What a roller coaster ride this past 4 yrs and esp. the past 4 months have been. Yesterday after having been in the hospital for nearly a month. I had a follow up visit with cardiology. It was only a week ago since they saw me but the GI team was basically in control of the whole sh*bang and it was necessary to get me out of the threat of further infections & back to where I had been on the transplant list.
So off we went arising at 4:30 for showers and getting there in record time 7:45!! We were first in line & I was first to be admitted, YUP admitted again, but this time it was for the inotrope Milrinone that is sent into my body via the PICC line in my right arm (a new one).
Dr Eisen was able to forego the "seemingly required" right heart cath with consequent admission to CCU, to get the milrinone started, he merely restarted it at the dose I was at post infection.
Color me thrilled. I was able to be discharged the next day. (NEVER has that happened in my 57 yrs.) An admission always led to more & more problems.
I did find out I am anemic and I will follow up on whether it's pernicious or FE deficiency. Also low in protein my albumin level was still a tad on the low side, hence that AWFUL picture that is posted on my FB page by a well meaning friend. It's a constant reminder of how sick I am and how my facial sunken features are so visible, it ages me and makes me cry everytime I see it. My sister cried for days after seeing it, I shielded her from the vision that has become me. (not always but esp. after 1 month in the hospital, no shower, and low iron & sick as a beast with infection..
Anyway back to reality, although my pump awoke me every hour on the hour beeping due to some malfunction, I just kept resetting it as it is a temporary one & the VN will arrive today to reset the 2 "real" pumps, the cartridges full of medicine arrived at about 6 PM lastnight, that company in it's infancy deserves to be praised to whomever will listen as it is THE most impressive group of nurses, doctors, pharmacists & drivers that any IV med company can offer. I hope they grow as they plan to & with my help I will make sure praise is distributed to all that matter.
Off topic a bit but never the less still relevant to my care.
I would also like to announce that my a heart became available that same day for a 26 yr old 1A pt. Not Rick but Bryan. I called Rick and told him, as Bryan was knocking at the LVAD door like Rick is, but God saw it another way & he bless young Bryan with a heart.
Hope is alive... Thank you for your prayers & positive energy.
Blessings to all, Denise
PS, now I need to stay free from infection & maybe I can have someone report to you that I am in getting a heart in the near future.. one can only dream..
So off we went arising at 4:30 for showers and getting there in record time 7:45!! We were first in line & I was first to be admitted, YUP admitted again, but this time it was for the inotrope Milrinone that is sent into my body via the PICC line in my right arm (a new one).
Dr Eisen was able to forego the "seemingly required" right heart cath with consequent admission to CCU, to get the milrinone started, he merely restarted it at the dose I was at post infection.
Color me thrilled. I was able to be discharged the next day. (NEVER has that happened in my 57 yrs.) An admission always led to more & more problems.
I did find out I am anemic and I will follow up on whether it's pernicious or FE deficiency. Also low in protein my albumin level was still a tad on the low side, hence that AWFUL picture that is posted on my FB page by a well meaning friend. It's a constant reminder of how sick I am and how my facial sunken features are so visible, it ages me and makes me cry everytime I see it. My sister cried for days after seeing it, I shielded her from the vision that has become me. (not always but esp. after 1 month in the hospital, no shower, and low iron & sick as a beast with infection..
Anyway back to reality, although my pump awoke me every hour on the hour beeping due to some malfunction, I just kept resetting it as it is a temporary one & the VN will arrive today to reset the 2 "real" pumps, the cartridges full of medicine arrived at about 6 PM lastnight, that company in it's infancy deserves to be praised to whomever will listen as it is THE most impressive group of nurses, doctors, pharmacists & drivers that any IV med company can offer. I hope they grow as they plan to & with my help I will make sure praise is distributed to all that matter.
Off topic a bit but never the less still relevant to my care.
I would also like to announce that my a heart became available that same day for a 26 yr old 1A pt. Not Rick but Bryan. I called Rick and told him, as Bryan was knocking at the LVAD door like Rick is, but God saw it another way & he bless young Bryan with a heart.
Hope is alive... Thank you for your prayers & positive energy.
Blessings to all, Denise
PS, now I need to stay free from infection & maybe I can have someone report to you that I am in getting a heart in the near future.. one can only dream..
It is amazing to see people that have been waiting to recieve their hearts. I hope that you get feeling much better.
ReplyDeleteYou will be in my prayers.