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.


Wednesday, April 20, 2011

A Week of Ups & Downs. Status Included...

Sorry I haven't been keeping you all up to date on the blog. My doctors have been going back and forth as to where to go from here since it's been about two weeks and it looks as though I will not be getting a heart within in this time. My Swan has been taken out and I've been taken off the dopamine which means I have been downgraded to 1B Status. I am waiting to be moved to the step down unit now. Once there, there are going to see how I do moving around and walking as opposed me just going from my bed to the chair. How I feel after a few days of moving around determines where I go from there.

The options that have been thrown around (and highly debated among my team of doctors) are to send me back home on the milrinone IV medication which pretty much puts me back at square one, except I have some hospital time as status 1A under my belt, which puts me up higher on the 1B list (but from what I've been told, I was at the top of that list before being hospitalized so it really makes no difference). The other option is that they put the SWAN back in my neck, put me back on the dopamine and give me some more 1A time and hope that a heart becomes available but from what I've been told, they haven't done one heart transplant the entire month of April so who knows how that would work out (not to mention there are O blood types ahead of me on the list). The third, and my personal least favorite option is they would put a VAD (Ventricular Assist Device) in me to assist my heart until I am able to get transplanted. Depending on the type of VAD they put in, I may have to stay in the hospital or will be able to return home. They did an echo cardiogram yesterday to determine if I would even be a candidate for the VAD. Since I have HCM, they were worried that my heart may not be able so handle a VAD but that doesn't seem to be the case.

So that the news from the past couple of days and I will keep you all posted as to how things are going once I make it up to the step down unit. Thank you all for your continued support through all of this.


Thursday, April 14, 2011

One Week In

Today marks me being here for one week and still no heart. Yesterday was probably the worst day since I've been here. During the night Tuesday, the nurses were having trouble getting a reading from the SWAN in my neck so it was decided to switch it to the other side of my neck a day early. They told me this yesterday morning as I was about to eat my breakfast, which was quickly removed and I was told I wasn't allowed to eat anything because of the procedure. I already knew it was going to a long day. My Dad was on his way down so I would just have him pick me up some Potbelly's so I would have it when I got out of my procedure. They also changed the settings on my pacemaker so it keeps my heart rate above 50 bpm. I guess Tuesday night it got as low as 27 bpm and they wanted to fix that. It's previous setting was 30 bpm. My resting heart rate has been about 45 bpm so as soon as they made the change I could feel the pacing. It was annoying at first but now my resting heart rate is about 55 bpm but while trying to sleep last night it kept dropping and the pacing was a bit irritating. My Dad got here around Noon and brought me my mail and snacks and things. His friend Sue also made some brownies for me.

I went into my procedure around 3 o'clock and was back in my room by 4. This was my 6th right heart catheterization but the first time they put it in the left side of my neck instead of the right. I was in a lot of pain afterwards, especially when I swallowed so the Potbelly's was put on hold for a few hours. They gave me some pain meds but they didn't seem to help much. The nurse's here are great and they could tell I wasn't feeling well so they were really trying to make me feel better. I finally go washed up and then got out of bed and had my Potbelly's sandwich (which was delicious!) and that definitely helped my mood. I was really tired so I pretty much just wanted to get back in bed and go to sleep but I knew that if I went to bed this early I would wake up super early so I fought it and stayed up until 10:30. By that time I had had more pain meds plus my usual sleeping pills so I was pretty much asleep before my head hit the pillow but I got a new nurse at 11pm so she ad to her beginning of shift check-up and woke me up. She was just doing her job so I can't be mad at her. It is what it is. 

Me sleeping with my eye mask to block out the light.
Since I'm in the CCU, the wall to the hallway is
all windows and although there's a curtain, a lot of
light still comes in. Thanks Marie Petrullo for the mask!
My neck is feeling a little better today but I'm still on pain meds because it still hurts when I swallow but not as bad as it did yesterday. I'm still tired but I'm pretty sure its just the meds.

This week has been full of my friends from college visiting. Tuesday evening my friends Mary and Krista payed me a visit and it was so good to see them. I don't think I've seen them since college and it was so good to catch up. There was definitely a lot of laughing and reminiscing about our days at Monmouth. Tonight, my friend Katie is coming to visit so I'm sure there will be a lot of the same. As for this weekend, I'm not sure who (if anybody) is coming to visit.

Just wanted to keep you guys up to date as to what's been going on the past few days and how I'm doing. I have a salad from Potbelly's for lunch and then my nurse practitioner is bringing me some home cooking for dinner. It's so nice to have the doctors, nurses and hospital employees here as part of my support group. It makes it a lot easier being so far away from my family and friends.


Monday, April 11, 2011

An Uneventful Weekend

That's the best way to describe it. Well, medically anyway. Which according to my doctors, is a good weekend. I, however, find it very boring. Thankfully it was a weekend full of visitors!

Saturday I got a surprise visit from m Aunt Judy and Uncle Bob, my cousins Lori, Jen, and Jen's daughter Alesha. It was good to such a pleasant surprise and it's always good to see them. They live by Scranton and I don't see them nearly enough as I would like. I also got visited by Cait and Chris and they brought me goodies! Cait had told me she was coming and asked if there was anything I needed so I asked her to pick me up some saline solution for my contacts and some Purell hand sanitizer (and "any snacks that she may want that I may also enjoy". She brought Pretzel M&M's, Doritos, Potato Chips and Starburst Jelly Beans (which are my favorite jelly beans!). The snack have become very useful since the food here hasn't been the greatest.

My brother visited Sunday with his friend Casey who was all hopped up on Red Bull which is always a good time cause she's off the wall lol. I also had some "Virtual Visitors." Vicky and I video chatted on iChat and I did the same with Nicole and her Family during Sunday Dinner. It was like I was really there. Only they were eating delicious food and had just pushed around some salisbury steak around my place. Needless to say, those Doritos came in handy last night lol.

The Doctors came in this morning and said all my numbers look good and to just hang tight and wait for a heart to come available. They also said the SWAN looks good and they will keep it in until Thursday and then put a new one in for another week. I'm not quite sure what the plan is after that second week but hopefully I won't have to wait that long to find out. I'll keep you all up to date if anything else exciting happens. Remember, for the most up to date information on all the "action" here, follow me on Facebook on the Hrt4Bryan page.


Friday, April 8, 2011

Hrt4Bryan Happy Hour & Other News

First let me start by saying that everything went well yesterday with the right heart cath and I have the SWAN in my neck again. My doctors have been playing with my medications and put me on a new one called Dopamine which bumped me up to a status 1A (Yay!). The SWAN can be kept in for one week and then they have to switch it to the other side of my neck where it can stay for another week. After that, I will have used up my 14 continuous days at 1A status that the SWAN provides and would then be given a "24 hour break" after which, the SWAN would be put back in. It's a little confusing but they seem optimistic that a new heart will become available before that but we will see. Be sure to "Like" the Hrt4Bryan Facebook page for all the latest and most up to date info as to what's going on during my stay here at HUP.

Now on to the fun stuff! A good family friend of ours, Chuck Molinaro, has planned a benefit in order to raise money for the travel and medical expenses that come with the transplant. The details are as followed:

Thursday, May 5th
3pm - 7pm

O’Neil’s Restaurant & Pub
706 Bloomfield Avenue
Verona, NJ 07044

$30 per person
Includes Beer, Wine, Soda & Appetizers

Tickets can be purchased in advance or at the door. To purchase in advance please contact Chuck Molinaro (973-202-4842), Paul McDevitt (201-247-1707), Len Waterman or George Zehnder. If you cannot attend but would still like to donate, e-mail hrt4bryan@gmail.com for information on how to contribute.

I have 2 direct donation blood tags available to anyone who is O Negative and would like to do a direct blood donation for me. Just shoot me an email and I will get the tags to you ASAP! I was also featured on The Gift of Life Donor Programs blog as part of the series "We We Dash" to promote the upcoming Donor Dash and just in case they haven't done enough already, Smiths Detection is having a Pampered Chef Party in which you can order online  from now through June 6th. A percentage of the proceeds will benefit my travel and medical expenses. If you have any questions about how to participate, you can e-mail Ellyn Minor at Smiths Detection.

Thank you again to everyone for all of your love and support.

Wednesday, April 6, 2011

Check Up then Checking In

I had my 7 month check up this morning and I told my doctors of my increased fatigue, shortness of breath and just over all feeling like poop. They're recommendation was for me to have another right heart catheterization which is the same procedure I had a month ago. The only difference is this time they plan on leaving the SWAN in my neck and admitting me in order to up my status to 1A and get me a heart sooner rather than later. They had originally wanted me to have the procedure today but my Dad and I need to return home to get things in order there before I am admitted. My procedure is scheduled for tomorrow and then I will be admitted immediately afterwards.

This is happening very fast and I'm still trying to process it all. I know I have more time to get things in order than I would have had if the call came in the middle of the night but I am still slightly overwhelmed lol. I had expected another check-up that involved them telling me to hang in there and to just wait for my time time to come. Boy was I wrong!

Also, my Dad and I stopped at Monmouth University to pick up flyers (Thank you Copy Center for your fast turnaround!) for an upcoming benefit that some of my Dad's friends are holding for me. The "Hrt4Bryan Happy Hour" will be held on May 5th from 3pm-7pm at O'Neil's in Verona. I will post more details about this later in the week once I am settled in down at HUP.

I will let you know how things go tomorrow either here on my blog or on my Facebook page, Hrt4Bryan.

Thank you all for your support through all of this and it is good to finally start to see a light at the end of the tunnel!