Monday, May 30, 2011

There's No Place Like Home

I've been home just about a week now and things are going okay. I guess I just expected them to go a little more smoothly if I was feeling so good when I left the hospital. Now that I'm home, I'm still in a lot of pain and my doctors are trying to wean me off the pain medication as much as they can. Unfortunately that means I'm feeling more pain. Especially in my back, my chest from having my chest opened, and my wrist hurts most of all from where they had the A-line. That's so painful that I am actually dictating this blog post on my iPad so I can just copy and paste it to my blog. The wrist pain is also the most frustrating because I expected it to be mostly healed by now. Especially since it's nearly three week post transplant.

Another little annoyance is I've been getting headaches a lot more frequently. The first day home I got a really bad migraine and my doctors adjusted my medication. That seemed to help but now it seems about every day around six or seven I get just a headache. Not bad but it's annoying. As for the back pain, I've been using a heating that and that helps alleviate a lot of the pain.

My nurse says that my staples and incision look really good. The staples are coming out on June 8. All 51 of them! She also said that there's a good chance that some of them may even fall out on their own, which kind of freaks me out a little bit because I'm afraid I'm going to wake up and find staples in my bed. The staples freak me out alone and knowing that they could fall at any moment only adds to the anxiety of having them in.

I'm also starting to get more comfortable with my medications. I'm nervous about having to refill my pill box this week, only because when I did it for the first time last week, I had filled out one day's worth with the doctor down in Philly as a "cheat sheet." Vicky helped me with the rest of the week. Maybe if I'm extra nice she can help me again this week. Also, the few times I've been out and about in town, the support and congratulations I've been getting from people has been really wonderful. I feel so blessed to live in a community that pulls together to help another resident in a time of need.
Well I just wanted to give you a quick update about how the last week has been. I will post again tomorrow because I have an appointment down in Philly as well as an appointment with my general practitioner here in Verona just to check me out. I will let you all know how things go with that and again thank you for all your support and prayers and love you and well wishes. I do not know how I would've gotten through all of this without all of you. I hope you all enjoy the rest of your Memorial Day Weekend and I will talk to you all soon.


Tuesday, May 24, 2011

Leaving the Emerald City!

I got word this morning that I will be getting discharged TODAY! The results of my second biopsy came back great and they're kicking me out. Well not really kicking me out but I'm ready to go home. I miss my bed lol. I would be lying if I didn't feel bittersweet about leaving. I've been here seven weeks and it's going to be an adjustment going home and working towards recovery. Not to mention that the entire staff here has been terrific and feel like family. Plus, I'm a little nervous. I think it's natural to feel nervous. It's going to be a lot more responsibility to take over all the medications on my own. I've been trying to familiarize myself with them and when I take what but there's a lot. The transplant doctors will be in this afternoon to go over the final doses and times with me as well as address the questions I have. They will also be removing the last IV from my neck and the stitches in my stomach from my drainage tubes.

I found out my staples will have to stay in for at least another two weeks. Since it is my second time having my chest opened they like to give it a little more time to heal plus with the immunosuppressants it takes a little longer for my skin to bond back together. The good news is that I can shower normal with the staples and don't really have any special instructions for them except to not submerge them in water (so no baths or pools for the time being). The staples gross me out so knowing that I can just ignore them helps. I will have a home nurse visiting once or twice a week to look at the I also need to find out my biopsy and office visit schedule. I don't think I have a biopsy next week (they give you the third week off for some reason) but I still have to come down for an office visit. There's so many things that I feel like I still need to learn before I go home. I think I'm just over analyzing things a little bit. The thing I'm most nervous about are the medications. I was so regimented with my schedule pre-transplant and now I feel like I don't know what to take when. But the team is really good and I know I will be put at ease once they come in and go over the final doses.

Right now I'm being inundated with people coming in giving me paperwork for this and that.  It's a lot to handle. I will continue to keep you all posted on how the discharge process goes and everything else going on. Thank you all for all your continued support through all of this. I can't wait to begin this next chapter of my life and share it all with you in person and not just through my blog and Facebook page.

Love you all so much!

My City of Oz. I'm going to miss it but I know I will be back and look
forward to spending time here as a tourist and not just a patient.

Wednesday, May 18, 2011

Bumpy Yellow Brick Road

The past week has definitely been full of it's ups and downs. I guess that was all to be expected though. I just don't remember my last surgery being so difficult. Maybe being 7 years younger did made that much of a difference. It just seems like for every good day I have, the next one is much worse. When I first woke up from surgery everyone told me how great I was dong and how impressed they were at my recovery. The first big obstacle was being intibated for such a long period of time. My surgery was done around Noon on Wednesday the 11th and the tube was kept in until 2am Thursday morning. It was such a relief to get it taken out. Apparently getting it put it was rougher than they had thought it would be. I kept coughing up blood while intibated which was less than comfortable. They would suction it out but my mouth was so dry that it would actually hurt. They would swab my mouth to keep it from drying out but since I couldn't really swallow, I would just cough up and choke a little bit. I wouldn't wish that on anyone.

Once the breathing tube was removed I was hoping I would be somewhat in the clear. Boy was I wrong. My throat was still really sore and my voice was super raspy. They said this what normal the first day or so but here I am a week later still unable to talk very well and its beginning to get to me. Luckily 3 out of my 4 drainage tubes have been removed but the last remaining one is still causing a lot of pain, especially in my back. My doctors said that the tube is most likely rubbing up against the inside of my ribcage which is why I'm having so much discomfort. The third tube they took out yesterday seemed to come out smoothly but a later X-ray showed that I had air in my chest where the tube was. This meant more pain. To top it all off,  i got a migraine as well as chest pains and broke out into a sweat and was coughing a lot. It's so painful to talk. My doctors ordered a CT to see what was causing the migraine but I had already been too sedated to get it. I was also too sedated to meet with the ENT (Ears, Nose & Throat) doctor about my voice. Apparently he came in to assess me but I was pretty out of it. I don't even remember him coming in. They moved me back to bed and put me on oxygen in an effort to get the air out of my lungs. Luckily that, along with my breathing exercises has seemed to help. As has the morphine which seems to have become my best friend over the past few days.

My dad and I had a "class" this afternoon with one of the transplant team doctor's about what to expect the next 6 months or so. It looks like a biopsy down in here in Philly once a week for the next month or so with them becoming less frequent as time goes on. These are things that we had expected so they weren't really a big surprise. The good news is that the biopsies will be out patient and be done at The Perelman Center so I won't have to step foot into the actual hospital unless it is medically necessary. They doctors had originally said that I could be discharged as early as this Friday but that was before the air in my chest and they were still planning on removing my final drainage tube today so I'm not sure what the time frame is now. I guess it's better not to rush things and make sure everything is ok before they send me home. Being in here 6 weeks is starting to take it;s toll on me though. I want to be able to sleep in my own bed and walk outside and get some fresh air. My doctor also warned me that I'm not going to get home and feel 100% right away. I will still need time when getting up and my even feel light headed for sometime post transplant. These are all normal things and I should not let them get me discouraged.

He also said the time frame for me to return to work is still about 6 months and I wouldn't be able to be cleared for any major travel for 12 months. I guess part of me was hoping that since I bounce back so quickly from my first open heart surgery that this would be no different. They said I should be able to drive again in about 6 weeks post surgery. They just want to make sure my sternum is fully healed before I get behind the wheel. That was also expected and I already have June 22nd in my calendar. But who's counting?

So right now I am just taking things day by day and just working on getting home so I can continue to recover from there. I know the long ahead of me is still a long one but getting home is a least a baby step in the right direction. Luckily, the staff here has been amazing and I wouldn't trade going to another hospital for anything in the world. I feel like they are part of my family now and definitely plan on coming down to visit even once I am healed.

I also want to to thank al my family and friends (again) for being here for me whenever they can to help support me. I know you all have been calling and I haven't been answering but it's not because I don't want to talk to you, it's that with my voice, I can't. I'm sure many of you have been waiting for the day when I can't talk so take advantage of it while you can! I will try to update my blog more frequently so the posts aren't so long but it's much easier to just shoot a quick message over the Hrt4Bryan Facebook Page. Also, my brother has access to that so he can keep people updated there as well. Thanks for all your continued support and I will let you all know how thing progress over the next few days.


Tuesday, May 10, 2011

Tin Man Gets His Heart!

I just found out that a heart has become available for me! I don't know how long I will be out of commission and unable to update my blog but my brother will be updating the Hrt4Bryan Facebook page so check there for the most up to date information and latest news on my immediate recovery! Thank you everyone for all your love and support through all of this! I look forward to continue sharing my journey down the Yellow Brick Road with you!

Giving Due Recognition and Status 1A-E Update

I just want to say how wonderful the staff here at The Hospital of the University of Pennsylvania are. From the doctors to the nurses to the CNA's, everyone is truly amazing. They always have a smile on their faces and are really great at making me feel at home here and understand how difficult this situation is for me being so far away from my family and friends. I've been in many hospitals and dealt with many different nurses and doctors over the years and the ones here truly take the cake. They have become like family and I know I will be sad to leave them once I get my new heart. You can tell that they really care about their patients and want to do everything they can to help them feel better, even if it means running down to Potbelly's to get me a milkshake or taking me to get my haircut. They even know to come into my room quietly in the morning so as to not wake me up and let me sleep in. I can't say enough how great they all are.

Now onto the serious stuff. Today is the day that my 1A-E time expires. I talked to my nurse practitioner Nicole yesterday and she said all that has to be done to extend my time is a simple conference call. That being said, the conference cll hasn't even been set up yet so I will continue on as Status 1A-E until the conference call and they are told otherwise by UNOS. I also spoke with my doctor this morning and he said I am the perfect candidate to be status 1A-E and he doesn't see my extension being denied. He also said that if it were to be denied, they would "go in with guns blazing" to get me back up to status 1A-E. It helps to know the doctors are really pushing and doing everything they can to get me a heart as soon as possible. So it looks like I will remain at HUP for the time being, although a definite length of time won't be determined until they have that conference call. I will update you all on when the conference call will take place. If not here on my blog, then definitely on the Hrt4Bryan Facebook page.

Also, for those of you dying to know about the iPad. It arrived at the Apple Service Center in California yesterday morning and I got word last night that it is unrepairable. The good news is they will replace it for free and it has already been shipped and is scheduled for delivery TODAY! It's crazy that this all was resolved in about 4 days. That's all the news I have to report for now. I'll let you know if anything else comes up.


Friday, May 6, 2011

Happy Hour Success but then Things Crashed

My Dad happy with to see all the support shown at
the Hrt4Bryan Happy Hour. Photo credit: Jeff Stiefbold

Let me start by thanking everyone who came out and support me last night at the Hrt4Bryan Happy Hour last night. From my High School teachers and fellow VHS Alumni to my neighbors, family, friends and even people that I didn't even know. All of the support and well wishes mean so much to me and words can not begin to describe how grateful I am to live in a community where so many people are willing to rally behind someone in need. I also want to thank Chuck MolinaroPaul McDevittLen Waterman and George Zehnder for helping with organizing the benefit. Without them, there is no way it would have been such a huge success. I also want to than O'Neil's for opening their doors to allow this to happen. All in all, over $12,000 was raised to help pay for my medical and travel expenses. I never, in a million years, expected the event to be so successful. Thinking about it brings me to tears and leaves me speechless. More pictures of the event can be found here.

Last night is when things started to go downhill. I went for my usual walk around the unit like I always do. Down the hall, turn right at the nurses station, down to the service elevator bank and look out the window to see the skyline of the city I've spent the last mont in but have been unable to explore. As I was walking back to my room I could feel my heart race. My chest was getting tight and I was getting short of breath. As I entered my room I heard the alarms sound and looked at the monitor and saw my heart rate was up to 146. Seconds later, the nurses were in my room getting an EKG and taking my vitals. I was sweating and my left arm was weak and I had pain in my chest. They called the resident on call. My heart rate wasn't slowing lowering like it normally does. After about ten minutes (but it felt much longer) my heart rate was still in the 130's. The doctor ordered some meds to help bring my heart rate down and my symptoms slowly began to subside. I rested in bed the rest of the night and then went to bed.

The shattered iPad.
This morning I felt much better and figured today would be a good day. I showered (which has finally become a daily occurrence once again). After I got dressed and was getting ready to eat my lunch, I knocked my iPad off my table. Although the cover was closed when it began to fall, it had opened by time it landed face down on the wheel of my IV pole. I could tell by the shards of broken glass on the floor that the outcome was not going to be good. You can tell by the picture that my intuition was correct. I called Apple and they told me that "accidents" were not covered under my warranty and it would cost over $300 to replace the screen. I explained my situation of being in the Hospital and being unable to get to a retail store and asked what my other options were. She said her manager was out and had me email pictures of the iPad to her and she would speak with him about how to handle my situation. Hopefully they figure something out considering this isn't the type of situation they see everyday. We will see.

Then, as I ate my lunch and housekeeping was cleaning up the broken glass from my iPad, my heart rate dropped into the 30's. I didn't even know anything had happened until I saw the alarm go off and a nurse (followed closely by more nurses) came running in my room to check on me. It only lasted a few seconds and by time I had even looked up at the monitor my heart rate was back into the 50's, which is where it normally is. So after last night's rise and today's fall in my heart rate I have been put on bed rest until the electrophysiologist can come and interrogate my ICD and determine why it let my heart rate drop so suddenly.

So needless to say , the last 24 hours have been quite the emotional roller coaster for me. I will keep you updated as to what the doctors say and if any else changes. My two weeks of 1A-E time expires on Tuesday but but I have a feeling these last two incidents (my heart, not the iPad lol) will allow for me to get an extension. Thank you again to everyone who came out yesterday and hopefully things start to look up from here.


UPDATE: I just got a call back from Apple and they will repair my iPad free of charge given my "unusual circumstance"! I just have drop the broken iPad off at any UPS Store and they will package it, send it to Apple and Apple will repair or replace my iPad at no cost to me!

I Also spoke with my doctors and the electrophysiologist and they said my everything seems to be "normal." Meaning, my elevated heart rate is the reason and I'm here and my pacemaker didn't go off when my heart rate dropped because it has a special feature, or fail-safe, that makes it wait a certain amount of time before shocking my heart back into it's normal rhythm. I have also been taken off bed rest and am now free to roam around again! Things have begun to get better quicker than I had anticipated!