Tuesday, April 26, 2011

Every Rule has an Exception...

Since last Wednesday, I have been in the cardiac step-down unit (CICU) here at HUP while the doctors figured out what to do with me. It seems like every day has brought a new plan. One day they were going to try the SWAN again, the next day they weren't going to do anything and I would be home by the end of this week. That all changed Easter night...

Thursday was my first day of physical therapy and it was definitely interesting. She had me go on the bike and see how I did. I made it about 4 minutes before my heart rate shut up to about 140 bpm. The physical therapist had me stop but my heart rate kept rising and stopped at about 155 bpm before it started to come down. I was short of breathe and had tightness in my chest that radiated slightly down my left arm. (For those of you who have been out with me when I've said "I need to stop and rest" this is the same feeling I get.) They brought me back to my room and had me rest the rest of the day. Needless to say it was a less than stellar performance. Friday they had me do physical therapy again but they had me take it easy. Just some leg lifts and step-ups. Since I am in the step down unit I am no longer tethered to the bed so I pretty much have free range of the whole floor. I'm still tethered to an IV pole but its much better than when I was in the CCU.

My Dad had come down on Easter Sunday and brought me fresh laundry, my mail and some lasagna that his friend Sue had made for me. He was here when the doctors came in for rounds and they had said that they would try to get me home by the end of the week, which made him happy. I had been walking the halls a lot and walked him out. And by out, I mean to the elevators lol. Later that night, I was straightening up my room and getting ready for bed. I washed my face, brushed my teeth and was putting away the clean clothes my dad had brought down. I was doing all this while standing. SOmething my body probably wasn't used to/ I reached down and picked up my suitcase and placed it in on my chair to put a few last things in it. The zipper was stuck so I was struggling to open it. Once I opened it, I could feel my heart rate was elevated. I looked at the monitor and saw it was at 135 bpm. I thought I should probably take it easy so I threw my clothes in the suitcase and started to head back to my bed. By this time, I had noticed a yellow light go on above my monitor and my heart rate was in the 140's and a second later it was in the 150's! The yellow light was now red and I could here the alarms going off at the nurses station. The nurse busted through my door to make sure I was ok and got me into bed. The difference between this time and when it happened during PT on Thursday was they were able to get an EKG and see exactly what the problem was. My heart rate came down pretty steadily but the chest pain and shortness of breathe took a little longer.

After that incident and the one on Thursday, my doctors decided to go a different route. They petitioned to the UNOS Regional Review Board for me to be bumped up to status 1A by exception. As I was typing this post, I got a call from my transplant coordinator saying that I was approved for 1A-Exception listing and it will begin today! According to the UNOS website, Status 1A-Exception means the following:

Status 1A-Exception
A candidate who does not meet criteria for Status 1A may nevertheless be classified as Status 1A upon application by his/ or her transplant physician(s) and justification to the applicable Regional Review Board that the candidate is considered, using acceptable medical criteria, to have an urgency and potential for benefit comparable to that of other candidates in this status as defined above. The justification must be for a candidate admitted to his or her listing transplant center hospital and must include a rationale for incorporating the exceptional case as part of the status criteria. The justification must be reviewed and approved by the Regional Review Board. Timing of the review of these cases, whether prospective or retrospective, will be left to the discretion of each Regional Review Board. A report of the decision of the Regional Review Board and the basis for it shall be forwarded for review by the Thoracic Organ Transplantation Committee to determine consistency in application among and within Regions and continued appropriateness of the candidate status criteria. A candidate’s listing under this exceptional provision is valid for 14 days.
Any further extension of the Status 1A listing under this criterion requires prospective review and approval by a majority of the Regional Review Board Members. If Regional Review Board approval is not given, the candidate’s transplant physician may list the candidate as Status 1A, subject to automatic referral to the Thoracic Organ Transplantation Committee.

My "Good Luck Tin Man"
hanging from my IV pole.
It is just a temporary listing that needs to be reviewed again in 2 weeks but hopefully I will get a heart before then. While listed as Status 1A-E I will have to remain in the hospital which means I will be unable to attend the Hrt4Bryan Happy Hour on May 5th but PLEASE don't let that discourage you from attending! My Dad will still be there and I will talk with the organizers and see if there is someway for me to Skype in for it. If not, I will definitely be there in spirit! I don't look at these next 2 weeks as a set back, but as another opportunity to for me to start the next chapter of my life. I was given a "Good Luck Tin Man" while down in the CCU and hope it brings me luck in the next 2 weeks.

Thank you for all your continued support and I will let you know how things go.



  1. YAY FOR EXCEPTIONS! Hoping this is it! XOXO

  2. you should try and sweet talk a nurse into getting you a wheel chair and taking you outside for some fresh air, in between the the scattered thunderstorms of course!

  3. Bryan...I had no idea. See what FB does...
    Anyway...I'm pulling for you. Hope everything goes well.
    Mr. Day

  4. I have a friend who is a 1A exception, he tried his 2nd inotrope just last week and was sent home while I was in the hosp (he has life flight with his insurance so he was able to go home). I never heard of the "exception".

    I went from 1B to 7 to 2, in 22 days while having a blood infection from a closed bile duct. Hopefully I get back on the milrinone next week as my EF is still only 5, I can barely get thru a day.. My prayers are with you and Rick the other 1A exception I now know..