Saturday, October 22, 2016

So, This Thing Happened...And Then That...And That...

I really want to journal all of this in one place for several reasons. One, to update everyone on what happened so the facts are straight. Two, to keep inaccurate rumors from spreading. And three, so that there is a timeline of events to reference later.

Around September 13, I began to notice some pain and general aching in my left hip. The pain quickly spread down my leg, and I began to notice some swelling in my leg. By the time I got to the doctor's office Friday morning, the pain was so bad I would have happily sawed my leg off to stop it. My leg hurt to walk on it, to stand on it, anything. Bryan had to put me in one of their wheelchairs and wheel me into the office. My doctor (who is a nurse practitioner) took one look at my leg and said, "I'm pretty sure you have a blood clot, and you need to go straight to the ER. I'll call them and let them know you're coming."

Mind you, we'd done a little online research and only one leg swelling was a fair indication of a blood clot. But it was still the worst thing we could have heard in that moment. And it was the only thing on our minds in that quiet 30 minute trip to the ER. Naturally, I was admitted to the hospital. Friday, September 16. See how quickly that happened? The clot had been forming for some time, but from the moment my symptoms showed up to the moment they became unbearable was a matter of days. Hours that you can count.

In the hospital the doctors were focused on getting me on blood thinners so they could work on breaking up the clot, which is actually kind of misleading. The clot doesn't really break up. What happens is the body reabsorbs the clot, but the blood thinners prevent the clot from getting bigger in the meantime. So I was getting shots and pills to help keep the clot from getting bigger because the ultrasound they did when I arrived showed a clot that went from the back of my knee all the way to my groin.

Did you get that? The ENTIRE LENGTH OF MY THIGH. Have you ever measured your thigh? Mine is 23 inches long, for perspective. The doctors called that a "significant" blood clot. Pretty, right?

They kept me until Monday, September 19, until the internal medicine doctor who admitted me went off duty and his partner took over my case. The first doctor told me I could go home when I felt ready. The second doctor was like, "Okay, time to go home." I didn't feel ready, to be honest, but he's the doctor. And I was bored. I'd rather be home. I didn't feel well, but he's the doctor.

So I went home that afternoon, collapsed on the couch. Later, dragged myself to bed, slept very badly, woke up several times, got up several times. I was in so much pain because he'd discharged me with no pain meds, even though they'd given me pain meds in the hospital. In the early hours of the morning, as I lay there hurting and feeling awful, I knew all I had to do was tell Bryan I wanted to go back and he'd take me back. But was it the right thing to do? Or was I being a baby?

Then I remembered something my son told me. Shortly before I'd ended up in the hospital, Daniel's Bio-med class had a lesson on blood clots and DVT (deep vein thrombosis--my diagnosis). Armed with what he'd learned in that class, Daniel had come to me in the hospital and told me not to make light of my pain. To tell the doctors and nurses when I'm hurting. To be honest and not gloss over it.  He'd been very sincere and a tad emotional about it.

So I told Bryan I needed to go back to the ER. We made the drive back to Duncan because that's where I'd stayed and they had all the records and info. I gave them all my symptoms, they ran a bunch of tests including blood tests and guess what? I was severely anemic. They gave me 2 units of blood that day, and one more the next day. They admitted me back into the hospital (this was Sept 20 if you remember, I'd only been out of the hospital for less than a day) and ran a bunch of tests to try and find out why I was anemic. Turns out I had a bunch of blood pooled in my abdomen.

I have a DVT, and the doctors put me on blood thinners aggressively. Then we find out I'm bleeding internally. Well, that's a bit of a problem. If we dial back on the blood thinners to try and find the source of the bleed, then we risk complications from the clot--like part of it breaking loose and going to my lungs, heart, or brain. But we can't just let me bleed. Solution: Insert a filter that will prevent clots from escaping so we can go off blood thinners and try to find the source of the bleed.

That was a strange operation. They didn't really put me under, I was sort of in and out and could hear them talking while they operated, but I wasn't really conscious. Afterward, with filter in place, they took me off the blood thinners and went about trying to find out where I was bleeding from.

They never did find the source of the bleed. In the mean time, my leg (remember that swelling) kept getting bigger and heavier. It was hard to get around on it, the dang thing was like a tree trunk. I struggled to get out of bed, to go to the bathroom, to shower, to do whatever. The bleeding stopped on its own, the blood was reabsorbed by my body. They started me back on different blood thinners to try and get my clots back under control, but by then the concern was that I was facing lifelong complications.

Without surgery, I was looking at a lifetime of wheelchairs, walkers, canes, swelling, and pain. What I was feeling in the hospital was what I would experience the rest of my life. With surgery, I had a chance of resuming essentially a normal life. Though surgery was not without risk. After much thought, prayer, and consideration, we opted for the surgery.

On September 27, I was transported by ambulance to Integris Baptist Medical Center in OKC to undergo a procedure the doctor in Duncan had discussed with me and Bryan. It involved pumping me full of a lot of blood thinners in an effort to aggressively break up the clot. The risk was that for a period of time I would be very susceptible to bleeding after the procedure. The prepped me for the procedure while Bryan drove up, and then he met with the Dr who would perform the surgery. It was Bryan who mentioned that I'd previously had internal bleeding. Dr froze. "What?!"

Game changer. Bryan asked him later how close we were to losing me. "Very close."

At first they were just going to shut everything down and just send me back to Duncan, but then this surgeon, Dr Neel, consulted a cardiac surgeon, and came up with an alternate procedure. On Sept 29 they performed surgery to remove the blood clots in my leg that did not drastically endanger my life. Everything went smoothly, and I was in recovery before you knew it. I did spend some time in the ICU, but not a lot. I was really in and out during that time, mostly sleepy, so I don't remember much.

Dr Neel was super impressed with how well I recovered from the surgery, and sent me home Monday, Oct 3. He'd wanted to send me home Sunday, but I wasn't ready. I felt much more prepared Monday. At least I'd learned enough to speak up for myself that time.

The week I was home I got to see my sister in law, my brother in law, my stepdaughter, and my new granddaughter. Unfortunately, Wednesday Oct 5 I began to notice some tightness in my chest and difficulty drawing a deep breath. Hoping it was just due to the surgery and that I needed to just work my lungs a little more, I tried to ignore it. Stupid, I know.

The breathing issues only got worse. For those first couple of days I didn't tell anyone. I didn't want it to be anything serious. I'd spent so much time in the hospital. I'd already almost died twice. But it got painful. To breath. To move. To recline in certain positions. The more I walked the more it hurt to breathe. I'd have to cough. I fought to make it through the weekend so I wouldn't have to go to the ER. I figured I'd go in to see my doctor instead. So Monday, October 10 we made an appt and that afternoon I went to see my Dr. Except she was on vacation so I saw another practioner in the office. She looked at my history, listened to my symptoms, and said go to the ER.

On our way out I told Bryan I'd throw a royal tantrum if I wasn't so certain it would hurt really really bad.

So we went to the ER. The doctor there ordered some blood work and a CT scan of my chest. Throughout this ordeal, I've noticed a few things. One, I try to go to my doctor and end up in the ER. Two, while in the hospital I get taken for a CT scan or ultrasound and the tech performing the test treats me like breakable china after the test is over. Even though they aren't allowed to give me the results, it's pretty clear they've seen something bad. This happened that time too. The tech wheeled me back to my ER room and asked me if I needed to go to the bathroom and I said yes. First she said she'd take me over there and asked if I could make my way back to the room on my own, then said that no, she'd just ask them to bring in a potty so I wouldn't have to leave the room. Then suddenly the nurse comes in with a catheter set up. I'm like, people, all I need is 2 minutes with a toilet.

Suddenly I get 2 doctors and a nurse all with grave faces. I have "significant" fluid buildup in my chest. (significant, there's that word again) They can treat me here in Duncan, but they all agree that since I was just up in OKC and that's where all my surgical records are and everything that it would be best that I go back up there. They're making sense so I agree.

Next thing I hear Med-evac is on their way to pick me up. What? The HELICOPTER??

I had to ask Bryan because this happened very fast. I was never given an explanation about why they thought it was necessary to fly me out of there on a helicopter instead of driving me up via ambulance. I'd barely adjusted to the fact that I was going back to Integris Baptist when the crew showed up, strapped me into the tiny gurney burrito thingy, and loaded me into the bird.

Bryan told me he was told that the helicopter would be a smoother ride for me. At that time, the doctors weren't entirely sure what had caused the fluid in my chest and didn't want to risk more complications or issues by a rough ambulance ride.

Meanwhile I'm taking a nice, sunset helicopter ride to OKC.

I spent a lot of lonely, uncomfortable hours in the ER at Integris Baptist waiting for Bryan, and then waiting to be roomed. We did finally get to a room around 3 or 4 am. At least they were able to give me something for the pain and discomfort, but the bed I was in was really uncomfortable. Bryan was super sweet, though. When my mom came up to relieve him and he went home, he asked the staff to get me a better bed. And they did. That helped a ton.

This visit I did see Dr Neel, but only briefly. He had no expertise over my particular issue this time, but he was able to remove my stitches from my surgery--and give me a little hard time about being back in the hospital so soon. Because my issue was with my chest I got a pulmonologist, Dr Parker, and of course an attending physician, Dr Carter.

I got to have more tests run, yay, but the big issue this time was my INR. When you're on blood thinners, your INR needs to be at a theraputic level of between 2 and 3, so 2.5 is pretty good. But when you have an issue develop that requires a procedure being done, doctors might decide that's too high. They don't want you to develop complications like excessive bleeding. So your INR needs to come down. First they stop your blood thinning medication. Then, as long as it's safe to do so, they wait.

And wait. And wait. I was admitted on Monday, if you recall. Very late on Monday, but still. Even if you call it early Tuesday, that's not much difference. They didn't drain the fluid from my chest until Saturday, when my INR was low enough to safely proceed. They took 1.5 liters (1500 milliliters), which the person performing the procedure informed me was the max amount he was allowed to remove. He left a little in there. Usually the body reabsorbs it. Hopefully, right?

This hospital stay was different. I felt mostly okay. They had medicine to help control my pain, I knew I had to walk a bit to help heal my leg from the surgery, so I hated being restricted to the bed. But I was on bed rest with bathroom privileges. I had to request to have the cath removed. And after they removed the fluid from my chest I didn't feel much different. A little, but they'd just stuck a needle (and tube) into my chest so my chest was still sore.

I didn't go home Saturday. Or Sunday. Or Monday. Tuesday wasn't looking good, either, but then in the afternoon my attending came in and asked me if I wanted to go home. Sure! So Bryan drove up to OKC and took me and my mom home.

So I'm home. I've seen my new doctor (my primary care felt I needed more care than she could give, and offered to transfer me to the internal medicine doctor in their office). My lungs still sound good. I see the pulmonologist on Nov 3. I'm missing our family vacation right now, but those are the breaks, right?

There's still a chance that the fluid could build up again. They're still running tests to try and figure out where it came from and what caused it. Thankfully it wasn't blood. So far all of the tests have come back negative, but there are still cultures growing that can take weeks to pan out.

My doctor is referring me to a blood specialist to try and figure out why I got the blood clots to begin with, so we're nowhere near the end of this. Hopefully, though, with some diligence and effort, we can keep me from hanging out in the hospital anymore.

1 comment:

Annette said...

Whoa! You couldn't put that all in a novel because it would seem unrealistic! No wonder you wanted to chronicle it all. Here's hoping you heal up soon and have no more "excitement"!