My Body Became Benedict Arnold or All About Lupus

Systemic Lupus Erythematosus, SLE, is a terrible auto-immune disease.  It turns the body into a big fat traitor - maybe even worse that Benedict Arnold.

Antibodies which should go after viruses and diseases to protect the body, become traitors and attack the body wherever there is connective tissue. Which is everywhere. Most deaths by lupus are kidney failure and heart disease.  

As a teen, I was poked and prodded by doctors who would look at me, then at each other, then cluck,  "Yes, it looks like lupus, but we just can't prove it."

The 'looks like' part was my face.  I had healthy looking rosy cheeks with the rosy even going across my nose.  A marking just like the furry face mask of a werewolf! Really just a regular wolf. And that is how lupus got its name. From Canis lupus and her furry mask.

The rosy mask was a curse.  I looked so healthy, but was so sick. Waking up with what looked and felt like a sprained ankle when I hadn't sprained my ankle.  Barely able to use my hands because my wrists hurt so bad.  Unable to play my violin because my left index finger joint was so swollen and inflamed. Having super high fevers and stabbing pains in my back. Sleeping for days. Watching the ends of my fingers turn completely white when they got cold. Sitting down for coffee and a chat, then barely being able to walk because my knees weren't working right. Having such paralyzing fatigue that I just wanted to lie on the floor and cry. I was convinced I was a lunatic.

I had lots of tests that proved nothing.  Some not bad at all, but some so disgusting.  I speak of the radioactive kidney scan which required a prep.  A nurse came in with a glass of castor oil to which she added a little cup of baking soda.  I had to drink the whole nasty mess.  Gag! So please never complain to me about your colonoscopy prep.  Gator Aid? Castor oil?  You pick.

If lupus is suspected today, the patient just has a blood test.  In 1967 the only way to find lupus was the bone marrow test.  The doctor sticks an elephant needle into your sternum without any Novocaine or anything and sucks out some bone marrow.  So simple yet so excruciating. OMG!

I remember thinking, "How can I run out of this building without any clothes?"  And I remember telling the nurse to keep talking so I could focus on her voice and not on the skreek-skreek-skreek of the needle as it penetrated my unsuspecting sternum.  When the needle sucked out the marrow, it felt like my very soul was being extracted.  Yikes!.

The genius head of the hematology department at Indiana University Medical Center did the bone marrow test and gave me the diagnosis. I was in ecstasy to find out that I was not crazy, but had something called Systemic Lupus Erythematosus.  The unknown can be so frightening.

Here I am fifty years later.  I've had to take some nasty drugs that had nasty side effects. Like 6-Mercaptopurine that caused horrendous birth defects and required a weekly lab to check for depressed bone marrow.  Hey!  I need all my bone marrow!

And loads of prednisone (steroids), that made me eat like a pig and get a moon face that made me look like a chipmunk. I also discovered just before going down the aisle in my bridesmaid dress, I had a light fuzz of hair on my back. So pretty in pink. Prednisone also  leaches calcium from bones and causes muscle wasting in arms and legs. I have taken lots of other drugs, but not with such drama!

I have had to avoid sunlight, which can trigger a flare up. In those days sunscreen was like the lube truckers put on their 5th wheels and had to be made by a pharmacist. I have lived with the fatigue (naps don't help), and the joint pain. 

But I have triumphed.  Hoorah!  I have had a great life and plan to continue to have an even better one.

What lupus has done to my body is unforgivable. Who can I sue? By trying to reject my own kidneys, the filter screens have been damaged.  The damage caused high blood pressure which caused more kidney damage.  A vicious cycle.  Imagine that the filters should be like window screen. Mine are like chicken wire. 

That is the story of lupus and I and why I need just one good kidney! 

For more information about lupus, visit the Lupus Foundation of  America at https://resources.lupus.org/. 

And Benedict Arnold can go to you know where.

For more information about giving the Gift of Life, contact my exceptional team at IU Health Transplant Center at University Hospital in Indianapolis:  800 382 4602 or 317 944 4370 or online at www.iuhealth.org/transplant. 

"The Alien Baby Must Go!" or What I Had to do to Get on the Transplant List

Qualifying for the Transplant List begins with failing kidneys.  Check.

Because I am over seventy, the next step was a face to face meeting in Indy with Dr. Nephrologist, a member of the Transplant Team. It felt like an audition.  I considered wearing a costume and taking my castanets.

Then there were the tests - stress test, echo cardiogram, chest x-ray, colonoscopy, dental exam, mammogram, blood and tissue typing, leg circulation tests and Pap smear. Check.

I was telling all of this to my great nephew and when I got to Pap smear, he said, "I thought that was a drink."  

"That's Papst Blue Ribbon beer," I replied.   

"Oh, yeah." 

I passed the tests for hepatitis, syphilis, AIDS, Epstein Barr and tuberculosis. Check.

And the tests for every drug known to man. Check.

At last I have certification of sorts that I am not a lunatic. I was not referred for more psych evaluation so I must have passed the psycho/social tests. Check.

After passing all the tests I assumed that I would be put on THE LIST.

"Raise your hand if you're on THE LIST!  Not so fast, Mary Ann."  

The head of the transplant team, Dr. Chief Surgeon, has concerns about The Alien Baby.  What?

In 2014, Dr. Nephrologist here in Bloomy wanted a scan of my kidneys. He discovered a very, very, very large cyst on my liver.  I named it The Alien Baby.  

It was decided that The Alien Baby was benign and should be left alone - until Dr. Chief Surgeon in Indy said, "No! The Alien Baby must go!  It could go berserk and cause an infection post-transplant and we don't need to deal with that!"

So The Alien Baby was removed by fabulous liver surgeon Dr. Magico at University Hospital in Indy on September 18, 2017. It weighed seven pounds.  OMG.

Dr. Chief Surgeon is happy. I am happy. My liver, kidney and diaphragm are happy.  Everyone wins!  Except The Alien Baby.

I should have taken a before photo.  If I had, I would have looked like this.  (Thanks, Photoscape.)

This is my new body after getting The Alien Baby removed.  

I had to remove photographs of The Alien Baby. It was scaring too many people.

FAQ'S ABOUT DONATING A KIDNEY (I only need one!)

HOW DOES ORGAN DONATION WORK?

• You only need one kidney to live a healthy, long life.

• Kidney donor surgery is done laparoscopically, through tiny incisions. There is a short hospital stay.

• The recuperation period is usually about two weeks.

• My insurance will cover the cost of evaluation, diagnostic tests and surgery.

• You will have a separate team of healthcare professionals to evaluate you as a living donor.  The Donor Team's job is to help you understand the risks and benefits and to look out for YOUR interests.  The team includes a separate advocate for donors.

• Studies have shown that kidney donors do well after donation and continue to have an excellent quality of life, similar to (or even better) than people who have not donated.

WHO CAN DONATE?

•  Any healthy adult with a compatible blood type and tissue match.

• In addition to family members, donors include friends, coworkers, acquaintances or strangers.

• No history of blood sugar problems/diabetes.

• Mentally healthy

• Altruistic motivation

• Evaluated on individual basis:

          •  High blood pressure

          •  History of cancer

          •  History of kidney stones

          •  BMI of 32 or more

               

•    WHAT IS THE FIRST STEP?

•      Call IU Health Transplant at 317-944-4370 or 800-382-4602
•   ·  Contact is not a commitment and is strictly confidential.
•   ·  Mention my name, Mary Ann Hope
• 
  

WHAT IF MY BLOOD TYPE IS NOT O+?

• If you are willing to donate but do not match my blood type, there is a Paired Donor Exchange Program.

• A computer database cross-matches donors and recipients.  For example, there may be someone who wants to donate a kidney to me, but he/she is not a match.  My donor could donate a kidney to another recipient if that person also has a donor who is not a match, but is a match to me.  The two pairs 'swap' kidneys.

 PLEASE VISIT THESE WEBSITES FOR MORE INFORMATION:

• www.youtube.com: Search:

         • Kidney Transplant: What to Expect / IU Health         

         • Kidney Transplant Donor Surgery - Laparascopic Live Donor Nephrectomy,                                Dr. Chandru Sundaram

•  http://iuhealthlearning.org/video/transplant 

•  https://www.donatelifeindiana.org/  

•  www.iuhealth.org/transplant

•  Donate Life America: www.donatelife.net/living-donation/

• United Network for Organ Sharing (UNOS):  www.transplantliving.org

• National Kidney Foundation:  www.kidney.org

• Transplant Experience - Astrellas:  www.transplantexperience.com/Kidney

PLEASE FEEL FREE TO FB MESSAGE ME ANY TIME WITH QUESTIONS!

          CHEERS AND THANK YOU! 

   

                       MARY ANN :)

        

Why I Need a Transplant - My Kidneys are Wimps

My name is Mary Ann Hope. My full time job is searching for a living kidney donor because I’m losing my fifty+ year battle with lupus.  Even though I’m seventy now and made liars out of doctors who said I wouldn’t survive twenty, my kidneys are finally giving up, the wimps. Riding my pony and dancing keep me looking healthy, but my lab numbers say otherwise. My living donor search is imperative since I may not survive the five+ years wait for a deceased donor kidney, I may be so damaged from dialysis that a transplant won’t be possible or I will be too sick to undergo the four hour surgery. A living donor is my best chance for survival.  What follows is my story:

I have had a Bucket List since I was a little kid. I wanted to be a cowgirl, violinist, dancer, teacher, writer, drive a big rig, sing in the Messiah and be in the circus. I haven’t gotten around to the last one … yet.

I am blood type O+, but my transplant center has a Paired Donor Program, where my donor may match someone else whose donor might match me.  I feel hopeful that a donor will come forward for me!

For more information about giving the Gift of Life, contact my exceptional team at IU Health Transplant Center at University Hospital in Indianapolis:  800 382 4602 or 317 944 4370 or online at www.iuhealth.org/transplant. 

Please mention my name, Mary Ann Hope.

Thank you!

This is the rest of my story ……………..

In my first ballet lesson at age five, I was too awestruck to be afraid of the Russian teacher who beat the rhythm on the floor with a stick taller than me.  I was hooked.  I tour jete’d through much of my life until I collided with Flamenco, the raucous, emotional dance of the gypsies of southern Spain.  This dance remains a vital part of my life thirty years later. The costumes are gorgeous and you can’t have too many! 

After teaching Special Ed for a couple of years, I rode off to a quarter horse ranch in Illinois. My job was transforming  towering ex-racehorses into regular riding horses.  My motto was “Just Stay on and Don’t Die!” 

I then drove an 18-wheeler cross-country hauling “go-go girls”, trucker talk for hanging sides of beef.  I got off the road because I couldn’t stand the music anymore and retired from the truck line twenty years later. I retired again after another fifteen years in the Ballroom Biz.  So stressful!  I had to pick out a fun party outfit every week!

My move to Bloomington, Indiana was to be near my family. I added on to my sister Nancy’s home so we could be crazy old ladies together with our poodle, Lucy.  My nieces, Hope, Jill and Beth are my rock and support group.  Watching their children, Lindsey, Lincoln, Sydney, Ben, Lilly and Hadley grow up is the best entertainment ever!

Adorable, sweet pony Flash and I have been in dressage training for the past two years and LOVE learning new movements. He is my best friend. (Horse people will get this.) Our goal is to show in the Century Class, where horse and rider ages equal 100.  We’ll make it – we’re 95 now!

Dancing with my flamenco family, Baila!Baila! is a fiesta wherever we perform.  I have been forced to travel to Spain several times for flamenco shows and classes and to ride magical Pura Raza Española horses. Flamenco in España is unrivaled and riding a PRE is just like riding a unicorn!  

Someone has to do it. 

¡Olé!