Hello my dear friends-
Well, another month has flown by and March starts tomorrow. I had wised up and made notes on specific days this month of little things that occurred that would be “blogworthy”
First topic, “Joining LAN.” This stands for Learning and Action. This is a new group through the Heartland Kidney Network that is a mix of kidney patients, social workers, nurses, CMS staff (Centers for Medicare and Medicaid), and a couple caregivers. The whole purpose is to engage more with patients and their providers. Apparently, in some clinic locations, the patients have minimal interaction with their nurses. This is so surprising to me! I am not sure if it’s a generational gap or patients don’t care about their health, or what…? I always have questions for my nurses and/or Drs. In fact, they ask me each visit, “Carmen, what questions do you have for me today?” They have come to expect me to have questions.
L.A.N. had our first kick-off meeting on Friday, February 1 at the Heartland Kidney Conference. I was one of about 5 patients in attendance. I am very excited about this group! We have a very active group because every person likes to speak and share their ideas, thoughts, experiences. I am also excited because I get the opportunity to mentor new patients that start the dialysis process as I will be the go-to person at my clinic. We are in the pre-liminary stages of this group as the official launch of this new program will be in June. Our test market area is St. Louis and then we’ll branch out in all directions from there. We had a follow up conference call last week during the big blizzard that hit KC and it was rather interesting with the phone connections. It was a very successful call- I ended sharing many thoughts and felt really proud. Since I have a great dialysis clinic that provides a monthly educational topic, and gives me a copy of my labs each month after reviewing with the dietician, I have been asked to help encourage other nurses at other locations to offer the same education to engage their patients. I was also asked recently, via email if I’d be willing to be a representative of our L.A.N. group on a national level for the ESRD Network Coordinating Center that provides support for all national networks. I was floored! I immediately accepted the honor in hopes of not overextending myself since I am involved with (2) other groups.
My next subject, “Feb 4th” will forever be burned into my brain. I was wide awake, not able to sleep and had just turned off the t.v. around 2:00 a.m., when my phone rang. I looked at it and it showed “Unknown #”, I knew exactly what this meant. I answered in a rather cheerful voice, Hello!” “Carmen?” “Yes, speaking.” “This is Liz.” Of course!” I say. She lets me know that they have a kidney offer for me. She asks me a few more questions if I had been sick the past couple of weeks, If I had any fevers, if my drain bags were clear… I let her know I had the stomach flu, but did not have a fever. She said that would be okay and that they are going to go forward with the cross match testing. After hanging up, I looked at the phone. I got her call at exactly 2:19 a.m. Oh why couldn’t have it been just one minute earlier? 2/18 is my birthday, and that would be very ironic had I received the call at 2:18 a.m. just 2 weeks before my 37th birthday. Then, I started thinking, I don’t want to be in the hospital nor recovering for my birthday… I took a melatonin so I would get some sleep and started praying for peace to come over my mind and heart. The sun rose and I had several calls to make as well as a few errands to run. I had a clinic appt that afternoon at 3p to have my labs drawn- I notified my nurses that I may not come in; they were hoping not to see me either. One of the important tasks I had to complete was getting my will notorized. Since my dear girlfriend works at a bank, I went to see her. She cried and hugged me. We chatted a little while until I had to go. It was approaching my clinic time and so I headed to my lab appt. The nurses were bummed and surprised to see me. While I was there, Liz called me to give me an update. This is 13 hours later from her previous call. Obviously, something was up because I usually hear from her 6-8 hours later. She informed me that there was trouble getting the blood testing started and she still did not have any results. She also told me not to eat or drink anything else. Oh no! I didn’t eat much all day and now, I have to fast. I kind of knew that this would be it! I have not been told to fast before. Oh my gosh! I am going to have surgery tonight! The anxiety and excitement kicked up a few notches, yet, delusional sleeplessness was also prevailing. I needed to get home fast. I passed out once I got home and then was awoken by another phone call from Liz. With sadness in her voice, she said, “Carmen, I am so sorry, it was a positive match. Don’t give up, because we aren’t. Keep your chin up. We’ll talk again soon.” Now, to educate you all, positive normally means good, right? Not in this case. I need a negative match. Positive match means that the donor and I have identical antibodies and will be fighting each other, not the illnesses. Think of a dead car battery- you need to connect positive to negative. The first thought that hit me was, I can eat! Then, ever looming sadness covered my mind, heart, spirit, and body. I shut out everyone for a handful of days, just didn’t want to talk about that day or my health. I did snap out of it- thanks to a very caring boyfriend who reminded me of how wonderful of a life I have and need to live. Not to mention, I had a birthday to celebrate in a week…
So, it’d been about 4 days since the call, and now, I had to go to the clinic to see my nurses, my social worker, my dietician, and my nephrologist. I just didn’t feel like seeing these people because they’re all going to feel sorry for me and I’m going have to tell the story several times… I don’t have a choice, I have to go. Plus, I knew my labs were not going to be good because of having the norovirus last month which resulted in not taking my meds for 5 days-I was in for a scolding. My nurses always appreciate how honest I am, though. So, after the apologies from not getting a successful match, then came the scolding of my labs. My albumin dropped from 3.7 to 3.5, my potassium dropped to 3.1, my phosphorus went up (this is somewhat good) from 3.6 to 4.2- this means I may have skipped my phosphorus binders or eating too many foods with high phosphorus. The big one they were most concerned with was my potassium. Once it reaches below 3.5 or exceeds 5.5, this can cause heart issues or strokes. So, Dr. asked me what dose of potassium was I taking? I said, “one”. She then called me “Dr. R- that’s not what I, the nephrologist, prescribed you.” I said, “I know. I took 2 back in Sept for a couple months, then when I was in the safe zone again, I reduced it to one”. “No, no, Dr R! You need to take 2 and then, if you get high”, ( I started laughing) and the nurse slugged me. “What? It sounded funny.” She repeated herself again, “when you get high, I’ll change it to one.” I’m smiling…
A topic I didn’t mention in the title was getting older. I turned 37 this year and it’s just a reminder that I’m getting closer to 40 which is “technically the door closing to the child-bearing years.” My mom had all six of us children before she was my current age. It saddens and frustrates me that I’m in this situation and cannot do anything about it. I am, however, indebtedly grateful for a very sweet and understanding man.
I had a pretty low key birthday- I got to pick a place I wanted to dine at, so I chose Carmen’s Cafe. This is an Italian Bistro that also serves Tapas. I perused their menu online so I could see what options I could actually eat since I had gotten a bad “report card” (labs). I chose an entree called Shrimp Carmen. Now, my boyfriend’s name is Tom and he had gone to Cambodia and Vietnam on a mission’s trip a few weeks prior to our first date (1.5 years ago). “Tom” in Vietnamese means “shrimp”. Which is really funny, because “my Tom” is no shrimp- he’s 6’2″ and about 240 lbs. So, this entree I chose, Tom pointed out that I am eating “Tom/Carmen.” That confirmed my decision and I was excited to “eat us.” It was very delicious, too! A nice, light, lemony sauce- kind of along the lines of a scampi…The atmosphere of the restaurant was nice, dimly lit, only 2 other couples there, so we could actually have enjoyable conversation and hear each other. The waiter and overall service was excellent! I would go back.
My next topic- “Snowed In.” For those that do not live here in KC- you may have gotten hit and snowed in yourselves elsewhere… It was something to witness. So, the first round of snow hit on Thurs, Feb 20th- we got 2″ per hour for several hours- all day. It was insane to watch the traffic reports- all the cars getting stuck as they were either trying to get home from leaving work early, or those that had “hitler” bosses and expected people to drive to work. I have to proudly say, I was very glad to be on disability and not have to leave my bed those couple of days. It was nice being snowed in. That feeling tends to wear out after the second day- one gets a little cabin fever. Then, after a couple days of reprieve, we get dumped on again with another foot of snow! Scrolling across the bottom of the news were not only school closings, but businesses were listed as being closed. I had never witnessed this sight before! I wished for a few moments that I was a kid again- eager to go out and play in the snow- building forts or snowmen, or sledding down a hill. One of the houses in my neighborhood built a huge snowman- the buttons were canned goods and the eyes were handles of screwdrivers. Needless to say, I did not take any photos of this epic snow; I did have several friends that did and posted them to their walls. You’d think I would’ve written a couple of blogs by now being snowed in for a couple weeks, sheesh… I did start on this one during that time.
My last topic is a very exciting one- preparing for my trip to D.C. So, I have been a part of this great organization called Dialysis Patient Citizens for about 2.5 years, and I am an Ambassador for the state of Kansas, representing DPC and lobbying for patient’s rights. Each year, DPC, chooses folks to come to D.C. in honor of World Kidney Day, to meet with Government staff and to reward our efforts on behalf of DPC. I have been one of these lucky chosen ones to go this year. I leave next week and I also am going to get to see my oldest brother and his family whom I haven’t seen since prior to my diagnosis in ’08. This will be my first time flying in a plane since I’ve been on dialysis, so I am a little nervous. I have a letter from my Dr. to present to all security and airline staff that I encounter that may give me grief for bringing fluid with me. Tom is also able to accompany me on this trip as he is my caretaker. I told him if security gives me any hassle, I will lift up my shirt and show them my catheter. Tom said, “you will not.” I said, “watch me.” I will be making notes as I know I will have plenty of blog material.:)
Well, I have approached my personal deadline of getting this out by the end of the week- it’s 12:02 a.m. I need to get to bed, too.
Sorry for the novel. Thank you always for your dedicated love, prayers, and support!