Friday, December 31, 2010

2010… Don’t Let The Door Hit You On The Way Out!

As 2010 comes to end, I can’t say that I’m particularly upset to see this year go. It started off promising enough but as the year continued it seemed to get worse and worse. It started with my car accident in the end of July and then just snowballed from there. Being put on the transplant list, getting hospitalized, losing my Mom, and not being able to drive my new car (my beautiful VW CC Sport that now sits in my driveway and taunts me) are just a few things that happened in the last 4 months of the year, making it the most difficult time of my life. I’m so grateful to have such a great family and group of friends to help me get through it. There is no way I could have gotten through these without you guys.

Although there were a lot of downs, there were some pretty good ups as well. My brother got married in May and I’m so happy to officially have her part of the family. Also, my friends Danielle and Pete got married in June. I was so happy to see them tie the knot! I also had a great trip down to Washington DC in July with the Petrullo’s. We were only there for four days but we saw so much! We even managed to get a tour of The White House which was so cool. I’m such a dork when it comes to that stuff. I also had a ton of great memories with my friends and was pleasantly surprised to have some come back into my life. I've made a little slide show (below) of some pictures of the past 12 months. I did it quickly so the transitions are a little boring but you get the idea... Enjoy!

I’m looking forward to 2011 being a year filled with triumphs. I hope I get my new heart soon. The TV show Grey’s Anatomy called New Years Eve “organ-palooza.” So as awful as it is to think about, there is chance I could get my heart in the near future. If not, I have a check-up down in Philly on January 11. I will let you all know how that goes.

I hope that all of you had a Merry Christmas and have a very Happy and Healthy New Year. Remember, life is short so continue to live each day to it’s fullest. Thanks again for all you guys have and continue to do for me.

Tuesday, December 21, 2010

No New News...

Just finished with my check-up and everything is "good." I think that their definition of good differs from mine. Although I am not as tired as I was before Thanksgiving, I am more tired than I was right after they changed increased my Milrinone. They said that working a full week is probably why I'm increasingly tired by the end of they week and recommend that I decrease my hours to about four days a week. I will talk to Lauren tomorrow but I don't see it as being a problem.

I have another appointment on January 11th and then they say I will go to a true 4 week schedule. They want me to meet with the transplant psychologist so I have some kind of relationship with him. That will make it easier for him to see me in the hospital post transplant.

So that's pretty much all that is new. I've been listed for about four months now so hopefully I will get a heart soon. I wouldn't mind spending Christmas in the hospital if it was because I got a new heart. The doctors said that the average wait would be about six months but I still hope it comes sooner rather than later. As usual, I will keep you all posted if anything changes.

- Posted using BlogPress from my iPad

Tuesday, December 7, 2010

My Heartbeat Beats Me Senselessly...

Oh, where to begin... Nothing major has happened since I went to the doctor last week (aside from today's incident). I've just been feeling a lot of anxiety the past week or so. They gave me some medication to help me sleep at night which has helped for the most part. I've been feeling a lot anxiety during the day now. I think it's the same amount I've always had but I'm just hypersensitive to it now that I have time without it (even if it is while I'm sleeping). It tends to hit me like a brick wall during the day. I spoke with the social worker with my Transplant team on Friday and she assured me that everything I'm feeling in regards to waiting for a heart is perfectly normal. She said losing my Mom in the middle of all this as well as the added stress of the holiday season is probably making things slightly harder for me. She's going to call me tomorrow and we're going to find someone up here that I can talk to about things. As most of you know, I usually answer "How are you feeling?" with "Good" or "Ok" even if I really feel like crawling into a ball and crying. I guess it's just a defense mechanism. There are so many people who seem to care about how I am feeling it tends to get a bit over whelming. It's not that I am ungrateful for all the support everyone has shown. It's just the constant "How are you doing?" remind me of everything I'm going through. And sometimes I just don't want to think about it.

As another reminder of everything I'm going through, this afternoon I was having some palpitations that where quite annoying. It would feel like my heart was fluttering and then the air would be sucked out of my lungs. It's happened once or twice before but today it was a little more regular. I guess an irregular heartbeat is regular for me because I left work a little early and after speaking with the Nurse Practitioner down in Philly I went to my cardiologist up here just to make sure everything was ok. He kept his office open late for me since I would be arriving after his normal office hours. I love rolling into a doctor's office or hospital VIP style. Lol. Anyway, my EKG was fine. My blood pressure was 90 over 60 which would be low on most people but is normal for me. He interrogated my pacemaker and it didn't show any events for today. I did have some activity on December 1st at about 2am but I must have slept through it. He said he would let my electrophysiologist up here as well as the team in Philly know what he found. Or I guess what he didn't find. It's frustrating that I have the "incidents" and they don't show up on anything or never seem to happen when I'm hooked up to a monitor. It makes me feel like the boy who cried wolf. Which adds to the anxiety and brings it all full circle. I was told recently that it's ok for me to show emotion through all this. I don't always have to be a rock. And I'm starting to learn that it's true.

Thursday, December 2, 2010

December checkup

I just got done with my monthly checkup and we're on our way home. Everything went fine. No changes or anything. They put me on a new medication earlier in the week to help with anxiety and to help me sleep at night. It seems to be working already. Hopefully it continues to work. They want to see me again in 3 weeks. My appointment is on December 21st. We hadn't expected to have to come down the week of Christmas but looks like we are. Maybe there will be a Christmas miracle and I will get a new heart before then. I can dream... As usual, I'll keep you all posted if anything changes or something major happens.

- Posted using BlogPress from my iPad

Thursday, November 25, 2010

Giving Thanks

There is so much for me to be thankful for this year. I'm thankful to have such a great support group full of friends and family. This year has certainly had its ups and downs. I'm so thankful that to have all of you to help me celebrate the good times and support me during the difficult. I look forward to having you all with me as I continue my journey. Happy Thanksgiving to you all and enjoy this time with with loved ones.

Monday, November 22, 2010

Back to Reality... Sort of

Sorry I haven't kept you guys up to date the past couple of days. I was released from the Hospital yesterday afternoon and got back home to Verona around 4:30. It felt so good to take a hot shower and eat non Hospital food! I went back to work today (which was apparently a surprise for most people in the office) and I actually don't feel exhausted now that I'm home. We had a Thanksgiving Pot Luck Lunch and I ate so much I thought I was going to be sick. Again, it was good to eat non Hospital food, lol.

My home care nurse, Mark, was supposed to come to change my arm dressing but he is instead coming to my house tomorrow. Apparently I'm getting new pumps for my milrinone and he needs to program them. They should be delivered around Noon and since I can't drive, Lauren told me to just take the whole day off. Then it's back to work on Wednesday and then another 4 day weekend for Thanksgiving! I'll have to remember not to eat quite so much on the real day this way I can actually have room for dessert.

I'll keep you guys posted if anything major happens. And thank you again to all my coworkers for their generous donations for the Tricky Tray. I saw some pictures today and it looked like you all had a great time!

Friday, November 19, 2010

One Day More...

So last night when they took a pressure reading it didn't come back so great. They ended up increasing my IV medication (Milrinone) which means I have to stay another day for monitoring. The good news is that the SWAN in my neck should be coming out later this afternoon and then I'll move up the a regular room. I'm hoping I go up to the 11th floor because all the rooms are private and have just been remodeled. I'm not really in the mood to meet a roommate. I didn't get much sleep last night even though I was given something to help me do so. I'm so bored today. Even with my iPad and laptop to keep me occupied. Kris came to visit this morning which is always nice of him. I'm sure the last place he wants to spend is day off is in a hospital (for those who don't know, Kris is a nurse at Good Shepherd which is a partner of HUP). He said he's going to try to come back this evening. I hope he does. I'm very lonely today and the company helps to take my mind off things.

I was also supposed to visit my friend Ange tomorrow for her birthday but I'm not going to be able to make it now. I know she'll understand (I know she's reading this lol) but I still feel bad because I don't get to see her as often as I would like. But I know we will get together soon.

Well, that's all the news for right now. As always, I'll keep you all posted if anything changes.

Thursday, November 18, 2010

Back at HUP!

So as some of you already know my doctors decided to admit me after my right heart catheterization today. Apparently my numbers (although not much different from the last time I had this done) were still a little low and they wanted to see if they could bring them back up. The good news is that I should only be in here for a day or so which means I will spend the upcoming Thanksgiving Holiday with my great friends and family!

Right now I'm feeling ok. I have the Swan-Ganz in my neck again and am back in the CCU. I like my room this time much better. It has a private bathroom and they are letting me out of bed which helps with my mood. It's bittersweet knowing that I have to go home. Only because while I'm in the hospital with the Swan-Ganz is in my neck, I'm elevated to a 1A status which means a new heart is even closer. Once it comes out and I go home I go back to my previous status of 1B. This was also the first procedure I've had since my Mom died which made it infinitely more difficult. But my Dad was here and of course, Kris stopped by to cheer me up.

In other, amazingly great news, my company held an office wide Tricky Tray for me today (yes, I missed it because I was down here at HUP) and they raised over $4000 towards my medical and travel expenses! Their aren't even words to describe the amount of gratitude I have for everyone in my office. There were over 30 baskets donated and the grand prize was a week rental of a beach house down in the Outer Banks with a wine tasting for 4. I was able to call into the office and caught the tail end of the prizes being awarded. Hearing everyone having so much fun definitely lifted my spirits! And yesterday they surprised me with an iPad so I have something keep me occupied while stuck down here. My boss, Lauren, will be planning another fundraising event soon that everyone (not just my coworkers) can come to and help with. I'll let you know when more information becomes available.

So that's all I really have to say for now. Hopefully I will be out of here by the weekend and back to the office on Monday. I will keep you all posted if anything changes and a huge THANK YOU to everyone for all of their love and support!

Wednesday, November 10, 2010

Introduction and Back Story...

So this is my first post which is why it's a little lengthy. It essentially just tells the story of the major things I've gone through the past 6 years. I promise that my future posts won't be quite so long. I'm sure most of you reading this have heard this story more times than you can count. The picture on the right is from my latest hospitalization in September with a Swan-Ganz in my neck.

While in my freshman year at Monmouth University, I was diagnosed with Hypertrophic Cardiomyopathy. On January 13th, 2004 I had a heart attack and 2 weeks that followed were the hardest 2 weeks of my life. Or so I thought. I was admitted to St. Luke's Hospital in Manhattan because my local hospital "couldn't handle" a condition of my magnitude. While in the hospital, it was discovered that I also had amyocardial bridge. On January 20th, I had open heart surgery to free the artery and they did a single bypass in case there was scar tissue. Later in the week, my doctors implanted a cardioverter defibrillator/pacemaker to treat my ventricular tachycardia. I came home on January 25th and was back at college trying to get my life bak to normal by Valentine's Day. I guess having this done at 18 has it's advantages.

I graduated from Monmouth with a BA in Graphic Design on time in May of 2007. I had a few minor incidents here and there but nothing major. I was one of the lucky ones to find a job right after graduating. I'm a graphic designer for Smiths Detection, a global security company that manufactures X-ray equipment and chemical identifiers for government agencies. I didn't tell them about my pacemaker until after I was hired and realized that there were metal detectors in the office. Pacemakers and metals don't play nice together.

My life was pretty normal for about 3 years after i graduated. This past Spring however, I noticed I was getting more tired. I began to see my doctors and got sent to a Heart Failure specialist over in Manhattan. He informed me that my heart was weakening and that I would most likely need a heart transplant. (I had gone through this same situation a year earlier and had found out that the closest Heart Transplant Center covered by my insurance was The Hospital of the University of Pennsylvania in Philadelphia. My doctors preformed a cardiac ablation and my symptoms had seemed to have gotten better so a transplant was taken off the table) I informed my doctor that I would have to go to HUP for insurance and he new of a doctor there off the top of his head. He gave me her information and I made an appointment. Unfortunately I had to wait 2 months to see her.

On July 28th, my parents and I departed for my appointment with my new heart failure specialist, Dr. Susan Brozena. We arrived at the brand new Perelman Center for Advanced Medicine and where overwhelmed by it's size. It's huge glass atrium and modern art around the lobby felt more like a trendy hotel rather than a hospital. We met with Dr. Brozena and she said that by what she saw in my medical records, I would be a "perfect candidate" for a heart transplant. The only thing that would make it difficult was my blood type, O negative. I was a the universal giver but could only receive an O heart. Since i was still pretty active (for someone in heart failure), she said I would be listed as a status 2. Which pretty much I wouldn't be getting a heart anytime soon. She said I would have to come back for a few days of testing to determine what I would be listed as. After the appointment we got Potbelly's for lunch.

The transplant center called to set up my testing. It was 3 days of testing and my Mom (after much deliberation with my Dad about who would take the time off work) came with me. The testing was Monday through Wednesday so we went down Sunday afternoon since we had to be at the Hospital early on Monday morning. Kris' roommate was able to get us a deal at a hotel close so we didn't spend too much money. The first day was meeting with a financial coordinator and the Nurse Practitioner. She went over what to expect before, during and after transplant. They also drew about 15 vials of blood to test for everything under the sun. After lunch I had a routine echocardiogram and then a pulmonary function test. For those who haven't had this, pretty much they are checking how well you breath. Some of the breathing exercises make you a little light headed. The woman who did my test was nice but a little odd. I later learned that she was originally from New Mexico, which explained a lot. After the day of testing I went to dinner with Kris. My Mom was tired so she didn't come. It was nice to catch up with him. I didn't realize he would play such a big role in helping me get through what I was to endure for the next couple of months. The second day of testing had some X-rays and an abdominal ultrasound. After those were done I had to have a right heart catheterization. Depending on the results, I maybe admitted. My results were borderline but Dr. Brozena felt they were good enough for me not to get admitted. On the third day I only had one test scheduled for the morning, a VO2 stress test. The hooked me up to a heart monitor, had me walk on a treadmill and had me breathe into a machine that checked the oxygen level in my blood while I exercised. After the test my Mom and I headed home but not before stopping at Monmouth University so I could see my former coworkers at the Copy Center. They were very pleasantly surprised to see me. I briefly caught up with them and told them of what was going on with my health and then headed back north.

I returned to work the following day but we had a picnic in the afternoon so it was an easy day. Reading through emails in the morning then relaxing in a park in the afternoon. Not a bad first day back. While at the picnic I received a phone call from Nicole Hornsby, the Nurse Practitioner from the HUP transplant center. She told me that the results from my VO2 stress test were less than stellar. A normal 25 year old should have had a result of 35 or so. Mine was about 7.5 which meant that my body wasn't storing any oxygen for exertion. That explained why I could barely walk 2 blocks without getting short of breath and needing to rest. They wanted me to come back on the following Tuesday to see me. They recommended that my family and I pack a bag because I may be admitted.

So again, my parents and I drove down to Philly in the early morning. After meeting with my doctors we decided that admitting me now would be best. I was going to go on a drug called milrinone. This would help with the oxygen levels in my blood. The doctors gave me a letter saying that I was being listed that day as a status 2 but once I was admitted I would be bumped up to a status 1B and as long as I was on the milrinone I would remain there. Depending on the dosage I may even be bumped up to a level 1A. I was in the hospital for 8 days. My parents stayed for a few days and then headed back home for the Labor Day weekend. My brother visited me on Friday which was also the day I got moved from the CCU to the CICU. Saturday was another great day. Well, as great as a day can be when you're in the Hospital. Cait was in the area and visited me along with our friend Ange and of course, Kris was there. God, I really don't know how I would have gotten through any of this without him there. My Aunt Bonnie and Uncle Don came to visit me on Sunday.

I was released from the Hospital on Wednesday and came home and was on short-term disability for another 3 weeks or so. It wouldn't have been so bad if it wasn't for the fact that I can't drive while on milrinone. It's administered via IV and I have a PICC line in my arm and I must wear a stylish fanny pack that has a pump to constantly administer the drug.

During the next few weeks, my Mom (who was battling breast cancer for the second time) began to get more and more sick. Her sister Judy had come out from Pennsylvania to help care for her. My Mom was in and out of the hospital for most of September. I was finally able to return to work on September 30th. I had set up a schedule where my brother Bob would drive me to work in the morning and my Dad would pick me up at 5pm. That my Mom lost her battle with breast cancer. The next few days seem to be a blur but there is no way I would have gotten through it without the support of my friends and family.

My coworkers are another huge part of my support group through all this. Through various fundraising events they raised money to help me pay for the mounting medical and travel expenses. They have so supportive and even had a "Vacation Donation" so I would not have to take days without pay since I went through all my vacation and personal days.

I've been back to work for about a month now. I am still pretty tired but I try to take things one day at a time as I wait for a new heart. I am currently still listed as a status 1B and I was told that I would have to wait about 6 months for a new heart. I am writing this blog as way to keep all the people who care about me informed as to what's going on. I still go down to Philly for routine check-ups and will be going down for another right heart catheterization next week and will keep post how that goes on here.