Wednesday, December 24, 2008

Monday, December 22, 2008

Last few days of Puerto Rico

Two tires on our rental car were flat this morning and we ended up getting another car.There were lots and lots of kids at breakfast this morning.We found out it was a swim team.As we were out relaxing and getting some sun,we found out that back home there is a two hour school delay because of freezing rain.We were glad that we were basking in 80 degrees and sunny!We left for Lindsay's game at around 3:30.It was played at the same place,the University of Puerto Rico.Her team won this game by 10.Getting home was a bit stressful.We got lost again...long story,but ended up asking directions from a policeman,who ended up escorting us back to the right road.Finally,we made it back to familiar territory.We ate rice and beans and listened to Katelyn's(niece)basketball game via computer.

Breakfast at usual at the motel,then outside by the pool.Keep in mind that I always had to go up to the room first and do all my treatments and vest time and THEN I'd go out.The girls had fun in the ocean today trying to catch fish with their hands.Today was hotter than usual.Not that we complained!!At 12:30 we left to drive to Old San Juan.As usual when trying to find a place,we got lost,but we arrived in one piece.It was an interesting old city.We saw the old forts,mansion a beautiful old post office.I told Warren he should apply to work there during the winter!We had fun going in many of the shops.The buildings were all different colors.We did a lot of walking and I did pretty good with it.It was a tiring day...we sat out by the ocean and relaxed that evening.

Our last day.We were out in the sun one last time.Dad even ventured out to bask for a few minutes.Karen and I walked a bit on the beach.At 12:30,we boarded the bus to go to San Juan to the airport.The plane left at 4 and flew to Philadelphia.The plane was a 767,the biggest one I had ever been on!At Phila.we were delayed an extra hour.We got to Pittsburgh after 11,had to wait a long time for the luggage,then had to drive home.We brought Lindsay home with us.We got to my place at 2:30am.Long day!!!Five tired people!I'm just so glad I got to go back to PR.It was such a fun,relaxing week(except for the driving!)I will post some pictures in my next post.

Thursday, December 18, 2008

Puerto Rico cont.

I woke up abruptly to Karen saying there is going to be a tsunami drill in a couple of minutes.I just heard the word tsunami and FLEW out of bed!It ended up that the drill was mostly for the employees and it was interesting to watch from our 7th floor deck.A helicopter hovered and the employees all met and walked down the tsunami marked road.We were glad there is a plan...

The weather here is just amazing!It's around 80,but not humid and always a breeze.I'm not a lay in the sun person,but here it is fun because you don't sweat.It rains a few times a day,mostly in the morning.Sometimes it's just for a few minutes and then the sun is right back out.I just know it's going to be hard to go back to the cold Ohio weather.Can I just stay here for the winter???

We sat in the sun awhile after breakfast,then dad and I went in search of more lachon.We finally found a stand after about an hour.They were out of rice,but we got the meat and garlic bread.We brought it back and the four of us enjoyed it at a table in the shade by the pool.We relaxed some more by the pool,thinking what a life...stomachs full and such perfect weather!Later,we showered and went to a spanish grocery store.I wanted to get a spice called achiote that mom used to use when making rice and beans.

We ate supper at a place called Del Terazzo,where the locals frequent.The food was authentic puerto rican and wonderful!We were on a deck with votive candles at the tables,lights wrapped around palm trees,beautiful atmosphere,we loved it.Except dad wanted florescent lights to see...puhleeze!It was a fun evening.After that,we headed over to a pastry shop(as if we weren't full enough)..It was right before closing time,so along with our order,they gave us 3 boxes of free pastries.We gave those to Lindsay to share with her teammates.

The team had gone to a rainforest all afternoon and evening.I knew I couldn't go,because it was in the mountains.Didn't want to go through the lack of oxygen experience again!Dad,Karen and Mary Beth thought about going along,but ended up staying here too.

We ended the evening listening to the Hiland/Triway boys basketball game via computer.

Tuesday, December 16, 2008

Puerto Rico

After a looooong day,we arrived safely in Puerto Rico.We got up at 2:15am to leave by 3.When we picked up dad,he was still in bed!So we got going later than expected,but we were OK.We had to drive to Pittsburgh,PA and the plane left at 7.We had a layover in Charlotte,NC.We arrived in PR at about 1:30 and got to the motel by 3:00pm.I did my treatments,then we explored.We ate at the motel and the food was great.The rooms are typical Embassy Suites,but with a Spanish flair.Outside,there are 3 pools that run together and you can walk out to a small beach.It's gorgeous...
We slept quite well that evening.

The others laid out and relaxed all day while dad and I drove to Aibonito,where we had lived.On the way,there were places along the road called lachonera,where you could buy lachon,which is roast pig.So we got that,served with spanish rice and beans.SOOOOOOOOOOO good!!!It took awhile to get to Aibonito,but we finally found it.The only problem was it is up in the mountains...we were up 3,000 ft.and I had trouble getting enough oxygen.I started yawning and yawning!!And I got a really bad headache and knew we couldn't stay long.We saw the hospital,church and the general area where our house had been,but there are other buildings there now. We stopped by the plaza that has been beautifully redone. Flowering trees and scenery are very tropical and so pretty and green.Dad was impressed with his recall of his skill in communicating so well in spanish.We were NOT impressed with the Puerto Rican drivers!!They just cut in front of you all over the place,cars and motorcycles.Crazy!But we're still alive...My headache didn't go away until we were back down the mountain.But I'm glad I got a chance to go back.

Last evening we just sat outside by the pool and talked and enjoyed the warm weather.It is so weird...we left with snowy 16 degree weather and in a few hours were at 80 degrees.It was sunny and beautiful all day yesterday,not too hot,just right.This morning we have had a couple of quick showers,where it rains for maybe a minute,then the sun is right back out.I sat on my little deck this morning while doing my treatments.We are on the 7th floor of the motel and it's a beautiful view!I can see the ocean.Everything is decorated for Christmas here too,which seems very strange.It's hard to feel like Christmas here!!

We spent a lot of the day lounging by the pool and relaxing until we left for the girl's game around 3:30.It took quite a while to get to the game,mostly because there was so much traffic...and like I said before...crazy driving down here!The girls played against a very good Puerto Rican team.AND,we won by 5
points in a very fun game.It was also fun watching the Puerto Rican cheerleaders cheering in spanish,using bongo drums and getting their crowd was a fun atmosphere!We stopped to eat after the game,it was kind of a late night.So far,lots of fun,good food and lots of laughing!!More soon,and pictures.

Tuesday, December 9, 2008

It's beginning to look a lot like Christmas...

My favorite time of the year!I've been busy and having fun getting out the Christmas stuff,decorating,making some wreaths,doing a little baking,shopping,etc.I'm almost done with everything.I'm a bit more organized than usual because I'm leaving on Saturday for Puerto Rico!My niece Lindsay is in her last year of college and her basketball team is going there to play over their Christmas break.So why not go watch??My dad,sister and friend Karen are going and we will be gone till the 19th.Hubby will stay home and hold down the fort.I lived in P.Rico for a couple of years when I was little and I have some memories of it.I've always wanted to go back and we're are going to try to see if we can find the house we lived in,or if it still exists.And we're going to explore Old San Juan.We're looking forward to the 80 degree weather too!So stay tuned for some Puerto Rico pictures before long.I know I have been doing too much because my chest has been a bit achy and my joints are hurting again too.I am ready to relax and bask in some sunshine!!

Saturday, November 29, 2008

Thanksgiving pictures

Hey everybody,let's eat!

We brined the turkey this year and it was sooo good.I used the recipe from Pioneer woman.So tender and juicy...It was probably the best turkey I ever ate!And the 16 of us ate that whole thing!

I made 2 pumpkin pies and 1 french silk chocolate.


Aila's first wishbone..."I wish my grammie would come back from Utah right NOW..."
She and Jill couldn't go along with Kevin and Judy and the rest of their family because Jill is coaching 7th grade basketball.

My sweet baby.

My energetic on the go nonstop big boy.

Aila and Kayden having fun with giant legos.

...while some of the rest just veg out after eating.

Perrin all packed up and ready to leave.

while someone else is NOT ready to leave...

and grandma is left to cuddle the dog...

Thursday, November 27, 2008


I was thinking today of all the things I'm thankful for and there's so much,I couldn't possible list it all.But here are a just a few things...

I'm thankful for my hubby,who has always been there for me,through the good and bad.We still have fun together and laugh a lot.
I'm thankful for my son,my daughter,daughter-in-law and my two adorable little grandsons.
I'm thankful for my smart little dog Meg.
I'm thankful for my dad and the rest of my family...we have gone through some tough times through the years,but have hung in there together as a family.
I'm thankful for my church family...they are wonderful.
I'm thankful that I have some very good friends who keep me sane...
I'm thankful for good health insurance!
I'm thankful that I have finally been diagnosed with CF and am now getting the proper treatment.
I'm thankful that I'm feeling good right now.
I'm thankful every morning when I wake up and can see clearly (lasik surgery is great).
Most of all,I'm thankful that I'm a child of God,who loves me unconditionally,even though I don't deserve it!
I'm thankful that in tough times I have my faith to keep me strong.

Blessings and Happy Thanksgiving!

Saturday, November 22, 2008

A busy week...

My week was kinda busy,but fun.My grandson Kayden turned 2 on Warren and I made the trip to their place to have a little celebration.But little Perrin wasn't feeling so well that night.We found out the next day from doing bloodwork that he has mono!I didn't know babies get mono,but I guess they do!I wanted to go help Steph this week,since he wasn't sleeping well at night,but called my cf dr.and she said it probably would be better to stay away from him for a few days,since it's a respiratory thing.Bummer.Then Tues.hubby started getting sick...sore throat,then head cold and chest hurting.He came home from work sick and was worse on Wed.On Fri.he didn't go to work,so I KNEW he really felt awful.I banished him to the other bedroom to sleep all week and have been using clorox wipes and Lysol everywhere!He did work this morning and is feeling a somewhat better today.I so hope I don't get it,because I feel really good right now after having the IV's.

On Wed. evening I drove an hr.and a half (by myself,I might add),to watch Tiffany's music program.She teaches elementary music.I had NO clue how to get to the school,but thankfully my GPS took me right to the door!It was a 6th grade musical about composers...they did very well.I went to her place a little afterwards,so got home kinda late.And then had to do my treatments.Late,late...

Thurs.I decided it would be a good day to stay in my pj's...just I did.I didn't do much except worked on some sewing projects I'm doing for Christmas gifts.Fri.I got groceries for Thanksgiving and that evening, I went to the high school music madrigal with my dad and some friends.The kids did a fantastic job with the music and the food was wonderful!You felt like you were dining in a castle in midieval times.

Jeremy brought Kayden here this afternoon and Kayden is staying overnight.Jeremy and Steph will come tomorrow afternoon and in the evening we're having a small birthday party for Kayden over at my dad's at night.Perrin is doing better,but I probably won't hold him,which will be a trial for me!Jeremy and Steph would like to move back to this area and are trying to sell their townhouse,so they were going to work on some painting this afternoon and evening.It's hard to do that with 2 little kids around.Kayden has been a good little boy,now hoping he sleeps all night...time for me to get some sleep too.

Sunday, November 16, 2008

Got spoons??

I have always been a low energy person.I've always been used to pushing myself to get things done.Now I can understand WHY I haven't had a lot of energy.It used to be so frustrating for me when I wanted to get stuff done or be involved in things at church like everyone else,but I would get tired so quickly.Other people could do this,why couldn't I??So,I would push myself.I can't do that so easily anymore...Now I've been learning my limits and am accepting that I can't do it all and I'm better off having finally learned this!

A friend of mine told me about the spoon theory,which explains it well.You can read about it here.There are some days when I feel like I have many spoons...other days,I hardly have any to spare.I'm still learning to pace myself,prioritize and make choices so that I don't use up all my spoons!

Friday, November 14, 2008

Good news!

Audrey just called me and said that Bob has started to really improve in the last 24 hours!They took the ventilator off,he does NOT need the trach that they were going to put in today and they took out his feeding tube.He is still sleeping a lot,but has talked a little to the doctors and Audrey.PTL!!Thanks to those of you who have been lifting them up in prayer!Keep praying for continued improvement and complete healing...

Wednesday, November 12, 2008


YES!!!...I got my picc line taken out today!All 42 inches of it...I just have a bandage on till tomorrow.AND my pft's were up a little...49% and 1.17 liter.I am feeling good right now and I am hoping that I can maintain this for awhile!The hard part is that when I feel good,I tend to do too much,then I get overtired,then I get sick... So I'm trying to work on that.For now,I'll enjoy the freedom from the early morning and late night IV's and love breathing a little better!!

I did a little Christmas shopping after my appointment,then went over to Aultman to see Audrey.She is quite a trooper!She goes home every night to try to get some sleep and then goes back for the day.Bob is still about the same.He is stable...mostly sleeping...some movement.His right side is strong,his left side is weak.He has short periods of connecting to what is being said.He still has fluctuating blood pressure.The plan is to remove his breathing tube on Friday and insert a trach.Please continue to pray for Bob to heal and for strength for Audrey.

Saturday, November 8, 2008

Update on Bob

Audrey has been texting/calling/emailing.They THINK that the bleeding was caused by high blood pressure,causing a blood vessel deep in his brain to leak.The bleeding has stopped or clotted now due to the factor stuff he is getting.They tried to bring him out of the induced sleep yesterday,but his blood pressure went up,so they put him right back into sedation.(He is on blood pressure medication).They will try to wake him up again today.They will probably not have to do surgery now.This has affected his left side kind of like a stroke would,so he will need therapy as he improves.He is still in ICU and still in pretty serious condition.Please continue to pray for his complete healing and for strength for Audrey...she is very tired!

Friday, November 7, 2008

God's beautiful colors

I do love this's kind of like a second spring.The colors around here this fall have been beautiful!I have been enjoying the warm weather this week...gorgeous and warm until today.It's colder and lightly raining,but that's also inevitable in the fall and we are a good ways into November.These are just a few pictures of the colors around my house.

Wednesday, November 5, 2008

Clinic today and a prayer request

Clinic...Ok,so I shouldn't have been too pft's simply will not improve!!Still at 42% and 1.00 liter.So they want me to continue the home IV's for another week. I will go back next Wed.and HOPEfully there will be an improvement by then.I also lost 4 pounds,which surprised me.My resting pulse ox is 94%.She said my lungs are not sounding as crackly,but still wheezy.At least I can talk!!

Prayer request...I had my phone turned off at my appointment and when I turned it back on,I noticed that my friend Audrey had called.(This is my friend who I blogged about earlier).Strange,because she doesn't usually call me while she's at school.I called her back and she said her husband Bob is bleeding on his brain and they're ready to lifeflight him to Aultman hospital.So I said I'll come right over as I was only about 20 minutes away.He was in ER and on a ventilator and somewhat sedated.The CT scan showed the bleeding and they are going to do an MRI sometime tonight.He also has hemophilia,so they gave him factor right away.They will possibly do surgery to put in a shunt to drain the bleeding,but said it is too risky at this point.He was taken to surgical ICU,only immediate family can go in,but can't talk to him.He can't have any kind of stimulation at this point,has to be kept very quiet.Their 3 children are all out of state,but are on their way.Please pray for Bob...that the doctors can figure out what is causing this,for the right treatment and for peace and comfort for Audrey and family as they wait...
Thanks!Time to get the IV's ready...

Tuesday, November 4, 2008

Good weekend

On Sunday afternoon,Jeremy,Stephanie and the boys came.It was Steph's birthday and they had planned to stay overnight.Tiffany was here too,so our whole family was together.I was ready to get my hands on those boys again!On Monday Steph and I met JoEllen and her kids at Burger King close to our house.The kids had a great time playing and it was fun to get out a bit.Here are some pictures that JoEllen took.She always has her trusty camera handy!

Kayden taking a little time to eat.

Couldn't this be a Burger King advertisement??

Kayden ready to go down the slide with Jakobi right behind him.

Maylee and Jakobi checking out Perrin.

Caislyn trying to get Perrin to smile.

Big brown eyes.

Perrin sitting on the alligator.He can't quite sit on his own yet.

Steph and I with the boys.If you look closely,you can see on my arm where my picc line goes in.

All five sitting on the alligator.

I'll post tomorrow after my clinic appointment.I'm hoping that I can get my picc line pulled!

Friday, October 31, 2008

Clinic appt.

Wednesday I had a check up appointment at Akron.The PFT showed FEV1 at 43% and 1.02 liters.Not a big improvement,but I will take it.Also,my culture showed a bit of aspergillus and another fungus (I forget what it was called).She said it's very common with CF ...I just wonder how I get this stuff!!So now I'm on an antifungal med.They did another culture yesterday.She also thought that my laryngitis was caused by the TOBI,although I did have a bit of a sore throat too,which probably made it worse.I was still squeaking yesterday,but today,I'm finally able to talk again,still not quite back to usual,but close!I go back next Wed.when they will decide if the picc will be pulled or if I'll need to keep doing the IV's for a third week.The tobra IV is now changed to every 36 hours instead of 24.I have to keep closer track of that schedule.I can practically do the IV thing while I'm asleep,I'm so used to it.At 5:55 in the morning or midnight,I AM practically doing it in my sleep!

My dad is coming home from the hospital today(I think).He had a partial knee replacement on Tuesday.He seems to be doing pretty well.My sister will stay overnight to help him for 3-4 days.I wish I could help more...Please pray for him to heal well and for my lung function to improve!Thanks.

Monday, October 27, 2008

Quietly resting

Quietly is the key word here...I have laryngitis,serious laryngitis.I haven't been able to talk other than whisper for 6 days.I don't LIKE not talking.Yes,I know I'm home by myself all day,but I do like to maybe have some conversations with my dog occasionally.And phone calls sometimes.I have been doing a lot of text messages...I think the reason I lost my voice is I started a new inhaled antibiotic medicine called TOBI,which targets the pseudomonas.It takes at least 20 minutes and it just made my throat raw,it was brutal!I have to do it twice a day for 28 days,then off 28,then back on.Hoarseness is a side effect,but this is beyond hoarse!!So I don't know if it will get better as I get used to the med.or if I won't be able to talk for 28 days.Yikes!!It's just annoying...

The IV's are going OK.The nurse was here this morning to take blood and change the dressing over my picc.She said my lungs are sounding better,so I guess it is all worth it.I go back to Akron on see what the doctor says.Hopefully I can stop the IV's as planned in another week.I'm glad I can stay in today,it looks like it could snow.I'll just curl up and keep on quietly resting...

Wednesday, October 22, 2008

Back on IV's

I had a clinic appointment last Friday afternoon at Akron. PFT's showed FEV1 down to 42% and .99 liter.Eek!For my height and weight,I should be taking in 2.38 liters of oxygen. I have been coughing more and my chest has been feeling tight the last week and was sounding crackly and wheezy again.My doctor said she felt I needed to go back on IV's,but thankfully, is letting me do them at home instead of the hospital.I was a bit depressed that I needed them again so soon,but glad I can do them at home.And I AM glad they're treating me aggressively.So,Monday morning I had an ENT appointment and after that I had to get the picc line put in again.It did not go quite as smoothly as last time!The line was in too close to my heart and making my heart do funny things,so the tube had to be pulled out about an inch.It was quite a long tiring day!

Tuesday,the home health nurse came and brought my IV equipment and meds,taking over my fridge again!I needed a refresher course in administering the meds,but it came back to me pretty quick.I am on two different antibiotics than last time...tobramycin and ceftazidime.I run the ceftazidime every 8 6am,2pm and 10pm.Each time takes 30 min.The tobra is from 1 to 2pm.I had to have blood drawn before I started and 6 hrs.later.The nurse will be back on draw more blood and change the picc dressing.They need to do blood levels because the tobra can affect the kidneys.I also have to add an extra vest and inhaler treatment in the afternoon.So the next two weeks,I'll pretty much just be doing lots of treatments,trying to get back on track again.I did have a couple of good months after the last IV's.I really felt pretty good for awhile!

Sunday, October 19, 2008

July 25 clinic/hospital

My first clinic appointment was set for July 25. My hubby went along. As soon as I checked in at the window,I had to put on a for me.I had to leave it on until I was in the patient room. I first saw the nurse,t hen the nurse practitioner,who went over my history.Then I put the mask on again and went down the hall to do a pulmonary function test (PFT's).You have to do it 3 times and they take the best one. My FEV1 this time was 48%. Quite a drop in just a few months.Then back to my room.Doctor listened to my lungs,which sounded very "crackly". Because of the PFT and lung sounds,I was told I needed to be admitted to the hospital for at least a week of IV antibiotics.The nurse took us over to the adult CF wing (connected by a walkway).She showed us around a little.There were no rooms ready right then,so they told us go have a "date" first and come back in a couple of hours.We were both hungry and I wanted to get a book and a toothbrush for the hospital!I wasn't prepared for this!So we found a Max and Erma's and a Sam's Club.Then headed back to the hospital.The rest of the day was a flurry of tons of people coming in,asking lots of questions,bloodwork,x-rays,doctor coming in,more questions,having trouble getting an IV in,finally successful.Student nurses,nurses,technicians,lab people.It was exhausting!!They had trouble getting an IV veins are very small.They had to redo it because it wasn't working in my hand,and finally after midnight they had it in right where you bend your arm and I was left alone for a few hours to sleep!

I was in complete isolation for awhile because a few MRSA bugs were growing in my culture,but just a FEW...the pseudomonas were still there.Everyone on staff had to mask,gown and glove to be in my room.I was confined to the room for a few days,then I was allowed to mask up and go outside awhile,which was soooo nice.Also,the second day I was there,a picc line was put in my arm.It was sort of a surgical procedure done in my room with a specially trained nurse.She explained everything before and during the procedure.It took about 40 min.for her to set everything up and about 8-10 actually do it.The picc went in just above my elbow and ended close to my heart.She watched an ultrasound machine to guide it in.Right afterwards they brought a portable x-ray machine in to make sure it was in exactly right...and it was.The picc was so much more comfortable than the IV had they could run the IV's through it and also take blood.

I did feel weird being in a children's hospital,even though I was in an adult wing.Here's an interesting piece of trivia...I found my baby book last week.I was in Akron Children's age 2 weeks and had surgery for pyloric stenosis.Mom had saved the hospital bill.The room was $14.50 a day,total of $203,operating room was $20,labs $15,drugs $126.45,misc.$ was $368.25!That was a long time ago...You don't even want to know what the cost of THIS one week was!

I really liked my dr.I had to try different antibiotics.I got sick on cipro,so they gave me phenergan,which put me to sleep for a whole day.I slept right through my treatments and IV changes...I was OUT!They did find 2 that worked,so I was on 2 IV's 3 times a day,4 vest treatments,along with nebulizers.After 2 days,I started going to physical therapy every day(mask on,of course).I learned stretching exercises to expand my chest muscles for optimal breathing capacity.The therapist also took me outside for walks to measure my oxygen level while walking.I was kept very busy in the hospital.In between time,I could be on my laptop,read,watch TV or just rest.I needed the rest actually.Oh,and the food was quite good,compared to other hospitals I've been in. The highlight of the week was when my two sweet grandbabies came to visit!

They did a lot of tests,finding out that I am pancreatic sufficient,OK in vitamins A,E,and K but low in D.I had a bone scan done,which came out pretty normal.After one week in the hospital,I was sent home to continue on the IV's for two more weeks.That was a challenge too,but at least I could be home!

Friday, October 10, 2008

Finally,a diagnosis

In May of 2004,I was hospitalized with a MRSA infection and I missed the last two weeks of teaching.My health seemed to kind of go downhill after that.The following year in May, my doctor did a bronchoscopy,suctioned out mucus and washed out my lungs and said I really needed to think seriously about quitting teaching because my lungs look so bad.Again,I missed the last two weeks of school.And that summer,I made the decision to "retire" and concentrate on taking care of my health.He did two more bronchoscopies over the next year and a half.In theory,cleaning out the lungs and starting "fresh" is a good idea,but it is an invasive procedure and for me,it was futile.Within a day or two,I was back to my usual coughing self.The dr.also had me start using the percussion vest.After my 3rd bronchoscopy,I decided to change doctors at this point to get another opinion.A lady in our church has a lung disease called aspergillosis,and I knew she really liked her doctor,so I made an appointment with him.My first appointment with him was a year ago in Oct.He had me do my first ever pulmonary function test and my FEV1 score was 58%.He did the whole CT scan of lungs and sinuses in high resolution.He thought I might have immotile cilia,the newer name being PCD (primary ciliary dyskenesia),which is basically the same thing as Kartagener's.I googled it and researched and thought it fits me pretty well.(You know how you can google and try to diagnose yourself!)I told him I wanted to know for sure.You have to do a cilia biopsy and need a special microscope.The disease is somewhat similar to CF.After my third visit with him,he decided to send me to a CF doctor from the Cleveland Clinic because he wanted another opinion.So a couple of weeks later I went there,armed with all the info.about PCD,expecting him to set up the cilia biopsy,etc.Instead,he reviewed my history,asked lots of questions,then said his gut feeling is that I have CF,not PCD.This was before even listening to my lungs or doing an exam.It took me by complete surprise!!He sent me directly over to Akron Children's Hospital to have genetic bloodwork done,sweat test,another blood test to rule out Alpha-1 antitrypsan.There I am in a children's hospital waiting room with cartoons on TV,play table,etc. and then I was escorted to a lab room with a cute bus table to get blood drawn and arms wrapped in pretty pink polka dot wrap stuff for the sweat test.I also had to do a culture test so they could see if any bugs are growing in my lungs.

So then we had to wait a few weeks for the test results.It was June 4th...The doctor called me with the news.My sweat test was not terribly high,he thought it was a false positive,the Alpha-1 test was negative,as he had suspected.But the culture showed pseudomonas areuginosa,a very common CF bug colonized in my lungs.I've learned that once you have this,it's almost impossible to get rid of.The genetic testing showed that I have one mutation that is very common in 70% of CFers,called delta F508.The other gene mutation is not as common.So all of a sudden I learn that I do indeed have cystic fibrosis.It was a bombshell...I had seriously thought everything would come back negative.It was not what I wanted to hear!But on the other hand,I finally had a diagnosis.Now I KNOW why I am like I am.

I went back to see him in a few weeks.He went over all the tests and talked about the medicines I will probably be on and why.He said he wanted me to go to the Akron CF adult center.He said the doctors there are excellent and it is an accredited CF center.Also,it's the closest center for me.So he was going to talk to the doctors and set up an appointment for me.It seemed to take forever and I wanted to get going and get started on the right treatment.My chest had been aching all spring and summer and I had no energy whatsoever.Also my joints were hurting really bad,especially my knees,fingers and shoulders(joint pain can be related to CF).So I was very ready for the appointment.Finally,it was set for July 25...

And now I'm off to celebrate my perfectly imperfect life,because it's my birthday!

Sunday, October 5, 2008


This might be boring,but it's part of my life...After the bowel obstruction surgeries before my wedding came a surgery to remove severe endometriosis,a mastoidectomy (major surgery for an ear infection),more tubes in the ears,then a sinus surgery with a new ENT (ear,nose,throat) doctor to correct a deviated septum and drill some holes somewhere in my sinuses for more drainage.Not fun!Then the lobectomy...removing a good part of my left lower lung.The thinking there was that if they removed the worst of the bronchiectasis,it would "cure" my lung problems.I got pneumonia after surgery...It was a long recovery from that one.A few years later,myOB/GYN found enlarged ovaries,so I needed another surgery for possible ovarian cancer...turned out to be endometriosis again.I had been referred to a specialist in Akron for this.I told him about my lung problems and that I get pneumonia whenever I have general anesthetic,so they did breathing treatments before and after surgery.This time, my lung collapsed.He came in and said,boy you weren't kidding about your lungs and sent in the pulmo team.In the late 90's I had to have a foot surgery done and I requested the "twilight"sedation for that.That worked better...Next was another sinus surgery in 2001.I had switched ENT doctors because I hadn't liked the other one at all,bad bedside manner.So this is my 3rd ENT.He mentioned that I might have something called Kartagener's syndrome,but he did research on it and said no,probably not,because my organs would be reversed if I had it.It kind of made sense to me though,because with this disease,the cilia hairs in the sinuses and lungs don't work right,so you have excessive mucus build up and sinus problems.When he did the sinus surgery,he used the twilight sedation at my insistence.He had never done that with a sinus surgery before,but he agreed to it,with the condition that if I needed to be put "under" at any time during the surgery,he would do that.But I tolerated the lighter sedation OK.I also started going to an allergist/pulmonologist about this time,because I thought maybe I should be tested for allergies again.Negative on the allergies,but he did find that I had acid reflux.He put me on Prevacid,which helped a lot,I could eat again!He also did bloodwork and found my IgG levels to be low,so he thought my immune system was deficient,so I started getting IV gammaglobulin treatments once a month at Aultman hospital.A CT scan showed more bronchiectasis had developed on the right side of my lungs.Now I know I have bronchiectasis,chronic sinusitis,acid reflux and my immune system doesn't work properly.So I'm thinking,OK,I'm just a very weird person!Why am I like this??I didn't know anybody else like me.I was on antibiotics several times a year for flare ups,coughing,not a lot of energy,feeling yucky a lot of the time,but trying to lead a normal life like everyone else...Just so this doesn't sound too depressing,keep in mind that this was over a span of years and I DID have times where I felt good too.Next up,the rest of the story...

Monday, September 29, 2008

My WICKED weekend!

On Friday night,I went to see the musical Wicked.I went with my friend Gail and our daughters Shannon and Tiffany.We went to Pittsburgh,which is a little over two hours away.We had all gone together to Toronto to see Phantom several years ago and decided it was high time to see another musical.

We arrived at the Benedum Theater about half an hour before it started.

We had really good seats down front.The curtain was a map of Oz.

Gail and Shannon checking out the program before the show.

The show was just amazing and we loved the music!!If you don't know the story,it's a prequel to the Wizard of Oz...about Elphaba,the wicked witch and Glinda,the good witch.Lots of humor,some sad parts,along with good lessons woven throughout the story.Glinda was a hoot!We all said we could see it again!!Afterwards,we went to check in at our hotel and after we got settled in,we decided that we needed to eat,so we went down to the hotel restaurant.We were up sooo late...I think it was after 2:00.Good thing we could sleep in Sat.morning!We left the hotel late morning and drove to the Strip district.On Saturdays on the Strip,there are vendors on the streets,selling all kinds of foods,produce,t-shirts,jewelry, etc.Our favorite stores were the Macaroni Company,Pittsburgh Popcorn Company and Penzeys Spices.There were also different ethnic grocery stores that were fun to look through.Most of what we bought was food!

We ate a late lunch at Primanti Bros...a unique sandwich restaurant.They serve coleslaw and french fries right on the giant sandwiches.

The waiter was quite friendly!!

Loved smelling all the different spices at Penzeys.We all bought several kinds.Wish we had one of these stores here in town!

Finally,we all had to take a rest and we sat for awhile outside of the popcorn store and just relaxed.It was a great weekend...we got back early Sat.evening.Shannon bought the Wicked CD,so we listened to that the whole way home.A perfect ending to our wonderfully wicked weekend!