Finally! It has been 7 months since I found out my kidney is failing, 5 months since my first visit with Dr. Cool Whip and 4 months since I started my pre-transplant evaluation and I am FINISHED!!! There were several times during this process when I thought this day would never arrive and it took every ounce of strength and patience I had to keep chugging along, but the day has come at last. I completed the last of my tests this past Monday, an ultrasound of my legs with no sign of Grumpy McNo-Fun (!), and gave Sandra, the transplant coordinator a call on Thursday. To my surprise, she said that she would be able to present my case to the transplant team this coming week. They will meet this Thursday to decide if I am an ideal candidate for transplantation and yes, I am a nervous wreck. While no one seems to think there would be any reason for them to deny me, it is virtually impossible to predict the outcome. There are three possible scenarios...they can approve me, deny me, or deny me for now. My main concern is my creatinine clearance, which is right on the cusp. In order to list, they like you to be 20 or below. When we last checked mine, it was 24 and Dr. Cool Whip most recently estimated it at a little under 21, so it could really go either way. Obviously, I wouldn't be devastated if they decide to wait for that number to go down to list me, but it really isn't the answer I am looking for. Ideally, I would like to list now while I'm still feeling relatively good than to wait until I'm knocking on the door of Mr. Dialysis. Plus, as soon as I am listed, those who are interested in donating a kidney can begin getting their evaluations, thereby increasing my chances of skipping dialysis altogether. I realize this is the best case scenario, and the chances of this happening are slim...but a girl can dream.
But, it is out of my hands now. I've done all I can do, and it's up to the transplant team to decide. Luckily, my vacation to Florida is this week, so I will be entirely too busy planning, packing, and relaxing to worry and over analyze. I have good friends to visit, sunshine to enjoy, dolphins to swim with and rides to ride. And hopefully, I'll be bringing back a bit of good news!
Sunday, January 17, 2010
My Deja Vu
It is difficult for me to remember a holiday season in my life when I have felt 100% healthy. Maybe it was the anticipation of a living room full of presents, but when I was a kid, I was sick every Christmas day without fail. Flash forward to Christmas 1995. I was deathly ill, sleeping up to 20 hours per day, throwing up anything and everything I ate and being treated for a "stomach ulcer." Three days later, I was diagnosed with end stage kidney disease and had begun preparing for a lifetime of coping with a chronic illness. Two more years go by and the dialysis wasn't working as well as it once had. Pictures from that Christmas show one very tired, pale and puffy young Dawn. Two days later came the call I had been longing for: a kidney was available with my name on it. Less than 12 hours later, I had a brand spanking new functioning kidney.
It should have come as no surprise, then, when I awoke this past Christmas morning feeling like a pile of poop. My stomach was in knots, I had absolutely no appetite and barely enough energy to haul my butt out of bed. This time I was convinced the culprit was medicine related and did not signal impending doom. The week before, I had received a call from my new BFF, Denise, who told me that while my hemoglobin came up to a whopping 8.6, my iron had dropped nearly in half. Not good. As a result, Dr. Cool Whip had prescribed an iron supplement to attempt to bring it up some. Iron is notoriously difficult to take, so when I started feeling horrible, I was quick to speak up and request to stop the medicine. After a week of being iron-free, however, I wasn't feeling any better and panic started setting in. I was worried that the kidney had bit the big one, so I had Dr. Cool Whip run some tests. The good news was it wasn't the kidney. It looks as though it is holding strong and my levels have been stable since June. The bad new was, we still weren't sure what was causing me to feel sick. We finally settled on a virus of some sort and went with the old "wait and see" course of action. It seems like we were right because for the past week, I have been feeling a little better each day.
Unfortunately, though, I am still not taking the iron, and without iron, the Epogen injections will not work as well. Not that the Epogen had been doing much to begin with. In the four months I have been taking it, the most it has done has been keeping my hemoglobin steady which would be awesome if my hemoglobin had started out at say, 12.6 rather than 8.6. So, I am finally getting a higher dose of Epogen. In fact, they are more than doubling it...from 40 mcgs to 100! I will eventually have to start back up with the iron, as well, but probably at a lower dose. For now, we're just going to see how the new dose of Epogen works out. My first shot with the new dosage will be this week, and I couldn't be more excited!!
It should have come as no surprise, then, when I awoke this past Christmas morning feeling like a pile of poop. My stomach was in knots, I had absolutely no appetite and barely enough energy to haul my butt out of bed. This time I was convinced the culprit was medicine related and did not signal impending doom. The week before, I had received a call from my new BFF, Denise, who told me that while my hemoglobin came up to a whopping 8.6, my iron had dropped nearly in half. Not good. As a result, Dr. Cool Whip had prescribed an iron supplement to attempt to bring it up some. Iron is notoriously difficult to take, so when I started feeling horrible, I was quick to speak up and request to stop the medicine. After a week of being iron-free, however, I wasn't feeling any better and panic started setting in. I was worried that the kidney had bit the big one, so I had Dr. Cool Whip run some tests. The good news was it wasn't the kidney. It looks as though it is holding strong and my levels have been stable since June. The bad new was, we still weren't sure what was causing me to feel sick. We finally settled on a virus of some sort and went with the old "wait and see" course of action. It seems like we were right because for the past week, I have been feeling a little better each day.
Unfortunately, though, I am still not taking the iron, and without iron, the Epogen injections will not work as well. Not that the Epogen had been doing much to begin with. In the four months I have been taking it, the most it has done has been keeping my hemoglobin steady which would be awesome if my hemoglobin had started out at say, 12.6 rather than 8.6. So, I am finally getting a higher dose of Epogen. In fact, they are more than doubling it...from 40 mcgs to 100! I will eventually have to start back up with the iron, as well, but probably at a lower dose. For now, we're just going to see how the new dose of Epogen works out. My first shot with the new dosage will be this week, and I couldn't be more excited!!
Sunday, November 22, 2009
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!
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!
Sunday, November 15, 2009
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
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!
Sunday, November 8, 2009
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...
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...
Tuesday, October 27, 2009
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.!
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