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| An old picture of me and two of my coworkers, Lauren & Debbie |
As always, I thank you for your continued support!
Bryan
Bryan's Journey with a New Heart!
Thursday, February 16, 2012
Bitter Sweet Weeks
As always, I thank you for your continued support!
Bryan
Friday, January 13, 2012
8 Month Biopsy Results & the Annual Dash!
So i went for my eight month biopsy earlier this week and it was my first biopsy since I've been off prednisone. I'm pleased to announce that every thing came back great and I continue to show no signs of rejection! All my levels came back perfect except for my liver enzymes. They were slightly elevated but aren't sure why. They thought it might have been a side effect from a medication but I am not on that medication. The docs are sending a script for me to have blood work done to see if it has gone down. Besides a biopsy, I also had an echo cardiogram. The results from that were fantastic! My eject fraction rate was at 60% which is perfect! Before transplant I think it was down around 10% so this is a huge improvement! And considering it's a new heart, I guess that's expected.
This April, I am pleased to announce that I will be participating the the 17th Annual Dash for Organs and Tissue Donor Awareness! As many of you may know, last year several of my friends participated in my honor. This year we have created a Hrt4Bryan Team and I am so happy that I will be able to participate. You can make donations to the team or to me specifically by clicking here. I am hoping to recruit some more friends from up here in North Jersey to participate as well (so if you are one of those people reading this, be prepared!). Any amount you can donate is greatly appreciated. I have set up a personal goal of $500 but I know that with all of your support I will be able to surpass that so please help! I will be taking place in the 3k walk but some of my other friends will be doing the 5k run! This is the ultimate test for me. I feel that if I am able to finish the walk I have made huge strides in my recovery, especially since it will on have been eleven months after my transplant. It is also meaningful because at this time last year, I was unable to walk a single block without getting tired and out of breath.
Thank you again for all of your support the last eight months! There is no way I would have been able to make it through all that has happened with you! Also, for more up-to-date news as it happens, be sure to check out the Hrt4Bryan Facebook page and "Like" it if you haven't already!
-Bryan
Thank you again for all of your support the last eight months! There is no way I would have been able to make it through all that has happened with you! Also, for more up-to-date news as it happens, be sure to check out the Hrt4Bryan Facebook page and "Like" it if you haven't already!
-Bryan
Friday, December 30, 2011
Bye Bye Prednisone & 2011!
So my December biopsy came back great. Still no signs of rejection and I am officially off prednisone! I'm so happy to be off of that drug. Even though I was only on 2.5mg I was still having side affects (but they could still be lingering from when I was sick in November and they increased it). Mostly with the body acne. Hopefully it will clear up within a week or two. Now that I'm off prednisone, I need at least three good biopsies before my doctors will even consider two big things. The first being returning to work. As of right now, they say may but could be as early as April a long as my biopsies show no rejection and I don't keep getting sick. That being said, I was sick last week with a cold. My sinuses were throbbing, nose was stuffed and I was sneezing an coughing like crazy. Luckily I was able nip it in the bud and took robitussen and cleaned out my sinuses with a Nettie Pot. The second thing that would happen is my biopsies would be every three months instead of every four weeks! I'm super excited about not having to make so many trips to Philly. Of course the hitch is that my one year anniversary, and subsequent annual checkup, is in May. So my three months won't really start until after that. I can't believe I'm already talking about my one year anniversary. It feels like yesterday I was in the hospital waiting for the heart.
Some other good news is that I joined a new gym so I continue to build up my strength and endurance. Hopefully I'll bulk up a little bit too so people will stop complaining about how skinny I am. I have the same body type as my mom. Not much else I can do about it besides getting fat, which is not an option.
That's all I really have to share for now. My next biopsy is scheduled for January 10, 2012 and I'm hoping for an even happier and healthier new year. Not just for me, but for all of you as well! My annual "Year in Pictures" video is below. I will get it up on YouTube and provide a link to the hi-res version soon. Happy New Year!
Some other good news is that I joined a new gym so I continue to build up my strength and endurance. Hopefully I'll bulk up a little bit too so people will stop complaining about how skinny I am. I have the same body type as my mom. Not much else I can do about it besides getting fat, which is not an option.
That's all I really have to share for now. My next biopsy is scheduled for January 10, 2012 and I'm hoping for an even happier and healthier new year. Not just for me, but for all of you as well! My annual "Year in Pictures" video is below. I will get it up on YouTube and provide a link to the hi-res version soon. Happy New Year!
Sunday, December 11, 2011
Yellow Brick Road Gets Bumpy (and Heavily Medicated)
Ok, so I know I haven't posted in a while. It's been an interesting past few weeks. It started with me getting a small bout of food poisoning the beginning on November. My friend Cait had it as well. She recovered in a day or too while I suffered for a couple of weeks. When I went down to Philly for my November biopsy, I told my docs and they drew extra blood work to see what it was (they also wanted a stool sample but there was no way I was going to do that. Plus, I get very poop shy lol).
The biopsy results once again came back great. No signs of rejection and all my medication levels were where they were supposed to be. The blood work for my stomach however came back "inconclusive" but I was feeling better by this time so it was no worry anymore.
The following weekend I began to get a sore throat. I took Tylenol and cepecol drops to try to make it feel better but nothing seemed to help. I went to my general practitioner as soon as it started. The doctor I saw prescribed an antibiotic and did a strep test, which came back negative. After a few days of it continuing to get worse, I went back to my doctor. I explained how everytime I swallowed it felt like I was swallowing razor blades and the pain was shooting up into my ears. He prescribed me a Z-pack and increased my prednisone to 40mg a day. This was the day before I was supposed to go from 5mg to 2.5mg. I called my doctors in Philly to make sure the change was ok. They said it was fine but it would most likely cause my next biopsy to be pushed back because I need to be on the lower dose of prednisone for two weeks before I can have a biopsy. They also said that with me getting sick so frequently, it would probably be best if I didn't return to work yet. They pushed my return to work back to May. They said most transplant patients don't return to work before a year after transplant and that I was being very ambitious with hoping to return by November.
I felt the side affects from the increased prednisone immediately. It was a big jump to go from 5mg daily to 40mg. I text my friend Nicole "The bitch is back" and her response was "I didn't know it left." This is what i have to deal with lol. Vicky noticed it first hand and unfortunately, my Dad took to brunt force of my moodiness but he was oblivious to it mostly so it was all good. I also noticed the side affects of the Z-pack with my stomach but that resolved itself once I stopped it so the whole stomach issue finally seems to be cleared up.
After about a week with the increased medication I finally began to feel better and my next Biopsy is this Wednesday morning (pushed back one week). I have a couple meetings with the social worker and the insurance coordinator to help figure out what will happen once I get layer off from work, whenever that may be. They are trying to be advocates for me in trying to collect as much information as they can for me so things aren't so stressful for me. My doctors want me to avoid high stress situations. Easier said than done when your future is uncertain and people are being less than cooperative with them. But I'm trying to take things one day at a time and not worry about anything other than my health. There is also a Transplant Holiday Party Wednesday night but unfortunately I won't be able to attend. With having to be up so early to get to the hospital I would be completely exhausted and then would have to still drive home after. If someone was coming with me I would feel more comfortable with going. Hopefully next year I can attend.
That's all the news for now. Hopefully my health continues to get better and I don't get sick again. I feel like this will be extremely difficult with it being cold and flu season but hand sanitizer and I have become even closer the past few weeks. I will post the results of my biopsy soon. I would like to say by the end of the week but that's being ambitious lol. Thank you everyone for all of your continued support.
-Bryan
The biopsy results once again came back great. No signs of rejection and all my medication levels were where they were supposed to be. The blood work for my stomach however came back "inconclusive" but I was feeling better by this time so it was no worry anymore.
The following weekend I began to get a sore throat. I took Tylenol and cepecol drops to try to make it feel better but nothing seemed to help. I went to my general practitioner as soon as it started. The doctor I saw prescribed an antibiotic and did a strep test, which came back negative. After a few days of it continuing to get worse, I went back to my doctor. I explained how everytime I swallowed it felt like I was swallowing razor blades and the pain was shooting up into my ears. He prescribed me a Z-pack and increased my prednisone to 40mg a day. This was the day before I was supposed to go from 5mg to 2.5mg. I called my doctors in Philly to make sure the change was ok. They said it was fine but it would most likely cause my next biopsy to be pushed back because I need to be on the lower dose of prednisone for two weeks before I can have a biopsy. They also said that with me getting sick so frequently, it would probably be best if I didn't return to work yet. They pushed my return to work back to May. They said most transplant patients don't return to work before a year after transplant and that I was being very ambitious with hoping to return by November.
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| Prednisone: A nasty drug! |
After about a week with the increased medication I finally began to feel better and my next Biopsy is this Wednesday morning (pushed back one week). I have a couple meetings with the social worker and the insurance coordinator to help figure out what will happen once I get layer off from work, whenever that may be. They are trying to be advocates for me in trying to collect as much information as they can for me so things aren't so stressful for me. My doctors want me to avoid high stress situations. Easier said than done when your future is uncertain and people are being less than cooperative with them. But I'm trying to take things one day at a time and not worry about anything other than my health. There is also a Transplant Holiday Party Wednesday night but unfortunately I won't be able to attend. With having to be up so early to get to the hospital I would be completely exhausted and then would have to still drive home after. If someone was coming with me I would feel more comfortable with going. Hopefully next year I can attend.
That's all the news for now. Hopefully my health continues to get better and I don't get sick again. I feel like this will be extremely difficult with it being cold and flu season but hand sanitizer and I have become even closer the past few weeks. I will post the results of my biopsy soon. I would like to say by the end of the week but that's being ambitious lol. Thank you everyone for all of your continued support.
-Bryan
Thursday, November 10, 2011
5 Month Biopsy Results (4 Weeks Late) and a Bunch of Other News
5 Month Biopsy (October)
My biopsy last month went very smoothly. I was hydrated and Dr. Goldberg was done before I even knew he started. The biopsy showed that I continue to show no signs of rejection. My blood work however, was a little different. It showed that my Tacrolimus levels were very low and if they didn't increase, they would not be able to lower my prednisone from 7.5mg to 5mg. They increased my daily dose of Tacrolimus and sent me a script to get blood work done the following week to ensure that, if my levels were at an acceptable level, I could decrease my Prednisone two weeks before my next Biopsy. I had the blood work done and my levels were in the acceptable range (between 8 & 15) and they were able to decrease my prednisone to 5mg the following week!
Dentist Appointments
A couple days before my October biopsy, I had my first dentist appointment since my transplant. Once again, I have no cavities (never had one in my life!). My dentist wanted me to look into getting my wisdom teeth removed. He has been asking me to get them out for a couple of years but with everything going on with my heart, it has been put on the back burner. I spoke with my doctors in Philly, and although they preferred that I wait a year after transplant before having a surgery, they agreed to sign off to allow for me to have them taken out when I told them I would like to return to work without any surgeries in my future. I met with the Oral Surgeon this week, Dr. Alberto who is the head of oral surgery at UMDNJ, and after she looked at a more recent panoramic X-ray of my mouth, she determined that the risk of taking the the impacted teeth out way the benefits. My lower wisdom teeth, are very close to the main nerve in my jaw and there is a possibility that I may not get feeling back in my jaw. The upper wisdom teeth are very close to my sinuses and they may have to do some reconstruction to make sure they are not affected. Since I am immunosuppressed, it may take longer to heal and I am at a higher risk of infection. Now, there is also the issue of my "Baby Tooth." As some of you may know, I still have a baby tooth in my mouth that never fell out and the Adult Tooth is now impacted in my bone. She would also take this out and again, reconstruction would be necessary so as of right now, all dental work (on my wisdom teeth anyway) is on hold until they start to cause a problem, which so far, they haven't.
Returning to Work
I was scheduled to return to work on Monday November 21st, depending on what the oral surgeon said. Since the wisdom teeth will not removed I was planning on returning on this date. However, last week my boss Lauren called me and informed me that Smiths Detection's Morristown office will be closing and all employees will be getting laid off by the end of the fiscal year (July 30th, 2012). I spoke with HR and they said that if I was to return to work on the 21st, they would not be able to guarantee that I would be working for the six months needed to be eligible for state unemployment. Since I am already on Federal Social Security Disability, I may be exempt from the six month work period but I have been unable to get in touch with a state disability representative to get a definitive answer. If I am unable to collect state unemployment, my doctors will keep me out on Long term disability so I still have some form of income. If I stay on Long Term Disability, my benefits with Smiths Detection will run out the end of January, 2012 as that will be the twelve month period that the company keeps employees on their benefits. At that time I would either have to get individual insurance or go on COBRA.
I hope to get answers as to where I stand for unemployment soon. Until then, I am once again asking for your help. If you know of any one who is looking for a graphic designer or a company that is hiring one, please email hrt4bryan@gmail.com with the information and I will apply or reply with my resume. I thank you all in advance for your help with this and for all of your support throughout the past year.
I had my six month biopsy yesterday and I will update the blog with my results as soon as I get them. Thank you again for everything!
-Bryan
My biopsy last month went very smoothly. I was hydrated and Dr. Goldberg was done before I even knew he started. The biopsy showed that I continue to show no signs of rejection. My blood work however, was a little different. It showed that my Tacrolimus levels were very low and if they didn't increase, they would not be able to lower my prednisone from 7.5mg to 5mg. They increased my daily dose of Tacrolimus and sent me a script to get blood work done the following week to ensure that, if my levels were at an acceptable level, I could decrease my Prednisone two weeks before my next Biopsy. I had the blood work done and my levels were in the acceptable range (between 8 & 15) and they were able to decrease my prednisone to 5mg the following week!
Dentist Appointments
A couple days before my October biopsy, I had my first dentist appointment since my transplant. Once again, I have no cavities (never had one in my life!). My dentist wanted me to look into getting my wisdom teeth removed. He has been asking me to get them out for a couple of years but with everything going on with my heart, it has been put on the back burner. I spoke with my doctors in Philly, and although they preferred that I wait a year after transplant before having a surgery, they agreed to sign off to allow for me to have them taken out when I told them I would like to return to work without any surgeries in my future. I met with the Oral Surgeon this week, Dr. Alberto who is the head of oral surgery at UMDNJ, and after she looked at a more recent panoramic X-ray of my mouth, she determined that the risk of taking the the impacted teeth out way the benefits. My lower wisdom teeth, are very close to the main nerve in my jaw and there is a possibility that I may not get feeling back in my jaw. The upper wisdom teeth are very close to my sinuses and they may have to do some reconstruction to make sure they are not affected. Since I am immunosuppressed, it may take longer to heal and I am at a higher risk of infection. Now, there is also the issue of my "Baby Tooth." As some of you may know, I still have a baby tooth in my mouth that never fell out and the Adult Tooth is now impacted in my bone. She would also take this out and again, reconstruction would be necessary so as of right now, all dental work (on my wisdom teeth anyway) is on hold until they start to cause a problem, which so far, they haven't.
Returning to Work
I was scheduled to return to work on Monday November 21st, depending on what the oral surgeon said. Since the wisdom teeth will not removed I was planning on returning on this date. However, last week my boss Lauren called me and informed me that Smiths Detection's Morristown office will be closing and all employees will be getting laid off by the end of the fiscal year (July 30th, 2012). I spoke with HR and they said that if I was to return to work on the 21st, they would not be able to guarantee that I would be working for the six months needed to be eligible for state unemployment. Since I am already on Federal Social Security Disability, I may be exempt from the six month work period but I have been unable to get in touch with a state disability representative to get a definitive answer. If I am unable to collect state unemployment, my doctors will keep me out on Long term disability so I still have some form of income. If I stay on Long Term Disability, my benefits with Smiths Detection will run out the end of January, 2012 as that will be the twelve month period that the company keeps employees on their benefits. At that time I would either have to get individual insurance or go on COBRA.
I hope to get answers as to where I stand for unemployment soon. Until then, I am once again asking for your help. If you know of any one who is looking for a graphic designer or a company that is hiring one, please email hrt4bryan@gmail.com with the information and I will apply or reply with my resume. I thank you all in advance for your help with this and for all of your support throughout the past year.
I had my six month biopsy yesterday and I will update the blog with my results as soon as I get them. Thank you again for everything!
-Bryan
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.
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
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
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
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| 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
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