ITP does not discrimate when it strikes its next victim. It affects the young and old, rich and poor all over the world. Dealing with this blood disorder is no easy task. The fear and frustration of not knowing where the roller coaster will take us next can be daunting.

This blog is for ITPers to express thoughts, feelings and lessons learned during their ride. Send your post to greta799@yahoo.com. We want to hear from you.

Thursday, October 25, 2012

Peace, love, and high plates!

Jay Jacinto has been through the mill yet he retains a wonderful sense of humor that makes him a joy to interact with.

Jay and his wife, Karen have had their share of ups and down with medical issues but always come out on top with a positive attitude and a willingness to help others.

Karen has started a support group for caregivers. It is an outlet for spouses with loved ones going through chronic illnesses and disease. Faith, Hope and Ribbons can be found at https://www.facebook.com/groups/504238456262511/?ref=ts&fref=ts

Here is Jay's story...
For most of my adult life, the worst I had ever suffered was having severe asthma attacks and bronchitis, and a touch of pneumonia. Oh, and a nasty bout of chicken pox when I was 19, NINETEEN!!! 

My work history mainly surrounded doing retail sales and customer service, so stress was definitely nothing new in my line of work. I met my wife in 1993, and we corresponded for 3 years before actually meeting IRL (in real life). November of 1996, we married, and began our quest down that marriage road.

My life has had its shares of ups and downs. Building homes in Mexico, celebrating our 10 year anniversary, finding out we were expecting our 1st child (after 10 years of trying), rebuilding homes in Mississippi, discovering we were expecting our 2nd child not long after our first child was born, and going through the enlistment process with the National Guard are just a few of the great UP memories I have. The 13 stars I have tattooed on my left arm are a reminder of my life since being married in 1996.

During my enlistment process, the military doctor at MEPS told me that during the physical, I had elevated blood pressure, and asked if I had taken any protein supplements or anything prior to the physical. That was a shock to me, as I had never had any problems with my blood pressure. This was in March 2009. I went to my PCP, and he noticed my blood pressure was elevated, but passed it off and told me not to worry, it is in the OK range, so off I went. A few months later, as we were moving to Arizona, I started noticing headaches and vision problems. We passed it off as stress related to moving (which is another story in and of itself), and because the line of work I was currently doing revolved around spending 8+ hours in front of a computer monitor or 2 or 3, it was relative to eye strain and fatigue. Again we dismissed it. As we settled in Arizona, the vision problems got weirder, when I started experiencing problems with distinguishing between the color blue and green. When making the formula bottles for our youngest, my wife would remind me that I was putting the wrong color cap on the bottle (putting blue on green and vice versa). We laughed at that, and just thought that was part of the oddity with my eye strain. We made a point to go see an optometrist when we came back to California (as we had family friends we visited often). By this time, my vision suffered greatly, where it became nearly impossible to drive at night.

July 2009 was when I was initially diagnosed with ITP with counts down to 21 alongside developing kidney disease and high blood pressure/hypertension. The ER doctors could not figure out what was going on, nor explain why my body was literally shutting down. The doctors took my wife aside and told her that, in their opinion, I was not going to survive the night based on the lab work and prognosis they had in front of them. I spent 3 weeks in the hospital, going through 16 plasmapharesis treatments, and left with my counts at about 187. We rested a couple of days before trekking back to Arizona, back to our home. 

Getting back to "normal" took some time. I suffered some nerve damage from the ITP, as well as some calcium deposits in my knee and finger joints with the kidney failure. Playing with the kids was not the same, getting around with ease was not the same, as I had to walk with a cane, or when things got worse, use a wheelchair. We relatively eased back to normal life, and I even started working part time again. We thought everything was good; we knew what signs to look for with ITP and with my blood pressure under control, I was on the road to full recovery.

May 23rd, 2011 is a day of infamy for me. I was working with a social media company, and had my foot in the door to getting into the "thick" of the business. I wasn't feeling too good, but not enough to worry about, so I left that morning to meet my boss at the new office building. I straightway went to work, getting the network connections going, and connecting the computers/laptops for internet service. I felt flush and tired, but thought it was simply because of just how much energy I was spending in a room that didn't have sufficient air conditioning. We stopped around 12PM and decided to go to Subway for lunch. I felt sicker than before, even my boss noticed it, but I trudged on. I barely finished my lunch, and my head was pounding even worse. I told my boss I was done for the day, and needed to get some rest for tomorrow. So off I went to go home, but soon as I got home, I told my wife I wasn't feeling good, and thought I should go to the ER, against her better judgment.

My plate count was 18, my blood pressure was 220/140, and the ER staff was hard pressed to try and fix one thing without losing sight or control of the other. My first week in the ICU was filled with high doses of steroids, rituxan, pain meds, blood pressure meds, and countless vampire bites. I was there for 3 months, endured almost 3 dozen plasmapharesis treatments, almost as many dialysis treatments, 4 rituxan treatments, a BMB (bone marrow biopsy), and enough tests and x-rays to fund buying our own house, car, and a few luxury toys.

Here I am, 14 months in remission, and things are coasting. My plates are stable for now, my blood pressure fluctuates, but all in all, it is going good. Now, to deal with my shoulder pain, and dealing with which arm to fix first.

Peace, love, and high plates!

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