Heading Home. Finally.

The National Institute of Health. That’s how healthcare should be practiced. No worries about insurance. It’s all about the patient, outcomes, research, and improving overall healthcare.

NIH_Clinical_Research_Center_aerial

11 pints of blood. 10 units of platelets. 4 horse-serum IVs. Lots of pills.

And room service.

All within a United Nations atmosphere. I literally had doctors and nurses from over 13 countries working on me. Really cool.

Miracles happen here every day. I’m sure mine started here. I really enjoyed the care I got here. This is part of my medical team:

nih-team

The team loved the horse head. Doing rounds a few days after the serum, I hid behind the curtain as the entire team came in and was told I had a new side effect that the epidemiologist had to be called in on. Classic. They were taking my photo!

Last week, I talked about the climb. But I’m ready to run. I’ve been inside literally for 3 weeks.

I think a big part of my recovery will be in exercise.  It’s not part of the ‘traditional’ protocol, but I am hopeful that walking and resistance training can stimulate my bone marrow, specifically my immune system, to start producing cells.

So, we’re leaving the long halls at the NIH clinical center that we walked nearly every day for 3 weeks, that got me 3 miles a day.

hall
This is only half of the trail!

We’ll be back in 2 and a half months for a follow-up (and bone marrow biopsy…ugh!). In the mean time, we’ll go home with lots of medications and face masks.

How do you like my mask for the flight home? (Thanks for the idea, Maggie)

facemask

So with that, Angela and I want to thank everyone that helped make our 3 weeks here possible. As you can see, we needed a lot of help (Forgive me if I’ve missed anyone!)

  • The staff here at NIH, especially the nurses that cared so much
  • Dr. Cataldo and nurse Ester, who helped get all the paperwork
  • Nevon, Brandy, Michele, and Kim for taking care of the kids
  • Lorraine for helping clean the mess with Nevon
  • Marla and Dan for helping to watch kids
  • My Mom & Dad for helping to watch kids and transporting them
  • Cheri & Blaine  for the ride and for taking care of the ranch
  • Jay & Courtney for the ride and the visit, as well as the gift
  • Bart for the ‘welcome gift’ and visiting with Kate
  • Frank for the long drive and visit
  • Marc for the visit and ‘scoop’
  • Jacque Jr, Jacque Sr, Dewey, Jackson for the rides, support materials, and popcorn!
  • Chase for helping transport and watch kids
  • Everyone at my work, especially Ethan for support and their gift
  • Everyone at Angela’s work for their understanding and support, and the gifts
  • My TRAC family for the gift and support
  • Everyone who called, texted, sent cards or offered to visit
  • Everyone who continues to donate blood and platelets around the country!

And everyone else who offered help, support, thoughts, prayers and of course #MOJO!

We are not finished yet. Going home starts the second stage of the process. There’s still a long road to recovery.  My immune system is basically gone. I remain at high risk of infection, which would be a medical emergency for me. We hope it will build itself back up within the next 3 months. In the mean time, please forgive me if I act like “Monk” around you.

monk

 

 

 

 

 

A more positive direction

Sundays are quiet at the NIH. Only patients and nurses here on the floor.   A few staff and researchers roam the halls where I walk 3 times a day.

hall

There’s an occasional message over the loudspeaker in the hall. But otherwise, it’s a quiet day. A day to be a little philosophical on the blog, so please bear with me. It’s therapeutic.

I remain optimistic that they will discharge me in the next few days…which is important for me because I want to beat the Mardi Gras rush to New Orleans. I won’t know for sure what they want to do until the doctors see me tomorrow.

I’m still learning to take this one step at at time…”Page by Page.”

As someone who likes to plan ahead and be in control as much as possible, you can imagine how difficult this can be. Specifically, not knowing what’s next, or how I can fix it. I’m always planning for contingencies. “What ifs.” How to fix it once it breaks, which is inevitable.

Fix-It-Felix-Jr-pic-jpeg

That leads to a lot of stuff that can mess with your head.  Lots of “negative” thoughts rather than the positive ones. So, when these negative thoughts pop up, I have to quickly change my thoughts to the ‘right’ direction.

Negative
Positive
Fear
Strength
Conflict
Peace
Anxiety
Calm
Despair
Hope
Anger
Happiness
Impatience
Patience

 

The “right” direction. That’s obviously in the positive direction.

If you remember positive charges and negative charges from chemistry class (which I never really enjoyed), negative charges create electrical fields toward the negativity. Positive charges create electrical fields that push outward.

positive-negative-direction

Negative thoughts breed more negative thoughts. Positive thoughts move us away from negativity.

So for me, it comes down to a ‘mind game.’ The more I sit here and think about the “what ifs,” and the negatives, the further I move from the positive direction.

It’s important to recognize those negative feelings, acknowledge them, and quickly change to the positive thought direction. No matter the situation, you can find the positive if you look hard enough. You may not find it at first, but it’s there.

That can be tough, particularly when something is out of your control.  But it can be done.

Sometimes you have to look for the positives outside of the immediate situation that creates negative feelings. In general, if you sum all the positives, they always outweigh the negatives.

positive-negative

For example, when my blood pressure reads high, I try to remember that I’m in the best place I can be for treatment. I remember all of you who are thinking about me and pulling for me. There are so many other things that I could be facing right now besides being homesick.

The hardest part of the battle is dealing with things that are out of your control. As long as you are doing everything you can, physically, mentally, and spiritually, that’s all you can do.

So no matter what you’re going through right now, you have to keep doing whatever you can to make a situation move in the right direction…toward the positive.

positive-direction

 

 

 

 

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Signs of Progress

As I spend my 3rd weekend here at NIH, there are signs of progress.  They say I’m doing well today; my red blood cells and platelets seem to be holding, but my white cells (neutrophils) remain critically low.  My blood pressure is cooperating for the most part.

There’s nothing more to do now but wait and see how my immune system rebuilds itself. The horse serum treatment effectively killed off all my white cells, and they may take a while to get it back on track.

I’ve remained here because of high blood pressure they believe is contributed to by the steroids they gave me to prevent serum sickness. I’m doing everything I can on my end: watching what I eat, walking 3 miles a day, and of course using my TheraBands.  One of the benefits of treatment here is that I’ve lost weight… I think about 10 pounds! (probably because I haven’t had any beer in 3 weeks either!)

And these steroids have done wonders for my physique:

steroids

But I don’t think this new physique will last as I’m hopefully going to be off the steroids tomorrow. That will allow them to put me back on the cyclosporine drug that I will take for at least 6 months as my immune system rebuilds itself.  I’ve also started the eltrombopag drug that they believe will help my counts as well.  It’s just going to be a long road to recovery.

Oh, and Happy Birthday to my sister Marla and my son Andrew. See you guys next week!

I got ‘dis.