Fingers crossed for minimal changes!

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ruthiep

Distinguished member
Joined
Feb 28, 2011
Messages
174
Reason
Loved one DX
Diagnosis
01/2011
Country
US
State
AL
City
Enterprise
Heading to Huntsville tomorrow for Scott's 2nd appt. at the ALS Clinic. Please keep us in mind. Hoping his liver #'s come back such that he can remain on the Rilutek AND that my imagination is completely wackadoo and that his breathing functions, etc. haven't changed! For once, I would have no problem being told that I'm a little dramatic and imagining things.....prayers would be appreciated! Hugs to all!

Ruth
 
heres prayers that everything works out. Hope you have a safe trip. :)
 
I definitely know what you mean by hoping you are imagining things and being overly dramatic. Hate those trips to the ALS Clinic and they start bringing in the equipment to measure strength and breathing levels. Seeing my husband's face and the disappointment when there is a decline. Will be thinking about you an hoping for the best.
 
I'll be thinking of you and hoping everything you're hoping. Yasmin
 
I hope you get some good news!
 
Safe journey and good luck at clinic.
 
Travel safely, and let the pros tell you. Wouldn't it be nice if we were all imagining this!
 
I definitely know what you mean by hoping you are imagining things and being overly dramatic. Hate those trips to the ALS Clinic and they start bringing in the equipment to measure strength and breathing levels. Seeing my husband's face and the disappointment when there is a decline. Will be thinking about you an hoping for the best.

Please keep in mind that sometimes the measurement has more to do with the technician than your husband. Our first visit, the reading was 65% and our second visit was 4%, and she took the reading 3 times! We have our 3rd in a week or so, and I am very, very confident that he will be well above 4%.......probably closer to the 65. His breathing only seems to alter in the slightest bit when he is laying down.

I'm just saying, don't let it break your day.
 
Prayers go with you. I know the feeling. Everytime my husband blows in that tube, my heart stops. Everytime he steps on the scale, my heart stops. Everytime we go, I pray no changes. Slooooooooow progression. So many on this forum have such rapid deteriation. No matter how bad this disease is for one, it is worse for another. So glad we all are helping each other through.
 
They had me blow in the tube with numb, weak lips. FVC 85. Rose posted after my visit that they have masks for us weak lipped folks. I can't believe no one suggested the mask at the clinic. This is why I love this forum
 
Good luck and safe trip! Will be thinking of y'all!
 
Praying for good news and a safe trip.
Linda
 
Ruthie, hope your appointment went well today
 
Ruthie, hoping that your appointment went well and you got good reports. Clinic visits were always tough for us. It was the unknown that was so scary. Please let us know how you are doing.
Thoughts and prayers are with you.
Janis
 
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