I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: krfm2003 on March 09, 2010, 06:07:36 PM
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Hi everyone! My name is Karen (carebear as my friends call me). I have two beautiful boys, William and Matthew. After a textbook pregnancy and delivery of my first son, my second son decided to throw us a curve ball. ;) At 16 weeks gestation, I was told to terminate the pregnancy since Matthew's bladder was obstructed and the urine could not pass - therefore refluxing back into his kidneys. Two more doctors gave the same "treatment" idea before one finally gave me the option of fetal surgery. After four fetal surgeries and several procedures later, Matthew was born two months early. He started PD at 5 days old. It failed by 4 months. We went on to hemodialysis when he was 6 months old and continued on that for 13 months. I was tested as a donor, but hit a road bump - hello stage 2 kidney disease! :banghead; Needless to say, they wouldn't clear me to donate. A friend of a family member heroically stepped forward and offered hers. Matthew was transplanted on January 14, 2010.
After 19 total surgeries, one bout of peritonitis, two bouts of sepsis due to line infections, numerous hospitalizations for "stroke watch" due to hypertension...life is finally settling down. (except for that stomach bug the entire family had last week - yuck!)
But I just wanted to say HI! :waving;
I'm including a link to Matthew's news story so you can "officially" meet him and our wonderful donor Marie.
http://www.11alive.com/video/default.aspx?menuid=149#/News/Daily+11+%40+7-+%235+18+month+old+gets+a+new+kidney/49906865001/50317397001/68957395001
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Wow,
Welcome to the site! Thank you for posting. God bless you and your family. Especially Matthew. When I hear stories like this it does wonders for me. It keeps me from feeling sorry for myself. If I die today I have lived a good life. This little guy has gone through so much so young it is a testament to his strength to pull through it all. You are a brave soul for insisting on going to term with your child to give him a chance at life.
An inspiration to us all.
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:welcomesign; Karen. Thanks for sharing your story here and for reminding us all that life can be good despite obstacles. Please keep us updated on Matthew and all the best to you and your fammly.
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Thank you for the welcome! He's definitely my little miracle boy. ;D I've learned to never take things for granted because of him. He's just made me a different person all around. He's cool like that. :2thumbsup;
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Congratulations on the transplant!! And welcome to the site.
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Fan-bloody-tastic!!!!!!!!!!!!!!! What a great story, and what wonderful people involved. A big :grouphug; to all of you.
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:waving; Hi Karen,
I am so glad Matthew was able to get through the dialysis and transplant so well. There's another member who has a son named Gavin and he had his transplant right before his 1st birthday. He is now 5 years old and doing great http://www.caringbridge.org/visit/gavindahms - I pray Matthew does as well! Best wishes to you and your family.
Welcome!
:welcomesign;
okarol/admin
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I was on a mixed emotions when im about reading your posts Karen, you inspired me a lot.
But i must admit so sad and pity on my son, to be honest all of you lived in a nice and good government with high standard of living, insurances for those who are sick.. In our case here in the Phils. life is too hard. Sometime i cant afford to buy medicines for him and even food for him to eat. Sometime i feel that life's too unfair. I hope and I wish and pray that God continue to touch people for his incoming dialysis, to help us in our expenses.
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Espie,
I'm sorry things are so tough on you and your son. :cuddle; I've had my case of hopelessness too. I think we all do at some point, both patients and caregivers. My son also has a vesicostomy (urinates freely from a whole in his abdomen) and a g-tube (an opening into his stomach for a liquid diet). He won't take anything by mouth. Hasn't since he was 9 months old. :( We've had our share of pain and uncertainty. I've been told to "prepare myself" too many times to count. When a 6 month old infant (4 months adjusted for his preemie age) has a creatinine of 7.2 and a BUN of 110 and a potassium of 8.2...the doctors don't expect much. But I did. I thought if he had made it this far...what would stop him now. I went to get ultrasounds twice a week during my pregnancy. I also went for amniotic fluid infusions to keep him floating and out of cord compression danger. Each time, I didnt' know if I would see/hear a heart beat. Each time I went (even after being infused just days before) he was out of fluid. During one of his fetal surgeries, Matthew developed a bleed. I thought that was it right there. If he can "handle" all of that...so I can. I can fight even harder so that he doesn't have to!
I know Matthew has a great purpose in this world. I don't know if that is to get just one more person to sign a donor card, get me back into nursing school to work dialysis (which I am doing now ;D) or open mother's eyes that termination is just another option...not the ONLY option. One thing I needed during all of this - support! Without it...I would have crumbled into a heap of self pity and never gotten out of bed. I can't be THERE, but I can be HERE. Feel free to email me at any time.
Thinking of you!
Karen
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Hi Karen,
Just wanted to say welcome to the site and thank you for sharing yours and Matthew's story.God bless you and keep you for having the strength and courage to care for your little guy.I think it's wonderful that you gave him a chance at life when others might not have.Take care and God Bless :grouphug;
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Hi Karen,
It's really nice to hear from you. I had a time now coping with my son's case. he doesn't want to undergo dialysis anymore, he told me that he's ready to die and dont want to suffer the pain of dialysis. So sad to hear those words from my son, but what can we do? we ask for help in so many instutions here.. procedures were hard to get financial support from them.... my baby.. i love him so much...
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Welcome....bless you and your family.