The reason for the headache? 86% O2 stats the whole walk. I didn't use my O2 and I really should have. But I have yet to use it in real public yet. I've used it on the train when T and I were traveling to PA, so I could sleep. But nothing else. Now it seems I really MUST take it with me. But can I whine and say I don't wannaaaaaaaaaaaaaaaaaaaaaaaaaaaaa!!!!!!!! Looks like a trip to REI or someplace like it is in order so I can get me a back pack to hold my portable concentrator. I don't think pulling the wheelie cart would work well and it's just too heavy to have on one shoulder for half an hour of exercise. I have Phillips EverGo if any of you have any ideas you want to share with me on back pack ideas!
So why did this all make me think you ask? Well as we all know it is very important to do your best thinking with less O2 in your blood than normal. Makes everything seems so much better right? Sensing the sarcasm yet? Well if not then look closer :)
After catching my breath and getting my O2 back to normal I sat in my Jeep. I sat there contemplating my upcoming transplant appointment. I found myself both excited and sad. Excited because I will be able to breathe for once, and sad because I need to get new lungs in order to breathe better. It truly is a bittersweet surgery.
Again you may be shaking your head and repeating that my FEV1 is decent. Most people I know waiting for lungs or doing the evaluation would kill for 40%. Me I don't feel like 40%. Most days I feel much lower. Inflammation and tightness are my issues, along with no inhaled or oral antibiotics to keep things at bay. Add into it my desatting with exertion and its a little clearer why I am going. 3 months ago when she first brought it up I thought for sure that I would not have to start the evaluation process yet. Now I wonder if it might be a good idea to do soon. Not so much because I NEED the lungs like yesterday, but because I can tell I will be a fast slider. Though I have been consistent and fairly slow since high school, the deterioration over the past 2-3 years has been much greater than the whole of the prior 10 years. I'm running out of coal for the fires...
My body is just tired.
It is a bittersweet realization. Also just to add another reason to wear your oxygen to keep your sats up: Your heart has to work much harder to pump blood faster in order to compensate for lack of O2 in your bloodstream. I was one of those who procrastinated using my oxygen and the result was an enlarged heart. My resting heart rate was easily over 125. My heart was thankfully not too damaged & repaired itself after my transplant.
ReplyDeleteEveryone is so different and CF is so individual. If you feel like an evaluation is right for you now, then do it! Better to be prepared than those of us who wait till the last minute ;)
Thanks Jamie. Yeah I know about the heart. It actually scares me that my hear rate is above 100 most of the time, unless I am sitting on the sofa doing nothing. That is one of the tests I am actually looking forward to, to see if my heart is ok.
ReplyDeleteLOL I definitely don't want to wait till the last minute ;)
Thanks for the post <3
Great job on the exercise!! And I hope you end up being at peace with whatever time frame you/your doctor decide on for the transplant :)
ReplyDeleteRonnie
Hi, I came across your blog from cf2chat and read it every now and then. Just wanted to say that if you can get over the oxygen in public issue it may be a huge help for you as it was for me and greately helped my quality of life.
ReplyDeleteI was in the same position 5 years ago, I desat quickly compared to others with same or even lower lung function. I think I trap a lot of air which causes my stats to drop with any time of exertion. You definitely want to keep your o2 above 90 if you can because it puts so much stress on your body when it is lower and also bacteria can thrive in a low 02 environment.
Oxygen has helped me out tremendously and I wear it 24/7 even maybe sometimes I technically don't need it when watching tv or something, but it is second nature now I have been maintaining well since I started using it and going out walking, shopping, etc etc is no problem.
I would recommend a homefill system, which is what I use. It is from Invacare and you can fill tanks up at home from your concentrator. They fit nicely in those small camel backpacks that are made to hold water for hiking or what not. It allows for the most independence in my opinion and are much lighter weight compared to the portable concentrators. If you are going to be out all day, you can have multiple tanks with you and swap them out.
Anyway, take care and good luck.