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Active member
Sep 28, 2006
Loved one DX
San Jose
Hi all,

I am just writing to ask for prayers from those of you who are willing. Tomorrow we go see the pulmonologist for my husband. Four months ago, his lung capacity was about 38%, and they told us that if, by the next appointment it was below 30%, that we needed to consider the trach/vent. He has continually deteriorated in every way in the last four months, requiring his bi-pap, pretty much all the time. He is very weak and is starting to swell in his feet and legs. His voice is weak (although he still manages to deliver his "one-liners"), and he chokes frequently. He has the PEG already, and takes all of his meds and fluids through it. He still manages to eat when he isnt' too tired, and that brings him a lot of joy. His legs are virtually useless now, and his arms are not far behind. He is so precious to me, and never forgets to thank me at night before he drifts off to sleep. I will be honest, I am scared about this please, if you think of us tomorrow, I would appreciate it.... Much love and prayers for all of you very brave people, Teej
Teej, your husband and you are very much in my prayers. I pray that you and he are given ample strength and courage to face whatever lies ahead, and that you both are graced with certain, unwavering faith and experience of God's love for you. Sharon
I will pray for your husband and for you.
I feel your fear and I understand - this is such a difficult road.
Hi Teej. I'll be sending good wishes and warm vibes your way tomorrow. SOmetimes I wonder where we find the strength but it always shows up when we need it most! Cindy
I am praying for you and your family to have the best doctors visit possible.

Hang in there

Hi Teej. You know we are thinking of you and hoping for the best.
May God bless you with special peace and love during this time. We have all been there and can identify with what you are saying. You are not alone. A special Hug for you and your family.
God Bless
Capt AL

Teej I will pray for your husband, may God bless you both.

All the best

Husband's caregiver
DX 10/17/06
Baja California, Mexico
Thank you all so much for your prayers. It appears they want to do the trach surgery asap. His lung capacity is 33% and they feel he is entering the "danger zone". They wanted to schedule the surgery right then and there, but we are waiting until after we speak to the head of the ALS research clinic at UCSF next week during Jay's appointment. They have said they want to order the vent, so it will be ready to go. We are treading unknown waters here, and are a bit nervous about the whole thing, so we would appreciate your continued prayers, suggestions etc.... Thank you and God Bless you all! Teej
Hi Teej- I imagine a lung capacity of 30% leaves a person in a very weak state. Let's hope things improve a little if you all decide to do the trach thing. Best wishes, Cindy
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