My Two Favorite Dorks

My Two Favorite Dorks

Sunday, February 18, 2018

Part IV: The Scare and The Dénouement (Resolution)

If you're just seeing this, I encourage you to start with Part I. Also, here's a link to a short video I made while in house.

Toward the end of the second night with my angelic nurse, I finally got a few hours of GOOD sleep. I can't tell you how amazing this was! My nurse and I had made an earnest attempt to line up all my bedtime medications to preempt pain, nausea and fever, but it was the ear plugs and sleeping mask she dug up for me - plus a good dose of sleeping medicine - that really did the trick.

The next morning I was temporarily elated by my few hours of good sleep. My fever was low-grade. While some of my symptoms were being better controlled with meds, I had a couple of new issues: The bruise from the insertion of my Hickman Catheter and that whole general area hurt, and  shook every time I coughed; Also, the IV antibiotics were "working their magic" on my bowels. Having killed all my good intestinal bacteria, everything was liquidized. I can't tell you how much fun that is when you are forced to capture all of your urine into a "pee hat" - which covers up a huge portion of the front of the toilet - when you go to the restroom. On top of that, I had started my period. It was a hot mess.

After a few hours of energy, I spent the rest of the day feeling hot and grumpy. I did manage a walk when Todd came to visit, and I did a bunch of stretches and light core exercises in an attempt to help my back. I tried not sitting in bed as much. Overall, I was feeling pretty bad but stable.

As bedtime drew nearer, I tried coordinating all my night time meds with my nurse as I'd done the night before. I was armed with my sleeping mask and ear plugs (unfortunately, I found that most people who come into your room when you're sleeping like this still just start talking to you as if you were sitting there awake, only slower and more articulated: "Miss Smiiiith, I'm here to draw your blood.") There is no peace in the hospital.

Anyway, I kind of tanked that night. My bedtime meds never seemed to get ahead of my fever or my pain. I was waking up every couple of hours from fever hotness, pain, and having to go to the bathroom. I also had a lot of interruptions - from the nurse (he did his best), the nurse assistant (blood sugars at 3am every night!) and, in the morning, the EKG technician and phlebotomist.

This turned out to be a good indication of what was to come that morning. Having gotten wind of my rough night, and concerned about the worsening fevers, the doctors ordered a barrage of tests. In addition to my morning labs and EKG, I had the pleasure of getting more blood cultures drawn, and urine and sputum were requested. They also ordered a CT scan.

The Scary Day

The doctors came to my room early on that morning. This was the day that things got scary for me. First of all, an xray I had had done the day before sadly showed no improvement in the pneumonia. Though no worsening either. Furthermore, they were concerned about some thickening of my plural lining and thought that it might be fluid that would need to be drained with a chest tube. Lastly, they thought they might be able to see some damage to my lung tissue. (Yikes, yikes, and more yikes!!) A more detailed CT scan of my lungs was ordered to answer these questions.

The doctor was also worried about my worsening fevers from the night before, which could be part of the process of the pneumonia clearing up or could be a sign that infection not being treated adequately. "You have a very good pneumonia," he said, which took me aback as I ran through the many definitions of "good." He emphasized that this infection would be a slow one to get over, that I might be recovering for up to a month.

Fortunately, the antibiotic cultures from my bronch had also come back, and it was determined to switch me onto another IV antibiotic which would better target the type of staph I had growing.

With my new lab tests cooking and the new antibiotic in me, I spent the day nervously optimistic about what might happen next. I got in for the CT scan early and Todd and I killed time all afternoon waiting for the results. I finally decided to read up on chest tubes, which is something I know very little about in this situation. I did know that the experience was supposed to be a pretty unpleasant one.


Later that afternoon, the resident doctor came in to tell us the results of the CT scan. The fluid in my plural lining was not enough to drain. Also, the location was bad for getting a chest tube in (right behind my shoulder blade.) (Yay!) The areas the doctor had seen that might be damaged lung tissue in fact were not (Super yay!!) She again emphasized the long, slow recovery ahead, but commended my efforts at activity thus far (I had run into her on a Starbucks run the day before.) "You have a good pneumonia," she said. "It would set anyone back."

I know Todd and I both slept better that night with our worst fears subsided. And I also felt good about going forward with the switch to the new antibiotic.

I had no fevers overnight, and none the next morning. I still felt a bit weak from the past days, like I needed a lot of rest. But I was better than I had been. When the doctors came around, they asked me if I felt ready to go home. I had mixed feelings, but they seemed to think I was on the right track and could leave. I decided to trust their judgment. So, home I went!


It has been a slow recovery, but nothing I'm not accustomed to from years of cystic fibrosis exacerbations. It does suck though, being back to that place, that sick place. So sick you are useless some days and need a lot of help (thanks, friends!!)

I will be on IV antibiotics for a total of four weeks. I return to the doctor about a week later for a recheck. The docs want to do another broncoscopy to ensure that the infection I had hasn't caused an episode of rejection, which often happens. Wish me luck with that. In the mean time, I'll be doing nothing.

Part III: Night Sweats

If you're just tuning in, check out Part I and Part II before reading this.

After 17 hours in the ED, at around 8:30pm, I finally got assigned a room on the transplant floor, 7800.

By morning on Feb 1st, I was actually feeling a bit better after fluids and my first doses of antibiotics and Tamiflu in the ED. I had a fever that morning but then it let up for most of the rest of the day. I was still having intermittent nausea but they give me meds to help with that. I still had a fever. The pain in my lung is a little better, but I feel like I'm wheezing and have a productive cough. Back pain is still an issue.

I'm anxious to hear about any results from my bronch when the doctor rounds. Fortunately there isn't much to report. The bronch went smoothly and there wasn't much remarkable to see. My right bronchus has a narrowing in it - this is just the way this pair of lungs came to me - and the pneumonia has settled in my middle lobe comfortably underneath that. It's also infiltrated the plural lining of my lungs though we don't know the extent. We will have to wait a few days to get back any results from the bronch.

In the meantime, my original sputum sample has come back with an overgrowth of staph. With that information, we continue on with the antibiotics I was already on. I spend the first part of the day sleeping on and off. I wasn't hungry but forced myself to eat at each meal - protein, if possible, and fruits and vegetables. (My first tray contained an honest-to-god unidentifiable meat source that I forced myself to eat, along with green beans and potatoes.) 

Todd came to visit in the afternoon and I changed from PJs to pants and walked down to Starbucks and the cafeteria for coffee and a snack. I didn't realize it at the time, but these heroics of making myself walk and eat were the result of something inside of me that saw dormancy as the enemy: A belief that to be still, to become passive, to do nothing would lead only to the ground floor, not the exit door.

That night, I again did not sleep well. My fever came on in the evening and worsened over night. My back hurts up and down, not just the usual low back pain, and is not at all helped by the amount of time I'm spending in bed. Along with my head hurting, my neck was sore and my lung pain bothered me more and less - worse when I slept on my right side or when I coughed a lot. Or when I haven't been coughing and then I need to, as when I first wake up.

In addition to fevered sleep, pain, and overall feeling awfulness that first night in my room, I also had an episode of phantom itching on my upper chest. This is old transplant nerve pain that happens from time to time. I was a sweaty mess, tossing and turning in pain trying to get comfortable and on top of that my chest was itching almost to the point of making me insane.

When the itching happens at home, I have a pill that I take. But since this happened in the middle of the night at the hospital and the once-in-a-while medicine I use was not on my med list, all the night doctor was willing to do was prescribe me strong hydro-cortisone ointment - showing a complete lack of understanding about the cause of the issue - which the nurse then spread on generously. It didn't do a bit of good as a medicine, but it was so gross and goopy that it did eventually get me to stop physically itching, which did probably help.

The night nurse I had my second night, and then again my third, was an angel. Never before have I rang my call bell so many times during the night with so many continuing and new problems. Is it time for this? Can I have some of THAT?? She brought me heat for my back when the pain meds weren't working, cool packs for my head when my fever was raging, she paged the docs to see what more we could do when options seemed exhausted. I've never had a more caring, sympathetic nurse willing to keep trying things to help. She was amazing and I made sure every body knew it.

On my second full day in the hospital, I had a Hickman line placed. A Hickman is a type of central catheter similar to a PICC line except that instead of being placed in the arm, it is placed in a large vein near the heart. This was my first time having a Hickman, which overall seems to carry fewer risks and restrictions than a PICC line. (Actually, they are kind of amazing and I've become a big fan.) The Hickman was placed in preparation for going home on IVs. It was Friday and I'd hoped that I would be able to go home sometime that weekend.

But Saturday and Sunday had other plans in store for me.

At home -and feeling better - with my Hickman Catheter

Wednesday, February 14, 2018

Part II: Middle-of-Night Trip to ED

Missed Part I? Read it here.

I woke up at 2 am with a pain in my right lung: I could feel it when I breathed in. Prior to transplant, this would not have been a big deal - I had all kinds of lung pain, mostly the result of infections or small blockages in my airways.

But these were my new lungs, and this, therefore, was something different. I hardly hesitated before waking up Todd. I packed a bag (one for a long wait and another of overnight hospital essentials) while Todd tried his best to wake up mid-sleep, and we arrived at the Duke Emergency Department about 3 am.

I checked in and was lucky to be called back into triage quickly - lord only knows what kind of microscopic organisms I escaped crawling around the front waiting room. We were taken back to room #42, my private ER room.

It didn't take long for things to get rolling...the dreaded blood cultures (4 sample liquor bottle-size containers of blood, necessarily drawn twice from two different needle sticks); another flu swab and a more comprehensive viral panel, looking for a short list of the most commonly harmful viruses; more labs, an xray, urine sample and an EKG. I felt I could cough up a sputum sample and along with the mucus I coughed up was blood! Another scary thing to happen with these new lungs, though not at all uncommon for me before transplant. This was when the flashbacks of "living life with end stage lung disease" really began.

I had a throbbing headache, my back hurt, my BODY hurt. I felt nauseous and got sick to my stomach. The nurses, techs and doctors came in and out; I made them shut out the lights and grabbed naps in between. Fortunately the docs gave me Tramadol and Soma for my aches. It was a small victory considering how difficult it is to get docs to prescribe pain meds. Nothing touched my headache, though. It went from the throbbing/light sensitive type to a general ache and finally to a more mild pain with an uncomfortable head rush when I stood up over those first few days.

Sometime before the 7am shift change, we knew I would be admitted. By that time, my xray had come back with a sizable pneumonia in my right, middle lobe - right where my pain was - some of my labs were wacky and obviously I looked and felt like shit. The doctor suspected a viral component (or instigation) to my illness and wanted to keep an eye on that though nothing ever showed up on the viral panel. I had already been started on a couple of broad-spectrum IV antibiotics to cover whatever might be growing in my lungs.

One early thought the team had was that I might have a pulmonary embolism, which would explain the pain and the blood. Since I have had a blood clot before, I am technically more likely to develop another one (a PE is a blood clot that's in your lungs.) But before they could get too far with that, my kidney function labs came back elevated and they didn't want to add stress  by giving me a CT scan with contrast dye to confirm that. Instead, they ran a blood test which showed them it was unlikely to have happened.

The team also wanted to do a bronchoscopy ASAP. As tired and worn out as Todd was, half-sleeping through the early morning sitting upright in the chair next to the wall in my room (and as much as he wanted/needed to get home to feed the dogs breakfast and let them out), I wanted him to stay for the bronch. I was nervous about what it might show. And who knows, maybe I would even get taken up to the floor after my bronch (my earliest teases at getting a room) and Todd could go home knowing I was situated for the time being?

I had the bronch around noon. Coincidentally it was also done by the ED doctor I had seen. It was not a typical bronch, which checks for infection as well as rejection by taking lung biopsies. This was a "wash out" bronch in which saline was sprayed into my lower lobes, sucked out and then analyzed for goodies.

Turned out the goodies were neither of the usual suspects, Pseudomonas or burkoldaria - both harmful, resistant bacteria that I carried in my old lungs and which have managed to stick around (so far harmlessly) in my new lungs. It was plain old staph! This was good, it meant that there were lots of antibiotic options to treat it, unlike my super antibiotic-resistant old bacteria.

It wasn't until 8:30 pm - long past many promises of rooms and another shift change - that I finally got into a regular room on the 7800 transplant floor.

Stay tuned for my early adventures on 7800.

Tuesday, February 13, 2018

Going Viral

I spent a week in the hospital a couple of weeks ago. I have long known the fragility of health after transplant, but there's nothing like a good wake-up call to remind you of how far you've come.

There are a number of triggers that can cause health problems after a lung transplant. Viruses, bacteria, fungi and rejection are all possible threats that we patients can't do much to control.

Backing up a bit: I'd been on high alert for lung symptoms ever since we discovered that we had mold in our HVAC system at the end of January. I'd felt some junk rattling around in my lungs around that time. Not exactly sick but not fully well, either. But I was also doing "couch to 5k" with no problems, so I wasn't super worried. At my 3-month clinic appointment on Jan. 24, my lung functions were a bit down but everything else seemed alright, including blood work, breathing sounds and x-ray. I attributed the decrease in the cold, dry weather we'd been having.

Fast forward five days to Monday, Jan 29. I was dragging all morning, feeling oddly tired - so much so that I decided to skip my yoga class that morning. I was lazy for the rest of the day, but it wasn't until Tuesday when I woke up that I began to suspect I may be coming down with something. I had that awful "I might be getting sick!" feeling, so I took it easy. But I wasn't running a fever or anything.

I called my coordinator that afternoon because I knew how rampant the flu bug has been. She suggested I go get checked for the flu at an after-hours clinic and plan to touch base in the morning. I'd go into transplant clinic then if my symptoms were worse. By the time I left for the swab at 5:30pm, I wasn't even feeling well enough to drive myself.

The PA at the minute clinic was sure I was going to test positive for flu - the first in a line of folks, it would turn out - but she was wrong. I was negative. The pharmacy filled a script for Tamiflu to have on hand just in case.

All afternoon things had escalated and by 8:00 or 9:00 I went to bed early. I'd been battling a fever, but it stayed below 101 for the most part. I slept the restless, delirious sleep of fever, waking up every few hours for water, Tylenol and bathroom breaks. I was sore in the total-body way, and was waking myself up intermittently coughing, too.

I finally had a couple of hours of restful sleep, but then I woke at 2:00am. Something wasn't right.

Stay tuned for part II, trip to the ED.

Sunday, January 14, 2018

Patient Formerly Known As Disabled

In October, I celebrated my three year double lung transplant anniversary. I found out also around that time that my disability was being reviewed by the federal government. It is my understanding that it's now standard for all patients to have three years after transplant to remain disabled before review.

I completed all of the paperwork and sent it in in early December and have since been waiting to hear the decision. I thought I was a shoe-in. While my lungs have been healthy, I still have pulmonary appointments every three months to keep tabs on things and receive a monthly antibiotic nebulizer treatment at the Infusion Clinic. I also continue to have the same side effects from my anti-rejection medication that have plagued me for the past three years: memory and concentration issues, fatigue, etc. The anti-rejection med Prograf has given me high blood pressure (requiring two medications to treat) as well as slowly landed me into stage IV kidney disease (diabetes is also to thank for that.) I now see a kidney doctor every three months as well and hope to keep my kidneys working as long as possible before a kidney transplant would be needed. I also have the beginnings of diabetic retinopothy in my eyes due mostly to the high blood pressure and kidney disease.

Most of my health flare-ups over the last year, however, have been sinus related. My chronic sinusitis has been worse since transplant. I do twice daily rinses with saline, steroid and antibiotic. I see the doctor every three months. Even so, I have averaged a flare requiring antibiotics about once every three months. I have been so lucky that oral antibiotics still do the trick for me to treat these. My sinusitis also causes secondary headaches. And of course, my sense of smell is awful.

In addition to the above, I continue to see a dermatologist twice per year - although a couple of things came up this past year requiring more appointments. I see my diabetes doctor every three months. I see my transplant psychiatrist every three months or more.

In short, while I am relatively "healthy," on a day to day basis, I still have a lot of medical issues going on that require treatment and attention.

I received my letter from Social Security on Friday: We have determined that you are healthy enough to return to work, it said. But instead of panic, what I felt was relief. Let me explain.

Social Security and Medicare, while a gift to the people who need it most, is a pain in the ass.

Until Dec. 31, 2017, I was still on COBRA insurance, but Medicare had automatically become my primary insurance when I became officially "disabled" in 2014. Medicare makes everything so freakin' difficult. Yes, most things did get paid for eventually, but the amount of trouble it took to satisfy their requirements was maddening.

One example is with the continuous glucose meter that I wear for my diabetes. In order to get approved for Medicare to pay for my supplies, I had to start seeing my diabetes doctor twice as often, both my doctor and I had to fill out a bunch of paperwork, I had to get a special blood test, I had to (or was supposed to) not only use their sensors but also switch to their glucometer to test my sugars. And I wasn't "allowed" to check my sugar on my cell phone (which syncs with my handheld device - they are always exactly the same so that makes no sense!) because the cell phone version of the program had not been "approved." That's just a taste. Basically, Medicare takes someone who already has a complex medical life and makes it even more complicated.

Additionally, Social Security has dumb going-back-to-work rules. If I were to work at all while on disability, it would potentially raise a flag to be reviewed and kicked off. Legally you cannot make over about $1,100/month to stay on disability. All this is to say that my options while on it were to work an extremely minimal amount, to work a bit more doing something that was well below my earning capability, or to find a part-time job that had insurance, since working that much would potentially cause me to lose my Medicare. If all this is confusing, you're not alone in feeling that way.

But, here's the thing. It's actually the perfect time for this to happen, and from what I can figure, the effects on us should be minimal (assuming that my health stays stable.)
  1. I stopped COBRA on Dec. 31, 2017 and started on Todd's new work insurance on Jan. 1, 2018 (The end to my COBRA was fast-approaching anyway.) While it was previously not a great option to join Todd's work insurance because it was not that good, his company has now been bought by a larger one with pretty good insurance. There's no way to tell for sure how this will play out throughout the year, but our max out-of-pocket is very reasonable and so far our prescriptions have a $0 co-pay this year!
  2. Social Security currently sends me about $500 per month. I receive an additional $700 per month from private disability from Sun Life through my former employer, The Nature Conservancy. However, when I was first approved for long-term disability at TNC, I was awarded $1,200/month. Subsequently, after approval from Social Security, the money Social Security sent me was deducted from what I received privately. Now that I am no longer receiving Social Security, I should once again be getting the full $1,200 per month from Sun Life. So no loss of income.
  3. I actually do feel like I can work some now ( though not full time like the government believes!) Without the financial earning constraints of disability, I can find freelance or other work and not worry about how much I'm making. And I can work as much or little as I feel my health permits without the worry of losing insurance.
This is all good news! To be clear, this does not mean that I will be running out to get a job. I'll save this for another blog post but I have been making some changes in my life and I have a new plan for this year!

So here's to new years, turning over new leafs, and freedom to live without restraints.