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Thursday, November 19, 2015

Cleveland Checkup

Hello World!

I just got back from Cleveland a few days ago. I head out to Cleveland for a transplant check up every 3-4 months, unless I get sick, then I'll see them sooner. The last 3 times I've been out there my lung function has bee stable, in the 70s. Which is good, but I wish it was better. I once peaked at 96%.... my goal was always break 100. But with 3 bouts of pneumonia over the last 2 years I'm not sure if I'll ever get there. I still hold out hope but I know how lungs work, so we will see what happens.

My weight is good, stable. Its a little strange still to not worry about my weight when I go to appointments. I always used to dread stepping on the scale, and not for the reason most people had. I would try my best and eat so much food and sometimes I'd go to clinic and still lose weight. Its nice to have 1 less thing to worry about.

I got some better news on the baby front. I was glad I got to see my Transplant Doctor and not a fill in this time. He has had patients with CF and Transplant go through pregnancy and come out 100% healthy and the baby be 100% healthy. I respect the statistics but I rely on first hand experience more. I got some good information from him and more information to bring home to Brian. The discussion remains open and Brian and I talk often about what is right for us. There will probably never be a clear cut answer, but we will make the choice together.

Meanwhile, the rest of my days are going well. Nothing too exciting, mostly the same day in and day out. I did however celebrate my Mother's birthday over the weekend by going to a casino. Brian, myself and my brothers all went. She had a great time. And I know she loves spending time with just her kids. I managed to walk away from the casino up money. Which pretty much never happens. I usually lose or just barely break even. So it was nice to walk away with a win.

The holidays are coming up. Its crazy how fast this year has gone by. Definitely feels like a blur. But I'm grateful for everything that's happened this year. 2015 sure has been eventful.

Breathe Easy

Monday, November 2, 2015


Hello World!

How was everyone's Halloween?? Mine was great! I made a short trip down to Rhode Island to visit an old college friend. It was so much fun! I was as Thor.... naturally with my blonde locks. Brian went as Captain America. It was a good time.

On the puppy front, Hemi and Kona have started dog class. This is Kona's 2nd go at class. I tried when she was really little but all the new dogs and new people were just too much for her little brain to handle. So now that she is almost 2, in March, I thought we could try again. Hemi is a natural, much more laid back than Kona. They are both doing great!

Other exciting news, I've joined the Northern New England Cystic Fibrosis Board! How awesome. I'm already an ambassador to the NNE Chapter and speak at a lot of events for them. Its exciting to think of the people I'll get to reach on this platform. I'm ready for this next chapter. 

Well I don't really have any other exciting stuff to tell you. I am headed to Cleveland for a transplant check up in a few weeks.We will be discussing babies then as well. 

Breathe Easy

Thursday, October 29, 2015

The Road is Long and Winding

Hello World!

Well a little medical update.....

 I had a whirlwind of appointments this month. I had CF clinic. It went well. I weigh the most I have ever weighed in my life. Which is bittersweet. I love being healthy but adjusting to seeing myself at a heavier weight is taking some getting used too. My lung function has been stable for months now. It hangs out in the 70s. After 3 times of pneumonia I wonder if it will ever get any higher.

I had a check up with the Kidney doctor, since last winter during one of my pneumonia spells my creatine levels hit a very high 3.5. Now normal levels are less than 1. For the last few months I've been stable at about 1.5-1.7. While those levels are still elevated... they are staying stable. Percent wise it works out to roughly 40% of my kidneys are functioning properly. Now kidney function loss is VERY common with lung transplant patients. The anti-rejection meds you are on, mostly Prograf, really do a number on your kidneys. Its very common that lung transplant patients also need a kidney transplant. So I've already been warned that that is in my future. We just don't know when. With my kidneys being at 40% the only real problem I've had is potassium control. My kidneys don't seem to process any potassium. I manage it mostly by a diet change. I'm a lot more aware of what I'm eating. And when my levels get high, there is medication to take.

On the diabetes front I think I'm actually making progress! I was diagnosis in 2005 with CF related diabetes. Now thats not type 1 or type 2. I am not insulin dependent - never have been. since 2005 we have never figured out a regiment that works. I have tried every kind of insulin thats out there. HOWEVER I have been trying to tackle the blood sugar game recently and all my check ins have been coming back in the normal range. I'm starting to think my pancreas just woke up and started doing its job. I go back to clinic in a month or so, so we will have to see what the professionals say then.

I did have my consultation with an OB-GYN. It went exactly how I expected it to, but not how I was hoping it would. Everything they said to me, I already figured on. My situation is a little complicated. But deep inside I was hoping for a glimmer of hope. I didn't get that. As I thought, its not recommended that I carry a child. Before you get on your soapbox and preach to me about adoption and other options for having children - I KNOW! Its not the point though.

I have always wanted children, life isn't complete without them. One of my main reasons for going through transplant was the possibility of children. Cause at 21/22 I had accepted dying young. I accepted not living a FULL life. I've said it before, at 21 I've already experienced so much,  yes I know its young, but its older than some CFers ever get to see. And in those 21 years I had lived a lot of life. So I made peace with dying young, I by no means was giving up, but I was ready to accept whatever was coming. And I knew without a transplant children were not an option in any way, I was struggling to take care of myself! If I had to pin point 1 reason why I did transplant, it would be that, children.

So I'm not ready to admit defeat.... not that its defeating, more deflating. Its easy to sit here and type with tears rolling down my cheeks about it, but outwardly talking about it with anyone other than Brian just can't happen yet. I'm willing to talk to other Drs -  more than 1 opinion is always a good idea. Then Brian and I can decide whats best for us. Right now, I don't have a clue what that is. Part of me says - Fuck it, What do they know? They don't know me. I came back from a coma? I survived a lung transplant? who do they think I am - But thats angry/anxious Jessi. Calm/level headed Jessi knows its not just about ME anymore. Making crazy choices and taking crazy chances affects way more people now. In a way it puts a lot of weight on my shoulders. But at the same time I have Brian standing next to me ready to shoulder some of this weight.

I know what will be, will be. I like to think I'm a patient person, however I know I'm an instant gratification person. I'm learning. Everyday. Sometimes it would just be nice if life and I were on the same page or even in the same book. And don't get me wrong, I bitch about a lot of stuff but I fully understand how grateful I am to even bee here today having this problem. Its just hard.

Anything worth having, is worth fighting for.

Breathe Easy

Monday, October 5, 2015

I'm Back,

Hello World!

It has been a long time.

I do apologize for falling off the blogging world. But I started this blog to most vent and complain.... Most people need to do that. It works well to just get stuff of your mind. But since my transplant in 2012 life has been a roller coaster.

From love to loss, marriage and death, life is keeping me on my toes. I decided to blog again as I start a new, scary, journey.

I got married in August this year. It was awesome! And I'll dedicate a post to that later on. But now that I'm married we are wanting to start a family. Since I have cystic fibrosis and I've had a double lung transplant, it makes things a little complicated.

I have my first appointment with a high risk OBGYN in a few weeks. I intend to track my progress - good and bad - on here.

So I'll keep this first return post short. Check back soon as I continue this ride.

Thanks for being part of it!

Breathe Easy

Saturday, May 3, 2014

It's been forever.

Hello World!

Oh wow it's been forever! I do apologize. But life has happened and hit me full force this past year. I'm not sure where to begin, so I'm sorry for rambling. I'm going to try and be better about keeping this thing updated. It's a nice vent and release that I miss. Too much stress built in my life lately. I'm not a happy camper about it.

The past year has brought heartbreak, love, laughter, and many tears. It has been a rollercoaster to say the least. I'm hanging in there. Some days are a lot harder than others.

Yesterday, May 2nd, was a hard one. It was my Dads birthday. I miss him a lot. I miss his jokes and sarcastic comments. I miss being able to just pick up the phone and ask him any cooking question and he always had an answer for me. In the past year I haven't even watched much Ellen or The Chew just because they were his favorite shows and I can still hear his laughter in my head. I know as time goes on it will get easier but it's still hard on a lot of days. In thinking him daily.

My older brother had a baby this past December. She is so adorable. And she came at a great time to distract my Mother from all her heartache. I know she hurts but she only shows it occasionally. She is one of the strongest people I know. She definetly has the weight of the world on her shoulders. If I can be half the woman she is I'll be happy with my life.

Our house that burned down to the ground has been rebuilt and my Mother and younger brother moved back in. I'm not living there as I moved out in December to live with my boyfriend Brian. It was a big move but I'm glad I did it. I craved independence after transplant. I have been dependent on others for so long that I need to prove to myself and everyone else that I am capable of taking care of myself.

Health wise, recently it's been a little crazy. I've never had pneumonia before in my life and this winter I got it twice within a few months of each other. It was awful. Thankfully everything has eared up and myungs still look great. No rejection!

I'll be updating the rest of my page in the coming days.

Thanks for all the support and love you all give me. It doesn't go unnoticed. I truly appreciate it.

Breathe Easy

Monday, October 21, 2013

Overdue - Its longs!

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

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