There's only so much you can control

Well here I sit again...in the hospital. It's an odd thing being in again. It's somewhat like the movie Groundhog Day. I come home get settled back into a routine and then whamo it's time to check in again. Yes maybe I'm being a bit melodramatic. But I've had five hospitalizations since the end of October. When you start hitting those numbers things just get a little surreal. Life has been such a blur that I even forgot one of the stays. I was thinking "oh this is just my fourth time in" but my mom reminded me of an overnighter and then it was "d'oh" headslap time.  I keep asking the hospital registrar for frequent flier miles but no such luck yet. I'm guessing I'd be platinum elite concierge level by now if they had them.

My past stays were due to cancer complications, surgery, pancreatitis. This time my lungs finally got pissed about being ignored for so long. It all started with night sweats which lead to fever spikes and then pain every time I inhaled. My lungs felt tight, gunky and generally pissed off at me.  I had the choice to try IV meds and steroids at home. But after talking to Randy & my mom decided it was time to "go big" and get admitted.

So today is day six of my stay and things are going very well. I get respiratory percussion treatments four times a day. My lungs are getting really cleaned out. I'm also on some really high powered antibiotics and some steroids. The steroids make me feel a bit manic in that I'm not sleeping well and have lots of crazy energy. Can you say lots of to do lists? It seems there are to do lists & projects all over this room right now. And of course I've only done some because I think of new to dos as fast as I do them (if not faster).

The antibiotics are my biggest cause for concern right now. Yes they are working. However, I'm running out of antibiotics that can effectively fight the bugs (psuedomonas aeriginosa "PA") in my lungs. PA is a very smart germ. Once it has encountered a new antibiotic it learns how to defend itself from future attacks by changing its structure. So as time goes on an antibiotic can become less effective against it and then basically is of no good at all. This is called resistance. Right not I have a strain of PA that is resistant to almost every antibiotic except one or so. This means a few things: 1) eventually this PA could grow out of control and damage my lungs beyond repair, 2) if I am transplanted there is somewhat of a risk of having this PA strain in my sinuses or trachea and transferring it to the new lungs. Either possibility is scary and not good. This realization hit really hard one night after talking to my infectious disease doc. I cried and struggled to come to terms with my own possible mortality.

So much has happened lately and the possibility of getting transplanted down the road has always been a hopeful goal to focus on. If the bad bugs exclude me from that it would be a hard thing to cope with. After a night of talks with Randy, my mom, and friends I felt much better the next day. What I've come to realize is that I'm doing everything possible to stay well and still enjoy life. If transplant happens it happens. If not I'll be prepared for that too. Either way I'm doing all I can and the rest (including this nasty PA bug) is beyond my control and I'm trying to find peace in that. Of course I'm not perfect and yes crying is allowed and frankly an honest expression of it all.

Of course it's not all gloom and doom dear reader. If you know me you know I can try to find a bright side on a dark rock in a dark cave in the pitch black night. Lately I've been in the cave too long but I'm emerging stronger than ever. So here's the upside:

• The PA in my lungs is a small population. So for now it may not be an issue for transplant purposes.
• Considering all the setbacks my body has taken related to the cancer "cure" it's amazing how well the lungs have held up. I mean this is the first time I've done IV antibiotics since December 2009. Thank you lungs!!!
• Duke, where I was evaluated for transplant in August, specializes in transplanting Cystic Fibrosis patients that have drug resistant organisms. They have a policy that I need to be cancer free for two years before transplant. Due to my radical cancer surgery and clean nodes I'm hoping an exception might be made if I need a transplant sooner than that. My local oncologist feels my treatment cured the cancer and no waiting period is necessary.  I plan to touch base with Duke soon to find out their current assessment of my situation.
• This wake up call is prompting Randy & I to evaluate doing some things that we've been wanting to do now. Why wait?

Thanks for listening. There's only so much I can control and the rest will be alright :)

P.S. Right now I'm hoping to get out of here by this Friday Feb 11 or Saturday Feb 12.

In my mind I'm gone to Carolina

First post in a long time. Lots to cover for sure. I've been neglect in posting because of said "lots to cover". Probably because it is such a daunting task. But then I got some big signals that it's time to blog again. First, my wonderful cousin Julie keeps asking about me. Thanks Julie :) Then, a CF friend Piper had a transplant (YEA!!!). I've been following her blog for some time. I realized how much her blog (and others) helped me stay positive about my disease. And then it hit me...maybe my blog is or could be the same for others. So I'm back.

So where have I been lately? First, I've been in yoga teacher training since last March. I took the training just to deepen my practice but may end up being a teacher at some point anyhow. The experience and my classmates & teachers are the most amazing people. Namaste to them all. Of course we have traveled quite a bit too. The horse races in Lexington in April. Camping in Arkansas in June. Etc etc. In fact today we are off for North Carolina to celebrate the 4th of July with my family. Its an annual tradition complete with themed dinners & drinks (Mexican, Carribean, All American), lots of talking and not a lot of sleep. Hence in my mind I'm gone to Carolina (in the words of one of my favorite singers James Taylor).

But there's another reason my mind is gone to Carolina. Lately I've been doing OK but my infections are getting more frequent and more severe. Within the last 12 months I've been hospitalized 3 times and only off antibiotics about 30% of the time. Plus I have a strain of Pseudomonas Aeriginosa that is getting very resistant to antibiotics. Pseudomonas is the bug I grow in my lungs that damages them the most. At the end of April I had my annual check-in with Dr. Reynolds of the Clarian transplant team here in Indy. In light of my recent illnesses and low lung capacity, we decided it is time to proceed with evaluating me for transplant. I'm not sick enough to get listed yet but who knows when another serious infection could put me over the edge.

The evaluation process is a week of medical tests, meetings, etc to evaluate how you would do physically and mentally during the transplant processs. They want to insure you don't have cancer or some other illness that makes you ineligible. It's also important that you and your support network will be able to handle the mental demands that will come. So Clarian started setting up my testing and clearing things with my insurance. Then I got the news; Clarian is currently out of network for my insurance company. YIKES!!! Could it be possible that my center which has been following me for 17 years is really out of network???? We double triple checked it and yes for sure 100% it's true. That may change at some point in the future but right now the only transplant center in Indy is not a possibility for me. It's a total bummer because I really love Dr. Reynolds and think he would be great to have as my doc post transplant.

So the next step was to find out where I could go. In the midwest Cleveland Clinic and Barnes-Jewish St. Louis are the best options. However, I have lots of family in North Carolina and Duke is in network. After lots of thinking, consulting my local docs, and asking questions of the centers via phone, I decided on Duke. It is one of the best centers for lung transplant in the country and has the best pulmonary rehab program. In addition they specialize in transplanting  CF people with drug resistant bugs like my Pseudomonas. Seems like a great fit. The distance will be a challenge but thankfully my insurance does cover travel and lodging up to a certain amount. We will have to relocate for about a month pre-transplant and three months post. Since Randy is self employed and works from a laptop we should be able to manage it fairly well.

My evaluation at Duke will be the first week in August. So my mind has been going to Carolina a lot lately. I'm very excited to meet the team down there. However, I'm also a bit worried that they might do all my tests and either a) find something that would disqualify me, or b) say not only are you a good candidate but due to your Pseudomonas progression we think you should be listed now. Granted I don't think either a or b will happen and I'm guessing they will say c) you are a great candidate and we will accept you in our program and will follow you until it's time to put you on the active transplant wait list.

For all of you that are freaking out about this whole transplant thing, know that I've been down this road before. Back in 1992 I was evaluated and put on the active list here locally. At the time I was in right heart failure and on oxygen 24/7. Exercise and a new drug Pulmozyme saved me and transplant was put on hold. Of course it was a major freak out back then to think about transplant at 23. It's easier now but still a lot to wrap my head around. I'm still shooting for growing old with Randy of course and don't want to leave him anytime soon. But the days are getting harder and my energy level is getting lower. Back in 92 my doctor Mason Goodman talked about quality vs. quantity of life. Of course back then I still wanted to hit 35 because that was "old". Now I'm thinking more and more about quality. I've had an amazing and adventurous life up until now and want to have the lungs to forge ahead even if it's only til 50 or maybe even 60. There are still lots of dreams to accomplish and I'm at a point now where it's time to give back and I need more energy to do so.

I'm fully aware of how really lucky I've been and grateful for it every day. CF has given my a wonderful perspective on life. Also, for having CF I'm one of the lucky ones.  A recent article (http://www.ctpost.com/news/article/CF-patients-live-longer-some-diagnosed-as-adults-531674.php) had another shocking stat. Only 5% of people with CF survive past the age of 40. When you consider that includes people that have been transplanted it's even more amazing. So without transplant I'm already at 41...yes I'm definitely lucky :)

I guess that's it for now. Thanks for indulging me and listening. Now I'm off to Carolina both in my mind and my body.

Peace, love and happy 4th.
Steph