After a very full day of testing, my yearly evaluation at the tx center is in the books. I think all went well. I don't expect any bad results from the persantine thallium stress, it seemed to go OK.
I met and talked at length with one of the surgeons - Dr. Narins, also my transplant counselor, and financial advisor (which was very helpful since I'm in a bit of an insurance tumult currently) and finally the psych lady. Ahem.....I think I passed. But I mentioned the fact that I ride a sine wave of emotions that range between extreme anxiety and desperate depression. To this, the doctor quoted the great philosopher Petty and told me that "the waiting is the hardest part". He said that when people are brought in in an ambulance and told they need some sort of surgery right away, they don't get much time to think about it whereas I am getting years to think everything through before we even get started.
The one nugget for thought that Dr. Narins gave me to mull over was the option of going forward with just a kidney transplant for now and then a pancreas transplant later when an organ is available. He said that although I've stated that I only wanted to go through the surgery, etc. once, this option may save me from being placed on dialysis or being rejected by the tx team because I refused to do dialysis. Saying again that since the pancreas is the "touchy" organ / and harder to successfully transplant, that by splitting up the procedure and doing kidney, then pancreas later, this may actually shorten my wait.
And since time isn't exactly on my side.... this is something else to ponder now.
I'm praying for direction.
Thanks for checking in here.
I do appreciate it.
Tuesday, December 13, 2011
Sunday, December 11, 2011
Testing...Testing... 1..2..3....
Alright, tomorrow I'm off for an all day service check at the transplant center.
Kinda like a yearly car inspection. I start the day at 6:45am with a persantine thallium stress test, a physical, more bloodwork, then off to the tx department for a meeting with the surgeon, a meeting with the pre-transplant coordinator, financial advisors, then the psych/soc lady.
So much fun to fit into one day.
I'll let you know how it goes.
Kinda like a yearly car inspection. I start the day at 6:45am with a persantine thallium stress test, a physical, more bloodwork, then off to the tx department for a meeting with the surgeon, a meeting with the pre-transplant coordinator, financial advisors, then the psych/soc lady.
So much fun to fit into one day.
I'll let you know how it goes.
Wednesday, November 30, 2011
In and out of in between....
I had my appt. with my nephrologist today and although some of my numbers were down from last time, the doc is not quite as worried as I thought he might be. He reassured me by saying that I have had bad numbers in the past and bounced back. He said he couldn't say just how many of these bounces I have left but for now, unless we see several of these tests come back with real low numbers, we are "ok".
On the issue of the fistula, he said that I could have it put in now but since I am dead set against dialysis he thought it a moot point. (The doctor did however take me for a walk through the dialysis center to show me all the fun that takes place there. Ugh.) But he told me that my levels, as they are now, are not bad enough to get me kicked off the transplant train.
My next big appointment is at the transplant center on December 12.
Thanks for checking in here.
On the issue of the fistula, he said that I could have it put in now but since I am dead set against dialysis he thought it a moot point. (The doctor did however take me for a walk through the dialysis center to show me all the fun that takes place there. Ugh.) But he told me that my levels, as they are now, are not bad enough to get me kicked off the transplant train.
My next big appointment is at the transplant center on December 12.
Thanks for checking in here.
Monday, November 14, 2011
Argh.
Got this month's bloodwork results back this morning. While the numbers that I can control most seem to be doing ok, my GFR has fallen to 17. This is not good. : (
I'm really not looking forward to my nephrologist appointment on the 30th.
I'm really not looking forward to my nephrologist appointment on the 30th.
Friday, November 4, 2011
Long Time Coming
Yes I know that I am waaaaay overdue in updating here. I have a myriad of excuses but none are uber valid and so I'll just get on with it.
I've posted here in the past the steps I've been taking to help the kidney situation - I take my meds religiously, stay hydrated, try to eat well, maintain my blood pressure, and do my best to keep my bloodsugars in check but end stage renal failure is a lot like trying to make a delicious snowcone last on a hot July day, no matter how you try - you know how the story ends. When my nephrologist told me more than a year ago that I was going to need a transplant he told me that he never wanted to see me on dialysis. He told me why and I concurred. It's an ugly process and Q of L really takes a dive. So that day I made up my mind that I was going forward. If I needed a transplant - so be it but I was not going to do dialysis.
I hold that mindset even today but recently several of my docs have said that the snowcone is melting fast and that I need to reconsider. I even received an after-hours call from the transplant center and my tx coordinator did her best to change my mind. I told her that I was solid in my position and didn't think it was going to change. She then took the gloves off and apologized for sounding ruthless but told me that if my GFR and other numbers continued to slide that they could, in fact, deny me a transplant (although the goal of these centers is to help people, they really have to watch their numbers / success rates etc. and they take any steps necessary to do so). She told me that as toxins build up in my body that chances for a successful tx are correspondingly diminished. She gave it her best shot and had only succeeded in as much as me telling her that I would "think about it."
Well this was all she needed. I've told you before these people are GOOD at what they do and as much as I like to feel like I am a one-of-a-kind type of guy, obviously Becca had been down this road before. After I mentioned that I would at least think about the possibility of dialysis, she proceeded to tell me that even if I was determined to absolutely need it today that it would be 2-3 weeks before it could be started. This is because to facilitate dialysis, access to your bloodstream has to be made through a device called a arteriovenous fistula. To get one of these things you have to check into the hospital for surgery to have the fistula implanted in you (usually in your arm) and then the whole deal has to heal or "mature" for several weeks before it can be used.
Long story short - if there is even an infinitesimal chance that I would agree to dialysis, Becca wants me to have the fistula in and ready to go. And so this is the issue that is currently consuming my thought process. I have another appointment with my kidney doctor on the 30th of this month. I will get the latest blood test results and see where we go from there.
Thanks for checking in here. Take good care of your kidneys! : /
I've posted here in the past the steps I've been taking to help the kidney situation - I take my meds religiously, stay hydrated, try to eat well, maintain my blood pressure, and do my best to keep my bloodsugars in check but end stage renal failure is a lot like trying to make a delicious snowcone last on a hot July day, no matter how you try - you know how the story ends. When my nephrologist told me more than a year ago that I was going to need a transplant he told me that he never wanted to see me on dialysis. He told me why and I concurred. It's an ugly process and Q of L really takes a dive. So that day I made up my mind that I was going forward. If I needed a transplant - so be it but I was not going to do dialysis.
I hold that mindset even today but recently several of my docs have said that the snowcone is melting fast and that I need to reconsider. I even received an after-hours call from the transplant center and my tx coordinator did her best to change my mind. I told her that I was solid in my position and didn't think it was going to change. She then took the gloves off and apologized for sounding ruthless but told me that if my GFR and other numbers continued to slide that they could, in fact, deny me a transplant (although the goal of these centers is to help people, they really have to watch their numbers / success rates etc. and they take any steps necessary to do so). She told me that as toxins build up in my body that chances for a successful tx are correspondingly diminished. She gave it her best shot and had only succeeded in as much as me telling her that I would "think about it."
Well this was all she needed. I've told you before these people are GOOD at what they do and as much as I like to feel like I am a one-of-a-kind type of guy, obviously Becca had been down this road before. After I mentioned that I would at least think about the possibility of dialysis, she proceeded to tell me that even if I was determined to absolutely need it today that it would be 2-3 weeks before it could be started. This is because to facilitate dialysis, access to your bloodstream has to be made through a device called a arteriovenous fistula. To get one of these things you have to check into the hospital for surgery to have the fistula implanted in you (usually in your arm) and then the whole deal has to heal or "mature" for several weeks before it can be used.
Long story short - if there is even an infinitesimal chance that I would agree to dialysis, Becca wants me to have the fistula in and ready to go. And so this is the issue that is currently consuming my thought process. I have another appointment with my kidney doctor on the 30th of this month. I will get the latest blood test results and see where we go from there.
Thanks for checking in here. Take good care of your kidneys! : /
Tuesday, September 20, 2011
Laughter is Good Medicine
A Cartoonist Laughs at Diabetes
Haidee Merritt got Type 1 diabetes at the tender age of two and says, "What began as a few doodles represents a lifetime of personal struggles and experiences. My cartoons are a way to confront and accept things that are sometimes hard, and to communicate with others."
Haidee Merritt got Type 1 diabetes at the tender age of two and says, "What began as a few doodles represents a lifetime of personal struggles and experiences. My cartoons are a way to confront and accept things that are sometimes hard, and to communicate with others."
Haidee's cartoons are an escape hatch -- a get-out-of-diabetes-jail pass.
Here follows a short interview with an author and brief review of a book that offers an intriguing proposition.
Q: You have a rather dark sense of humor. Have you always?
Haidee Merritt: Maybe not always, but I've worked hard at shaping it, so thank you. MAD magazines were floating all over my house growing up; my favorite strip was "Snappy Answers to Stupid Questions" -- just dripping with sarcasm.
In relation to my cartoons, I just reached the point with my diabetes where I honestly couldn't imagine what else could happen. After a lifetime with it, there's almost nothing you can do but sit back and watch your fate unfold. You might as well grab some popcorn and get ready for the feature presentation.
I don't say, "all hope is lost!" and mope around drinking maple syrup. I choose to laugh at the screen. It's my way of coping. It's like I'm standing there looking this thing right in the eye and saying, "Impress me, I dare ya. Bring it on."
Q: You got Type 1 diabetes when you were two. What are your most vivid memories of having diabetes as a child?
Haidee Merritt: It was a frightening and often embarrassing way to grow up. My most vivid memory is from a crisp autumn morning, coming back to consciousness, strapped between my mother's thighs as she smashed maple sugar candy down my throat. There was a crowd of spectators and I wanted to run behind a building; down an embankment to escape and hide. My mom said, "If you go down there I'm not coming after you." I just remember crying, needing her but wanting to run. There was no place to escape from it.
Q: You've had diabetes now 38 years. What have you learned in all that time?
Haidee Merritt: Hah! I just turned 40 and here I am doing a diabetes retrospective! There are no two days that are exactly the same which means there's no coasting, no shifting into automatic-pilot for a diabetic. Every day -- every minute of every hour of every day -- is a tweaking, an adjustment, a refining of the skills you have learned to keep your body functioning. In my book there's a cartoon that says " ... it's a full-time job you're not paid for." Seriously, your life can revolve around just monitoring and reacting to this disease.
I feel that diabetics, as individuals, are a collection of our own experiences. Sure, there are certain levels of understanding we all can reach, formulas and guidelines we can be taught, but our response to things, our emotional reactions to certain circumstances is singular. I've learned that the titles I grew up with -- being a "good" or "bad" diabetic -- really set people up for failure. I now believe we need to exist in the area between the two extremes [in order] to have the endurance and resilience to cope long-term.
Q: You say the cartoons in your book are the expression of personal struggles and experiences, and that drawing them helps you confront and accept things. Tell me more about that.
Haidee Merritt: It's about expressing and owning my diabetic voice. I want people who are reading about the book not to assume this author/illustrator simply pities her life and wants to spread gloom and doom. Admittedly, there's bitterness below the surface -- and okay, above the surface ever-so-slightly -- but that's fair.
It's important to own the experiences we each have -- calling those experiences horrific or depressing or tragic, or beautiful, gratifying, redeeming. It isn't healthy in my opinion to minimize trauma or personal emotions. What each of us is going through is our own reality. It's empowering to embrace the crap flicked your way. It makes you stronger to claim it [and] conquer it.
Q: What made you create the book -- particularly since you self-published it?
Haidee Merritt: It's a way to share my diabetic heritage in a way I enjoy, through telling a story in pictures -- the oldest form of social media. This book is a glimpse of insight from a person who has never known life without diabetes. Frankly, I think it should be required reading and that diabetes institutions from far and near should embrace it.
Q: Which is your favorite cartoon and why?
Haidee Merritt: "Simple Pleasures" is my favorite. The expression on the guy's face makes me smile. I feel as though I successfully captured the feeling with that one.
Also, I say that phrase -- ah, the simple pleasures -- to myself rather often. For example: having a meter in each of the bathrooms of my house; flipping the cap off a new bottle of insulin ("It's Miller Time"); the security of having more than one box of test strips in the fridge; the week between injections of Vitamin B -- oh, the pure joy of it; the moment after I place a new insulin pod on my body and I know there are three days I don't have to think about it; getting your special meal delivery first on the plane. I could go on and on you know.
Q: Which is your second favorite cartoon and why?
Haidee Merritt: "Whoopie Pies" is a favorite because it's clean in message and ink. I think it's effective in how it's happy and fun -- the very name of the thing, the very shape of it -- while at the same time we're denied the happiness and fun.
Q: What feedback have you gotten from readers?
Haidee Merritt: I have to say, gratefully, that it's all been positive. I think it's refreshing just to say that things bother you, or you struggle with your disease or that other people do too. Owning and embracing these struggles is courageous and what could be more optimistic than courage in the face of fear and uncertainty? I think critics need to have a different perspective.
Q: You say, "Diabetes isn't a disease it's a lifestyle." What do you mean?
Haidee Merritt: To me a disease involves a diagnosis, precise treatment and a cure. The reason I call diabetes a lifestyle is because it's unpredictable and erratic. There are countless variables that affect a diabetic and [diabetes] doesn't go away. You wake up with it, you live with it; you go to bed with it and do it all over the next day. That's a lifestyle.
Q: What don't people "get" about diabetes?
Haidee Merritt: That it constantly screws with your head. It makes you doubt yourself, question yourself, redefine and reexamine yourself at every turn. It's not a static condition. It morphs and makes your body continually change. It's an emotional disease as well as a physical one. It's a social disease as well as an intensely private one. It's a struggle. It's not a disease you can beat in my opinion; it's a disease you have to join. I hate not having the option.
Q: You say, "You can't throw a rock anymore without hitting a diabetic." Are you jealous?
Haidee Merritt: Funny, but there is some sort of possessiveness. Hmmm... not jealousy, but it's definitely more personal now that the disease is so rampant. I feel I wear some kind of label, where maybe I have more market value as a diabetic than personal value. Let's just say everyone either knows or is related to someone with diabetes these days.
Book Review: "One Lump Or Two? Things that suck about being diabetic" by artist/writer/wise-cracker Haidee Merritt is for anyone with diabetes who needs a time out. I'm not talking about the time outs that parents give misbehaving children. I'm not talking about sticking you in the corner and making you reflect on your sins. I am talking about the type of time out everyone with diabetes craves and needs -- time to get away from tending to your diabetes, laugh and feel validated by a cartoon that expresses the enormity of this sometimes exhausting, overwhelming condition. As the author says on her closing page, "I'm sure your diabetes sucks too. Save your energy for those who understand."
What I like most: As Groucho Marx said, "I wouldn't belong to any club that would have me." While I'd prefer not to belong to this one, I get to enjoy that I "get" every cartoon and it "gets" me and my life with diabetes. Haidee's voice is cynical, sharp, smart and relatable from a woman who's not pussy-footing around.
Strengths of this book: You can read it all in less than a half hour or savor one cartoon a day to save your sanity.
Haidee's work can be found on DiabetesMine as the resident Sunday funnies creator.
Here follows a short interview with an author and brief review of a book that offers an intriguing proposition.
Q: You have a rather dark sense of humor. Have you always?
Haidee Merritt: Maybe not always, but I've worked hard at shaping it, so thank you. MAD magazines were floating all over my house growing up; my favorite strip was "Snappy Answers to Stupid Questions" -- just dripping with sarcasm.
In relation to my cartoons, I just reached the point with my diabetes where I honestly couldn't imagine what else could happen. After a lifetime with it, there's almost nothing you can do but sit back and watch your fate unfold. You might as well grab some popcorn and get ready for the feature presentation.
I don't say, "all hope is lost!" and mope around drinking maple syrup. I choose to laugh at the screen. It's my way of coping. It's like I'm standing there looking this thing right in the eye and saying, "Impress me, I dare ya. Bring it on."
Q: You got Type 1 diabetes when you were two. What are your most vivid memories of having diabetes as a child?
Haidee Merritt: It was a frightening and often embarrassing way to grow up. My most vivid memory is from a crisp autumn morning, coming back to consciousness, strapped between my mother's thighs as she smashed maple sugar candy down my throat. There was a crowd of spectators and I wanted to run behind a building; down an embankment to escape and hide. My mom said, "If you go down there I'm not coming after you." I just remember crying, needing her but wanting to run. There was no place to escape from it.
Q: You've had diabetes now 38 years. What have you learned in all that time?
Haidee Merritt: Hah! I just turned 40 and here I am doing a diabetes retrospective! There are no two days that are exactly the same which means there's no coasting, no shifting into automatic-pilot for a diabetic. Every day -- every minute of every hour of every day -- is a tweaking, an adjustment, a refining of the skills you have learned to keep your body functioning. In my book there's a cartoon that says " ... it's a full-time job you're not paid for." Seriously, your life can revolve around just monitoring and reacting to this disease.
I feel that diabetics, as individuals, are a collection of our own experiences. Sure, there are certain levels of understanding we all can reach, formulas and guidelines we can be taught, but our response to things, our emotional reactions to certain circumstances is singular. I've learned that the titles I grew up with -- being a "good" or "bad" diabetic -- really set people up for failure. I now believe we need to exist in the area between the two extremes [in order] to have the endurance and resilience to cope long-term.
Q: You say the cartoons in your book are the expression of personal struggles and experiences, and that drawing them helps you confront and accept things. Tell me more about that.
Haidee Merritt: It's about expressing and owning my diabetic voice. I want people who are reading about the book not to assume this author/illustrator simply pities her life and wants to spread gloom and doom. Admittedly, there's bitterness below the surface -- and okay, above the surface ever-so-slightly -- but that's fair.
It's important to own the experiences we each have -- calling those experiences horrific or depressing or tragic, or beautiful, gratifying, redeeming. It isn't healthy in my opinion to minimize trauma or personal emotions. What each of us is going through is our own reality. It's empowering to embrace the crap flicked your way. It makes you stronger to claim it [and] conquer it.
Q: What made you create the book -- particularly since you self-published it?
Haidee Merritt: It's a way to share my diabetic heritage in a way I enjoy, through telling a story in pictures -- the oldest form of social media. This book is a glimpse of insight from a person who has never known life without diabetes. Frankly, I think it should be required reading and that diabetes institutions from far and near should embrace it.
Q: Which is your favorite cartoon and why?
Haidee Merritt: "Simple Pleasures" is my favorite. The expression on the guy's face makes me smile. I feel as though I successfully captured the feeling with that one.
Q: Which is your second favorite cartoon and why?
Haidee Merritt: "Whoopie Pies" is a favorite because it's clean in message and ink. I think it's effective in how it's happy and fun -- the very name of the thing, the very shape of it -- while at the same time we're denied the happiness and fun.
Haidee Merritt: I have to say, gratefully, that it's all been positive. I think it's refreshing just to say that things bother you, or you struggle with your disease or that other people do too. Owning and embracing these struggles is courageous and what could be more optimistic than courage in the face of fear and uncertainty? I think critics need to have a different perspective.
Q: You say, "Diabetes isn't a disease it's a lifestyle." What do you mean?
Haidee Merritt: To me a disease involves a diagnosis, precise treatment and a cure. The reason I call diabetes a lifestyle is because it's unpredictable and erratic. There are countless variables that affect a diabetic and [diabetes] doesn't go away. You wake up with it, you live with it; you go to bed with it and do it all over the next day. That's a lifestyle.
Q: What don't people "get" about diabetes?
Haidee Merritt: That it constantly screws with your head. It makes you doubt yourself, question yourself, redefine and reexamine yourself at every turn. It's not a static condition. It morphs and makes your body continually change. It's an emotional disease as well as a physical one. It's a social disease as well as an intensely private one. It's a struggle. It's not a disease you can beat in my opinion; it's a disease you have to join. I hate not having the option.
Q: You say, "You can't throw a rock anymore without hitting a diabetic." Are you jealous?
Haidee Merritt: Funny, but there is some sort of possessiveness. Hmmm... not jealousy, but it's definitely more personal now that the disease is so rampant. I feel I wear some kind of label, where maybe I have more market value as a diabetic than personal value. Let's just say everyone either knows or is related to someone with diabetes these days.
Book Review: "One Lump Or Two? Things that suck about being diabetic" by artist/writer/wise-cracker Haidee Merritt is for anyone with diabetes who needs a time out. I'm not talking about the time outs that parents give misbehaving children. I'm not talking about sticking you in the corner and making you reflect on your sins. I am talking about the type of time out everyone with diabetes craves and needs -- time to get away from tending to your diabetes, laugh and feel validated by a cartoon that expresses the enormity of this sometimes exhausting, overwhelming condition. As the author says on her closing page, "I'm sure your diabetes sucks too. Save your energy for those who understand."
What I like most: As Groucho Marx said, "I wouldn't belong to any club that would have me." While I'd prefer not to belong to this one, I get to enjoy that I "get" every cartoon and it "gets" me and my life with diabetes. Haidee's voice is cynical, sharp, smart and relatable from a woman who's not pussy-footing around.
Strengths of this book: You can read it all in less than a half hour or savor one cartoon a day to save your sanity.
Haidee's work can be found on DiabetesMine as the resident Sunday funnies creator.
Friday, August 26, 2011
The latest, maybe not the greatest...
Just saw the nephrologist and got my latest test results back and they are a bit dissapointing this time.
Fructoseamine was just good this time and bp was good, but my creatinine levels are high, my iron is low, and my GFR has fallen to 18. (That's not so good). On the bright side, I've lost 12 pounds, but I'm not even sure that is healthy in the given situation. Better times ahead.
Fructoseamine was just good this time and bp was good, but my creatinine levels are high, my iron is low, and my GFR has fallen to 18. (That's not so good). On the bright side, I've lost 12 pounds, but I'm not even sure that is healthy in the given situation. Better times ahead.
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