My Good, My Bad and My Ugly

Good things come to those who wait, and I have waited an ass-long time for some news that doesn't suck. I was rewarded for my patience Wednesday, when I got a call from Sandra. For the first five minutes or so, she seemed to mention everything under the sun except my MRI results. Eventually, my curiosity and frustration got the best of me and I flat out asked her for them. I instinctively braced myself for the worst as she took a few moments to read over the radiologist's report. My panic escalated slightly when she began by telling me that the MRI was consistent with the ultrasound, showing a small mass hanging out on my liver. Fortunately, the properties of the mass are consistent with what they call a benign liver hemangioma. What is that, you ask? So did I. A hemangioma is classified as a non-cancerous tumor, but that word pretty much freaks me out. I prefer to see it for what it truly is, an abnormal mass of blood vessels that poses no impending doom. In rare cases, the mass can become larger and need to be removed, but there is no evidence that it will lead to cancer. (A quick note to all health care professionals: When giving a patient results to any test that could potentially have life-changing consequences, something like, "Good news," or "It is NOT cancer" are EXCELLENT ways to begin. Just saying.) As it turns out, liver hemangiomas are fairly common in people between the ages of 30 and 50, especially in women, and generally go undetected. At last, I am finally diagnosed with something relatively normal! Sandra said they will want to do an MRI annually to keep an eye on it, but if a panic-inducing MRI is the most I have to worry about, I will take it.

Also on the good news front, my PRA levels came back from the blood work I had drawn the week before. PRA stands for Percent of Reactive Antibodies and is the percent of possible donors my blood was tested against that had a reaction (was incompatible). This test helps predict how likely I am to be compatible with a potential donor. Obviously, the higher your PRA, the more difficult it becomes to find a match. People who have had a previous transplant, like myself, have higher PRAs than those who have not since a transplant introduces a whole new set of antibodies into your system. Still, the transplant team considers PRAs of 20 or below to be acceptable candidates for transplantation. I currently have a PRA of 15! If a kidney became available today, there is an 85% chance I would be able to have it...not too shabby! Once I am listed, they will continue to test my PRA monthly, but so far so good.

You take the good, you take the bad...I was going for the hat trick of awesome test results, but alas, the defense (my body) had other plans. There was one last major test I was waiting to hear back on, my creatinine clearance. I had put off doing this test for as long as possible because it involves a 24-hour urine collection which is a serious pain. But it is one of the main factors in determining eligibility of being listed for transplantation. In the simplest terms, this test measures how fast your kidneys filter creatinine out of your blood. A normal, healthy female has a creatinine clearance between 88 and 128, and in order to be listed, you have to have one of at least 20 or below. Mine is 24, explaining why I still feel relatively good, but doesn't help me out with the transplant process. Even if all my other tests get the OK, I can not be listed until that number is below 20. The plan, then, is to retest every three months until I hit the magic number. Annoying.

On a completely unrelated note, Indian Doctor #2 decided to add another test to the mix, a leg ultrasound. I had a small blood clot in my leg a gazillion years ago, and he wants to make sure my blood is going where it is supposed to in my lower extremities. It shouldn't be a big deal, but I will tell you this, if I am blessed with Grumpy McNo-Fun's presence yet again, things are going to get ugly!

My Team

As if that second day wasn't busy enough, I also had to meet with the entire Hershey transplant team...one at a time.

Sandra, Transplant Coordinator: It turns out that she is only the coordinator before you are listed. I will try not to get too attached.

Colleen, Transplant Coordinator: She is who I will get passed on to if/when I get back on the transplant list. She would then be with me until I receive the transplant.

Indian Doctor, Transplant Nephrologist: Funny kidney doc of biopsy fame.

Mimi: Super sweet medical student who clearly has not been there long enough to become jaded by our health care system.

Indian Doctor #2, yet another Transplant Nephrologist: Why I had to meet two of them, I'll never know. They both told me the exact same things.

Social Worker Cindy: She seemed more interested in talking about her daughter, who happens to be Jen's neighbor, than anything else.

Surgeon Scruff, Transplant Surgeon: He may be the surgical director of the kidney and pancreas transplant program, but he was seriously the scruffiest doctor I have ever met. I am guessing, too, he had just come from surgery as there were questionable spots on his scrubs and he looked as though he hadn't slept in a good three days or so. BUT, he is the only surgeon at Hershey that Dr. Bates knows and trusts, so I feel like I am in good hands...scruff and all!

http://www.pennstatehershey.org/web/transplants/patientcare/services/kidney#fragment-providers

My "Vacation"

Because my next round of test were scheduled over two days, I decided to take a few days off work to stay in Harrisburg and spend my downtime with Jen, Marty and Zoey. When I wasn't getting poked, prodded, scanned or bombarded with questions, I got to push Zoey around in a beer box, watch Glee and the Game Show Network, and release the Kraken with the Laus. This time was a welcome distraction from all of the kidney-related stress and I am so lucky to have such amazing friends.

The first day was a quick visit with a nurse to receive my vaccines and TB test. I really should know better by now than to expect these so-called "quick" visits to go off without a hitch. After getting some information from me and doing a little prep work, the nurse comes at me with the first injection without bothering to either a.) wash her hands, b.) wear gloves, or even c.) use some variety of hand sanitizer. I know it has been awhile since I have had to get any sort of shot, but I am almost positive that basic hygiene rules still apply. So I say to Dirty Nurse, "If you're not going to WASH your hands, could you at least throw on a pair of gloves or something?" To which she replied, "Oh my God, I totally forgot!" I'd like to point out here that directly behind my head was a Purell hand sanitizer dispenser. Directly above that were 3, count them 3, boxes of gloves. And directly to the right of those, was a freaking SINK. Just saying. Despite having skipped Nursing 101, Dirty Nurse was surprisingly quick and efficient with the shots, putting the pneumonia vaccine and TB test in my right arm and the flu and hepatitis vaccines in my left.

Day two got off to a painfully early start. First up was the group information session with Sandra, scheduled from 7:30 am to 8:30 am...exactly one hour of my life that I will never get back. This session was clearly designed for people who were preparing for their first transplant. I, of course, was the only person in the room who had been through it all before. I was given a huge binder filled to the brim with brochures, business cards and more information that you can possibly imagine on kidney transplantation. Still, the only new tidbits I walked away with were that you can now list at more than one facility if you so choose, and that the surgery to extract a kidney from a living donor is now laproscopic, which is pretty cool. Sandra did open with, "It is illegal to sell your organs," however, so I guess it was a total loss.

Also on the agenda for the day: blood work, EKG, echo cardiogram, and MRI. What I thought was just going to be my standard labs, ended up being close to 20 tubes of blood. Completely necessary, but yikes, I was shocked I had any left afterwards. The EKG and echo were done back to back and were quick, easy and painless. The dark room also gave me an opportunity to get a much-needed cat nap. The MRI, however, was a lot more difficult that I had anticipated. First, there was the issue of my piercings. My tongue ring wasn't a problem as I have had to take it out several times before for various surgeries. My Monroe piercing, though, is relatively new and I had only had it changed by a piercer before then. The little bugger proved to be a serious pain to get in and out, but I eventually prevailed. An overly ambitious nurse led me back to the MRI and we were ready to get started. Being my first MRI ever, I didn't know what to expect, but I have never been claustrophobic and wasn't nervous at all. I guess maybe I should have been. As I was being moved into the machine, a crazy wave of panic washed over me. My heart began to pound, I was sweating like it was my job and it was all I could do to keep myself from demanding that they let me out of there. I somehow managed to concentrate on my breathing and on Josh, the friendly MRI tech, talking to me through the headset. After a very rough five minutes or so, I calmed myself down and the rest of the half hour went smoothly. This was Thursday, and I haven't heard anything back yet, but I am doing my best to try not to think about it too much. Go liver!

My Liver?

It is getting to the point where when I see a number with a 717 area code on my caller I.D. and it's not Jen, it takes every ounce of willpower I have to answer the phone. With my track record lately, the chance that it is going to be good news is slim to none, and, frankly, it is beginning to get a bit boring. I got a call from Sandra, the transplant coordinator, a few days after my first round of tests. She opened with, "I am looking at your ultrasound results..." and paused for my response. I couldn't say anything right away because 1.) they never call when everything is fine and 2.) Sandra didn't really have that "I am about to give you some fabulous news" tone in her voice. I needed a moment to brace myself, so I took a deep breath and simply said, "Yes..." She said the doctors had seen "something questionable" on my liver and that I would need an MRI to get a better look at it. Timeout. What?!?! First of all, I have never had problems with my liver. My liver function studies have been perfect since day one. And secondly, what the hell does "something questionable" mean? Is it a mass, blockage, scarring, lesion, density or what? Note to health care professionals: "Something questionable" is not helpful...at all. Sandra had no further information, meaning I would be left to ponder the unknown until the MRI. Luckily, they were able to schedule it on the same day as my transplant evaluation appointment which is coming up this Thursday. As if the day wasn't already jam-packed with fun! In addition to the MRI, this is the day I will meet the entire transplant team, attend some sort of information session and get more blood/tissue typing blood work. I also have an EKG, echo cardiogram, flu and pneumonia vaccines, and TB test scheduled for that day. On the plus side, after Thursday, I will be about 95% finished with my evaluation, putting me that much closer to being re listed.

In other news, I had an appointment with Dr. Cool Whip this week and the kidney seems to be holding its own. My creatinine is still 2.5, exactly what it has been since early June. It doesn't look like the kidney is in any rush to fail completely. He did notice a significant increase, however, in my parathyroid hormone (PTH). Basically, when your kidneys are healthy, they turn the Vitamin D that you eat into a working hormone, calcitriol, which helps increase calcium absorption from the intestines into the blood. When the kidneys fail, they obviously stop doing that, and the parathyroid glands pick up the slack by producing PTH to take over for the calcitriol. (And yes, I had to look all of this information up. There is no way I could remember it all!) While it seems like this would be a great solution, you really don't want your parathyroid glands freaking out either. Dr. Cool Whip thought it would be a good idea, then, to prescribe calcitriol for me in order to take some of the pressure off the parathyroid and lower my PTH. So, with the exception of a high PTH and a stubborn hemoglobin level that refuses to go any higher than 8.0, the kidney is holding steady.

Now, about that liver...

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.

My Website

Ok, so it's not really mine at all, but my friend, Tony, sent me this link to cheer me up and it was way to good not to share. Enjoy!!

http://iheartguts.com/

My Results

I heard from Dr. Cool Whip a lot sooner than I expected. I guess it was karma's way of making up for the fiasco that was the biopsy. I was happy to discover that Dr. Cool Whip, like Dr. Bates, is no nonsense when it comes to giving results. He wasted no time to getting down to business, explained everything thoroughly and made sure to carefully prepare me for what would happen next. For that, he gets another check in the plus column.

The Bad News:
The biopsy showed no recurrence of my original autoimmune disease or any traces of acute rejection (rejection that is usually treatable). It also ruled out the possibility of the BK virus, ( and yes, Dr. Cool Whip did make a Burger King joke here...check in the minus column) which is a virus that can mimic the signs of rejection. While this may sound like excellent news, it unfortunately confirms our theory that we are simply dealing with a worn out transplant, or chronic rejection. It's slightly annoying that I had to go through an ordeal like the biopsy to find out something we already knew, but I don't regret the decision at all. If I hadn't done it and found out later that there was something we could have done to save the kidney, I would have been a super sad panda.

The Good News:
Dr. Cool Whip says my kidney bits showed a crap-ton of scar tissue. Yes, I realize this is technically not a good thing. The abundance of scar tissue, though, proves that my kidney is functioning below the 30% needed to be put back on the transplant list. So, I should be hearing from Hershey's transplant team soon to get the ball rolling on the whole process. Getting on the list is, of course, not as simple as adding your name to the bottom. There will be papers to sign and blood to be drawn, but one that is completed, I can start earning points towards my next kidney. The transplant process is very much like the Bonus Buy card system at Giant. Also, once I'm back on the list, anyone who may want to consider donating can start getting tested.

I know this all seems like a huge downer, and I must admit, it was like a punch to the junk to find out my kidney isn't functioning as well as we thought. But it is a huge relief to be able to get on the transplant list now, while I'm still feeling relatively good, rather than waiting until things get worse. There's also my creatinine, which has been stable since July, meaning the kidney is holding it's own for now. It doesn't seem to be in a huge rush to go anywhere, once again living up to its reputation as a super kidney.

My Biopsy

I should probably know by now than to expect a procedure like this to go off without a hitch. Silly me. For those of you following along, you'll remember that I was supposed to get a call giving me specific instructions and details for the procedure. Had I received that call, a crap-ton of these issues could have easily been avoided. The biggest deal for me was that no one seemed to know whether or not they were keeping me overnight. Dr. Cool Whip said no, scheduling lady said yes, Indian Doctor (who would be assisting with the biopsy) said yes, and Asian Attending Doctor (who would be doing the biopsy) said no. Great. After much debate, it was decided that as long as my post-biopsy blood work looked good, I would be discharged around dinner time.

We definitely weren't off to a great start and we hadn't even started the biopsy yet. After peeing in a cup, getting stuck twice for blood (because Dr. Cool Whip added a little something extra after the first one) and chatting with Indian Doctor and Asian Attending about the procedure, I was wheeled into the biopsy room. I wish someone had told me it was going to be a party in there...I would have brought chips and soda! In addition to the two doctors, there was Grumpy McNo-Fun (the ultrasound tech), Perky Pathologist, and a super impatient nurse who came into the room no less than eight times asking if we were done yet. While I was more than ready to get everything over with, there was still an ultrasound to be done, some sterilizing, numbing and a very entertaining 10 minutes or so of both (probably brilliant) doctors trying to figure out how to put the bed rails down to sit through. We eventually got started and a sample was taken. I was doing really well until I heard Asian Attending say, "Good, just 2 more to go." Umm, what? No one told me that three pieces were being taken! You would think that somewhere along the line someone would have shared that important piece of information. Again, silly me. Add this to the fact that the room's air conditioning was broken, so the room was literally 92 degrees, that Indian Doctor was just learning how to biopsy (ouch!) and that 3 pieces turned into 5 and, by the end, I could have given Grumpy McNo-Fun a run for his money!

All in all, though, the procedure went well. I was wheeled into recovery, asked to keep pressure on the area for an hour and told my blood would be checked in 4 hours. If all was well, I could leave after that. All was not well. I was running a fever and my results showed a drop in my hematocrit which could indicate bleeding on the inside. It was decided they would recheck my blood in yet another 4 hours and go from there. I was actually fine with all of this until they started throwing around the word, "transfusion." Transfusions are the kryptonite of transplants, both current and future, because they introduce even more antibodies into your system making it that much more difficult to find a match. I was not a happy camper and found it impossible to focus or relax.

My second round of labs came back and made a sticky situation even stickier. The hematocrit dropped again, but only a slight .4. So then the issue became should we send her home or keep her until morning? The verdict? They discharged me at 1 a.m. only to have me come back in the morning for more blood work. Make sense? Yeah, it didn't to me either.

It all worked out, though, and the morning blood showed an increase in hematocrit. And despite being sore and tired, I was doing pretty well. I spent the rest of my time in Harrisburg hanging out with Jen and Zoey and having some pizza and Glee with the Laus and Charrons. I should have the results of the biopsy early next week and I am looking forward to getting them. After that, however, I don't want to hear the word biopsy for a very long time!!

My Second Language

It's a well known fact that doctors, nurses and insurance companies speak their very own version of English. To the untrained ear, it may sound similar to the English you and I speak, but I assure the translation couldn't be more different. Now, it has been almost 12 years since I have been immersed in this culture, so my Hospitalese is a bit rusty. Thankfully, within the past week, Hershey Medical and my insurance company have been kind enough to give me a crash course. Here is what I've learned so far:

1. "We will call you to set up a biopsy." Seems fairly straight-forward, but take a look at the translation...
"We'll just go ahead and schedule you for whenever we see fit. Then we'll call to tell you about it a mere three days beforehand, so we hope you have an understanding boss because you are going to need to take about three days off with little to no notice. Oh, and you should probably show up a few hours before your scheduled time because you're going to have a bunch of other stuff done, too. Thanks."

2. "Someone will call you before the procedure to let you know how to prepare and where to go." Ok, most people can figure this one out...
"No one is REALLY going to call you. You are going to spend the day before desperately trying to get in touch with anyone who might be able to help you, to no avail. You will then rely on the internet and hope for the best. Good luck."

3. "Your insurance is going to cover the Epogen!" Good news, right?!?! Not so fast...
"We will cover it, but there's a catch. You won't be able to get it filled anywhere that may be convenient for you...no CVS, no Wal-Mart or Target, not even Geisinger. You're going to have to call one of these two companies, who are then going to need mountains of paperwork and verification from your doctor. Then, if everything is approved, you can call to order it and schedule a delivery time. Oh, and they can't guarantee overnight delivery, so it will most likely be another week or so until you get it. Hope you didn't need it right away!"

These are just a few simple examples. I'm sure I'll be getting into more advanced Hospitalese as the months go on. Feel free to check back often and use this blog as a quick reference guide. You're welcome! :)

My Best Shot

I got a call from Denise. Denise is apparently in charge of all things Epogen related at Hershey Medical. Denise informs me that these days, some insurance companies will not cover the drug if the patient gives herself/himself the shot. Great. Admittedly, it took me awhile to warm up to the idea of self-injection the first go around, but eventually, spending the greater part of an afternoon four times a week at Ritenour wore on my last nerve, and I had to suck it up. After a few weeks of doing it on my on, it became as routine as brushing my teeth. So ideally, I'd like to have that same option again. I would think that it would be more cost effective for the insurance company anyway, but what do I know. I mean, I'll do whatever I have to do to make sure it is covered. Epogen is not cheap and with the state of our health care system today, I am grateful to have the coverage I do. And I'm sure that approval won't be an issue (normal hemoglobin for a woman my age is between 12 and 16...mine was just 9.5 a month ago) I am just very opposed to having my decisions made by an insurance company rather than me and Dr. Cool Whip.

But I digress...Denise says that my insurance needs some blood work before they will approve the Epogen (*eye roll*). So, I'm off to the lab and am hoping this will all be resolved soon.

My Reality Check

An excerpt from a blog I wrote on December 27, 2007:

It's difficult for me to imagine what my life was like before the transplant. The days of four times a day dialysis, Epogen shots and never-ending aches, pains and illnesses seem like an eternity ago, yet the thought of doing it all again makes me sick to my stomach. But the harsh reality is that this kidney won't last forever, and my looming 10 year anniversary has posed some questions I'd just as soon avoid altogether. In searching for the answers, though, I found myself really thinking about the last 10 years...the places I've been, events I've witnessed and, most importantly, the people I've met who've touched my life in so many ways. It's safe to say, that none of this would have been possible without the transplant, and whether this kidney lasts 10 more days, 10 more months or another 10 years, I absolutely need to be careful not to take one second for granted.

So, here for your reading pleasure are highlights from my 10 (and counting) kidney-filled years...the good, bad and the completely ridiculous!

*PSU graduation
*Buying a car
*Corey's high school graduation
*Jen and Marty's wedding
*Becoming a godmother
*Lenny Kravitz
*Cell phones
*Old 97's
*Internet
*Drive-By Truckers
*MySpace
*Wayne "The Train" Hancock
*Jackson
*Poison!
*Corey joining the Army
*Corey in Iraq
*Beauty school
*100 Greatest Films of All Time
*September 11, 2001
*Mets games
*Digital cameras
*The Montel Williams show
*Dukes Fest
*Johnny Cash's death
*10 Year high school reunion
*Co-habitation
*Bermuda
*Piercings and Tattoos
*Texas
*Swing dance
*Sugar Notch
*Salsa
*Scranton
*Reality shows
*Parts Party
*Broken ribs
*Pajama-Rama
*Kristi's Wedding
*D-Dogg 151
*Lost in NYC
*Indian casinos
*Navy Base tour
*Holiday Hair
*Toothless dates

*Jen
*Ian
*Kelly
*Mr. T
*Carrie
*John
*Mike
*Kevin
*Qira
*Jon
*Roz
*Tom S.
*Julie
*Rockin' R
*Ilene
*Kristi
*Norm H. (honk, honk)
*Alyssa

My New Doctor

I knew I had to lower my expectations and standards before meeting the new guy. Dr. Bates had a very old school approach to medicine (in that he focused on treating the patients rather than taking their money) and doctors like him are few and far between these days. I had to constantly remind myself that this guy wasn't going to give me his home number, rearrange his schedule to fit me in or answer questions about my friends' medical issues. Surprisingly, I had no trouble getting an appointment at Hershey. I was expecting to have to jump through hoops, fill out mountains of forms and cut through miles of red tape to get in, but it was relatively painless.

When I arrived for my appointment, I was immediately impressed. For an enormous hospital, the waiting room was quite comfortable and friendly. The people at the front desk were so nice and helpful, too. I know this seems like an insignificant detail, but trust me, it makes a difference. I had to fill out one simple new patient form, pee in a cup, and then I was taken back to an exam room. Besides the fact that the nurse grabbed the wrong chart and tried to make me 46 years old, she was pleasant enough and efficient.

Then it was time to face the music. New doctor came in and I immediately tried to figure out his deal based on his appearance...wedding ring, questionably groomed goatee, glasses, decent haircut. He was warm and friendly, though, and he quickly put me at ease. We began going through my history and eventually got to my pooped out kidney. I made it a point to ask him all of the same questions I had asked Dr. Bates. Yes, I was testing him in a way. I figured if he gave the same answers as Dr. Bates had, maybe I could trust him with my life. He passed.

After a 45 minute visit (unheard of, I know), we had ironed out a pretty good game plan. I apparently can not be put back on the transplant list yet. Kidney function has to be at 30% or below and I am clearly not to that point yet. He does want to do biopsy the kidney to make absolute sure that there is nothing we can do to prolong the life of the transplant. Solid plan I think, and I should be having that done within the next week or two. And finally, he wants to get me started on Epogen...or whatever it is they are calling it these days. Basically, your kidneys are in charge of stimulating your bone marrow to produce more red blood cells. So, when they are failing, you make less and less which leads to anemia and extreme fatigue. Epogen is a shot that you get a few times per week that kind of nudges your bone marrow to make some red blood cells. I'm actually looking forward to starting it because I've noticed I have been increasingly more tired in the past few weeks.

All in all, I was very happy and relieved with my first appointment with new doctor. He seems to know what he is doing and wasn't at all scared off by my unique situation. My only beef? He pronounces the "h" in words that start with "wh". Weird. It's not annoying or distracting, but I found myself trying really hard to keep a straight face at times. I kept thinking about the episode of family guy where Brian gives Stewie a hard time for how he pronounces "Cool Whip"! So, new doctor shall be referred to as Dr. Cool Whip from now on!!!

http://www.hulu.com/watch/11473/family-guy-cool-whip

My Bad News

Luckily, I was at home when he called. I'm pretty sure it would have disaster had I been in any sort of public place. It was the end of July and Dr. Bates had just received my most recent lab results. It seemed that my creatinine (the biggest factor in determining kidney function) had taken a big jump - and not in the right direction. He said he wanted to repeat the blood work to rule out any sort of fluke illness, but that, in all likelihood, we were dealing with a worn out transplant. In the simplest terms, I would have to start the process all over again. I love that about Dr. Bates...he respects my intelligence enough not to sugar coat. Not that he had to. It is made very clear to transplant patients that transplants are by no means a cure - a very good treatment, yes, but not a cure. Cadaver transplants last on average of 10 years, (for the time that I had mine done, it's longer now.) and with me pushing 12 years, I knew this day would come sooner or later. I'm not going to lie, this knowledge didn't make the news any easier to take. I was a wreck. In about two days time, I think I went through every emotion possible. I thought that when this time came, I would be prepared having gone through it all before. I was wrong. Everything is different this time and it feels like the rug has been pulled out from under me and I have nothing to grab onto on the way down.

First of all, I'm starting back at square one, and I have to do it without Dr. Bates. For the past 14 years, Dr. Bates had been much more than my doctor. He has been an adviser, an adoptive father-figure and most importantly a great friend. Now that he has retired, I really am starting over from scratch....new doctor, new hospital, the whole nine yards. And while I know I can call him any time and I am positive our friendship will continue, it's just not going to be the same. Weird.

The other thing that has seriously got me down about all this is that my life is COMPLETELY different this time around. The first time, I was just a kid with no worries, still dependent on my mom and my only "responsibility" was college. Now, I have a life with a job, bills to pay, a cat to feed and love, and fun to be had with my amazing friends. It stresses me out to no end thinking about how I'm going to manage all this things on top of dealing with kidney crap. Luckily, I have bosses who have been and will be incredibly understanding and a circle of the most supportive and helpful friends ever! But there are some things I am just going to have to suck up and deal with and honestly, I think it's giving me an ulcer.

And the last huge difference is that I'm just plain scared this time. People used to ask me about the first go around and say, "Weren't you scared?" And honestly, I wasn't. I was so sick that I really didn't have time to be scared. Things happened so fast that I didn't know which way was up. Also, being so young, it never really occurred to me that I might die. And trust me, I came VERY close more than once that time, but the thought never crossed my mind. Now, it crosses my mind a little more often. I don't like to have a pessimistic attitude and I am fully convinced everything will turn out fine, but the reality is, in this process, there are about a million opportunities for doom. Lately, I've had to force myself to not think about every single one of them on more than one occasion....

My Background

14 years ago, I was diagnosed with chronic kidney disease. I was immediately started on peritoneal dialysis and put on the kidney transplant list. I was just 18. After two years of waiting, the call finally came: a kidney was available!!! And after 6 hours in the operating room, I was the proud owner of a brand new kidney. The transplant was a huge success and things were going well until six weeks ago when I got another phone call...