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.

And The War Rages On...

I am confident and nervous. I am grateful and skeptical. I am eager and scared.
The back and forth makes my head spin and my stomach queasy.

My parvo titer has been rising. For those of you who are not transplant-recipients-with-a-very-rare-immune-system-response-to-a-very-common-typically-asympotatic-virus, this means the level of the parvo virus in my system is increasing. A lot. And the loss of oxygen carrying red blood cells is coming.

"Healthy" is 0. I have never, since diagnosis, reached 0. My initial number, at diagnosis, was 1,030,000 and I felt especially sick. Like admitted-to-the-hospital-and-given-multiple-blood-transfusions sick. Like the-doctors-treating-me-had-never-seen-a-number-that-high sick. The lowest I have reached, in June, was 26,857. My last result is so high, the lab can't even quantify it, it simply reads a vague  >10,000,000.

Yes...greater than 10 million.  I refresh the lab results web page twice in disbelief. I count the zeroes a few times to be sure. It all feels simultaneously ridiculous and teetering-on-the-edge-of-hospital-admission serious.

In September, I was fighting a cough and cold and congestion, for weeks. This led to a sinus infection, pneumonia, and multiple rounds of steroids and antibiotics. Ultimately the right combination of meds and my less-than-efficient immune system won the battle.

As my doctor made clear to me at my last appointment, the war continues.

The next battle is upon me. Congestion, cough, sinus pain. Trying to nip this one in the bud, I head to urgent care, get diagnosed with a sinus infection and bronchitis. Ironically, I feel an eerie victory in this:
a) I don't have pneumonia. 
b) Those two things are completely treatable. 
I am physically ill, but it's not insurmountable. It's another battle I am set to win. I hope.

Honestly, I am weary of the relentless battles. I am struggling to retain the optimistic perspective I need. Dr Wali, in his "war goes on" speech, reminded me that this war is lifelong, it's a balancing act that I will be responsible for forever. There's no vacations, no time off for good behavior or even days that half-ass-effort will get me by. And the rules will keep changing, tolerances will adjust, resistances will build up, drugs will have side effects, and viruses will return.

Viruses, like parvo, the one that's snowballing in my body now. No one knows how long it will take for the virus' red-blood-cell-destroying power to start affecting my day-to-day life, or even if it already has. Is that why a run-of-the-mill cough turned into pneumonia a month ago? Is that why I'm struggling to fend off the runny nose my son had for two days two weeks ago that, for me, has turned into a sinus infection with bronchitis?

I'm going soon for in-hospital IVIG treatment, a kind of immunoglobulin cocktail that doesn't fight parvo virus directly, but is believed to generally boost your immune system so that it can stand up to the virus. Because this situation is so rare, it's technically not FDA approved, but has a track record(obviously a short one) of improving the patient's ability to fight the virus. None of this translates into that warm, fuzzy feeling that feels so elusive.

And it takes about a month to see the potential effects of IVIG treatment.
Long term strategic planning...a foundation for victory.

I do my best to explain things lightly and in lay terms to my daughter. She laughs at the overwhelmingly present theme of war.

Outwardly, I laugh with her. I hear myself, boasting like Bugs Bunny, assuring her that I am going to win this war.

Inwardly, I am confident AND nervous. I am grateful AND skeptical. I am eager AND scared.

Spinning

The past couple weeks have been challenging. Real life, non-medical stuff, has been stressful, and I have been feeling an underlying "something's not right" feeling that I've tried to ignore, but haven't been able to shake.

I get routine lab work drawn last week, and they come back with a white blood cell count of 1.8, which roughly translates to "you're a magnet for infections and now have no ability to fight them...Get a neupogen shot NOW." 


Neupogen is a shot I've been given a few times for low WBC count. It stimulates bone marrow to quickly produce more white blood cells to raise dangerously low counts up very quickly. For me, this causes intense bone pain for about 2 days following the injection, the kind of pain that Percocet, switching positions, laying down, massage or heat/cold can't do anything to subside. 

I embrace the shot, despite the pending pain, understanding its necessity. I receive the shot on Wednesday, less than 24 hours before boarding a plane for a six hour flight with my kids to visit my father. 

Ugh. Relatively intolerable pain, inability to take recommended pain meds, cramped space on a plane, and an anxious six-year-old with a monitor that doesn't work. It is a very trying day, and I am so grateful when the bone pain diminishes earlier than I expect on Friday morning instead of Friday afternoon.

Feeling a little elated, I check my email and discover an email from my nurse...cold sweat on a sunny California vacation day...she lets me know that my recent labs reveal that I have been diagnosed with another lifelong virus...CMV.

CMV? Huh? I look it up. 50-80% of adults have it, almost all are asymptomatic, most people don't know they've got it, blah, blah, blah....but can be dangerous to people with compromised immune systems. One site refers to CMV as the single most important infection for transplant patients. Another touts:

CMV is an immunomodulatory virus, and its effects on the host include enhanced susceptibility to opportunistic infections and, probably, chronic allograft dysfunction. Another indirect effect is acute and/or chronic allograft injury and dysfunction

I am disappointed, to say the least. More accurately, I am scared and anxious and overwhelmed and angry about the future, the unknown. I feel my paranoia about medical outcomes becoming a way of life, not a temporary detour on my road to liberation.

I can't find much on treatment. I check support groups and understand that transplant patients with CMV feel

• Fatigued...check
• Gastrointestinal issues...check
• Muscle Aches...check
• Fever/night sweats...check

This is all the stuff I've been pushing through. None of it stops me in my tracks, it has been draining on me for a couple weeks. I haven't exercised, I haven't eaten consistently, I haven't felt badly enough to give in, but haven't felt good enough to do anything more than I've had to.

I'll have to wait to talk to my nurse and my doctor. Without their input, I'm spinning my wheels trying to solve a mystery without any clues, like I'm Velma stuck in a Scooby Doo episode that never gets past the first commercial, before Daphne trips over the obvious clue and before Scooby sniffs out the Scooby Snacks. I really want to fast forward to the end where Fred and his ascot reveal everything.

Jump Start

The holidays came and went with no health surprises.

We even went to New York to visit family and see some sights for a few days.

I was lucky to have my dad there, he did ALL of the driving and I did ALL of the sleeping.

Tiredness is my biggest concern of late. It's been three months since my transplant and I'm still exhausted all the time.  I do most regular things, but I just don't have the energy or stamina to make it through the day without a nap (or two). When my kids go to their dad's house, I sleep for almost two full days. And I still have deep-set, tired, sunken eyes each day. I need to catch my breath after walking up a flight of stairs or running to answer the phone.

At my clinic appointment, my lab results are the best they've ever been.  My only issue is that my once ultra-high blood pressure is now ultra-low. No big deal; Dr Wali prescribes a salt-retaining medicine to keep my blood pressure up.

I ask about my overall exhaustion, expecting to hear something like, "All in due time, have patience" or "Everyone recovers differently, take it easy."

Not today. Dr Wali tells me I need to "get off the couch," that I will get stuck if I don't push myself. I'm confused and taken aback. I feel like I'm pushing myself every day. I'm quiet for a while, chewing on his surprising opinion.

He continues and even decides to prescribe me an anti-depressant. Whoa! Color me alarmed. I'm concerned about side effects and taking unnecessary medicine. He tells me my body is physically depressed, needs an energy "jump start" and he believes this might do the trick. I take 15 daily medications already; am I really ready to add another that "might" work?

I leave, still at odds with his conclusion. I drive home, debating with myself over the situation. At the end of my one-and-a-half-hour drive, I am physically, mentally and emotionally spent.

On paper, I am healthy and vibrant. I certainly do not feel this way. And my doctor thinks the difference is disparaging enough to prescribe an anti-depressant. 

I really want to spend the evening resting and researching, but I get a call from a coworker who needs me to cover his evening classes. I immediately "get up of the couch"(not literally, I don't have time to sit down), grab my son and drive a couple of  hours to teach a couple of karate classes.

Just my luck, for the first class, we're working on fitness! I'm a pretty interactive instructor, and I demonstrate and do everything right alongside the kids. I pause between drills to tell parents the benefits of what we're working on. I feel really tired, but I'm aware I can speak without being short of breath.

The second class is much of the same and goes without a hitch. At the end, a couple of moms come by to thank me for the wonderful class. I am, again, surprised. As they talk, I see myself briefly from their perspective; they are impressed and have no idea about my recent history and no clue how my body feels right now. I smile, simultaneously gracious and proud, and wish everyone a good night.   

My muscles(where my muscles used to be) are aching. The walk back to the car feels much longer than the initial walk in. On the way, I relish in the burn of raising my now-very-heavy feet with each step. I refuse my son's pleas to be picked up and make him climb himself into his car seat. I sink into my own seat, drained and limp and proud and excited. My son demands, "Eat! Eat!"

He's right....Eating is a good idea.
 

And so is pushing myself physically, mentally and emotionally.  

I decide right then:

Tonight's experience, not an anti-depressant, 

is the "jump start" I need.

Celebrate the Positive

Laying on the cold basement floor Monday night, unable to sleep, my mind starts to wander. Our power is out, phones are down, no internet, cell phone service not working...we can not communicate with anyone. What if the roads are closed in the morning because of downed trees? We are stocked with food and water, but what if I do need to get to the hospital? Hmmm....

These thoughts entice me to get up twice during the night, walk up a flight of stairs and down a bottle of water each time. Of course, this means I need to take a second trip about 20 minutes later up two flights of stairs to use the restroom. Lucky for me, all this work makes me tired enough to sleep in between.

So, we all made it through the night. By 7 am, I couldn't handle the basement floor anymore and the wind had died down, so I escaped up to my own bed. I slept soundly and gratefully for three more hours.

Hurricane Sandy did not wreck the havoc that was expected in our area, she just upset our routine. I am glad that we escaped the potential danger, and wish the best for everyone who did not. I still have to find a way to get updated on the status of everyone else.

We ate leftovers and non perishables for breakfast and headed to the gym where they had electricity that promised warmth, comfort, and hot showers. When we got there, I decided walking on the treadmill might be a good idea. I didn't push too hard, never went faster than 3.5 mph(not setting any records today). First, I walked a mile, got off the treadmill, drank water and sat down. I could feel the soreness in my legs, but I was ok. Then I walked 3/4 of a mile, same drill: off, water, sit. I can still feel it in my legs, but I'm still ok. I grab a couple of two lb weights and walk another half mile, laughing at myself for feeling the strain of two lb weights in my hands while I walk, but I do feel the difference. Ugh. This time I'm done. I finish off with stretching my back, legs and shoulders. I really feel like I accomplished something today. Yay!

I go to my favorite part of the gym next, the steam room, but only for a few minutes, got to watch out for blood pressure issues. Everything is fine there and I get the hot shower I was so looking forward to. We finish the trip off with a very salty meal at Fuddrucker's, and when we arrive home, the power is back on!

All in all, it's a pretty good day for me, looking forward to more days like this one.

Surprising News

Today I had a follow up appt at the Transplant Clinic. I was pretty sure I was going to get good news all around. It seemed like things are going well...I stopped taking pain meds over the weekend, I stopped taking anti-nausea meds as well, I am eating (a little) more.  I'm tired a lot, but this feels normal.

When I walk in to get my blood drawn, a lab tech(who is not drawing my blood but looks concerned) comes over and asks me quite deliberately, "Michelle, are you feeling ok today?" I tell her I'm good, and she smiles halfheartedly and walks away. This is the first time my arm has really felt like a pin cushion.  There's been a lot of blood drawn and IV's in my arms in my lifetime.




When my nurse calls me in, I stand up and get dizzy.  She asks how long this has been happening and I let her know it's been happening every time I stand up since yesterday. I just thought it was my blood pressure dropping when I stood up. "This is concerning." She frowns. "Hold my arm and I'll take you to the exam room." 

She asks more questions about eating and drinking and sleeping and activity. And then she looks at my weight. Ugh. I have lost 30 lbs since I left the hospital. To be fair, however, I gained 15 lbs of water weight post surgery. She is alarmed that I lost over 13 lbs in the last week. She looks over more stuff and tells me I am symptomatic for being dehydrated again. Before the doctor comes in, she warns me that I might end up staying at the hospital for a couple of bags of IV fluid.  I am unimpressed but keep my mouth shut.

Dr Piper comes in, listens to the details, examines me.  Yay! All my staples are taken out and my incision is healing beautifully. My medications can stay as is(except removing the pain med and anti-nausea meds that are no longer necessary). My creatinine(measures the level of toxins in the blood) is 1.5!! A healthy person with one kidney should be below 1.8.  Yay! I am a healthy person with one kidney!

But I am supposed to have more energy than I have; I am supposed to be feeling better. "I didn't know I was feeling bad," I respond.

"So," he says. "You need to get hydrated." I brace myself, and then he explains his approach to get this done. First, I need to eat more, like all day long in small amounts; I am to be a grazer. Second, I should supplement my grazing with Boost or Ensure. (Did you know there's 260 calories in each bottle?) Third, drink more, easy enough. Fourth, start putting salt on everything!

He told me the extra salt would retain the water I drink in my system because right now my kidney is in super efficient mode and it's getting rid of all the water I do drink. He recommends Big Macs and fries, potato chips and pickles, tomato juice and canned soup...all of the things I am trained to stay away from. He suggests adding salt to all my food.  My taste buds are going to be so confused….

But, I get to leave :)

We stopped at McDonalds on the way home. I wasn't sure what my stomach could take, so I played it safe and had a kids meal.  Smiling as I started to eat, I tried to enjoy the liberating meal. It was good at first, but way too much for my tender stomach by the end. 

So I'm trying to graze, tomorrow I'll go get some Boost, and work on adding salt and making frequent trips for fast food. It could be worse....