Hi all !!
What a day!! I was on edge all morning, sick to my stomach in anxiety.
The call came in about 11:30 and I am scheduled to be admitted (that part was a surprise) for 3 days on March 8th. I will spend the morning with the transplant doctors and the nurse, Debbie, and no doubt a few others. I have already reviewed the 24 page consent form, nothing really out of the ordinary except for the trial drugs .... which ... risks and benefits, weigh for the most part in my favor.
I am just going to do a brief overview of what will happen now. I will be admitted for the three days of testing and evaluation. Then ... it is wait, another 30 days for the results to come back and I am determined a go, I am then placed on the donor list. Now ... it could take a month or it could take a year to get a suitable donor. I was told that is how it works with any transplant. Once I am placed on the list, I will have to carry a pager with me 24/7 until the thing goes off. I am then to get to UCSF ASAP for 5-7 days inpatient and up to .... this was a killer .... 42 days to remain in the San Francisco area. Not sure how we are going to pull that one off, but ... I got some time to work on the fundraiser stuff. Today, a friend of mine, whom I met through my mother, donated a quilt to be raffled off. It was one of my favorites in which she told Hillary she was just going to give it to me, but decided that it would be of much greater use to raffle it off for the proceeds. It really is beautiful!!! 600 tickets will be sold for it at @2.00 each or 3 for $5 with a total of a little over a thousand dollars! (This woman has sold quilts for as much as $3K) I will post a photo when Hillary has one for the fliers. She brought it to the office today and sold $15 bucks worth just unfolding it!! She also ordered the bracelets today .... baby blue ... on the idea of the yellow Lance Armstrong bracelets ... they are going to be really cute. They have a small handprint on them with the words "HOPE ... for a cure" on them. I believe she said we were going to try and shoot for $3 or 4 dollars a pop.
So ... Deb-Deb has been warned that she will have to spend 3 of the 6 nights alone in a hotel .... this is part of the process in which I am going to feel bad having people left to fend for themselves in a strange city. To me, this sort of thing has never really bothered me, I have done this too many times on my own to count or even remember, but for me, it is no big deal, but I don't want to be worrying about those that have chosen to travel with me. The whole 42 days thing is going to take some getting used to ..... I do, however, remain to have a very good feeling about the outcome for me, and the future treatment of Type 1. I had to laugh at the part that stated they were going to run a pregnancy test !! ..... LOL .... I am thinking this can really be omitted!! No parts, no partner, no pregnancy... PERIOD!! .... oh ... none of those either ... LOL.
Ok ... well ... I have to go to bed now. I have been in the doctors office with my father from 3:45 till 7:00!! I often wonder who they are trying to stroke out, me or him?? Anyway ... I have to make up an hours time tomorrow for leaving to tend to him, and I have a ton of things to put in order, along with an audit at the end of this month to get squared away prior to leaving for a week. At least I will have some time in between to get a grip.
Bee .... Thank you for all your enthusiastic support. I have wondered what sparked your interest in my adventure, but am so very glad you have jumped on in my support. It really does mean a lot.
Deb from MA .... you too!! Your interest is double edged and I think that is just wonderful!! .... not only that, to have remained in the circle of friends for so many years, it a true testament to what can be tolerated .... LOL ..... I know that I am nor have I been an easy person to deal with at times, but I really do not try to dwell on it as sometime, I really have no control over what my body wants to do. Now that is true more than ever. I lost most of this weekend to low blood sugars .... totally gone, disoriented, clumsy, down-right dangerous I think, especially when alone. I try not to do too much moving around ... so let's just say, a good portion of my weekend was spent on the couch. I can't wait to see what you write in your "Guest Blog" spot. I can't wait to introduce you ..... :) have been digging for pics from days past .... some of them ... that hair ... lol
Be well and I will post more details on the trials involved as the week progresses. Unfortunately, I get really busy, and then extremely tired when I get home from work. I am usually in bed by 9, asleep often times before 10, and up at 4:45 to be to work for 6:30, 7:00 the latest. I don't motor like I used to.
And .... Ms. Hilly survived her night out just fine. I actually expected worse, but didn't do the parental thing by not warning her to not mix beverages, she stated she had a beer, that went to someone else, was drinking vodka and cranberry juice, and someone bought a couple of shots of Petrone..... mmmmmm ......"Tokillya" .... my favorite!! She will be better prepared if there is a next time.... and we all know that there will be a next time.
G'night all
Peace, Love, and Light
et
Hi E - glad you have some news and the initial trip booked! That is exciting!
ReplyDeleteNothing sparked my interest other than the fact that you are family - you don't have your Mom for support anymore - and you need some girl power in your life! But mostly you are family and in times of need we should all pull together to help our own - I would hope you would do the same for me!
Try not to stress, watch your sugars and get as much rest as you can - you'll need it in the coming weeks!
PS - Is Uncle E ok?
B :)
I would ... I just thought it a little strange early on that you took such an interest. Wish my own "family" would throw some enthusiasm and support behind me. The only one who calls me now is Mike, and although I love Mike dearly, he never goes very "deep."
ReplyDeleteDad is fine, other than his off the wall BP. But ... he refuses to listen and thinks that when it gets better, he no longer needs his meds, or to check it on a regular basis. He nearly fell on his face leaving the doctor's office last night, just as I said, "watch your step" he tripped on the parking barrier, he was too freakin' busy trying to get a GD smoke out!!! I don't know how much longer he is going to last at this rate, there is really no telling him anything. Dumb-ass Irishman as my mom used to call him when he was being difficult.....LOL ... THICK!!
I will send you a more private note via your FB account as I don't have an email for you.
Again, I thank you .... from the bottom of my heart for all your humor and enthusiastic support.
Hey Bink,
ReplyDeleteGlad to hear that things are still moving ahead and you have a definate date. Sorry to hear that Dad's blood preasure is off the charts. Hang in there with that.
I am still trying to think about what to write. I plan on just starting and seeing what comes up. Where do you want me to send my "guest" entry?
When you said my interest is double edged, did you mean because of my interest in your new healthy life as well as progress in finding a cure for my baby? Hey, maybe that will be my story line... hmmm, you have me thinking. Me thinking, oh my, that might be dangerous lol.
Love and light to you,
Deb