Comments | colinportnuff: (без темы)

colinportnuff

(Untitled)

Jan 24, 2007 19:20

My respiratory status seems to be declining rapidly. Here is my current dilemma. I am getting about four hours of sleep a night. This is because of the duration of the drug effect of the hyocyamine. I get up about five, Laurie gets up at seven and gives me my morning meds.

During the day I get very sleepy. If I doze off I wake up soonafter, ( Read more... )

Comments 6

garneyloom January 25 2007, 20:43:24 UTC

oh Colin, I'm sorry to hear this. I can imagine that being short of breath would be the worst. You know that all my love is with you,

Andrea

colinportnuff January 25 2007, 22:57:14 UTC

Thanks.

lawsy January 26 2007, 16:35:34 UTC

It really isn't fair that breathing is so essential to life! Can you not get some of that extra-oxygen-rich air? You know, the stuff that comes in tanks? Also, take drugs for the fear, valium maybe, they're fun!

colinportnuff January 26 2007, 19:41:09 UTC

Oxygen doesn't help us -- it actually depresses respiratory drive. Since our problem is the diaphragm, not the lungs, we need help getting air into the lungs.

As for the drugs, maybe. My neurologist is more enthusiastic than I am about them. We do have medical use of marijuana in Oregon though.

sweetcheecks February 1 2007, 00:23:01 UTC

Sarah and I think of you regularly (I am actually here in phx with them all now). Her parents wonder how you are, too, so we get to share with them what you share. On behalf of all of us, thank you for sharing, good news or bad ( ... )

Sarah's Dad here... anonymous February 2 2007, 06:13:33 UTC

Hi Colin, I have heard so much about you... I noticed a couple of things that I might have some help with. We are pretty succesfully using Lorazapam to fight the scaries. I don't know if they work or just bomb you to the point of nodding off, but seems to help. This sounds pretty rudimentary, but are you using IV sponges as kind of an absorbant gasket under the collar of the tube? We had similar issues until someone suggested IV sponges. We use Kendall's Excilon number 7087, one at a time (they are packaged 2up) and change them morning and evening. Darrell's stoma finally healed up and quit irritating her. My normal email is jturnerinc@yahoo . com I suppose I should sign up on live journal, eh? You are in our prayers, my friend. We understand what you are going thru. All our love, Darrell, jt, & family.