I am a 37 year old divorced single mom. I have been diabetic since I was 9 years old. After my daughter was born in 1996, my kidneys began to fail. Due to my diabetes, my daughter was born with AV Canal defect. She had two chambers of her heart rather than four. She had three open heart surgeries to repair her heart. Her last surgery was when she was 5 years old and she has been healthy since then. It took ten years before my kidneys actually stopped working. In April of 2006, I started hemodialysis. I only did dialysis for three months. I had so much trouble with dialysis. The doctor took a vein from my leg to create a fistula in my left arm. It was very small and never worked correctly. My treatments started at 3 hours and eventually they were 5 hours because I needed more time on the machine. My blood pressures were extremely high. The fistula infiltrated several times and I couldn't even do my dialysis on those days. I used three different centers in three months. I was trying to get a schedule that would work with my job. I also had to get the fistula revised several times.In July 2006, I received a kidney transplant from my ex-husband. One day my mother needed my ex-husband to take me to dialysis and when he came inside and saw all that I had to go through, he was tested to give me his kidney. After my last dialysis before the transplant my fistula clotted off.I received a cadaveric pancreas after my kidney (PAK) transplant in 2007. However, it only last about 10 months. I went back on my insulin pump. At the time my pancreas failed my creatinine rose and I was scared that I would lose my kidney too. Eventually the numbers came back down but not as low as it was. Last year (August 2011), the transplanted kidney began to fail. I was told I needed to get access for dialysis. I wanted to do PD so I could continue to work and travel. The PD Catheter was placed in Feb. 2012. I was getting the PD Catheter flushed every week at first. Then we moved to every two weeks, then three. Eventually I was told that I did not need to have it flushed anymore until I was ready to use it. But by the time they were ready to start in August 2012, it was clogged and had to be removed. There is too much scar tissue in my stomach from the previous surgeries to ever use PD again.The doctor tried to place a fistula in my upper left arm. However, by the time I got home from the hospital, it did not work. Two weeks later I had a graft put in my upper left arm and so far it is working fine. Even though it is very tender and swollen. On Wednesday, October 17, 2012 I started back on dialysis (today was my second day!). I honestly don't remember much about dialysis and everything I needed to know and do from 2006. My parents were more involved last time. My mother has a PhD in nursing and she and my father were very involved. They came to every appointment, talked to my doctors, etc. I just did what I was told. Unfortunately, my father passed away in 2009 and in June 2012 my mother remarried. Now that she has started a new life, I hate to bother her with all of my doctor's appointments. She will come with me but I feel like I am taking her away from her new husband. I have been hospitalized many times over the past year since the kidney began to fail. And I hate for her to stay with me in the hospital when she has a new husband at home. Or she will bring him along and I don't feel comfortable with him being involved. Plus we have to make arrangements for my daughter everytime I am in the hospital. My daughter is 16 (junior in high school) and I don't want to worry her any more than I already do. I want her to have a happy childhood and not have to grow up too soon. She already worries about my diabetes. She doesn't like to spend the night away from home. She comes to wake me up every morning and calls the paramedics when she can't get me up. I have a histor of extremely low blood sugars. I will have seizures and pass out. i frequently have blood sugars in the 20s to 40s range. She is such a brave little girl and I just want to live long enough to see her grow up and be able to support herself. She has the rest of this year and her senior year and she is off to college!I am here because I want to be able to take my care into my own hands. There is only so much I can do. I wish that I could do home hemo but i have no partner and my daughter is not old enough. And that is too much to put on a child. I want to learn all I can to survive the next couple of years.
newgrl, to both you and your daughter!I hope you find oodles of support and friendship here.
Oh my, you've been through so much. I applaud you for wanting to learn all you can so that you can care for yourself as much as possible. Anyone with a chronic condition should be encouraged to care for their own needs to the greatest extent possible.Your daughter sounds very loving and thoughtful, and I know you want the best for her. I hope you find this forum to be both informative and supportive. We have many members who have really been through the wars, much like you have. I hope you post often, and we all appreciate your introduction. Thank you!
We are pretty close in age I just turned 38 the beginning of October.My eldest son is 17. I have the same concerns with my kids as you do with your daughter. Welcome
Hi there newgrl, and I think you will find a lot of support here at IHD for your modality. Good luck and hope we can help you in your journey.
Hello Newgrl & Welcome I hope you will have some ease with finding this site & making some friends, sounds like you have been through a lot in your life. I wish you & your daughter the best of luck!God Bless
Hi there,It sounds like you've had quite a bit of bad luck in your life. I've had a mixture of good luck and bad luck. I guess you're doing in-centre hemo right now. I am. I'm not exactly jumping over the moon about being on dialysis, but I see it as a necessary evil one which keeps me alive. My independence has been compromised for now, but in a few weeks, I'll be up and running again. The time spend connected to a machine will be like having a part time job, and payment will be staying alive. Those of us who are on dialysis are lucky that we live in this age. We can still do pretty much most things we did before we were on dialysis. Prior to the second world war, dialysis was a pipe dream, the way a cure for chronic kidney disease is today. I'm also grateful for this website, because I have people not only in the same boat, but we're all in the same corner. It's a pretty crowded corner! Welcome to that corner! Stay as positive as you can. Laugh as much as possible. Take the good with the bad... you'll get plenty of both. I hope you find this website as comforting as I do.
Newgrl! This is a great place to find support!Don't give up on the home hemo. I have Nxstage and I do most of it myself. My husband tapes. Do you have a friend that would be willing to come? Hope things gt better for you.
I Hate Dialysis Message Board
I Hate Dialysis Message Board
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