My Day of Stress

My alarm went off at the obnoxious hour of five in the morning and Mike Dunne and I were on the road by 6:15. As it turned out, I wasn't actually scheduled to begin testing until 9:00 a.m., not 8:15 a.m. as I was told, but of course, I didn't find that out until we got there. The nuclear medicine stress test was first on the agenda. The test is broken up into two parts with second scheduled for four hours after the first was finished. Not surprisingly, it was once again like a party in the procedure room, which was literally not much larger than my bathroom. There were a total of five of us crammed in there like sardines...one doctor, one medical student, two nurses and myself. The doctor was a cardiologist who was there to make sure nothing horrible happened. He reminded me so much of my friend, Chuck, that he immediately became Dr. Chuck. Super Tall Med Student was just there to observe, but his presence was unsettling as he never sat down and sort of loomed over everyone from the center of the room. The EKG nurse looked exactly like the woman who played Bret's girlfriend on a few episodes of Flight of the Conchords, and the other nurse was a bit older and was in charge of placing my IV and a giving me the medicine. I liked her. She had a calming Grandma-like quality about her that proved to be extremely helpful. She was also very informative and explained the process thoroughly.

The test would begin with her placing an IV which be used to administer the drug, adenosine (http://www.drugs.com/pro/adenosine.html), over the span of six minutes. Halfway through, I would be given an isotope called thallium (http://www.americanheart.org/presenter.jhtml?identifier=4743). Grandma Nurse also detailed all of the symptoms I may or may not experience including dizziness, shortness of breath, rapid heart rate, knots in the stomach and throat, tightness in the chest, nausea, and in rare cases, heart attack, stroke or sudden death. Um, what? Let me just tell you how much fun it is to sign a release form for a procedure that may result in sudden death!

After this tutorial, my IV was in place and the adenosine was flowing. I felt the symptoms almost immediately, but luckily, sudden death wasn't one of them. My heart felt like it was trying to escape my body, I found it difficult to catch my breath, my face was all flush and there were knots in my stomach and throat. I also got a not so pleasant metallic taste in my mouth when the thallium was injected. Thankfully, Grandma Nurse gave me a stress ball to squeeze and reminded me often to take deep breaths, both of which eased my symptoms considerably. Bret's Girlfriend also helped by entertaining me with stories of barfing and fainting patients. Before I knew it, the six minutes were up, the medicine was stopped and my symptoms disappeared as quickly as they had arrived. I was then directed across the hall where an MRI-like machine was waiting for me. Over a span of about 20 minutes, this machine would take pictures of my heart from every angle imaginable. Afterwards, I was instructed to return in four hours to the pseudo-MRI contraption for more heart pictures and was sent on my way. Overall, the stress test was definitely tolerable, but not something I would like to repeat anytime soon.

My next stop was an abdominal ultrasound with none other than Grumpy McNo-Fun. That's right, I somehow managed to score a second round with everyone's favorite ultrasound tech. This procedure lasted about 20 minutes, and with the exception of feeling like I was interacting with my shoe and Grumpy's occasional poking at my ribs like he was digging for some variety of buried treasure, it was relatively painless. Then it was off to my chest x-ray with Dallas, yes that is his actual name, which was by far the easiest part of the day. I have had no less than a gazillion chest x-rays in my day and Dallas was both chipper and efficient, so it was a breeze.

Finally it was time for lunch. I wasn't allowed to eat anything prior to by morning tests, so it had been close to 18 hours since I had had any sustenance. I was dangerously close to eating my jacket. Jen and Zoey were also meeting us, so it was a fantastic way to spend my two hour break. The time went by entirely too quickly, though, and I was soon back in the heart camera thingy for the final stop of the day.

While it was an extremely long day, I am super happy to have a handful of tests over and done with, and to be a few steps closer to getting back on the transplant list. And it gave me a very good reason to have cereal for dinner and to be in bed by 8:00 p.m.!

My Setback

Dr. Cool Whip and Epogen Denise had decided on a relatively low dose of Epogen to get things started. My blood work and biopsy had both shown that when it came to red blood cell production, the kidney just needed a little boost. It seemed reasonable, then, to start with one 40 mcg shot once every two weeks. I was to give myself tow shots then get blood drawn on the week between the second and third shots. Epogen Denise called me last Wednesday with some discouraging news. My hemoglobin had dropped two points to 7.5...kind of the opposite of what we were going for. A healthy woman's hemoglobin should be between 12 and 14, which puts me at a dangerously low level. A low hemoglobin means the heart has to work that much harder to get everything where it needs to be, making heart failure the biggest risk.

To say I was shocked by this news would be an understatement. In the past few weeks, I have noticed a dramatic difference (for the better) in my energy level and more than one person has mentioned the return of a normal color in my face. I've also had zero symptoms related to a low hemoglobin level...no dizziness, headaches, etc. It truly is mind-boggling.

The plan: Since we are hoping that I simply need more of the Epogen, I will be increasing the shots to one per week at the same dose. Denise also wants to check my blood a few days after a shot to see if my body is responding to the medication as it should be. I gave myself a shot Thursday and will get blood work on Tuesday or Wednesday. I am seriously hoping to see an increase in my hemoglobin. If not, I have a whole other ball of wax to deal with. In the meantime, I am supposed to keep an eye out for symptoms - chest pain, shortness of breath and dizziness are the big ones - and go directly to the ER if any should arise...do not pass GO, do not collect $200.

My Strength

"Sometimes, when we lose ourselves in fear and despair, in routine and constancy, in hopelessness and tragedy, we can thank God for Bavarian sugar cookies. And, fortunately, when there aren't any cookies, we can still find reassurance in a familiar hand on our skin, or a kind and loving gesture, or subtle encouragement, or a loving embrace, or an offer of
comfort, not to mention hospital gurneys and nose plugs, an uneaten Danish, soft-spoken secrets, and Fender Stratocasters, and maybe the occasional piece of fiction. And we must remember that all these things, the nuances, the anomalies, the subtleties, which we assume only accessorize our days, are effective for a much larger and nobler cause. They are here to save our lives. I know the idea seems strange, but I also know that it just so happens to be true." --- Stranger than Fiction, Zack Helm

I am both amazed and overwhelmed at the outpouring of support and encouragement I have received in the past few weeks. From coworkers, neighbors and acquaintances I barely know, to best friends and family I've known my whole life, and everyone in between, your acts of kindness, concern and love have meant more to me than I can ever express. And rest assured, no gesture, no matter how small or seemingly unimportant goes unnoticed or unappreciated. Each and every one of you are in my thoughts daily...you warm my heart and give me strength.

My Other News

Not long after the biopsy, I managed to get the Epogen fiasco sorted out. After getting the run-around and playing phone tag with Fancy Home Delivery Pharmacy, I was finally able to get this shot-giving business underway. I was pleasantly surprised when it actually arrived, as promised, the very next morning and highly entertained by the packaging. My two pre-filled syringes, four alcohol swabs and mini-Sharps container was delivered in a box large enough to fit a small TV. After having a good laugh about that, I opened the first syringe and got down to business. Admittedly, the first go-around was a bit shaky. It had been almost 12 years since I had done it and I was more than a little nervous. I made it through, though, and the second shot, two weeks later, was a huge success. Who knew that self-injection was just like riding a bike? So now I wait another week, get some blood drawn and see if we need to adjust the dosage or the frequency of the shots. In just the past couple of days, however, I have noticed a big difference in my ability to focus and how tired I feel at the end of the day. It is definitely a change for the better and I am looking forward to seeing what my labs show.

My First Steps

Just as I was beginning to think Dr. Cool Whip had forgotten about me, I got a call from Hershey's Transplant Team. They were calling to schedule my preliminary evaluation appointment and I had two choices: I could go to the clinic here in State College in freaking January or I could go to Hershey on November 12. The earlier date was the obvious right answer even though I was slightly irritated that I was only given two options. I happen to have an appointment with Dr. Cool Whip on November 4 which equals two trips to Hershey in about a week...not really a deal breaker, but an annoyance nonetheless. So, I am all set for November 12 and transplant nurse (I've already forgotten her name) tells me I'll be getting a packet of information telling me what all to expect that day along with some forms to fill out and prescriptions for various lab work and procedures. She also says I need to arrive at 7:30 a.m. and should plan on being there all day. Um, what? Apparently, I have to attend a training session with a bunch of other people who are hoping to get on the transplant list. I will also have some labs drawn and meet with the entire transplant team including surgeons, nurses, more nephrologists, social workers, nutritionists and financial counselors. While I am excited to meet everyone, it seems like an unnecessarily long day. My first thought? " What time to we get to break for lunch?"

I received my information packet yesterday and was instantly overwhelmed. I had a minor internal outburst where I ranted about not wanting to be a grown-up, but eventually convinced myself to plow through the mountains of paperwork. There were the standard, "What when your kidneys fail?" and "What happens next?" packets and even a fancy DVD addressing the same issues. I'll take "Things That Have Been Second Nature To Me For The Last 14 Years" for $1000, Alex. Then came the medical history forms...tedious and time-consuming, but relatively simple and straight-forward. I'm fairly certain, however, that making someone like me list all of their hospital stays and surgeries in their LIFE could be considered a form of torture, and yes, I needed a second page to list them all. Finally, I got to the part that made me close my eyes, take a deep breath and remind myself that this was all just a means to an end, that it was completely necessary and that it would all be over before I knew it...the list of prescriptions and orders.

This list was nothing like I expected. For one thing there were ten freaking pages of orders...10! There were the usual suspects, standard blood work, blood typing, tissue typing and urine samples, but the list didn't end there. Here are just a few of the tests/procedures I have to look forward to in the next few weeks because, oh yeah, they have to be done BEFORE my appointment: TB test, pneumonia vaccine, flu vaccine, hepatitis B vaccine series and booster, abdominal ultrasound, EKG, echocardiogram, chest X-RAY, pap smear and a pharmacological nuclear medicine stress test (I have no idea what that is, but the name alone scares the crap out of me).

My brain tells me these tests are all necessary and that I'll do whatever it takes to get back on the list. My brain also tells me that even though I don't remember it well, I've made it through all of this before. Knowing this, however, doesn't make things any less daunting. I have a long couple of weeks ahead of me and the hardest part is knowing that I could finish all of this testing and training only to be denied. That outcome is unlikely, but I have to be aware of that possibility which makes this process that much more challenging.