Thursday, February 16, 2017

the new normal: life with a blood clot.

Whenever I watch a movie or television show where a character experiences some life-changing event, something that really shakes up their life, I think to myself, "Did they see it coming?" Did they sense anything different in the days or hours or minutes leading up to the seconds that turned their life upside down? Did they sense a change in the wind, a subtle vibration that made their hair rise up and planted a question in their mind?

I don't know about them but for me, I didn't notice a thing. Even up until the very last second, I was completely oblivious and looking back now, it makes me feel like an idiot for not noticing anything at all.

Two weeks ago, on the 22nd of January, I was getting ready to watch the Packers game on television when I got a sharp pain around my belly button. I hadn't eaten anything strange but sometimes I get random pains around my body so I didn't think much of it. As the day progressed, the pain increased and moved up under my ribcage. It was so sharp that it hurt to walk and move around, and I thought maybe I had contracted the stomach flu that was going around. Later in the day, the pain shifted to below my belly button and finally to my right lower quadrant. After having my training in the medical field, I was worried about my appendix, but I didn't have a fever, wasn't vomiting or throwing up, and didn't have any other symptoms, so I brushed it off.

By Tuesday night, the pain hadn't gone away and I was still having difficulty moving around. It hurt with every step, I couldn't bend over, I had to sleep in a completely horizontal position, and sitting on the couch wasn't comfortable no matter how I sat. With much reluctance, I asked my mom to take me to the emergency room.

The doctor wasn't convinced after my physical exam but they sent me to have a CT scan and it came back that I did, in fact, have appendicitis. Around midnight, my surgeon came in and they took me up to the operating room. Luckily, my nurse for the night was one of my great friends that I had worked with when I was still a tech so I felt very at ease and comfortable that night. I distinctly remember that I didn't feel anxious about it at all, something pretty unusual for me. I went into surgery at about 1:30 AM on Wednesday morning. All I recall about waking up was the pain. It was awful. I had a knee arthroscopy when I tore my MCL in high school, and I had a cystoscopy without anesthesia, and I was convinced those were painful. But this pain... It just rips through your whole body. Probably because it's at the core of you, where you use your abdominal muscles for almost every movement you make, but it was excruciating. Thankfully they gave me some painkillers and I drifted off to sleep until the next morning.

When I woke up, I was still pretty uncomfortable. The pain never really went away, no matter how much medicine they gave me, and the first two days were the absolute worst. I woke up starving, having not eaten anything in about 19 hours, only to discover I was on a clear liquid diet! Woohoo! Vegetable broth and hot tea are good, but not exactly satiating when your stomach is grumbling with hunger. 

I spent Wednesday trying not to move, because any tiny movement just sucked the breath out of me. Going to the bathroom seemed like an insurmountable task, one that left me utterly exhausted each time. I forced myself out of bed to walk the length of the hallway that evening and although I walked at a snails pace, I actually felt better afterwards, like I could maybe do this after all.

Waking up Thursday, I felt hopeful. I started on my clear liquid breakfast and the nurse came in to tell me I could have soft foods if I wanted - of course I wanted! They sent up a tray of french toast and oh boy, was it delicious! 

Going to the bathroom was still painful but not as bad, and I could go by myself if I walked slow. When my mom came to visit, I walked the hallway again and I was faster this time. My stomach didn't scream every time I moved my legs, and I was feeling more positive. The doctor came and said I could be discharged, something I was really excited about. I couldn't wait to sleep in my own bed and snuggle with my puppies. 

Riding in the car back home was really, really difficult - every bump hurt so bad! But all I could think about was my nice warm bed and my dogs. Seeing their excited faces was worth them accidentally stepping on my belly, and sleeping on a real mattress that night was bliss.

The next day when I woke up, things didn't seem as great, though. I had this pain in my right calf that felt like the worst Charley Horse, one that wouldn't go away no matter how much I stretched or walked around the house. I also started getting a pins and needles feeling all up and down my leg when I walked on it, and I knew something was wrong. I have a blood disorder where my blood clots too much and although I have taking aspirin every night for over a year, I just had a feeling in the pit of my stomach that something wasn't right. So with a lot of disappointment, we headed back to the emergency room.

Let me tell you, it was a nightmare. When my mom and I got there at 7 pm, after sitting down there were only two free chairs left because it was that busy. People were eating and drinking, listening to music on their phones, watching television on their laptops, you name it. It was insane! While I was waiting, the triage nurse called me in to ask me what was going on and I gave her all of the information including that I thought I might have a blood clot. She was very kind and ordered the doppler test to be done while we were waiting, so a few hours later I was called in for the ultrasound test where they run probes around your leg to check the function and flow in the blood vessels in your legs. I was sent back to the waiting room after that, and around midnight I was finally called back to a room.

I had just gotten undressed and was laying back on the stretcher when I began losing sight in my right eye. It was like tunnel vision, where the parts that you can see are getting smaller and the rest of your vision is just black shimmer. I immediately pushed my call bell and had my mom run out to get someone. When I had my TIA in 2015, that is exactly how it started as well, without any numbness/tingling or pain (like what happens with my migraines), so I was terrified that it was happening again. The nurse from triage came in and I told her what was happening and since she remembered my story from earlier in the evening, she had an idea of what was going on. I feel truly lucky and blessed that she had been assigned my nurse because if it was someone else that I had to explain everything to first, my care would have been delayed and I'm not sure what might have happened. 

After I told her I was losing vision, she explained to me that my doppler was positive - I did have a blood clot in my leg. It appeared as though part of the blood clot had broken off and had traveled to my brain and I was experiencing either a stroke or mini-stroke (another TIA). She activated the stroke protocol overhead, and several people came rushing in to start an IV, hook me up to monitors, run me through a neurological test, and take me to a CT scan. Having your vision start to disappear and not knowing what is going on has to be one of the most horrible feelings in the world. I was so frightened and had no idea what was going on or what was going to happen, if it was going to get worse or if it would ever come back, and I couldn't stop crying. As I was coming out of the CT scan, a neurology resident came to talk to me and when I was looking at him, I started losing vision in my left eye, too. They took me out of there quickly back to the ER, where they gave me a large amount of aspirin and blood thinners (Plavix). Within about forty-five minutes my left eye's vision restored but it took four more hours for my right eye's peripheral vision to be completely restored.

I was admitted to the Telemetry unit where I stayed until Monday, January 30th. An MRI confirmed that I didn't have a full-blown stroke, but another TIA, which is called a mini-stroke. I had carotid scans which were negative for clots and an echocardiogram that confirmed my ASD/PFO is still present in my heart and not any bigger. In the days following my visual problems, I had aching in my eyes and a headache that was pretty bad at times. It made me extremely anxious that I would have another attack, because the aching was so similar to the pre-migraine aches I get. I also experienced speech problems where I would not be able to think of the word I was looking for, skip over words completely, or forget how to spell words when texting. I still have trouble with those things, although they are slowly improving. I was unable to look at my phone or tablet for more than thirty seconds at a time without getting a sharp headache, and I couldn't read a book until a few days ago because my eyes would mix and jumble up the words and my head would hurt.

My leg was in extreme pain after the blood clot - pain that medicine didn't even touch. More than that, I could barely move it or walk. I couldn't flex my ankle more than approximately one inch and it dragged when I walked. The weakness made it hard to lift it off the bed more than a few inches. Now that I have been home for a little bit, I can bend my knee and flex my ankle better but I can only walk very short distances and can't stand still without the pain being overwhelming. I have to wear a compression stocking all the time (except for when sleeping) to try and help dissolve the clot and it makes my leg have a constant strong ache. It has to be elevated at all times and my mom has had to come live with me full-time because I need help dressing, bathing, cooking, and doing simple things around the house. The doctors can't say how much longer it will take to heal and if I will have any lasting deficits. Going from a functioning 29-year-old to this has been humiliating, humbling, and frustrating. A doppler scan this week showed that there has been no change in the blood clot - it hasn't improved or gotten smaller at all. My doctor is at a loss as to why that is, so I am on a doubled dose of blood thinners in hopes to break it up.

I was on a constant heparin drip in the hospital, which was then transferred to Lovenox shots and a daily Coumadin pill once I left - all of which are blood thinners. I will be on them for at least six months to a year, maybe longer. I have to get my blood tested every week to make sure my blood levels are in therapeutic range and safe for my body. 

Living with being on blood thinners isn't something you think about until you're on them, and it changes you perspective considerably. As someone who typically has a somewhat carefree attitude about life, I have to change my actions when the smallest cut could be a literal risk of me bleeding to death. Today I got a nose bleed out of nowhere and it's a shaking thought that a thing as simple as a nosebleed could mean a trip to the emergency room when you're on a blood thinner.

After being so happy about being discharged from the hospital finally, I soon came down with an upper respiratory infection that I had clearly gotten in the hospital. That meant another antibiotic to add to my regimen and unfortunately, a terrible and painful cough that left my chest burning and me unable to take a deep breath. I just got over that this past week when I found out that I now have a yeast infection. It feels like it's just one thing after another and I can't catch a break. It's extraordinarily frustrating and discouraging when I just want to be able to focus on getting better and back to somewhat normal. 

The one thing that has been improving is my appendectomy scars. At first they seemed to be doing well after I uncovered them. Because I had my surgery done laparoscopically, I had three smaller incisions versus a very large one. 

But while I was in the hospital the second time, I noticed that around the edges of the incisions, I was developing blisters. It seems like I am allergic to the glue, Mastisol, that they use to hold the bandages down onto the wounds with. 

The nurses and I kept trimming the bandages away from the blisters and ensuing rash, but eventually the wound became completely uncovered. At that point I started applying Triple Antibiotic Ointment and clean gauze bandages with paper tape twice a day, and now the two small incisions are completely healed and the center wound is dried up with a scab and is healing well. 

Those scars combined with the bruises from giving myself Lovenox shots twice daily have left me with a stunning stomach.. Let's just say, I'm glad it's not bikini season!

It seems that this is my new normal. I hate being reliant on other people. It sucks not being able to just get up, get dressed, and go run the errands I need to on my own. Now, I have to wake up, change my appendix dressings, put on my compression stocking, take my ever-growing handful of medicine, text my mom to come in and help me get out of bed, hobble sideways down the stairs one stair at a time after the dogs have gone down so they don't trip me, and sit on the couch with my leg up while I ask her to make me what I would like for breakfast. I feel like a burden, no matter how many times I say thank you and please and how grateful I am. I have tried going to the grocery store to help her and it is painful and pathetic - I have to use a motorized cart because I can't walk, and it's like I'm invisible to the other shoppers who don't move or stop for me, I still have to ask my mom to help me with things, and the pain from having my leg down is terrible.

My soul feels exhausted. Most days I wish I could sleep all day so that I wouldn't be in pain and wouldn't have to deal with this, so my mom wouldn't. Getting the news that my clot hasn't even gotten any smaller is especially frustrating and upsetting - at least I thought all of this pain was because it was improving. I try to be positive but it's been very difficult. I am doing the best I can.

And still I wonder - did I savor every moment I had before when both of my legs worked? Did I ever get that inkling that something might twist everything on its head and stop to think to myself, this is it. These are the times I need to remember before it all goes away. Did I? Does anyone? I wish I had. I wish I'd taken one last walk with the dogs when I still could. But one thing is for certain: I will never take that for granted ever again.


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