What happened? The short of it: I had a subarachnoid hemorrhage. That’s fancy speak for a vein in my brain bled and caused a few other complications. No one really knows why. I’m just special like that I guess. It bled and it shouldn’t happen again…shouldn’t – try telling my health insurance that when they are figuring my premium for next year. If it does happen again I will be written about in books because doctors have never seen it “just happen” (without cause) twice in one person. Additionally, while I was in the hospital they discovered that I had a blood clot in a vein in my leg so they put an IVC filter in just below my heart to catch it or any others that I may have developed. At some point in the future I have to go back and have the filter removed. If that satisfies your desire to understand what happened, you don’t need to read further. You have the short of it. If you want the sarcasm filled long of it, by all means, read on.
Friday night, January 11, 2013 Brandy and I left the kids with two wonderful teenage young ladies and went out to dinner and a movie. I intentionally ate a late breakfast, skipping lunch, because I was sooo looking forward to dinner at Hibachi Grill, an all you can eat Mongolian bar-b-que and buffet. Naturally, in an attempt to get my monies worth I stuffed myself to oblivion. I don’t know that I had ever made myself so full. I felt ill, as in vomitous, and slipped into the bathroom prior to leaving the restaurant with little relief.
Having some time between dinner and the movie we made a few stops – Bath and Body works, Best Buy, & Home Depot. I frequented the restrooms at these locations as well, but simply could not get any relief from my over indulgence. Brandy asked several times if I just wanted to go home. There was no way I was going to let my stupidity ruin the evening for her. I would survive. So to the movie we went.
At the theatre Brandy picked up our “complimentary” water cups, for those of you who are cheap like me – don’t get too excited – these are simply small Dixie cups you can fill at the water fountain and take into the movie with you, and we settled into our seats where I was much more comfortable and much less nauseous. Prior to entering we were unaware that we were going to the “Senior” movie as we were the youngest in attendance, by a long shot – Lincoln. It was a good movie. I enjoyed how well they played the dilemma for Lincoln between ending the war and getting the 13th amendment ratified. There was a lot of good history and it was a movie that caused me to think for myself– Which is always good. But you’re not reading this because you wanted a movie review.
We got home, sent the kids sitters off, and checked the doors to be sure we were all locked and headed to bed. As I laid down, I felt extreme pressure rise up the back of my head. I immediately sat up to feel the pressure settle along the back of my head. No matter which way I turned the pain would not subside. I proceeded to the kitchen in search of a large glass of water and some Ibuprofen. I had no idea where such pain had suddenly come from. The ibuprofen was no relief so I groaned a little louder in hopes that Brandy would come rub my neck and the pain would begin to subside. She came, she rubbed, but all that did was give me large spots in my vision. Brandy suggested a hot shower. And then a hot bath. Nothing. To whatever side I hung my head the pain became more intense. There was no relief to be found. I had never had a migraine and with the spots that was my automatic assumption. Then the nausea came back and the vomiting began. At this point I just asked Brandy to leave because I didn’t need both of us vomiting.
The last thing I clearly remember is looking at my phone at 2:28 am. Since that time Brandy has had to fill in some blanks. She found me still groaning in pain at 7 am. I apparently told her I still had the headache and had not slept. She got in touch with a good friend to sit with the kids while she took me to the dr.
The PA at the office informed us we needed to go to the ER so they could get some IV meds in me that she was not capable of dispensing. I continuously asked Brandy the same questions over and over about where the kids were, who they were with, etc. The only things I remember from the Dr.’s office was that the PA wore purple scrubs with a Power Cat on them and “Great, not only did we waste the $25.00 co pay, but now we have to pay our $100 ER co pay on top – FANTASTIC!” (The PA was kind enough to refund our co pay.)
The ER is an even bigger blur. They put an IV in me, ask me a bunch of questions, including “Do you smoke?” to which I replied “Only when I’m on fire.” And sent me down for a CT Scan. The doctor came in shortly and informed us that I had a Brain Aneurism and they were sending us to KU Med via ambulance to see a Neurosurgeon. Once again I apparently saw the dollar signs flashing and ask why Brandy couldn’t just drive me herself. (I have no recollection of this, it’s just what she tells me.) I know she made a few phone calls and several people were on their way and Pastor Joe was standing at the end of my bed.
Once in KC they did a CT scan with contrast to try to get a better idea of what they were dealing with. The doctors converged and decided that it would be best to do an angiogram first thing Sunday morning. An angiogram is very similar to a heart cath. A catheter was placed into my femoral artery and guided up to the two major arteries in my neck where they injected dye/contrast. In doing so they were able to watch the blood flow through the arteries in my brain and back out.
The angiogram didn’t reveal an aneurysm. At that point the doctors concluded that I didn’t really have an aneurysm, but a subarachnoid hemorrhage – Where a vein, as opposed to an artery, in my brain had bled. Being a vein it was much lower pressure. But as long as there was blood sitting on my brain from the bleed, there would be pressure, which in turn caused the unbearable headache.
But a couple of the doctors in the group weren’t satisfied with the results. An aneurysm, which is basically a large blister in your artery, can clot on it’s own and effectively not been seen on an angiogram because the dye follows the flow of the blood and is not absorbed by the clot. Consequently, they thought it would be best to keep me for a week and do a second angiogram on Friday.
Additionally, because of my medical history – namely that being my left lung has spontaneously collapsed 3 times and my right one could do it at any time as well. There is no explanation for my lung collapse other than I have “blisters” on the top of my lungs that just pop. I’m just special that way. After the third time my left lung collapsed they went in and cut off the blisters and stapled my lung shut. I also dropped out of college one semester and spent some time at Mayo because I had an unexplained illness no doctor in Wichita could pinpoint. After all the testing at Mayo they decided I must have contracted some type of encephalitis from working in large animal receiving at the Veterinary Med Center. Those two unexplained phenomenon’s, combined with the current “mystery of life” and my daughters unexplained heart condition, they decided to do more extensive testing while I was there to see if they could pinpoint some type of collagen/connective tissue disorder. So they called in Rheumatology for answers.
On Monday the battery of tests began with the daily doppler scan of the blood flow in my head. They continued by doing everything from extensive blood work to an ultrasound of my kidneys and bladder, along with another CT scan of my chest to look at my lungs and an echocardiogram.
Tuesday brought more blood work and an ultrasound of my legs – where they found a blood clot in a vein in my right leg. Because of the bleed in my head they couldn’t just give me the normal shots to thin my blood and dissolve the clot for fear it might dissolve a clot in my head and cause me to bleed there again. Consequently on Wednesday, they placed an IVC (inferior vena cava) filter in my inferior vena cava, via my neck. “An IVC filter is a specially shaped mesh…that acts like a strainer…to catch and stop blood clots (that might break loose in my lower extremities) from causing pulmonary embolism.” At some point within the next year it will have to be removed. “Whenever I’m done with it.” How and when that will be determined is still up in the air. Now I’m in a holding pattern…waiting – something I’m not very good at doing.
Because of the medications they gave me during the IVC procedure, I don’t remember much about the rest of Wednesday and even into Thursday. I was back to living in a blur. But it wasn’t much different than the rest of the week because I spent the majority of my days and nights sleeping.
They persisted in running various tests and blood work. The doctors reviewed my medical records from Mayo and elsewhere attempting to find some common thread through it all. But to no avail. The Rheumatologist returned late in the week to tell me that they couldn’t connect the dots. There was nothing they could pinpoint. There wasn’t even anything that they could begin to lump it together under. I’m a medical mystery…in more ways than one. And none of them can be connected to the other. In short, I’m special. Some might even consider me unique, just like everyone else.
Sometime late Friday they took me in for a second angiogram. Thankfully, they didn’t find an aneurism. So, it was confirmed that I had a subarachnoid hemorrhage. No one knows why. All I had to do now to go home was to get off all IV meds and learn to control my headache with pain pills. Sounded so simple…not so much.
Back on Monday the doctor asked if my back had started hurting. At that time it hadn’t, but by that evening I felt like I was 96 and I walked like it too. Apparently, as the blood dissipated from my brain it moved down my spinal cord – which was good because there was less pressure on my brain, consequently lessening my headache. But the blood that travelled down my spine caused pressure in my hips and joints making me feel like I had just run a marathon and everything was cramping up. My hips would lock up while walking. Everything was inflamed. And once again I couldn’t take an anti-inflammatory like ibuprofen because of the effect it would have on thinning my blood. They had started giving me a steroid via my IV to decrease the inflammation and allow me to move more freely. Consequently the idea of having to switch medications and hope that the pill form of the steroid would work as well as the IV just wasn’t very exciting. Additionally I was no longer going to be able to get pain medication via my IV. I had to learn to control the pain with pills. Not something I was looking forward to because if I got behind, it was difficult to get back ahead – especially if I couldn’t use the IV drugs.
Saturday and Sunday went better than expected. The doctors came in Monday morning, now having been in the hospital a little over a week, and told me I could go home. They packed me up with my meds and Brandy and I were home before 5.
Over the next few days, with the help of a pharmacist friend, we figured out a schedule for taking my medication and I slept a lot. It seemed like every half hour I did something I spent an hour sleeping. Sleeping so much during the day made it difficult to sleep at night – which made it difficult for Brandy to get any rest. It was a crazy catch 22 cycle.
On Friday, January 25th I had a follow up visit where the doctor said everything looked good. I still have a constant headache and body aches, but as long as I stay ahead of the pain I do ok. The doctor said this could last up to two months. Doesn’t that sound exciting?! I sleep a lot more and take a lot longer to do things than I did previously. But in time things should return to normal. I don’t go back to the doctor until sometime in March unless Radiology calls and wants to remove my IVC filter. Until then, we just wait.
I want to say thank you to all of you for praying. As I have told my wife and parents, from experience with my daughter I know it’s much easier to be sitting in the hospital bed than be sitting in their position. I know it was extremely difficult for them to sit and watch helplessly. Psalm 46, especially verse 10, was the verse to cling to.