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.