Trending Upward: My Stock is Rising

I’m sorry for the delay in writing this post, but as you’ll see, it’s been a very crazy 2 weeks. One day is good; the next is bad. Luckily, I have my BFF Angela here to help me through it all. (Coach Angela)

angela-3

Today is a dreary day; a perfect day to be stuck inside while it rains. For some people….

gown

 

But I’ve been inside for 2 months (except when I ran on the tarmac between planes in my hospital gown). Just another day behind the computer and iPad for me.

So here’s a recap of where we are now:

Jan 4 Symptoms first noticed
Jan 20 Severe AA diagnosis confirmed
Feb 4 Admitted to NIH for Horse ATG
Feb 25 D/C from NIH; flew home
Feb 26 Admitted to OLOL for neutropenic fever.

  • Sepsis
  • Acute Renal Failure
  • Liver Failure
  • Peri-rectal pseudo-abscess
Mar 15 Transferred to NIH

  • Rectal Abscess
  • Fungal Pneumonia
  • Body Rash (drug reaction)
Mar 20 Surgery

  • Rectal Debridement surgery

 

Although it’s far away, I’m in the best place for my condition. One of the great things about the NIH is the collaboration of the different services; but it also makes for a lot of doctor visits during the day! At one point or another, I have been followed by hematology, surgery, dermatology, infectious disease, respiratory, PT/OT, nephrology, wound healing, transfusion, and pain management. For some reason, everyone wants to look at my butt!

You know it’s bad when the wound care nurse takes her first look at the wound and says “Oh Wow”.

surprise-01

My rectal abscess has been the biggest problem, requiring extensive cleaning and daily dressing changes. Transfers and changes are painful. Luckily, the wound continues to heal well and is reducing in size.

Other than the rectal problem, everything is doing well. I’m back on my Aplastic Anemia chemotherapy regimen. My blood pressure is the best it’s been in 6 years. I’m down to 215 pounds (from 265), although I know that’s mostly muscle wasting.

The main reason for transferring from the Lake hospital in Baton Rouge to the NIH was to receive granulocyte infusions. Only a few centers in the country provide granulocyte infusions.  When neutropenic patients have infections they can’t fight themselves, these infusions are given to add neutrophils to the system.

I’ve had 4 granulocyte transfusions, and that should be all I need. The transfusion itself is no problem, but I tend to have a ‘delayed’ reaction a few hours later where I get fever, chills, and pain associated with the infection. But nothing near the pain I was having at the hospital in Baton Rouge, which was only relieved with positioning.

I’m happy to report that things are moving in the right direction. I have good and bad days (usually associated with the granulocyte infusions), which makes it look like an upward trending stock.

upward trend

We always try to focus on the upward (positive) trends. Reaching milestones. Achieving goals. Angela provides daily goals for me, such as “Walk 3 times around the atrium” which is very motivational for me. (What better caretaker than a physical therapist?)

Now I’m able to sit up, which helps me to work (and blog!). I’m walking without assistance for medium distances. My body is starting to make its own neutrophils. My latest count was 150 (up from 0).  500 is a good goal to start with for a minimal level of protection, but ~1500 is normal.

I think this week will be very good for me. I won’t need any more granulocytes (hopefully), and will concentrate on getting my body to make my own neutrophils although there’s not much I can do about creating neutrophils; it has to happen on its own. We just have to keep on believing…. (One of my favorite songs)

I feel like God is breaking me down piece by piece for something pretty big to come. When I think about all the things I’ve been through, having some of the most painful, difficult, and life-threatening things to go through….yet having the best care from the doctors, nurses and of course Angela…to believe more than ever, “We got dis.”

 

 

 

 

Back in the Saddle. My Return to the NIH.

I again apologize for such long delays between posts. The combined pain and lack of sleep has made it very difficult to keep up so please bear with me :) But the good news is that after nearly 3 weeks being bedridden and unable to sit-up, I am finally able to sit upright on a cushion to type on a computer! Here’s the story of how we got to this point. Enjoy!

sitting

I was admitted to the Lake on February 6 in sepsis with kidney and liver failure. I developed a rectal abscess that was inoperable because of my low white cell count. This gave new meaning to the term, “Pain in the Ass.” Daily antibiotics by IV, restoring kidney and liver function, and literally ‘bringing me back to life.’ However, there was no cure for my rectal abscess unless I started producing white blood cells.

The NIH had a life-saving treatment that the Lake couldn’t offer (granulocyte transfusion). On Friday afternoon (March 14), while wrapping up day #16 at the Lady of the Lake Hospital in Baton Rouge, we found out that we would be transported back to NIH that night on an air ambulance.  I wasn’t able to sit upright and tolerate any type of commercial flight; I required transportation via stretcher (Although lay-flat first class may have been tolerable….and much cheaper!)

The problem was that we had to leave that night. After a bunch of work between our social workers at both hospital facilities, insurance companies, and doctors, they agreed that I couldn’t fly commercially and needed to go now on a med-evac jet.

Fortunately, I was able to see my kids in the hospital room, knowing that I may not see them again for quite a while. I sure miss them.

my-family

Angela rushed home to pack our bags for an indefinite stay. I made sure that she packed plenty of chocolate for herself since that’s her ‘therapy.’

The ride to Baton Rouge airport was tolerable on the narrow stretcher with minimal padding; but I knew it was a short drive.

Luckily I had Angela there by my side the whole time.

back-of-amb

I tolerated each bump down I-110 in the anticipation of a more comfortable stretcher on a medical transport jet, obviously designed  for transporting those more critical patients. As we boarded the plane,

image

This was nothing like the brochure. Must have been the old bait-and-switch.

I think they booked my flight on cheapairambulance.com.

This is the view from the cabin door of my table I laid on. Literally, I’m taking up half the width of the plane.

airamb

The plane itself was as wide as a queen sized bed. There were 3 seats, a jump seat, and table  with a thin pad on it (i.e. “stretcher”). The table was 6″ long and about 14″ wide except for the equipment you see above installed just at hip-level thus reducing the width to about 11″. As you can see, they used as many straps as possible to wedge me in there and keep me from falling, let alone moving at all.

And I tried to remain as motionless as possible to minimize the pain.

For 2 hours.

Again, Angela was right by my side in the jump seat. She also had a good view of the landing at Dulles (since there’s really no door to the cockpit), watching one pilot say, “No, go to the one with the green lights on the left.” as he pointed out of the windshield.

We finally landed, with me still only in a front hospital gown, going from 70s to 50s, walking from the plane to ambulance.

We arrived at the NIH about 1:30 AM EST on March 15. They had a room ready for me and a physician even did her work-up. I believe I was able to get a little bit of sleep after all that, but little did I anticipate what I would go through the following day.

That first Saturday of my return to NIH began early with a CT scan of my head, chest, abdomen & pelvis.

The great thing about NIH is that you see doctors immediately and you get your results almost immediately.  No need to wait for your doctor to call, or go for a follow up.

Not here at the NIH.

These docs just come into your room and say, “Well from you CT Scan , we can see that you still have fungal pneumonia.”

FUNGAL PNEUMONIA? Where did that come from? That’s the first I’ve heard of that. That sure as heck doesn’t sound like  a good thing….And I don’t even have any symptoms!

Everyone (and I mean EVERYONE) who comes in my room from whatever service, nursing shift, whatever, listens to my lungs and says they are are fine.

Well, as you may or may not know, my neutropenia (lack of white blood cells to fight bacterial, viral or fungal infections) is my main issue right now. I have no immune system to fight. And fungal infections are among the worst to get rid of. So you can imagine my fear.

Apparently, on my recent stay at NIH, they saw some ‘spots’ on my lungs as well, and said they had spread to what’s consistent with fungal pneumonia. So what’s next?

BRONCHOSCOPY

bronchoscopy

What an unpleasant experience. They shove a tube down your throat into your lungs to look around and clean out your bronchioles. Luckily, they sedate you.

But it’s the recovery that killed me. The coughing. And you know what coughing does to sore rectums? You can only imagine the pain.

Then came the 2nd PICC line. My first PICC line here at NIH went great. But for some reason, this lady had a little more difficulty, and I was not happy.

Of course, Angela was there the whole time and told me that in my post-sedated state I was yelling, “Stop sticking those needles in my arm!”

I spent all of Sunday trying to get comfortable in the bed, which took quite a bit of patience and artistry from Angela wedging pillows and bolstering body parts.

Let me tell you, sitting isn’t all that bad. As with anything, Sitting is Good in Moderation! If you can tolerate it!

 

 

 

 

Another round at the NIH


First of all apologies for not posting recently on the blog. But it’s been a rough two and a half weeks. For those of who don’t know, when I attempted to return from my first three weeks at NIH I immediately developed sepsis, acute kidney failure, and liver failure the morning after I got back home.

How’s that for a welcome home?

I apparently developed a hemorrhoid that created an abscess which infected my entire body.

What a pain in the ass.

image

After seeing very little improvement in both my immunity, white blood count, and the pain in my ass (they really couldn’t treat the hemorrhoid), the NIH suggested an alternative treatment for my immune system since I’m not responding to the original treatment as they had hoped.

The only problem is that I can’t sit on a plane for 2 hours to get back there, so Angela and I are flying on a medical evacuation jet with a hospital bed so my ass doesn’t hurt.  We leave today and should get to NIH tonight.  We don’t know how long we will be there, but I will start to receive granulocytes (white blood cells)  in an effort to increase my white cell blood count.

The next step I ask of everyone is to visit the site bethematch.org to see if you can be a bone marrow donor. I believe all you need is a mouth swab to be added to the registry. It is easy to do. It doesn’t take much time and you can potentially save my life or someone else’s life.

http://bethematch.org/

Thanks again to everyone who has helped me and my family through this difficult time. Thank you to everyone for your continued thoughts and prayers. At this time that’s pretty much all we can do.