The Joys of having CF

The Joys of having CF

Monday, September 29, 2014

Home-Day 1

Today was my first official day home. Honestly I didn't do much at all. I slept in(minus my 6 a.m.) IV, then ran some errands with my dad, and went and got coffee in honor of "National Coffee Day".
After errands we came home in time for me to start my IV's. I have Zosyn & Levaquin, so i'm basically hooked up from around 2-5ish. So in that time I decided to also do a VEST treatment. It's basically been a "catch up" day. It happens, especially when you've been gone for a week unexpectedly.

I am pretty proud of myself. After not being on IV's in over 2 years, I wasn't sure if i'd remember how to do some things, like take a shower 1 handed while trying to keep my arm covered enough to not get soaked. I wasn't sure if i'd remember how to inject myself with meds, or how to make sure I don't over due it(which is the hardest for me).

I am happy to report all that stuff has come back like second nature. I am a Pro at a 1 handed shower...and I am great at injecting myself with meds.
Some may think it's not normal to know how to do that & to be comfortable with that, but it goes with the territory. While I'm administering my meds into myself I cant help but think, no other person probably will ever go through this or understand what im doing, but in my mind I know that this is  my "life", this is the only way for me to get better faster, and its what I have to do to stay healthy; and no it's not "normal" but to a CFer...its our lifeline.

Well there's not to much else to report...things are so far going good at home. I have nothing pla

Sunday, September 28, 2014

Hospital-Day 6 & Home

I'm home!!! I'm very happy to be home with my BoBo. I'm on home IV's but that's the least of my worries. After I got discharged my first stop was the pet store. I had to buy my baby a present...and I ended up buying him a new harness, and collar. In my defense they were all on sale. Then we stopped at the grocery store for food. Then home. The home health nurse came showed us how to do meds(we know but it's protocol). 
It's great to be home...I'm currently on VEST I have an IV at 10:00 then bed. 
I was thinking about this yesterday and today...only a CFer can lose 5lbs(which is good usually when I'm sick I lose more) and Gain stomach muscles. Oh the life of having CF, but you know what: i love my life and I wouldn't trade it for anything!

Here's the table we set up for all my IV equipment: 

I also have 2 antibiotics; Zosyn which looks like this(my favorite IV type):
and levaquin(not pictured but I do it once a day and unfortunately it has to be hung on a pole).

Bo was also happy I was home: 
Well I will continue to update on my process at home. Thank you all again for the wonderful well wishes, prayers, texts, calls, and visits. It truly means a lot.

~God Bless

Saturday, September 27, 2014

Hospital-Day 4&5

Just a quick update yesterday I got my PICC line placed: 
My new accessory for the next 2 weeks or so. 
Discharge plan is for tomorrow late morning early afternoon. I'm excited to get home. I miss my baby, my dad has sent a few photos to me: 
I miss him, so when I get discharged the first spot is to the pet store to get him a treat, I know I'm a sucker for that face. 

Today is pretty chill as most Saturdays at a hospital are. I may have some visitors later. My one older sister came the other day and my other sister came yesterday and my dad has been stopping up. I also had some friends up. Its good to see everyone-the perk of staying local. 

Well I will write soon. It's almost time for a treatment and then a shower. 

~God bless 

Thursday, September 25, 2014

Hospital-Day 2

Day 2: not to much has changed. Had a few visitors today and yesterday. They ordered my PICC line placement. It was supposed to be put in tonight a around 5:30 but it got delayed until tomorrow around 11:00 a.m. This hospital is very busy with lots of stuff going around so there was an emergency that came in and was higher priority. Oh well, my temporary IV is still working good. So the plan is home IV's. Hopefully discharged Saturday or Sunday. Monday at latest. I will keep everyone posted with updates. Thank you all for the thoughts & prayers. They truly mean a lot. 

~God Bless

Wednesday, September 24, 2014

Hospital-Day 1

Day 1: I was admitted to the hospital. After going home from work again it was time to figure something out. So I didn't make it to my Thursday appt. 
I am now inpatient, at a hospital I've never been which is very close to my house and they don't know to much about CF but there is a pulmonologist here who has a 60 year old CF patient so I feel pretty confident. I'm on my strict VEST regiment, I am on 3 IV meds,(levaquin, zosyn, and another med that starts with a V, I can't really remember) but it seems to be working so far. I can already feel stuff moving around. Tomorrow I'm possibly getting a PICC line, waiting for results from culture then we'll discuss going home on IV's hoping to be home by the weekend. 
I'll keep u posted. Please also keep the CF community in your thoughts and prayers. Quite a few CFers sadly lost their battle yesterday. Very sad. Keep their families in your prayers. 

All my wonderful meds :) 

Will write soon. 
~God Bless

Tuesday, September 16, 2014

10 days...

Where has the time gone...the last time I blogged was May?!?! I guess time has gotten away from me. There's quite a bit to catch you all up on, so here goes.  Since May not to much has happened. I was staying busy this summer, and also staying "cool" since we had kind of a humid summer. I stayed in AC most of the time :) Then August came upon us...
In August I had my annual 3 month check up, and if you remember my post back in May(See Here), you know things weren't going great but they certainly weren't bad. Well fast forward to PFT's are currently down 9% in lung function. Which to some may not sound bad but in a CFer's life its not that great. I've gone from being a consistent 96-98% lung function down to 91%, yeah, you could say I'm not happy. Yes I understand warmer/humid weather does affect PFT's and will make them lower, but that is a significant drop. So my doctor still doesn't think anything is wrong, he says lets wait it out. Well I am not concerned even more so because I see my numbers slipping, and I know someone with lower PFT's than mine will probably say: "you're functions are good", but am not proud of my numbers. Now about a week ago my lungs started to feel even more tight than they have the last few months(and I have expressed my doctor with my concern and he says lets wait it off a little). So they put me on 3 cipro pills and 2 bactrum pills twice a day. That's a total of 5 antibiotics even before all my others. Well I took my night time dose, then morning, and I DID take with food. Well all those pills caused some kind of reaction with my stomach, I became hot/cold, dizzy/lightheaded, upset stomach. I.Was.Done! I literally crawled in bed and slept for 30 hours. finally after all that I started feeling somewhat better, and all I had eaten was chicken soup. then they decided to call in Levaquin(my Miracle drug). it does the trick ever.time. well at this point and am not willing to try any.more pills.
So I decide to do my research and get a second opinion. I found someone local who actually does deal with CF patients(that's a first for the area I live in), so I had an appointment today. I gave her my last PFT's. she wasn't to happy with them. She totally understood my frustration, and we discussed a game plan. I have 10 days...10 days on 750mg of Levaquin, 1 pill once a day for 10 days. If I don't feel any better by 10 days when I go back to see her, we will be doing a chest X-Ray and a admission....if anyone has remembered I haven't been in the hospital in over 2 years...for some reason oral levaquin doesn't always work, but IV always does the trick, we aren't sure why, she said it could be because CFers have a harder time breaking things down in their system and with IV it's more direct, and with that it's now down to 10 days...
Soooo that's where things are at lately. Kind of a long update. I apologize. I will try to not take so long with updating next time. I will try to post and let you all know the decision after my appointment next week.

I hope everyone's doing well and enjoying this Fall like weather we've been having.

~God Bless