Saturday, February 21, 2015

What's the Plan?

Juggling the Medical Stuff:

I'm glad my life has been busy, since being busy keeps me focused. Plus, I love it , which most of you probably already know. I just prefer to be busy with more of the non-medical stuff  rather than medical crap. I feel like I'm a pro at Juggling life and medical problems.

 For example: I'm getting married this August and I am planning the Great Strides Walk in Princeton (June 27th). I LOVE planning events, I'm super organized person (to a fault sometimes).  I wanted to make sure to plan the  wedding in Jan/Feb, so I could focus on the walk in April/May. Both events mean a lot to me and I wanted to make sure to plan each the best that I coud. And I'm pretty excited that I'm turning 30 in about 1.5 months!!!! How exciting is that???  For a long time I thought I'd never get the chance tobe 30 years old, or marry, or grow!  But I am, thank you to new research!  My lung function is around 52% which is okay, but it is at the low end of my baseline. Typically I run between 55%-58% on average. Usually around 50% means I need IVs and then usually after IVs I jump up to 60%. In 2013, after 2 weeks on IVs I jumped from 48% to 64%. This last month I only went from 48 to 52% after my usual 2 weeks of IVs, so clearly not the repsonse I usually get.

Doc B had to remind me not to be too hard on myself, that its not ALL about the numbers. I mean some people can work with 30% lung function and others are on oxygen full time and listed to receive transplant by that point. Everyone's bodies work differently and depending on secondary issues it can really vary.  Well, from experience of being at 40%. It's safe to say under 50% will be hard on me. In the 40s I feel like I can't breathe. Doc made the decision to try a 2nd antibiotic inhaled via nebulizer for 2 weeks.  I think it helped and I feel good, but I can tell my numbers aren't in the 60s. I can tell the difference in my breathing and I'm pretty aware of my body. So I do feel good, so I hope my numbers will show that on Monday. I'm supposed to start a clinical trial on Monday too, so let's hope it all goes smoothly.  Pic: Me doing hypertonic saline & vest treatment!

Lung function problems. I can deal with that, but it really does feel like a juggling act when I have lung function problems ,GI problems, and currently my liver needs retested to see if my numbers are still elevated...honestly GI problems are the worst. Diarrhea, intestinal cramps (which keep me up at night), and  nausea, etc. Obviously, we have to rule out bowel obstruction first. Which means 2 full doses of Miralax a day, Which is fine and is a great idea, but...

Sunday will be interesting though with all my plans. I'm supposed to take Miralax Thurs-Monday, so on Sunday in the morning take it, drive 1.5 hours with my bridesmaids and then shop for bridesmaids' dresses and go out to eat. Then take it again, and drive 2.5 hours back to my home/apt. Then Monday evening I have a doc appointment. I'll find out my weight and current lung function. Then doc will have to decide if my lung function is good enough to stop the extra nebs and start the clinical trial.

Even though taking Miralax is gross, I'm glad it's our first step. It's much better than jumping right into scans and xrays. I'm a big fan of trying small things first. I don't really want to have to add another medication to my list for GI problems. So for the last year I've been trying different things. I don't drink caffiene (for over a year), cut back on diary, and I sleep a regular 8 -9 hours at night or try to (same set schedule), I also eat healthy and work out.

I think making good choices helps me to limit the number of medications & treatments I need. Of course, those 50 pills are necessary. I have to take pills when I eat, but there are certains things I can do at home to help. I also, don't like to take pills for small things. Headaches, heart burn, stomach aches, etc, nope I just deal with it. I figure I put some much into my body, at least I can control the fact I'm not adding to that amount. PLUS, with all the clinical trials I want to keep stable. I also eat healthy foods, but make sure to hit my food count. I  try to build some muscle mass and give my lungs a little work out!

Some CFers do nasal rinses (I've done some before and have a nose spray), and have you heard the latest cool way to do therapy... It's surfing! That's right, surfing in the ocean helps CFers thin out and cough up the junk in their lungs. Which makes sense, it's just like hypertonic saline, but way more fun! I know it makes me want to surf!  One organization that is helping people with CF realize their surfing potential is Mauli Ola, check them out here!

I think it's awesome, if I only I liked swimming and water. LOL. My CP and water don't get along. I tense up in water and hate that feeling. I really wish my efforts at home would help my stomach/intestines issues more. But I guess only time and my doc's appointment will tell me whats going on with my liver, colon, and intestines. So wish me luck on Monday.

AND I'm soooo excited this weekend that I'm taking all (except 1) of  my bridemaids shopping for their dresses tomorrow!  So yes, I've been busy with lots of medical and personal events. But I love that I've been busy at least, just wish some medical problems would go away. Guess we'll see..

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