Sorry, I haven't blogged since my transplant appointment. I am still trying to gather my thoughts and make a decision on what I want to do.
Everyone seems to be pushing for me to be activated. I just don't know if I am 100% mentally ready. Next week I go see my CF doctor and I will have a long conversation with him on why I should be activated. If he sells me on it, I will go active. Either way I am going to get a blood gas done so that way Brigham and Women's have everything they need to make me active when I am ready. I have decided no one but me is going to make this decision. I am listening to every one's input but it is still my decision.
Mean while, I still want to prove everyone wrong. I have been pretty dedicated to the treadmill. Everyday it get easier and easier. My goal is to get on it 5 out of 7 days a week. My speed is getting to the point that I could be jogging. Maybe in a few weeks I will attempt to jog. I have been adding incline to get my leg in shape. My heart rate has been great. My oxygen is good as long as I remember to breath through my nose. I get singing to the Ipod and realize my oxygen is dipping. Ooppps.
The past 2 years, I have spent way too much time at home. I need to stop doing this. So yesterday, I created a list of everything I want to do this summer. This will get me out of the house more.
I also created a list of goals for my health. If I can meet these goals, I should be able to hold off on the transplant. I am also going to have my CF doctor help me create a list of things to watch for so I know when I need to be active on the transplant list.
I had my PICC pulled yesterday. Freedom at last. I had it in for almost 8 weeks. I used it for 5 of those weeks. My goal is to go the entire summer with out needing IV antibiotics again. They only way I have a chance of doing this is to stay active and keep on the treadmill. I can't give the mucus a chance to settle.
I better get back to work.
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8 comments:
way to go on the treadmill stephanie! i'm back on IVs but still trying to at least walk a mile or so daily...so frustrating when you're sick! but you're so dead on about the need to keep pushing and to have a long convo with your doc. i have no doubt AT ALL that you will make 100% the right decision for you at the right time.
in the meantime, here's to proving everyone wrong (for both of us)!
Way to go!!!
I find making lists of what I want to do helps me to do them. I enjoy crossing stuff off said list :)
Best of luck staying off the transplant list longer!!! I have faith you can do it!!!!!!!!
<3
I love the list....share with me if you like....I would love to see. I have made on as well after recent changes in my life (that's a conversation we will have later) anyway YOUR DECISION and you stand by that. I love you and miss you like crazy. I am about due for a trip soon. Keep up the good work my love!!!
Sounds like you have the right mentality and that's a GREAT job on the treadmill. One piece of advice I would give is that if you decide to run, make sure to go at at least a 5.0 pace. I've found that it is easier to jog at that pace than to try and jog slower at a 3.5-4.9.
As to your question on my blog, my 2.1 in the morning is just walking. That time also includes J Bells bathroom breaks. When I walk it without her I can usually get it down to about 34-35. Thanks so much for the encouragement! And just so you know, I'm rooting like crazy for you and if there is anything I can do please let me know.
Ronnie
Hey Steph! I saw your blog off of Ronnies post. That's awesome that you made a list of things to do this summer. Great job too on the treadmill! Wishing you all the best!!!! Enjoy being PICC free too, woo hoo! :)
Stephanie,
My name is Natalia and I am just being listed for a lung transplant. I found your blog through Ronnie. I read his answer to your question about accepting the fact that you are being listed. (Ronnie always puts much thought to his answers and I respect his opinion)
To be honest with you I never got the idea of not wanting to get a lung transplant, when you come to the end of your life. I do understand that people bounce back, I was 30% 10 years ago, and with hard work, and lots of luck I was back to 58% within a year. It does happen, it was not my time then. But there is a time when it does not happen, and doctors usually know when that it. There are other factors than just FEV1 (25% at the moment)that they take into account, there is weight, oxygen, CO2 levels (starting to retain now), not being able to get off IV's (that's me). Lots of things. I also think that most people with CF just know after some time that it is time.
The question 'do I want to have a lung transplant' never occured to me for one fundermental reason, I want to live! We may not know how tx will work out, we may not know how long we will live after, but I have one certainty right now, I am not going to live long in the state that I am in right now. My lungs are failing (and god help me when I no longer find these Iv's working), and what a beautiful thing it is to have the option that we have. To get new lungs, to feel better.
That is not to say that I do not have anxiety during this time. I do. Being listed is hard. But I know I have battled for as long as I could. And when I was well I could not imagine feeling this sick. It is something that no one can imagine until they are there. But right now, I know it is time, and I have summoned all the strength and love and hope I have in me, because I have so much to live for! I don't want to leave my husband. I don't want to leave my soon to-be-born daughter. I want to live! That's what you should embrace. Leave it all behind,and focus on the positive! Keep working out (we all should!) and staying positive, but my feeling is, and from the friends that I have had with CF, people that wait too long often don't make it to get those lungs, and that's a frightening reality! All it takes is one infection that you can't beat. A flu. It's a risk waiting too long.
Love your blog, I will read more tonight. Just thought I would add my 2 cents, since we are in the same spot!!
Good luck!!! xoxo
Hey! I just started my own blog and was touched by reading your correspondence with "Sick Boy" on his site, so I was directed to read yours. I am almost 29 and in similar shape as you, weighing a lot about transplant. I also had a PICC pulled this week, I think on the same day as you (yesterday? Wednesday?). Otherwise, can I email you? I want to tell you some things I don't want to post here (i.e. privacy) - If you wanna correspond, drop me a line at CysticGal@gmail.com
Also, check out my blog at cysticgal.blogspot.com
:)
Hi Steph -
I found your blog from Ronnie's. I am in a similar situation right now - trying to decide about txp. My docs have brought it up but most of the time I try to convince myself that I'm just not sick enough for that yet. I am still healthy (I think) but I tend to get sick easy, do IVs a lot and am allergic to MOST of our abx that we use. It's frustrating!
Anyways, if it's OK, I'd like to keep following your blog. Take care!
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