Sunday, April 27, 2008
Well I got some news, talked to UCSF transplant coordinator last Friday and basically before being sign up I need to complete one more stage that requires a few more tests, yes a few more test....bring it!
The The UCSF transplant team have a very meticulous protocol when it comes to dealing with patients such as I due to my condition. Sometimes Scleroderma patients may need special assessment on other organs specially the esophagus as at time we may develop some motility problems and reflux conditions. This need to be address before giving the flag for transplant as to know how critical it can be and how they need to approach finding the right therapy to solve any possible scenarios.
What happens here is that when you have motility problems the muscles of your esophagus do not move food properly down the tube to your stomach and then while having acid reflux aspiration can send some of those acids into your lungs. They want to avoid any of this from happening once you have a set of nice new lungs so I will be seeing gastroenterologist that can look into that area and discuss our options. Sometimes drugs can be helpful, sometimes a small procedure may be require.
I do have some small motility function problems on the upper track and some reflux however; I'm not experiencing as some severe cases do problems swallowing food. I'm pretty sure my problems can be control and treated and so the plan is to know exactly what to do.
I will also be seeing the cardiologist and taking a cardio Catheterization Test. I have also been instructed to get updates of a series of vaccines: Hepatitis A-B, Tetanus Shoot, Pneumonia, Skin TB test and Flu Shoot( to me this is kind of an indicative that....YES! I won't say it as I don't want to jinx anything but you know what I want to say....YES!) so I'm staying focus and moving towards my goal. I can't deny that I have moments of questioning my reality but spending time with my girls Kaya and Heather my will, my desire and in some very strange way my sense of duty(with this meaning I feel there's so much I need to do here) tells me it's going to be alright, I'm not done here yet and I know it's going to be tough but I will prevail and there for I need to keep my head up and aim my energy towards success. I have a busy week coming up but I'll stay on top of things and let you know more!
Rock on and Let's go Big!
Tuesday, April 22, 2008
The more vulnerable you become the more you can feel. I tell you for a while dealing with these whole thing was not so much a task but it was taking quite a bit of energy. Not wanting to feel vulnerable and wanting to appear strong now have the same meaning instead of two completely different things.
I went public at work today, after assessing all I needed to continue working and presenting it to my HR dept and my own personal department we were all cool. I had a concentrator delivered at my office and named it RjO2; I now understand why Luke Skywalker always had R2D2 by his side. I tactically installed the O2 tubes to allow me free mobility while using my computer and working desk. I sent a blast to a selected group of people; I mean MHW has become such of big company I now barely know half of the people however; I was lucky enough to start working there with the OG's of the company and I feel myself as an OG too. I e-mailed every OG I new.
The result was truly amazing. The sentences were brief but full of positive vibes; some could not believe I was in the middle of what most people would consider a highly lethal fire zone, fully vulnerable but there I was dogging the bullets with a smile, fearless and accurate movement. I open myself to be vulnerable, to feel pain and to release and instead turned into this massive ball of energy that is bouncing off everything that its being trown at it. I can't explain it but one thing is for sure I'm feeling strong...it is possible the extra oxygen has to do something with it; but really the more I expose myself the more capable I feel.
Tomorrow the doc's have a meting to discuss various cases and mine is provably one of then. When you go to bed tonight visualize me with a new set of lungs and if we ever went climbing, playing music, dancing together awhile back(I don't know I use to do all kind of crazy stuff ) make yourself vulnerable enough so that you can have a really strong feeling that we'll be doing that again; I know I will.
Keep on Rocking!
Much Love, Rowan
Monday, April 21, 2008
I have been going through the evaluation process at UCSF for lung transplant; I have yet to received the OK to be entered in the listings but I'm very hopeful that I will. At this point I have had about 15 different test one of them being a cardiac eco which revealed a bit of pressure in my heart due to the extra work is doing to compensate for my lack of diffuse capacity. It was added to my daily therapy the use of Oxygen 24-7; this was something I kind of new was inevitable.
So far so good I actually feel better; just kind of weird having this cannula in my face at all times but hay it works. Still working and trying to stay super active in any possible way I can without over taxing my body. This its been hard but I'm actually getting better at it. I'm just getting around into the details of some of the fund raisers I like to do and other form of getting all my friends to network with me as I learn more abut all the financial protocols.
I honestly want to thank you all for hanging in there with me. Everyday I get more psyched and I just know even thou its going to be a big kick in my ass that I will come up to the top. I will write more in the days to come and as I get the final results.. I will be be going in for a day exam call a cardiac catheterization, to make sure my heart is in optimum shape which I know it is, this exam is a little more invasive than the eco but a lot more accurate. I'll keep you all posted. Please keep on sending your good vibes and love. Its really working!!
Rock on, Rowan
Dear Friends and Music Lovers,
I first want to say that I hope this note finds you well. It ‘s been a while since OriXa and I decided to take a hiatus from the scene; this was something we all had personally agreed to as we felt we have had a good run for a while and were due a much needed break. Our last release at the end of 2005 “Siembra”, which we were very proud of, seemed to be doing great things for an independent band but, in the end, we were overshadowed by the greater forces of the industry and lacking a strong management team and most of all any financial backing to enable our work to be marketed to reach the masses. “Siembra” did not tap it highest potential. At times we felt sad, frustrated and even angry. Letting go felt very hard but we all took space, went in different directions and decided to focus on our personal lives and interests.
On a personal level, this was no match for what was to come. 6 years ago I was diagnosed with Scleroderma, an autoimmune condition that could potentially take a turn for the worst. I fought the condition with resilience, taking every moment to reflect on life and do my best. On the clinical side I was able to find a specialist who helped me to stabilize the progression of the condition through some severe drug therapy. On the emotional level, family, friends and music played the greatest role in letting me achieve even more stability. I went ahead and pushed forward, trying to live as normal a life as possible.
OriXa was ever demanding and as I started working on Siembra my life was taking another turn…my daughter Kaya was born in April 2003. By the end of 2003 it seemed as though I had conquered my menaces. Kaya gave new meaning to everything. Without her and without the support of my family and friends I think I would have fallen into darkness. As time passed I learned more about my condition and all of its possible scenarios. Undertaking this situation would force me to face the greatest battle of my life.
No one could prepare me for my next chapter. Having stabilized the condition for almost 2 years gave me great hope and I kept on trucking. Early in 2006 OriXa was going strong. We were on the top of things - MTVes was giving us love, we were playing great shows and doing what we love. I was in heaven. Even though I knew I was fighting a monster I was still able to hang in there and do what I was made for, music. Playing great shows with some of our peers, hanging out and playing the Fillmore with Café Tacuba, El Tri, touring with La Maldita, hitting New York, LA and our very own Bay Area. I was breathing it, living it. My life seemed perfect. Kaya was thriving, family life was beautiful and music was there to support me.
Towards the end of 2007 we all started to fade within our circle. OriXa had been at it for almost 13 years, especially Juan Manuel and I. The band and I started to lose momentum and what had begun as a great year was slowly deteriorating, and so was my health. One of the potential issues that could occur with this condition is that it could attack your internal organs. I was diagnosed with a mild form of systemic scleroderma, however, that was not enough to rule out the possibilities for it to turn into something fatal.
2007 began with a strange blue feeling. It was hard to imagine that OriXa would be asleep for a whole year but I was okay with it and it was time to get back to raise my game regarding my condition. I was in it for life so I had to really take the time to focus my energy and pour myself into finding what could make me better. Not having the pressure of the band would give me more time to stay focused.
In April 2007 I started to notice that I was running out of breath rather often. This sensation had started towards the end of 2006 but since I was always a very active individual I didn’t pay much attention. In fact, OriXa’s performances were always praised for the high energy I brought into it. I mountain biked, rock climbed, snowboarded. I never questioned it and convinced myself that I was just a little out of shape. After taking a Pulmonary Function Test it was clear to me that that was not the situation. Reality had struck again. The condition had manifested in my lungs, and a very slow but certain progression was at work. Relentless amounts of tests determined that this was real, and I was put on a new trial of drugs to find the perfect cocktail to stabilize its progression. By the end of the year I had lost 20 pounds in 6 months. This was due to the fact that I had lost 50% of my diffuse capacity, the amount of stretch or expansion your lungs require to function, which makes my body work 3 times as hard, consuming 3 times the amount of calories than an average person. Basically I have turned into a runner without running at all. Breathing has become a very difficult task for me, as I have to move slowly to avoid exerting my system, at times needing supplemental oxygen to keep my oxygen levels up to pace.
I have made peace with my new situation. For awhile I chose to keep it very private. I have now realized that I have actually been isolating myself from the world and from all the things I love. You have to understand that this has not been an easy thing to deal with and that, yes, it took some time for me to come into the light. Feeling angry and pissed off and hoping that I could just take control of it on my own has not been enough. So now I have decided to bring everyone together to help me rise.
A few months ago I started learning about lung transplants and have come to very much contemplate the possibility. I have started to research and found out that I’m a potential candidate for it; I’m in the mist of finding where would this take place but most importantly I’m learning not just about the risks but also the high cost of it, both financially and emotionally. With a transplant costing as much as $800,000.00 this is something beyond what I had ever imagined. Emotionally there’s no parallel. This would not cure me from the condition but would bring me back to somewhat of normal functionality, making me breath hard and strong, allowing me to sing again and, most importantly, to achieve what everyone should have - a better quality of life. Lung transplants are very much at the cutting edge of technology and most people with transplants get to live fuller lives. Within months, in most cases people are back to riding bikes, exercising and having pretty normal lung capacity. Of course, there are lots of risks involved such as rejection and infection, but these are part of the road to take.
I’m writing this to let you know I’m alive, that I miss you all and miss everything I was doing just a couple of years ago, and to let you know what I’m going through. I’m ready to take the leap and I need to create a network of support, emotional and financial and with this blog it is my goal to reach all of you. Dear friends, family, fans, music lovers - help me to brainstorm a plan of attack to make this happen. Let me know where you at I look forward to your words.
Please continue checking in as I will be keeping you up dated with all my findings regarding my situation as well as ways to donate to a fund that I'll be setting up to assist with my medical costs. They say you have to choose your battles, I had not choice in the matter but I'm in full battle mode!
One Love, Rowan “StoneFly” Jimenez