Live Life then Give Life, Please be an Organ Donor.

Wednesday, January 30, 2013

We Got This

Hello World!

Its been a while and my, my, my life sure is interesting.

I had my 6 month post transplant check up. Everything went great. I had to update a few extra tests so I stayed in Cleveland for 4 days. One of the tests was a PH probe. If you've never had one it can be done in 2 ways. A BRAVO, where they sedate you and attach this small monitor to your throat - you don't feel it - and it monitors your acid reflux. And the most common way is threading a small tube through your nose and down your throat. I of course experienced the tube, SUCKS! It doesn't bother some people, I found it very annoying and made it hard to swallow solid foods. The food felt like it would tug on the tube when it passed by. Ugh!! I almost choked swallowing my pills! haha. Thankfully the results came back great and I'm all set for a few years.

My PFTs, Lung Function Test, was at an amazing 96%! I'm not sure if my old lungs were ever that good. I don't believe I was ever above the 80s. So I'm floored. I'm only 4% away from 100 and that would be AMAZING to hit triple digits.

I think my appetite has hit an all time high, which is great! Maybe I'll actually get some meat on my butt so it doesn't hurt to sit on hard surfaces. I eat 3 meals a day, with a snack between breakfast and lunch, between lunch and dinner, and then I am sometimes hungry 2-3 hours after dinner! I can eat an entire small 12inch pizza by myself and still be hungry. That may sound piggish but I'm coming from a position on half a slice would be enough for the day. I love food, I LOVE cooking these days! My Dad is awesome in teaching my his techniques and recipes. I probably call him 3-4 times a week for cooking tips. Cooking has definitely given my something to be proud of again.

My job is going well. I love it there. I'm only part time so naturally I wish I had more hours. But I think for just having a transplant 6 months ago, I'm doing pretty good. So I need to keep that into perspective and not push to hard and cause any sickness for myself. Its tough because I just want to go go go.

News on the Dad front is murky. His cancer is spreading. He went in house last week to have 2 small tumors removed off his liver and when they got in there the cancer had taken over his entire liver. In 2 weeks they had gone from small tumors to his whole liver, that's fast. They have also found markers in his blood stream. This is dangerous because the cancer can now land anywhere in his body. As a family we kind of thought we had done all we could, we have tried EVERYTHING they have thrown at us. And his oncologist basically told us, there is nothing left to try. Well thankfully my Dad's oncologist is leaving for another hospital so my Dads complicated and rare case got switched to the head of the oncology department. This gentlemen gave hope back to our family. He said there are 2 new drugs that just came out recently we can try, and also try Chemo again - which did hold off his cancer for 3 years! When my Dad was first diagnosed in July 2009, it was 6months-1year. Check him out now... 3 1/2 years later! So Suck It Cancer! We are all hopeful for the new therapies.

As a family, WE GOT THIS!

Breathe Easy

Tuesday, January 1, 2013

2012, It was a Roller Coaster

Hello World!

2012 was certainly a roller coaster of a year for me. I spent 2011-2012 New Years in the hospital. And things just got worse and worse as the year went on. I became almost immobile. Using a wheelchair for more things than I wanted to. I would be so exhausted, I'd sleep all the time. I would be in the hospital for 2 weeks and home for 1 then right back in house. By early July I was so sick and weak and lonely and sad and anxious and depressed and losing hope fast that I would make to my 27th birthday.

Then July 22, that magical day, 2 years, 2 months, and 2 days of waiting my beautiful donor graced me with a perfect pair of lungs. My year completely did a 180. Recovering from transplant surgery wasn't easy but after the last few years it felt like a cake walk most days. Sure I had to rebuild a lot of lost muscle, which I'm still working on, but the ability to breathe like a "normal" person is something I can't explain into words.

They say you don't know what you're missing if you've never had it. So the feeling of a "normal" breathe isn't something I can say I missed because I've never had that. When I was finally discharged from the hospital and walked out doors and the sun was shinning, I took the deepest breathe I could and just savored the moment. Its a moment I will NEVER forget. I understand that over time I could take that feeling for granted, but I hope I never do. At the risk of sounding corny, I have to remind people to take pleasure in the small everyday things. They really do mean more.

2012 was a roller coaster for my entire family as well. My Dad went through a very risky surgery to remove his cancer. The surgery was successful but his recovery was long and hard and he is still working on it. He had to start radiation because although all the cancer tumors were gone, they found cancer cells in his body. Most recently my Dad had a major infection. He developed a large abscess and needed to have it drained. When the Dr's put the drain tube in infection leak into his body and caused Septic Storm. Right now he is recovering from that and waiting to hear what the next step will be against this cancer shit. My Dad and the rest of us aren't giving up beating this thing back. Its just taking more power than we anticipated.

My older brother, Jason, who has Cystic Fibrosis too, has had a rough year. He has always been pretty good with his CF and hasn't needed much help from hospital stays and the heavy duty drugs. But in the fall he experienced bleeding in his lungs. He developed a small spot from his aorta that was leaking blood into his lungs. He had to have a dangerous surgery to fix it. They threaded a catheter in his legs up to his lungs and then "glued" the spot shut. They told his he could become paralyzed, have a collapsed lung, brain damage or die if things went wrong. And our CF hospital had only ever done this surgery on 3 other CF people. Luckily the surgery went well and fixed the problem. He had to layed up in the hospital for a week or so but it did the trick.

My younger brother, Ryan, had an uneventful year. He doesn't have CF. But he did have to witness his father suffer from cancer and both his siblings struggle with CF. He really stepped up to the plate and helped us all out. He became a huge support for me in Cleveland and I know he was a support for Jason and my Dad.

As for my Mother. There is just too much to say about her. Shes fantastic. The rock I lean on for EVERYTHING. And the glue that holds this entire family together. She sacrificed her time and sleep to be at the hospital for myself, dad and brother. She flew/drove back and forth from Cleveland to New Hampshire from July-September. She is such an incredible woman. And she suffered a lot of stress this year especially going through 3 life threatening surgeries in 2 months. She is just amazing. A "thank you" is not enough for her. She deserves it all and I intend on trying to give her just that.

2012 was a crazy year for me and my family. Here's to 2013 which will no doubt bring better things. Our family has gone through enough the last 3 years. It needs and wants a break.

I thank and love each one of you that took the time to wish me well, ask me how I'm doing, share a joke, send a funny picture, hope good things for me, and just keep my spirits up through it all. I really don't know where I'd be without you. Doesn't matter if you're just an internet friend and someone I've known forever. I am truly appreciative of all of you. You make me who I am and help keep in the right light. Much love and many thanks.

To my donor, you have made the biggest impact on my life. Thanks is not enough and never will be enough. I promise to you to live life, respect life, pay it forward, and forever celebrate your life on July 22. I truly believe I wouldn't be here today without you. You saved my life and gave me back to my family and friends. You will forever hold a special place in my heart and I can't wait to meet you in heaven many, many years from now.

To paraphrase Justin Bieber "It's a big big world, It's easy to get lost in it, And I'm not ready to call it quits, I know it's hard, believe me, That we can't go nowhere but up"

2013, I'm ready.

Breathe Easy