It was almost exactly one year ago today that my family and I got the scare of our lives. It was one year and two days ago that I was rushed to the hospital and placed in the ICU with severe acute pancreatitis. I haven't written about it, or even more than vaguely mentioned it in the Mama Pea Pod Facebook community. But now, on the anniversary of the event, I want to share a little about it as part of the 21 Days of Gratitude Project, because it certainly made me realise what it is that I am truly grateful for. This is a long post, and I apologize for that, but I can't really make it shorter and have it still be meaningful, so please bear with me.
Pancreatitis is an infection of the pancreas, the organ that is responsible for producing digestive enzymes and then squirting them out to your intestine where they digest your food. (Yeah, I didn't know what it was either!) Severe acute pancreatitis is a potentially deadly illness in which your pancreas becomes infected - in this case by a blockage of the duct through which those digestive juices travel. The problem is, the blockage doesn't stop those acids from being produced in the pancreas, but with nowhere to go they remain in the pancreas - essentially, they begin digesting the pancreas itself. Severe acute pancreatitis has a 1 in 3 chance of a fatal outcome at the stage at which I had it.
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It's hard to say where this story really begins; perhaps 7 years ago, during my first pregnancy, when the pain first began. After 5.5 years of suffering recurring bouts of intense pain that was misdiagnosed at various times as normal pregnancy-related discomfort, back injury during childbirth, indigestion, and lack of exercise, I was finally diagnosed with gallstones during an ultrasound for an unrelated virus. Despite having specifically asked my doctor if gallstones could be the issue, and despite having several family members who had had gallstones, I had been told it wasn't. But when it was finally discovered, the ultrasound technician was shocked that I didn't know about it, as there were, in her words, "a lot of them!" (I later received a cup of them after surgery, and there were 40 or 50 of them that had been removed from my gallbladder.) When I told her that the pain had started when I was pregnant with my oldest child, she was unsurprised and said that often gallstones start during pregnancies because high estrogen levels can trigger them.
The surgeon came to look and said I would need to have my gallbladder removed at some point, but there was no rush, just whenever I felt like I wanted it done and I had some time. Well, we all know how much time parents of young children have, right? And full-time teachers. And the mix of those two roles together... ha! (For a humorous look at a mother's priorities in taking care of herself, see "I'll Take the Root Canal" by Sellabit Mum.)
So a few months later I was at school and I got the same, familiar pain again - starting as back pain that gets progressively worse and travels round to the front, concentrating in the sternum area. The pain often gets so bad that it makes me nauseous, and sometimes even causes me to throw up. Nothing makes this pain subside, and no movement or change of position helps in any way. I just have to ride it out, which usually takes a couple of hours. It was the first recurrence since the diagnosis. Although I knew there was nothing I could do about it, since I had a lunch break followed by a prep period, I decided to head down to the school nurse's office, because at least I could lay down there on a bed for a while to wait it out, rather than on my grungy classroom floor. I thought maybe if I lay absolutely still it might pass quicker and I would be able to make it through the rest of my afternoon classes without having to leave.
When I got to the nurse's office, she was more concerned than me. We were due to fly to Scotland the next morning for Fall Break, but the school nurse insisted that I go to the hospital right away. Despite my protests, she called my husband to come get me, and I was taken reluctantly to the same hospital again for the surgery. Bye-bye vacation.
The surgery reportedly went well and I was told that I would need to watch what I ate for a couple of days, but then I should be back to normal. That didn't happen. I continued to have the same pain in the days after returning home. My husband called the surgeon, who said sometimes there can be some pain afterwards, but not to worry, he'd check me out when I come in to get my stitches out.
A week after the surgery I returned to have my stitches removed. I still wasn't able to eat anything without the pain and nausea returning. He ordered another ultrasound, which he and the ultrasound technician went over together and announced to be clear. Nothing to worry about. When we inquired why it was that I still felt that way and couldn't eat anything, he said that some people's bodies just take longer to adjust than others.
I lived pretty much on plain bread for the next couple of weeks, but finally it did seem to improve a little. I could eat some very bland foods, and gradually started to introduce more foods. I had a couple of days when I felt better, even almost normal.
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The next Sunday, we went out for a family day. I felt pretty good that day when I got up, just a little weak from not having eaten properly for weeks, and we spent a lovely morning at the National Dance Theatre watching a performance for children. We stopped afterwards to watch the changing of the guards at the castle, and we decided to eat out for lunch while we were downtown. We went to a favourite restaurant and ordered our usual dishes - ramen soup and dumplings - though I was mindful to 'take it easy' with eating so I only ordered the soup for myself.
As soon as I began to eat a few spoonfuls of the soup, I immediately started to feel nauseous. I can't remember now if I had the pain at that time or not, I just remember feeling suddenly extremely nauseous. I told my family we needed to leave immediately, and my husband had the waiter pack up the food while I waited in the car. All the way home I was just hoping to make it back before throwing up, but I couldn't. We had to pull over about 5 minutes before we reached our house, and I was violently ill by the side of the road.
The rest of that day and the next I stayed in bed. I took a sick day off work and slept most of Monday. By the next evening I felt improved, so I went to work on the Tuesday. I felt ok, though there were a couple of moments where I didn't feel quite well, but they passed. On the Wednesday I felt a little worse again, but I still went to work because it had been a month of this by this time, and I couldn't just stay home all that time. I was doing ok until nearing lunchtime. I started to feel sick again, but I had recess duty outside, so as soon as my class ended I had to go out with the kids. While out there, I started to feel progressively worse. I had to sit down on the play structure, as standing was making me feel tired and weak. The nausea worsened and eventually I told the other duty teacher that I had to go to the bathroom but would be back.
Little did I know I wouldn't be back for 7 weeks!
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If there's one thing I'm most grateful for in all of this experience, it's our school nurse. If it weren't for her, I wouldn't be here typing this now, that's 100% certain. I'm not one to go to the doctor unless I'm dying, pretty much (and apparently that's more true than I knew!) She wasted no time in sending me straight back to the hospital. No ifs, ands or buts. This time I was so ill and weak that she and my husband had to pretty much carry me out to the car, because I couldn't stand on my own. They each took an arm to prop me up, and I lay down in the back seat. I do remember the pain was very intense by this time. It was lower now, like stomach pain, rather than the higher-up gallstone pain I had grown accustomed to over the years. It was faster for my husband to drive me than to call an ambulance, and the nurse called ahead to let them know to expect us, but every bump along the road caused me to moan and cry out. My poor husband was very worried, I could see it on his face as he kept turning back to look at me rolling around on the seat, but he managed to get us there.
When we arrived at the hospital, I was quickly whisked off for blood work and another ultrasound. My memories of much of this are quite fuzzy, but I remember the ultrasound was agony because I had to lie in such a way that made the pain much worse. It felt comparable to childbirth, only without the sense of peace that comes with knowing that it will all be worth the 'prize' at the end. The ultrasound revealed that there was still one stray gallstone that had escaped and was lodged in the pancreatic duct. The blood tests confirmed that I had severe acute pancreatitis. The doctors said they couldn't treat me at that hospital as it was too severe and they weren't equipped for it; they needed to send me to another one. Again, my memories are foggy, but I know it took quite a while to organize. I remember the doctor returning several times to tell us they were trying to reach a particular specialist to arrange to send me to him but were having difficulty reaching him or something. Eventually, I was transferred to the other hospital, where the country's top specialists in gastroenterology work. It was completely dark outside when I was taken out to the ambulance, even though it had been lunchtime when I left school.
I spent the next week in the ICU in the gastroenterology ward. I can't even begin to describe what that was like, but if you've ever been in the ICU you know that it's no fun at all. Combine that with the fact that it's the gastroenterology ward (I'll leave that up to your imagination.) And then top it all off with the realities of Hungarian hospitals where you feel like you've been transported back in time to the 1930s - white tile walls (or, at least, they were presumably white once), silver metal bed frames, harsh, bright lightbulbs glaring down from the ceiling above the beds, and bright yellow plastic shower curtain 'dividers' that only provide minimal privacy 1 meter at a time. Patients are responsible for bringing everything - from soap to toilet paper to drinking water (though I wasn't allowed water anyway). My very basic Hungarian language skills diminished completely in the face of such intense pain (for that matter, so did my English language skills!), and none of the nursing staff, ultrasound technicians, CT scan technicians, etc., spoke any English, so communication was challenging.
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I was lucky in so many ways. Visitors were only permitted to come during one visiting hour each afternoon, but the nurses soon realized that it was much easier for them to let my husband stay to translate for them, so he was allowed to spend all day with me except for visits to the various tests and treatments I had. Each morning he arrived after breakfast, donning the blue gown, shoe covers, and surgical mask that was required upon entering the ICU, and stayed with me until evening. My in-laws moved into our house to help take care of the kids so that my husband could be with me at the hospital. And my parents flew over to be close to me and to help with the girls as well.
The procedures that I underwent as part of the treatment were the stuff of nightmares, and made all the worse by the fact that I didn't know what was going on most of the time, since my husband wasn't allowed to come with me for most of them. The worst was when the gallstone was removed by endoscopy and at the same time a feeding tube inserted deep into my stomach so as to bypass the pancreas or any need for it. I had been told that I would be asleep for it, but that didn't happen and I didn't know what was going on, why the doctor was doing this while I was still awake, if he was making a mistake thinking I was anaesthetized when I wasn't. I struggled to try to let him know, but his response was to get angry and shout at me. He continued while the nurse held me down. I was terrified. The following day they did an ultrasound to check that the tube was inserted in the correct place, and it wasn't, so I had to endure it all over again. At least the second time I knew what was coming and knew there would be no anaesthesia, so I was able to be much calmer.
But I really was lucky. At 37 I was the youngest person in the ICU by at least 30 years, so I had my relative youth going for me. There were 6 beds and various people came and went during the time I was there - some because they improved, and some because they passed away. I had never seen a person die right in front of my eyes before. The doctors and nurses all told me that it would be so important to the healing process to stay positive, so, despite the misery of my surroundings, I did my best by spending my time updating my facebook statuses with comic accounts of life in the ICU. (If you don't laugh, you'll cry, right?) Being able to connect to the outside world was a godsend, and certainly enabled me to be as positive as I could under the circumstances.
But the hardest part of all was being away from my kids. Children weren't allowed to visit the ICU, and when I eventually got moved out to a regular ward (thankfully, private and much more comfortable - because the truly 'regular' public wards weren't much better than the ICU), they both came down with colds and couldn't visit for risk of infecting me. I didn't see them at all for 2 weeks; by far the longest I have ever been, or ever hope to be, away from them. Every moment I was alone all I could think about was the possibility of not coming through this and the impact that would have on them. How it would be for them to grow up without a mother, how they would turn out without a mother's influence, how the trauma would affect them and how they would cope. I pictured all the important events in their lives that they would not have their mother with them for - graduations, weddings, babies of their own... I knew that at such a young age, my oldest would eventually have only vague memories of me, while my youngest would have no memories at all. That thought was the worst pain by far. I had my husband bring me notepaper and pens so I could write them a letter. I wanted them to have something to show them how much I loved them, in case it turned out to be the last time I got to tell them. I imagined them cherishing this letter forever, keeping it in a special place and taking it out to reread it at various meaningful moments throughout their lives. I still have it. Fortunately, it won't be them taking it out to reread, it will be me doing that.
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| Letter from my 2 year old |
It was tormenting for me to be away from them, but it was perhaps even harder for them. Princess Pea, aged 5 at the time, was at least able to understand somewhat what was going on, though we of course didn't share the seriousness of it with her. But she understood what it meant to be sick and had been in hospital herself. Her experience of a hospital, at a private clinic that serves expats and very wealthy Hungarians, was lightyears apart from this, so she presumably believed I was enjoying some rest and relaxation in a hotel-like atmosphere and watching hour after hour of Strawberry Shortcake episodes. When she did finally get to visit me, on my second last day in the hospital, when I felt and looked infinitely better than I had up to that point and when I had only one tube left attached, an IV hook-up in my neck, she was shocked at the sight of me, and didn't want to get close. The tube coming from my neck scared her, as did my arms - both completely black and blue all over from the twice-daily shots I had been receiving, each one leaving a dark, plum-sized bruise. I was thankful then that she hadn't seen me before. Sweet Pea, meanwhile, was traumatized from the start. At 2.5, her understanding of 'sick' came from the experience, just a few months earlier, of losing her beloved great-grandmother who had suddenly fallen 'sick', gone to hospital, and passed away there in a matter of a couple of weeks. Sweet Pea asked constantly when I was coming home, and wet the bed every night I was gone. For months afterwards she wouldn't let me out of her sight, going into full hysterics every morning when I left for work; even starting from the time I got home from work she would constantly question when I would be leaving again and continually cry inconsolably at the prospect of me leaving the next day. Even now, a year later, we still see the effects on her. On both of them, really.
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| First drink after 2 weeks - best tea ever! |
Finally, just a little over two weeks after arriving, I was permitted to go home. It was a huge relief, as we had originally been told it would be at least two months before I could leave, and that that would be if everything went well. This was an unexpected blessing! I was on an extremely restricted diet for the first month, which was challenging as there were literally about 5 ingredients I was allowed to eat or drink, so I needed to have completely separate meals prepared. After I went back to the hospital for my follow-up check-up a month later, I was able to add a few real food items, but it was at least 6 months before I was able to resume a normal diet again.
As I said, I was very lucky. I think my unexpectedly quick recovery can be partly attributed to my relatively young age and to being able to mostly keep up a positive spirit thanks to my friends and family. But I believe that it was also partly due to a deep, intrinsic drive to get through it for my girls, to get home to my girls. The magic power of children. Nevertheless, I know that many families are not so fortunate. Many endure much more extended hardships with less favourable endings. Many experience distressing hospital visits on a regular basis due to chronic medical conditions. And for many, it's the children themselves who are the patients. We are very fortunate.
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| Just home from hospital |
So when I think about Gratitude, I think of our school nurse who got strict with me and without whom I wouldn't be here; the medical staff that treated and cared for me; my husband who spent every day by my bedside, taking care of me, translating for me, and worrying about me while keeping it all together at home for the kids; my parents and in-laws who helped out so much with the kids; my friends and colleagues who chipped in with meals for my family every day for a month, reading material for me, and Christmas baking for the kids; our comprehensive, private medical insurance through our work that allowed me to move to a private ward after leaving the ICU; and most of all for the chance to be here with my children, to hold them tight and to see them grow up.
Because they really are the closest thing to magic.
Thank you to Mari of Inspired by Familia for creating and organizing the 21 Days of Gratitude project.
Each day in November, a blogger will share a quote with you and an activity or their words of gratitude as we celebrate this month of thankfulness. Join us.
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