Update

I don't have a whole lot to update, just that I do think I'm getting a bit better each day. Today I went back to pulmonary rehab and just did the group activities (stretches, arm bands & weights)--I may do the dread...err treadmill next time. I can tell that I've lost ground there, but hope to be stronger & back to my baseline soon. I go to rehab with such a good group of people & I think they've actually missed me! It's probably been a bit quieter there without me! lol 

I will update more later in the week.  Have a wonderful week :)

Update

Thought it was time for an update. First of all--no blood of any kind today and only had very minimal yesterday! Praise The Lord for that!

Secondly, I got the PICC line removed today and am glad to be done with IVs! I will continue on 2 weeks of oral meds to see if there is further improvement, but both Dr and I felt like the IV meds had probably done all they were going to by this 3 week point. I am a bit disappointed that I'm not as good as I usually am post-IVs, but that may be the norm now. It seems that each time I use IVs they are a little less-effective then they were the last time & I have a feeling this also happens with my CF friends that have frequent IV therapy too.

It has been such a joy to have Dakota home and she's been such a help to me this week! Her boyfriend visits often, so he's gotten in on the chores and probably received a limited education on a few medical situations/procedures as well! We really like him--he's a good kid and I'm glad Dakota has had him to lean on. I'm sure this is just how they envisioned spending their Spring Break too! LOL The weather here has been cloudy & rainy this week, for the most part, so I don't think they feel like they've missed out on too much.

The plan from here is to let my body heal, catch up on some sleep and see what the oral medications do in the next couple of weeks and then assess where I need to be as far as going to St. Louis. Prayers for healing and guidance appreciated.  God Bless

A bit discouraged

As mentioned in the previous entry, I coughed up some blood yesterday and through the night and even today, although it seems to be getting better here in the last hour or so (thank God and I hope it continues!).

 I usually am pretty strong about my health, and ultimately, I know that God is in control, but I told Garry today, in an emotional moment, that I’m ready to catch a break! It seems that I’ve been sick more often then not since probably Christmas-time and with not bouncing back as well as I normally do with this round of IVs, there are some tough, life changing decisions to be made that obviously effect not just me, but a lot of people. I have been praying for God to reveal His will & so now I have to decipher if this is what is happening.

I do want to share something that I thought was cool. Earlier today I was feeling pretty despondent & just threw a prayer request out there on facebook. I was humbled at the amount of people that responded and there may have been others that prayed, but weren’t comfortable stating so, & that’s OK too. What was cool, though, is I had this feeling of a weight being lifted off of my shoulders & I don’t remember ever having felt that before. My mom used to say that she would pray & pray until she felt the weight lifted off of her shoulders & now I understand what she meant. J

So, if you’re one of those people that have prayed for me or thought of me, I thank you from the bottom of my heart!

Ugh

I'm feeling a little better today, but have coughed up some blood again! To be honest, I'm surprised that I haven't coughed up blood already as much as I've been coughing the last few weeks. I am resting now & trying not to exert myself too much & will hope that it goes away. I'm just thankful that I haven't been as congested today as I have in days past! If I'm still coughing up blood this evening, I'm to call my doctor and a possible hospital admit may be in the works.

IVs should be done Friday if doctor & I agree. I'm not as well as I normally am after 3 weeks of IVs, but part of me thinks they've probably done all they're going to by this point...

Prayers & thoughts MUCH appreciated!

On another note, today is my wonderful husband's birthday! I thank God so much for Garry. He's just been my rock through a lot and is such a blessing to me! He takes such good care of me and I am truly blessed to have him in my life!

God Bless~
Lynda

Red Man's Syndrome

When I set up this blog, I never dreamed I'd have so many updates! My latest is that I started a new IV last night; vancomycin. A common side effect of vanco is what's called Red Man Syndrome. I don't notice it making me red, it just makes my scalp itch like crazy. I feel like a mental patient from scratching so much! To help with the RMS, I take Benadryl before the IV, so I did this last night with the first dose. I did have to stop the IV 5-6x to let the itching die down. So, I do the IV and head to bed. I was soooo sleepy, though, from the Benadryl.

So, this morning, I get up at 6 am for the next vanco, but notice that my eyes are super itchy and they felt like there was fine sand in them & my lips and face was swollen. So, I call the home health nurse who lives here in VC, and asked her what she thinks. She had my doctor paged & my doctor wanted to see me at 11 a.m. So I went in at 11 and Dr. thinks it was an allergic reaction & isn't sure from what, as I've taken vanco a few times before & other than the itching & maybe some tingle-y lips, no side effects. So, now I have more Benadryl and Prednisone (steroids) in a pretty high dose added to the mix. I am currently infusing & haven't had any problems yet! (knock on wood!). I'm hoping the Benadryl, which makes me sleepy, will off-set the steroids that make me wired!

So that's today's update for anyone that cares--have a great day & weekend! :)

Update

I saw my CF doctor today & told her that I just didn't feel like the IVs were doing what they should be after almost 2 weeks, so she added another one that I will start tomorrow. So now I will be doing IVs approx 7 hours each day! It's not so bad--the 2 a.m. IV that takes an hour is the only one that's rough.
Hopefully I will be done with IVs on Friday, the 23rd!

I am still coughing and I often get winded with exertion and energy level isn't great, although I did walk for approx 15 minutes at rehab before seeing the Dr and would have walked further, but they had a state-wide tornado drill and wanted us all to get into this bathroom/storage room together & if you know me & what a germ phobe I am, then you know that there's no way I was going to confine myself to a small room with approx 15-20 others, so I split! lol

That's it for this update. As always, thanks for the thoughts/prayers and keep them a'coming!
God Bless
Lynda

Update

I thought it was time for an IV update.
I don't have big news, but I do feel like I'm a bit better each day, so praise God for that! My energy is slowly returning & I'm not quite as dependent on oxygen.  I have at least one more week of IVs to go, so hopefully I will gain a lot of ground during that last week!

Again, thanks for the thoughts & prayers & for checking in :)

Home IVs

Today I am going in for a PICC line and will be starting home IVs today. These back-to-back colds are the pits!

If you are reading this, please say a prayer that I won't have blood clots with the PICC line. Doctor is putting me on warfarin after PICC line is in, which brings up the hemoptysis issue, so please also pray that I won't cough up blood either! Thanks.

I most likely will get a port after I get these IVs done. I hope that goes well, as I've heard some stories on complications from ports :o

Numbers

This is mostly for my CF friends. I think it's going to be Greek to anyone else.

Numbers:
FEV1  0.65 Liters   25%
FVC 2.15 L   69%
Blood gas PCO2=44.0

I pulled up my numbers from my last eval in May 2010 and I'm actually just slightly better this time?? I suppose being older and weighing less? may make predicted numbers different, so there really may not be an improvement--hope that makes sense. One thing I know for sure is that I need to get to walking & exercising to get my lungs built back up. It seems that I've been sick or on IVs since the beginning of the year, so my exercising/pulmonary rehab has slacked.

I am one of these weird people that most often does worse on PFTs after bronchodilators--they seem to make me wheeze & get tight initially. My FEV1 after Xopenex was 0.55/21%. Go figure? Unfortunately, when doctor was telling me that I was in a "gray area' and to come back in 6 months, these are the numbers he was working with, as most people do better post dilator. After he & I had the tx consult, he poked his head in the door later & said "Good News--I was looking at the post numbers! You must be one of these odd people that actually do better pre." That's all he said, didn't really say "In light of this..."

I will say that I was worn out by the post PFT time. When I do PFTs, I keep getting better numbers with each try, as I am able to clear lungs some with coughing during the first few. Probably most of you do the same? Anyway, it sure makes for *a lot* of attempts at the spirometry & with having a cold this visit, I was just hot, tired out, & numbers were not getting better, post bronchodilator, no matter how much the RT wanted them to be. I finally told her "I will do a couple more, then I'm done." I felt like we were beating a dead horse or something.

So, that's it in a nutshell for anyone that cares :)