Hello World!
Well, its been 5 months since I decided to say anything on here. Most already know why, but for those that don't and only follow my blog, I apologize.
On June 13th my house burned down. The whole thing. I grew up in that house, all 27 years of my life were spent there. The worst part, I lost 3 of my dogs in the fire. My parents, myself, and my boyfriend were home at the time. We woke up to windows exploding from the heat pressure. Less than 2 minutes the entire attic was engulfed in flames. We just barely made it out before the ceiling started to fall. The firefighters found our oldest dog, Shotti, curled up in a sleeping position - she never even woke up. They also found Lucy and Tucker huddled together under my parents bed - I find small comfort in the fact that they were atleast together. They all passed from smoke insulation, thankfully none were burned. Our 2 small dogs are still with us. Max followed my mother right out the house. Ruby got scared and hid under my bed in the basement and firefighters found her for us. My heart hurts for the lose of our home and everything we ever had. They say "its just material things" but that was 30 years of our family's life. That's a hard loss, material things or not. Everyday my heart still hurts for the dogs. I carry Tucker's collar with me everyday. I miss him the most.
I got Tucker as a 9 week old pup. He had been there for me through some of the toughest situations I've had to deal with. He kept depression away, kept me active, made me laugh, gave me something to live for when I felt like there really wasn't much left for me in this world. I know he's just a dog, but he gave me purpose again. I still fight off guilt on a weekly basis that I left him behind in the house. I replay many different scenarios in my head but everything is 20/20 hindsight.
On June 29th My Dad lost his fight against cancer. He fought long and hard for 4 years. While he was taken way too soon, he lasted 3 1/2 years longer than the Doctors thought he would at diagnosis. I'm still not ready to share the whole story about him. I miss him everyday. I will say this, we had that Dad - Peanut connection until the end. When I was little we watched that movie HOOK. There is a part in the movie that one of the lost boys smushes adult Peter's face all around and they yells There you are Peter. I would do that to my dad. Maybe 2 days before he passed, his last day of really being aware of anything, we were sitting and just talking and I looked at him and said There you are Peter. He just laughed and said I was weird. He's my Dad. He got me. I miss that.
Through all this junk I have seen a kindness and generosity in people I've never seen before. Its amazing who comes out of the woodwork to lend a helping hand in a time of tragedy. I am forever grateful to those people. Whether you helped us move into the rental, donated items, or simply brought us coffee the morning of the fire. You will not be forgotten. I will forever be indebted to you. Paying it forward in anyway possible.
As of right now, My mother, myself, boyfriend and younger brother are living in a rental house. Our old house should be rebuilt by February/March. We are making do with where we live now. Still doesn't feel like home to me. Once we move back into our old home, I think I'll get another pup. I could never replace Tucker but I feel a void in my life without a dog.
On a final, unrelated note: If you pray please send one up for my friend Leah. She has Cystic Fibrosis, has had a double lung transplant, face chronic rejection 2 years ago. And now she sits in a hospital bed. She just had a Trach put in and a new feeding tube placed. Anything positive thoughts her way would be appreciated.
Breathe Easy
Live Life then Give Life, Please be an Organ Donor.
Monday, October 21, 2013
Monday, May 13, 2013
Dad Update
Hello World!
Its been a while. Its been really crazy busy. Life has been throwing lots of curve balls my way, I've even been hit by a couple.
My Dad is not doing well. At all. I hate to admit it, but this is the end. We will all be lucky if he is still around in the Fall. For those that don't know, My Dad was diagnosed with stage 4 colorectal cancer in July 2009. Since then he has defied the odd and is still here. The cancer has spread of the years and in the last few months he is declining at a rapid pace. The Cancer spread to his liver, lymph nodes, spine, and other parts of his bones. In the last week or so he became 90% wheel chair bound. He is only allowed to walk a couple feet at a time. He is in so much he barely moves, he's doped up on pain meds 24/7. We are still trying every possible outlet to give him more time.
Life has been really stressful. My Dad's young, only 57. He's never going to get to walk his only daughter down the aisle. He's never going to get to meet his grandchildren. Its just not fair. And I know life's not fair but come on!
Life likes to play cruel games. Giving me new lungs and a second chance at having a 'normal' life, then goes and takes my Dad so we can't enjoy it together. What's that about?? Does life not want me to every be truly happy? I just don't get it. Hasn't our family been through enough? We need a break. We deserve a break.
I hate complaining about stuff because thats not how I was raised. But I've kept too much in and I boil over at the most random times. And I'm never mad or angry at anyone else, mostly my self and the situation. Can't help it. I'm a lot like my mother, we want to fix the things wrong. And the fact that we can't fix my Dad, is so stressful.
It breaks my heart everyday seeing him get worse and worse.
Breathe Easy
Its been a while. Its been really crazy busy. Life has been throwing lots of curve balls my way, I've even been hit by a couple.
My Dad is not doing well. At all. I hate to admit it, but this is the end. We will all be lucky if he is still around in the Fall. For those that don't know, My Dad was diagnosed with stage 4 colorectal cancer in July 2009. Since then he has defied the odd and is still here. The cancer has spread of the years and in the last few months he is declining at a rapid pace. The Cancer spread to his liver, lymph nodes, spine, and other parts of his bones. In the last week or so he became 90% wheel chair bound. He is only allowed to walk a couple feet at a time. He is in so much he barely moves, he's doped up on pain meds 24/7. We are still trying every possible outlet to give him more time.
Life has been really stressful. My Dad's young, only 57. He's never going to get to walk his only daughter down the aisle. He's never going to get to meet his grandchildren. Its just not fair. And I know life's not fair but come on!
Life likes to play cruel games. Giving me new lungs and a second chance at having a 'normal' life, then goes and takes my Dad so we can't enjoy it together. What's that about?? Does life not want me to every be truly happy? I just don't get it. Hasn't our family been through enough? We need a break. We deserve a break.
I hate complaining about stuff because thats not how I was raised. But I've kept too much in and I boil over at the most random times. And I'm never mad or angry at anyone else, mostly my self and the situation. Can't help it. I'm a lot like my mother, we want to fix the things wrong. And the fact that we can't fix my Dad, is so stressful.
It breaks my heart everyday seeing him get worse and worse.
Breathe Easy
Thursday, April 4, 2013
Spring Baby!
Hello World!
Its Spring Timeee!!!! Yayyyyy!!!!
Ok so here's the skinny on the 5K. Its being pushed back. Between where the event is being held and the training to accomplish it... I'm not ready. Now I know I could easily walk that far, I'm basically doing that in May for Great Strides. But I really want to be able to run at least half. So I'm going to push it back, train hard all summer and maybe complete one in the fall or next spring. But be sure, it will happen. I want a medal darn it!
I will be participating in the Cystic Fibrosis Great Strides event. I'm walking in Wolfeboro, New Hampshire. So if you are around that area, sign up, walk with me!! Its outside so even if you have CF we can walk 6ft apart! If you don't live around here and are really interesting in walking, Great Strides is a national event. There is most likely a walk site right near you! You can be an attached team to mine - Breathe Easy or start your own team and create a great name! Check out www.cff.org and click Great Strides to register right online! Its a lot of fun. I encourage you all to join! If you'd like to sponsor me in the walk check out http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=8423&idUser=470928 Any donation is helpful. I'd be grateful if you spread the page around too. Go ahead, whore it out! :)
Um, anyone watching Survivor?! Cause its the greatest ever. If not, get on it, then tweet me about it.
What else is new.... hmm... Well still looking for a job. Won't complain, you are probably sick of that haha.
Oh, Oh, I know..... I'm planning on a nice spring hike to celebrate my 9 months post transplant on April 22nd. Assuming weather permits. Its going to be great. I'm going to hike the same mountain that kicked my butt pre-transplant. I attempted in summer of 2011, about 1 1/2 yrs into waiting for new lungs. I had my O2 tank cranked up to 8L, 2 huge Gatorades to fight dehydration, and my friend whose now a nurse with me. I made it half way... maybe... and then I had to turn around. I was feeling light headed and very tired and my muscles were shaken and twitching in my legs. So needless to say I didn't make it to the top. Well.... its happening. Nothing will stop me now. It'll just be mountain 1 of 2013!
Just a reminder April is National Donate Life Month. You should already be registered, but if not here's the website, takes 5 minutes! www.donatelife.net OR visit www.donatelifevoices.org You get a free t-shirt when you do!! Now that's incentive!! :)
Breathe Easy
Its Spring Timeee!!!! Yayyyyy!!!!
Ok so here's the skinny on the 5K. Its being pushed back. Between where the event is being held and the training to accomplish it... I'm not ready. Now I know I could easily walk that far, I'm basically doing that in May for Great Strides. But I really want to be able to run at least half. So I'm going to push it back, train hard all summer and maybe complete one in the fall or next spring. But be sure, it will happen. I want a medal darn it!
I will be participating in the Cystic Fibrosis Great Strides event. I'm walking in Wolfeboro, New Hampshire. So if you are around that area, sign up, walk with me!! Its outside so even if you have CF we can walk 6ft apart! If you don't live around here and are really interesting in walking, Great Strides is a national event. There is most likely a walk site right near you! You can be an attached team to mine - Breathe Easy or start your own team and create a great name! Check out www.cff.org and click Great Strides to register right online! Its a lot of fun. I encourage you all to join! If you'd like to sponsor me in the walk check out http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=8423&idUser=470928 Any donation is helpful. I'd be grateful if you spread the page around too. Go ahead, whore it out! :)
Um, anyone watching Survivor?! Cause its the greatest ever. If not, get on it, then tweet me about it.
What else is new.... hmm... Well still looking for a job. Won't complain, you are probably sick of that haha.
Oh, Oh, I know..... I'm planning on a nice spring hike to celebrate my 9 months post transplant on April 22nd. Assuming weather permits. Its going to be great. I'm going to hike the same mountain that kicked my butt pre-transplant. I attempted in summer of 2011, about 1 1/2 yrs into waiting for new lungs. I had my O2 tank cranked up to 8L, 2 huge Gatorades to fight dehydration, and my friend whose now a nurse with me. I made it half way... maybe... and then I had to turn around. I was feeling light headed and very tired and my muscles were shaken and twitching in my legs. So needless to say I didn't make it to the top. Well.... its happening. Nothing will stop me now. It'll just be mountain 1 of 2013!
Just a reminder April is National Donate Life Month. You should already be registered, but if not here's the website, takes 5 minutes! www.donatelife.net OR visit www.donatelifevoices.org You get a free t-shirt when you do!! Now that's incentive!! :)
Breathe Easy
Friday, March 15, 2013
Bogus
Hello World!
Ok so if you are part of the Cystic Fibrosis community you most definitely heard about the new policy being implemented by the Cystic Fibrosis Foundation. The new policy states only 1 person with CF will be allowed to attend any indoor event. And the 6ft policy applies to all outdoor events.
Now I don't have a problem with the outdoor policy. But the indoor policy... bullshit! How can you ban people with the disease you are fighting to cure? How can you tell people what they can and can't do? How???
I get it, germ control. Well I'm not going to events to make out with other CFers. I don't got to events to cough or be coughed all over. I go to events to raise money for a cure. To show support to other CFers going through the same shit. Unless you have CF you don't know. We aren't allowed to have support groups, now you want to take away from fundraising events?
Bogus.
Its also discrimination. You can't exclude a group of people for something they can't change. Thats wrong. How dare you take away my right and choice to attend an event? CFers aren't stupid. We are probably more aware of germs, and whos sick around us than a "Normal" person. We have to deal with this everyday.
Masks, gloves, make EVERYONE wash their hands when they enter the event. There are other ways to go about infection control.
You know CFers can get sick from ANYBODY nit just other CFers. They can carry all the same bugs we do, their body just handles it better. So whats next, no events at all?
I am pissed. I don't like being isolated for something I was born with. Its my life. I should get to decide if I want to "risk it" at a CF event, not you. I will NEVER live in a bubble afraid of the world.
We are human beings. NOT a disease.
Breathe Easy
Ok so if you are part of the Cystic Fibrosis community you most definitely heard about the new policy being implemented by the Cystic Fibrosis Foundation. The new policy states only 1 person with CF will be allowed to attend any indoor event. And the 6ft policy applies to all outdoor events.
Now I don't have a problem with the outdoor policy. But the indoor policy... bullshit! How can you ban people with the disease you are fighting to cure? How can you tell people what they can and can't do? How???
I get it, germ control. Well I'm not going to events to make out with other CFers. I don't got to events to cough or be coughed all over. I go to events to raise money for a cure. To show support to other CFers going through the same shit. Unless you have CF you don't know. We aren't allowed to have support groups, now you want to take away from fundraising events?
Bogus.
Its also discrimination. You can't exclude a group of people for something they can't change. Thats wrong. How dare you take away my right and choice to attend an event? CFers aren't stupid. We are probably more aware of germs, and whos sick around us than a "Normal" person. We have to deal with this everyday.
Masks, gloves, make EVERYONE wash their hands when they enter the event. There are other ways to go about infection control.
You know CFers can get sick from ANYBODY nit just other CFers. They can carry all the same bugs we do, their body just handles it better. So whats next, no events at all?
I am pissed. I don't like being isolated for something I was born with. Its my life. I should get to decide if I want to "risk it" at a CF event, not you. I will NEVER live in a bubble afraid of the world.
We are human beings. NOT a disease.
Breathe Easy
Monday, March 11, 2013
Praying to the Knee Gods
Hello World!
Do you know how hard it is to find a job after being out of work 5 years??
I got a job at Petco for a brief moment. But the people there were just not good people. I'm not someone who will just "do a job." I value my time too much. Which most people will say "beggars can't be choosers." Well I'm not begging. So I get to be choosy!
I just want a job I enjoy, and be able to support myself. I know its possible. Its just frustrating. Some one close to me gave me a nice piece of insight recently, she told me that maybe I haven't found the right job yet because the universe (or God if thats your thing) is giving me this time with my Dad. Not working allows me to spend time with him more. Even if that time is just sitting in the same room watching The Chew. I do value that time. And as he gets worse its always in the fore front of my brain. He may be a many of many words, but they are usually wise words.... or hes making fun of you. Either way I like it!
So I'll continue the job hunt, looking for something that fits me... and I don't have to fit the job. Hopefully something comes along soon though! :)
In other news, I'm digging the warm weatherrrr! Spring and summer are my favorite seasons. I can't wait to get out on the boat again! AND ride a jet ski again! I haven't been able to in years because of my O2 tanks... not anymore!!
In my last post I mentioned I signed up for my first 5K - very exciting! Well I have my first running injury!! Can you believe it! Me... with a running injury!! I can't even believe it! So cool.
Well both my knee joints are close to being shot, thats no fun. No running for 2 weeks and I have some regiment I have to follow that involves ice and stretching and all that hoopla. Hopefully they will be better and I can start running again, or this race is REALLY going to kick my newly growing (thats right 102lb these days baby!) booty!
So if everyone could just send a thought to the Knee Gods, I'd appreciate it.
On twitter recently I've learned of a small warrior.... yes warrior. I had to wait 2yrs 2 months and 2 days for my transplant. Riley O'Brien waited 3yrs 3 months 3 weeks 3 days for his transplant. Riley is 4 years old. He receive a new heart and 2 lungs. Like I said WARRIOR. All my good thoughts go to him right now as he recovers. He has a long of recovery ahead but he has support from across the globe. You can follow him at @Smile4Riley or find them on Facebook " Smile 4 Riley."
Now, go out and register to be an organ donor. You never know what might happen to you the next day. Don't let your wishes go unheard. Talk about, write down, register! It doesn't have to be a morbid subject. Its called the Gift of Life for a reason. Please, if you haven't already, register. www.donatelife.net It takes a matter of seconds... 2 minutes tops depending your internet speed.
Breathe Easy
Do you know how hard it is to find a job after being out of work 5 years??
I got a job at Petco for a brief moment. But the people there were just not good people. I'm not someone who will just "do a job." I value my time too much. Which most people will say "beggars can't be choosers." Well I'm not begging. So I get to be choosy!
I just want a job I enjoy, and be able to support myself. I know its possible. Its just frustrating. Some one close to me gave me a nice piece of insight recently, she told me that maybe I haven't found the right job yet because the universe (or God if thats your thing) is giving me this time with my Dad. Not working allows me to spend time with him more. Even if that time is just sitting in the same room watching The Chew. I do value that time. And as he gets worse its always in the fore front of my brain. He may be a many of many words, but they are usually wise words.... or hes making fun of you. Either way I like it!
So I'll continue the job hunt, looking for something that fits me... and I don't have to fit the job. Hopefully something comes along soon though! :)
In other news, I'm digging the warm weatherrrr! Spring and summer are my favorite seasons. I can't wait to get out on the boat again! AND ride a jet ski again! I haven't been able to in years because of my O2 tanks... not anymore!!
In my last post I mentioned I signed up for my first 5K - very exciting! Well I have my first running injury!! Can you believe it! Me... with a running injury!! I can't even believe it! So cool.
Well both my knee joints are close to being shot, thats no fun. No running for 2 weeks and I have some regiment I have to follow that involves ice and stretching and all that hoopla. Hopefully they will be better and I can start running again, or this race is REALLY going to kick my newly growing (thats right 102lb these days baby!) booty!
So if everyone could just send a thought to the Knee Gods, I'd appreciate it.
On twitter recently I've learned of a small warrior.... yes warrior. I had to wait 2yrs 2 months and 2 days for my transplant. Riley O'Brien waited 3yrs 3 months 3 weeks 3 days for his transplant. Riley is 4 years old. He receive a new heart and 2 lungs. Like I said WARRIOR. All my good thoughts go to him right now as he recovers. He has a long of recovery ahead but he has support from across the globe. You can follow him at @Smile4Riley or find them on Facebook " Smile 4 Riley."
Now, go out and register to be an organ donor. You never know what might happen to you the next day. Don't let your wishes go unheard. Talk about, write down, register! It doesn't have to be a morbid subject. Its called the Gift of Life for a reason. Please, if you haven't already, register. www.donatelife.net It takes a matter of seconds... 2 minutes tops depending your internet speed.
Breathe Easy
Saturday, March 2, 2013
Been A Little Bit
Hello World!
I bet you thought I forgot about you..... NOPE!
Just been been busying. February just flew by. Turned out to be an up and down month for me. I'm not working anymore, but the job search. Still hopeful I find something perfect. I liked working at Petco, but the people there just weren't for me. Not sure what I want to be when I grow up so I'm still searching. It would be great to find a job where I could actually use my college degree. Its not easy putting together a resume when I haven't worked in so long. Right after I graduated in May 2009 I ended up in a coma in Sept.... so needless so say there is no experience here haha. I could change a dressing, distribute meds oral and IV, show you have to shower/bath without getting IVs wet, administer feeding, set up IV or Feed Tube pump, change a mickey button, use a bipap machine, count calories, eat til I puke then eat again because I just wasted all those calories, handle a coughing attack which leads to puking while driving, But those aren't really skills people want on an application. So I feel a little stuck. I just need one person to take a chance on me. I'm a good worker, its in my blood!
I also celebrated my 27th birthday this month! So awesome. One of my best friends happen to have a birthday 2 days after mines. So we did a joint birthday bash. It was fun. Lots of laughs, yelling, game playing, and just a smidge bit of drinking. It was great. One of my other best friends took me out to dinner on my birthday too. That was fun, got to meet a lot of new people and eat CHINESE FOOD!
So thankful to celebrate my 27th birthday. In Sept 2009, the doctors weren't sure I was going to make it out of that coma, so Feb 2010 was my 24th birthday, I was so so so thankful for that day and since then my birthday wish was always to just make it to the next one, just give me one more year. Since I got my transplant in July 2012, I'm free to wish a little bigger this year. For that reason alone I'm forever in debt to my donor. They saved my life.
Oh hey, I signed up for my first 5K ever.
Yes, me, I really did it. A good friend named Gabe, who also happens to have CF and also happens to be less than a yr post transplant and bulletproof, asked me if I would do this with him. I was really not sure at first. I have NEVER been a runner. I usually give people with "run for fun" grief. So I mentioned to a few people I was thinking about doing this and everyone one of them said I was nuts and no way could I do it.... so I committed that day. Don't ever tell me something is crazy and I can't do it. Do you just meet me? Read MY story. Don't doubt me. Ever. I can and will complete this race. Will I be able to run the whole thing, probably not. But it won't stop me from trying. I'm a pretty stubborn person when it comes to these things. I don't like to quit, take the easy, or worse not ever try. That's just not me and never has been.
Ever pre-transplant when I had an oxygen tank to lug around, tube feeds to do, and a wheelchair I went boating, attempted hiking, little bit of swimming - all that junk wasn't going to stop me then. Nothing can stop me now.
Live it up, Laugh at yourself, Be kind to others, and Dream the impossible.
Oh and happy 30th birthday to my brother Jason!!! You're my favorite red-head!
I bet you thought I forgot about you..... NOPE!
Just been been busying. February just flew by. Turned out to be an up and down month for me. I'm not working anymore, but the job search. Still hopeful I find something perfect. I liked working at Petco, but the people there just weren't for me. Not sure what I want to be when I grow up so I'm still searching. It would be great to find a job where I could actually use my college degree. Its not easy putting together a resume when I haven't worked in so long. Right after I graduated in May 2009 I ended up in a coma in Sept.... so needless so say there is no experience here haha. I could change a dressing, distribute meds oral and IV, show you have to shower/bath without getting IVs wet, administer feeding, set up IV or Feed Tube pump, change a mickey button, use a bipap machine, count calories, eat til I puke then eat again because I just wasted all those calories, handle a coughing attack which leads to puking while driving, But those aren't really skills people want on an application. So I feel a little stuck. I just need one person to take a chance on me. I'm a good worker, its in my blood!
I also celebrated my 27th birthday this month! So awesome. One of my best friends happen to have a birthday 2 days after mines. So we did a joint birthday bash. It was fun. Lots of laughs, yelling, game playing, and just a smidge bit of drinking. It was great. One of my other best friends took me out to dinner on my birthday too. That was fun, got to meet a lot of new people and eat CHINESE FOOD!
So thankful to celebrate my 27th birthday. In Sept 2009, the doctors weren't sure I was going to make it out of that coma, so Feb 2010 was my 24th birthday, I was so so so thankful for that day and since then my birthday wish was always to just make it to the next one, just give me one more year. Since I got my transplant in July 2012, I'm free to wish a little bigger this year. For that reason alone I'm forever in debt to my donor. They saved my life.
Birthday Shots!
My Dream Team!
Oh hey, I signed up for my first 5K ever.
Yes, me, I really did it. A good friend named Gabe, who also happens to have CF and also happens to be less than a yr post transplant and bulletproof, asked me if I would do this with him. I was really not sure at first. I have NEVER been a runner. I usually give people with "run for fun" grief. So I mentioned to a few people I was thinking about doing this and everyone one of them said I was nuts and no way could I do it.... so I committed that day. Don't ever tell me something is crazy and I can't do it. Do you just meet me? Read MY story. Don't doubt me. Ever. I can and will complete this race. Will I be able to run the whole thing, probably not. But it won't stop me from trying. I'm a pretty stubborn person when it comes to these things. I don't like to quit, take the easy, or worse not ever try. That's just not me and never has been.
Ever pre-transplant when I had an oxygen tank to lug around, tube feeds to do, and a wheelchair I went boating, attempted hiking, little bit of swimming - all that junk wasn't going to stop me then. Nothing can stop me now.
Live it up, Laugh at yourself, Be kind to others, and Dream the impossible.
Oh and happy 30th birthday to my brother Jason!!! You're my favorite red-head!
And check out Gabe's Blog, also called Breathe Easy! https://gwpoland.wordpress.com/
Breathe Easy
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
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
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
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