Ob-la-di, Ob-la-da

Lately, I haven't had much to say. Post-transplant life was not turning out like I expected and its bumps and dips were leaving a bad taste in my mouth. Life went on.

Last week, a traumatic post-transplant dip/valley/planet-sized crater happened. I went from feeling "pretty ok" to barely capable of sitting up or speaking, in gross amounts of pain and bone-chillingly cold in a few hours.

It turns out I had a kidney infection, which quickly progressed to sepsis and took over my body. I was admitted, my fever subsided within a day, but the nausea, vomiting, pain, and general inability to function persisted a few days, until I got transferred from the local hospital to my "transplant team" hospital.

At the local hospital, my immunosuppressant level was overlooked when they treated my new infections with antibiotics. The local doctors,not well-versed in transplant medicine, conitnued my immunosuppressant medication, and the level skyrocketed to beyond toxic levels, essentially overdosing me on prograf. (For fellow transplant folks, my prograf level was 54, and ) I felt physically the worst I have felt in my life. My head was splitting, I couldn’t stand light or noise, my body ached, I was nauseated and exhausted, unable to sleep and desperately dependent upon IV-infused dialudid(synthesized morphine that's 7.5 times more potent than morphine) that never seemed to be enough or on time.

I was given activated charcoal to drink to de-poison my system, but, like the sips of water I hadn't been able to keep down for the previous two days, the charcoal didn't stay down. As bad as it tasted going down, it was further painful and horrible tasting having it all come back up--only it took all day to get rid of it rather than the half hour it took to drink it. The doctors ultimately decided the only option was to flush me “manually” with saline and lasix.

Those days of detoxing are really a gray area in my memory.  Everything was too bright and too loud, a jarbled mess of pain and vomiting and sweating and dilaudid. There's big gaps of missing time and endless hours of no sleep. I lost control of my body and its functions, getting out of bed was traumatic and dizzying, staying in it was endless achiness and repeated hallucinating.

After a couple painstaking days of forced detox, my body began to regain its ability to function. I could carry on somewhat meaningful conversations and keep my head outside the covers. My dilaudid demands slowed and my hallucinations stopped. I enjoyed a heavenly breakfast on my day of discharge; chicken broth and jello never tasted so good. In fact, the last 6 hours of my hospital stay felt like as quick a turn in the positive direction as the original onset was in the negative.
 

So, right now, in my post-valley peak, I am grateful and renewed and amazed and delighted at my good health, the world and my blessed presence in it. The sun is brighter  than when I went in. Early mornings are sweeter and late nights are savory-er. I don’t want this appreciation to go away.

As before, life goes on.
It just tastes better now.

Life Is A Battlefield

It started with a surprise kidney infection in December that just held on. Three hospital stays, a bout with sepsis, a prolonged pneumonia scare and three months later, the kidney infection was still holding on. And during the battle to defeat this intruder, my body was getting attacked on all different fronts. A surprise infection here, a cough there, skin rashes and antibiotic side effects. I was getting weighed down.

While new infections were parading through, my parvo virus number was again on the rise...it grew exponentially to a simple >100,000,000. That's a really big army for my suppressed immune system to put down on its own. I felt like a target for infection and there are no Allied Forces to call on to back up my troops.

Dr Wali tried to make light of the situation, calling me "the most unique patient I've had in 5 years." I smiled, trying to take pride in this...I always wanted to be special...He explained that the multiple rejections I had early post-transplant(more specifically the treatment of them) were showing long term effects on my body. My immune system has been seriously disabled.

Ugh. Not the kind of special I had in mind.

I try to explain the situation metaphorically to myself like it's a war, a battlefield, but each time it requires that David defeat multiple Goliaths to make it through each battle and then do it all again the next day. Like "Groundhog Day," only with exhaustion and illness. In my head, I got stuck and sad and accepting and defeated.

And quiet. Really quiet. I didn't want to share this, to taint anyone's perspective on whether transplant was a good idea for them or to show my shield of strength was cracking or admit that I was scared.

But I was scared. I was tired. I stopped exercising. I slept more but didn't feel rested. I juggled hospital visits for treatment and multiple doctor appointments. I tried to research how other people dealt with this, but I couldn't find anyone in a similar-enough situation,

I haven't found any answers and last week it dawned on me...it doesn't matter how other people handle it. The only things that matter are the steps I'm taking right now.

That was a rude awakening, because I was only taking steps in the wrong direction.

A transplanted kidney lasts an average of 10-15 years.
A transplanted pancreas lasts an average of 10 years.
Time is ticking and I can't let any more of it go to waste with sadness and fear.

I started with an excruciating mile and a half run/walk.
The next day I moved back into my strength routine.
I changed my perspective. Period.

At the end of each day, I want to be proud of myself.
At the start, I will focus on what I've got and not what I'm not.

It's very simple.
Inspiring.
And that's who I'm choosing to be.

Catching Up

The past month has been a struggle. 

My post-transplant immune system has led me to the ER three times, gotten me admitted twice and pushed me to spend a total of 13 days in the hospital.

It all started with fever, chills and migraines that wouldn't quit. First trip to the ER determined a surprise UTI as the cause. Then followed antibiotics and brief improvement.

Fast forward two weeks and exact same symptoms returned, only worse. I was admitted and treated for the now stronger UTI, sepsis(which had come from UTI) and the flu. Five days in the hospital and a week of IV delivered antibiotics at home brought relief.

Round 3 came a week after antibiotic treatment ended, and it was the worst yet. All the same symptoms, except even worse and additional complication of intense pain in my transplanted kidney and severe dehydration. My blood pressure was dropping to dangerous levels because of the sepsis and dehydration. 

I realized I was too sick to drive. 
My head was killing me.
I was dizzy and off balance. 

I got a ride to my doctor's appointment. When I arrived, I was worsening. According to the lab tech, when I tried to stand up, I was doing "the dance." I heard her yell for help and felt her supporting all my weight. I couldn't keep myself up anymore.

They took my blood pressure: 59/43. My nurse told me I was going to be admitted. I responded with something I've never said before: ”I want to be admitted." I knew I was sick.

The next few days were whirlwind-y. I felt badly, but no one knew what was wrong exactly. i was quarantined for the first 6 days and only saw 3 people each day: 2 nurses and the doctor, all masked and gowned for everyone's safety.

Tests revealed I had the flu and a UTI and sepsis and a kidney infection and pneumonia. My transplant team concluded that the original UTI I got a month ago was never fully eradicated, got stronger and had brought on the kidney infection and sepsis. The kidney infection had spread past my transplanted kidney and into my native kidney. They were running cultures and trying to treat all this, but my headaches weren't improving and my fevers didn't stop. I was receiving a wide array of narcotics, antibiotics and rest-inducing medicine...my head was muddled.

The transplant team acknowledged they were concerned and didn't have the answers or a treatment plan. Hearing this while at such a low point physically was the most disturbing message I've received from a doctor yet. 

Infectious Disease was called in to help. Their team tried multiple different antibiotics to see which one my body responded to positively. After some painstaking trials, they found one that was effective at fighting the unique type of pneumonia I had. A CT scan revealed that the previously unknown cause of my headaches was a very aggressive sinus infection. No one ever determined the cause of the fevers that remained long after they should have disappeared, but ultimately they also stopped. My body, after having been through so much physical trauma and medication, was so eager to simply rest.

Eight days in the hospital and I was cleared. Pneumonia was the toughest and scariest one. It took a while for them to find the right weapon(antibiotic) to use in battle. On the morning of my release, Dr Piper pointed at the monitor and told me how beautiful my lungs were. I laughed, grateful to be able to after the preceding week.

I am home now, and again on home-based IV antibiotics. I don't mind as much this time around; I really just want to be sure every possible bug/bacteria/threat is gone. I have been cleared of pneumonia and sepsis. The antibiotics are still chipping away at the kidney infection and sinus infection. I am still recovering from the illnesses and the treatment.

My head spins thinking about it all. I'm trying to be safe and rest, take care of myself. The hectic and stressful past and the unpredictable future haunts me when I lay down to rest, trying to take care of myself, trying to recover physically and mentally.

I'm tired and scared and alive and grateful.

 

And envious.

Envious of my body, my flawed and burdened body, 

resilient in the face of every challenge.

My exhausted and tattered body, 

with its telltale scars, battle wounds, wrinkles and stretch marks. 

My perfectly imperfect body, 

and its miraculous, against-all-odds, what-doesn't-kill-me-makes-me-stronger, never-say-die indomitable spirit. 

I can't wait for my mind to catch up.