Hey Sonia I wanted to reply to this that you said after I posted last time.
<div class="FTQUOTE"><begin quote>I really am resisting, but mostly because I've had ECHOs and EKGs and such within the past year and my heart checked out fine and the cardiologist wasn't worried about me exercising (though he didn't know I drop to 83 with a run). Also, I have been able, over the past year, to increase my incline and was increasing my speed and length of run (until I checked my HR and O2 and became worried)... Before that, I wouldn't have given a second thought to not being able to tolerate what I was doing cause I was actually PROGRESSING. So, perhaps my body was deceiving me or I was just getting used to breathing with 83 while running. I have no idea. People say you should have some sort of symptoms with O2 sats this low if its a problem and I just really have none. (Although perhaps I will notice when I wear O2 that its much much easier, so maybe I do have symptoms I've become used to?) Anyway, its little tidbits like that that make me question it. </end quote></div>
I had also had several tests done to check my heart. None of the tests ever indicated that I had any heart problem at all. I actually ended up in the ER last summer thinking I was having a heart attack or something because I was having extreme chest pain, numbness in my arm and tightness in my neck and chest, I felt like my heart was going to explode and I just couldn't catch my breathe. They ran almost every test under the sun and everything came back normal - except for a mild potassium deficiency. I took IV fluids for a few hours and was sent home with a diagnosis of heart palpitations and that was the end of that. I had been complaining of extreme fatigue when I would walk. Something that had seemed REALLY simple only weeks before started to make me just completely exhausted. I would walk and felt like my legs could just give out at any moment. I would get somewhat lightheaded and I at times would get dizzy. I would just slow down and let it be. I also had issues with O2 saturation at night. I desatted severely - meaning into the 70s at one point though.
I asked for a home oximetry reading for overnight use cause I was having trouble sleeping and that is what led to the O2 use starting for me. I then decided to just try it out while exercising because I was still having such a hard time. I would just put on the O2 while I walked on the treadmill. The first time I used the O2 while walking I noticed a difference. I was able to walk the same pace as before with NO fatigue at all. It was wonderful. At that point I still did NOT know I had pulmonary hypertension.
I went through the evaluation process in February for transplant and THAT is when I found out about the hypertension. I had to go through a right heart catheterization with exercise and that is what helped them diagnose my hypertension. NOT all right heart caths involve the same stuff I went through I have heard at least, so if you read my blog and see it don't freak out <img src="i/expressions/face-icon-small-smile.gif" border="0">. Once I had that test though I talked to the transplant doc about it and he basically asked me what symptoms I had if any - meaning fatigue and so on and every symptom of hypertension is a symptom that I had. I had gone months complaining of these symptoms to ER docs, my CF team - actually 2 different teams because I had switched docs in between all of this going on. I had a 24 hr holter monitor, ELG, ECG, CT Scan, Xrays, blood work you name I most likely had it when all was said and done and the only thing that really came back abnormal was the Right Heart Cath - even in Tx workup that was the only heart test that came back abnormal.
<div class="FTQUOTE"><begin quote> I also feel like once I'm on it for a run, I'm on it forever for a run and will maybe like it and want to wear it when I'm walking at 93 and maybe want to wear it when I'm sitting around at 96.... I mean, at what point does it stop? Once you "get used to" that O2 feeling and it getting my sats up, will I then want it all the time? I absolutely do not need it when I'm sleeping. My sats are 96-97. BUT, if I like it when running, why wouldn't I hook it up if I can get those sats to 98-99? I mean, where does it stop? Will my body crave it more and more? Will I EVER be able to jog without it if I choose to? Or will I fall over from all the extra strain (whereas now without it I function fine as far as I know). Will my O2 sats at other times become worse becasue they're used to the extra "help" they get when I run? </end quote></div>
As for becoming "dependent" on the O2. I look at it this way - I was terrified of the same thing. I was thinking great here I am going to start using this at night and end up on it all the time and then I will never come off it. Well for me it worked that way, BUT I needed it. I started using it at night in December of 2006, within a few weeks I was using it for exercise because I needed it and exercising without it was so incredibly hard to do. After a few more weeks I started to notice that I was having a hard time coming off it in the mornings - I was only on 2 liters at night but I would have to lower it to 1 liter for like 30 minutes then step off of it after that. I was still managing (amazingly) to go about my day without it for the most part but found that when I was at home I just kept it on. I was really in a bad way without it. I talked to my docs about it and they basically told me that if (IF) you ARE indeed getting enough Oxygen then your body will not crave the O2 once you start using it. If you feel air hungry or air starved then you most likely need it at that time. I fought the idea of using it but carried some with me just in case I was in a situation that I DID need it. I went in the hospital in January for surgery and a clean-out and toted my O2 (while I was NOT using it I was just bringing it in case) I got to the hospital room and my sats were in the 80s at the time. Amazingly I felt GREAT! It was the best I had felt in days lol. At that point I realized that my sats must have been really in the gutter if I had been feeling crappy before that and felt great with a sat of 88-89. So I started using O2 full time at the end of January - about 1.5 months after I started using O2 at night for the first time. I think it depends on each person though and their disease process. There are alot of people that use O2 when they are working out and ONLY when they work out - or when they sleep but don't need it when they work out. It is the nature of the beast at times. Then there are others that NEVER need O2 or don't need it until they are quite literally on their way out. For me I did really well until about 8-9 months ago then hit a slippery slope and things came on really quick. I went from being "okay" to getting sick every 2 months or so, needing O2, barely able to do anything, not able to lift much of anything, moving at a snails pace and so on. It really just depends on the disease and its affect on the person. Each one of us is so unique in that way. I would give the O2 a go round with the exercise. Listen to your body - and the sats. Just because you MAY FEEL GOOD doesn't mean that your body is doing good with the lower O2 sats. They are organs they can't really speak, but they will give you signals as to what is going on - I.E. the heartrate and such. My resting heartrate before Tx got to 115-125 (RESTING) and when I would exercise it would sky rocket I can't even recall the numbers honestly - and that was with 2 liters O2 at rest and 4 liters O2 with exercise (my sats dropped well into the 80s with exercise unless I was on 4 liters or more). Now 1 month post - my resting heartrate is about 75ish and my heartrate with exercise peaks at 135 - HUGE difference when I am getting enough O2.
I hope that you are able to just put aside the reservations - THOUGH I can say I completely understand the hesitations and the pains that it may bring emotionally and mentally. It is NOT an easy transition. Just remember you will be doing it to take care of your body. Alot of people have saturation issues when they exercise - CF or not. Just don't let stubbornness prevent you from taking care of the rest of your body. It prevented me from doing what was needed for a short while until the Tx doc put it into perspective - he basically told me You need to be on O2 - if you don't we may end up needing to do a Double Lung AND Heart transplant on you .. so you decide what you want to do. I had already been using the O2 full time - but at that point I stopped complaining about it and stopped worrying so much too lol.
Take Care of yourself,
Lindsey
