with.

She's 66 years old, and my last parent. My father died just before his 50th birthday. I'm 37. I'm not ready for this, and neither is she.


fuck. fuck. fuck.

[MiddleFingerMom]

1. I'm very sorry to hear this.

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What is the prognosis for "endstage" as far as time?
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Is she on a transplant list?
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Treatment of choice USED to be steroids, but as I remember,
very little benefit and lots of adverse side effects.
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Spend as much quality time with her as you can -- enjoy the
good moments... MAKE as many good moments as you can.
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Make sure your daughter participates in as many of those as
possible. She will feel better for that in the future -- and
it will PROBABLY be good for your mom.
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I'm sorry you and all involved have to go through this.
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:hug:
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[Maine-ah]

9. as for time, we should find out tomorrow.

biopsy is tomorrow. Her lungs look like a honey comb. Transplant is the last option, and for everything I've read and asked at this point, it's generally reserved for those 60 and under. So, there will be meds and oxygen...and hope she sticks around for a little while.

On top of all this, she's also suffering from a couple of other physical medical issues, and depression, which is rather common for two of her medical issues.

So, she's on oxygen, when she went in her oxygen level was at 70, they currently have her at normal range at 93. They gave her an inhaler, which is a steroid...problem though, is she is freaked out to use it, because my father was actually addicted to his (which was not a steroid) and that is what killed him. He died on the way to the hospital, she was driving and he passed out and fell over on her on the way to the emergency room. He refused to take an ambulance.

Her house is just about an episode of hoarders...my brother and I have been doing all we can with cleaning it, and mom has turned all of her financials over to me to deal with, and now my brother is sick. At this point we have decided to hire professionals to deal with the house.

I feel like I'm sleep walking...bad dream.

I will also post my thanks to everyone here, I'm in and out, trying to take care of my own house, child etc...and all of this...I appreciate all the vibes you can muster to get us through this. Those lounge vibes are some pretty serious stuff, and I just want to say thank you for all of them. :grouphug:

[RedCloud]

2. I am sorry to hear this.

I lost 3 of the 4 all last year. Maybe the depressing economy hurts their survival chances?

hang in there! :hug:

[GreenPartyVoter]

3. I'm so sorry! *hugs* I spent most of my time after mom's surprise

heart attack wandering around in shock saying, "But I'm too young not to have a Mom. I'm not ready!" I guess it was slightly easier with Dad passing 5 years later. I knew he'd been in poor health, and part of me felt that he was finally at peace after being so sad without Mom.

I hope that you and your mom can fit in as much love and talks as you can in the time she has left. I wish it didn't have to be this way for you and her. :cry: :hugs:

[dawg]

4. I'm so sorry.

That's too early, especially having already lost your Dad.

:hug:

[Gormy Cuss]

5. I'm so sorry, Maine-ah.

I hope that her doctor has suggested referrals to a specialist in a bigger city -- much as I love Maine, the medical expertise in the state is still somewhat limited because the small population means that there just aren't as many cases of any given illness as there are in big metros. Even MMC doesn't have the most well-versed specialists.

The end stage diagnosis may preclude her participation in clinical trials but that's another avenue to explore:
http://clinicaltrials.gov/ct2/results?fund=0&fund=1&cond=%22Idiopathic%20Pulmonary%20Fibrosis%22

[BlueIris]

6. ((( Maine-ah )))

Moms are important.

[tblue]

7. Oh no!!!

She's young, too. Oh, Maine-ah, I am so sorry, sweetie. :hug: to you both!

xox...

[CaliforniaPeggy]

8. My dear Maine-ah...

Oh, sweetie...this is such a blow to you and your mom...

I hope whatever time she has left allows you to spend lots of time together, making the memories that will help sustain you after she's gone...

:hug:

[mainegreen]

10. That's terrible.

I'm sorry. :(