Tuesday, September 27, 2011

September Biopsy Results

Sorry it took me so long to post the results from my biopsy two weeks ago but things have been a little crazy since I got back from Philly. So here we go, quick and to the point.

The dermatologist took one look at my back and chest and asked if I was on steroids. I said yes and he said that was the cause. He gave me a wash to use twice a day in the shower and then an ointment to put on the affected area after (I might have posted about this already but I'm not sure). He said as I get weened off the prednisone it should get better.

My biopsy results came in and as usual, no rejection! They increased my pm dose of tachrolimus and starting tomorrow (the 28th) my prednisone will be down to 7.5mg! Also, my doctors filled out paperwork for me to return to work. I'm hoping they put a date down but since they faxed the paperwork to the office and mailed the original back to me I haven't seen it yet.

My next biopsy is scheduled for October 12th. So I'm officially on a four week schedule!

I'm still here in Grand Rapids at my Aunt Karen's house and I've been taking in ArtPrize as much as I can. I'll talk more about my trip in my next post once I get back home and settled.

Thanks again to everyone for your continued support and I will keep you posted if anything changes.


- Posted using BlogPress from my iPad

Monday, September 12, 2011

"Wake Me Up When September Ends"

I feel as if those lyrics from the Green Day song of the same title perfectly describe how I feel about this month. I've mentioned before how the past twelve months have Ben the most difficult of my life and out of all of them, September was probably the worst. I apologize in advance for this post being so long but there's just a lot going through my head that I need to get out. There's an update on my recovery and this weeks upcoming appointments at the end.

A picture I took of myself while I was admitted in
the hospital in Philly last September.
I started last September in the hospital for my first of many admissions at HUP. I missed so much in that week I was in the hospital as well. I spent my first holiday, Labor Day, in the hospital. I missed the birth of my family friend's twin boys, Peter and Andrew. I also missed my best friend Vicky's birthday. That week was also when they placed my PICC line which confirmed my status as a 1B and also my inability to drive until I received my new heart. I was not happy considering my car was barely two weeks old. Not to mention that my job had moved to a new office in Morristown which more than doubled my commute. The plan was already worked out though. My Mom would take me to work since she didn't have to be in her office until 9am and my dad would pick me up at 5 since he got out of work at 3:30. Little did I know that I was sitting in Philly, my Mom's condition was worsening at home. It was only a week earlier she and I we in the same city for my pre transplant evaluation. Sure she had to stop the one day we walked to the hospital but so did I so what the hell did I know?

To be honest, I didn't think this month would bring back so many memories last year. Last September was when the cracks that were to tear my life as I knew it apart really began spread. As I look back, the only light in that dark month turned out to be nothing but a huge waste of time and a burden that would, despite my best efforts over the next year, be too much for someone else to handle.

As I sit at home on disability this September just as I was doing last year, I can't help but laugh at how there are so many parallels as well as so many differences. Last year, I was unable to drive and all I wanted to was to go to the hospital to spend time with my Mom. This year, I am able to drive and feel as if I have now where to go. I would give anything to drive anywhere to spend time with my Mom again.

As I continued to recover and get ready to return to work at the end of the month, my Mom was going in the opposite direction. Looking back, I feel like she was sending all her strength to me knowing that I would need it more in the upcoming months than she would. I've never felt so helpless. I was sitting at home not able to drive while my Mom was sitting in a hospital bed. My Dad did his best to take me to the hospital when he got out of work and so did my Aunts. My aunt Judy had dropped everything at home to come to Jersey to take care of her baby sister and many times my Aunt Bonnie drove me home (in the opposite direction) from the hospital if my Dad just dropped me off. And then there was Kris who would drive up from Philly to see me as well as take me to spend time with my Mom.

There a few days in September that I will remember like they were yesterday. I always thought the only day would be September 11th, but little did I know that I would feel the same pain that so many families felt on that day. The week before I was to return to work, I was told by my Aunts that my Mom would be going home by the end of the week with a "home nurse" service to visit and help my Aunt Judy take care of my Mom at home. The following day, Kris and I went to the hospital. Both of my Aunts were there and the tiny room became more crowded when two more women walked in the room. They introduced themselves as being from the home Hospice service. I lost my breath. This was the first time I had heard that my Mom would be going home in the care of Hospice. It took every once of my being not to break down right then and there. I kept my head down and all the talking in the room sounded like that of the teacher talking to Charlie Brown. I finally looked up to see my Mom looking directly at me with tears in her eyes. I knew she was upset that this was the way I had to find out about her going on Hospice. She had known. My Aunts had known. And I knew that she had told my Aunts not to tell me. I had to leave the room. I walked down the hall. I had no particular destination in mind, I just needed to get out of there. I could here Kris following me down the hall saying something about me walking fast (something that I didn't do too often since I was in heart failure). I found the pantry and got a bottle of water. I didn't want to hear whatever lies and BS he wanted to feed me. The truth was the my Mom was going home to die.

Later that afternoon my coworkers came to visit me. I hadn't seen them in three weeks and they had a surprise for me. They presented me with all the donations that my coworkers had given towards my medical and travel expenses to and from Philly. I was so overwhelmed by the support of my coworkers from around the world, most of which I had never met or even talked to.

My Mom came home the following day and the weekend was filled with family and friends going to visit with her. Her apartment seemed to always be full of people. I went on Tuesday to see her. I had to go to Philly for a check-up on Wednesday and I was returning to work (with my Brother now driving me to work) on Thursday.

I went back to work on Thursday, September 30th. It so good to everyone in the office. I spent most of the morning going through my emails and visiting everyone in the office. It wasn't too rough of a day but by time I got home I was exhausted and decided to take a nap instead of visiting my Mom. My Dad and I had just finished dinner when his cell phone rang. It was my Aunt Judy. Since he was doing dishes he told me to answer the call. As soon as I picked up I could tell by my Aunt's voice that something was wrong. She was thrown off by me answering my Dad's phone and asked to talk to my Dad. I heard him say we would be there in twenty minutes. He hung up the phone and said my Mom was being taken to the hospital and we would meet them there. My brother was also on his way to the hospital as well. I knew it was serious. Vicky and her boyfriend Chris were supposed to come over and visit when they got to of work. I called her and told her of the change in plans and she said she would meet me at the hospital. We got to the hospital after what felt like the longest drive of my life. The security guard sent us into the ER and told us to speak with a nurse at the nurse's station and they would tell me where to go. The nurse told us to follow a security guard to a room down the hall to meet with my family and the doctor would be in shortly. We found my family and a few minutes later the doctor came in to tell us the news were were dreading. My mom was "dead." That was the word that the doctor used. It felt so impersonal to say that way. Like she was a cell phone battery. I was in shock. In one month, my life went from cracking to being completely shattered.

The next week felt like a blur. I remember everything but I don't need to go into the details. It was probably the darkest days of my life. It was even worse than waiting for my new heart in the hospital. That's pretty much all I want to go into right now. Well, it's pretty much all i can go into with getting too choked up. Sorry for venting but it's just things running through my head which is leading to me not sleeping very well. 
(More after the video)

Medical Update
I still have the rash on my back and chest. I will be going to see a dermatologist tomorrow afternoon. The culture came back and said that it was caused by a type of bacteria that can't be cured by most antibiotics so the dermatologist should be able to clear up the problem. Then wednesday I will be going to Philly for another biopsy on Thursday. It's been three weeks since my last one and it felt weird not going down last week. After this one, my appointments will officially be every four weeks. I'm excited that my prednisone continues to get lowered. I'm currently at 10mg and two weeks before my next biopsy it should get lowered to 7.5mg. I am still doing well with cardiac rehab. I have to check how many sessions I have left but I should be done sometime in November which is perfect since that is also when I should be going back to work. I won't be able to go back until I've completed rehab. I will get the total number of sessions i have to go when I go on Friday.

Next week, my Dad and I are driving out to Michigan to see my Aunt, Uncle and cousins who live out there. It's going to be nice to get away from everything for a little bit. I also think we're going to a football game at the University of Illinois where my cousin is currently getting his masters degree (he got his bachelors degree there as well). We'll be back at the end of the month.

I will let you all know how everything goes with my appointments at the end of this week. Thanks for all of your support and to everyone who has been there for me the past year. I'm so blessed to have you in my life. It's really taught me who I can rely on in a time of need. Thanks again.