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/
Sunday, September 20, 2009
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.
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.
Friday, September 18, 2009
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!!
Monday, September 14, 2009
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! :)
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! :)
Wednesday, September 9, 2009
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.
Saturday, September 5, 2009
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
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
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....
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...
Subscribe to:
Comments (Atom)
