Newly Afraid

[LAggie1972]

I'm a 33 year old adult with CF. I'm relatively healthy...no port, clear lungs, PFTs FEV1 around 46% (down from 50%) just over a year ago. I feel great except for all of the comments doctor's make candidly or what I read on the forums. I'm terrified every time I go to the doctor that it will be time for oxygen, hospitalization, transplant, and death. Last time I went to my CF doc, she said that she's not overly concerned, but that she's a perfectionist and just wants to see if we can get my numbers back up. I recently began seeing an allergist who's bedside manner is for not. He knows nothing about CF and when I took my baseline PFT he said, and I quote, "WOW these are low, I'm surprised you're not gasping for air". Not exactly a confidence booster. I have horrible anxiety attacks as my quarterly CF appointments near, and just get more and more fearful. What's worse is that recently I've been thinking about how I'll take care of myself when my parents are gone. I'm not married and just get scared that I'll parish without any help. Anyone out there feel the same way or have any words of encouragement? I've heard enough alarmist reality for now...and can come up with it enough myself.

 

[JazzysMom]

iIf their bedside manner sucks then the expertise isnt always helpful. Dont take to heart what is told to you. Consider it information that might be of use to you. I have learned to try not & panic. Its easier said than done when you are going thru a rough time, but its true. Earlier this year I was in very poor health with no idea why or how to fix it. The usual ways were barely helping. With time, patience and work it has improved. I dont want to give you a bunch of negative statistics or the reality of CF because you are more than aware of it. I do want to say that as you deal with any obstacles you might feel like its the beginning of the end such as O2, home iv, ports etc. I did. I felt like the next step was my grave. Once I got "use" to that change (O2 at home being the biggest so far) it was just another day with CF. I believe my daughter gets more anxiety over my checkups than I do. Its natural to worry/wonder what might show up that you didnt feel coming etc. That is what the tests & checkups are for. To stay on top of things. Not to nail you with bad informatoin all the time. Think of it like taking a car for a tune up. You dont want to wait until there is an actual problem, but sometimes a tune up a/k/a checkup will catch things just as its starting so you dont have a blown engine. You might say to yourself at the time.....Damn I should have never taken the car in & it would be fine and save myself some money. Well fine for how long. The fact that you took it for a tune up didnt cause the problem it prevented it from becoming a bigger problem. As far as you surviving when your parents arent around anymore. Many, many CFers do it. Its a matter of self assurance and education about the cost of things & availability of services to help. Help with heat, food or meds. I am not sure how encouraging this was, but I personally like my scenario about the car.....LOL!

 

[Diane]

I can certainly understand your feeling the way you do. I also sometimes feel the same way, especially when i am sick and on iv's. When i first got b.cepacia i started to realize the severity of the situation and was preparing to die. I was sure "this is it, i'm doomed". But after a few months i got out of that depression, and starting trying to live again. I get nervous when i go to my doctor appts. because i am always afraid to see my fev1. Like you, i am at 46%, and would love to see it higher. It's frustrating that i cant seem to get it higher, but the good news is....it isn't lower ( thank God).
I always tell myself, to do the best i can and there isnt much more i can do. I always believed since i was diagnosed with b.cepacia, that if it is your time to die, then fight it all you want.... but you will still die. No matter what , everybody, even the healthiest person on the face of the earth ,is going to die, its all just a matter of when. The difference is.. they don't worry about it as much ( or at all) like those of us with health issues do. I think we tend to get over competitive with ourselves when it comes to our pft's. I try to remind myself that #'s arent important, whats important is how i feel. It's hard to live by that rule when we see our #'s going down. Then again some people with high #'s feel like crap all the time, so i guess theres some logic to it. I live on my own, and also worry about who will be there for me when i am sick and dieing....That is a scary thought i think even for a healthy person. Am i helping here at all ? or just rambling............lol I hope you got something out of this.....................

 

[JennifersHope]

Hi,

I am 33 years old as well.. I have good clear lungs except when I am sick as well.... I know it can be overwhelming and scarry.. I have had some of the same thoughts as you have had.. like who is going to take care of me when my parents die... or when they arn't around anymore..When I am sick I am so dependant on them to do everything for me.... but you know what..something will work out.. it always has or I wouldn't have made it this far.

I know in the future I am going to need surgery on my hips, eyes, and uterus but I take it one day at a time.. ( or I try to anyway).. I have made it this far in life by Gods grace... and I just have to believe that I will have my needs met when the time comes and I have to face each thing.... It is scarry to think about it.. I know.. but I chose to believe that I will be okay..I didn't always have my natural parents support.. but I have ppl in my life that are more like a parent to me then I could ever have asked... so it worked out...

Throughout my life, when ever I really needed something, be it a person to love me, take care of me, or what ever it is, I have always been blessed with what I need...not always what I wanted but always what I needed... I do believe in God.. so I try to rely on my faith in knowing God has taken care of me this far... He will take care of me to the end... He will just have to provide someone else for me when the time comes.

As far as what some doctors say.. YIKES... I have heard them say some real mean and insensitive things... I think sometimes they get so desensitized to the fact that they are dealing with human beings... that they just come across so rude.... I understand about not wanting to go to clinic.. I am the same way.. I am due to go on Tuesday and I am dreading it....I don't want one more test to be ordered on me.. I don't want to participate in any clinical trials... and I don't want him to touch me.... LOL..

Anyway.. I hope you find the support you are looking for here...

Keep reading the posts and post any questions you have.. It helps a lot.

Jennifer

 

[anonymous]

I can relate. I know that when we get over the age of 30 or so that some of us start to think we're living on "borrored time" because we are close to the 'life expectancy' that somebody that doesn't even have CF has determined to be correct.
I also get some anxiety when I go to the doctor for check-ups and because of the shortness of breath that the anxiety causes, I often wonder if my PFT's are even accurate. I, too have a good cry every time something new is added to my regimen and then after a good night's sleep I just pull myself up by the boot straps and continue on. There have been many times that my doctor has tried to get me to try new things & I resisted only to find that they really did help to make my life easier when I finally decided to try them. I also know that my worrying isn't going to make things any better, if anything it could be making it worse??
If it helps, most transplant centers won't even test you to see if you're a viable candidate until you're at 30% or below so try to take the very best care of yourself now so that that time will be very far down the road.
Do you happen to get THE ROUNDTABLE magazine written by CF Adults for CF Adults? That has been an inspiration to me just knowing that there are many people w/CF having somewhat normal lives and I enjoy reading articles that I can relate to. I even saw a 65th birthday listed in the latest issue!
Hang in there and you're not alone<img src="i/expressions/face-icon-small-smile.gif" border="0">
Hope

 

[LAggie1972]

Thank you all so much. It really helps to get positive feedback and encouragement, and to know that I'm not alone. We all see the dreaded statistics and numbers too often, and are all too aware of our mortality. I'm trying my hardest not to borrow trouble and to worry less. Thanks much.

Lisa

 

[lovingBenandCambree]

I had a doc once that told me don't go so much by the number but by how you feel. If you feel good don't let anyone tell you that you shouldn't. It has really helped me to not have so much anxiety about that. I have had to be on oxygen which was difficult trying to chase my daughter around but not horrible. I still use it at night and when I exercise and its just fine. My PFTs FEV1 is 52% up from 43 which is awesome but I live at a very high altitude so I require more oxygen because of that. I love going on vacation to sea level and breathing much more freely. As for the Doc that stinks is there anyway you can get a different allergist? I know that having a bad bedside manner makes things seem much worse than they need to be. I have had a few in my day. I feel for you in that sense! Keep your head up and just keep breathing. Again like the doc said don't let anyone tell you you shouldn't feel good because your numbers aren't where they think they should be. If you feel good just continue to do that

Emilee

 

[Faust]

Look at it this way, the absolute worst that can happen to you in this country in your situation (besides the obvious) if you keep your health somewhat up, is you become a ward of the state. I'm in a similar "what would happen to me if my family were gone" situation in my mind, and i've made peace with it. There are all kinds of group homes, and if you were fully on disability and medicare/medicaid, and other programs, i'm sure it wouldnt be all too horrible. Granted i've never been there, and i'm sure it will suck compared to anything else, but it doesn't have to be a death sentence. Wouldn't it be great if we all had a filthy rich relative willing to take care of us when we got like this? I mean, the states are good for something. We have medicare/medicaid, SSI/disability, rent assistance, food stamps...You could probably like on your own in a studio apartment furnished by the state. I'm not trying to be doom and gloom, i'm just saying that if the worst situation besides the obvious takes place, all isn't fully lost.

 

[Lilith]

As far as your FEV1, I wouldn't worry too much. Mine is somewhere in the lower fifties to mid-fourties, but I have also been told that the numbers aren't all that relevant in comparison to how you're feeling. Sometimes, my FEV1 will suck, but I feel okay. Other times, I may feel like I'm at about 75% energy, but my FEV1 is high, so don't always trust the numbers. I think half my problem is my sinuses, anyway. Every time I try to do a PFT, sometimes I know I can do better but the air won't come out due to the crap in my sinuses dripping into my throat. Try not to stress yourself too much. It'll only make you sicker that much faster (stress will kill you just by itself!).

I get stressed too, sometimes, just thinking about the inevitable (especially the transplant). But I'm only ninteen and my PFT's are pretty much the same as yours at 33! I'd say you're doing pretty well so far!

 

[supermanfan]

I think it's a shame that some doctors are allowed to practice medicine without knowing at least the basics of diseases. It's obvious that your allergist knows nothing about CF. We CF people have learned to adapt to lower lung function...

What I might suggest to you is that you mension transplant with your current CF doctor. All they can tell you right now is that you are too healthy, and that is actually a good thing. Just remember that you don't want to wait to long. You might want to even suggest getting oxygen for when you sleep at night. I did that for years. Your breathing slows down at night so your body actually gets less oxygen; not that you are exerting yourself while sleeping, but getting ample oxygen does leave you feeling refreshed in the morning. That might be a good idea for you. Again, I did it, and noticed a difference; I continuted to work full time, and go to school.

Good luck with everything

 

[anonymous]

I just saw my typo- I meant to type borrowed time! <img src="i/expressions/face-icon-small-confused.gif" border="0">
Hope