Category Archives: Hospital

I’m coming home!

Perhaps Ozzy said it best.


Ozzy Osbourne – Mama, I’m Coming Home by randolert

My friends and family ask, “Are you sure you’re ready to come home this time? Did you try and talk your doctor into early release?” They are referring to my last discharge from the NIH, where I tried to get home before Mardi Gras, only to turn immediately around the next day and be admitted to the Our Lady of the Lake Hospital in Baton Rouge for sepsis for 2 ½ weeks.

The fact is, this time, I simply said that a goal would be to be home by Easter. When my neutrophil count started to come up, Dr. Townsley started talking about releasing me this week…and a day earlier than I anticipated!

simpsons-woo-hoo

I know I’m a little stir crazy right now, but I wanted to thank the doctors and nurses and all the staff at the NIH for helping me through this. The pain I had 3 weeks ago in Baton Rouge was so unbearable…and the NIH pulled out the “big guns” to put me back together to now fight my Aplastic Anemia. Plus I have a newfound respect and admiration for nurses. They do a wonderful job.

nih-team

So yes, I’m coming home today if everything goes smoothly…no fever, no symptoms, and of course, no flight delays! And boy am I looking forward to seeing everyone, sleeping in my own bed, eating some great food, and hanging out at the Brewshack with family and friends! But if you do visit, I apologize in advance for being a “germ-a-phone” until my neutrophils come back in.  And don’t even think about coming to see me if you are sick!

monk

But I’ll be back in about 3 weeks for my 3 month follow-up from my initial visit to the NIH. Hard to believe it’s been almost 3 months since I got that horse serum and those side effects!

Post-horse-serum-treatment

The bad news is that I’m probably a month behind my treatment and response schedule for the Aplastic Anemia because of my sepsis. The good news is that now that I’ve received the granulocytes here at NIH, and started back on chemo and the experimental eltrombopag drug, I’m back to treating what started all this. And it seems to be working since my counts are increasing. They say my bone marrow is ‘awake’ now and just needs to start pumping out cells.

Most importantly, my neutrophils are up to 200. (They were 10 at my last discharge!) What’s really cool is that my TheraBand workout for the past 3 times has consistently shown a 30-point bump immediately after each workout that’s maintained the next day, which I rest from resistance training. I continued to walk about 2 miles a day. #ExerciseIsMedicine! But who knows, maybe it’s the 8 medications and 26 pills I have to take everyday. Better health through chemistry?

pills

I will continue my treatment (and exercise) at home under the care of my hematologist/oncologist Dr. Cataldo, including weekly blood tests and transfusions if needed. The longer the time between transfusions the better, meaning my bone marrow is starting to produce the cells I need. In the mean time, please continue to donate blood and especially platelets, which I seem to need more than blood. Thanks to all of you who have given the gift of life to me, who I hope I recognized on my Donors page (if not, let me know!).

On that note, I want to thank my good friend John Hisamoto, a physical therapist / athletic trainer in Tampa who owns Pro-Active Physical Therapy, who helped organize a blood drive, “Pints for Phil” with the University of South Florida to get over 100 pints!

HisamotoHowever, we’re not out of the woods yet. There still remains a chance that I may need a bone marrow transplant. I will need to find a full match, and that takes time. The chances of successful bone marrow transplant can depend on the length of time from diagnosis to transplant. Right now, we don’t have a full match….but that full match may be one of you. Or you might be the full match for someone else who desperately needs a transplant.

All it takes is a quick mouth swab to see if you’re a match for someone. If you are, all you usually have to do is provide your blood for a recipient (not your actual bone marrow!) So, we’re having a combination blood and bone marrow donor drive on Saturday, April 26 at the United Blood Services at 8234 One Calais Drive from 8AM to 2PM. (Just off Essen and I-10). You can donate your blood AND get swabbed for bone marrow donor at the same time. It’s 2 for 1! Talk about efficient! (Special thanks to my sisters in law, Brandy McIntire and Kim Heard for helping to pull this together.)

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All of this brings me back to one of my favorite bands, Cowboy Mouth (of “Jenny Says” fame), from New Orleans. I met the founder and lead singer, Fred LeBlanc on a plane to Phoenix a few years ago and he invited me to his concert. I immediately fell in love with their music. One of my favorite songs is “New Orleans” from the same album….my destination this evening before reaching hometown Baton Rouge!

Thank you again for all of your prayers, thoughts and MOJO. It seems to be working, so keep it up! Hopefully I’ll be over this soon and won’t have to wear a mask anymore. That way I won’t have to start shopping for new mask designs!

surgical mask

Could this be my last week in the hospital?

psychoI’ve been in the hospital for 2 months now and I’m going a little crazy.

Luckily, this past week went by very quickly…which is good because I’m ready to get home.

Back to see my kids (who can’t seem to feed animals without adult supervision), my own bed, good food, family, and of course, the Brewshack! (even though I won’t be drinking any beer for a while)

brewshackAngela went home yesterday after 3 weeks of being the best caregiver anyone had seen here at NIH.  All the nurses commented on how great she was, and as I said before, I wouldn’t have made it this far without her.

Before she went home, we were allowed out on a pass to eat dinner outside the hospital. We took a shuttle to the Marriott down the street and had a great meal. A table. A server. Real silver wear. Steak.

dinner

You really take simple things like eating at a restaurant for granted after being cooped up for 2 months. Of course, I’ll have to make some changes to my diet to prevent food-borne infection while I’m neutropenic, like avoiding raw foods (no sushi!), cold meats, and buffets.

This week started out a little rough as I received my 4th round of granulocytes– blood cells from a donor that help fight infection in people like me that don’t have the cells needed to fight infection (neutrophils). I’m very grateful to the donors and the transfusion doctors. Without them, I don’t know how much longer I would have lasted, as the infection was eating my insides without any way to fight them. The pain I was having in Baton Rouge before returning to NIH was indescribable, and nothing but the granulocytes would have fixed it.

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What worse place on your body can you have an infection…the dirtiest place on your body…your butt. Just imagine how hard it is to heal a wound in that area. Nonetheless, we’ve worked really hard to keep the wound clean and promote healing with the help of surgery, infectious disease docs, and nursing. And occasional pain medicine.

Kinda brings back memories of our wound care training (what little we had) in physical therapy school, although they never taught us about rectal wound healing! (I’ll be glad to send you pictures if you want, but won’t be posting them here).

Every day, one team of docs or another wants to take a look at the wound. Obviously, my modesty left a long time ago and I’m happy to show my rectum to anyone — as long as they leave a dollar in the jar.

dollar-in-jar

I continue to be as active as possible here. When I left here 5 weeks ago, I was walking 3 miles a day. When I returned 3 weeks ago, I  had reverted to a rolling walker, walking slowly in my hospital gown and no-slip socks down the hallway from my hospital room.

walkerYesterday, I walked 3 miles, including one mile outside on hilly terrain here (compared to flat Baton Rouge!). Obviously, Angela was a great coach, setting daily goals (including stair-climbing!).

The docs here don’t generally promote exercise, but seem to be coming around. They praise my walking, but don’t really encourage it. They tend to like their pills and IVs…and it seems most medicine prescription is driven by lab reports. “Oh, your blood test shows your magnesium is down, so we’ll give you magnesium IVs. Don’t worry, it only takes 3 hours to infuse.”

So I wanted to conduct a little experiment. I just read a research paper where cancer patients were able to maintain their white blood cell counts by performing TheraBand elastic band exercises! A little more research and I found that resistance training can help increase neutrophils…exactly the cells I need to fight infection.

Unlike red blood cells or platelets (which are the other cells that my bone marrow can’t produce), neutrophils (white blood cells) can’t be transfused. They have to produce on their own. There’s really nothing you can do to increase them.

My doctor told me I would need to have a count of 100 of absolute neutrophils to consider going home (200-250 would be even better!) My count on April 3 was 80. The next day, it was 130. Then I did my TheraBand workout and had my blood tested immediately.  Guess what happened?

A 30 point jump to 160! And I maintained it for the next 2 days. My doctor said, “It must be the medicines taking effect,” to which I quickly replied, “Exercise is Medicine!”

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My doctor said if I keep my neutrophil count above 100 this week, she’ll let me go home later this week.

simpsons-woo-hoo

I continue to pray that my counts stay the same or rise and that nothing happens to prevent my discharge like an infection. Interestingly, my biggest risk comes from myself. I will be taking extra precautions to prevent getting sick (to the point of being a germ-a-phobe). The doctor said, “We used to keep people in a bubble to prevent infections from outside, but we realized that most infections come from the patients themselves.” My exact case for becoming septic in the first place.

john-travolta-boy-in-bubble

I’m pretty much a month behind schedule in treating my aplastic anemia from the sepsis, but I’m taking the chemotherapy drug (cyclosporin) and the experimental drug (eltrombopag) now. I return here in a few weeks for my 3 month follow-up from my initial treatment. Can’t wait for that bone marrow biopsy again.

homealone

They will be taking me off the IV antibiotics (I still get 4 a day) starting tomorrow. Your thoughts and prayers and MOJO are always appreciated to keep me on track to get home.

And hopefully stay home this time.

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)

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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.”