So here I sit waiting for my treatments to be over. As I sit I'm thinking of how much longer I'll have to wait until the heat & humidity break and I'll feel better. Then I wonder if I'm really just waiting for the perverbial shoe to drop and face another exacerbation. Lying beneath the surface of all this I'm still waiting on my big trip to NC to get evaluated at Duke for lung transplant. And last but certainly not least I'm waiting for new lungs. This is the hardest kind of waiting of all.
Why is this waiting hard? Well the eternal optimist in me (although sometime's her voice has been a bit quiet lately) is hoping these lungs make it AT LEAST another 2 years or so. Really I do think this is possible. But is another five or more possible? Lately my body is giving me signals no. Not to be a Debbie downer or anything but my body is just getting more tired of fighting. My energy level is down quite a bit from my late 30s. Of course maybe it's just that hitting 40 means things start falling apart a bit anyhow. But way down deep I'm feeling that my lungs are like an old junker car that you love and keep gimping along but really needs replaced with a new model.
Of course the yogini in me says hey enjoy the wait and live in the present moment. That voice needs to yell at me a little louder too by the way. But sometimes even though I know that's the truth it's hard to listen. And to be honest sometimes you need to feel a little bummed about the realities of what's going on, admit it, embrace it, and then move on. I guess writing this blog today is my way to do that. It's OK for me to be tired, OK to feel frustrated by being so tired, OK to need to vent, and eventually be OK with accepting all of the above and move forward with the rest of life.
For now I'll wait for that acceptance phase and hope as always for the best. Thanks for listening.
Thursday, July 22, 2010
Sunday, July 18, 2010
Such a good time I forgot I had CF
Well kids it's been a fun weekend for sure. Some of our dear friends were in town for the Umphree's Mcgee show downtown in Indy. At first we thought only 2 were coming but it was even more fun having more last minute. Linda, Mitch, Jodie, Steve, Dave, Will, and Robbie are friends we met in various ways through Jamcruise (see Soul Vacation post for details on that one). Having them in town made me realize two important things. 1) How lucky we are to have such cool, fun, and caring friends and 2) that I need to not let my daily struggles make me withdraw from such wonderful people.
To be honest lately it seems that I'm getting to be too much of a homebody. But this weekend was different. Last night was the perfect night out. The concert had great lighting but even more exciting was the lightning in the sky. Seems like the lighting tech had control of it somehow and coordinated it with the music. The wind brought awesome breezes and AMAZINGLY it only sprinkled once for a short time. Basicially the best weather ever for a show. Saw a group of our local friends at the show and later at the American Legion for an afterparty. Again, definately need to get our more. Had so much fun and energy that I really felt like my old self. AND IT WAS FUN!!!
Thanks again to all of my friends and family for understanding those times when I get detached for various reasons. Today my body had CF but my mind and spirit did not :)
To be honest lately it seems that I'm getting to be too much of a homebody. But this weekend was different. Last night was the perfect night out. The concert had great lighting but even more exciting was the lightning in the sky. Seems like the lighting tech had control of it somehow and coordinated it with the music. The wind brought awesome breezes and AMAZINGLY it only sprinkled once for a short time. Basicially the best weather ever for a show. Saw a group of our local friends at the show and later at the American Legion for an afterparty. Again, definately need to get our more. Had so much fun and energy that I really felt like my old self. AND IT WAS FUN!!!
Thanks again to all of my friends and family for understanding those times when I get detached for various reasons. Today my body had CF but my mind and spirit did not :)
Thursday, July 1, 2010
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
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
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