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 mask...new 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 apulmonary function test (PFT's).You have to do it3 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 in...my 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 min.to 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 been...now 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 Hosp.at 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.$3.80...total 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!