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...



Tuesday, February 19, 2013

Freedom


Last Thursday morning I woke up to this little face giving me a good morning look.


And then I saw some pretty flowers on the dresser, some candy too. Yum, nice way to start my day!
And yes, it was Valentines Day...we generally don't really celebrate it, but we did get engaged on Valentines Day many years ago! I found a ring in a box of long stemmed roses that day...


We had to get moving as I had a clinic appointment AND my IVs were stopped. Time for a break! My PFTs  really haven't changed and my Dr think it's my new baseline. He doesn't anticipate them really going up. It really does make a difference when they're under 40%...however, I definately am feeling better than I did five weeks ago, and I'm breathing better...so that counts too! It's not always about the numbers. But now its a challenge to me to get them up! It was a rough five weeks, but I'm slowly coming back, although I do feel pretty fragile yet! I have gained a few pounds (I'm sure with the help of prednisone)...I want to eat all the time, especially dark chocolate sea salt caramels. So I just do it! We have a new frozen yogurt place in town that I've been hearing good things about...can't wait to try that out! I took a most wonderful shower the next day (with O2) Best.Thing.Ever! That's always the best thing about having your port de-accessed! Hubby is still struggling with his issues, I can't wait until his appointment with the gasterontologist in a couple of weeks! He is slowly going back to work a few hours a day. I like having him around a little more, but he needs to heal and gain weight back!

Wednesday, February 13, 2013

All wrapped up and snow

The night before I went into the hospital, Jeremy's family came over with a wrapped gift. What?? They said it was an early Mothers Day gift and they decided to give it early because I hadn't been feeling well, so they thought I should have it now. I opened it and it was this beautiful big soft throw with pictures of my family on...how cool is that? Nothing like being all wrapped up in your family! I put it on my list of things to bring to the hospital when I was admitted....It was a great conversation piece for the nurses! I spread it out across my bed at home to take the pictures, which didn't turn out great at all with the lighting, but you get the idea...it's nice to cover up with during the day when I'm resting.





Beautiful roses sent from Florida from Dad and Sue. Thank you guys...I thoroughly enjoyed!


 Last week we had several inches of snow...the littles wanted to come shovel snow for us. It was fun watching them "working" so hard. I made them some hot chocolate to drink outside.


Cute little faces...

Friday, February 8, 2013

5th week

Yesterday was a CF appointment, across the street from the dr  I saw the day before. Two trips to Akron back to back were a little exhausting! JoEllen had taken me and she came back and watched me do PFTs. My highest was 38% FEV1 .89L. I was wheezy again, and it was decided to do one more week of IVs. Also more prednisone...I've only been off of it for five days! I was a little bummed because I've never done IVs longer than four weeks, so I was expecting to have my port deaccessed. And I was picturing a lovely shower. Instead, port needle was changed, bloodwork done, and meds delivered for another week. Well, I'm just thankful I can do them in the comfort of my home! During my appointment JoEllen went to the hospital cafeteria to get something to eat and got me some oatmeal raisin cookies...they were the best part of my hospital stay. I probably ordered them about every day. Wish I had the recipe! Cant wait till I feel like baking again! But for now, I'm more into resting and napping.

 Warren is feeling better, but not great. I think it will take awhile. He is on several meds and a bland diet for now. He is going to try to go to work a couple of hours in the morning next week to see how it goes. He's not really too great at being a patient. I guess it's a man thing. What a crazy month this has been!

And now I see they're naming winter storms...Used to be blizzard of 78 or whatever. Now we have Nemo...a cute little fish name storm.

Wednesday, February 6, 2013

Home

Warren is home and I am very happy he's back! Jeremy brought him home as Stephanie and I were leaving for a dr appt...so our paths crossed fleetingly. He had a colonoscopy and scope done yesterday which showed that he has some very impressive ulcers in his colon. The dr said he's not seen anything like it in years! He didn't know how he could even have been eating anything, period. They did biopsies to see the type of ulcers. Also the scope showed acid and gas in stomach and bile leaking in too, causing problems. He's being referred to a gastroentologist and has an appt in a couple of weeks. Of course I'll be researching all this over the next few days.

I saw my immunologist today and had bloodwork done to check IgG levels and t-cell levels to see if  my gamma gard treatments are helping or if I'll need to increase dosage. Tomorrow is a CF appt and I'll probably get deaccessed and will stop IVs, I usually don't do more than a month at a time. I've started losing my voice, just squeaking...my dr today thought it's probably a virus. That's it, SOOO glad we are both home together and hoping he takes it easy for awhile...he's not too good at doing that!

Sunday, February 3, 2013

Oh boy

Now hubby is in the hospital. Jeremy took him to the ER last evening, he was in quite a bit of pain. He was very severely dehydrated so they started IV fluids, gave pain med, took X-rays, bloodwork. He ended up being admitted, is on two strong antibiotics and fluids. He can't have anything at all to eat or drink. Morphine for pain. His intestines need to heal! Quite the pair we are right now!

I had a CF appointment on Thurs. my PFTs dropped again just a little...I was hoping to get higher than last week, but just didn't happen. Maybe because I haven't been using O2 as much? Also, my appt was pretty early, I didn't get all 5 nebs done before we left. I'm still on IVs until my Thurs appt, then I'll probably be done for now. Overall feeling better, just slow to do anything. Not that I do much now anyways. I'm going to have someone take me to see him in the hospital this afternoon between my IVs.

Lindsay's doing her clinical boards today...I keep thinking of her too!

Wednesday, January 30, 2013

In sickness and in health...

...part of the vows we took many years ago. My hubby has sure been there for me through many many sick times, hospitalizations, surgeries, tests, treatments, etc. He has been a great caretaker when I've needed him to be! And of course we've had some great healthy times mixed in there too!

 And now he has some health issues of his own...and he's NEVER sick! The last couple of months he's been having some stomach issues and lost 10-12 lbs...which he doesn't need to lose. This past weekend he scared me, having severe abdominal pain and he felt so bad, he actually did see the dr Sat morning. They did bloodwork, urinalysis, etc. He was miserable all weekend. We both just hibernated in bed all weekend. Monday they called and said his white blood count was quite high and scheduled him for a cat scan later that morning. I needed more X-rays of my legs for my new rheumatologist, so we both were out at the hospital at the same time registering for X-rays and scan. It struck us as comical actually. Later that afternoon, the dr called and said the scan showed diverticulitis and colitis. No masses. We were happy it's something very treatable! He has to be scheduled for a scope (upper) and a colonoscopy. He is taking off the next 2 weeks of work to recuperate a bit. He started on antibiotics and he is not in nearly as much pain as the weekend.

 I've had more kidney stone pain, so had made an appointment with my PCP this morning, although the pain had stopped last evening. There was blood in my urine and she sent me over to the hospital for a cat scan. My dr called later today and said there was no evidence of the 5mm stone, so I must've passed it last night when pain stopped. There are several others in the kidney that are 1-3mm in size. Now I'm a kidney stone machine...

Tomorrow morning, I have a CF appointment...hoping PFTs are still as good as last week. I just dread doing them so much!

A final note...my niece Lindsay (a great basketball player in high school and college) was playing a little 3 on 3 and she tore her achilles. She had surgery the week I was in the hospital. She and her hubby are in their last months of dental school at OH State and they need to do their state boards this weekend. They have to spend a whole day with patients, with the profs watching every move. She is in a cast and has to use this little scooter thing to get around, so we are praying she can get through this tough weekend...any prayers would be appreciated!

Friday, January 25, 2013

A little backset and progress

Ive been home a week now. Hubby got a small frig for our bedroom so I can keep my meds and IVs in without having to go up and down stairs...it has been great! I was having some stomach/heartburn/throwing up...not being able to eat or even drink. I checked my pills and realized I was out of Prevacid, which I've taken for years. With the hospital admission and coming home in a steroid haze, I didn't realize I wasnt taking them after I got home. (was in the hospital).I lost 8 lbs in the past week...yikes! But as of yesterday, I'm back on them and I can eat again!! Truly a magical pill! I had an appointment with a new arthritis dr in Akron on Wed. It's a second opinion...she took 17 X-rays of my hands and back and 9 vials of blood. She doesn't think it's rheumatoid, but osteoarthritis or cf related arthritis. She changed plaquenil to Celebrex it was an exhausting day and I used O2 the whole time. Yesterday was a CF appointment. I felt like I was breathing better, took O2 along...but didn't need it if I walked slow. They de/reaccessed port...IVs for another week for sure. But the best part was that my PFTs were at 42% and .99L. I was proud, amazed, thrilled! I haven't been out of the 30s in months. Now I just need to eat and get some strength back again! Next CF appointment is Thursday. I'm praying for more improvement! Oh and enjoying our pretty snowfall today...

Monday, January 21, 2013

Quite the week

I've been hanging out in the hospital for the last week. I came home Fri.afternoon. It all started the first week in January...kinda tired, some hemotopysis, shortness of breath. I was short of breath even with O2. It's a very panicky feeling. I called my cf center, went in for appointment a day later on Jan 10. Within a very short time I was immediately admitted. The left side of lungs had no air moving through and right side completely wheezy. Just. Couldn't. Breathe! They started very aggressive treatments of massive iv steroids every 6 hrs, antibiotic Ivs, aerosols every 2 hours round the clock, four hand percussion treatments a day. I had no sleep for two days/nights. As I laid there awake from the steroids, I totally redecorated the room in my head...tearing off border, repainting the walls, cleaning, scrubbing etc. By the third night they tried two different sleep meds and I could get some snatches of sleep. And breathing easier.

 Tues morning I woke up to some back pain. I thought I laid wrong in bed, but it kept getting worse and worse around the side. I'm thinking surely not a kidney stone...they gave me some morphine and sent me to X-ray and sure enough a 5mm stone. An ultrasound was done later that day to make sure kidney wasn't swelling. I was started on fluids in an attempt to flush it out, but as of now, it's still in there somewhere...maybe moved to an undetermined hiding place. At least its not hurting for now.

 Wednesday night event...I broke out in shingles. This has happened before when I've been sick and I've had the vaccine. So acyclovir was added to meds. Body, just give me one uneventful day!

Thursday I got an IVIG treatment. My port was deaccessed in the afternoon so I had a window of time in which to shower before it was accessed again. I was scared to try it, but I used a chair and O2 (which sounds so pathetic) and it went ok. I was exhausted but quite proud...and clean! Friday late morning I had another ultrasound, then did pfts. They were the same as when I was admitted, so I was disappointed...but at least they stayed stable. I was discharged a few hours later. It felt a little scary, yet I was so wanting to be back home! My home iv meds arrived very soon after we got home. 
So I'm just settling in here with my Ivs and O2 when I'm up, which so far is not a lot. Hope to get 
stronger each day. Baby steps... 

 From my Jesus Calling devotional today... Your security rests in Me alone...not in other people or circumstances. Depending on me may feel like walking on a tightrope, but there is a safety net underneath: the everlasting arms. So don't be afraid of falling. Instead, look to Me. I am always before you, becoming on-one step at a time. Neither height nor depth, nor anything else in creation, can separate you from My loving Presence.