Update: Follow-up doctors visit

Saw my Hematology/Oncologist physician, Dr. Vince Cataldo as a follow up after my hospital stay (more on that in the next blog). Dr. Cataldo was chief resident at Charity and was actually one of the docs stuck there for a week! Can you imagine how strong that would make someone? He also did his fellowship at MD Anderson in Houston; so I think I’m in pretty darn good hands. Which reminds me of one of my favorite commercials (watch his arm at the end)

funny-doctor-appointment-hourToday’s visit went well; although a 55 minute wait after appointment time (which is one of the things this experience is teaching me…patience).

Had my blood taken again in the office and didn’t have to wait a day for results! My complete blood count (CBC)  :

  • Hemoglobin 5.9 [vs. 13 low normal, vs 5 on my initial admission and 7 on discharge] relates to the amount of oxygen carried by my red blood cells, causing shortness of breath
  • White Blood Cells 1.4 [vs. 4.3 low normal vs. 1.8 on my initial admission and 2.0 on discharge] relates to ability fight infection
  • Platelets 25 [vs. 150 low normal vs. 13 on my initial admission and 39 on my discharge] relates to my ability to clot, leading to bruising and prolonged bleeding

While these levels are at or just below my hospital discharge levels, they are still below normal. This means I get to have another transfusion tomorrow. Good news is that it will be as an outpatient, so I’ll be able to work (lots to do, ya know!). In addition, my heart murmur is gone, but my pulsatile tinnitus remains (an interesting symptom of anemia!)

The not so good news is that my original biopsy from last Tuesday was inconclusive. It was done under a local anesthetic, and apparently didn’t have enough cells to be conclusive. But that could also mean that my bone marrow isn’t present either, the main sign of aplastic anemia. So, I’ll have to have another bone marrow biopsy later this week under sedation. Stay tuned for that adventure!

The leukemia diagnosis is still possible, but not a high probability because I don’t have it in my blood or in the biopsy. It’s still on the table, though.  Some have said that leukemia is better to get than aplastic anemia…we’ll see about that! Both can end up with a bone marrow transplant.
I’ve been getting several people asking about picking up a virus in Japan. There’s a slim chance I might have picked up a virus, but Dr. Cataldo said that is typically related to reductions in red blood cells, not the ‘big 3′. We’re keeping that on the table too. I’ve emailed the CDC to see if there have been any reports, but I don’t think personally there is a link. I heard there’s radioactivity in the sushi, which made me think of this video tutorial on eating sushi:

Thanks for the continued thoughts and prayers! One day at a time, or as my daughter Hannah said to day, “Take it Page by Page like a book”

How this started: My symptoms

My situation came to a head on a Saturday morning, January 4, when I was on the treadmill early in the morning.  I had noticed a decline in my jogging on the treadmill in the previous days. A little over a month prior, I ran the 5K Turkey Trot in about 40 minutes (albeit slow, I never walked or stopped!). But now I was having trouble walking at 3mph on the treadmill. I was out of breath. My legs were burning. Something wasn’t right. Could it have really been just the weight I gained over the holidays? Maybe I just wasn’t using the treadmill correctly…

I then tried to take down the Christmas decorations on the house, and continued to be very winded  and not feeling well. My wife Angela joked that I was faking the symptoms to get out of un-decorating. But I knew something was wrong. I thought it was something cardiac related, as I’ve been on blood pressure medication for quite a while. I was feeling dizzy, and took my blood pressure, which was also lower than my ‘normal’ (about 130/70).  So I got to enjoy my man-chair and TV relatively guilt free on a Saturday.

Starting to look up symptoms on the Internet, I found that cardiac ischemia, pulmonary embolism/DVT, and heart failure led to dyspnea (difficulty breathing) with activity. However, I didn’t have any chest pain. My cardiologist and friend, Dr. Darrin Breaux, saw me Monday morning and had several tests run: blood tests, EKG, venous ultrasound, echocardiogram, and stress (Treadmill) EKG.  I had a trip coming up to Lima, Peru and had to figure out what was going on as soon as possible. If I had an embolism, the high altitude would kill me.

The staff at Baton Rouge Cardiology was great; they were very friendly and professional. They took me through all the tests. Even the ultrasound tech had an interesting connection: she was a soccer player at Mississippi State just after I left graduate school there in 1992. Go Dawgs! I immediately emailed the clinic administrator to give kudos to everyone (and you should do the same when you have great, or even poor, service!).

I lasted 5 minutes on the treadmill with a Bruce protocol (My VO2 is estimated at 25, whereas normal sedentary men are 35 ml/kg/min). Dr. Breaux called me that afternoon with my test results: nothing out of the ordinary considering my hypertension. We would wait on the blood test results the next day.

One thing I had noticed was a symptom called “pulsatile tinnitus“.  This is where I hear every heart beat in my right ear. It’s a continuous throbbing sound in your ear, which is essentially an echo from your carotid artery into your ear.  The only thing I could find on the Internet remotely related was intracranial hypertension. Yet another diagnosis to look forward to.

But my symptoms just didn’t fit together. Shortness of breath with minimal to moderate exertion but no chest pain, relatively normal cardiac testing, and pulsatile tinnitus. Hmmmmmmmmm.

petichia
My leg petichia

It wasn’t until I met my hematologist/oncologist at the hospital that night that started piecing together things I’d noticed the month prior, but didn’t connect: bruising, petichia, and gum bleeding.

 

Check out the next step: My first hospital admission!

How did we get to this point?

My name is Phil Page. I’m a 46 year old father of 4. I have a bone marrow disorder where my blood cells are very low (red cells, white cells, and platelets). It’s a condition known as pancytopenia, and it’s a symptom of Aplastic Anemia or Leukemia. We don’t know which it is yet, or how or why I got it. All I know is that this condition is rare and can be fatal, and it may require a bone marrow transplant. If it’s Aplastic Anemia, the survival rate is 70-80%.

My kids and I. This was taken when I first visited the hospital for my transfusion

When I was in the hospital for the first time, I was told that one of my nephews, Hunter, asked his mom, “What is Bone Marinara?” That became the name for this blog, which I hope will continue when all this is done.

I know that others are going under some times and conditions much worse than mine. I’ve chosen to have a positive attitude and to share my experiences for not only my coping, but for my family and friends to follow my journey. I want this to be a learning experience for my children as well by using humor and education.

I am a nerd. I work and play behind a computer every day, searching for information for my job and myself. I’ll be sharing lots of links to more information, particularly using Wikipedia, and other ‘credible’ sources…but always remember to take what you hear on the Internet with a grain of salt. One our favorite ways to remember this is the State Farm commercial below:

I will be sharing the good and the bad, hopefully providing some education, inspiration and the art of survival with a few smiles along the way. There’s a chance this might all blow over quickly, or it may turn bad quickly. Either way, I’ve decided to chronicle my journey for my family and friends, hopefully beyond this part of my life, to continue sharing my approach to life.