Real Care

I have started with my new PD clinic and things are going great. I feel really safe with this group of medical professionals. Last week, something was wrong with my catheter so we went to have it check out. The PD nurse was so full of ideas and was able to correct the problem. The PD nurses there, are always on call. So no matter what time of day or night, I can reach one of them! That is one thing I never understood about my previous doctors and nurses. To them, it was like after 6 pm and on the weekends you are on your own. I don't think they ever understood that my kidneys do not magically start working when it is closing time for them. I realize everyone needs time off.....that is when you get a backup nurse/doctor to help! It's also nice to have a doctor that explains thing and doesn't give the answer, "well, it's too complicated to try to explain!" Seriously, Med School taught you that???

Anyway we are off to a good start with the new clinic. I will be taking a test in the next few weeks....that should have been done in June of last year before I started PD. This is a very patient specific test and I will keep you posted on that. Even when I am away from this towns careless clinic, they keep me surprised with the way they half did their job.

A New Chapter Begins

I am very excited to be starting over with a new clinic. I believe that this clinic will be more of what I have been wanting. There is a team of nephrologists in the clinic. I have one main doctor but it is comforting knowing there are 4 more doctors with many years of experience. My new doctor is very approachable, explains thing well and is accessible to the patients. I have 3 PD nurses now. One of them is on call at all times. So, I should be able to get someone on the phone if I have any problems. They have many years of experience in PD. I had my first visit with the social worker. She was very nice, explained everything to me and gave me information about different resources I never knew about. The new clinic also has lots of rules (which I like) and actual goals that we will strive to achieve with my dialysis. This is going to be a good change for me. I have only met with them a couple of times and have already learned a lot of things about PD and ways to take better care of myself.

Similar stories

I spoke early on in the blog about a girl I met who has the same exact disease (HUS) as me. We got sick one week apart. Her dad created a very informative blog during the early stages of her illness. So out of the 300 known cases of HUS, now you know 2! She is the bravest girl I know and has really helped me through my difficult periods. You can gain more insight to HUS by reading her blog. You can find the link on the bottom right side of my page!
Love you Lys!!!

March is Kidney Awareness Month

March is National Kidney Awareness Month and March 11th was World Kidney day!!! You can go to the National Kidney Foundation at www.kidney.org to learn tons of information about kidney disease and also find out if you might be at risk for kidney problems.

Love Your Kidneys!!!

My PD machine, my drain bag, my tube and me

My tubing

Lemontini

When life dumps lemons on you, make a lemontini!!! I am living a normal, healthy life....without kidneys! I take care of my daughter, myself, my husband, my dogs, go to church, go to work, volunteer, exercise, go shopping, travel, all of the things normal people with kidneys do. I am determined to live a long, productive life.

I do not know what the future holds as far as a transplant is concerned. I know the countries best and brightest are working on that. But I do know that with or without kidneys, I am going to see Madeline graduate high school, college, get married and see grand babies someday. I am 1 in a million already so why not?

My journey is definitely not over. I will be starting a new chapter in April at a new PD clinic an hour away. Soon I will be traveling to Iowa for some more genetic testing to learn more about HUS.

I hope my blog inspires someone to take charge of their life and/or stand up for themselves and get the kind of health care they deserve. Because at the end of the day, it is your life and your body. So, have a lemontini....and 1 for me, since I can't have one!

God Bless

To Chris

You are the greatest person I know. You have definitely had to live up to the for better or worse and in sickness and in health part. You have had to do things and see things that no husband should ever have to see or do. But you have never complained. You have never made me feel like the dead weight I have felt like. You have always made me feel like a good wife and mother, even when I sat in the chair for 3 months crying. I would have never made it to this point without you. You saved my life twice by getting me to Barnes, you have driven me all over the country for answers, you set up my machine every night, you empty my 10 pound drain bag every morning, you eat a renal diet with a smile on your face, you still told me I was pretty when my hair was falling out, I had gained 50+ pounds, had tubes all over my body, had puke in my hair and wore pajamas for months. When some spouses would have jetted, you held my hand and walked through the fire with me. I am forever grateful for you, your love and your support. You are the best husband a girl could ask for. Love you! JZ