Hello World!
Well things aren't wonderful.
I'm a stubborn person. Have been my whole life. I'm opinionated and I know what I want. That can make me a difficult patient. Don't get me wrong I have an EXCELLENT relationship with my team of doctors. So great in fact I have personal cell phones I can call if I ever need anything. With that being said we've had our go arounds with what is "right" for me. Everyone is different.
A few weeks ago I went out to Cleveland for a transplant follow up. Things did not go the way I hoped. My lung function was way down. 15% from my baseline actually. Immediate red flag. My blood work also showed signs of new "bugs." These things called Donor Specific Antibodies (DSA) popped up. These are not good. It means my donated lungs are creating antibodies to fight my natural cells - basically rejection. SO I have to go back to Cleveland on the 9th of November for another lung function test, more blood work, chest x-ray, and a bronchoscope. During the bronch they will biopsy my lungs and be able to tell how serious the rejection is. Acute rejection is the "good" kind. Chronic rejection is harder to treat. But i won't really know anymore until then. In the mean time I'm on high dose prednisone, which is a steroid. Prednisone makes me hungry all the time, along with keeping me awake at night cause my brain wont shut off and makes me moody. I'm very grateful for Brian for dealing with me the last few weeks. Its been crazy.
On top of that stuff, the past few days have been rough. Ive been more short of breathe and extremely tired. So off to the doctors I went. Well thanks to the high dose prednisone my sugar levels have been sky high - which we have decided is the root of this latest issues. They also made do a "walk test," which is where they hook you up the 02 monitor and make you walk around to see how your 02 levels do. We discovered doing this that my 02 level drop down when I'm exerting myself. SOOOOOOOOOO I been banished from working until I go see Cleveland and get this rejection under control.
Most people would love a letter from the doctor saying they can miss work for a little bit. But Ive already put in that time - years for that matter. I want to work. Don't get me wrong there are days i wake up and grumble about having to go to work BUT I'm glad I can get up and go work. It gives me some purpose in my day. So it drives me crazy that I'm not allowed to go to work. I HATE being told that. I'm all about proving you wrong. Don't put limits on my life. I'll break them every time.
So reluctantly I'll listen to the Drs and stay home for a few days and soak in my puppy therapy. But i cant wait to get back out to Cleveland and figure this mess out. I'm ready to feel good again and get this back on track. Tired of being sick and tired. I'll update again as soon as I know more.
Breathe Easy
Live Life then Give Life, Please be an Organ Donor.
Friday, November 4, 2016
Sunday, September 25, 2016
Update
Hello World!!
Well its been a while since I've been on here. Life gets crazy sometimes. I'm going to try and post more regularly... I know I know I've said that before. But really I will!
One of the biggest changes that has happened in my life is Brian and I bought a house!!! So exciting. I never thought in a million years I would own my own home. Its such a luxury in life. We are very proud and excited.
Personally, we celebrate 1 year of marriage back in August. That was awesome as well. We made it through year 1. It definitely had its bumps along the way but we stuck together and made it through.
Sometimes, even small things, can get so blown out of proportion and ruin things. Its important in marriage - and life in general - to try and not let the little things tear you apart. You can disagree, thats normal. But at the end of the day we still said I love you - and meant it. Marriage is a lot of work. Its not for the faint of heart.
All 3 of the dogs are doing great! They are loving the new space they have to run. Kona and Hemi are gearing up to finally start agility. Its exciting. I think they are both going to love it!
As for news on the baby front - its still a work in progress. After visiting several doctors and specialist and hearing what their opinions were Brian and I decided there were a few things we needed to fix personally - together - before we bring children into this world. This past year we have grown a lot as a couple and set up some foundations in the family tree. There is a lot to consider and we aren't taking any chances.
Overall my health is doing well. I managed to escape last winter with no pneumonia. I'm hoping for the same thing!
Well a short, quick, to the point update for now. Since I don't have much to rant about health wise you just might start seeing my opinion on random things i feel are important to share.
Much Love world - We need it these days.
Breathe Easy
Well its been a while since I've been on here. Life gets crazy sometimes. I'm going to try and post more regularly... I know I know I've said that before. But really I will!
One of the biggest changes that has happened in my life is Brian and I bought a house!!! So exciting. I never thought in a million years I would own my own home. Its such a luxury in life. We are very proud and excited.
Personally, we celebrate 1 year of marriage back in August. That was awesome as well. We made it through year 1. It definitely had its bumps along the way but we stuck together and made it through.
Sometimes, even small things, can get so blown out of proportion and ruin things. Its important in marriage - and life in general - to try and not let the little things tear you apart. You can disagree, thats normal. But at the end of the day we still said I love you - and meant it. Marriage is a lot of work. Its not for the faint of heart.
All 3 of the dogs are doing great! They are loving the new space they have to run. Kona and Hemi are gearing up to finally start agility. Its exciting. I think they are both going to love it!
As for news on the baby front - its still a work in progress. After visiting several doctors and specialist and hearing what their opinions were Brian and I decided there were a few things we needed to fix personally - together - before we bring children into this world. This past year we have grown a lot as a couple and set up some foundations in the family tree. There is a lot to consider and we aren't taking any chances.
Overall my health is doing well. I managed to escape last winter with no pneumonia. I'm hoping for the same thing!
Well a short, quick, to the point update for now. Since I don't have much to rant about health wise you just might start seeing my opinion on random things i feel are important to share.
Much Love world - We need it these days.
Breathe Easy
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
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
Halloween
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.
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
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
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
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
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