It has been a very busy time in my life here lately. Of course, I am doing lots of things I haven't gotten to do in years!!!! Taking Madeline to eat ice cream, teaching her to hoola hoop and just normal mommy and wife activities. These simple things are so precious and priceless now.
I met with my new "local" nephrologist in Memphis on Wednesday, Dr.Stepniakowski. I will refer to him as Dr. Step from here on out. I loved this man. He was very knowledgeable in kidney transplant patients and was very honest about his limitations with my aHUS. I totally can respect a doctor for their honestly and full disclosure. Iowa, Dr. Thomas, is still calling the shots, monitoring my aHUS levels and will be my main nephrologists, but we needed someone local who could physically lay eyes on me in case something unforeseen comes up. I think the working relationship with Dr. Thomas and Dr. Step will definitely be a positive experience.
I have been receiving Home Health for two weeks now and I love my nurses. We .are using Home Health Professionals and they are top notch! I highly recommend them if you are in the Blytheville or Jonesboro areas. My nurses, Bridgette and Beth are awesome. They are taking such good care of me. Beth administered my first home Soliris infusion this week and everything with the administering of the drug went smooth. No side effects or reactions were noted.
Getting my Soliris to me, well that is a different story. A very long and complicated story. Let's just say it's a good thing I advocate for myself and am on top of things. I won't go into the stressful day I had with the Specialty pharmacy, trying to get the Soliris to me. I pray since it was the first delivery, all of the kinks are worked out and I pray next time things go more smoothly. I am cautiously optimistic and I know God has His hands in all aspects of my life and he will see that I get my drug. So, everything is going to be okay. I am blessed to have this drug. It keeps this kidney happy and healthy!
I had an awesome and quite rare opportunity this week as well. My friend, Michael, who I graduated from high school with, got a kidney transplant Tuesday!! I got to go visit him Wednesday in the Methodist Hospital in Memphis. Of course, I had to donn a mask and gloves for precautionary reasons....all the germs in the hospital. But it was such a good visit with him and his sweet family. He is doing great and making lots of urine!!!! He is very tough and actually got to go home today. That, my friends, is how a "typical" kidney transplant goes. In on Tuesday and home by Friday. I'm cool with being atypical. As Lady Gaga says, baby I was born this way!!!!
My labs have dropped from three times a week to only two times a week. So that is awesome news. My creatinine is at 0.9. When I was admitted to the hospital on the day of transplant, it was 15!!!! So all of the lab work is looking beautiful.
Also, while in Memphis Wednesday, I was able to turn in my dialysis machine to the dialysis clinic! I loved getting rid of that. Also on Thursday, the dialysis supply company came to my house and removed all of the left over home dialysis supplies. I loved watching the delivery man load up all of those boxes and take them away....approx 25-30 10 pound boxes! I even have a new, empty room in my house that I get to redesign!!!! Life is so exciting!
So, I am living life, enjoying it and seeing some things for the first time. The best part is I have been cleaning my house like crazy this week.....something I left up to Chris and my mom for nearly 3 years. And it feels really good to be doing normal household chores....never thought those words would come out of my mouth! I also am doing so much more with Madeline and she is soaking every bit of the attention up. It is so exciting to see how happy she is. We all are so happy and so blessed.
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