I am glad to post that I am feeling better. Far from where I want to be, but better. The IV's seem to be doing their job and along with all the other treatments I am heading towards the right direction for now.
Many people have asked me how I spend my time in the hospital. You must be so bored people say, and to that I say, that time passes faster here than it often does on the outside. Part of it has to do with the fact that whenever I am in here I am quite sick, and working on getting better takes a lot of time and energy. The last thing that you think of is being bored. For those of you who are curious, especially those CFers out there, here is my daily schedule right now. I am always curious about what other people do to stay well (or don't do for that matter) so here it is:
7am wake up.
2 nebulized masks (Ventolin, Tobra, Pulmazyme)
2 puffers (Pulmicort and Oxeze)
8am Physio (30-45 minutes)
Pills (ADEK, Losec, Zithro, Singulair)
9am Lentis Insulin
Pre-Breakfast blood sugar
Eat breakfast (try to get fat....or fatter)
11amPost-Breakfast blood sugar
1pm Pre-Lunch blood sugar
Lunch
2pm 6 minute walk and record distance and SAT's (every other day)
2:30pm Work out on bike or do a cardio tape (30min)
3pm Post-Lunch blood sugar
6pm Pre-Dinner blood sugar
Dinner
8pm Post-Dinner blood sugar
9pm nebulized mask (ventolin, tobra)
2 puffers (Pulmicort and Oxeze)
physio (30-45 minutes)
pill (Losec)
11pm sleep
When I'm at home I have lots and lots of time to do other things. When I am in the hospital, between those times when I am doing something, I get seen by doctors, nurses, respirology technicians, dietitians, physio technicians.....it goes and on and on. Blood work here, blood gas there, and you basically have very little time to yourself. That's why time does fly. It's when you start to get better and people leave you alone a bit, that you start to get bored and that's when it's time to go home! Plus I have my handy laptop to keep me occupied and a TV that sometimes I love and some times I hate....I would get more reading done without it.
So that's that. I am still on oxygen. 0.5L at rest, and 3L with exercise. 1L when just walking around. My SAT's are going up each day, so may be, just may be I will be able to get myself off the oxygen. That would be really nice.
That's all for now. Thank you all for your support through all these ups and downs.
Posts
My New Treatment: O to the 2
10 years ago
11 comments:
Glad you are feeling better! That .5L sounds like you should be able to get that down! That's great!!
I had a dbl lung tx July 2008 and just want you to know that life can be GREAT after tx, if that's the route you take. I am so excited for you and your hubby with the baby on the way!! So much to look forward to!
Thanks! I know that one day transplant will be the route for me
and I love hearing such positive stories! A part of me wants to do it now, but I know I have to try to see now if I can get better.
We are SO happy you are feeling better!! It cant be fun in a hospital in the best of times (*like when you have a baby*) but in the worst of times - OY!!
DONT be stubborn when it comes to the transplant!! I am not familiar with the positivs and negativs of such a transplant other then the dangers of an operation in general but you WILL Be a mommy in a VERY short time and your baby needs her mother!!! SO DONT BE STUBBORN!!
(OK - lecture over!)
BIG HUG!!!!
xox
Mark, Michelle and Tayleigh
Mark,
I am actually really really open to transplant. But the Cf team, as well as myself, want to keep me with my own lungs for as long as we can. Once they tell me it's time, I will go with no argument! Right now they are telling me that we have to see if I can get better. With transplant there is actually little risk during the actual procedure...the risk comes later. The avg. life span after is not incredibly long, so we want to keep me off the list while we can. It's ALL about timing.
Trust me, if it was up to me, I would go next week. I've had more than enough of this.
Soon we will all know where I'm heading. So far I am getting some relief...and that's good for now.
End of lecture =) (just kidding mark)
kisses and hugs to you Michelle, and Tayleigh
I didnt know all this...another lesson learned. I thought that a transplant would ensure at least a long and happy life!! Wouldnt healthy lungs do that??? But if life expectancy after a transplant is not long than by all means keep YOUR lungs!! :-)
A VERY confused Mark :-)
(who is more than happy to get lectured and educated!! I WILL read up on it though - promise!!)
New lungs would do that....but the problem is that our bodies reject new organs, by nature. That rejection comes eventually. Some people live 5 years, some 15, and I do know people that have lived over 20. Plus the drugs are so much better now, another reason to wait as long as you can....the drugs get better, and new methods are constantly emerging.
You are not stupid Mark, it's quite a common thing people say to me. Just get new lungs!!
It's not that easy...but it is a wonderful option when things cannot get better.
I love you Mark....please don't feel stupid, you are very encouraging and positive!!! xoxo
I'm so glad I found your blog. You have such a great, positive attitude.
Thank you for your honest comment on my blog post. It's very helpful hearing things from a CFer's point of view. I've tried to bring this subject up in parent support groups and everyone seems to be in denial. I've been told "We're sure a cure is coming soon so we don't have to tell our child they might need a transplant or their life expectancy might be shortened due to CF." I certainly hope that's true but not everyone, even unfortunately doctors, are aware of the latest breakthroughs. I'd hate for Seamus to be surprised by someone who blurts something out about him dying or to read some old information on the internet.
I know he's very young so we have time, but he is getting older and wiser every day and figures things out we would never have expected. I want him to know he can always trust us.
I hope you continue to feel better and these 21 days fly by.
Hey there, I'm glad to hear your feeling a little bit better. I'm still sick, it's gone to my sinuses so a visit I think is out of the questions anytime soon.
Thanks for updating...we're all cheering for you to get better and stay better!
No worries.. i never feel stupid..just feel like I want to learn more.
My dad always said to NOT learn every day is to stop living!!!
xoxo
M
You are 100% right Mark.
Oh wow Natalia that is some schedule they put you through in there! I hope that you are feeling better really soon, I can't imagine how hard this is on you.
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