My Health
I apologize for not informing each of you more personally, however each time I have this conversation it is very difficult for me and my heart, both physically and emotionally. It isn't because I don't care for you deeply, but I just cannot handle having this conversation multiple times.
As you likely know I've been hospitalized twice in the last three months and during this second trip they were able to identify what is going on with me. It is a serious, but not necessarily fatal heart condition. I have dilated cardiomyopathy and congestive heart failure. This means my heart is enlarged and weak and has a very hard time getting the oxygen to the parts of my body that need it. My ejection fraction (Ef), which is the fraction of blood pumped out of ventricles with each heart beat, is at 15%. I am told that a healthy heart has an Ef between 50% and 65%. My condition can result in serious fluid retention. In the three weeks before going to the hospital this last time I put on 30 pounds. During the hospital stay I lost 40 and have lost just about another 10 since being discharged Tuesday night.
It is going to be a lot of work for me to fix this and even at the end of the day if I do everything right, I will never be 100% fixed. I must lose weight, which we have all known for years. I am very frightened and very committed at this point in time. I have to slowly ramp up to exercise; currently I measure my exercise in circuits around the kitchen. I have to cut sodium way down in my diet, a daunting task. The average person should have 2000 mg (which is a teaspoon, by the way) and I should be under that and I aim for under 1500 mg. I also have to keep a low cholesterol diet as well as a low caloric diet. Sarah has been very helpful with this, both preparing my meals and calculating the relevant numbers. She is also making sure I am taking the many medicines I now have to take and making sure I take them on time. She has been driving me to appointments, bringing paperwork to and fro for me, bringing me things in the hospital, and getting my meds from the pharmacy. In fact, she's pretty much been an angel throughout this whole ordeal, so If you are happy I am around still, you should thank her and do nice things for her.
Another side effect of both the condition and one of the meds is fatigue; that combined with the limited mobility I currently have, I need to make adjustments to my life. Right now I need to step away from the BAM LARP, as it is too much walking at this point, but I will (knock on wood) eventually return. It would be nice to maybe do a social event on a non-game night so I can still visit and stay in touch with my friends there. I will continue to write for Alliance San Francisco, but will be a medical page for many months, perhaps even years, to come. Expect any NPCs I may play to sit in the tavern. I hope to attend BayCon, but much of it may be you having to come visit me in my room or at the bar. I think I should be able to still attend and speak at my panels as none of them are back to back. I would love visitors at home, but please call first as some days are better than others.
Some people have asked about gastric bypass or lap-band, but with my heart the way it is, I'm told no anesthesiologist would put me under. So, the old fashioned way will be my path.
Many of you have asked what you can do. Gift cards for Lucky or Safeway are always good because sadly eating healthy can be very expensive and with my current budget I cannot by toiletries or things like mouth moisturizers (I am on two diuretics; I have very pervasive dry mouth and I have to restrict my fluid intake). I am laying around most of the day right now, so I would not say no to back/shoulder/leg/etc rubs to help with circulation. However, what can help most in my mind is prayers/good thoughts/positive energy/lighting candles/etc - whatever is your thing; I will need strength, willpower, and support to get through this challenge.
Thank you all for you continued love, support, and concern.
Jim "Sylvan" Sullivan
As you likely know I've been hospitalized twice in the last three months and during this second trip they were able to identify what is going on with me. It is a serious, but not necessarily fatal heart condition. I have dilated cardiomyopathy and congestive heart failure. This means my heart is enlarged and weak and has a very hard time getting the oxygen to the parts of my body that need it. My ejection fraction (Ef), which is the fraction of blood pumped out of ventricles with each heart beat, is at 15%. I am told that a healthy heart has an Ef between 50% and 65%. My condition can result in serious fluid retention. In the three weeks before going to the hospital this last time I put on 30 pounds. During the hospital stay I lost 40 and have lost just about another 10 since being discharged Tuesday night.
It is going to be a lot of work for me to fix this and even at the end of the day if I do everything right, I will never be 100% fixed. I must lose weight, which we have all known for years. I am very frightened and very committed at this point in time. I have to slowly ramp up to exercise; currently I measure my exercise in circuits around the kitchen. I have to cut sodium way down in my diet, a daunting task. The average person should have 2000 mg (which is a teaspoon, by the way) and I should be under that and I aim for under 1500 mg. I also have to keep a low cholesterol diet as well as a low caloric diet. Sarah has been very helpful with this, both preparing my meals and calculating the relevant numbers. She is also making sure I am taking the many medicines I now have to take and making sure I take them on time. She has been driving me to appointments, bringing paperwork to and fro for me, bringing me things in the hospital, and getting my meds from the pharmacy. In fact, she's pretty much been an angel throughout this whole ordeal, so If you are happy I am around still, you should thank her and do nice things for her.
Another side effect of both the condition and one of the meds is fatigue; that combined with the limited mobility I currently have, I need to make adjustments to my life. Right now I need to step away from the BAM LARP, as it is too much walking at this point, but I will (knock on wood) eventually return. It would be nice to maybe do a social event on a non-game night so I can still visit and stay in touch with my friends there. I will continue to write for Alliance San Francisco, but will be a medical page for many months, perhaps even years, to come. Expect any NPCs I may play to sit in the tavern. I hope to attend BayCon, but much of it may be you having to come visit me in my room or at the bar. I think I should be able to still attend and speak at my panels as none of them are back to back. I would love visitors at home, but please call first as some days are better than others.
Some people have asked about gastric bypass or lap-band, but with my heart the way it is, I'm told no anesthesiologist would put me under. So, the old fashioned way will be my path.
Many of you have asked what you can do. Gift cards for Lucky or Safeway are always good because sadly eating healthy can be very expensive and with my current budget I cannot by toiletries or things like mouth moisturizers (I am on two diuretics; I have very pervasive dry mouth and I have to restrict my fluid intake). I am laying around most of the day right now, so I would not say no to back/shoulder/leg/etc rubs to help with circulation. However, what can help most in my mind is prayers/good thoughts/positive energy/lighting candles/etc - whatever is your thing; I will need strength, willpower, and support to get through this challenge.
Thank you all for you continued love, support, and concern.
Jim "Sylvan" Sullivan