Sunday, November 24, 2013

Pulmonary rehab and health update

This past year I have taken a bit of a hit health wise. My PFTs (lung function) has fallen to and been stuck at barely over 30%. So my drs decided I needed to be doing pulmonary rehab. Whether or not my lung function would come up or not, they thought it would at least help me feel better. I started having to use O2 at home with exertion about a year ago, and I needed O2 to do rehab.There is no place really close, so I have to go to Wooster hospital, about a 40 minute drive. I started the program the first of May...it's a 3 month program/3 days a week. The program consisted of a workout on the treadmill and two kinds of bikes, 15 minutes each and then a 30 minute education time. Three others were in my class with me...two with COPD and the other with alpha antitrypsin, another lung disease. My pulse ox, heart rate and blood pressure was monitored all the time while working out. I "graduated" the end of July, but have kept on going, doing their maintenance program. In Sept their policy changed that all maintenance people could only go 2 days a week on Tues/Thurs. I'm now doing 30 minutes on each machine. It's also nice to be around some others who need O2 while exercising...kind of like a support group. I do feel like even though it takes a lot of time out of my day on Tues/Thurs, it has helped me feel better overall. I had a couple of bad lung bleeding issues (hemoptysis) last summer, but that hasn't happened since. I was on IVs for 3 weeks towards the end of June...so it's been awhile since I've had to do them. We spent the last two weeks of Oct in Florida. The weather was awesome and I felt really good! My PFTs actually were the highest they'd been in almost a year at my cf appointment when we got back. Lately, I've been coughing more and my lungs feel achy sometimes.  The weather does affect me. I'm hoping I can make it until after Christmas before needing IVs again. But I take it one day at a time...

Friday, November 22, 2013

My Sweet Meg

My uncle in Fla informed me that it's been quite awhile since I've blogged...he said May 24th. I knew it had been awhile, and when I checked, yep, it was May 24th. I've turned into a not so bloggy blogger. I'm not dying or dead...I've been busy, tired, unmotivated or just plain kind of forgotten about blogging. So Ward, I'll try to do better for you. I will post a health update very soon, I promise, but my first post back has to be about my sweet little Meg, also known as Meggie, Meggie Sue or Meggle Sue. Meg was definately THE smartest dog we ever had. She understood everything we said, communicated to us what she wanted, did a ton of pretty smart tricks and we were sure one day she'd start talking to us.

 Meg, a toy poodle was born in May of 1997 and lived with us for 16 years. She was just part of our family. And no, a dog is not like kids or grandkids, but they can be pretty special too. To begin with, Warren didn't really want to deal with a new puppy at that time, but he ended up completely falling in love with her and she went for many walks with him and he tossed a ball or they played every evening. She always got so excited when he came home from work. Meg would always bring something like a ball or hair band or whatever she found on the floor, drop it by your feet, then quickly scamper and hide until you kicked it, then she'd dash after it. She loved this game, playing it relentlessly. She also loved when I'd tell her to go into the bathroom, then I'd hide small treats and she'd come out when I called her and would sniff them out. She loved games.

Meg started slowing down the last couple of years and would mostly lay around. She couldn't hear very well anymore and got cataracts and couldn't see much anymore. We kept our furniture in the same place and she knew her way around, occasionally bumping into something, but not too often. She knew her way around outside too. Towards the end of Sept. she started getting really sick...her liver was failing. The vet tried IV's over the weekend, but things were just not going well. It became clear that it was time to let her go. Sooooo hard! So, on Sept. 30, Warren came home over his lunch break and we both took her up to the vet. They were great, left us alone with her awhile and we told her how much we loved her and that she was the best dog ever. I told her I was so sorry. I wrapped her in a blanket and held her while she passed into her final sleep. And I cried. And cried.

 Life goes on. We have lots of pictures and lots of great memories of Meg, always in our hearts...






Friday, May 24, 2013

Birthday date...take 2

 This time, he was feeling great and we decided to go to Mrs. Yoder's Kitchen in Mt. Hope, one of my favorite local Amish type restaurants.
We were kinda tired of going to McDonalds every year/per his wish, so we told him we're branching out. He loved it and said he wants to go there again kext year!


 He got to work on two dot to dot pictures.


 Plus he got some wiki sticks to play with. He made a dog and we made a butterfly while we were waiting for our food.





And we had mentioned to our waitress (who we know) that we were on a birthday date and at the end of our meal, 5 or 6 waitresses came and sang Happy Birthday to him. I didn't know this was coming at all. I thought maybe he'd be embarassed, but he did pretty well...I think he was proud of his cake. Oh, and it's a Litty's cake. If you don't know anything about them, they are DELISH!


So we took the cake home and ate it ourside on our patio...Yum!
This birthday date was a success!

Thursday, May 16, 2013

Birthday woes...


This little guy turned 5 last week...so hard to believe! It was a bit of a rough birthday though. First of all, ON his birthday, Jeremy, Steph and the boys were going to Quaker Steak to eat. They just walked in the door and Kayden threw up all over the floor. So they ended up going through a McDonalds for Perrin to get a happy meal.  THEN two days later, we took Perrin on his birthday date. We just pulled into the parking space at the restaurant and HE threw up all over himself and the car. No warning whatsoever. OK, so we tried to clean him up and the car, washed the car seat, put him back in and wrapped a blanket around him and headed home. No birthday date.


We had a little celebration at our place a couple of nights later...


He got a bike helmet...


a leap pad game and a wii game...


and all is well again. But we still owe him a birthday date.

Wednesday, May 15, 2013

CF awareness...Breathe


Matt Scales wrote this song. Sadly, he died from CF in 2007. The song was remade by three fellow CFers. It's about finding a cure so people with Cystic Fibrosis can breathe like everyone else. You can see Matt towards the end of the video.

Here are the lyrics to the song, Breathe:
Breathe
By Matt Scales

Through my eyes
I see you
Staring at me
All the time.
So I wish
That it would leave
My body.
I wish I could breathe
Like you, oh, breathe
I know the answer’s out there.
So won’t you help me, please?
Chorus:
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
I see the future.
It seems so clear.
That one day I’ll breathe like you.
Then I think that
I’m all right
But it keeps changin’
Like the weather.
It’s not up to me
How I feel
How I feel
Inside.
I wish I could breathe
Like you, oh, breathe
I know the answer’s out there.
Won’t you help me, please?
Chorus:
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
I see the future.
It seems so clear.
That one day I’ll breathe like you.
I wish I could breathe
Like you, oh, breathe
I know the answer’s out there.
Won’t you help me…please?
Cause one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
I see the future.
It seems so clear.
That one day I’ll breathe like you…like you.
Original “Breathe” Composition © 2001 Matt Scales and Barnaby Pinny

Tuesday, May 14, 2013

Spring Spring Spring!


Taking a quick break from the CF awareness today to focus on Spring. I have been SO ready for Spring. The only bad part is the changing weather...warm/cold plus pollen levels makes me extremely wheezy! I went walking around the outside of my house and just snapped a few pictures. I wish all these things would stay blooming all spring and summer, but they don't, maybe we'd take it more for granted if they did. If you know me at all, flowers and flowering things make me happy. I couldn't live without flowers! Seriously...Well, I can always come back here and look at the pictures when they're done blooming. 



The lilacs smell so amazing!


This bleeding heart is a starter plant from my Grandma. As a kid, I was always amazed at these...couldn't imagine how a plant could grow hearts.







Forget me nots always always remind me of my mom...




My strawberry plants are blooming right along. We did have to have them covered the last couple of nights because it did frost.



Ahhh, and the blueberry bushes...loaded with blueberry blooms...I. Can't. Wait.

Saturday, May 11, 2013

CFAwareness...Great Strides Walk 2013


Walk today. Add tomorrows. Great Strides is the Cystic Fibrosis Foundation's largest national fundraising event. Every year, usually in May, there are Great Strides walks all over the United States to help raise money through the CF Foundation, who is working hard to find a cure for CF. In 2012, nearly $40 million was raised to help support life-saving research, quality care, and education programs. Real progress toward a cure has been made, but the lives of young people with CF are still cut far too short. We urgently need the public’s continued support to fulfill our mission and help extend the lives of those with the disease. Here is my team in the Great Strides walk last Sunday...Miles for Marcia....THANK YOU everyone who came to walk (or ride scooters) on my team and for donating to help find a cure for Cystic Fibrosis! Our walk raised over $41,500!!! It was a beautiful day to walk on the trail and there were a total of about 350 participants from our county.


And I think we brought up the rear of the walk. Here's my dad, Gail, me and Sue. Gail was nice and carried my O2 for me! I think Gail and I maybe made it a mile total. The whole walk was 6.2 miles.


Tiffany and Aila being silly...


Stephanie, Perrin, Aila, Kayden and me. After the walk, there was a victory party with pizza, fruit, cheese, chips and cookies. 

Thank you for supporting the Holmes County Great Strides Walk!
Our Initial Fundraising Total is over $41,500!
  
Many thanks to all those who came out to the walkon Sunday!  Your support has made 2013 a GREAT year for the Holmes County walk! For those of you who were not able to attend or have more contributions coming in- it's not too late to turn in donations. With your continued help we can surpass our goal!
  
Your supporters can still make their contribution online or send donations to:
CF Foundation - Northern Ohio Chapter
5410 Transportation Blvd., Suite 5
Garfield Heights, OH  44125 

Thank you again for your support in 2013!  Your participation allows the CF Foundation to take the necessary "steps" to help find a cure.
  
Together, we can and will make a difference!
  
Until there's a Cure,
  
The Northern Ohio Chapter
Great Strides Team
  

Wednesday, May 8, 2013

CF Awareness...How do you get Cystic Fibrosis?


Cystic fibrosis is a genetic disease. This means that people inherit it from their parents through genes (or DNA), which also determine a lot of other characteristics including height, hair color and eye color. Genes, found in the nucleus of all the body's cells, control cell function by serving as the blueprint for the production of proteins.
To have cystic fibrosis, a person must inherit two copies of the defective CF gene — one copy from each parent. If both parents are carriers of the CF gene (i.e., they each have one copy of the defective gene, but do not have the disease themselves), their child will have a 25% chance of inheriting both defective copies and having cystic fibrosis, a 50% chance of inheriting one defective copy and being a carrier, and a 25% chance of not having CF or carrying the gene.
There have been over 1500 CF genes identified. DeltaF508 is the most common one, some people have two copies of this, called double deltaF508. It has been difficult to establish a correlation between severity of the desease and inherited CF genotype, because there are other genes that also can affect CF disease. For example, CF siblings could carry exactly the same genotype from the same parents, one may die in childhood, the other might live well into adulthood. So it's complicated, other factors enter in. My genes are deltaF508 and 3601-17T>C.

Sunday, May 5, 2013



May is Cystic Fibrosis awareness month. So here's to some awareness! Exactly what IS Cystic Fibrosis? Here is some CF 101 from the Cystic Fibrosis Foundation. Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that: clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond. Symptoms of Cystic Fibrosis... People with CF can have a variety of symptoms, including: salty-tasting skin; persistent coughing, at times with phlegm; frequent lung infections; wheezing or shortness of breath; poor growth/weight gain in spite of a good appetite; and frequent greasy, bulky stools or difficulty in bowel movements. Statistics... About 1,000 new cases of cystic fibrosis are diagnosed each year. More than 70% of patients are diagnosed by age two. More than 45% of the CF patient population is age 18 or older. The predicted median age of survival for a person with CF is in the late 30s.

Monday, March 25, 2013

Beautiful Spring Morning

Yes, this was a beautiful thing to wake up to. The pictures really don't do justice! I do love snow, however I really am ready for a for real Spring. I love the warm weather, bulbs blooming and flowering trees...flowers just make me happy! Actually, seasons make me happy. But the up and down weather we've be having doesn't make my lungs happy and they started behaving badly this weekend...lung pain and fevers. Sooo my Dr. is putting me back on home IVs tomorrow. Geesh, I've only had five weeks of "freedom". (big sigh) But oral antibiotics dont really work for me anymore. Guess I'll go back to reading books, watching some movies and maybe by the time I'm finished with this course of IVs, Spring will have sprung...