Hello my dear friends. Oh my goodness, I cannot believe it’s been practically a month since my last update! Where has the time gone? Well, looking back through my calendar- I was busy meeting with a local printing company about getting some tee shirts made. I then, did some research to find a style I liked and also had to come up with a design. I wanted my kidney logo- the one that is on my fliers. To view this, you can click on the “Donor Tab”. I went with a women’s tee shirt, vintage style lettering on the front left hip with the letters CRTAK. On the back- quite big is the logo and Carmen’s Runway to a Kidney. I am giving them as a gift when people donate to my foundation. Which I am in the process of also getting established. It will be called Carmen’s Runway to a Kidney. Another local company is donating their cost and creating a nice website for me. There will be a link to order the shirts. I am so excited!! That was the last couple of weeks of May…
The first day of June, I attended a class at the new hospital that I have recently switched to for my next transplant. This class was at 9 am and clear across the other side of town. Do you know what this meant? I had to get up like at 7 or 7:30 to be able to leave no later than 8:15 to get there at least 8:45. I couldn’t believe they hold the class this early! These transplant people should know darn well that kidney patients do not get up early. I made it at about 8:30 and sat in the car til at least 8:45. Do you know how long it has been since I drove in “rush hour traffic”? I wasn’t sure how bad the traffic would be so I allowed myself plenty of time.
And of course, I look around the table and I am the youngest person there- feeling like I so don’t belong in this group of people. I was a little bored throughout the 2+ hour class as it was an overview about transplant and what happens. Well, since I had been through it the past year, I had a pretty good idea of what to expect. What I did learn was how the testing is done for living donors as well as cadaver donors- the decisions that have to be made, and how the recipient is chosen to get “the call.” So, the class was worth the time and I was thoroughly impressed with the gal that lead the class-she was very thorough, funny, gave good examples. I found out she is my new nurse coordinator. I am extremely pleased!
My records and the time that I have been on the waiting list all transfers over. I am unsure if my list of potential donors does- I would think so? I may have to re do some tests as it has been over a year since I had them done. ugh! There’s a stress test, chess x ray, EKG, blood work, etc… I am working through this “check list” and getting them done. Then, I ‘ll meet the transplant team & the surgeon. I’m guessing this will occur in the next few weeks?
Also, as of June 1, I joined a rather large part of the “baby boomer” and older population by beginning Medicare. Oh the joys! I now get all these spam emails asking if I wanted a damn scooter, railings put in my home, joint health remedies,hip replacement recall crap– what the hell?? Oh, and when I called medicare to check on my Part D coverage (prescription drug coverage) the agent said something like thank you for calling senior citizens care. I confronted him and said: “do you have say that? I am no where near a Sr Citizen!” He said yes, the does. Well, I retorted- that’s B.S.! Not everyone that has to be on medicare is a Sr. Citizen! Then he replied that canned “i’m sorry m’am” I said, “no, you’re not.” Anyway, I needed to refill my prescription for my coumadin blood thinner and i hadn’t received anything on my drug coverage. I then called Soc Security and my supplemental and surprisingly, no one could find any information that I had filed for coverage. Grrrrr!!! Did I mention this was like 5pm on a Friday afternoon? You know, the nth hour of typical office hours of 8a-5p.
Well, luckily, my neighbor pharmacist is not only attractive, buy very nice. I got a few complimentary pills to get me through the next few days. Yes, it pays to be beautiful at times like this…
So, had my labs done as I do every month. Overall, they’re pretty good. My albumin dropped below the normal range and is now considered low. My hemoglobin also dropped quite a bit and it too is lower than the low number on the between range scale. I now have to get my hormone shot twice a week. Double ugh! My iron has also gone done and will need to have one of those oh so fun iron infusions where I have to go to the hospital as an outpatient and sit there for 4 hours while it drips so slowly. My Dr anticipates this happening in the next few weeks.
Speaking of levels dropping- my blood has gotten thicker and dropped from 2.6 to 1.9. Have no idea why? This is critical for the transplant evaluation and becoming active– it has to be thinned out and between 2 and 3. I just cannot grasp why this happened? My Dr. asked if I changed my diet? I said no- I have actually eaten more salads as that has all that has been appealing to me lately. Eating leafy greens would cause the opposite and thin out my blood more. I cannot express the frustration that I have when things are going so well- my blood thinning, my levels maintaining, then drastic changes happen with levels dropping below the normal range. I just want to scream in anger! Why??
In other good news- my blood pressure has maintained now for what, 4 months? 5 months? I am still taking a half of a pill! My phosphorus and PTH have also been low- now, they’re getting closer to that “too low.” How does one balance all of this? What is the secret?
I am releasing some of these frustrations by relaxing at the pool. This is actually another related frustration- my swimsuits barely fitting me this year because of my stupid hernia (bulging tummy). I did have a creative friend suggest I turn my lemons into lemonade- she suggested I do modeling for maternity clothes. “I’m the perfect, cute pregnant gal” that has a cute little bump and no fat in my face or ankles. Hmmm….not a bad idea! I just may look into it.
So, going back to the topic of medicare- I have to share this story. I’m at the Dr’s office last week for my annual physical. I usually have to wait at least 30 minutes before the nurse even calls my name to come back. It’s a “new nurse” and she has to go through my entire medications list, and many questions that have to be asked each year. After probably another half hr of this, she tells me to put on the fancy robe and the Dr will be in shortly. Ha, yeah right. I fall asleep waiting. A first year medical student comes in, asks me practically the same darn questions the nurse did, checked my vitals. I of course, had to re hash everything as she’s brand new. I love being a guinea pig for the medical students! So, after maybe 20 more minutes (at least) of waiting for my Dr- she does my physical and explains to the student who’s observing my catheter and how I use it, then of course my failed kidney transplant… The Dr decides she wants to check my cholesterol and orders labs. I get to the lab area- they’re closed for lunch. I result to waiting 20 more minutes till they return. It’s my regular lab gal that pricks my finger every week. She’s asking why I am there? I get my blood drawn which she had no problems what so ever. I told her I’d rub it in to my dialysis nurses that have a heck of a time. he he… I’m done with my labs and go to check out. The very nice office lady that recognizes me because I’m there every week, notices on my receipt the word Medicare is highlighted. She asked me, ‘you’re on medicare?” ” Yes, as of June 1st for my End Stage Renal Disease.” She says, “hold on.” Walks away with my receipt. Only a few minutes later, she returns and says: “well, the good news is you get a free physical. You only get 1 for the rest of your life being on medicare. The bad news is, you have to go back to the room and have an EKG.” I then, go back to my same room, the same nurse comes back with the machine along with another gal. I’ll be my nurse’s first patient that she performs an EKG on solo. She tells me that I don’t have to get undressed again, she’ll just life up my shirt. This process takes another half hour and of course, the reading is normal. I was at the Dr’s office that day for 3 hours! I then, had to stop home briefly, do a treatment, and then head to the clinic for my shot.
I just remember a fun day I had a few weeks ago- I went to the mall as I was shopping for a dear friend of mine- she was going to be a judge at the Miss Kansas America pageant and needed a fun flashy belt to dress up her black dress. As soon as I walked into the mall, I run into one of my all time favorite teachers from highschool. She is so thrilled to see me! I had to catch her up on not only my life, my my older brother and the rest of the family. That took a good hour. I found a great belt, thank goodness, (after going into 6 stores) and as I am walking through the mall, I see Frenchie- the nurse that trained me on dialysis. She had colored her hair and she was so glad to see me! I then filled her in my life- the failed transplant and other things…she was very sad to hear. She couldn’t believe how good I look. I told her- people keep telling me this. She worked in the dialysis nursing field for many years and most patients don’t have that good of coloring in their face.
After the mall, I meet up with my boss briefly and then we go to lunch. We opt for Olive Garden- craving their salad. We walk in the door and low and behold, there’s my dad. Ha! I run into 3 people i know that day- I couldn’t believe it!
I am working on another fun business adventure- I really cannot leak any details on it just yet. Will let you know when it launches successfully. I also chopped my hair- I have a bob, it barely touches my shoulders. I have had so many compliments. People tell me, now, I look mature. Yes, I’ll have someone take a pic of me soon.
Well, it’s now 12 am- I’ve been literally typing for an hour and a half and my writs hurt. So, I’ll will close.
Just wanted to remind you and encourage you to donate to my foundation. Send me a personal message with your mailing address so I can send you the order form for the tee shirt. I accept cash and check for now. Will try to get the sample of the shirt posted and maybe add a tab for the order form?
Thanks always for the encouraging words of support, the love you show, and the dedicated prayers!