Quality of Life

[TCNJcystic]

I have a general question for anyone out there who feels they can answer it. At what point in the progression of CF did you really feel your quality of life was beginning to change for the worse?

Right now I'm in college and as active as everyone else I know, and I keep wondering when I'm going to wind up with a port, or spending my days in bed, or not being able to have fun with my family and (hopefully) children.

I don't mean to offend anybody by asking, but it's something I constantly think about as a young guy with CF. (Back in the 80's, who'd ever think a 20 year old would be a young guy with CF.)

 

[Faust]

Good question. I think it's all way specific to the individual, time of diagnosis, compliance with treatments, being proactive, mental toughness, and mutations. I was bad off here and there in my early teens, and kind of evened out in my 20's. I was getting fairly bad up till I embraced oregano oil. I think there are many supplements out there than can massively help CF's with their overall health and symptoms. I now feel pretty close to normal, hence me working again seriously.

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SeanDavis</b></i>

Good question. I think it's all way specific to the individual, time of diagnosis, compliance with treatments, being proactive, mental toughness, and mutations. I was bad off here and there in my early teens, and kind of evened out in my 20's. I was getting fairly bad up till I embraced oregano oil. I think there are many supplements out there than can massively help CF's with their overall health and symptoms. I now feel pretty close to normal, hence me working again seriously.</end quote></div>

Where can you get oregano oil, did your doctor recommend this?

How does this help cf?

 

[Faust]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SeanDavis</b></i>



Good question. I think it's all way specific to the individual, time of diagnosis, compliance with treatments, being proactive, mental toughness, and mutations. I was bad off here and there in my early teens, and kind of evened out in my 20's. I was getting fairly bad up till I embraced oregano oil. I think there are many supplements out there than can massively help CF's with their overall health and symptoms. I now feel pretty close to normal, hence me working again seriously.</end quote></div>



Where can you get oregano oil, did your doctor recommend this?



How does this help cf?</end quote></div>



Several of us are nebbing the water soluble oil of oregano from North American Herb and Spice. Some take it orally, some do both. There have been a couple people who stopped using it due to sensitivity issues, but there are many who report massive positive results on it.

Just google up Oreganol P73, or H2 Orega, and north american herb and spice company. You will find a good deal of info on it.

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SeanDavis</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>



<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SeanDavis</b></i>







Good question. I think it's all way specific to the individual, time of diagnosis, compliance with treatments, being proactive, mental toughness, and mutations. I was bad off here and there in my early teens, and kind of evened out in my 20's. I was getting fairly bad up till I embraced oregano oil. I think there are many supplements out there than can massively help CF's with their overall health and symptoms. I now feel pretty close to normal, hence me working again seriously.</end quote></div>







Where can you get oregano oil, did your doctor recommend this?







How does this help cf?</end quote></div>







Several of us are nebbing the water soluble oil of oregano from North American Herb and Spice. Some take it orally, some do both. There have been a couple people who stopped using it due to sensitivity issues, but there are many who report massive positive results on it.



Just google up Oreganol P73, or H2 Orega, and north american herb and spice company. You will find a good deal of info on it.</end quote></div>


did your doctor recommend it

 

[Faust]

No he did not. I took it upon myself to be my own advocate since their treatment wasn't helping me anymore. After he saw my results from using it, he said if it works for me, keep it up.

 

[Ender]

Can you make your own oregano oil?

 

[Faust]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ender</b></i>

Can you make your own oregano oil?</end quote></div>


I have yet to try, but I have been able to make my own petroleum oil by randomly shooting at the ground, when i'm out "huntin food".


/theme song for beverly hillbillies starts to play

 

[anonymous]

Thats a very good question..and I think the answer depends on the person. I was relatively healthy as a child. As a young teen I had a few sinus problems. When I hit 17 I started having IVs. It wasnt long before my veins were shot. I was told if I didnt choose to have a port-a-cath so they could give IVs I would die. So I reluctantly agreed, (as a teen I thought my life was over with that thing). I finished high school, had a year off and decided to start attending a local college. I was doing ok health wise my FEVs were about 45%. Once in a while I would be hospilized for IVs. About the second year of college I started getting sick often, and had to stop taking my classes. Again I thought my life was over (couldnt go to school..couldnt work). I had a period of time I seamed to do ok, until I started coughing up large amounts of blood...(physically draining, but it didnt hurt.. but it was a very visual admittance to myself how sick I was). I underwent surgery to stop the bleeding. After that was resolved I had a couple of "good" years..were I didnt have to have IV's hardly at all. My FEV's were low...30% but I still was holding my own. In may 05 I had to have dental surgery to remove all of my teeth because they were deemed problematic to my health. ( so I could barely eat for 3-4 weeks and lost alot of weight) I felt horrible, and looked not much better. I was down to 90 lbs... in the first week I had lost over 10 lbs. I hated to but I agreed to a g-tube. So I had the surgery to have one placed, which was more of a problem with pain and pain management supressing my resperations. While I was in the hospital with that I was over-fed.. which everyone is pretty sure I asperated while sleeping which led to pneumonia. The medication they used to treat me built up in my system and unknowingly destroyed my white-cells leaving me severely immune deficiant and with breathing problems which left me on oxygen constantly, which I am completely unhappy about. Which all leads up to just this year. Shortly after my 26th birthday my mom got the Flu (she had a flu shot too) I called my CF Clinic to get them to give me Tamiflu to help prevent me from getting it. They decided not to give me it...<img src="i/expressions/face-icon-small-sad.gif" border="0"> big mistake...3 days later I got the flu, seven days later back to the hospital. Finally got released after a week and I have been home on oral antibiotics to treat "complications of the flu infection" . Last week I went to my monthy Clinic visit only to have it dropped on me that with my lungs as damaged as they are (FEVs at 20%) statistically live about another year. Boom...what I always knew would happen but always in my mind had the hope it would be a long ways off...the fact that I dont have long on this earth. As far as my quality of life...I would have to say up until the oxygen...I kinda just rolled with the punches, but having oxygen is something I still havent become comfortable with...it is my 50' leash to my home. It is the first thing people see when they look at me and I think it has hurt my personal relationship.(my bf of 2yrs left me shortly before christmas after we found out the oxgyen was a permanent thing). So now more than ever I am trying to walk the fine line about what I am willing to deal with. I know I will not allow another G-tube..if this one gives out or has to come out. I will keep my port, and I would probably agree to another one (i have had this one since 1997). The oxygen Im not sure...I have had thoughts about taking it off...and just living my life until I cant anymore. However, Im not sure I could do that emotionally to my parents and I know I would not be safe behind the wheel. So, I guess it really is an individual decision about what you can live with and what you cant and still be comfortable in your choice. good luck to everyone.
Amanda 27 w/CF

 

[ladybug]

I agree with Amanda that it really depends on the person, and it also depends how proactive you are going to be with your care.

I was always pretty healthy, even when I contracted pseudo. at the age of 7.... I had a very normal high school and did very normal high school things <evil laugh>, not paying much attention at all to how my health was or what I was doing. I did however, always do my treatments (cause ma made me!) and take my meds. I rarely missed such things.

Then, in college, I started going downhill fast. I was in a terrible relationship (which I think made everything much much worse health-wise) and also trying to juggle a part time job and full time class schedule. As I got sicker and my FEV1 dropped about 20% and weight dropped about 20 lbs, I cut back on school and focused more on excercise and eating right... and getting rid of the creep I was dating. Without the added stresses of a full school/ work load and a crappy relationship, I just started doing better. Slowly.

Then, after college, I started going to the gym 3-5 times a week and pushing myself on the cardio. I credit this with ALL the difference in my health.... I jumped back up about 10% FEV1 and my weight went up to my high school weight (about 15 lbs heavier!)

So, that being said, I think "turn for the worse" doesn't always mean you can't turn back! I did. I thought for sure my health was going down the toilet. I could see my bones sticking out of my body, could see the bags under my eyes, and could barely walk up a flight of stairs. That's when I knew I had to do something. I would not continue to decline if I had any say in it!

I also think my decision to stop working and stop going to school for a couple years (after I started a masters' program) was the best thing for me. I concentrated soley on my health, and though I didn't want to be limited and unable to finish school cause of this disease, I felt it was more important for me at that time to get to a "healthy place" before I ever go back. I still don't go to school, and am working very part time from home. I feel this has made soooo much difference for me. Perhaps, if I can get my FEV1 way up, and can put on a bunch more weight and muscle, I will go back. But, I personally like feeling awesome, even if it means I have to sacrifice some things I really want. I guess you've got to do what you want to do with what you're given. I turned around and changed my ways in order to live better (and hopefully longer), so 'turn for the worse' is no longer an issue for me.

 

[anonymous]

Amanda,
I assume that you've considered lung transplant & decided it wasn't for you?
Somehow that helps me deal with this disease, kind of a light at the end of the tunnel I guess you would say. Granted, I know that even if I sign up for lung tx that there's no guarantee that I'll get new lungs, but it's hope at least.
Hang in there.
Lynda (not signed in)

 

[Scarlett81]

Sonia I appreciated your story.

It's funny cause I think I noticed my quality of life go downhill about 3 yrs ago. And I feel that it was largely due to depression and emotional issues. I started facing then for the 1st time in my life and it hurt. And I just didn't care about anything-let alone taking care of myself.
So now I've been climbing out of that hole for a year or two, and taking better care of myself. It's a roller coaster, b/c I notice that I'll do really well and think I'm 'turning around', and then my pfts go down, or I catch a bad bug. It's very discouraging. I'm working on not letting snags discourage me.

But what I notice is that the people I've seen that have been able to turn it around, or be the most successful w/cf or live the longest-they all are very fitness oriented. They hit the gym, or run, or whatever. But I notice a common thread here.

 

[coltsfan715]

hey there,
Good question.
For me I have pretty much always done my meds ragularly, I had a period of a few months where I didn't when I was 18 and i got extremely sick and didn't like the way that felt and changed my attitude.
As for when I really noticed a change in what I could and couldn't do. I was a big swimmer growing up. I loved it, it as my life. I always took pride in swimming. Well when I started dating my now fiance and turned 21 we were with a friend swimming. We were playing a game involving a clear 2 liter bottle filled with water where you had to find it and so on. Well I had found it. It was sitting on the floor of the 8 foot deep pool. I tooka deep breath to get it, didn't even make it to within arms reach before I had to come back up for air. I tried again and again same thing. I had to get out of the pool because I was about to break down crying. I ended up having my mini-weeping session in the bathroom and had to explain why I was upset to my b/f. I can honestly say it was the first time I ever felt like CF had taken something from my life. Yes friends of mine had passed away becaues of it, but I am meaning out of my physical ability. I had a hard time with that for a few weeks. Then I accepted it and figured fine I can still play on the surface of the water lol, I don't have to go diving into 8 foot deep pools all the time <img src="i/expressions/face-icon-small-smile.gif" border="0">.
Since then several things have occured that I know are due to CF and they bother me, but I always knew these things would come along and I just try to handle them mentally and talk about them with Kurt (my fiance) he reassures me that things will be okay as far as life in general and that it is a small change in the grand scheme of things. The changes I mean are these: I can very rarely laugh hardily without ending up coughing, I find my pace has slowed down in my day to day activities so that I don't wear down as easily, I have been told and it has been reccommended that I not have children due to my health (this one was very hard for me). There are other minor things that get me on a day to day basis, but those are ones that bother me the most and I notice the most.

Lindsey

 

[thelizardqueen]

Hmm - I think my quality of life kind of took a dip less then a year ago. All the time growing up I had mild infections, I went on IVs once for some plugs, but for the most part did good. About two years ago I had severe hemoptysis and had to have a pulmonary embolization, but still felt good - still had mild chest infections, etc. This past summer I had to quit work due to stress, and the fact that I was losing wieght, always feeling run down, etc, and this past January I had a bad chest infection that for the first time required 3 different antibiotics to get rid of it, and I still have a lingering cough left. I've taken my life and health into my own hands, and have become my own advocate. I'm trying to bounce back and make myself better then I've ever been, and I think I'm slowly getting there!

 

[Bozo]

Keep pushing yourself grasshopper : )

 

[anonymous]

At age 30.