I need a change ...

J

juliemarie

New member
Hello everybody,
I really need to ease my mind and to arrange my thoughts!Around three years ago my FEV dropped to the mid-thirties: From an original around 50% to max. 30 - 35%. That was a huge shock for me. Before that drop I used to lead a normal life. Doing the household was no big effort and in my freetime I loved doing sports like climbing, jogging and similar stuff. Now that my FEV is so much lower, my life is NOT the way it has been before!
I still do the household, but EVERYTHING has become a struggle for me. I can´t be spontaneous anymore because I always have to consider my strenghts. Life has become so much more complicated. For example:
In earlier days it took me one hour to clean the whole apartment without taking a break. Now I am completely done with doing only the hoovering . It is exhausting to carry down the waste and when I go shopping, I always have to keep in mind to buy stuff which doesn´t weigh too much.
Apart from the household, when I decide to go for a walk, I can only walk very slowly, like an old lady. I can´t walk with the same speed as the other people on the street. I also had to stop riding my bike to work, because I always was completely out of breath when I arrived. I am dependent on my car now and when I visit someone of my friends I always need to know if there is a parking possibility outside.
Well and I am only seldom able to go out with my friends in the evenings and at the weekends because of all the therapy I have to do.
I am a strong person and I have tried for almost all of the three years to improve my functions again - with going to the fitness studio , doing therapy and taking care of myself. But in the last weeks I have been losing my motivation. I can´t see the point anymore!!!What is the point of doing the therapy when there is no result, no improvement??
I actually am a very active person and this makes me feel like a bird in a cage! Life is passing me by!!!! When my friends go out and do sports or stuff outside I have to stay at home. My boyfriend is time and again angry at me because I can´t do as much in the household as he is doing and lately we have been arguing about this very often, which also hurts me a lot.Furthermore I am experiencing difficulties at finding a job, because I get out of power very quickly.
I don´t want to live this way anymore and I am afraid that it is getting even worse. The last three weeks I am getting out of breath quicklier. I took part in a photography workshop ( my passion) this weekend and afterwards felt like fainting. And recently I am experiencing a headache after waking up from sleeping.
I don´t know what to do anymore. I want to live my life!!! I need a change. This is not how it should be. But on the other hand I can´t even describe how much afraid I am of actually getting on the transplant list. What if I don´t survive the operation??What is better - a life with a lot of barriers or , in the worst case, no life at all??? When I think about the "worst case" and leaving behind my boyfriend, my sister, friends and family it breaks my heart! Altogether I am really scared.
For information: I have been to the transplant center last year and according to them my health state was "around the border" and I should come again if something worsened.
Well, this is my story... I hope I haven´t written too much, but sometimes it is so hard to arrange everything for yourself.
Thank you for listening!Julie
 
J

juliemarie

New member
Hello everybody,
I really need to ease my mind and to arrange my thoughts!Around three years ago my FEV dropped to the mid-thirties: From an original around 50% to max. 30 - 35%. That was a huge shock for me. Before that drop I used to lead a normal life. Doing the household was no big effort and in my freetime I loved doing sports like climbing, jogging and similar stuff. Now that my FEV is so much lower, my life is NOT the way it has been before!
I still do the household, but EVERYTHING has become a struggle for me. I can´t be spontaneous anymore because I always have to consider my strenghts. Life has become so much more complicated. For example:
In earlier days it took me one hour to clean the whole apartment without taking a break. Now I am completely done with doing only the hoovering . It is exhausting to carry down the waste and when I go shopping, I always have to keep in mind to buy stuff which doesn´t weigh too much.
Apart from the household, when I decide to go for a walk, I can only walk very slowly, like an old lady. I can´t walk with the same speed as the other people on the street. I also had to stop riding my bike to work, because I always was completely out of breath when I arrived. I am dependent on my car now and when I visit someone of my friends I always need to know if there is a parking possibility outside.
Well and I am only seldom able to go out with my friends in the evenings and at the weekends because of all the therapy I have to do.
I am a strong person and I have tried for almost all of the three years to improve my functions again - with going to the fitness studio , doing therapy and taking care of myself. But in the last weeks I have been losing my motivation. I can´t see the point anymore!!!What is the point of doing the therapy when there is no result, no improvement??
I actually am a very active person and this makes me feel like a bird in a cage! Life is passing me by!!!! When my friends go out and do sports or stuff outside I have to stay at home. My boyfriend is time and again angry at me because I can´t do as much in the household as he is doing and lately we have been arguing about this very often, which also hurts me a lot.Furthermore I am experiencing difficulties at finding a job, because I get out of power very quickly.
I don´t want to live this way anymore and I am afraid that it is getting even worse. The last three weeks I am getting out of breath quicklier. I took part in a photography workshop ( my passion) this weekend and afterwards felt like fainting. And recently I am experiencing a headache after waking up from sleeping.
I don´t know what to do anymore. I want to live my life!!! I need a change. This is not how it should be. But on the other hand I can´t even describe how much afraid I am of actually getting on the transplant list. What if I don´t survive the operation??What is better - a life with a lot of barriers or , in the worst case, no life at all??? When I think about the "worst case" and leaving behind my boyfriend, my sister, friends and family it breaks my heart! Altogether I am really scared.
For information: I have been to the transplant center last year and according to them my health state was "around the border" and I should come again if something worsened.
Well, this is my story... I hope I haven´t written too much, but sometimes it is so hard to arrange everything for yourself.
Thank you for listening!Julie
 
T

Tamngia

New member
Julie;
I know exactly what you mean. I ask myself, why bother, there is no point. But living through the moment you are describing will pass. Everyone kept telling me god only gives you what you can handle. My response is BULLoni. I have had more happen to myself, son and husband than most people endure in 3 lifetimes, our rough spot happened in a 3 year span. Everything just seemed to get worse for a longtime. It has been almost a year since our last episode, and am starting now to realize what normal people do. Although still a lil uncomfortable. I have realized we miss our crazy, always emergency life. Kinda forgot how to function without all the hospital visits. Its hard to regroup. I cannot tell you how many times I would pray to have a major storm or natural disaster land right on our house, so I didn't have to deal with it anymore. But it didn't and here we are.
I am a parent of a CF child, wife to a husband that has had 4 major surgeries and a stroke, lost my job. I also have 2 other children. I'm worn out. Sometimes can't even get out of bed, don't want or care too. I hated when people give you that look. They try to say something encouraging, but they just don't know how. I wanted to scream from the top of a building, just stop. But with my lack of luck I would've fallen off the building, got severly hurt and survived. (Not kidding)
But noe our lives are lightening up. I give the bare minimums to my son, and sometimes didn't care if he ate without his enzymes.
 
T

Tamngia

New member
Julie;
I know exactly what you mean. I ask myself, why bother, there is no point. But living through the moment you are describing will pass. Everyone kept telling me god only gives you what you can handle. My response is BULLoni. I have had more happen to myself, son and husband than most people endure in 3 lifetimes, our rough spot happened in a 3 year span. Everything just seemed to get worse for a longtime. It has been almost a year since our last episode, and am starting now to realize what normal people do. Although still a lil uncomfortable. I have realized we miss our crazy, always emergency life. Kinda forgot how to function without all the hospital visits. Its hard to regroup. I cannot tell you how many times I would pray to have a major storm or natural disaster land right on our house, so I didn't have to deal with it anymore. But it didn't and here we are.
I am a parent of a CF child, wife to a husband that has had 4 major surgeries and a stroke, lost my job. I also have 2 other children. I'm worn out. Sometimes can't even get out of bed, don't want or care too. I hated when people give you that look. They try to say something encouraging, but they just don't know how. I wanted to scream from the top of a building, just stop. But with my lack of luck I would've fallen off the building, got severly hurt and survived. (Not kidding)
But noe our lives are lightening up. I give the bare minimums to my son, and sometimes didn't care if he ate without his enzymes.
 
T

Tamngia

New member
But it has gotten better. My son is doing better, my husband is home (which would've never happened if this didn't happen to him), and I still am having moments, but in general am improving emotionally better. I will go through waves of doing all of the therapies and treatments, and somedays hope someone would save me from them. I thought I was alone. The more I spoke about what I was thinking, the better I felt. After all said and done, I realized it was a depression. And still have the I don't care moments, but they are getting farther and fewer inbetween. Most people normally go through depression, I just felt overwhelmed. And had to keep on going. Everyone goes through this at somepoint in their lives, and several times for many too. Do something good for you. Something that will spoil you, and do something for you everyday. (This does not include your medicine, vitamins, therapies, cleaning, etc. ) something would be good for you. Like, get your nails done, on a wim. Frequently. Be a little careless for a while. Its ok. Don't worry about the house for a week. In my case a few months, ask someone to go shopping for you. And don't feel bad about it, the people around you would love to help. (I didn't think so) but they do. And more importantly, talk to prople, it will get better when you do.
I was taught growing up, don't worry about the things you can't control, it takes too much time and energy. Worry about the things you can change. Focus on the little things, you will feel like you have control back.I know I do not have cf myself, but parents feel the same way too. I hope this helps a little. It will be ok.
Tammy Gianneschi
 
T

Tamngia

New member
But it has gotten better. My son is doing better, my husband is home (which would've never happened if this didn't happen to him), and I still am having moments, but in general am improving emotionally better. I will go through waves of doing all of the therapies and treatments, and somedays hope someone would save me from them. I thought I was alone. The more I spoke about what I was thinking, the better I felt. After all said and done, I realized it was a depression. And still have the I don't care moments, but they are getting farther and fewer inbetween. Most people normally go through depression, I just felt overwhelmed. And had to keep on going. Everyone goes through this at somepoint in their lives, and several times for many too. Do something good for you. Something that will spoil you, and do something for you everyday. (This does not include your medicine, vitamins, therapies, cleaning, etc. ) something would be good for you. Like, get your nails done, on a wim. Frequently. Be a little careless for a while. Its ok. Don't worry about the house for a week. In my case a few months, ask someone to go shopping for you. And don't feel bad about it, the people around you would love to help. (I didn't think so) but they do. And more importantly, talk to prople, it will get better when you do.
I was taught growing up, don't worry about the things you can't control, it takes too much time and energy. Worry about the things you can change. Focus on the little things, you will feel like you have control back.I know I do not have cf myself, but parents feel the same way too. I hope this helps a little. It will be ok.
Tammy Gianneschi
 
L

Lex

New member
I looked at it like this: without a TX, I will die. With a TX, there is a chance.

I took that chance and every time I run, play with my son, or whatever else I "used to" do, I thank God my wife MADE me get listed.

I was terrified of a TX---the night before I told my doctor that I wanted to be listed I broke down and cried. I yelled at God for making me sick and I begged to just be healthy.

My wife looked at me dead in the eyes and said, "Listen to yourself! You keep asking God for help and today your doctor told you you need a TX. This is your answer!"

A statement that I will never forgot.
 
L

Lex

New member
I looked at it like this: without a TX, I will die. With a TX, there is a chance.

I took that chance and every time I run, play with my son, or whatever else I "used to" do, I thank God my wife MADE me get listed.

I was terrified of a TX---the night before I told my doctor that I wanted to be listed I broke down and cried. I yelled at God for making me sick and I begged to just be healthy.

My wife looked at me dead in the eyes and said, "Listen to yourself! You keep asking God for help and today your doctor told you you need a TX. This is your answer!"

A statement that I will never forgot.
 
D

Daverog75

New member
Hello Julie,

I am in a similar situation. I caught a cold back in December and My lung dropped from 29% to 24% and now everday is struggle that is why I am going on the transplant list. If you feel that your CF is to the point where you can't function and doing simple things are a struggle than I would recomend you get listed. If your health improves you can always be removed from the list or asked to be put on hold.

I have an identical twin brother who was transplanted just over 3 years ago. Whithin the first 6 months after the surgery he was back to work, back on the golf course, and back in the gym. Don't wait remember in our situation early is better than too late.

Dave 37 w/cf
 
D

Daverog75

New member
Hello Julie,

I am in a similar situation. I caught a cold back in December and My lung dropped from 29% to 24% and now everday is struggle that is why I am going on the transplant list. If you feel that your CF is to the point where you can't function and doing simple things are a struggle than I would recomend you get listed. If your health improves you can always be removed from the list or asked to be put on hold.

I have an identical twin brother who was transplanted just over 3 years ago. Whithin the first 6 months after the surgery he was back to work, back on the golf course, and back in the gym. Don't wait remember in our situation early is better than too late.

Dave 37 w/cf
 
M

MeasureInLove

Guest
Hi Julie.
It really touched me to read your post, because I share those very same feelings! I'm so sorry you're having a hard time too. Just a year ago my lung function was 10% better and I weighed 20 lbs more than I do now. It seems like in the blink of an eye, my lung function plummeted, my weight dropped, I went through severe depression, had to quit work and suddenly was told I needed to be listed. I've been struggling, like you feeling like I'm so limited on what I can do. I feel lazy sleeping most of the day, but just having to grocery shop is an exhausting activity for me.
Also, like you after all the work up to get on the list I questioned if it was the right thing. Obviously, I want a better quality of life but I still have overwhelming fear. What if I'm not as lucky with my recovery? But I try to look at what I may be able to do post transplant. Things I haven't been able to enjoy for years. And honestly, they're very little things. Like just climbing a flight of stairs without having to sit down and calm a coughing fit.
And it is very difficult when others around you don't understand first hand. Unfortunately I had a relationship end because of that. My partner was upset with me when I stopped working and that all I talked about was my health and hospital stuff.
I completely understand your fear and if you ever want to chat, feel free to message me :)

Brigette
 
M

MeasureInLove

Guest
Hi Julie.
It really touched me to read your post, because I share those very same feelings! I'm so sorry you're having a hard time too. Just a year ago my lung function was 10% better and I weighed 20 lbs more than I do now. It seems like in the blink of an eye, my lung function plummeted, my weight dropped, I went through severe depression, had to quit work and suddenly was told I needed to be listed. I've been struggling, like you feeling like I'm so limited on what I can do. I feel lazy sleeping most of the day, but just having to grocery shop is an exhausting activity for me.
Also, like you after all the work up to get on the list I questioned if it was the right thing. Obviously, I want a better quality of life but I still have overwhelming fear. What if I'm not as lucky with my recovery? But I try to look at what I may be able to do post transplant. Things I haven't been able to enjoy for years. And honestly, they're very little things. Like just climbing a flight of stairs without having to sit down and calm a coughing fit.
And it is very difficult when others around you don't understand first hand. Unfortunately I had a relationship end because of that. My partner was upset with me when I stopped working and that all I talked about was my health and hospital stuff.
I completely understand your fear and if you ever want to chat, feel free to message me :)

Brigette
 
T

Tisha

New member
Have you checked for gluten intolerance? It can grow progressively and unadvertently. I have myself dropped from 80% FEV1 in 2009 to 60% in 2011 to 48% in March 2012 and 38% in May 2012 and even the doctor doesn't know why. Started going gluten-free and in five days I had the chance to be tested again, it went up to 40%. Do take a look at the current thread on "gluten-free, diary-free, sugar-free diet". It's very exciting!!
 
T

Tisha

New member
Have you checked for gluten intolerance? It can grow progressively and unadvertently. I have myself dropped from 80% FEV1 in 2009 to 60% in 2011 to 48% in March 2012 and 38% in May 2012 and even the doctor doesn't know why. Started going gluten-free and in five days I had the chance to be tested again, it went up to 40%. Do take a look at the current thread on "gluten-free, diary-free, sugar-free diet". It's very exciting!!
 
P

PinkPigg

New member
<div class="FTQUOTE"><begin quote>The last three weeks I am getting out of breath quicklier. I took part in a photography workshop ( my passion) this weekend and afterwards felt like fainting. And recently I am experiencing a headache after waking up from sleeping. </end quote>
Hey Julie,
Your symptoms make me think of how I feel when my oxygen saturations are low. If you are not on oxygen yet it may be time to get evaluated for it. If you are using O2 maybe you need to increase your flow rate.
Transplant is a scary thing to face. My doctor once told me that it is more important to have quality of life than quantity of life. As I near transplant and things are getting more difficult that advice helps me see transplant as a positive not a negative. Transplant is the hope to hold on to that things can and will get better.
Hold on to hope and keep trying everyday. On days I don't feel like trying, I think of how much I love my husband and I try anyway because of him.
Peace,
Steph
 
C

ContinuallyRefined

New member
How are you doing, Julie? I shared so many of those feelings, thoughts and fears. Ultimately I agreed with what Daverog75 expressed: "If you feel that your CF is to the point where you can't function and doing simple things are a struggle than I would recomend you get listed." Or at least revisit getting evaluated. Let us know how you are physically and mentally!
 
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PatrickM

New member
Hi Julie,
Have you watched the film The Power of Two, it was just released. You can get it on i tunes, or On Demand. I watched it last night. It is the story of twin sisters who have transplants, it is very powerful and well done. It is emotional but when you see their lives post transplant it gives one hope. The link to the trailer and web site is
www.thepoweroftwomovie.com.

Wish you the best.

Tara
 
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