We are getting ready to leave for Florida...we're ready for some relaxing time after this bizarre summer of mine.But we are heading right towards the tropical storms Gustav and Hanna!!I guess everything depends on how and when they hit.I checked the extended forcast and it showed rain every day next week...sigh.Oh well,it will still be relaxing,I'm sure!My hubby and son are leaving this afternoon and driving down.My daughter-in-law and I are flying tomorrow with their two babies,ages 3 mo.and 21 mo...can you say exhaustion???AND we have a layover in Atlanta.I will be taking all my meds,vest,nebulizer along,but the guys are taking it,so it'll be a day and a half without any of that.I feel like I'm stabilized enough now that I'll be OK,but things can change so quickly.So please pray for traveling safety for all of us and that I can have enough energy just to get there!!
Today was a good day at clinic,even though it was a long day with all the driving.I am still getting used to this whole team approach to medical care...very different from anything I've ever had before.As soon as I get in the waiting room,I have to purell my hands and mask up.Every CF patient has to do this because of cross-infection because of the bugs in our lungs,in my case p.aeruginosa.Clinics are careful with this because they have found that social contact between those with CF,even casual contact at clinic,can lead to the spread of infectious organisms.
At clinic,I get weighed,vitals taken,pulse oximetry measured,have PFT's done,physical exam and bloodwork.Today my primary time was with the nurse practitioner.My PFT's DID go up just a bit,not much,but I'll take it!!!Thank you for your prayers!Last Jan.was my very first pulmonary function test and it had fallen about 15% since then,so my goal is to get it back to that number if possible.I am tapering off the the prednisone now over the next several days.My lungs had just a few crackle sounds on the left side.
I saw the social worker who talked about a second insurance carrier,so I had those forms to fill out.Then someone else came in to talk about consenting to be in the CF data base and about participating in research trials at some point.They explain everything so well and take a lot of time for questions,etc.The whole clinic visit was 2 hours and I never had to wait more than a few minutes between all of these people coming in the room.
All this time,Brenda King was sitting in the waiting room,stitching a penny rug,waiting for me.Next we headed to the ENT office for my next appt.THEN the best part...Wally's Waffles!!!SOOOOOOO good.It's a little place across from the hospital that I highly recommend!!!
My health problems began at birth.At age two weeks,I had surgery for pyloric stenosis,which causes severe projectile vomiting.During my early childhood,I was sick a lot from bronchitis and sinus infections and I remember being treated for allergies.When I was 5, I had my tonsils and adenoids removed...I had tubes put in my ears several times because I would get fluid behind the eardrums.The tubes helped for awhile,then they'd come out and it would happen all over.This recurring sick stuff went on through high school. People I didn't know always asked me if I had a "cold" because I coughed a lot and sounded congested. I remember one time my chest started hurting while at a basketball game.It kept getting worse and worse.I didn't want to make a big deal about it to my friends,but it was hard to concentrate on the game!I made it through the game,told my friend to go get my parents (they were there too).It was hard to breathe.It was a severe infection in my pleural wall.I used to get pleurisy a lot too.
First two years of college went fairly well...then the summer after my soph year,I got very sick,throwing up,severe stomach pains.I was in the hospital almost a week doing tests and getting worse.Then I was transferred to another hospital.They had been thinking it might be a gall bladder problem,but it turned out to be a bowel obstruction.There were also a lot of adhesions everywhere from the pyloric surgery.I almost ended up with a colostomy.My electrolytes were off balance because all of the vomiting for so long,that my heart went into v-fib during surgery and I was "coded".Fun stuff!!....After that surgery,I started realizing that God must really have a purpose for me here on this earth.
I graduated college with a degree in elementary education and got a job teaching Title one reading back home.The following year,I taught first grade.I did have a rough bout with pneumonia during my second year of teaching.But for the most part,things were going well...I had met Warren and we were engaged.Then one evening in mid-May,we were coming home from a concert and I started getting sick and stomach pains again.He took me home and sure enough,I was in the hospital the next day and it was another bowel obstruction,so surgery again.And I was getting married in 6 weeks!!I was working on wedding stuff from the hospital!God gave us a spectacular wedding day weather wise...it was an outdoor wedding at my parent's house.Little did my poor husband know what he had gotten into by marrying me!!!More surgeries were to follow over the years.He has hung in there with me though,we just celebrated our 32nd anniversary in June!
I do have the best friends!!This morning I found out that the 8 dozen ears of corn I had ordered was ready to be picked up.I had kind of blocked out the thought that I had ordered it,thinking maybe because the weather has been so dry,there won't be enough corn...Sigh...Even though I do have more energy,it seemed like such an effort.Even just 8 dozen.BUT,enter my friend Pat.She had told me last week that I should call her and she will help me do it.Well,I thought,this is really impromptu and I didn't even know if she'd be home,but I bravely called her and of course she said yes,she'll be right over.So she came and now I have 25 bags of corn in the freezer...I am tired,but I couldn't have done it myself without being exhausted.Pat is an amazing and giving friend...I guess I just know how to pick friends!!We had fun talking while working and took a couple of breaks for sweet rolls and later I made smoothies.I wish I had taken pictures to post,but I didn't think of it till later.Thank you,thank you Pat!!!!
I must say I am feeling the perks of the prednisone!!I actually have some energy!!!I had to force myself to rest awhile this afternoon.I overdid it a bit yesterday,so I was more careful today.But it is so great to feel better...hard to "waste" my time lying around when I feel like doing something.The downside of steroids is that it is more difficult to sleep at night.But right now,I'll enjoy the extra burst of energy!!Hopefully,it will help my lung function go up too!Clinic appointment is coming up next Wed...gotta get those PFT's up...
Another thing that is feeling better is my joints.My knees,fingers and shoulders started hurting early this summer,it was hard to do much comfortably.Now that has somehow resolved,the pain is gone!I think joint pain is related to CF,more questions for the doctor on Wed.
Well,I'm done with my vest and nebulising...should I go to bed or clean the house???
Following my bronchoscopy and being "retired",I settled into my new routine at home.It WAS nice to do things at my own pace and not feel rushed to get things done.My health stayed about the same during that year. I was on periodic oral antibiotics and prednisone as usual for my "bronchitis" flare ups and sinus infections.One of my best friends was diagnosed with breast cancer that year and she was off work most of that same year.We have been friends since a Bible study post-high group after college and were teachers at the same school for the last several years of my teaching career.I went with her to some of her doctor or chemo appointments,sometimes we made our appointments on the same day.I will honestly say,she helped me so much through that year...tears,concerns,but also LOTS of laughter!!!!We had many adventures that year,truly unforgettable fun times!!Laughter is the best medicine!She is such a good caring,compassionate friend and her sense of humor keeps me going!She was able to return to teaching part time that spring and has been back to full time ever since.I'm happy to say that she is now a cancer SURVIVOR and is doing quite well,though fatigue is still an issue.My prayer is for her to stay healthy and we can continue to have more "adventures!"
Today is the first day of school in our district.And I will have to say,I'm glad I'm not there!I taught first grade and Kindergarten for many years,although most of the Kindergarten years,I was able to teach only part time...which in our district is two full days one week and three the next.The kids, parents and staff were great to work with and while I did really enjoy it... THINK OF THE GERMS!!I quit working three years ago at my doctor's orders,even though he didn't know I had CF.I had been really sick,stuggling with going to school and he did a bronchoscopy (procedure where they suction and wash out the lungs) and afterwards,had a very serious talk with me.He showed me pictures of infection pooling in my lungs from the bronchiectasis.I missed the last couple of weeks of school and decided I do really need to concentrate on staying as healthy as possible.It really was hard and exhausting to teach,especially the last several years I taught.The coughing was getting worse...it was impossible to get through any kind of lesson or reading a book without a coughing fit.I went to school sick a lot.The first fall when I didn't return to the classroom,it felt soooo strange...I had to get used to it.But it was nice to be able to stop and rest if I needed to during the day.I didn't have to push myself to get things done on "my day off".My doctor did start having me use the vest percussion method and I was doing some nebulizing treatments.But I still wasn't completely comprehending how sick I really was.I was "used" to feeling like this.
I am still trying to wrap my mind around the fact that I have cycstic fibrosis,even though I have had it since birth.For someone to be diagnosed in their 50's is indeed rare!But in the research I have been doing in the last couple of months,I have found others online who were also diagnosed later in life.In reading,I have learned that CF is a multisystem disease with a range of symptoms and complications that can be similar to other diseases...asthma,allergies,chronic bronchitis,chronic sinusitis,pneumonia.In my 30's,I was diagnosed with bronchiectasis.I had surgery then to remove a good part of my left lower lung.I remember the doctor said how awful that part looked...and after surgery,I got pneumonia on the right side.That might have been a missed chance at diagnosis.There were probably many missed chances,as I have had many doctors and surgeries over the years.I think for the most part,I always "appeared healthy" and as I have just found out while having testing done three weeks ago,I am one of about 15% of CFers to be pancreatic sufficient.I do not have to take enzymes to help my pancreas digest food and absorb nutrients.I was told however,that this can change,so I will be monitored for this.Being pancreatic sufficient could have been another reason I wasn't diagnosed earlier.Pancreatic insuffiency can also cause CF related diabetes (CFRD),which I don't have.I do have gastro-esophageal reflux disease (GERD),which is common for adults with CF.I have actually been treated for this for several years.More to come on what led to my diagnosis...
AND,oh the freedom I have felt over the weekend...freedom from the every 8 hr.IV's...Our son,daughter-in-law and babies came Sat.and we went to a park for awhile...it was great going to church again on Sunday...and today,I got a few groceries and we went to a hog roast tonight.Fun to be out again!!I still have lots of treatments to do in a day,but don't feel quite so tied down.Please pray that I will regain more energy each day and that my lung function will begin to improve!! Thanks.
After 3 weeks of IV antibiotics,my picc line came out this morning.Yay!!It just came out like a piece of spaghetti!!Weird to watch.Although let me just say,having the picc was SO much easier to live with than having a regular IV.And a handy little access to draw blood from.I gained 3 pounds this week,oh my.But I was disappointed with my PFT's(pulmonary function test).They are down even lower than when I went into the hospital 3 weeks ago.Doing PFT's is HARD!!!The doctors are still figuring out the right meds for me,so they may be changing some things in the next couple of weeks.Ten days of prednisone was added as well as calcium.
When we got home this afternoon,everything was weeded and looked wonderful!!A HUGE thank you to my Yada Yada prayer group,you guys are great!!
I celebrated being off IV's tonight with my friends Gail and Karen...we had Winesburg pizza and Guerne ice cream.Can't get much better than that!
I have decided(or should I say JoEllen decided!) to start a blog to chronicle my CF journey.I had no clue that I was ON this journey until a couple of months ago,although I have had lung and sinus issues my entire life.I will tell my story in another entry...Right now,I am beginning my 18th day of antibiotic IV's.I am glad I can do them at home!!!I came home after one week in the hospital and have been on home IV's since that.A little more space to move around here!I will go to the cf clinic on Friday and hopefully the picc line will be pulled.I was hoping for that last Friday,but my PFT's were still down to where they were when I was admitted to the hospital.The last several weeks have been a bit mind boggling...I have definately had a crash course in cystic fibrosis and I feel like I have been properly initiated to the wonderful world of CF!!My days right now are pretty full of treatment time with 9 nebulized treatments,2 antibiotics IV's given back to back every 8 hours,using the vest 4 times a day and several stretching exercises.I cultured a bug called pseudomonas aeruginosa,(a typical CF bug)which I have learned cannot be gotten rid of,but they try to keep it under control.I am feeling better than I was before going into the hospital.The acheyness in my chest is getting better and I'm not coughing so much,which is amazing for me!!More later... Marcia