Tuesday, May 10, 2011

MIA

Yes, I've been totally missing in action, or I could say Marcia's In Action...I'm feeling good these days, I have officially bounced back! While I was in the hospital, I really couldn't envision that I would ever get "back" again, pft's were falling so quickly. The transplant word was discussed, it was difficult to breathe, just felt like everything was going downhill pretty fast. It took a LONG time to bounce back this time, but a couple of weeks ago, I realized I'm back at "my normal for me". I'm so amazed. I truly am! The only thing that's difficult for me is not overdoing it. When I feel good, I tend to go top speed (I'm saying top speed for me, not comparing me to a healthy person). Then I get overtired and my chest hurts and I'm mad at myself. So I'm trying...Also trying to do some walking when the weather is nice and some other exercises at home. Going up stairs are still hard, but GOOD exercise. I basically hate stairs...

I started writing a blog post a few weeks ago, but never got around to posting it, so instead of erasing it, I will post. Just keep in mind that I wrote it right before Easter. Sorry Barb, Diane and Judy for not keeping up the blog very well, thanks for checking in and being concerned. And Diane, it was good to see you guys again this weekend! Thanks for taking time to stop in! OK, so here is my earlier post written toward the end of April...

Blogging break... I have pretty much just really been focusing on getting healthier, doing the exercises I'm supposed to be doing, walking on nice days (hasn't happened too often, we've had so much rain). I'm feeling a lot stronger and am not NEARLY as out of breath as I had been. I can now go (slowly) up our stairs all at once, instead of stopping at every 3. I've been pacing myself with what I've been doing, stopping if I get tired...but overall, I'm coming back!! I still haven't been "out" much other than going to Jeremy's (3 minutes away). Yesterday I went and joined in on the fun with helping the boys color Easter eggs. While Steph was getting things ready, Kayden (4) said, "I remember doing this when I was a small boy." I've been working on making Resurrection Eggs for the boys and want to do that with them this weekend.

Changes...I love to work outside, but while I was in the hospital, we decided I really need to cut back. So Warren took out our fence in front of the house, we had flower beds on both sides of the fence, we're just going to plant grass up to the sidewalk. We are also getting rid of the herb garden. I will just plant a few herbs in a pot, because I do like to go snip while cooking. It makes me very sad to get rid of stuff, but I know I can't do all that work anymore. We still have plenty of other flowers and a retaining wall with bushes and flowers.

Cleveland Clinic...Monday we had a long long long day. I had two appointments there, one with an immunologist and one with a pulmonologist. Both were very interesting appointments! The immunologist did a test to see how well my immune system is working. The nurse injected some tetanus and yeast just under the skin in my arm. We had to "read" the results, do some drawings on my arm, hard to explain. We had to send in the results. He also wants me to redo the test in June too, because my immune system could be very weakened from all the prednisone I've had to take all winter. So I won't know for awhile if I'll need gamma globulin treatments or not.

The pulmonologist is the one who diagnosed me a few years ago, so we knew him. He had also done a bronchoscopy on me at least a year ago. We had stopped at Akron to get my lung CT scan, which he went over with us in a couple different ways...it was so interesting! He would zoom in slowly through my skin, then we'd see muscles, then heart and then into the lungs. He showed us the areas of bronchiectasis...the tubes were dilated and lots had little pockets to trap mucus...that's why it's hard to get out! He spent a long time with us, about 90 minutes! Great guy! I had been on azithromycin for a couple of years every MWF...I was taken off several months ago, then put on it again in the hospital. He works with transplant patients and they have found great results with daily azithromycin, so he said why not try that with me? So I'm adding that daily.

Now for the OMG part...I had to do PFTs of course and I had major anxiety doing them in the hospital, because they kept falling every time! I got so nervous again, just thinking about it, but it ended up that they were in the mid 40's!! Oh my gosh, I was pretty amazed and thankful...it had been down at 30% in the hospital, so big improvement! If I can just keep it up...



5 comments:

The Starr Family said...

So good to 'hear' from you Marcia! Thrilled that you are feeling better...

Keetha Broyles said...

So so glad to hear all this news!

I am just ecstatic over it - - - far better improvement than I even dared hope for!!!

Judy said...

Such GOOD news--so happy to see you "back in action"!! Do keep up the good work!

Colleen said...

I am SO GLAD you are feeling better!

blessedmom's simple home said...

So glad to read that you're doing better Marcia! I'm sure it was hard to give up the garden, but herbs snipped from pots on the window sill are wonderful too :)
Praying that this good health continues.
Blessings,
Marcia