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!

**Sigh**

Just sitting here in the hospital thinking life is simply circuitous. Looking out the window at the dirt movers creating the foundation of the new hospital... Wishing for great health and I won't need to utilize their future services... Bored..... Listening to the news talk about the struggles of the unemployed... Wanting to get this crap out of my lungs.... My mind thinking all things at once.... And being lonely sometimes.... Frustration that I have to call the nurse for my insulin when I usually do it myself at home.... Thinking when will I get that call for transplant.... And where will it be from, LA or San Diego.... That's what it is like being alone in a room in the hospital.

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!

Tough Night

Had a difficult night. I was coughing too much, upset stomach, short of breath and a headache. Had to crank my oxygen from 4 liters up to 6 liters. Sigh... Needless to say I am so beat this morning! I sure hope that I can nap sometime today. I don't know how other people feel, but I have a hard time napping during the day. Not sure why. All this waiting and thinking is a little too much for me at times. It can be overwhelming, and I am trying not to focus too much on myself. Meanwhile thinking about the people in Haiti and other countries who are living in such horrific conditions. Pray for them every day.  And hope to donate some medical stuff to an nonprofit organization, but I found out that organizations cannot accept medical supplies from individuals. Gosh.  Any suggestions?  Here are some great organizations who do so many caring things for others in need.

http://www.interfaithservices.org/

http://www.irteams.org/

http://www.theirc.org/