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

Wednesday, August 22, 2012

1 Month

Hello World!

Well today, August 22nd makes 1 month post transplant!!! AWESOMEEEEEEE!!!!!

I had a check up today and I'm doing great. Chest x-ray's look great, and everything is healing on schedule. Best part my PFTs, (Pulmonary Function Test) were at 66%!! Woooooooo!!!! Pre-transplant my PFTs were 17-20% on a good day. So it feels amazing to be able to take a deep breath. It has been so long since I've really felt my whole chest fill with air when I breathe in. I'm told that between 3-6 months is when my new lungs should plateau at their maximum capacity. My goal is 70% but anything higher would be stellar!

It still blows my mind when I wake up in the morning and I don't have to have a coughing session, followed by catching breath, and then usually more coughing. I can just wake up and get up! It was taking me at least an hour to get ready to go anywhere now, I can be out the door in 5-10 minutes. Everyday I am just so excited to start enjoying life again. I did as much as I could before but I still missed out on a lot. I feel like I have to make up for lost time and nothing is going to stand in my way. I'm going to push myself - sometimes too much. But its a learning process.

I still get frustrated with myself because stairs and inclines are hard, ok very hard. I have to keep reminding myself that I hadn't been able to walk really for most of 2012. And even before that exercise was really limited. The doctors and Physical Therapists are always telling me I'm doing great and not worry it will get easier. But I'm just impatient I guess. Rebuilding muscle is sooo HARD! Once its gone, it takes a lot to bring it back. So that would have to big my biggest frustration/complaint. I'm ready go... so my muscles need to get on board!

In other news, My Dad is doing well. He had major surgery to remove his cancer on Aug 17th. He is still in house but was finally allowed to eat Popsicles and broth today. Which he was thrilled about. Ice chips just weren't doing it, and I can agree! He is doing really well, the doctors said they got all the cancer. The only problem is a small portion of his right lung collapsed which caused him to be short of breath and require extra oxygen. He was on 4L and they have tapered him down 2L. The docs said tomorrow he may get to come off it all together. But his spirits are high and "enjoying" the hospital as much as you can, haha.

One last note, Thank you, thank you, thank you to my donor! Those words don't mean enough for what you have given me. Your generosity has impacted my life in bigger ways than I could imagine. You gave the ultimate gift and I promise to treat this precious gift with care and keep myself as healthy as possible. I plan on doing amazing things. Nothing can stop me now. And everywhere I go and everything I do, I'm taking a small piece (literally) of you with me. You will NEVER be forgotten.

Breathe Easy

Monday, August 20, 2012

Doing Great

Hello World!

Well its been 4 weeks and 2 days and I'm still going strong! Got my first bronch results back, NO REJECTION! So thats awesome. I also got my last 2 drain tubes pulled out today. Thats awesome as well. The only tube I got left in me is my feeding tube!!! Which I'll keep for a few more months, even though I'm not using it anymore. The Doctors want me to keep it in just in case. I'm soooo close to being tube free!!!!

As for my Dad, he is doing as well as can be for the surgery he had. The doctors said they got ALL the caner though! Yayy!! He is in a lot of pain and still isn't allowed to eat anything. I got to talk to him and that was great. Hopefully he won't have to be cooped up in the hospital too long.

My Mom has gone back to New Hampshire to be with my Dad. She'll come back when my Dad is on his feet. So in the mean time I've had 2 friends come stay with me and now my brother is staying with me. I miss my Mom though. Its a little weird to be in Cleveland without her. We are very close. BUT having my friends here was def fun. Like a mini vaca! And then having my brother here is nice, I was really missing my family.

Overall I'm doing great and my Dad is doing well. We couldn't ask for anything more!

"Guess illness is slowly but surely learning to not waste its time messing with the Benjamin family." - Phillip

Breathe Easy

Thursday, August 16, 2012

My Dad

Hello World!

Ok friends I need you to shift all the good thoughts and prayers and kind words from me to my Dad. As I've mentioned before he has stage 4 colorectal cancer that has also spread to his liver. Today he is going to have his 1st surgery to place some kind of mesh net near his heart to catch blood clots. Then tomorrow he has his big surgery.

He is going to have surgery to try and remove the few tumors that are left on his liver and a small tumor left in his colon. All the other tumors miraculously shrank and disappeared over the past 3 years of chemo.

Originally the doctors told my Dad he would never be able to have an operation because the cancer was so advance. Basically he was only suppose to survive about 1.5 years. So the doctors are amazed how well he is still doing. And if the surgery goes perfectly my Dad will be cancer free!!!

That's amazing! Cancer free, after being told 1.5 years! There is always a chance the cancer could come back but that could be months or years even! Imagine a death sentence basically to freedom again!

That sad part is I'm stuck in Cleveland and can't be with him. So my heart is a little broken. My family is close and I wish I was there. Being so far away is not easy. But I know he is in good hands and going to do wonderfully!

First I get my lungs and now he may be cancer free.... We are kickin some booty in this family! We don't give up and never stop fighting. Its not in our blood.

I love my Dad.

Breathe Easy

Monday, August 6, 2012

Small Hiccup

Hello World!

Well I had my first post transplant hiccup on Saturday night. I was just doing my regular med routine at night, just finished my breathing treatments and did my home spirometry test. Then BAM! My heart rate sky rockets! And when I say say sky rockets I mean, 205 beats per minute!!!

I thought my heart was going to beat out of my chest! I tried some relaxed breathing and nothing worked. So I had to place a call to my docs and of course off to the Emergency Room I went! After about 45minutes my heart rate was still 190ish with no sign of slowing down.

So it was decided that I needed my heart stopped and then started again..... WHAT?!? Stopping my heart, that seems extreme and dangerous! But it was really the only option, nothing else was working.

They were going to use some drug called Adenapryl (not sure that's the actual name). They send it through an IV and it last about 5 seconds and is then flushed out. I was told it feels like when you ride a roller coaster..... WRONGGGG!!!!!!!

It was scary, I'm pretty sure that's what it feels like to die. The room got dark and things slowed and it was hard to have my eyes open. An awful, awful, awful feeling. I didn't like any part of it.

Thankfully it worked so they only had to do it once. I hope my heart never does that again. I haven't had any problems since. The doctors still aren't sure exactly what caused the increase in the first place.

So now that I have had that little scare, I'm hoping for smooth sailing!!

Breathe Easy

Friday, August 3, 2012

It happened!!

Hello World!


All the complaining worked! I got that magical call! it was 4:30pm on Saturday July 21 when Cleveland gave me an initial phone call and the ball started rolling. By 9:30pm I was on a Medical Jet headed to surgery. I arrived in Ohio around 11pm and was off to surgery by midnight. The last time I remember seeing on the clock before I was out cold from sedation was 12:26am Sunday July 22, 2012!!
Ambulance ride to the airport

My medical Jet!

I don't remember much but I hear my surgery went really well. My new lungs took to my body right away and I had no problems. I don't remember the rest of Sunday and most of Monday but by Monday afternoon/evening I was coming off the ventilator!! So by Monday night I was officially breathing on my own.... with the help of some 02. Not a lot but a few liters to just help my new lungs get going.

On Tuesday I had my first 2 chest tubes pulled out. This was a great relief and a great pain all at once. It didn't hurt so much when they pulled the tubes out but when they had to sew the incision holes up that hurt like hell! Lets get real I screamed and cried. It was pretty painful.
Had a little trouble with the IVs

my first "meal" in the ICU

On Wednesday I moved out of the ICU and onto the regular transplant floor. I took my first steps Wednesday too! My legs felt like jelly and cement all at once. They were super wobbly but felt heavy because I hadn't used them in so many days.

Thursday and Friday blur together with getting into a new pill routine. Lots of pills throughout the day. Remembering everything is hard. Caught up on much needed sleep too. The adrenaline and everything starts to wear off and wow I was just hit with a wall of tiredness. Did more walking and really started to stretch these new lungs.
My first attempt at walking!

July 29th was 1 week post transplant. I am feeling GREAT!!! I have more energy now than I have had in years. Things are going so well. Moving really fast. I'm still in a little bit of shock about everything. Its such a whirlwind few weeks. Aug 2nd I got to leave the hospital! I still have 2 chest tubes in but they are coming out soon! I have to stay in the Cleveland area for a while but I'm out of the hospital, living life!!

Bye bye hospital!

Many people have asked me about the donor and all I can say is I don't know anything about them yet. I don't know age, male/female, where they came from, none of that. But I am INCREDIBLY grateful for them. And they will forever hold a place in my heart. They gave themselves so people like me could get to live again. There is no greater gift than the gift of life. I feel very blessed/lucky/fortunate. Words can't explain how I truly feel. And I promise to make the most out of this second chance. Nothing can stop me now!!

Also I've been asked where I'm staying and right now my current residency is...

Jessica Benjamin - Room 309
Cleveland Clinic Intercontinental Suite Hotel
8800 Euclid Avenue
Cleveland, OH 44195

Thanks to EVERYONE for all your kind words and thoughts. I really appreciate them and they mean a lot to me. You were my support pre transplant and I love all the support post transplant!

Breathe Easy