Welcome To My Blog
Welcome to my blog. I created this blog out of desperation to find a living kidney donor for my daughter. I also want to use my blog to bring awareness to the pain, dialysis patients suffer while waiting for years, for a kidney transplant. I hope, as people visit this place that they will realize how important it is to sign up as an organ donor. In some communities, it is enough to have a sticker on your drivers license. However, in other places, like my province, British Columbia, Canada, you have to be registered with the transplant society. Although this blog does not look like much right now, there will be a lot of information here as soon as I get more proficient in blogging. Christina
posted by Christina at 2:42 PM
16 Comments:
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did you doctor say anything about your blood pressure going down if you lose weight?
I don't know if you are overweight or not, but I do know that if you are and you lose even 20 lbs it can sometimes have a big effect on your blood pressure.
In the meantime, I will get tested if you tell me how. I have no insurance but maybe there is some kidney foundation which will pay to test people?
Can you explain how us USA folks across the border can help? There are probably going to be a lot of Seattle people from DKos who would like to help, and I'm one of them.
Thanks.
Can you provide those of us south of the border with info re: how to help? There are a lot of Seattle-area Daily Kos people who might want to know (including ME!).
Thanks.
I am overwhelmed, you are all so great. For those who have offered to get tested, I am deeply moved.
I was told by the transplant society, that all the testing and, the surgery will paid for by our province. However, there will be other expenses, such as travel for the surgery, and living costs while recouperating. I will handle that by a lot of fundraising.
Everyone who would like to be a potential donor, can contact me privately at c_bore@hotmail.com, so I can give them the number to the transplant coordinator.
Love to you all, Christina
Hello Christina,
My father is Ace and has passed this along to me...I have many many in my address book and will certainly pass this along. I also intend to send it to my working contacts in Canada...maybe we can reach someone that can make that difference. My prayers are with your daughter and your family, good luck and god bless!
Hi guys;
I wanted to let you know that my hopes and prayers are with you always. I will try and keep in touch and I will be sending this to everyone I know. Keep your spirits high we together will find a solution.
Hi;
I will try to explain what happened to my daughter.
She was born with a condition called reflux, this is quite common in young children, and is easily corrected with minor surgery, if detected in time. For her first 6 years of her life, we spent a lot of time in the hopital, and in doctors office, becuse of bladder infections and high fevers. She was usually sent home with antibiotics, until the next occurance. The doctors paid no attention to me when I said that I thought it may be something more serious. She was finally diagnosed in Europe, and had her surgery shortly after. We were told that she had some scarring on her kidneys due to repeated infections, but that they would regenerate themselves. We did not think anything about it, until Nov/2005, when she was diagnosed with end stage renal failure.
Her diagnosis came about by a fluke. She went to her doctor because the pattern of her migraines had changed. The doctor ordered a cat-scan of her head. From the beginning of 2005, the radiology department demanded a blood test to check the creatinin levels, as the dye they inject can be fatal for someone with kidney disease. That is how we found out that Sandra's kidney functions were only at 13%, they are now down to 10%. The doctor told her that her only chance to a normal life is a kidney transplant. While waiting, she needs to be on dialysis.
It takes time to prepare someone for dialysis. To give you an idea, check the links on this blog about hemodialysis, and peritoneal dialysis. They prepared her access for hemodialysis through surgery 3 months ago. However, two days ago it stopped working. She is now in training, at the hospital, for peritoneal. I will be with her in the hospital all of next week, because someone else needs to be trained as well.
I am telling you, she is going through hell right now.
I think this will be enough for you to read for now.I will continue to post often, to keep you up to date.
Christina
Christina, I have sent this appeal out on my e-mail network. Hope you are able to come up with someone.
Winston Smith
Hello, my name is Jeanette and I am Sandra's older sister.
My sister has been my left arm for the past 4 years. My daughter was in a car accident and has sustained a severe head injury. She is totally dependant for all her care. My sister was my daughters caregiver and support person up until she was diagnoised with kidney failure. My sister helped me through some very tough times and I hope that I can be as much of a support for her as she has been for my daughter and me.
Sandra and I just got back from the hospital where she had her first Peritoneal dialysis. When I picked her up before the treatment I was very scared. Sandra did not look good. Since her operation she has been in a lot of pain. When we arrived at the hospital Sandra was trying to tell them that something was wrong and they just were not listening. When the doctor came and was not listening to her either that was the first sign of what a toll this has been for my sister. She began to cry. My heart just sank for her. After some intense discussion with the doctor he began to listen to her and take her seriously.
As she was having her dialysis we actually had a few laughs. Through my daughter's life changing journey we as a family have learned that laughter is the best medicine. There was this gentlemen in the next bed who had told the nurse that he was very tired because he just had 6 hours of dialysis. The nurse responded by saying," ya, 6 hours of dialysis would kill anybody". My sister and I looked at each other with wide open eyes in shock at what she had just said and then we burst out laughing. People say the most darndest things.
When we left the hospital after her second day of dialysis I noticed she had pink in her cheeks again and she seemed more relaxed and was eating more.
My mother and Sandra are leaving today for 5 days at the hospital and then Sandra will be doing her own dialysis at home. When Sandra and I were driving home the other day she said that this weekend is the last weekend she will not be hooked up to a dialysis machine. My heart is breaking for her and her daughter. Kylie has been through so much in the past few years and now it is her mother.
To all who are going through this same journey, my thoughts and prayers are with you.
Jeanette
Ulricka, I am so sad to hear of your situation. I also have b/p problems though I have type O blood. Guess I am no use to you, but I will send your link to people in my e-mail address book. God bless.
Teacher in SC
Hello: my name is Carrie and I have a story very similiar to your daughter's and my heart goes out to her..I don't know if she is still looking for a donor, but I do want to tell you and her not to give up. In May of 86 I was 6 years old and got very ill..after a lot of tests we found out I had reflux. The fixed it, but by the time I was 6 there was too much scarring to sustain my kidneys as I grew up.. needless to say, I became familiar with hospitals and all of that too. My kidneys failed slowly and by the time I was 22 they were at 20% and then declined fast. I started dialysis at 23. It took from 2003-2006 to even get listed (insurance red tape and horrible dr oversight) but nevertheless, I am listed. I had 14 people interested in donating, but were unable to for various reasons. One person was a perfect candidate but a fluke urine test issue cancelled her out-- now 4 years later that same person was retested and a week ago we got the okay from the transplant board. I truly know what your daughter is going through...it is hard to be 28 and feel tired all the time, but still work full time and be home by 7 to manuel exchange so I can hook up to "the machine" (yeah i was never original with it except I always say it in an Austrian accent), but it is her dialysis that keeps her alive and going. Keep the hope because transplant happens and I here it is going to be hard, but great. My prayers are with you and your family. Thank you for putting your daughter's story out there. I think it is important that people understand what kidney failure means and that it is difficult, but bearable. I also think people should be aware that they can be perfectly healthy with one kidnay, and you don't have to wait until you're deceased to give back. Until next time...your kidney story twin. :)
Hi twin:
Thank you for sharing your story with us. It's almost uncanny how similar you, and Sandra's story's are.
Yes, Sandra is still waiting for a donor. How I admire people like you and my daughter. Sandra is handling all the inconveniences without ever complaining...I don't know if I would ever be able to handle all the restrictions. Even the little things,like buying clothes. She now purchase all her clothes in a maternity store, because the sugar in the dialysis is absorbing into her system, and she is continuously gaining weight. However, as you say, it is keeping her alive. I am so happy for you, and hope your transplant goes well. Please, keep in touch.
Hugs, Christina
Hi Christina,
I'm so sorry you are going through this and witnesses your daughter's trials. I also have a son that was diagnosised with end stage kidney failure at birth. Unfortunately our family potential donors had underlying health issues (like me, his mother, having stage two kidney disease). But an unrelated donor (a friend of my aunt that had NEVER even MET him!) stepped up and offered my son a life off a machine. He has been on both PD (which failed with four months of him starting) and then on dialysis for just over a year. He is 18 months old and will be getting his new kidney on January 14, 2010. :)
I hope you find your happy ending soon. My hubby is O+ and was not tested for my son because of work constraints. But, if you daughter is still waiting, he would like to be tested for her. Please let me know!
Hello carebear, and thank you for sharing your story. I can only imagine what it would be like for you to go through all this with your little guy. As tough as it is to watch my adult daughter endure this,at least she knows that it is keeping her alive while waiting for a kidney.
I am so happy for you that you have found someone offering this generous gift to your little boy, and will be praying for your family,and the donor on Jan. 14th.
Sandra is still waiting for a kidney. After reading your post I am very moved, both over your tragic situation, and also over your husbands generous offer.
Yes, we gratefully accept your husbands willingness to be tested.
If you would like to contact me on my email address: c_bore@hotmail.com we could discuss this more private.
Again, thank you with all my heart.
Christina
i have a daugther kimberly 16 years old both kidney been operated many stones taken from here kidney...not she need maintenance medicine,,,were only a poor family and she is needed to alwys see her neprology every two weeks to see the lab test and creatinine ..ultrasound shows there is a little stones left during the operation and now it grows ,,i am so worried coz her right kidney getting smaller,,, i wish there is someone who could help my daugther ,,,
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