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TVDinner
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Fri Sep 28th, 2007 02:09 pm |
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Shay's now has a blog at TVandDinner. Have fun!
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shay
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Posted: Sun Sep 30th, 2007 04:15 am |
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Thanks for making this blog for me. I don't have time to post right now, but I will soon! Thanks again! 
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shay
Super Moderator
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Mon Oct 8th, 2007 10:46 pm |
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I finally have time to post!! I just went to my 3rd transplant evaluation Thursday and Friday...I think I'm going to just copy and paste what I wrote on another site. If you have any questions, feel free to ask!! I like to spread the word about kidney disease and dialysis!
I am 20 years old and have had End Stage Renal Disease for about 2 years now. (If you would like to learn more about what it is, you can read about it on my website or you can just ask whatever is on your mind here.) I wanted to talk about what has been going on with me and this disease. First of all, it is life-threatening...actually, I don't even think that is the right word for it. I am on dialysis...a form of life support. Without dialysis, I would have died when I was 18 years old. The only other choice is getting a kidney transplant.
Most people are born with 2 healthy kidneys and never think about it twice. Some people are born with one kidney and live their whole lives never knowing it. Others, like me, are born with kidney disease that causes your kidneys to fail. On top of that, i was born with only one kidney. The disease I have is a very rare form or renal dysplasia.
Now a transplant can come from a deceased person as long as they have signed their donor cards before they died, or a living donor. Like I said previously, people can live their whole lives healthily with only one kidney. In order to get a transplant, one must go through rigorous testing to make sure that they are healthy enough to get a transplant and keep it healthy. Then they go on the national waiting list. The wait time in each different place is different, depending on how many people are waiting. I think the average is about 5 years. If one has someone who wants to be a live donor, they still have to go through the testing and be put on the waiting list, but they can get their live donors to get tested to see if they match. If they do, they will be tested to make sure that giving up a kidney won't hurt them in any way, then a date will be set. After being accepted on the list, one could get a transplant from a live donor within a few months!
Now I told you all of that to tell you this. I have been evaluated for a transplant 3 times and turned down twice. The first place turned me down bc they had bad luck with people my age (I was 17 at the time) not taking the meds and rejecting the kidney, therefore wasting a prefectly good transplant. Since there is an organ shortage, this is a bad thing for one to do! So they decided to send me to counseling to make sure that I wouldnt' do the same. They ordered a mandatory 6 months of counseling, which I agree to do. I went to the local Life Management center, had a consultation, and he said there was no reason for me to be there. He tried to tell the transplant center that, but they said I HAD to go through the counseling, so they are still going in circles about that.
The second place turned me down bc I have a blood clotting disorder and had a huge DVT in the main artery of my leg, which is where a transplanted kidney would go. Since I have a blood clotting disorder, I am on blood thinners. So this transplant center is afraid to do the surgery itself on me. They are afraid that either I will clot and die or bleed to death.
I just went to my 3rd eval last Thurday and Friday. It looks VERY promising!! This hospital is one of the top 5 transplant centers in the WORLD and one of the top 3 in the USA!!!! They have done transplants on people in my situation before, so they have no problem with it. I will find out Thursday if I was accepted or not. I have a lot of people who want to donate a kidney to me. I am going to give the number out to everyone who wants to donate so that I will be able to get the most perfect match for me that I can get. Doing this will ensure that the kidney lasts a long time. Since I am only 20, I need one to last as long as it possibly can. Transplants don't usually last more than 20 years, so I will have at least 3 more transplants in my life time, with dialysis in between each.Last edited on Mon Oct 22nd, 2007 09:00 pm by shay
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rompy
Swanson Member
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Posted: Tue Oct 9th, 2007 11:12 am |
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| good luck shay,you deserve it mate
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shay
Super Moderator
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Fri Oct 12th, 2007 06:03 am |
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I was accepted!!!!!
I found out yesterday! I cried when they told me! i have been waiting on this for 2 years and have been turned down twice! I was starting to get discouraged. Now I have to make an appt with a dentist to get my only wisdom tooth removed. (Apparently I'm not too wise. hehe) I already have my friends and family calling to be donors and getting started with that. At this rate, I could very well get the transplant by the new year like I had hoped!!
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TVDinner
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Posted: Fri Oct 12th, 2007 12:30 pm |
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that is fantastic. I am so happy for you
this might be the best news I have heard all week!
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shay
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Tue Oct 16th, 2007 11:48 pm |
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Aw, thanks!! *hugs* Well, my fiance called to get the test kit sent to him. He will be tested tomorrow, but I don't know when we will find out if he's a match. (That reminds me, I need to call a few more people to give them the number to call.)
There is a problem that may stall this whole thing though. That darn wisdom tooth...Apparently the dentists here stopped taking Medicare/Medicaid, so I am gonna have to save up some money to get this tooth out before they will give me a transplant. That's going to be really hard to do, since I am on disability!! Do they think I'm made of money?! *sigh* I don't know what to do. My dialysis center is working on finding a local dentist who will take Medicare/Medicaid or someone to pay for it for me. How embarrassing! :(
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TVDinner
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Posted: Wed Oct 17th, 2007 12:12 am |
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how bad does the tooth hurt? is it very expensive to get it out.
I would donate if you had a place to donate.....
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shay
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Mon Oct 22nd, 2007 09:15 pm |
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Thanks TVD. I think my nurse found a dentist to take me though. (BTW, PMed you back on AF.) They will take my Medicaid. My tooth doesn't hurt at all, but I can't get a transplant without it taken out first. They want to make sure that I won't get an infection from it after the transplant, bc I will be on the immuno-suppressants. Those make it like I don't have an immune system, so any infection after a transplant could really hurt me. It's just a preventative measure, I suppose.
Anyway, I had to pay $25 to get my mouth X-rays sent down from Alabama to here for this dentist. Apparently they don't take their own X-rays. I have a consultation set up for Thursday.
Besides that, William still hasn't been able to get tested, bc things keep coming up that prevent us from going to get the labs drawn. Everyone else who has called to be a donor is told that they will be called back, but they don't call back for days. This whole process is really frustrating!
My grandfather is about to die. I guess I haven't talked about that here yet. He is 75 years old and was diagnosed with brain and lung cancer about 3-4 months ago. At that time, he was fairly healthy. He was still out doing his favorite thing everyday, working on cars. After he was diagnosed, he wanted to get the strongest treatment to knock it out. Well, it knocked him out instead. He lost all of his hair, stopped eating, and can't even walk anymore. He is said to die any day now. I haven't been over there to see him in about 3-4 days. I am scared to go over there with everyone being upset about him dying and all. I can't deal with other people's emotions. Plus, I already said my goodbye to him that I am going to remember forever, and I have accepted that he is going to die. I don't see a reason for me to go back over there torturing myself, watching him pee on himself and hallucinate, watching everyone else crying and them snapping at everyone else. The tension there is so thick...I just can't deal with that while I have all this other stuff going on with my transplant.
And lastly, when he does die, we don't have the money to bury him. Well, not actually to bury him. He is a veteran, so the VA covers the burial and the plot for him and my grandmother, but we still need $3,400 for the casket and transportation. One of my aunts has $1,000 put aside on a credit card for him, but that's the most any of us has for it. I don't know how they plan on paying for it all. My mom, other aunt, and grandmother don't have any money saved up at all, and neither do I. I'm only 20; of course I don't have money saved up for a funeral! *sigh* I don't like being a grown up. I want to be a kid again with no worries.
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shay
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Posted: Sat Oct 27th, 2007 09:45 pm |
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So I went to the dentist consultation. I didn't have the X-rays that I paid $25 to get sent down here, so they took their own X-rays and are going to charge me for it. So I just paid $25 for nothing and am going to have to pay for these X-rays on top of that! Grr...
They scheduled my tooth extraction for Tuesday...yes, this coming Tuesday! A LOT sooner than I thought it'd be! I'm nervous! I've never had anything done to my mouth. I've never even had a cavity! So, again, I will be away for a little while. I guess I'm never going to catch back up to Angel! lol.
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TVDinner
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Sun Oct 28th, 2007 04:15 am |
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| you have never had a cavity in your life?? And now you are having a tooth removed. Wow, that is a big jump from nothing to losing a tooth. I hope you are ok!
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shay
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Posted: Sun Oct 28th, 2007 05:08 am |
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| Nope, never had a cavity. I am nervous, but I already have other things to worry about. My grandpa died today, and I am worried that I won't make it to the funeral since I have to have the tooth removed on Tuesday. I can't reschedule the surgery, bc I won't be able to get in again until December. I want to be getting my transplant then. If I have the tooth removed then, then I won't get the transplant until January or so. *sigh* Life just keeps getting harder and harder...
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TVDinner
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Sun Oct 28th, 2007 05:17 am |
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| I am very sorry to hear about your grandfather. If there is anything I can do please post or send me a PM :(
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shay
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Posted: Sun Oct 28th, 2007 05:18 am |
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| Nope, nothing that I can think of. You did your part, and I thank you for it.
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shay
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Sun Nov 11th, 2007 09:18 pm |
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The surgery went well. It was on a Tuesday. I cooked dinner that night too. I guess the pain meds were still really working. lol. Then Wednesday I just laid around the house all day. Thursday was my grandfather's funeral. I broke down finally and cried a lot. I guess it was bad, bc everyone kept asking me if I was ok. I think it had a lot to do with the meds. lol. The next few days I spent running around with my cousins and to and from the dialysis center trying to get my blood thinners back to normal. After they went back to normal and my cousins went back home, I slept for 3 days straight. I was so worn out. It was just too much to handle in one week. Oh, I forgot to mention that my cousin also put a virus on my computer, so William had to reinstall Windows AGAIN!
Hmm...What else has happened? William got his donor kit in the mail, we got it drawn and sent it back. Now we are just waiting to find out if he's a match or not. My 2 aunts have their kits, but they haven't gotten them drawn yet. I am going to call the transplant center one of these days to let them know that I got the tooth removed and ask about my donors.
Well, that's all for now, I guess. More later.
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TVDinner
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Posted: Mon Nov 12th, 2007 12:38 am |
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wow, what a week for you. A lot going on and you getting pulled in a bunch of different ways, both physically and emotionally. Hopefully some of the stress of your grandfather's funeral and the tooth surgery will start to get a little bit better now each day.
And a computer virus - very frustrating!
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shay
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Mon Nov 12th, 2007 03:26 am |
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| Yeah, my life is almost always hectic like this. The only way to prevent it from being like this is to hibernate in my house and take no one's calls. lol. I probably have a pretty interesting blog, huh? lol.
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shay
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Posted: Fri Nov 16th, 2007 05:32 am |
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I'm finally back to myself after all that craziness! *woot* I've got most of my energy back and I'm back to cleaning and running around for everyone else. lol. What a life! 
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TVDinner
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Fri Nov 16th, 2007 05:33 am |
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| good to see you back and up and around Shay!
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fhstechi03
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Posted: Fri Nov 16th, 2007 05:54 pm |
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| great to see you back shay!!!
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