Back Again

As I sit here listening to Badi Assad on my iPod, her music relaxes me. She is a really cool Brazilian jazz singer. http://www.badiassad.com/2009/badiassad.php?language=en I learned about her by chance while living in the San Francisco Bay Area and bought one of her CD's in a music store. There is much passion in her music and even though I may not always understanding her lyrics, her music enlivens me and relaxes me at the same time. Sometimes I just get different songs in my head, and they will bring up old memories. I'll be humming or singing to myself which I'm sure some people might find strange as my voice and breath aren't the best in the world.If one song could sum up the past few months, "Love is a Battlefield" comes to mind. It's symbolic. Sometimes I feel I'm fighting CF, yet CF is a part of me. Why fight myself? It's been a tough winter and now spring. I was in last month in March when it was discovered that I retain CO2. I was in ICU and IMU for almost a month and boy was that both exhausting and scary! I could write many details of what happened, but quite honestly the days have all blended together. The result is that I am now using Bipap at night to let my body rest and get the CO2 out of me. The home model is much smaller and quieter than the hospital model. Things were going well at home for the first few weeks and then I couldn't breathe even with the Bipap. My husband had to call 911, and I was sent to the local hospital a week ago. I was eventually transfered to where my CF specialist is which is my usual hospital. All in all, I stayed out of the hospital for three weeks. And as my family help pursue the possibility of living lobe transplant, I am once again overwhelmed by people's generosity and kindness, such a humbling experience. Your love and prayers have helped me get through last month's and even this newest flare up again and again!

Just Another Day

Well it looks like this winter has took me through a loop! I Had to go back into the hospital again after catching a nasty virus that went into my lungs. Turns out that virus had been RSV and pneumonia. I simply haven't been this exhausted in long time. Near the end of my stay, I had to deal with a small bowel obstruction, constipation where I hadn't gone in almost four days. It was so awful. I was so relieved once I finally could go. I think it was the combination of being in the hospital for almost a month on various antibiotics and other meds and plain old CF gut that caused it all. That is one thing I hate most about CF is all the GI issues that I have to deal with sometimes. When the doctor suggested I go home, I was so ready to get out of there! Now as I sit here and type this message I think about a dear friend who lost his battle to CF this week, Mike. I was so surprised to hear the news as, I was in the hospital with him and had seemed to be getting a little better. Now I am just so angry and sad at the same time. It's so hard to understand ifs and whys. I could go nuts thinking about it every time a friend dies to this crazy disease. It's just plain hard. Sometimes music helps or reading scripture. Other times I just want to scream or yell, but I just don't have the air. Go figure! So right now in this very moment by mentioning our friend Mike, I am at least letting others know how much I care. He was a gentle, kindhearted soul who loved hot rods and fixing old cars to their former glory. I saw some wonderful pictures, and he really had talent. Please remember his family in your thoughts and prayers.

Date Night

Last weekend we actually went out to dinner and a movie. The dinner was really tasty. I had ribs, veggies and mashed potatoes, and Phil had some yummy fajitas. Then we shared a fabulous molten chocolate cake! Then we went to the cinema and watched The Kings Speech which was well acted and fabulous. After the movie, I was in the ladies room when I couldn't stop from coughing in the stall. Meanwhile two well meaning women asked if I was OK or if I was in need of help. First off, I couldn't say yes or no because I was coughing. Second of all it takes a while to catch my breath, so I cannot talk. All I could say was, "Yeah." So when I came out of the stall to wash my hands a very young woman who worked at the cinema kept looking at me and asking me whether or not I was OK. I said yes and kept nodding my head. I was still catching my breath and felt lightheaded. She kept saying that just remember that if I need anything that I could approach anyone with a name tag and that they'll send for help. I was thinking oh no, so embarrassing! Could you imagine that they would send an ambulance or medics to treat me after a coughing fit?! Then she kind of followed me behind me out the door. I immediately went to Philip where he helped me to a chair. That's when I remembered I had left my phone in the theater, and he went back to get it! Fortunately one of the people who worked there had just come out of the theater with it in her hand. I gave a sigh of relief. I realize that the employee in the bathroom was trying to be kind out of concern for me, but I also got a vibe from her that she was uncomfortable which made me feel very uncomfortable. While I did enjoy the dinner and movie, reality hit me just how stuck to home I truly am. Sometimes I feel confined, I can't get off schedule with my nebulizer treatments or my physio. Without them, I will get very short of breath, my oxygen saturations dip and cough for long periods of time to clear my lungs. Thus I must stay close to home.

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