The Cost of Battle

If I can compare the 20 days in the hospital to anything, it would be 20 days in enemy territory getting shot at and dodging explosions. In the movies, when the lead actor escapes the battlefield there is a moment of personal inventory. What’s bleeding? What’s broken? It’s just good to be alive. That’s the point. To survive no matter what. In the movies everything heals over time.

I’ve been taking inventory the last few days.

Hearing – more lost thanks to the 20 days of tobra. I can’t hear some high pitch sounds in our house like the alarm. The sound is gone to me. My ears play Jingle Bells 24/7. I left for battle and the explosions took their toll. When I returned, some of my hearing stayed at the hospital. Hasta la vista, high pitched sounds.

Lung function down over 20 percent according to the PFT in the hospital. Will it come back? Let’s hope.

O2 levels normal. That’s good news. So far so good.

Low grade fevers and chills. Still hanging on me. 5:00 p.m. rolls around and it’s time for a nap and baby bottle for me. I’m gone. The CF center seems content to let me suffer through them each day. It’s probably my anger talking. I’m still irritated about some of the decisions or delayed decisions of the stay. The CF team is solid though. I know they care. They just have a lot of patients to deal with.

Over 10 pounds shredded thanks to sitting on my ass doing endless IVs and a lack of an appetite for the same bland food every day. The endless fluids they gave me in the hospital masked the weight loss. At least I’m not peeing 20 times a day anymore.

No blood. That’s a good thing. It hasn’t returned yet. If it does, I can’t decide if I’ll go back in the hospital or just hunt down the people who couldn’t get it right after two embolizations. I’ll throw them on a table and cut into their groin and see how much they like it and educate them on the importance of getting it correct the first time.

Aches and pains. I could use a little time on a medieval torture rack being stretched right now. Or tie me between two horses and pull my limbs until my back pops and I get back the two inches in height I probably lost in the hospital. Tell me again why they don’t offer massage therapy in the hospital? I can get all the morphine I want while I’m there, but a little quality time face down with a certified member of the massage community digging her knuckles into my backside is verboten.  That makes no sense.

All in all, I got my ass beat. And that makes me angry because it’s embarrassing to get beat up. Worst of all, CF didn’t do all of the beating. The doctors helped and I did my part with mistakes I made. Hindsight again. I wonder if I can have it removed? Life would be easier if I weren’t tortured by my errors. I should have seen the landmines, been more aggressive about getting the embolization done quickly instead of waiting six days. There were plenty of other errors I made. Where did my courage go while I was there?

Home at last

After 20 days in the hospital, I returned home Friday night. But not in great shape. You’d think after that period of time in the hole and amount of IV antibiotics, I’d be walking in, refreshed, strong and ready to get back to life as normal. Instead, it felt like I’d run some kind of endurance race or Ironman and barely had the strength to cross the finish line or threshold of my front door. I fell over the line exhausted and disoriented.

Three weeks ago, cystic fibrosis picked me up in its monster hands like I was a rag doll and tossed me hard to the ground. I didn’t see it coming. And after 20 days of sitting in a room the size of some walk-in closets, my body and muscle mass have deteriorated and my mind feels twisted and tired. The physical bruises of blood draws, the PICC area and embolizations will heal over time, but the rebuilding of everything else will take longer. But still I feel lucky. I survived. And that has to be enough for now.

Thank you for all of the comments and well wishes. They made a difference each day. A big difference. My apologies for not replying yet. As the stay lengthened, it turned into both a physical and psychological battle that sapped my energy. Most of the time I escaped into episodes of Dexter and Californication, movies or reading, when I had the energy. Anything that took my mind off of cystic fibrosis and the situation helped and became my mental Band-aid. Now it’s one day at a time as I come back to life.

Despite everything that happened, I still stand by my claim: I am the luckiest guy in the world. CF hasn’t beaten that mantra out of me yet. It’s my F.U. to the disease. CF can choke on it.

Dark Thoughts Slither Back

Two weeks ago today I sat at my computer. With my airway clearance completed and a stomach full of McGriddle, I had the entire weekend ahead of me. Would we spend it at the beach? Any local events? What to do. Then I coughed and it was blood. Not a lot, but a surprise. I wasn’t exercising or doing anything that might create that result. But there it was in all of its glory. And I knew the weekend was gone and I needed to bother my doctor for some cipro on a weekend.

Today, I sit at the computer, an iPad, and my location is a hospital room. Day 14 of this unbelievable odyssey continues. And though I’ve done a good job up to now holding back certain thoughts I’ve fought with for 30 plus years, I feel like giving up, ending it. It’s all so overwhelming – the past two weeks and the future. I’m not sure how I am going to do it, balance everything, work, life and possibly oxygen for the first time. The O2 feels like the least of my worries. Just trying to keep my life as I know it presents the most fear. Do I have the energy to live it?

I used up all of my fighting-stress reserves the past two weeks. I have nothing left. I feel like a piece of safety glass fully cracked and splintered. One tap to it with a hammer is all it will take to shatter the glass into a thousand pieces, never to be put back together again.

Hospital Update

(Written on my iPad in my hospital bed; please excuse typos)

Day 12 of the endurance test continues. After 9 days of fountain-worthy bleeds, one bronchoscopy, two separate embolizations, morphine dreams, four days in a hell called ICU, and steroid hallucinations, the demon known as Hemoptysis has withdrawn. No traces today. Just unfriendly memories. But I’m not out of the woods yet. The 11 days of vacation from airway clearway may have felt nice, but did a number on my lungs. The bacteria have fled to their bunkers and it’s taking the big bombs and hypertonic saline to loosen their hold.

Afternoons are still tough. I do a header into bed like a drunk Olympic diver who hit his head on the edge of the board – I get zero points for my bellyflop entry. I’m still on O2, which is thanks to the lack of airway clearance, inflammation and the party juice they gave me during eight hours of procedures. I’m proud it took them a ton of drug to knock me out. I remember cracking bad jokes right before the bronch and hearing someone say “how much have you given him?” Then I heard about the amount before the second procedure because they were surprised how much it took to shut me up (my wife asked for some to go). We’re not talking about Michael Jackson status here, but the King of Pop and I could have partied together, IVs in tow to see who who could stay awake the longest. Unfortunately, my lungs are still paying the price for my endurance and there’s no “hair of the dog” cure sitting around ready to be mixed.

Embolization hangovers are the worst.

I’m making light of a serious situation again. I hate when I do that. Shit, I’m alive. And I can tell you that this experience made me realize I got everything I wanted in life. I have two California girls who love me and who I’m going to hug like stuffed animals when I get out of here. That’s more than enough to get me through life. More than enough. I am the luckiest guy in the world. Believe it. I do.