Hello World!
I know its been a while since I lasted posted. Part of it is because I'm out and about a lot and then I also don't really know what to say.But over the last few weeks I've had a roller coaster time.
I made my first Cystic Fibrosis speech or talk. My area has an annual CF Family and Friends night, with dinner and speakers, and we go over what was discuss at the big CF Conference and many of the vendors that make CF products come out to show case new things and give samples (Free Enzymes!!). This year I was asked to share my "story" about transplant. I was super nervous, I don't speak in front of people. But I sucked it up and it turned out really well. I was much better at the answering of questions after then the actual speech/talk. I would even consider doing it again.
I've been on the job hunt. As many people know thats not easy these days. I also have the added fact that my resume says I haven't worked since 2008. Which is true but due to my CF. And you have to becareful what you reveal on applications, yada-yada-yada. It just sucks.
I did however land an "as-needed" job as a Pet Sitter. So thats a step in the right direction. Still looking for something with longevity and I don't know, benefits!, haha. But I believe it will come. And if not I'll live off my parents forever, Hi Mom and Dad :).
A giant bummer hit me yesterday. I have always wanted children. I've known since I was 15 years old kids were in my future. I was too sick pretransplant to EVER care for a child, could barely care for myself. So a big motivator throughout my waiting and recovery was the idea I would be able to have children. Some CF woman can't carry babies because they are just small and sick. It can be done, but its risky. So already knew I wouldn't carry a child myself, but I wanted to harvest my eggs and use a surrogate. I talked to my transplant team about it and it was decided the shots you have to take to boost your ovaries are too risky for me. They don't mix well with some of my mandatory medications. There are also some serious side effects that could occur, from the simple nausea to liver, kidney, or respiratory failure. So thats awesome, get new lungs then get respiratory failure.
All the wind in my sail was taken away. Having a baby was my driving force to get better and stay better! And I know there are other options. But having that option taken from me? Its heartbreaking. Of course I wanted a little mini-me, a little one that shared my DNA. I think most Moms and Dads want that. While I feel deflated at the moment, it isn't going to stop me from having that family I want. I can't dwell on things I can't change. I just need to switch from Plan A to Plan B... and I go to Plan C or D if I have too. But I will make it work. My life can't be complete without it, so its not an option to "fail."
Ontop of everything, tomorrow, November 22nd is not only Thanksgiving BUUUTT my 4 month Transplant Anniversary!! What a great day for it to fall on. I'm so thankful for my family and friends. But I'm so, so. so grateful to my donor. I can't put into words just how thankful I am to my donor. I don't know anything about them (yet), but I know they made the most powerful decision they could. They decided to be an organ donor. They had the kindness in their heart to pass on the gift of life once they were gone. They will ALWAYS be apart of me. Not just physically but in my heart. Their gift to me has made me a better person. I take them with me everyday, with every breathe I take or task I accomplish that wasn't possible before I owe to them. They saved my life. They gave me a second chance to experience the world. Because of that I feel its my duty to live life to the fullest. To laugh 10x more then cry. To try and try and try and never let something stop me because its hard. My donor and their amazing family that respected their wishes are forever part of my family now. Even if I never get to meet or speak to them in person, they have a very safe place in my heart.
"In
everyone's life, at some time, our inner fire goes out. It is then burst into
flame by an encounter with another human being. We should all be thankful
for those people who rekindle the inner spirit.” -AS
Breathe Easy
Live Life then Give Life, Please be an Organ Donor.
Wednesday, November 21, 2012
Tuesday, October 9, 2012
Learning Patience
Hey World!
So I'm quickly learning patience in life.
I'm feeling great these days. Just plain awesome. But because I'm feeling so great I want to do alllllll these things, that I just can't yet. I want to work - not yet, I want to live on my own - not yet, but hopefully changing soon, deal is still up in the air -And I really want more than anything else to have a baby!!!! That's definitely not happening right away.
And that one sucks the most. My whole motivation behind transplant was to be able to have kids. I've know since I was 15/16 that I wanted kids. 25 was my goal age to reach then go forward with things - Yes I can do this on my own, no guy needed! :) - But that year came and went, now 26 and I'm almost 27. What is happening!!?!? I know, I know, some of you will say "oh but your so young, you have time." Not the point. I know what I want and I'm an instant gratification person, so obviously I want it now. I'm sick of waiting!!!
I can't start working in January. And hopefully in a few weeks I'll find out about the living situation, I'll either be on my own or in my parents basement still. Soooo if those things happen HOPEFULLY by this time next year I'll be on my baby mission!
So things are moving, just slower than I want. Patience. Learning to love it - or atleast accept it.
Breathe Easy
So I'm quickly learning patience in life.
I'm feeling great these days. Just plain awesome. But because I'm feeling so great I want to do alllllll these things, that I just can't yet. I want to work - not yet, I want to live on my own - not yet, but hopefully changing soon, deal is still up in the air -And I really want more than anything else to have a baby!!!! That's definitely not happening right away.
And that one sucks the most. My whole motivation behind transplant was to be able to have kids. I've know since I was 15/16 that I wanted kids. 25 was my goal age to reach then go forward with things - Yes I can do this on my own, no guy needed! :) - But that year came and went, now 26 and I'm almost 27. What is happening!!?!? I know, I know, some of you will say "oh but your so young, you have time." Not the point. I know what I want and I'm an instant gratification person, so obviously I want it now. I'm sick of waiting!!!
I can't start working in January. And hopefully in a few weeks I'll find out about the living situation, I'll either be on my own or in my parents basement still. Soooo if those things happen HOPEFULLY by this time next year I'll be on my baby mission!
So things are moving, just slower than I want. Patience. Learning to love it - or atleast accept it.
Breathe Easy
Wednesday, October 3, 2012
BooYah
Hello World!
Well people I just got back from Cleveland. I completed my 3rd bronchoscopy! Don't have the results back but I'm thinking 'no rejection!!' Also did some PFTs and my numbers are 75%. BooYah!! Weight is staying stable soooo I GET TO HAVE MY FEEDING TUBE OUT!!! Double BooYah!!! So overall great visit. No complaints or problems in the Transplant world!
This weekend I'll be venturing into the world and attending my first Oktoberfest. Should be a good time with my friends. It nice to be able to make plans for the future and not be terrified I'll be in the hospital when the date rolls around. Its the simple things.
Oh man, I got asked to speak at my local CF Family and Friends night. Should be interesting since I'm not a great public speaker. Then there is also do I invite my friends to make me more nervous or not, hmmmm. We'll see, its not until November so I got a little time.
On a random note today, my Mother decided at breakfast today to turn to me and say "Ya know, 3 years ago you were in a coma." Well, thanks Ma. Haha. I am very grateful to be here today. No ifs, ands, or buts about it!
"Some days are for learning the lessons, and some days are for counting the blessings. Be grateful for both. Things change, but the sun always rises the next day." -SG
Breathe Easy
Well people I just got back from Cleveland. I completed my 3rd bronchoscopy! Don't have the results back but I'm thinking 'no rejection!!' Also did some PFTs and my numbers are 75%. BooYah!! Weight is staying stable soooo I GET TO HAVE MY FEEDING TUBE OUT!!! Double BooYah!!! So overall great visit. No complaints or problems in the Transplant world!
This weekend I'll be venturing into the world and attending my first Oktoberfest. Should be a good time with my friends. It nice to be able to make plans for the future and not be terrified I'll be in the hospital when the date rolls around. Its the simple things.
Oh man, I got asked to speak at my local CF Family and Friends night. Should be interesting since I'm not a great public speaker. Then there is also do I invite my friends to make me more nervous or not, hmmmm. We'll see, its not until November so I got a little time.
On a random note today, my Mother decided at breakfast today to turn to me and say "Ya know, 3 years ago you were in a coma." Well, thanks Ma. Haha. I am very grateful to be here today. No ifs, ands, or buts about it!
"Some days are for learning the lessons, and some days are for counting the blessings. Be grateful for both. Things change, but the sun always rises the next day." -SG
Breathe Easy
Tuesday, September 25, 2012
Home!
Hello World!
Well I did it folks! I'm hommeee!!! 603 baby! Woo Woo!
So glad to be home, can't even express it into words. Never thought I'd miss this little boring town. Don't get me wrong, Cleveland is a wonderful place. Nice people, great hospital, great weather. The only thing I didn't like was the cigarette butts all over the ground! If you are going to smoke, which is disgusting in itself, could you at least throw your butts in the trash! Gosh, pull it together tobacco junkies! Seeing my dog has been the highlight! Well seeing the whole pack really. And my family. And my friends. So really just everything haha.
Now starts the journey on a new path. One that is hopefully a little easier.
Its taken me a while to write on here cause I really didn't know what to say, I still don't! Ha. So for the past few weeks I've just been rejoining the world of the living. I've been visiting the extended family and friends. Starting to take up cooking. Just doing everyday things I haven't been able to do in a long time. So grateful.
I'm going to Cleveland this coming week. I have my 3rd Broncoscope on Oct 1st. I'm expecting and hoping it goes well like the first 2 and all results come back as no rejection. I got asked today to speak at our annual CF Family night. I'm so nervous. Public Speaking isn't my forte. I had to take it twice in college hahaha. So it should be interesting.
Otherwise nothing that exciting to report. Life is pleasantly boring at the moment. No complaints for me!
Breathe Easy
Well I did it folks! I'm hommeee!!! 603 baby! Woo Woo!
So glad to be home, can't even express it into words. Never thought I'd miss this little boring town. Don't get me wrong, Cleveland is a wonderful place. Nice people, great hospital, great weather. The only thing I didn't like was the cigarette butts all over the ground! If you are going to smoke, which is disgusting in itself, could you at least throw your butts in the trash! Gosh, pull it together tobacco junkies! Seeing my dog has been the highlight! Well seeing the whole pack really. And my family. And my friends. So really just everything haha.
Now starts the journey on a new path. One that is hopefully a little easier.
Its taken me a while to write on here cause I really didn't know what to say, I still don't! Ha. So for the past few weeks I've just been rejoining the world of the living. I've been visiting the extended family and friends. Starting to take up cooking. Just doing everyday things I haven't been able to do in a long time. So grateful.
I'm going to Cleveland this coming week. I have my 3rd Broncoscope on Oct 1st. I'm expecting and hoping it goes well like the first 2 and all results come back as no rejection. I got asked today to speak at our annual CF Family night. I'm so nervous. Public Speaking isn't my forte. I had to take it twice in college hahaha. So it should be interesting.
Otherwise nothing that exciting to report. Life is pleasantly boring at the moment. No complaints for me!
Breathe Easy
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
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
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
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
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