Sunday, January 30, 2011

Bedroom party

One evening last week, while I was hooked up to Mr. Medicator, my sister and three cousins came over and we had a party in my bedroom. BTW, I'm getting pretty good at operating this thing!

I forgot to take a picture of my sister (sorry Mary Beth!)...see her, she's there beside me on the bed.

Look at our spread! Bagel bites, tator tots, veggies, cheese and crackers, pineapple and the most wonderful raspberry New York cheesecake...and I might add directly from New York, as Gail's hubby had just come home from there. It was to die for!

Of course, my little Mickey had to be in on the fun!

Karen and Gail...
Karen just got back from a cruise, so we heard all about that.


Not only did we eat and talk, but Karen, Brenda and Gail provided entertainment for the evening! They are taking line dancing classes, so we got some music on my Ipad and they danced...even though there wasn't a whole lot of room.

They're really pretty good!!!

It was a fun, friends and LOTS of laughing...major serious laughing.

A great way to pass my IV time!!! Thanks guys!

After all, friends ARE the best medicine!

Saturday, January 29, 2011

Another week

I had an appointment today at Akron on Thursday, and it was decided that I need to be on the IV antibiotics for another week, plus they added a third IV med to the mix. I was also sent over to the Picc team at the hospital, because I knew my Picc was starting to feel a little blocked again, the meds went in ok, but it was more resistant to flushing. So they checked it out and used Activase and it busted up a partial clot. My lung function has not really changed in all this time...pretty disappointing! Hopefully another week will do the trick! Friday afternoon, the cf clinic called wanting me to repeat another blood draw, because it showed my creatinine level was high. So I did that here in town...the level was still high, so they pulled me off the one drug, tobramycin that could be causing this. (Creatinine has to do with your kidneys). So I'm just on two again and go back on Thursday afternoon...hopefully to pull the PICC!

In the meantime, W is sick with a cough and fever, missed two days of work. So he has pretty much banished himself to the basement bed or couch in the living room. I have stayed upstairs a lot. When I do go downstairs, I wear a mask. I wiped down the kitchen counters, door knobs, refrigerator handle, etc. today. And when I'm upstairs, we've been communicating by texting each other...he just learned how, so it's good practice!

Saturday, January 22, 2011

Some snow and less bumpy...

On Thursday afternoon, we got some of this.

Yesterday, it looked like this...
I loved watching the snow fall on Thursday! I was soooo happy that I didn't have to go anywhere too, like to Akron!! Since I've gotten the new PICC line on Monday, things have been going much smoother, I haven't had any blood clots or bends with this one. I've been able to get my meds consistently now and I've been in a routine...finally! My home nurse came Tues. morning to draw blood and check how everything is going. I did have to go to Akron on Wednesday for a check. My pft's (lung function) was still down, in fact even a little more than a week ago. I go back again for a check next Thursday. So I don't know how long I'll be on the IV's...we'll decide then. Yesterday morning, my cf nurse called and said they wanted a redraw of the bloodwork from Tuesday, since it showed my potassium level was elevated. They faxed an order and I went to the lab here in town. If it's still high, then I'll have to be treated for that. Of course I googled "high potassium levels in blood" to find out about that. I won't worry yet though, till I find out if it's still high or not. Plus, I have a lot of confidence in my cf team and feel like they're taking good care of me! I'm still feeling quite tired and nap a lot, but my chest is feeling MUCH much better and the biggest thing is I'm not quite as short of breath...that part was really bad the last couple of weeks! So the IV's are definately starting to help...hoping for smooth sailing the rest of the way!!

Friday, January 21, 2011

God Will Take Care of You

I saw this on facebook today and I thought it was WAY too cute! This is a family singing in church with their little boy, who is around 2 years old. A child is never to young to sing a joyful song unto the Lord!

Monday, January 17, 2011

Some bumps in the road...

I've been doing IV's now for a week and it has NOT gone smoothly! First of all was the bend in the picc line that the picc nurse fixed. Then on Fri. evening, I wasn't able to flush my line to get started and a nurse had to come out armed with Activase (a clot buster) and sure enough, it was a blood clot in the line. Last night, once again, I wasn't able to flush the line. I called the nurse who told me to call my doctor who told me to wait until today and go in to the picc center. So I completely had to skip my meds for the second time in a week. And today was my third trip to Akron in a little over a week. The picc nurse couldn't flush it either and we decided to go ahead and put in another picc. They were able to take it out and put another one in the same place, a little uncomfortable, but not too bad. There was a clot in the line... you could see it in the part she pulled out. I've just never had trouble like this before with IV's. I did my IV's this evening and it went fine...hopefully things will go better now, so I can be consistent with the meds. One bumpy week down...

Thursday, January 13, 2011

My new buddy

Well, the next day after resolving to try to stay healthy, I got sick. Yep, Jan. 2...fever, chills, cough, shortness of breath. I called the cf center after a couple of days because it wasn't getting any better and they had me come in. My numbers were all down, pulse high, sats down and they decided to send me over to the hospital to get a Picc put in. Luckily I could do it right away. Needless to say, it was a long tiring day. My meds were delivered at home the next day, and a nurse was scheduled to come Sat. morning to start the IV's. This time, because of the one medicine, I am not getting my handy dandy little portable IV pump, it's a regular big hospital pole machine thingy. I freaked when I saw it! Oh man, now I'm not only sick, I have to think and learn how to run this big sucker. After the Sat. session with the nurse, I was still confused, so she came back Sun. morning. I felt better after going through it again. When I tried it Mon. it kept beeping and I finally figured it out the problem. With the next one, I forgot to close off the line before I hooked up to the med and got tons of air bubbles. Stress...Tues. I got everything ready and all was going well, but I couldn't flush my line. Nope, nada. My SIL came and tried. No. So I called the nurse. They sent someone out, thinking I had a clot in the line and she brought a clot buster med to put in the line...she wasn't able to really get any of it in, so she called my dr. and they said I'd have to back to Akron the next morning and prob get another Picc put in. Oh man...stressful thought!!

My friend Gail was going to take me yesterday morning, but it was snowing so much the hospital and my dr. said I could wait till the next day. But it did quit and we decided to go in the afternoon, so hospital said ok. The roads weren't as bad as we thought they'd be. They did an x-ray of my picc arm, saw no kinks. The picc nurse (who usually is the one who puts mine in) was going to numb me up for another one, then she looked at the x-ray one more time and saw what she thought was a tiny bend near the beginning of the Picc. So she took off the bandage and moved it around a little without pulling it out and then tried to flush it and it WORKED!! We cheered! So she is totally my hero right now! They did blood work and sent us on our way...We got home and Gail stayed while I set up my IV stuff and I did it very slowly, but it went without a hitch...

So far, today has been wonderfully peacefully uneventful. No nurses, no going to Akron, the IV-ing went well, no stress. At least for today!

And now, here's my new buddy, and although I'm not really enamored with him, I'm depending on him to get the meds into me to get me well again! Seems like he needs a name...

Saturday, January 1, 2011

Happy New Year!

It's 1/1/11...and the beginning of a brand new year! Wishing everyone a happy, healthy New Year!! My resolution is to try to work hard to stay as healthy as possible! Cheers!!