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.
Dermatologist
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.
Biopsy
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.
-Bryan
- Posted using BlogPress from my iPad
Bryan's Journey with a New Heart!
Tuesday, September 27, 2011
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.
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.
-Bryan
 |
| A picture I took of myself while I was admitted in the hospital in Philly last September. |
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.
-Bryan
Tuesday, August 30, 2011
Fishing, Biopsy & Mean Irene
Sorry it's been so long since my last post. I've been quite busy with cardiac rehab and such. Let me start by letting you know how my appointment went with my GP about the rash on my back and chest. He did some research and found that it's not uncommon for someone after heart transplant to get a fungal form of folliculitis. He took two cultures (on to check if it's bacterial and one to test if it's fungal) and prescribed an anti fungal cream to use at night before I go to bed and said to put Selsun Blue on 5-10 mins before I shower in the morning. I'm glad to report that it seems to be working! Now if I can only get rid of this damn acne caused by the prednisone! I've switched face washes and that seems to be helping but it's still something I'm self-conscious about. Also, I still have the hand tremors when I do simple things like write, try to eat and sometimes even drinking causes them. I continue to tell my doctors about it but they don't seem concerned with it. Hopefully as my medications come down they will get better.
Now onto some fun stuff. A couple weeks ago my Dad's friend took us fishing for fluke out in the ocean. We used to go every summer when I was a kid and I had forgotten how much fun it was! I turned my cell phone off and left my iPad at home. It was so nice to be disconnected from everything for the day. We caught a total of forty-seven fluke but only five were big enough to keep but we were busy having fun reeling in the fish so the day seemed to fly by! I hadn't seen my Dad's friends in years and it was great to see them and catch up. Hopefully we'll get to do it again next summer.
As for my Biopsy last week, it went flawlessly! I began hydrating myself a few days before to make sure I didn't have the same problem as last time. As per usual, the biopsy came back with no signs of rejection! They also lowered my tachrolimus, took me off one of my sleeping pills and I will lower my prednisone to 10mg on September 1, which is two weeks before my next biopsy. That's right, I no longer have to go to Philly every two weeks, it's now every four weeks! But since there is a transplant conference on what would be my fourth week, I will be going a week early. So I went from every to weeks, to tree weeks and then I will be every four weeks. I'm very excited about that.
I briefly mentioned cardiac rehab before so let me go a little more into that. It's going really well and most of the time they need to tell me to slow it down because my heart rate is a little too high, but in a good way, not a bad way like it was pre-transplant. Going three times a week is a lot of work but I'm up for the challenge! I've also been wanting to start hiking just to keep busy on days I don't have rehab or on weekends. I also want to start getting into photography a little more so I'm trying to find a camera that would work better than the point and shoot I have now.
Last week I had lunch with my coworkers at Smiths Detection. It was so good to see them and walk around the office and say hello to everyone and let everyone know that I'm doing well in person. I'm looking forward to return to work in November, even though an exact date has not been set.
And on top of everything else, I survive Mean Irene this past weekend! It wasn't bad by me, thank God. We had a bunch of branches down in the yard and the brook behind my house got pretty high, but nowhere near as high as it was during Floyd a few years ago. Other than that we we good. We didn't lose power, no water in the basement and by time I woke up on Sunday everything had past. I know I am fortunate because a lot of towns and even people a few blocks away were not as lucky as I was.
That's pretty much all that's been going on with my recovery. I will let you know if anything changes and what the results of cultures are once they come back into my doctor's office.
As always, thank you all for your support through all of this.
- Bryan
Now onto some fun stuff. A couple weeks ago my Dad's friend took us fishing for fluke out in the ocean. We used to go every summer when I was a kid and I had forgotten how much fun it was! I turned my cell phone off and left my iPad at home. It was so nice to be disconnected from everything for the day. We caught a total of forty-seven fluke but only five were big enough to keep but we were busy having fun reeling in the fish so the day seemed to fly by! I hadn't seen my Dad's friends in years and it was great to see them and catch up. Hopefully we'll get to do it again next summer.
As for my Biopsy last week, it went flawlessly! I began hydrating myself a few days before to make sure I didn't have the same problem as last time. As per usual, the biopsy came back with no signs of rejection! They also lowered my tachrolimus, took me off one of my sleeping pills and I will lower my prednisone to 10mg on September 1, which is two weeks before my next biopsy. That's right, I no longer have to go to Philly every two weeks, it's now every four weeks! But since there is a transplant conference on what would be my fourth week, I will be going a week early. So I went from every to weeks, to tree weeks and then I will be every four weeks. I'm very excited about that.
I briefly mentioned cardiac rehab before so let me go a little more into that. It's going really well and most of the time they need to tell me to slow it down because my heart rate is a little too high, but in a good way, not a bad way like it was pre-transplant. Going three times a week is a lot of work but I'm up for the challenge! I've also been wanting to start hiking just to keep busy on days I don't have rehab or on weekends. I also want to start getting into photography a little more so I'm trying to find a camera that would work better than the point and shoot I have now.
Last week I had lunch with my coworkers at Smiths Detection. It was so good to see them and walk around the office and say hello to everyone and let everyone know that I'm doing well in person. I'm looking forward to return to work in November, even though an exact date has not been set.
That's pretty much all that's been going on with my recovery. I will let you know if anything changes and what the results of cultures are once they come back into my doctor's office.
As always, thank you all for your support through all of this.
- Bryan
Thursday, August 11, 2011
Aborted Biopsy, An Echocardiogram But All Is Still Good
So this weeks biopsy was somewhat of a disaster. I got to The Perelman Center bright and early. In fact, I was the first person there. I was excited because that meant I would have gotten out relatively quickly. I went in for my biopsy around 8:30 due a "scheduling problem" with the biopsy suite. Already behind schedule. As they used the ultrasound machine, they told me I was dehydrated and my access vein was a little small. They attempted to go in but had some difficulty. The doctor told me vein was as thick as a penny when it should be that of a quarter. He said he would make one more attempt and then I would have to settle for an echocardiogram. As he said that, the lidocaine, that he used to numb the area of my neck he would be going in, caused the vein to completely collapse. That meant a second attempt was Impossible. I became really upset because I was afraid my prednisone wouldn't have been decreased since they couldn't get a proper biopsy to check for rejection. I went back up to the clinic, got my blood drawn and waited to see the NP for my check-up while they scheduled my echocardiogram. I saw the NP and she said according to what she saw, everything looked good. I mentioned my side effects from the prednisone (the Acne on my face and the rash on my chest and back) and she took a closer look. After months of me complaining about the rash and saying the topical cream they prescribed wasn't working, she thought it was not a rash caused by the prednisone after all and that is should see my GP back home and if he can't help then I should see a dermatologist. She suggested one in dermatology at HUP but I said that, although it is easier for them to have me stay within the Penn Medicine Health System, I can't continue to drive down to Philly for doctors that I can see back home. The neurologist was one thing (I'll get into how that appointment last week went in a minute) but a dermatologist, who would want to see me again in the next week or so would be impossible. I have an appointment with my GP on Friday and will hopefully get an appointment with a dermatologist next week if necessary.
The NP called me yesterday afternoon with my results and said my echo looked good and blood work came back good as well. They lowered my tachrolimus AND my prednisone down to 12.5mg daily. That means that after my next biopsy on the 23rd, they should lower it to 10mg which means my biopsies will be every 4 weeks instead of every 2 weeks. Yay!
As for my neurologist appointment last week everything went well. The doctor said that my "headaches" are actually less severe migraines and prescribed a daily medication to help prevent them and if I do get one, take an Excedrin to get rid of it. He also prescribed a more heavy duty medication for when I begin to see symptoms of a more severe migraine. That medication should "abort" the migraine before it gets too bad. I don't have to see him again for 6 months so I have an appointment for late January.
I also began cardiac rehab last week and I didn't realize just how important it is. I thought I was doing good but when I think about it, I was just taking short, slow walks around my neighborhood. Now at rehab, things are getting amped up and they are really kicking my but. I do mostly cardio equipment to strengthen my heart and eventually will move on to bigger and better things to build some more muscle mass and then hopefully people will stop telling me how I need to gain weight.
Other than that, I have nothing really else to report. I will let you know how things go with my GP on Friday. Oh, and today marks 3 months since my transplant! Everyday I feel better bunt cardiac rehab showed me that I still have a long way to go. Thanks again to all of you for your continued support.
-Bryan
The NP called me yesterday afternoon with my results and said my echo looked good and blood work came back good as well. They lowered my tachrolimus AND my prednisone down to 12.5mg daily. That means that after my next biopsy on the 23rd, they should lower it to 10mg which means my biopsies will be every 4 weeks instead of every 2 weeks. Yay!
As for my neurologist appointment last week everything went well. The doctor said that my "headaches" are actually less severe migraines and prescribed a daily medication to help prevent them and if I do get one, take an Excedrin to get rid of it. He also prescribed a more heavy duty medication for when I begin to see symptoms of a more severe migraine. That medication should "abort" the migraine before it gets too bad. I don't have to see him again for 6 months so I have an appointment for late January.
I also began cardiac rehab last week and I didn't realize just how important it is. I thought I was doing good but when I think about it, I was just taking short, slow walks around my neighborhood. Now at rehab, things are getting amped up and they are really kicking my but. I do mostly cardio equipment to strengthen my heart and eventually will move on to bigger and better things to build some more muscle mass and then hopefully people will stop telling me how I need to gain weight.
Other than that, I have nothing really else to report. I will let you know how things go with my GP on Friday. Oh, and today marks 3 months since my transplant! Everyday I feel better bunt cardiac rehab showed me that I still have a long way to go. Thanks again to all of you for your continued support.
-Bryan
Wednesday, July 13, 2011
2 Month Biopsy & Check-up
Monday was the 2 month anniversary of my transplant and I was down in Philly to celebrate by getting a biopsy and a check-up with the transplant team. Since I had to be there at 7am, I went down the night before and as I arrived in the city Fireworks were going off on the Delaware River right next to the Ben Franklin Bridge. It was like they were celebrating my arrival! Not really but I like to dream lol.
I arrived at the Perelman Center at about 6:45am and was the 2nd on there which meant I would get to go right down to the Biopsy Suite and have my labs drawn there instead of after my check-up. The biopsy went much more smoothly than the last one. I mentioned to the Doctor that I had more discomfort after my last one and I think he took a little extra time to make sure he didn't cause any more discomfort than was necessary (which I greatly appreciate).
After the biopsy I headed back up to the clinic to meet with the Nurse Practitioner and go over my progress. She said everything was good and just moved around the times I take some medicines to try to help with my headaches. Speaking of the headaches, they have become a lot less frequent (only 2 or 3 times a week) and much less intense. They still want me to see a specialist about them so they can figure out what is causing them and prescribe the proper medication to treat them when I do get them. That appointment is scheduled for August 1st. I was also told that the 2 medications I have been taking at night to help me sleep should not be taken together (something about ending up like Heath Ledger). I was a little surprised by this only because I have been taking them together for the past 2 months and have still been having trouble sleeping. Instead I should try to take one or the other with a Benedryl to see if that helps but if it doesn't help, I can go back to taking the original 2 I was taking. Talk about confusing. She was worried that the over the counter Benedryl may not be strong enough since I have been taking the 2 prescriptions for so long but it seems to be working. They also want me to begin my Cardiac Rehab as soon as possible. I have been trying to get this started for the past few weeks. My cardiologist up here said his office would coordinate it so I can go to rehab at Mountainside Hospital. They said they faxed the information to the Rehab Center on June 27th but when I called the Rehab Center they said they never received anything from my Cardiologist's office but would contact him. I called back today and they have yet to receive anything from my Cardiologist which is very frustrating because my doctors in Philly are anxious to get me started in rehab. The sooner I begin rehab, the sooner I can return to work and start to get my life back into some sort of order.
I received the results from my Biopsy yesterday and there are no signs of rejection! They also lowered my prednisone to 17.5mg per day. I confirmed that once I get down to 10mg per day then my biopsies will be once a month instead of every 2 weeks like they are now. My next scheduled biopsy is on July 26th. I have already reconfirmed that this is the correct date and checked on the MyPennMedecine App on my iPad that it is in there for that date. I have my reservations for both of my upcoming appointments. I have really lucked out with Hotels. They have been having some great deals this summer so the cost has been pretty minimal for me to stay over the night before. I am so grateful for everyone who has donated to Hrt4Bryan to make the travel/medical expenses minimal for me, especially now that short term disability has run out and I am now going on long term disability for the next 5 months. I am also looking into the Gift of Life's Transplant House which provides housing to transplant recipients as well as their families when they need to travel to the city for appointments.
Now that I can drive I have driven myself to my last 2 appointments and continue to do so in the future. I get a little anxious when there is a lot of traffic on major highways so I will continue to stay away from the Turnpike and Parkway for the time being. Other than that things are going ok. I still have the rash/acne from the steroids I am on and my doctors said that probably won't clear until my dose is down to 5mg which is slightly disappointing because that seems so far away. Luckily it is mostly on my body and very minimal on my face. I have also began Therapy to help me deal with all the emotional stress that I been through the past year and how to cope with everything better than I have been.
Once again, thank you everyone for all of your support this past year. It has been a very difficult time in my life and I could not have done it without each and everyone of you. If you would like to know any more information about anything or just want to say "Hello" you can email me directly at hrt4bryan@gmail.com. Thanks again and I will let you know how things work out with cardiac rehab.
-Bryan
I arrived at the Perelman Center at about 6:45am and was the 2nd on there which meant I would get to go right down to the Biopsy Suite and have my labs drawn there instead of after my check-up. The biopsy went much more smoothly than the last one. I mentioned to the Doctor that I had more discomfort after my last one and I think he took a little extra time to make sure he didn't cause any more discomfort than was necessary (which I greatly appreciate).
After the biopsy I headed back up to the clinic to meet with the Nurse Practitioner and go over my progress. She said everything was good and just moved around the times I take some medicines to try to help with my headaches. Speaking of the headaches, they have become a lot less frequent (only 2 or 3 times a week) and much less intense. They still want me to see a specialist about them so they can figure out what is causing them and prescribe the proper medication to treat them when I do get them. That appointment is scheduled for August 1st. I was also told that the 2 medications I have been taking at night to help me sleep should not be taken together (something about ending up like Heath Ledger). I was a little surprised by this only because I have been taking them together for the past 2 months and have still been having trouble sleeping. Instead I should try to take one or the other with a Benedryl to see if that helps but if it doesn't help, I can go back to taking the original 2 I was taking. Talk about confusing. She was worried that the over the counter Benedryl may not be strong enough since I have been taking the 2 prescriptions for so long but it seems to be working. They also want me to begin my Cardiac Rehab as soon as possible. I have been trying to get this started for the past few weeks. My cardiologist up here said his office would coordinate it so I can go to rehab at Mountainside Hospital. They said they faxed the information to the Rehab Center on June 27th but when I called the Rehab Center they said they never received anything from my Cardiologist's office but would contact him. I called back today and they have yet to receive anything from my Cardiologist which is very frustrating because my doctors in Philly are anxious to get me started in rehab. The sooner I begin rehab, the sooner I can return to work and start to get my life back into some sort of order.
I received the results from my Biopsy yesterday and there are no signs of rejection! They also lowered my prednisone to 17.5mg per day. I confirmed that once I get down to 10mg per day then my biopsies will be once a month instead of every 2 weeks like they are now. My next scheduled biopsy is on July 26th. I have already reconfirmed that this is the correct date and checked on the MyPennMedecine App on my iPad that it is in there for that date. I have my reservations for both of my upcoming appointments. I have really lucked out with Hotels. They have been having some great deals this summer so the cost has been pretty minimal for me to stay over the night before. I am so grateful for everyone who has donated to Hrt4Bryan to make the travel/medical expenses minimal for me, especially now that short term disability has run out and I am now going on long term disability for the next 5 months. I am also looking into the Gift of Life's Transplant House which provides housing to transplant recipients as well as their families when they need to travel to the city for appointments.
Now that I can drive I have driven myself to my last 2 appointments and continue to do so in the future. I get a little anxious when there is a lot of traffic on major highways so I will continue to stay away from the Turnpike and Parkway for the time being. Other than that things are going ok. I still have the rash/acne from the steroids I am on and my doctors said that probably won't clear until my dose is down to 5mg which is slightly disappointing because that seems so far away. Luckily it is mostly on my body and very minimal on my face. I have also began Therapy to help me deal with all the emotional stress that I been through the past year and how to cope with everything better than I have been.
Once again, thank you everyone for all of your support this past year. It has been a very difficult time in my life and I could not have done it without each and everyone of you. If you would like to know any more information about anything or just want to say "Hello" you can email me directly at hrt4bryan@gmail.com. Thanks again and I will let you know how things work out with cardiac rehab.
-Bryan
Wednesday, July 6, 2011
8 Weeks (at least that date is correct)
Other than that nothing new to report here. I will let you all know how things go on Monday with my check-up and biopsy. Hope you all enjoyed the 4th of July!
-Bryan
Friday, July 1, 2011
Surgical Check-up
Yesterday I drove myself down to Philly for my post op check-up with Dr. Pochettino. It was my first time driving down to Philly by myself since my whole transplant process started nearly a year ago and it was the longest drive I've taken since being allowed to drive again. I took the "back way" down to through Princeton and avoided The Parkway and Turnpike. I don't think I'm quite ready for a long drive on those yet (but then again, is anybody ever really ready to drive on them?). Going that way takes a little longer but my family and I decided it would be better because there were more places for me to pull over and take a break if I needed to. It felt really good driving and I wasn't anxious or nervous during it at all. I guess driving is like riding a bike, you never really forget how to do it.
I got down to The Perelman center about 11 a.m. because I needed to get a chest X-ray before my 12:15 appointment. I was done with radiology around 11:45 and then had some paperwork to drop off at the Transplant Clinic which only took a few minutes. I checked in with Dr. Pochettino at about noon and I already could tell it wasn't going to go smoothly. The receptionist kept asking if I was positive my appointment was today and I pulled up the MyPennMedicine App on my iPad and showed her the appointment. She then found my appointment but couldn't "me" in the computer. Apparently radiology never checked me out so I wasn't able to check me in at the doctor's office. I guess she figured it out because a few minutes later she gave me my paperwork and told me to have a seat and wait to be called. I waited about twenty minutes before the Nurse came out called my name, and again asked me if I was sure that my appointment was today and then asked who referred me to Dr. Pochettino. I told her that he preformed my heart transplant so I guess the Transplant team would be the referrers. She seemed surprised that I was there for a post op visit but I also saw the light go off above her head as to why my name wasn't familiar to her. She called me into the exam room about ten minutes later where she went over my medication list and asked the usual questions. She left the room and I proceeded to wait another half hour for Dr. Pochettino to come in. He asked how I was feeling, examined my incisions, I asked a few questions and then we were done. He said everything looked good and that everything else would be handled by the Transplant team. All that waiting for an exam that took less than ten minutes.
By this time it was after 1:30 p.m. and I was starving. I went down to the Gia Pronto Cafe to grab something to eat. There, I ran into my social worker and was reminded that I had want to speak with her. I asked if I could stop by to see her after lunch and she said that would be fine. I got a salad from there which was huge! I could barely eat all of it. I could feel myself starting to wind down and was getting concerned about making the drive home the same day. I decided it would be best if I got a hotel room for the night and drove home the next morning fully rested. Plus I was nervous about driving in rush hour as it was nearly 2 p.m. and I didn't know how long I would be with my social worker. And on top of everything else, President Obama was in the city for a fundraising event so traffic was even worse than it normally is. I booked a room at the Sheraton down the street which worked out nicely because they were having a special so the room was pretty inexpensive. I had discussed this option with my Dad before hand and packed an overnight bag just in case I needed it.
After I spoke with my social worker I checked into the hotel and took a little nap. I told my friend Kris that my plans had changed and I would be staying in the city for the night. He stopped by and we went out to dinner and that was my exciting night in Philly. I woke up this morning, showered, packed, and then drove home. I ended up meeting my Friend Cait for lunch because she is leaving for Ireland tonight to finish her masters program in Dublin and I wanted to see her before she left so although I left at about 10 a.m., I didn't actually step foot into my house until about 3 p.m.. Again, there were no problems with the drive except when I was on my way home from lunch. I didn't think about traffic in Bergen County on the Friday before the Fourth of July weekend. I took mostly backroads (to again, avoid the Parkway which I'm sure was a parking lot) but was still a little anxious by time I got home. It was nice to regain some of my independence I find it fitting that it happened right before Independence Day.
My next Check-up/Biopsy is scheduled for next Thursday, the 7th. I'm going to talk to my Dad tonight about what the game plan is going to be. I have to be there at 7a.m. again so we're going to have to figure out if if he is going to come down with me and if we should go down the night before so we don't to get up quite so early. The good thing about having the biopsy done at The Perelman Center is they only use a local anesthesia so I could drive myself down the the night before and then home after the biopsy. I don't think I'm ready to do the trip by myself in one day, especially since I would have to leave the house by 5 a.m. which means I would probably get up at 4 a.m.. All logistics that we will figure out. Thanks again to everyone for all of your support and generous donations that make these trips less of a financial burden. I know I've said it probably a million times now, but I feel so blessed and loved to have such wonderful people in my life who are willing to help others in their time of need.
-Bryan
I got down to The Perelman center about 11 a.m. because I needed to get a chest X-ray before my 12:15 appointment. I was done with radiology around 11:45 and then had some paperwork to drop off at the Transplant Clinic which only took a few minutes. I checked in with Dr. Pochettino at about noon and I already could tell it wasn't going to go smoothly. The receptionist kept asking if I was positive my appointment was today and I pulled up the MyPennMedicine App on my iPad and showed her the appointment. She then found my appointment but couldn't "me" in the computer. Apparently radiology never checked me out so I wasn't able to check me in at the doctor's office. I guess she figured it out because a few minutes later she gave me my paperwork and told me to have a seat and wait to be called. I waited about twenty minutes before the Nurse came out called my name, and again asked me if I was sure that my appointment was today and then asked who referred me to Dr. Pochettino. I told her that he preformed my heart transplant so I guess the Transplant team would be the referrers. She seemed surprised that I was there for a post op visit but I also saw the light go off above her head as to why my name wasn't familiar to her. She called me into the exam room about ten minutes later where she went over my medication list and asked the usual questions. She left the room and I proceeded to wait another half hour for Dr. Pochettino to come in. He asked how I was feeling, examined my incisions, I asked a few questions and then we were done. He said everything looked good and that everything else would be handled by the Transplant team. All that waiting for an exam that took less than ten minutes.
By this time it was after 1:30 p.m. and I was starving. I went down to the Gia Pronto Cafe to grab something to eat. There, I ran into my social worker and was reminded that I had want to speak with her. I asked if I could stop by to see her after lunch and she said that would be fine. I got a salad from there which was huge! I could barely eat all of it. I could feel myself starting to wind down and was getting concerned about making the drive home the same day. I decided it would be best if I got a hotel room for the night and drove home the next morning fully rested. Plus I was nervous about driving in rush hour as it was nearly 2 p.m. and I didn't know how long I would be with my social worker. And on top of everything else, President Obama was in the city for a fundraising event so traffic was even worse than it normally is. I booked a room at the Sheraton down the street which worked out nicely because they were having a special so the room was pretty inexpensive. I had discussed this option with my Dad before hand and packed an overnight bag just in case I needed it.
After I spoke with my social worker I checked into the hotel and took a little nap. I told my friend Kris that my plans had changed and I would be staying in the city for the night. He stopped by and we went out to dinner and that was my exciting night in Philly. I woke up this morning, showered, packed, and then drove home. I ended up meeting my Friend Cait for lunch because she is leaving for Ireland tonight to finish her masters program in Dublin and I wanted to see her before she left so although I left at about 10 a.m., I didn't actually step foot into my house until about 3 p.m.. Again, there were no problems with the drive except when I was on my way home from lunch. I didn't think about traffic in Bergen County on the Friday before the Fourth of July weekend. I took mostly backroads (to again, avoid the Parkway which I'm sure was a parking lot) but was still a little anxious by time I got home. It was nice to regain some of my independence I find it fitting that it happened right before Independence Day.
My next Check-up/Biopsy is scheduled for next Thursday, the 7th. I'm going to talk to my Dad tonight about what the game plan is going to be. I have to be there at 7a.m. again so we're going to have to figure out if if he is going to come down with me and if we should go down the night before so we don't to get up quite so early. The good thing about having the biopsy done at The Perelman Center is they only use a local anesthesia so I could drive myself down the the night before and then home after the biopsy. I don't think I'm ready to do the trip by myself in one day, especially since I would have to leave the house by 5 a.m. which means I would probably get up at 4 a.m.. All logistics that we will figure out. Thanks again to everyone for all of your support and generous donations that make these trips less of a financial burden. I know I've said it probably a million times now, but I feel so blessed and loved to have such wonderful people in my life who are willing to help others in their time of need.
-Bryan
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