"How Do You Measure A Year In The Life?"

I know it's been a while since I've posted but this is such a great reason to get back to it! Today marks one year since I received my new heart! I can't believe it has been a year already. It feels like it was just yesterday they came in and told me I would be getting a new heart. 

Team hrt4bryan at The Dash

Besides my one year anniversary, I've been up to quite a lot the past month. In April, I participated in the 17th Annual Dash for Donor & Tissue Awareness and it was truly inspiring event. They said it was their biggest success yet with over 6,000 people participating! My team, hrt4bryan, managed to raise over $1,500 even though there was only six of us! I mention the number of team members because next year I want the team to be even bigger and better! I also plan on taking part in the 5k run and not just the walk! I would like to get as many people as I can to join the team and participate with us in either the 10k run, 5k run or 3k walk and if you can't participate I ask that you donate towards the team! I'm brining this up now because I plan on the team having great shirts to help with better performance and make sure we all have a great time! If you're interested in Joining the team send an email to hrt4bryan@gmail.com and I'll keep you posted as to when you can sign up and all the other information!


I also went down to Philly earlier this for my "annual" appointment. Unfortunately, it didn't go as planned. Once again, my vein collapsed and the biopsy and right heart cath were not able to be preformed. Although I was bummed they assured me that it was not my fault and despite my efforts to keep hydrated, my heart is working too well and is allowing my body to process liquids better than expected. They also said that the combination of my naturally small veins, scar tissue from privies biopsies and the lidocaine used to numb the area is a factor into why it collapsed. I will going down to Philly again on Tuesday for a Dobutamine Stress Test but they will not be able to do a biopsy the same day. The biopsy is rescheduled for May 30th, after I return from my trip to Italy. They are not too worried about the results since I have never showed any signs of rejection in the past year.

A photo of me last weekend, a little
less than my 1 year anniversary

Although I celebrate my new lease on life today, I can't help but feel for my donors family as they are mourning the anniversary of the loss of their family member, something I know all too well. Especially with this weekend being Mother's Day. This last year has truly been so amazing and I have learned to live each day to it's fullest and take nothing for granted. So to answer the question I asked in the title of this post, you measure it in love. I learned that saying in High School when I saw the Broadway musical Rent, from which the quote is from, but these words have never meant so much to me. Without all the love and support that everyone has showed over the past year I would have never been able to get through it. I can't thank you all enough and I look forward to continue my very long journey down the yellow brick road!


Bryan

Tin Man Turns 27!

Today is my 27th birthday. This may not seem like a big deal, but given my condition about a year ago, it's a birthday tab I might not have made it to with  out receiving my new heart. My Facebook page has been blowing up with birthday wishes and you may also notice the blog has been changed to reflect my new age. I guess this means that I've officially entered my late 20's. I'm celebrating with friends and family this weekend in what I'm hoping will be one of my best birthdays yet!


In Philly news, I won't have to back down for a biopsy until May 8th which will be my annual checkup! Don't forget though, I will be down in two and a half weeks for Dash for Organ and Tissue Donation and there is still time to support me!


Thank you for all of your support the past year and I link forward to all the great things to come with my new age! I couldn't have gotten here with out you!


Bryan

Bitter Sweet Weeks

An old picture of me and two of my
coworkers, Lauren & Debbie

The past few weeks have been just that. They've been full of ups and downs. Happy and sad. It started a few weeks ago when I went out for Happy Hour with my coworkers from Smiths Detection. It was so great to see everyone and it was supposed to be our last big hurrah before everyone got their warn letters with the date of when we would be getting laid off. Unfortunately, they started giving out some letters early so that put a slight damper on things. The next day I had to drive down to Philly for my follow up appointment with my Neurologist about my headaches. As I was driving down, I got a call from the HR department informing that my letter was being emailed to me. She explained that my last day of "work" would be March 30th. That was also the one year anniversary of the last time I worked in the office. That meant that, according to the company's practice, I would be taken off of insurance and have to go on COBRA. Thankfully since I would be getting let go in the end of March anyway, they made and exception and are allowing me to keep my benefits until then. I got good news from the Neurologist and he didn't make any changes to my medication for my headaches. The appointment literally took five minutes. So I drove two hours down and two hours back for a five minute appointment. I took some extra time to go visit my nurses on Founders 10, the unit I was in for the weeks before I got my new heart. It just so happened that two of my favorite nurses were working. I was so happy to see them! They made my time there so much more bearable. Not just those two, but the entire staff was amazing!

A week and a half later, I was back down to Philly for my nine month biopsy. As has been the case since being off prednisone, I continue to show no signs of rejection and all of my "levels" are right where my doctors want them to be. While I'm very excited that I continue to get healthy and haven't had any issues since my transplant, it makes me sad that after all this effort to get healthy I will not have a job to return to. I know that this, as well as most things that have happened to me in the past year and a half, are beyond my control. I just feel like every time I get back up from one thing, I get kicked down by another. I'm looking at 2012 as a year of new beginnings and finally ending so many chapters of my life. The scariest part is that as these chapters end, there is so far nothing to write in the upcoming ones. That being said, I have found out that even though I am still on long term disability I can still get a part time job to acclimate myself back into the working world until I am cleared to return to work on a full time basis. My next biopsy is scheduled for March 7th. After that, biopsies will be less frequent, although I'm confused as to what it will be. I thought it would be two months (for my annual) and then it would be three moths after that but the said six weeks after March. I will clarify this when I go down in March.

On a happier note, I woke up this morning to find out that a girl I went to grade school with got a much needed pancreatic transplant! I was so overjoyed to hear this. She has been through the ringer and if anyone deserves it, she does. She is probably one of the strongest people I know. I would also like to take this time to remind you that in less than two months I will be participating in the 17th Annual Dash for Organ & Tissue Donor Awareness. Please support me in this incredible event by making a donation towards my 3k walk. Without the generous gifts that donors provide, so many people would not be here today. One person donating their vital organs and tissue can save the lives of as many as eight other people - and make a difference in the lives of many more.


As always, I thank you for your continued support!


Bryan

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

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!

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.

Prednisone: A nasty drug!

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

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