nervous about my health

[Iamqueenofeverything]

I was in the hospital in October because by functions were at 35%. I was in the hospital again in December with a 25%. Got a check up and my functions were at 32% about a week and half ago. I am still tight and short of breath after being on steriod, four treatments daily, and exercise. I am not on oxygen or have a fever. i guess that's a good thing. it's hard to not be negative or alarmed. just want to know if this is a start to think about transplant. talked to my doctor to and he told me that since i am not on oxygen or going to the hospital alot more than he wants to do other things like steriods.
just want to know what your experience was like before you got on the transplant list. what was your breathing like? were you tired all the time? how long did you stay in the hospital and how often did you go to the hospital?

 

[Iamqueenofeverything]

I was in the hospital in October because by functions were at 35%. I was in the hospital again in December with a 25%. Got a check up and my functions were at 32% about a week and half ago. I am still tight and short of breath after being on steriod, four treatments daily, and exercise. I am not on oxygen or have a fever. i guess that's a good thing. it's hard to not be negative or alarmed. just want to know if this is a start to think about transplant. talked to my doctor to and he told me that since i am not on oxygen or going to the hospital alot more than he wants to do other things like steriods.
just want to know what your experience was like before you got on the transplant list. what was your breathing like? were you tired all the time? how long did you stay in the hospital and how often did you go to the hospital?

 

[imported_Momto2]

Iamqueen...I have not had a transplant, but what my doc told me and what I have read says that at around 30% FEV is when to start thinking about it. And that is after recent "aggressive therapy", so I would assume post-hospitalization that does not raise an FEV above 30%.

I'm sorry to hear you're in this position : (
I hope others can chime in with personal experiences that will help more.

 

[imported_Momto2]

Iamqueen...I have not had a transplant, but what my doc told me and what I have read says that at around 30% FEV is when to start thinking about it. And that is after recent "aggressive therapy", so I would assume post-hospitalization that does not raise an FEV above 30%.

I'm sorry to hear you're in this position : (
I hope others can chime in with personal experiences that will help more.

 

[stillkickin]

I'm on the Transplant List and my FEV1 is 12%. I got listed in November 2011 once I required oxygen 24/7 and my PFT's started dropping regardless of medicine. Everyone is so different. When my FEV1 was 20%, I didn't require oxgen...took it slow and was still was going to grocery store, etc. A couple of lung collapses over the summer really knocked the wind out my sails--and lungs! To answer your questions, before I got on the transplant list, life wasn't easy. But with hospital time and IV's..it was manageable. My breathing wasn't great...and I was tired. It was a struggle to maintain life in the same way I had been doing for years. I'd go to the hospital every 3 or 4 months for 14-19 day stays for IV meds. My doctor wasn't pushing me to get worked up for transplant...so I pushed him. He wanted to see if I'd bounce back. I didn't feel I had enough in reserves to wait and see if I was going to bounce back and asked for my chart to be sent to the transplant center. It was the best thing I did. At some point...it truly becomes crystal clear that it's time. There's a knowledge that you just can't keep going like you are. Also, the scoring system (LAS) will place you on The List where you should be in respect to your health. If your numbers and healthare better...you won't be high up on the The List. As your health declines..you move up The List. Itcan help totalk with a Transplant Coordinator. They or your doctor can answer more questions. Also if you Google Lung Transplant there are some great blogs where people give play by play of before, during and after their transplants.
I hope you feel better soon...Life and Light to you!

 

[stillkickin]

I'm on the Transplant List and my FEV1 is 12%. I got listed in November 2011 once I required oxygen 24/7 and my PFT's started dropping regardless of medicine. Everyone is so different. When my FEV1 was 20%, I didn't require oxgen...took it slow and was still was going to grocery store, etc. A couple of lung collapses over the summer really knocked the wind out my sails--and lungs! To answer your questions, before I got on the transplant list, life wasn't easy. But with hospital time and IV's..it was manageable. My breathing wasn't great...and I was tired. It was a struggle to maintain life in the same way I had been doing for years. I'd go to the hospital every 3 or 4 months for 14-19 day stays for IV meds. My doctor wasn't pushing me to get worked up for transplant...so I pushed him. He wanted to see if I'd bounce back. I didn't feel I had enough in reserves to wait and see if I was going to bounce back and asked for my chart to be sent to the transplant center. It was the best thing I did. At some point...it truly becomes crystal clear that it's time. There's a knowledge that you just can't keep going like you are. Also, the scoring system (LAS) will place you on The List where you should be in respect to your health. If your numbers and healthare better...you won't be high up on the The List. As your health declines..you move up The List. Itcan help totalk with a Transplant Coordinator. They or your doctor can answer more questions. Also if you Google Lung Transplant there are some great blogs where people give play by play of before, during and after their transplants.
I hope you feel better soon...Life and Light to you!

 

[beautifulsoul]

Hey there-<br>

<br>I received my TX in March of 2007. <br>

<br>My experience before TX- I wore Nasal oxygen of 3 liters 24/7 for about 2 years up until my transplant. I would get extremely short of breath with daily activities such as walking or climbing stairs. Walking only a few feet away to reach medicine, craft supplies or a movie would result in breathing heavy. Even with oxygen still on, I needed to sit down and rest before it would take me a few minutes to return to normal breathing. I did start becoming more emotionally and physically exhausted over time. A "good" day would consist of family activities such as, going out to dinner, shopping, or seeing a movie. My doctor's encouraged my parents to try to get me out of the house and moving around. OR I would at least do something to keep myself motivated such as, organize & decorate my room (I was 15 at the time) scrapbooking, crafting, surf the internet or read magazines. A "bad" day for me was watching movies/tv all day or sleeping. I just had no energy to do anything on those days. I did home IV's through my picc line for 3 consectutive years. I was lucky to have a stable PFT FEV1 of 19% for at least 2 years before I finally received the call for my new lungs after being on the waiting list for 2 years.<br>

<br>As far as deciding whether or not I wanted a TX and if it would be worth taking all the risks that come along with it- I didn't really have the option of deciding whether I wanted a tranplant or not, considering I was only 13 years old during the evaluation process. The final decision was up to my parents. My parents never brought up the transplant subject until it was finally mentioned by my CF Doctor, stating that since all reliable treatments were no longer effective, it was best to start considering a transplant.<br>

<br> I hope I could answer some of your questions. If you would like further information, feel free to ask<br>

<br>hugs to you<br>
♥ ♥

 

[beautifulsoul]

Hey there-<br>

<br>I received my TX in March of 2007. <br>

<br>My experience before TX- I wore Nasal oxygen of 3 liters 24/7 for about 2 years up until my transplant. I would get extremely short of breath with daily activities such as walking or climbing stairs. Walking only a few feet away to reach medicine, craft supplies or a movie would result in breathing heavy. Even with oxygen still on, I needed to sit down and rest before it would take me a few minutes to return to normal breathing. I did start becoming more emotionally and physically exhausted over time. A "good" day would consist of family activities such as, going out to dinner, shopping, or seeing a movie. My doctor's encouraged my parents to try to get me out of the house and moving around. OR I would at least do something to keep myself motivated such as, organize & decorate my room (I was 15 at the time) scrapbooking, crafting, surf the internet or read magazines. A "bad" day for me was watching movies/tv all day or sleeping. I just had no energy to do anything on those days. I did home IV's through my picc line for 3 consectutive years. I was lucky to have a stable PFT FEV1 of 19% for at least 2 years before I finally received the call for my new lungs after being on the waiting list for 2 years.<br>

<br>As far as deciding whether or not I wanted a TX and if it would be worth taking all the risks that come along with it- I didn't really have the option of deciding whether I wanted a tranplant or not, considering I was only 13 years old during the evaluation process. The final decision was up to my parents. My parents never brought up the transplant subject until it was finally mentioned by my CF Doctor, stating that since all reliable treatments were no longer effective, it was best to start considering a transplant.<br>

<br> I hope I could answer some of your questions. If you would like further information, feel free to ask<br>

<br>hugs to you<br>
♥ ♥

 

[PepperKitty]

In 2007 my FEV1 was 23% & I was on continuous O2. My weight was only 87lbs (I'm 5'6"). The CF doctor suggested a transplant, but I didn't feel my lungs had reached that point. My doctor supported my decision.

I gained weight by using my feeding tube more often (I hate the darn thing) & doing IV's in the hospital instead of home. It's very hard. I'm always tired & just feel bad, but I attribute that to "non-lung" CF issues. I'm admitted into the hospital every 6-9 weeks for 2-3 weeks. The hospital is never scheduled, but my lungs get worse quickly. It's like taking 1 step forward & 2 steps back, but my PFT's have slowly increased. My last hospital stay in January went from FEV!=36% to 52%. I haven't been that high in over 5 years. I fell off my chair! The CF doctor accused me of cheating, he was so surprised.

Wishing you the best!

 

[PepperKitty]

In 2007 my FEV1 was 23% & I was on continuous O2. My weight was only 87lbs (I'm 5'6"). The CF doctor suggested a transplant, but I didn't feel my lungs had reached that point. My doctor supported my decision.

I gained weight by using my feeding tube more often (I hate the darn thing) & doing IV's in the hospital instead of home. It's very hard. I'm always tired & just feel bad, but I attribute that to "non-lung" CF issues. I'm admitted into the hospital every 6-9 weeks for 2-3 weeks. The hospital is never scheduled, but my lungs get worse quickly. It's like taking 1 step forward & 2 steps back, but my PFT's have slowly increased. My last hospital stay in January went from FEV!=36% to 52%. I haven't been that high in over 5 years. I fell off my chair! The CF doctor accused me of cheating, he was so surprised.

Wishing you the best!