Life comes from within your heart and desire...

Ok this past year I've used this blog to keep folks up to date on my health which can be kinda depressing . In retrospect a lot of the posts seem to have a bit of a melancholy air to them and that isn't me. It's not suppose to be like this. It's been a tough year, but you gotta keep on keeping on.
With everything else that's been going on in my life I haven't got any Christmas cards sent out this year but in lieu of those cards, please check out the following link.
When the music begins, take your cursor across the image and reflect a moment on the message therein.

I wish all of you a most wonderful holiday season!
May 2012 be good to all of us.

                                                  May the very best of holidays be yours!

Unthought Known

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.

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.

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.

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.

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!  : /

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'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.

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.

SKP and All That Jazz

OK, I've been told that it's been more than a month since my last post.....but I haven't really got any news. I've had some bad dealings with the hypoglycemia lately, but no news from the tx center.  And so I'm just going to post the following Public Service Announcement in an effort to answer more of the questions that I am asked all the time.

Thanks for checking in here!

What is a simultaneous kidney-pancreas transplant (SKP)?

A kidney-pancreas transplant is an operation to place both a kidney and a pancreas – at the same time – into someone who has kidney failure related to type 1 diabetes.
In many cases, both transplanted organs may come from the one deceased donor. However, it is also possible for the kidney to come from a living donor (a family member or friend) and the pancreas from a deceased donor.
This type of transplant treats both kidney failure and diabetes because the new organs replace the function of the failed kidney and the pancreas. The first successful kidney-pancreas transplant in the U.S.A. took place in 1966.
Since then, more of these operations are occurring each year. In 2008, more than 800 were done at transplant centers in the United States

Who is a candidate for SKP?

Adults whose kidneys have failed because of type 1 diabetes are possible candidates for a kidney-pancreas transplant. In type 1 diabetes, the pancreas does not make enough insulin, a hormone that regulates the blood sugar level in your body. The transplanted pancreas can produce insulin and correct this type of diabetes. People with type 2 diabetes are not candidates for a combined kidney-pancreas transplant. In type 2 diabetes, the pancreas makes insulin, but the patient’s body tissues are not able to use this insulin properly. For this reason, a pancreas transplant would not help to correct type 2 diabetes. However, people with this type of diabetes can still have a kidney transplant if they develop kidney failure because of their diabetes.

Medical Criteria for SKP

Usually, a patient with insulin dependent diabetes (Type 1, juvenile diabetes) whose kidneys have failed (“end stage renal disease” (ESRD)) and who requires dialysis, or a patient whose e-GFR is near 20/mL/min or less. The transplant center where you have your evaluation will provide more information about candidate requirements.

Which patients may not be considered for SKP transplantation?

A kidney-pancreas transplant is usually NOT an option in a person with:

• HIV infection
• Active Cancer
• Poor adherence to treatment
• Substance abuse problems
• Severe mental retardation
• Severe coronary artery disease and/or congestive heart failure.

Is it possible to have kidney and pancreas transplants at different times?

Yes. Sometimes, a patient who has kidney failure because of type 1 diabetes may have a kidney transplant first, followed by a pancreas transplant at a later date.

How long is the wait?

The waiting time for a kidney-pancreas transplant varies, depending on your blood group and how long it takes for a suitable deceased donor to become available. According to the United Network for Organ Sharing (UNOS), the average wait for a pancreas is 300 to 400 days, while the wait for a combined kidney and pancreas is about 300 days. As of July 2009, there are more than 2,200 candidates listed on the national waiting list awaiting a kidney-pancreas transplant.

How successful are kidney-pancreas transplants?

Patient survival after SKP transplantation is more than 90 percent at two years. The national average for survival rates of kidney pancreas transplants is 94.1 percent still functioning well one year after the operation, and 87.1 percent at three years.
The best results are usually achieved with a closely matched kidney from a living donor (usually from a sibling). Statistics show that the next best results are achieved with a kidney from a less closely matched living donor (such as a spouse or friend). The success rates are also good for combined kidney-pancreas transplants from deceased donors. The best results are usually achieved when both the pancreas and a kidney come from the same donor: a deceased donor. This is because the risk of rejection is significantly reduced. However, there have been several transplants performed using a living donor, with one kidney and a pancreas segment being donated.

How are folks evaluated for a kidney-pancreas transplant?

In general, patients with type 1 diabetes and kidney failure are considered for kidney-pancreas transplants only if they do not have other serious problems related to diabetes, such as heart disease or severe blood vessel disease.
You will meet with many transplant team members including a transplant surgeon, a kidney specialist, a transplant coordinator and a social worker at the transplant center. In addition to a medical history review and physical examination, you may receive:

• Blood tests, including blood and tissue typing
• Tests to evaluate your diabetes. This will confirm that you have Type 1 diabetes
• Evaluation of your kidneys, including a 24-hour urine test if you are not on dialysis
• Tests of your heart and lung function
• Social and psychological evaluation
• Neurological tests to evaluate loss of sensation in hands and feet
• Eye and dental exam. Being legally blind was in the past an exclusion criteria. The transplant center will provide more information about this condition affecting your candidacy.

If all the tests go well, you will be accepted for a kidney-pancreas transplant and placed on the transplant center’s waiting list. You will also be registered on the national computerized registry, which is maintained by UNOS.

What does the operation involve?

In the kidney-pancreas transplant operation, the pancreas is placed on the right side of your lower abdomen, and the pancreatic vessels are attached to the right iliac artery and vein. The iliac vein and artery are major blood vessels in your lower abdomen. The pancreas is also attached to the intestines or bladder to drain its secretions. Then, the kidney is placed in the left side of the lower abdomen. The kidney blood vessels are attached to the left iliac vessels and the ureter is attached to the bladder. Usually, your own kidneys and pancreas are not removed.
The surgical procedure usually lasts four to six hours, and your hospital stay is typically two to four weeks. After the surgery, the pancreas begins to make insulin within hours, and the blood sugar is normalized. From this point on, insulin shots are usually not required unless the body rejects the new pancreas. Studies show that good function of the new pancreas may help slow the progression of other problems related to diabetes, such as nerve and eye damage, and decrease the chance that diabetic changes may occur in the transplanted kidney.

What can one expect after the operation?

The post-operative care of the kidney/pancreas recipient is very similar to the recipient of a kidney alone. While the recipient of a kidney transplant is not usually monitored in the intensive care unit, the recipient of a kidney/pancreas may spend a day or so there for careful monitoring of both kidney and pancreas functioning. If there are no complications such as rejection or infection, you should be able to go home in seven to ten days. Remember that you will need to take special medicines, called immunosuppressive or anti-rejection medications, following your transplant surgery to help prevent your body from rejecting your newly transplanted organs. It is necessary to take these medications exactly as the doctor prescribes for the rest of your life. In addition, you will have regularly scheduled tests as an outpatient to monitor the function of your transplanted organs and will be encouraged to maintain a healthy lifestyle through diet and exercise.

What complications may occur?

The main complications that may occur are infection and rejection. In order to prevent rejection, it is important to take your medications exactly as ordered by your doctor. The symptoms of rejection you need to watch for may include tenderness around the transplanted organs, decreased urine output, increase in blood glucose level, fever, abdominal pain and vomiting.
If you have any of these symptoms, speak to your transplant team right away. You will be evaluated regularly at the transplant center. Sometimes, early symptoms of rejection are hard to notice, but they can be detected in your blood work and treated. Most kidney-pancreas transplant patients will have a rejection episode during the first few months, and they will need to return to the hospital for treatment.
The medications you need to take to prevent rejection lower your body’s immune defenses, which increases your chance of getting an infection. This risk is higher right after your transplant because the doses of your medications are higher. During this time, it is important to avoid large crowds and people who are sick, especially with contagious illnesses such as colds or flu. You should wash your hands often. After a while, the doses of your medications will be reduced, and the chance of getting infections will be less.

Do the anti-rejection medications have side effects?

Yes. These medications have many potential side effects. All of them can increase your chances of getting infections (see previous question). Other side effects depend on the specific medications you are taking. It is important to learn the side effects that each of your medications may cause and understand what to do if you have any of them. Some side effects are more serious and require an immediate call to your transplant team and quick adjustments in your medications. Other side effects may be more of a bother, but not life-threatening, and they can be dealt with at your next clinic visit. Ask your transplant team what to do to help minimize side effects.

How can I cope with fears about rejection and other concerns?

Although transplantation gives most recipients a new lease on life, with added freedom and increased energy and productivity, it is normal to experience some stress. For example, it is not unusual to have fears about rejection, concerns about returning to work and other activities, and feelings of isolation. Here are some strategies that may help you to better cope with these and other challenges:

• Join a local support group for transplant recipients
• Learn as much as possible about and be involved in your medical care and progress
• Find personal quiet time to think about your feelings, identify concerns and plan for the adjustments you need to make
• Get to know the members of your transplant team, and discuss the issues that most concern you.

Can I return to work and other activities after the transplant?

It may be possible to return to your previous employment, start a new job or work part-time. However, if this is not possible, there are many other types of fulfilling and productive activities you can explore. These may include continuing your education, pursuing hobbies, volunteering, starting an exercise program, traveling or spending quality time with family and friends. If returning to work is an option for you, you may want to ask the transplant social worker at your center for information about the rehabilitation services provided through your state’s Department of Vocational Rehabilitation.

Other sources of help and information

You can also check the following resources for additional general information:
National Kidney Foundation1-800-622-9010
United Network for Organ Sharing 1-888-894-6361 http://www.unos.org/
National Transplant Assistance Fund1-800-642-8399 www.transplantfund.org/
State Kidney Programs1-800-733-7345
American Kidney Fund1-800-638-8299 www.kidneyfund.org

No news...

This has been a quiet week so far. Most recent bloodwork shows improvements in some areas and down turns in others. Middle of the road is better than the ditch. ; )

Numbers and other matters.......

It's a new day and I received a call from Pinnacle very early this morning to tell me that the donor pancreas, removed last night, was determined to be "fatty" and would not be transplanted into me or anyone else. The doctors at Pinnacle are very tough with their criteria of what they will accept and for these strict limitations I am grateful as it should greatly lessen the problems a recipient may encounter later.

I also received some info that will answer many of the questions that I've had and many of you have had recently, that is; "How could I possibly be getting transplant offers when I've only been on the list for six months?" I was told this morning that I went from tenth to second in line because of the aforementioned strict limitations that temporarily take a possible recipient out of the mix. Things as simple as a cold, an open wound, a low grade fever, dental problems, discrepencies in bloodwork, or a number of other things automatically put a recipient on hold until these issues are resolved. And so I am currently second in line at Pinnacle for a kp transplant but since others have accumulated more waiting time / points, if or when they become healthier, I will slide back toward ten. Like I've said before, there's a lot to this transplant business.

You can be sure that I'm taking this reprieve time to tend to the matters that had me in such a tizzy yesterday. Thank you all for your offers of help with everything...and I still may take you up on it!  ; )

Enjoy this day!

Fear is a friend that we misunderstand....

Ok so here's the deal so far... The donor is a young person who is brain dead but not physically gone. The tx doctors now plan to take this person into the operating room tonight at 9 pm or after to recover the organs as they have doctors coming in from all over the place to each get specific choice organs (young organs are highly prized by transplant surgeons because, in their youth, these organs work so well and are so full of life that they transplant really well). This donors lungs, for example, are going to be taken by a doctor flying in from Pittsburgh for transplant in a patient out in that end of the state. And so now I am allowed to have a light dinner but nothing after 9 pm. The center promised to call me either way but cautioned that I may not hear from them before 7 am tomorrow.

So as far as it goes for me - I'm just in a holding pattern. A little jittery but holding. If you've got an extra prayer to send up this evening please offer it for the very caring, very loving, unselfish family who at this very hour are dealing with the loss of their loved one.
May God comfort them in their sorrow and graciously reward them for their generous gifts of life to so many people.

Walking the wire......

11:45am - The tx center just called to say that the donor was in the operating room and they were recovering the organs and that they are currently screening the primary candidate. That I am still on deck but I am allowed to eat lunch.

9:45 am I just got off the phone w the tx center - their doing cross matching. I am backup. So if the primary can't for any reason. It's all me. They want me to be cautiously optimistic.

One more time around might do it.......

It's just after 4:30 am on Thursday June 9th. Last night was very warm here with a low of 76 degrees. I had just fallen into a fitfull sleep about 2:30. At 4:30  I was awakened by another phone call from Pinnacle. This one has a sense of urgency about it. I was told that I am on standby again, but this time I wasn't told to 'just go about my day until I hear anything". This morning I was told to "have breakfast and then nothing else" and that they would be calling me back as soon as the matching was completed. Now, for all of you who are now thinking "Yeah! Alright!! Goodluck man!!!" and had these same thoughts last week when I was called, let me tell you first, how much I appreciate the good wishes,
Second, let me tell you that right now, as I type this, I am pretty damn petrified.

Last week was like a slap in the face to me where all of this suddenly became very real. I mean, I know it's real when each day I feel a little bit worse than the day before, but since last Friday night there has been this real sense of needing to get things done. Now again, I am under that gun with so much yet to do. Things like scheduling my bills to be paid..., writing down all the passwords to my bill paying accounts...having my house taken care of,work,gettinginvoicesout,gettingmycarinspected,work,getting graduationgiftstakencareof,shoot'sihavescheduled,planningforpeoplecomingtovisit,havingmygardentendedto,makingplansformyclasses,work,takingcareofinsurance...and making a myriad of other plans.

I sit here as the night fades into dawn wondering what / how much I can get done in the next few hours. And yet I sit here with my stomach feeling like I'm about to get on the scariest rollercoaster that I've ever been on and my mind is firing off on a million disconnected thoughts in every direction. - Paralysis by analysis.

So, I've got a bad case of nauseous butterflies, the worst case of heartburn I've had in years, and scatterbrain to the tenth power all at the same time and it's not even dawn yet.

And so easy going, cavalier Bob, with his laid back, take things as they come , Gestalt attitude, is pretty damn scared right now.

ANY prayers, thoughts, good vibes or karma that you can send my way will be appreciated more than you can possibly know.     Thanks.

I'll keep you posted...

Not this time.....

Alright so....fifteen hours later I just heard back from the transplant center and although I would have been a match, the pancreas from the donor was not a viable organ. So I'm not getting it nor is anybody else. So THAT was a bit of a roller coaster day. But hey, I was told this kinda thing would happen and I guess it's good to have a dry run just to get used to things. Thanks for all the calls, texts, prayers and other good vibes. I am really fortunate to have such friends.

Whoa! It's 2:30am June 4th, which happens to be my parent's wedding anniversary and I just got 'The Call' from Pinnacle telling me that I am a 'back-up candidate' for available pancreas / kidney organs. Right now they are running blood / tissue matches and I am in a holding pattern but this could be it! I'll post more news when it's available. If you've got an extra prayer...

Sometimes you're just not OK....

My latest bloodwork has showed that my Potassium, which was waaaaaaay out of bounds has come back to the highest level of normal and is holding there, so this is a big relief. You never know just how much a simple thing like potassium levels can really mess with your body. I went through a episode of what was diagnosed to be "Potassium Paralysis" where I woke up one morning with full body, stroke-like symptoms and couldn't move, couldn't talk,....nothing. Thankfully these symptoms went away when my potassium was adjusted a bit and I will be happy if I never have to go through that again.
So my potassium is a bit better now, my creatinine is relatively steady, but my GFR has fallen to 21 which is kind of  drag because they want you to start dialysis when it hits 15. I remain grateful for days that I feel good and try not to gripe too much on the days that I don't. I'm also grateful for all of you that check here to see how I'm doing. I appreciate each of you. Thanks.

OOOOH K

You know.....it's always something.....this week I had my regularly scheduled bloodwork drawn. Later that evening I was out with a friend and I got a call from my doctor's office to see "if I was OK" when I asked why, I was told that the tests had shown I had an extremely dangerous level of potassium (K) in my blood. A condition called hyperkalemia. This potassium build up is caused, in earnest, by failing kidneys, but in my case it was also exacerbated by a drug I've been taking to control blood pressure (this may all be relative to some of those down days I spoke of in the last post). So now instead of using that particular drug, I'm on a new one now 3x daily. And so we'll see.....more bloodwork in the coming week will confirm whether or not we've addressed the problem .

Just checking in...

Ok,....so as of late I have been taking some heat for not updating this blog more frequently but, if you will recall, I said back in the very first post that there would not be something new each day. I have been towing the line, getting bloodwork done, trying to stay hydrated, trying to eat well, and with much effort trying my best to avoid the hypoglycemic episodes. (which is always a 24-7 battle for me). As for the general feeling of end stage kidney disease, I am really a first-time caller. I'm not sure what to expect. I do know that there are some days when it ("it" meaning everything here) is a struggle. Other days I can stride through the day as well as anyone.

Throughout all types of days, the credo that I try to have for now is:

"How I choose to feel, is how I am".

I have more big doctor appts. coming up this month and so I will have something more to post soon.
I would, however, like to take this chance to thank you guys for checking in here. I am humbled that in the four months since I launched this site there have been almost 2000 views. That really means something to me so...thanks.
More to come soon.

The Waiting...continued...

Let's take a step back and explain the mathematics of how this transplant list works. Kidneys are offered on a point-based system. Potential recipients are assigned points based on several criteria:

• Time on the transplant list. You receive one point for each full year that you have been on the list and a fraction of a point (1/365) for each day that you have been on the list.
• Genetic match with the potential donor. The closer you match the donor, the more points you get.

When a organs are available for transplant they are offered to patients on a local, regional, and then a national level. This is done to shorten the time that the organs are out of the body. This period is called cold ischemic time, and the shorter the "cold time" before transplant, the better the organs generally work. To shorten this "cold time," the country has been divided into regions, or organ procurement organizations (OPOs). When organs are available within an OPO, it is offered to the patients in that OPO first. The OPO for my region is called "Gift of Life" and it encompasses the eastern half of Pennsylvania, Delaware, and part of southern New Jersey. When organs become available, all medical information is entered into the database, the computer system runs the list, and several potentially eligible recipients are notified. If you are first on the list, the hospital will tell you to come in, "backup" recipients are also notified and put on standby. If the primary recipient cannot be transplanted for medical reasons, or because they are incompatible with the donor, the backup recipients all move up a notch.

So there you go.....this transplant business is complicated stuff. But all things considered, the folks that are running this show have it down to a real science. 
I am thankful for their expertise and dedication.

The $64,000 Question -

 

So, since this whole thing has begun, the question that I've been asked over and over again is "How long is the wait?" This can be a very frustrating and anxiety ridden stage of the transplant process, especially for people who are very sick. I am one of the lucky ones (yeah ...me...lucky....right?), I have surrounded myself with doctors and healthcare professionals that, through my research and investigation, I believe are some of the best. These people have been evaluating me for some time now and in seeing the type of activities I enjoy, and the sort of life I live, have taken a bit of a proactive stance on the need for a transplant. Rather than the reactive approach of waiting until I am real sick, need dialysis, etc. So the waiting time for me right now, while still rife with anxiety and a lot of sleepless nights, is nowhere near as bad as it is for someone who is currently extremely ill and on dialysis 3 times a week.

My Transplant Coordinator at Pinnacle, Rebecca Brown, B.S.N., R.N., C.C.T.C. wrote a great article in the latest newsletter from the transplant center explaining the wait process which I will share here over several posts. (I am still apologizing for the epic, chapter length of the last post but I had to get that off my chest.)

So, how does the transplant list work? The United Network for Organ Sharing (UNOS), is responsible for the sharing of organs nationwide. They have established criteria for placement on the transplant list. When a patient has completed transplant evaluation and has been approved for transplant, their medical information is entered into the UNOS database. This medical information includes the recipient's blood type, HLA (genetic markers), the date they started dialysis or other laboratory data. Per UNOS regulations, you cannot accumulate any waiting time until your GFR (glomerular filtration rate / kidney function) is 20 ml/min or less.

As mentioned in a previous post, with the help of some new meds, dietary changes, and staying hydrated, my latest GFR had rebounded to 22 ml/min but at one point had been as low as 16 ml/min. So, because I have been below 20 at one time, I am currently accruing wait time credits.

That's enough for today but tune in to the next post to see more on The Waiting.

And now a word about...

Hypoglycemia Unawareness

Anyone who has known me for any amount of time knows that after 35 years of this diabetic thing, hypoglycemic unawareness remains one of my biggest problems. The flippin' irony here is that the major instigator of this problem is tight control over your blood sugars and keeping sugars low (the primary goal of the most prudent diabetics) to avoid damaging other essential body parts like the heart, the eyes, the KIDNEYS, etc.

In fact, one of the most distressing problems in diabetes is hypoglycemia unawareness. Normally, a person will feel warning symptoms when their blood sugar goes low, such as shaking and sweating caused by release of stress hormones. However, those with hypoglycemia unawareness have reduced warning signals and do not recognize they are low. Even if they happen to do a blood sugar test they may not realize what they need to do to treat the low. (I test my blood sugars 6-8 times a day and yet this can sneak up at the most unexpected times). It can be soooo sneaky that  a person suffering from HU can be sitting in a chair holding a candybar and not have wherewithal to put it in their mouth. Sometimes, stress hormone release is adequate enough to eventually raise the glucose level, although this may take several hours to work.

That hypoglycemia unawareness could occur during sleep is not surprising since people wake up for less than half of the lows that occur at night, but it happens with equal frequency when people are awake. Unless recognized and treated by someone else, serious problems, such as grand mal seizures, can occur. If you have witnessed seizure activity or bizarre behavior, you have some idea of the danger that hypoglycemia unawareness can present. Fortunately, research and clinical experience has shown that this condition can be reversed.

What Causes Hypoglycemia Unawareness?

Hypoglycemia unawareness is not rare, occurring in 17 percent of those with Type 1 diabetes. Symptoms of a low become less obvious after having diabetes for several years because repeated lows impair the body’s release of stress hormones. The major counter-regulatory hormone that causes glucose to be released by the liver to raise the blood sugar is glucagon. Glucagon secretion is reduced in most people who have Type 1 diabetes within the first two to ten years after onset.

Brain desensitization to hypoglycemia: If a person has frequent episodes of hypoglycemia (even mild ones), the brain becomes "used to" the low glucose and no longer signals for adrenalin to be released during such times. More specifically, there are glucose transporters located in the brain cells (neurons). These transporters increase in number in response to repeated hypoglycemia (this permits the brain to receive a steady supply of glucose even during hypoglycemia). As a result, what was once the hypoglycemic threshold for the brain to signal adrenalin release becomes lower. Epinephrine is not released, if at all, until the blood glucose level has dropped to even lower levels. Clinically, the result is hypoglycemic unawareness.

Since repeated hypoglycemia is common in people with diabetes who strive to keep their glucose levels near normal, the incidence of hypoglycemic unawareness becomes more prevalent in patients who follow 'intensive treatment' protocols.

The most common treatment for this condition is to liberalize the patient's target glucose levels, in an attempt to decrease the frequency of hypoglycemic episodes. Hypoglycemic unawareness will sometimes disappear when the frequency of hypoglycemic episodes has declined, but this is not always the case.

Hypoglycemia unawareness may be triggered by:
A recent history of frequent low blood sugars A rapid drop in blood sugar Having diabetes for many years Stress or depression Situations where self-care is a low priority A previous low blood sugar in the last 24 to 48 hours Use of certain medications like beta blockers

Severe hypoglycemia occurred in 40 percent of people with Type 1 diabetes in one Danish study. Of those who experienced it, it occurred about once every 9 months with coma occurring once every two and a half years. The lower a person’s average blood sugar, the higher the risk for hypoglycemia unawareness. Hypoglycemia unawareness was three times as common in the intensively controlled group compared to the conventionally controlled group in the Diabetes Control and Complications Trial, with 55 percent of the episodes in this study occurring during sleep. Most people do not wake up during most nighttime lows. And recent low blood sugar depletes the stress hormones needed to warn them they are low again. The second low becomes harder to recognize.

A person's actions during Hypoglycemia Unawareness can be bizarre with:
irrational thought big time confusion anger or irritability running away insisting they "feel fine" in the midst of very unusual behavior high stress high emotions laughing and silliness

So.....be patient....and understanding....these people are not....normally hostile....not skitzo....and not drunk.

Try your best to get some sugar into them - high sugar soda, Powerade, orange juice, or  any type of simple sugar. Try to humor them and don't be too controlling or overly aggressive. With the ingestion of a descent amount of sugar, things should return to 'normal ' (hmmmmmm) in about 20 minutes or so. After this quick sugar stabilization, have them eat some more complex carbs, as the simple sugars will take glucose level up quickly, but then they fall rapidly also.

And, as always, ....Thank You for your help and understanding.

A Public Service Announcement

March is National Kidney Month-

How to Care for Your Kidneys

You know that a healthy heart and brain are vital to good health. But when’s the last time you thought about your kidneys? Each March, National Kidney Month reminds Americans what makes these organs so important. But it’s best to keep your kidneys in mind the whole year through.
Your kidneys are 2 bean-shaped organs found at the level of your middle back, below your ribcage. Like your heart, they’re each about the size of your fist. Kidneys play a key role in the body. They remove waste products that build up in your blood, along with extra water. These waste products then pass out of your body as urine. If your kidneys shut down or stop working as they should, it can lead to serious health problems, blogs like this, and all sorts of other things.
There are 2 major risk factors for kidney disease. These include diabetes and hypertension (high blood pressure). If you have one of these health problems, you can help manage your condition through exercise, diet, and other healthy living choices. Follow these tips to help protect your kidneys:

• Shoot for 30 minutes of exercise, 5 days a week.
• Try to trim down if you’re overweight (even losing a few pounds can greatly improve your health). 
• Limit the amount of salt in your diet (check food labels for sodium content).   Yeah Yeah OK OK.
• Cut back on alcohol if you drink. 
• Fill up on fresh fruits, veggies, and low-fat dairy foods. 
• Seek out healthy ways to relieve stress. (Try yoga, painting, or meditation. Stay away from photography).
• Nix the tobacco habit (cigarettes, cigars, chew, and all).

These tips are tailored to people with diabetes and hypertension. But anyone can better care for their kidneys by making a few of these changes. Although they’re not the most familiar part of the body, your kidneys deserve some extra TLC.

Thanks for passing this along Debbie!

Feel Like a Number

OK.....so it is February 28th....and I didn't win an Oscar even though the Best Documentary Feature went to a film called "Inside Job" (no relation). But I did have appointments with my endocrinologists and nephrologist and actually got good reports from both.

• I lost some weight.
• My A1c was on target at 6.7%.
• Fructoseamine was just a tad bit high at 329.
• Blood pressure was 104/63
• LDL and HDL cholesterol were both good.
• My creatinine levels, the tell-tale indicator of kidney function, was 3.04% which is a bit better than it was at my last appointment.
• My Glomerular Filtration Rate was 22 and this was a 2 point increase over the last test, which is good.(GFR): Your GFR tells how much kidney function you have. It may be estimated from your blood level of creatinine. If your GFR falls below 30 you need to see a kidney disease specialist.
  A GFR below 15 indicates that you need to start  treatments like dialysis or have a kidney transplant.

And so......when I asked the doctor just what has precipitated this positive turn in numbers he credited it to my staying active, staying hydrated, eating well (I try), maintaining good blood sugar levels and keeping my blood pressure in check. He told me this at my last appointment and I've been really trying so it's kinda nice to see a bit of a payoff. He also tells me that all this good news can't put off the inevitable, but rather it is
"buying me time." 

Although good living promotes good numbers I also credit prayers, good vibes, and the like from all of you, so Thanks for that!

As in most issues, good numbers make for a good day. It may be a mind game - as my friend John Barr said once:
 "The balances are all the same - the only difference is where you put the decimal point."

The decimal points fell in my favor today and I'll take it.

I'm a Bloody Good Blood Machine..........

You know it's a shame that they won't take my blood for just an outright blood donation because this is something that I'm really good at.
When the phlebotomists at the local annex take my blood, they always marvel at how good my veins are and at just how quick I fill the tubes.
This is good because this transplant business is all about blood tests.

• Each month the people at Pinnacle need a PRA (Leukocyte Ab Battery) Levels test.
• My nephrologist requires a Renal Function Panel which includes Alb, Ca, CO2, Cl, Cre, Glu, Phos, K, Na, BUN and CBC without Diff.
  Blood creatinine levels, just one of these tests, tell just how good your kidneys are functioning
  - the higher the number - the worse your kidneys are working.
• My endocrinologist, on a good day, only wants a Hemoglobin A1c - an average measure of my blood glucose levels over the past 3 months (as he gets to see the results of everyone elses' tests).

I am anxious to find out my latest numbers of all of these at my next appointments on February 28th.

So blood tests have been a marked part of my past, they are sure a big part of the present, and if things go as anticipated, they will be an even bigger bellwether in the future.
They tell me that post-transplant the "routine schedule" for blood draws are as follows:

• 0 - 6 months after transplant - blood draws are done twice a week.
• 6 - 12 months after transplant - blood draws are done once a week.
• 12 - 18 months after transplant - blood draws are done every other week.
• And after 18 months - blood draws are done once a month.

And so if it's true, what the poet Rainer Maria Rilke says, that
"All the soarings of my mind begin in my blood."
.....we better watch out 'cos there are a lot of  my "soarings" going around these days.

No side steps into Heaven.

Well, there goes my chance at this shot.....Transplant Ban on Papal Organs.
        Dammit!!!   Son of a..........   Oh. Wait.

Things that make you go Hmmmmmmm........

Just in case anyone has heard about this recently....the people at Pinnacle are on top of this and it's my belief that I've been counciled correctly and steered clear of this murky water.

Disclosure Of Organ Transplant Risks

I don't need no stinkin' gall bladder!

Wellll......that wasn't so bad! Thanks to my helpers Travis, Kara, Nick, & my Dad. And all those who offered to help. At the post-op check up, the doc said that I'm "a good healer" and that I'm good to go.
So it's upward & onward. This was my last hurdle and so I am now officially on the transplant list without any restrictions now. They tell me the average wait is 3 years, but since when are we doing anything around here on the "average" ? That's the latest from here. There you go Michelle. ; )

Hee Bee G.B.

Tomorrow they are taking my gall bladder.
I'm just a bit wigged, as I've never had a bad word with my gall bladder. But they say it's all for the best so I gotta' trust. Thanks to the EVERYONE who has offered me help, rides, prayers, and the like.

New......Year.....Start....Chances....Ideas....Blog

Ok....with the start of the new year and the circle of friends who know about my pending transplant surgery (hereto referred to as The Inside Job) getting larger all the time, I am launching this blog to keep all, if not most of us, on the same page. Don't feel compelled to check here like eight times a day as until the actual big event, the news will be slow to trickle in.

Regardless, this is going to be a journey and from here on out I'll do my best to let everyone who cares to know, how my current part of that journey is going. When the actual big day comes, I'll rely on my children to keep everyone updated and this will be the main venue for that. In the meantime, I hope I'm not too boring with the details. Please feel free to post your thoughts, suggestions, or ideas.

As always - know that I am grateful for any thoughts or prayers that you send my way and please know how much I truly appreciate each and every one of you and your friendship.

                                                                                                                       - bob