Joy
06-19-2008, 08:39 PM
Hi everyone, and thank you to you, run to live, for inquiring about the infusion. So, yes everything worked out and I made the trial. I was the 100th patient in this particular study of dm-1 and it is now closed. I feel like I am in a movie where I am running after a train and they keep the door open for me and I hop on out of breath.
I went to Denver accompanied by my amazing boyfriend. He happily sacrificed his work day to drive us and hang out all day. And it was all day as many of you know, with the first infusion. I had to see the doc again, have 10 vials of blood drawn and peripherally as some are required as such and my port decided to be cloggy-of course (that did resolve).
Then the drug itself was delayed at the airport due to some mechanical problems with Fed Ex. The coordinator was wonderful and continued to give us updates on the whereabouts of the drug. We did manage to get out for a walk while we waited. Once the infusion stared I was monitored with vitals every 15 minutes and then there is a 90 minute observation period in which the same monitoring continues. My man brought me lunch and we managed to laugh a lot about everything. Then we had to wait 4 hours and come back for a CBC. We went to the Botanic Gardens and had another lovely walk followed by another walk near the center. All of which was great as it was a super summer day and when I was in the infusion room I wanted to chew my paw off. But, we made new friends with patients and staff (so weird to be in another treatment center). Everyone was great.
When we left it was heavy traffic time so we decided to kick around Cherry Creek (a swanky part of Denver nearby) and we had yummy sushi and then cruised home to his place to relax. We were both tired from the day and a lot of activities in the preceding days.
I felt find during the infusion and continue to feel fine. Had a headache late last night and some of today. I was tired and slept a fair amount today, but I actually think that had as much to do with too little sleep before yesterday as well as the drug.
Luca told me he was so glad to be there and after he said he was so pleased that he went and that he admires me for the way I handled it with dignity and grace and humor and that he loves me even more than before. I got a lot of hugs. Now, I happen to know that all of us handle this nonsense the same way, but to hear that from someone directly and someone you cherish with all of your heart and soul is beyond words.
I feel so blessed to have this opportunity, to feel so good still and to have him. Now, it better WORK!
Love to all of you and any good thoughts on this thing working are very appreciated. You all always have my good wishes and prayers and I continue to thank God for this site and all of you!!!
I went to Denver accompanied by my amazing boyfriend. He happily sacrificed his work day to drive us and hang out all day. And it was all day as many of you know, with the first infusion. I had to see the doc again, have 10 vials of blood drawn and peripherally as some are required as such and my port decided to be cloggy-of course (that did resolve).
Then the drug itself was delayed at the airport due to some mechanical problems with Fed Ex. The coordinator was wonderful and continued to give us updates on the whereabouts of the drug. We did manage to get out for a walk while we waited. Once the infusion stared I was monitored with vitals every 15 minutes and then there is a 90 minute observation period in which the same monitoring continues. My man brought me lunch and we managed to laugh a lot about everything. Then we had to wait 4 hours and come back for a CBC. We went to the Botanic Gardens and had another lovely walk followed by another walk near the center. All of which was great as it was a super summer day and when I was in the infusion room I wanted to chew my paw off. But, we made new friends with patients and staff (so weird to be in another treatment center). Everyone was great.
When we left it was heavy traffic time so we decided to kick around Cherry Creek (a swanky part of Denver nearby) and we had yummy sushi and then cruised home to his place to relax. We were both tired from the day and a lot of activities in the preceding days.
I felt find during the infusion and continue to feel fine. Had a headache late last night and some of today. I was tired and slept a fair amount today, but I actually think that had as much to do with too little sleep before yesterday as well as the drug.
Luca told me he was so glad to be there and after he said he was so pleased that he went and that he admires me for the way I handled it with dignity and grace and humor and that he loves me even more than before. I got a lot of hugs. Now, I happen to know that all of us handle this nonsense the same way, but to hear that from someone directly and someone you cherish with all of your heart and soul is beyond words.
I feel so blessed to have this opportunity, to feel so good still and to have him. Now, it better WORK!
Love to all of you and any good thoughts on this thing working are very appreciated. You all always have my good wishes and prayers and I continue to thank God for this site and all of you!!!