GREAT NEWS

Many of you have already heard my exciting news! USC has accepted me into their program and my insurance has approved it! Woohoo! This makes me so very happy, and I am so thankful for this latest step toward my dream. It has been a long road thus far, and I have had to learn much patience. Five people have had their lung transplant surgeries at UCSD within the past month and a half. I know two of those fortunate people. They are doing quite well all told, and one is a dear friend. She is so spunky and full of energy now although she has some pain at her incision site still. And she has some drainage tubes as well. But she says it's worth the wait and can't wait to get started in her recovery. We both want to represent San Diego together in the next transplant games! Gotta think positive right?! Been learning about heart centered hypnotherapy and am finding it very helpful. It's kind of like a visualization, relaxation process. It's centering me to my mind and body giving it connection. It has been very liberating. Sometimes people with chronic illness focus so much on the physical aspect of their problems, and the doctors only treat the symptoms.

Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go. Joshua 1:9

This biblical passage has helped me recently focus on being patient and not worrying so much about waiting around for the call or what could go wrong during surgery or after surgery. I sometimes need to be reminded that I am not alone. And that it will happen in due time. It also helps me to have my amazing husband who does all dishes, laundry, vacuuming and cleaning the household now. And I am also grateful to have such encouragement from my family and friends. Went to the farmer's market yesterday, although I was huffing and puffing, I had fun. I was able to catch up with a old friend. It's been beautiful weather here, and it's so nice to be out and a about. I bought a new black & white sun hat at the market. It looks kinda sophisticated and casual at the same time. I know that after transplant, the immune suppressant medicines make one more susceptible to skin cancer. Phil has had his share of pre-cancerous spots removed. I have grown up in the sun myself and in the 70's and 80's I didn't even wear sun screen most days. I have been more proactive in the past couple of years. I just started using SPF 50 now. Gosh I'm getting older. Heehee. Well enough of my ramblings! Will write more soon.

Slowly but surely I am regaining some much needed energy. While in the hospital last month for a much needed clean out, it was discovered that I am severely anemic. My ferritin levels were 5 ng/ml when normal range for females are 12-150 ng/ml. I was amazed that this wasn't discovered sooner! I must admit that I was ignorant of the symptoms of iron deficiency and had to research it on the Internet after a brief explanation by the intern. Thankfully a knowledgeable RT explained the workings of iron and how it helps bind to the red blood cells to produce oxygen. And my nurse printed out at least 20 pages of material for me to read. Some symptoms I was having were chronic fatigue, additional shortness of breath, headaches, hotheadedness or dizziness and feeling irritable or feeling that you cannot think clearly. I have had these symptoms for a very long time. I simply thought that all of these symptoms were do to my CF. So I just want to let other people with CF know about my experience so that they can ask their doctors to test their ferritin levels if necessary.

Crazy stuff. Because my body doesn't seem to be absorbing iron, I may need to get iron infusions periodically as an out patient. I will know more next week when I get levels taken to see if the infusions last month took. But I do feel differently that's for sure. The doctors seemed to believe that even if I decided to take iron supplements by mouth that I wouldn't absorb them. I am so thankful that someone checked my levels for me while in the hospital. There is so much more happening in my life right now it would take a lot to write it all down. Hope to write good news soon...


http://www.nlm.nih.gov/medlineplus/ency/article/003490.htm

Reflections

Thanks for your patience. So little and so much has happened in the past few months. I am still only listed in San Diego. I hope to be listed in Los Angeles real soon. USC wanted me to do some additional tests before they could make their decision. Now I am to meet two additional members of their team before final decision. Once they accept me, then they will need to get authorization from my insurance. And I do have great hope that my insurance will authorize to dual list me. Please send those positive vibes and prayers!

On another note, I recently had a birthday and turned 40 years old. One half of me feels so blessed to be alive right here right now and celebrate! Just like that song written by Mike Edwards sung be Jesus Jones. The band was very popular in the late 80's. Does anyone remember them? And there is another side of me that feels time has totally gone by so quickly like that old cliché. So this has been a month of refection and going back and forth to doctor's appointments and other tests. Sure wish everyone a wonderful summer! Hopefully will have more good news to share soon!

Tired

Just been quite fatigued lately. Kind of a light headed feeling. My O2 saturations are status quo for me, 95-97% on 4 Liters give or take. My blood sugars are in the correct range today too. Just doing the normal things that I do around the house. I did have enough energy to make a yummy lentil soup from scratch today which made me feel useful. Of course life can't always be very exciting can it? When it comes to the day to day stuff, we don't think anything special is happening. Perhaps that's just not true. A phone call from a cherished friend or butterscotch pudding can help make the day special. Sounds trivial. But every little bit helps. I guess that is why people start grateful journals where they write a daily log of what they are thankful for. Such sage advice. Hmmm.

New Team to Meet Part 2

As I look back on last Thursday's meeting at USC, it all seems a bit of a whirlwind. It felt like I was having my annual physical. First thing in the morning, I had an Arterial Blood Gas (ABG), Pulmonary Function Tests (PFTs) and a six minute walk. I also had an X-Ray & CAT scan of my lungs & some blood work. All in all, everything went smoothly in the morning, but I was pretty tired by lunch time. In the afternoon, we met with members of the Lung Transplant Program at USC. Everyone was knowledgeable and forthcoming and knew how to explain things in detail in layman's terms. They were very patient answering our questions and concerns which quite frankly, we found very refreshing and reassuring. Everyone we spoke to was respectful and friendly as well. We could tell the team have a genuine rapport with one another which is definitely a good sign. Now the Transplant Program has to make a decision on whether or not they accept me as a candidate into their program. They will gather all my medical records and interview notes and present my case to their panel of experts. They meet regularly every week. We only received good vibes from all the medical personnel on Thursday, so we are very hopeful. Thank you so much for all your positive thoughts and prayers! Will give another update as soon as I can. Here are a few photos that my hubby Philip took. Will have to sneak a picture of him next time!

New Team to Meet Part 1

There have been many occasions in my life where I have met with new doctors or been to a new hospital to receive medical treatment; however, it has been many, many years since I have done just that. UCSD has been the place where I have been cared for by amazing doctors, nurses, respiratory therapists, nutritionists and social workers too. I have been a patient in the UCSD system for so many years now, with the exception of one year living abroad and five years in college when I was a patient elsewhere. UCSD is place where I feel safe, comfortable and well liked. The people who work there are like a second family to me. I know that is crazy to feel that way, but when I have spent my life in and out of hospitals, clinics and etc. That is how I feel.

Now the transplant team in San Diego has referred me to University of Southern California to transfer my double-lung transplant listing status. By the grace of God, I have survived a massive hemoptysis (hemorrhaging from the lungs) about twelve years ago. During that crisis I received the best care at Stanford. I had bronchial embolizations and several blood transfusions in which I did acquire antibodies. These antibodies are perfectly harmless, yet when needing any kind of organ transplant, the donor must match one's blood type, plus antibodies and etc. OneLife organ procurement region covers Los Angeles & six other counties. In theory that gives me a greater chance at receiving donor lungs that would be my match. So onto a new adventure, meeting a new lung transplant team and hospital. My appointment is on Thursday an all day affair. We are spending the night on Wednesday in a motel, so we won't miss my first appointment at 7:00 AM. I would ever be so grateful for your positive vibes and encouraging prayers!

I had a vivid dream last summer about going to Los Angeles for my transplant to the county where I was born. In the dream, I was directed three times by a firm voice to go to Los Angeles for transplant. Then I woke up. Perhaps it was an angel or my subconscious. It was one of those dreams I would normally listen to, but I was accepted last year to the UCSD Transplant Program. I put that dream to the wayside. Now that they have referred me to USC, I strongly sense my dream is becoming a reality. I feel this is the direction in which God is guiding me. It gives me comfort knowing this. Has anyone ever had a significant dream like this?

Home Sweet Home

It is a huge relief to be home from a three week hospital stay! All in all my clean-out/tune-up went rather well. The IV tobramycin and merropenem seemed to actually help this time. And the PD&P four times a day helped tremendously. My spirometries are not too much different than when I started but overall I am pleased. At this point in my life, I am simply maintaining what I have now. I still dream of the day when I can dance and swim again, but I also want to work and travel after transplant. I have this real need to go exploring both at home and abroad. I love watching travel shows and the history channel's stories about national parks. I think it would be so wonderful to drive cross country either in a small RV or car and visit all the different national parks and California state parks as well. In the meantime I can dream while I run errands with my husband or listen to the birds sing in the back yard or visit the beach and watch the waves flow.

Having a CF can be a blessing and a curse. I have learned so much about myself and who I want to be. But a dear friend passed away just a few days ago from CF. Jackie was one of my former campers from Camp Pillfeather, so I remember her from when she quite young. She grew into a remarkable young woman with a wonderful laugh and smile that was contagious. She was amazing. I hadn't seen her in person in years due to cross infection issues, so we kept in touch through email and facebook. I am so tired of losing friends to this disease. Jackie will always remain in my heart forever!