Dry Run

All I can say is that the month of December has flown by so quickly and with it the end of 2010. Wow. It's been a pretty tough month for me when I started my usual tune-up for a CF related exacerbation on December 1st. I went into my usual hospital at UCSD Thornton. Everything was going smoothly until the morning of December 9th. I was just finishing up my CPT and my friend and RT was in the room with me and my phone rang. I said oh I better take that just in case, because it's an LA number. And sure enough it was USC saying that they may have lungs for me! They also said that I am second in line for them, but they still needed me at USC since I lived so far away. I thought to myself, well okay it's just like standby. Everyone on 2 West were so supportive and sweet. I could fee all their love before I was sent off in the ambulance to USC. Nurses, respiratory therapists, doctors and staff were giving me hugs and saying they love me. Their love so moved and touched me. I was so overwhelmed with excitement that my skin was covered in goose flesh for at least an hour. It felt surreal, waving to everyone on the gurney as the EMTs wheeled me away. At the same time it felt like it was meant to be, and I came to the belief that I could very possibly be getting new lungs that very day! It was an emotional roller coaster. It was a three hour drive by ambulance to USC. I was taken immediately to an ICU room where I was assessed and met with several doctors. After some miscommunication, we finally were told by the nurse that I wouldn't be getting the lungs that evening. I was eventfully given a dinner tray and was moved to a regular room. The next day a doctor said that one of the lungs was damaged, so the single healthy lung went to a different patient, as I am waiting for two healthy lungs. Then another doctor came into my room and told me a couple of days later, that the lungs had been my perfect match. You can imagine how I must have felt when the doctors obviously were not communicating well with one another by telling me different things. I was more than a little annoyed and anxious. I also think that it was my first time being there as a patient and getting used to a new hospital system and etc didn't help matters. My blood pressure was sky high and the doctors kept asking me if this was normal for me. I almost wanted to laugh, but I kept saying that it's just situational. And it did eventually get better. Normally the transplant team would have sent me home within 24 hours, but I was already an inpatient at the other hospital for my CF related exacerbation, so that changed things up a bit. I stayed at USC until 14th and went home on IV antibiotics. I was so very happy to be home and be able to sleep in my own bed and before Christmas too! I just finshed those antibiotics a week ago and am still feeling congested and lungs feel tight. Oh well. On a good note, I used the elliptical machine for about five minutes the other day! Yay! Overall I am looking forward to the new year and the promise of new lungs! We're going to spend New Year's Eve at home, maybe some sparkling cider or hot apple cider since it so cold out there right now. That's all the plans we have for now. It could always change of course. Here's to a healthy & happy new year!

Thanksgiving

As of last Friday, it's been a WHOLE YEAR since I have been actively waiting on the lung transplant list! I cannot believe that it has been a year already. It went by rather slow for me. While I am so thankful and grateful that these old lungs are still breathing for me, it has been a challenge to keep my lungs happy. I do A LOT of physiotherapy. I feel my day is marked by nothing so interesting. I do my treatments 3-4 times daily, vest and PD&P, plus all my nebulizers. Then I eat, shower every other day, read or watch TV. Woohoo! Just kidding... I used to be more energetic than this. At least we bought an elliptical machine that was on sale, and I do use it 2-3 minutes a day. And I still like to cook when able. And I can still meet with friends on occasion. Having just had a a wonderful Thanksgiving meal yesterday, I am very thankful for ALL my family and friends and my wonderful husband who has been with me for these 16.5 years! All your love and support has meant the world to me!

Gemma

The Amazing Gemma

I am so thankful that I finally got a decent nights sleep last night of seven hours. After having struggled both Monday and Tuesday nights with coughing and breathing, it was a relief to be able to sleep through last night. Of course I had kept Philip awake those two nights as well, and I felt so bad for him. He is so supportive and loving helping me during the night that I am glad he was able to sleep a little better last night too. As we are both diabetic, we check our sugars regularly during the day and at night before bed. We usually have a midnight snack as well taken with Lantus and/or Humolag. I am very meticulous about my sugars as I keep a daily log book on them. Well during those two restless nights of sleep both our sugars dipped quite low. The reason we found this out is that one of our cats, Gemma was persistently jumping on and off the bed and meowing in my ear waking me up. I was a little annoyed at this behavior since Gemma is usually more subtle in the morning. She simply sits at the end of the bed and waits until we get up. But I had to keep shooing her away. Our other cat, León usually does this kind of thing for an early breakfast as he loves to eat. (Philip usually just ignores either of them).

Finally Philip got up to feed her and low and behold she wasn't hungry. I asked for my test kit and my sugars were 87. While not too low, I was surprised. I had a bit of juice, so I could sleep another hour or so. Phil on the other hand was at 55! (Normal for us is 90-120). He immediately took a large glass of juice and eventually felt better. Perhaps this is why he didn't hear Gemma at first? We were amazed that Gemma perhaps woke us both up on purpose, because she sensed our sugars were low. Coincidentally the very next morning Gemma woke us up again. Both our sugars were low again, which is totally unusual for us both! Really! Again Gemma didn't eat her breakfast right away. We are now thinking she definitely is looking out for us and are so proud of our amazing cat! Fortunately we didn't test her knowledge for a thrid time as both our sugars were perfectly normal this morning. But I have to say whatever fluke occurred earlier this week, I am somewhat reassured that Gemma knows us rather well. Here is to balanced sugars and healthier rest of the week!

Ramblings

Hanging out at home on this dreary rainy day. The week has gone by rather quickly, and the weekend is almost here. Been taking care of myself and Philip. Doing all the usual treatments and such. So happy to have our two cats, Gemma & León. Even when they wake me up in the early morning hours wanting to be fed, I still love them! They are a part of our little family and they brighten my day all the time. I'm slow cooking some bean soup on the stove in a dutch oven and am making it up as I go along. Kind of making it from veggies and ingredients that are in the fridge. I am looking forward to trying it out later today! I have been home from the hospital now for about three weeks. It has taken me a while to feel up to writing and general daily stuff as well. I have been catching up on some must needed sleep and resting a lot too. Been thinking that I need to get some exercise equipment like a stationary bike or an elliptical machine so that I am fit enough for transplant surgery and recovery. I have a feeling this fall & winter will continue to be rainy and windy not so conducive to walking outside, especially when I need to stop to catch my breath all the time. I am so looking forward to after transplant when I will be able to do the things I enjoy doing like swimming and dancing, and even the not so pleasant things in life like truly giving the house a good cleaning! And I want to work outside the home and have a sense of accomplishment and be able to earn a living like most people. Not sure what direction to go in; have so many ideas. Thinking pharmacy technician or even a pharmacist depending on how much or little I want to go back to school?! I also have thought of working in a library or working as an office manager or non-profit sector?! I guess I will first have to get well and take each day as it goes. Created a vision board a few months back with the center piece a nice set of lungs, within the four corners are: travel, spirituality, sport or activities and potential careers. I believe this helps me focus on the future, and it gives me hope that it will happen. I can always add to it as well. Right now though I must live in the moment and come up with creative ways of keeping myself occupied. Any ideas? I admit it that I have procrastinated with taking a knitting course or club. And I have a also procrastinated at joining a book club as well. Will be more motivated to do something now that I actually put it out there for all to read! Until next time!

Home Again

I just home yesterday after being in the hospital for three whole weeks! It feels wonderful to be home and finally relax! I slept in until 10:00 AM today and watched movies. Actually I am still feeling quite tired now, which is usual for me after such a long hospital stay. But it still feels so good to get a good night's rest without interruptions and there isn't an IV pump bleeping every 20 minutes either! All I can say is that all is right with the world right now. Just thankful to all the doctors, nurses and respiratory therapists who take care of me. I had so much junk in my lungs this time. Coughed up so much crap. I thought it was never ending. And thanks to the housekeeping and dietary staff who kept my room clean and delivered food to my room. It is much appreciated!