You may die from this, but don't worry, it's harmless - Part II

  

   This is the second part of Arnold Schwartz's ITP roller coaster ride. If you did not catch part one, just scroll down to last week's post.

   

Chapter II

I continued the rollercoaster ride of cbc's, but no treatment even after moving here to Florida in 2000. I met,and married my love. A true Florida cracker girl in Martha. A no frills, no nonsense country girl with a heart of gold, and a temper to boot. When she met my grandmother (from Moira,County Down,Ireland), Grandma whispered in my ear," She's a good Irish girl." That was all I needed to hear.:) Grandma approved. But Martha like my best friend, didn't approve of doctors. She held strong to her family's beliefs.

      After seeing my first hematologist here, he recommended spleenectomy asap. Gave me the prednisone prescription to bump up my platelets, for surgery. Confusion continued as he told me I had a disease that could kill me.When I told him I never received treatment, he told me,"That's ok.It isn't serious. Acne is more serious then ITP." I shook my head and replied, "But You just said it's deadly."

      "That's right it is, but no worse then acne. Don't worry bout ITP,"he replied. Confused I said," So I can just walk out that door cause it ain't serious?" He got mad, and said," You are a damn fool if you think you can walk around untreated with this deadly disease,you will die from this untreated." I walked out utterly confused...Maybe Martha's family was right about the medical establishment...

In 2005 my employers health insurance changed, and I was required to get a once a year check up at the least. My new pcp was an amazing woman from Texas. She was shocked I wasn't under the care of a hematologist. Two dreadful cbc's later, she held my hands, and I saw tears in her eye's. "If you where my brother, I would drive you right now to the hematologists. You have a serious deadly disease, Arnold. You need medication." My people pleasing kicked in and I went to see yet another hematologist.

I spent the next 3 years riding the familiar roller coaster, of up and down cbc's. Random nosebleeds,bruises, and petechia. My treatments would start, if my next test was lower. But when the next test came, I was back over 50K. This doctor would tell me never to treat until later in life. That the steroids damaged the liver. The spleenectomies rarely worked. And the IVIG was too costly to my employer. Still confused, I rode the roller coaster ride. Until 2009,when my hero and best friend became a victim to cancer.

My mum was diagnosed with stage 4 brain, lung and colon cancer in Nov 08. A spot was found on her lungs back in 07, but she refused to go forward, or tell anyone....In 09 she passed away (I could write an entire book on this part...but I am not ready to go there...) My platelets average began to fall to 17-30K. My oncologist, amped up the tests to weekly, but still forbid treatment, telling me he had patients with counts under 10K, that he will not treat. I assumed the low counts where due to my mum's passing, and would rebound. But they never did. Maybe I never got over the guilt of leaving home, and breaking her heart? I still have family to this day, remind me of her broken heart. Was I to blame for her death, like I was for my dad's drinking? Maybe I deserved all this because of the hurt I caused them?

In late 2010, I began to have bad headaches. Really bad ones. Dizziness at times. My pcp doctor felt it was from my high blood pressure, that I was fighting for years.(just like dad). But he ordered a MRI, just to be sure. The MRI did find cysts, and polyps in the front nasal cavities. Very close to a brain membrane, which he said are benign. But the MRI did find evidence of a brain bleed in the back of my skull. Sometime during 2010, I bleed there. "But Arnold,don't worry about it." I replied, "But that's how my father died..." After being told it was just a coincidence, I drove home taking 2 hours, wondering what to do...Confused...

My oncologist moved to a new office in 2011. Oddly enough his views on treatment have changed. The wait and see attitude, was gone. Replaced with treatment options, including the new N-Plate drug I had brought up 2 years ago, but was shot down as too risky. Showed him the MRI results,and he looked at me and made me cry, "Arnold you have fought this for too long on your own. It's time you get some help." I didn't bawl, but years of sitting in these offices alone, walking home alone, being scared alone, made tears stream..." Of course his pretty nurse comes in, and I go into my clown routine for them all. It's what I do best I guess.

When my counts flirted with 20K, he applied for N-plate, but my employer refused. Only Prednisone, ivig, and splenectomy would be covered if proven. My doctor was furious at my employer. He ordered Prednisone for me after negotiating with me for a short term trial. For the first time in my 16 year journey I would join the Prednisone alumni. I was relieved and scared outta my mind at the prospect, of finally taking the fight to the invisible opponent inside me.

I quickly discovered all the rumors of Prednisone to be true, the incredible rush of energy, the insomnia. I only got 2 hours sleep in 3 days, but was still wired all day at work. Never yawned once. Hunger pains tormented me the entire time. Massive headaches. My blood pressure was through the roof. My home testing machine broke the day I got a 195/115 reading. However my fight with blood pressure, gave me the wisdom to up my potassium intake, to fend off the sodium retention qualities Prednisone is famous for. I ate more bananas, apples, grapes and almonds. That helped to keep the Blood Pressure scare at bay.

The incredible joy was amazing when after the first week, my platelet counts rose to 159,000!!!!! I was sooo overjoyed, I hugged the medical assistants, nurses, doctor, and anyone else in the office. I asked the doctor if I could ride horse, (A dream of mine to do, but not allowed cause of the ITP risk). He said if I get another decent count, I could, as well as ride the roller coaster rides with Martha again. I was on a unbelievable high...until my next week of tests.

      My counts crashed to 50K, as the ITP flexed it's muscles. I was crushed, and confused. My doctor still ranted about my employer. He really wanted to try N-plate on me. I was slowly weaned off the Prednisone, as he said he doubted it would work, if my ITP was that strong. He would reapply for N-plate. I walked out the door in the comfortable confused state I knew so well...

What I discovered along the way, was that I was never really alone. When I laid on the stretcher, for the bone marrow biopsy, for the first time in many years I prayed. I prayed to my heavenly creator. I didn't pray for a cure for me. I prayed for him to look after my family, if this turned out bad. I began to pray more for my family then later friends I knew who where hurting. I began to have a very personal, relationship with my creator. Yes 99% of the time Martha will not go with me. I respect her views. Yes, none of my online support group is there in the waiting room with me physically. But my heavenly creator is. I don't feel alone when I remember that.

I have had an incredible opportunity to be touched by people with ITP along the way. In the early days there was no internet in my home town. Only in late '99, did internet cafes pop up. That is where I discovered ITPPEOPLE.COM. It was an incredible moving feeling to see other people talk about ITP. If it weren't for Joan Young, and her relentless effort to get pdsa.org going, I think my battle would be alot different. Through the forums, I met hero's of all ages. Casey Grant is a hero to me, always will be. I met Pamela Ford, who lobbied hard for N-Plate trials, after her son battled his much stronger ITP for years. I had the privilege of meeting Pamela and her family the day before I had to leave to see my mum before she passed. An amazing lady.

During my dance with Prednisone, I was invited to a special ITP group on facebook. Say what you will about Facebook, but it has changed everything about the way I face this journey. I have met so many that are worse off then me. Some on steroids long term. Some on experimental drugs. Some having thier spleens removed. This all puts things into perspective for me. When I think about feeling sorry for myself, I think of those around me worse off. My creator gave me the ability to look around. I do, and it helps.

I have met many amazing fellow ITPers here. Linda, who from day one is like an aunt to me. Dale, who grew up in the same part of town as me!! Though he went to Thom Collegiate...Yuck!!
Elaine who like my Grandma comes from a beautiful island...She reminds me sooo much of Grandma's wit,and wisdom:):) Jan, Tom and Hap make me laugh on days I feel like crying. I know I have missed many, and I know to some this is silly. But your unending understanding of a absolutely Idiopathic disease/disorder/condition is so comforting.

Chapter III

I'm just getting my second wind. Someone ring the bell. It's time for round 3!!
May GOD bless you and yours for reading this.