EMR, for those of you who don't have a chronic illness or visit medical professionals on a regular basis. This means Electronic Medical Records. My medical journey did not begin recently and this is not the end either. Here is my medical story, so far...
In January 2015, my friend CB took me to the emergency room in Clovis because I had a weird stomach thing that wouldn't go away. They prescribed me some high amount of antacid and it eventually went away. That is not the main story. My blood pressure was through the roof while I was there. Something like 230 over 110 or something, which is way too high for someone my age and build. I had actually lost some weight and had been going to the gym for about a year at this time. The nurse and the doctor in the ER told me to get it checked ASAP. I eventually did, probably in March.
The doctor I went to was not in a nice part of town and only accepted Medical. She also did not speak English very clearly, which was frustrating. Mind you, I do not have anything against the low income population or foreigners but this was not the ideal situation when you have a medical problem. She prescribed me a few different blood pressure medications until we found one that worked.
After switching jobs, I got new insurance and found a new doctor. I like this doctor at first, although her front office staff was laughable. The doctor seemed competent and well educated, but still did not speak the most clear English. She wanted to find the cause of my high blood pressure, of course so did I. She ordered tests. I had blood work, an ultrasound, and an echo cardiogram to check my heart. Eventually she came back with information. She said, "Your kidneys appear to not be functioning correctly." While she is telling me this, I burst into tears because I know enough medical information to know that is BAD. This doctor has the nerve to say, "Don't worry, it is not a big deal." Boy, she was dead wrong. How does a doctor have the nerve to say that when they are not a nephrologist (kidney/renal specialist?) This was St. Patrick's Day 2016 and I was currently dating Boy #2. After this doctor appointment, I went to his house and cried a little. He was supportive and comforting, which made me feel much better. We will discuss him later.
I was then referred to Fresno Nephrology Group, thank goodness. I was looking for answers and incredibly stressed about everything. The new doctor was great. Full of information and did not speak to me like an idiot or child. He confirmed that I did in fact have Chronic Kidney Disease. He added Vitamin D to my regimen and a second blood pressure medication for swelling. This doctor said I would need a new kidney in 3-5 years, since everything looked stable.
Things slowly declined in my kidney function from then on. I have now had three nephrologists. One in Fresno, who is again my specialist, and two in Phoenix. The first one I saw in Phoenix was awful! The second one I found has been my favorite doctor ever! If you live in the Phoenix Metro Area and need a kidney specialist, find Andrew Cortez with Arizona Kidney Disease and Hypertension Center. He is absolutely amazing. While in Arizona, I also had a vascular surgeon for an AV Fistula was also great...but more on that subject on a different day.
So, I am currently at 17% kidney function with high potassium and high creatinine. Your kidneys work as a filter for your body. Mine are not filtering out all of the crap. As the function declines, I feel more tired and kind of weak. My skin has also taken a bit of hit. I now take two different blood pressure medications, sodium bicarbonate (baking soda), birth control, and vitamin d. This is not a lot of medication compared to other people with Chronic Kidney Disease. The disease usually comes hand in hand with something else like Lupus or Diabetes, but I am fortunate to be healthy other than my malfunctioning kidneys.
While in Arizona, I had almost complete my transplant evaluation with Banner Health. At the end of September, personal things came up and I could not stay in Arizona. It was a better decision to move back to California with friends and family. I lost all progress I had made with that transplant team. Fortunately, I have been referred to University of California San Francisco Transplant Center. Which I hear fabulous things about.
Last Friday, the day after Thanksgiving I received a letter from UCSF stating that I had officially been added to the transplant list on November 20th, 2017. Thank goodness. I was so grateful when I read the letter. I almost cried.
Now for the best part. Waiting. Just kidding, I hate waiting. I am not a very patient person. I never have been and don't think I ever will be. I now wait for the transplant center to call for more testing. Then my possible donor has to complete the same testing. Thank you MHY for your offer and for everything.
My medical journey will never end. There is not a cure for Chronic Kidney Disease. A transplant or dialysis (God forbid) are just treatments for longer life. The average donated kidney lasts 15 years. After receiving, a kidney you must stay on immunosuppressive drugs to avoid rejection for the rest of your life. These drugs save your life, but they have horrible side effects. I am hoping to be lucky and not endure any of those side effects like weight gain, cystic acne, or hair growth.
I do not know the future and that is a daily struggle for me. It is the great unknown and it terrifies me.