Ever since I was diagnosed with ESRD, Winters have been hard on me. It's funny; before I got sick, I was the dude who still wore his cargo shorts in winter. I didn't mind the cold - but with the severe anemia I suffer from, the cold just stops me dead in my tracks. I really tend to hibernate. I don't like to leave the house unless I have to, and I'm usually bundled up in a few blankets around the house!
So I try to use the winter to indulge all the projects I like to do indoors - I've spent some time trying to keep up with my writing, and working on some ideas for short films I want to shoot later in the year. I also run a small independent company that makes video games, so that eats up a lot of my time.
But still, you get cabin fever - especially when you do dialysis in your own home. I'm waiting with such anticipation for the spring and warmer weather.
On the health front, in the next month, I think we're going to start applying to other centers for transplants. I think a fresh start in a new center is what I need. Hopefully we can get the ball rolling on a transplant for me. I desperately need one. It's getting so much harder, day to day - I read stories about people dying while on the waiting list for organs, and I get really scared that I could become one of those statistics. It scares me because I've got so much more living to do - I've got so many things left to do.... I don't want to get off the train while I'm just sitting around, waiting.
I know it sounds morbid, but it is a real fact and concern in my life. I really am one of those people who's waiting for an organ, or I will die. That's a hard fact to live with, but it also motivates the hell out of me to stay alive!
~Steve
Hi. I'm Steve - you've found my blog. I talk about my experiences with dialysis and transplants all while trying to live a "normal" life. From a young man to a middle aged dad, insight and thoughts on life, love and living with ESRD - tinged with humor.
I really feel for you Steve, my husband was the same never wore a jacket and always had shorts on around the house in the winter. Now he is always cold, I think we own stock in the fleece throw company LOL. The house is always so hot I can barley breath, when I touch him he feels like a dead person (I know that sounds morbid but so true). He hates the cold and snow and he wants to move to Florida so bad, but we can't leave his 91 year old father to fend for himself. I'm not sure how far you are from St. Barnabas in East Orange N.J. but they are supposed to be one of the best hospitals for kidney transplants. I know it is scary knowing you need an organ and you may never live to get it and to live a normal life (or some what normal life). My husband has not been able to even try to get on the list because of his other medical issues and I know he is gonna die before he ever gets a transplant, but I try not to think about that and try to live and love him everyday I have him. I can only hope that will be a long time.
ReplyDeleteVicky, my heart goes out to you, sister. I know how hard it is to look at my husband and wonder what his funeral would be like but, as hard as it is, you can't let those thoughts rule your mind. They cloud your thinking and bring you down right when you need to be at your strongest for your family. Things are always worse than they seem in the middle of winter which is why I'm so glad to have met you. I think it's important for us Caregivers to stick together and support eachother. Would you be interested in forming an online support group for NxStage Caregivers with me? It's an idea Steven and I have been tossing around for a while now and I think there's a real need for it in the community. Well, let me know what you think and above all, keep that chin up, it's always darkest before the dawn.
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Jordan
Jordan, a support group sounds like a great idea. Sometimes I feel so alone, and would love to have people to talk to that actually understand this damn disease. I get so mad when people say stupid things to me, like well he is on dialysis now so he is OK, or, does your husband have a drinking problem. That one I love, I just look at them and and state, "Are you really that dumb? Alcohol affects the liver not the kidneys." It really is amazing that people can ask such dumb things, and even more amazing is that some people just have no compassion. I love your husband blog, I send everyone here to read it so they can understand just what this sickness does to people. I am so looking forward to our vacations next month, the Caribbean always cheers us up!!
ReplyDeleteHi jordan vickie is my mom, I don't know if she told you but not only does her current husband suffer from kidney failure her ex husband.. my dad also has kidney failure, we just found about about a month ago. A support group would be great. Especially since I'm only 19 years old and don't really understand. There's a lot I would like to learn.
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