A few changes in the health perspective since my last post. After stopping the iv antibiotics after 2 weeks, my headaches came back with full force. A week after they were stopped I called the doctor and told him that I thought I needed to start the iv's again but I didn't want to have to go back to the hospital and be admitted. He agreed and that Wednesday I went in and got my port re-accessed. We started home iv therapy Wednesday night. The nausea came back at me almost immediately. I was willing to fight through it as long as those killer headaches would disappear. It's been two weeks on iv's again and the headaches have stopped! The nausea is still hit and miss, but I am feeling much better. I agreed to remain on the iv's for 4 weeks total, so I have 2 more weeks to do. I can do it, I'm tough!
I went to clinic the Monday after I re-started treatment. I found out all my vitamin levels were low. So was my iron and hemoglobin. I have now increased my vitamins and iron. Hoping the numbers will find their way back into the normal range. Tomorrow is the day that my port needle gets changed again. Those are not my favourite days, but things could be much worse, right?
My Pulmonary Function Tests (PFTs) were also down a lot since I had done them 3 weeks previous. I am back down to 26%. Definitely ready for those new windbags! For those of you who do not know what PFT's are, here are the basics:
1. They get you to sit in this box, that happens to be much smaller than a jail cell (sometimes they leave the door open).
2. You are handed these fancy, stylish nose clips (so you cannot cheat).
3. The tube mouth piece thingy is adjusted to the perfect height.
4. Then the testing begins. You clip your nose, making sure you look stylish, then tighten your lips around the mouthpiece. Normal breathing....in, out, in, out....BIG breath in and BLOW!!! Keep blowing until you are basically purple and then another deep breath in. This measures the volume of your lungs. There are a lot of other tests you can do like panting and breath holding. Thank goodness those tests are not done very often.
I haven't been too busy or done anything too exciting since my last post (other than the med changes). I am now the proud grower of strawberries and tomatoes. I hope I can keep them alive long enough to get some deliciousness from them! I cannot wait for green fried tomatoes! We also planted a lot of flowers at our house, it is looking quite lovely outside.
The Cystic Fibrosis Great Strides walk took place on May 26, 2013 across Canada. My mom and a few friends raised some money and went and walk 5km in Red Deer. It was a beautiful day and a fabulous event. Red Deer raised over $30,000 and Canada wide over $3,000,000 was raised! People with CF are not supposed to be together so I did not go to the walk. Plus, there is no way I would've been able to walk that far. Getting upstairs is challenging enough.
Mom and I were talking the other day about all the stuff I used to do. It is very sad but I can't even believe that I used to be able to play as many sports as I did. It's hard to think back to the days that I played baseball, basketball, and curled and was not completely breathless. I can not wait for the day that I can go out and do all the things I want to do.
I go back to CF Clinic on June 19 for a check-up and hopefully I will be well enough to stop the iv antibiotics for a little while. The transplant center also asked that I get scheduled for a few more tests again. It has been almost a year on the waiting list so a few tests need repeated. So along with having clinic I will be having blood gases, ECHO, and a bone density test. At least I know the transplant center has not forgotten about me. I got back up to see those doctors on June 24. It's always nice to go there and get some reassurance that they are still looking for lungs for me and they have not forgotten. 3 months is a long time to go without hearing anything from them at all. Last time I was there the doctor told me that I didn't have 2 years left to wait for lungs. It was hard to hear that, but I am so hopeful that my new lungs are on their way.
Some exciting news! Lorna, a fellow CFer and a lady who was in the 6 week program with me in Edmonton will be receiving her new lungs this Friday. She has been in the hospital since December and her mom and sister have courageously offered to each donate a lobe of their lungs to Lorna. Hoping and praying that everything goes smoothly for all 3 of them. I cannot wait for Lorna to wake up to a whole new life! Best of luck girl!
Also, congratulations to the Bachelor of Education - Middle Years Graduating Class of 2013 who will be attending convocation this Friday in Red Deer. You've all worked so hard and best of luck to all of you in your future careers as teachers. I wish I was up there with you all, but I know I will be there one day hopefully soon!
Being sick sure makes you appreciate all of the small things in life. I will not take one single breath for granted. Each day is a gift and I will take full advantage of it! I'm so ready for my new life to begin! I still have tons of stuff that I want to do!
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