Video Update: My Diagnosis and Treatment

As you know, my diagnosis is Severe Aplastic Anemia. The good news is that today I didn’t need another transfusion! While my blood levels are all still severe, they aren’t critical enough to warrant a transfusion this week. I’ve been feeling really good the past week, and the bruising is subsiding. Thank you again to all my blood donors, and be sure to give blood and platelets if you can!  This is your last weekend to get an official Bone Marinara bracelet for donating!

It’s been a few days since I last updated everyone. The reason was that (1) I was waiting on a few final lab tests to establish a cause of my severe aplastic anemia, and (2) I would have a better idea of my course of treatment after my visit with Dr. Cataldo today , and (3) I was doing a bit of research on Aplastic Anemia’s pathophysiology and treatment.

That (#3) was a bit depressing. And a little scary at times.

But am I worried? Does it way on my mind? Hell no. I have the same philosophy of home-boy Peyton Manning. Priority number one:

Aplastic Anemia can be inherited or acquired. Exposure to chemicals, drugs and radiation have been known to cause Aplastic Anemia, but 75% of the time, we don’t know the cause of acquired Aplastic Anemia. I’m in that 75%. We don’t know what caused my disease.

Yay, science!

ZebraDeLis3We’ve ruled out viral causes such as parvovirus, Epstein-Barr virus, Cytomegalovirus, and HIV. (Side note: My wife Angela said that if I had HIV, she’d kill me anyway.) There’s one very remote possibility that this is another form of cell immunity problem called Paroxysmal Nocturnal Hemoglobinuria (PNH), but that’s going to be very rare. It’s like a ‘zebra’ diagnosis….when hear hooves, first think it’s horses…but remember that it might be a zebra.

Our working etiology (cause) is an autoimmune disease, where my immune system attacks my bone marrow, destroying it for some unknown reason. It’s like other autoimmune diseases similar to rheumatoid arthritis or lupus…but as Dr. House would say, “It’s not lupus!”

So, after 3 “Sneaux Days” here in south Louisiana (without any snow mind you), with all 4 kids home, I’m definitely ready to head to the Brewshack and share a beer with you. Here’s my video update:

I’m working on a post that will explain more about Aplastic Anemia and the treatment. Stay tuned, and thanks for everyone’s thoughts and prayers!

 

The verdict is….”Bad to the Bone”

Many of you have been waiting to hear about my doctors visit today. I was expecting either ‘bad’ or ‘worse’ news today. Luckily I had my #Mojo network in full force via Facebook from 19 states and 2 countries (THANK YOU), and my wife/BFF for support (and note-taking during the visit). Yes, I AM a lucky guy.

angela
Sexy reading glasses!

There was no truly ‘good’ news to share. Either Aplastic Anemia (bad) or Leukemia (worse).

First, the blood results, as anticipated remain dangerously low (Hemoglobin 6.5, Platelets 7, WBC 1.4).  Then the bone marrow biopsy results. Can anyone interpret the image below?

bonemarrowbiopsy
Pathology class flashbacks

The darker stain is bone. The lighter stuff is where the bone marrow is supposed to be. Instead, it’s over 95% FAT. Can you believe it? Less than 5% of my ‘bone marrow’ tissue is actually cellular.

That’s not good.

My wife (who is taking this as well as I am, by the way) said, “You’ve reached a whole new level of obesity. You have fat INSIDE your bones! I told you to lose some weight!”

Interesting fact: you expect your bone marrow to contain some level of fat, which increases with age. Rule of thumb is that you want (100-age) percentage of bone marrow. I have the bone marrow of a 95 year old.

The not-so-bad news is that it is NOT leukemia. I have “severe aplastic anemia” and that’s not good, but is better than the ‘c’-word. It’s what I expected. I’ll explain a little more in my next blog about where we go from here. I’m obviously going to start researching the condition and blogging about that as well, but in the mean time, you can get a head start on Wikipedia.

So the story isn’t done yet. We still don’t know a cause. 25% of the time, it’s viral (good news), 75% of the time, it’s idiopathic (not so good news). So, I had a few more blood tests today to rule out a virus, and we’ll know more about that next Thursday.  The phlebotomist at the Lake is getting to know me well. (Yes, those are 5 vials in addition to the stick I had an hour before that.)

blood
Dracula would drool

So, I’ll be back in the hospital again tomorrow for my 3rd transfusion. (Great way to spend your Saturday!) I hope the roads aren’t too bad. If they aren’t, and you haven’t donated, please consider getting out tomorrow to donate blood or platelets. I need both.

So, until I talk to you next time, feel free to click on the music link below and listen to my new theme song (disregard the incorrect reference to ZZ Top). Or you can click on this link and play the music (Thanks for the idea, Dr. Jeff Forman!). Or as my friend Teresa Schuemann said, “Bad in the Bone” is probably more appropriate!

How donating blood can save your own life!

My friend, Susan Hyde, sent me an email shortly after my call for blood donors. It demonstrates how you may actually save your own life by trying to donate blood…

Interesting story for you…. My 43 year old nephew is a high school teacher and donates blood regularly.  He went to donate blood in July and they told him he was anemic and couldn’t do it.  He went to his doctor, who tested his blood and put him on iron and told him to wait a few months to try to donate again.  In November, his school was having a blood drive and when he tried to donate, again, they told him he was anemic.  He went to his doctor again, who did an endoscopy and found a cancerous stomach tumor that was absorbing his blood.  He was totally symptom free.  They sent him to an oncologist who did surgery 3 days later.  The tumor was twice the size that they initially thought, but was self contained and had not spread at all.  If he hadn’t tried to donate blood, it could have been a long time before he had symptoms and it probably would have spread by then.  So by trying to donate blood, he received a great gift!

I want to thank all of you who have donated blood in the recent weeks. If I missed your name, please let me know. And don’t forget to claim your free Bone Marinara bracelet and Brewshack pint before the end of January!