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.

Dehydration Decisions & Hurricane Sandy - Oct 29, 2012

So I have been feeling exhausted all week. It's kind of discouraging, but I am trying to be patient. I had an appointment with the Transplant Clinic today, and with Hurricane  Sandy coming in and everything being closed, I believed I wouldn't be expected to come. However, because I wasn't doing great last week, they told me I needed to go in. 

The drive in was rough, not a lot of cars on the road, but visibility was limited. As the rain got stronger, I really started to have doubts that this one-and-a-half-hour trip(well, at least 2 hours in this weather) was a good idea. Eventually, we made it safely and waited the routine hour and a half past my appointment time to be seen. Each minute that passed was a little more stressful, being unsure of the conditions outside. 

When my nurse finally called me in, of course I got dizzy as I stood up. She was not impressed. We talked about eating, drinking, and urinating. Input and output numbers. Both of mine are improved since last visit, but I am still overwhelmingly exhausted and visibly dehydrated according to both doctors. They evaluated my blood pressure history and it's been consistently too low. This should feel like great news as I have suffered from chronic high blood pressure for more than ten years. Since transplant, I don't take blood pressure meds anymore. But too low blood pressure causes dizziness and fainting and is just generally not fun. 

Dr Jackson tells me my Hemoglobin and Hematocrit are still low 8.8 / 29.4. My albumin is low. My red blood cell count is low. I'm confused as everyone has always said my labs looked great. Now I understand...they are steadily improving and great for a person with a recent kidney pancreas transplant who feels exhausted all the time, not great for a healthy person.... Dr Wali wants me to stay and get hydrated via IV. And get a dose of Epo while in the hospital "It should only take 2 hours," he suggests. But this is doctor time, not real people time. 2 hours doctor time typically translates into 4 hours real people time. In 4 hours, I will be stuck at the hospital indefinitely because the storm with be in full swing. 

Dr Jackson, my nurse Linda and I point out reasons for me to go home now.  

• "Her numbers are the best they've ever been." 

• "She's been eating much more, yesterday was her best day of eating." 

• "If I stay now, I'll be stuck here for at least a day." 

Dr Wali eventually compromises by sending me home today, with a shot of Epo right now, a prescription for magnesium, and a prescription for a salt-inducing hormone as my body is clearly not retaining the water I drink. He tells me to get to a lab immediately once the roads are safe post storm and we'll decide based on those results if I need to get IV treatment or not. 

My nurse loads me up on apple juice and waters before I go and we get on the road ASAP. She calls in the prescriptions to speed up our trip, but when we get to the pharmacy they are not ready yet. I take advantage and get some Arby's(lots of salt couldn't hurt). The roads were getting worse and it took a long time, but we eventually made it home safely. I am grateful. 

It's a few hours later now, and our power is out. I'm getting cold. Everyone else is setting up the basement where we can sleep without fear of wind and windows (or flooding-it's a walk out). I've been drinking, but I still feel dehydrated. Sleeping on a cold basement floor can not be any more comfortable than sleeping in my own bed, where i already spend restless and uncomfortable nights. Starting to wonder if leaving the hospital was the best choice. We'll see how tonight goes.

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....

Round 2 at the Hospital (Oct 12, 2012)

Ugh. I don't want to go back, but I am grateful that they took my situation seriously. I wasn't going to the ER and wait until they could see me, they were having me re-admitted. When I arrived, there was, of course, no sense of urgency, but I was tired, not feeling well and just glad to be able to lay down....At first. 

I walked into my room and laid down at 6:30pm. A nurse greeted me and told me her shift was ending and I'd see the new nurse shortly. My dad had driven me, and he needed to get some dinner, so he excused himself and was gone for maybe 45 mins. While he was gone, no one came.

When he returned, he told me the nurse said I was staying until tomorrow. This was news to me. My nurse had told me I was to go get rehydrated/IV fluids and return home. I'm confused and he's tired, so he goes home and tells me he'll see me in the morning.  

Now it's 7:15 and I have to throw up. I painfully rush(this is probably hilarious to watch) to the bathroom, but it's just the omni-present unproductive stomach lurching that hurts so bad. I walk to the nurse's station and ask for a basin. The nurse let's me know that I need to be back in bed because I am dehydrated and I could be dizzy. As grateful as I am for her concern, I need the basin AND I point out to her that I have now been dehydrated in a hospital bed for an hour and no one has hooked up an IV to help me. She tells me they are working on it and to go lay down. 

So now I am sick and frustrated. At 7:45, a tech comes in and takes my vital signs. I ask him about putting in my IV. He says he's here to take vital signs, but he let the nurse know I asked. The nurse comes in. I ask her if she's going to put in my IV, she looks at me like she doesn't understand. I ask again, she says yes. Hallelujah. When? She tells me the tech is going to do it. Aaaargh!

Ultimately, the tech actually inserts the IV at 8:05, an hour and a half after I arrived to be treated for dehydration. Angry and frustrated and glad to be receiving liquids, I try to rest.

I don't really remember that night. At some point, they gave me anti-nausea meds and my stomach calmed down. I slept. I did not get up and walk. I was only bothered a few times during the night by a tech coming to test blood sugar and draw blood at 5am.

Home…briefly Oct 12, 2012

So, at home, sleeping(trying to sleep) in my bed is much better than the hospital. I can turn off ALL the lights and don't have to worry about a lab tech or friendly nurse or X-ray tech or inquisitive med student dropping by every couple of hours. I am also able to get up and walk without dragging the IV pole around. Ah, simple pleasures....

There's still plenty of pain. I take pain medication pretty religiously because my body lets me know if I missed it...I don't have to rely on a clock to know when it's been more than 4 hours. 

My incision starts bleeding, more than I would expect. It soaks through my shirt and pants. It doesn't hurt more, but it is alarming. With nurse's direction, I apply a dressing and realize I'm a lot more gentle than any of the techs, nurse, and especially doctors were. 

I do a lot of walking up and down the stairs. When I can't sleep, this gets me tired enough to fall asleep. I use a heating pad on my back which is especially helpful. I still can't really eat very much, and I am especially nauseated. In the first 2 days at home, in total I ate about 2 servings of soup and drank some water, all of it was forced. And I threw up most of it. By the second day, I couldn't hold down sips of water. I called the nurse. She told me I needed to return to the hospital; I was dehydrated.