It is hard to start this note because I have been long thinking about my audience - my friends and family - who have been waiting for an update. It is also hard to start writing the update because there is so much to say and I have been wondering how to begin. [If you are hunkering down to read this now, this is a good time for you to have a cup of coffee, tea, or Diet Pepsi in hand.]
I have struggled with a condition that began in early May. It started with sharp, shooting pain that would travel up and down my left arm. Although I had been busy with a whole series of illnesses for the boys during the spring and hadn't been to the gym for an age, I found myself surprised when I was breathless during a walk. The pain in my arm then progressed to pain across my chest and up into my jaw. I lived with the intensity and frequency of pain increasing it until I wasn't able to push through it any more and, at the end of May, I sought care at the ER. I was given four tests and then dismissed, told that it was most likely a result of anxiety.
That Friday, I was writing a note at my dining room table when the pain became so great I could no longer breathe properly. I started to have tunnel vision and I could feel myself blacking out. I told Nate to go and get his dad (Arden was downstairs sleeping in preparation for night shift) and I called 911. I was sure I was having a heart attack.
The blur of the paramedics coming and another EKG and an uneventful trip to the ER with paramedics giving me platitudes was hard; I was confused as they told me that everything was fine while I knew that everything wasn't. My humiliation of the experience was increased by an ER doctor who didn't take me seriously, nurses who suggested that I was having a panic attack, a CT tech who treated me unkindly, and after hours of waiting, another dismissal... no contact with the doctor, just a few IV removals and, this time, with me leaving the ER barefoot into the Spring night.
From that time on in the weeks that followed, I told very few of the experience and told even fewer of the pain that still remained. No one but me knew about the fact that it still continued to cause me severe pain at times, leaving me awake at night, or forcing me to pause in activity while a wave passed.
I look back and see how I was so embarrassed by the possibility that the pain was psychologically based. My condition is very serious - pulmonary embolisms (and other clot illnesses such as aneurysms and heart failure) are silent killers. The reason I had been given a CT scan was because my D-dimer test result (a blood test which measures the possibility of pulmonary embolisms) was very high. I now know that the heart attack symptoms were a reflection of my lung tissues not communicating pain and the fact that I was not getting sufficient oxygen to my heart. This is a heavy realization.
By the end of June the pain had become almost unbearable. Simultaneously, I had felt my heart was breaking in a hundred ways because of the other journeys I was on. All the same, I followed through with more testing: EKGs, an echo cardiogram and a holter monitor test which observes the heart function over a 24 hour period.
I am thankful for many things, and the holter monitor's ambiguous result in the ST depression is one of them. By the time that the result was read in August, I knew I was dying. I hope this doesn't sound melodramatic - that is the last objective that I have. I just knew for certain that my body could no longer maintain the intensity of the pain. Although I grappled with this knowledge, I still had joy. A joy I had never experienced before. I recognized so much more now the reality of how transient our lives truly are and how essential the consideration of all things eternal is. The life of Milo Barley had affirmed the foundations of my faith; I had been taught through his story about the hope that is to come in Heaven.
Despite this knowledge, the days were long. It felt like I was having random heart attack symptoms from morning to the moment I was lying in bed at night - and often during the night. I'd wake up in the middle of the darkness, sweating and clutching my chest. By suggestion of the doctor, I measured the frequency of incidents on August 17th and I noted 40: pressure, nausea, arm and leg pain, hand and feet numbness, and jaw face pain. The waves of contraction, burning, faintness, and sharp pain between the shoulder blades would be followed by waves of exhaustion. The pain became so unbearable that I asked my friend, Hope, to come in in a capacity of nanny for several hours on the days that Arden was working because I often found myself lying on the boys' cars couch, having the same tunnel vision and working my way into trying to function again for their sakes.
I was losing optimism that anything was possible medically to help me. I started researching different heart disease conditions in young women and began to consider the possibility that I was suffering from a form of microvascular angina. I decided to see if my blood pressure was high, a reflection of this condition. On August 19th I checked my blood pressure at the pharmacy for the third time and again was shocked by the fact it was so low. Abnormally low: 91 over 58. The pharmacist suggested that it was possibly anemia. Okay, I thought; let's check it out. I went to see my own doctor but unfortunately, he was out of town. I went to the lab at the clinic and asked if there was any way I could just have my iron checked. No go; I needed a requisite from a doctor.
Here is where you may have to suspend your disbelief - I know I did. When I told others about this moment, I felt like "if I were to write this out, I'd never be able to describe it and if I were to read it, I think I'd be skeptical, to say the least". Nonetheless, here goes: I had been praying throughout this journey - at every step. By this point, I had been praying for many different things and most specifically, I was praying for a sign. I didn't know what to do. It was Arden's day off. We discussed the low blood pressure numbers and the need for the iron test. I was exhausted, so I went downstairs to sleep. However, I couldn't sleep. I laid there in the pitch dark, in extreme pain, praying. Then, in the most amazing arc, I literally saw the light. Really. Then I saw my grandmother. It was phenomenal and it also made me move. I immediately got up and went to talk to Arden again. Not two minutes later did we have a tap on our door and my friend, who is a physician, came in, explaining that she needed a ride to get a key as she had gotten locked out of her office.
There is nothing in life that is a coincidence.
I jokingly said that I'd trade her a ride for an iron check. She had known about the journey and had been really concerned about my health already. We got the key and she then gave me a check up. I told her about my hesitation about going back to the ER. Since we were getting together for coffee the next morning, she suggested to me that if I still wanted to go in, that we could go to the ER together. The next morning, the pain had escalated and I could no longer feel my hands and feet. Having her to go with me, I felt confident to finally go in. I have since then been both immensely thankful for our friendship and deeply concerned: how did it get to the point that I needed the credibility of having her by my side to pursue treatment? Do other patients hesitate to seek out treatment because they had similar experiences at the ER?
What happened next is part of the blessing: a great triage nurse, an effective ER doctor and phenomenal Internist doctor who comes up as a locum for one week each year. It was his last day on call. I soon found myself in the ICU. A few hours later, I was wheeled into the CT room; the CT tech was the same and again, annoyed to see me. She yanked on my IVs and as I was looking up at the huge machine I couldn't help but wonder why I was there again. I wanted to go home. A few hours later the nurse had come in to tell me that I had what was called a pulmonary embolism. I had no idea what that meant, but I was relieved to finally have a name for it. Another specialist came in to take a painful blood test which comes from the vein that has blood flowing directly from my lungs. This test was to show the size of the clot. Hours later the Internist doctor came to my room in the ICU. I thanked him for finding the result in his "Dr. House" way of persisting and he told me that it paid to be stubborn. We then discussed the clot. No, he corrected: clots. He explained to me that this was pulmonary embolus - many clots in my lungs.
I was grateful to be alive; the number of people who die from blood clots in their hearts, lungs or brains is staggering. My education in clots began then. First, there was no medical treatment for the clots that I currently had. White blood cells had to take on that work and they would work on dissolving the clots. Second, the estimated time for recovery was approximately a year. After the feeling of elation that I finally had a diagnosis, these two pieces of information were hard to process. Even now, almost two months later, the pain still comes with intensity. Third, I was put on blood thinners and admitted to the ward of the hospital. I worked on remaining upbeat during this time and I'd try to find humour in the situation. Instead of thinking of the discomfort of the hospital experience, the fact I was missing my boys, the noisiness, the pain of the I.Vs and the blood tests, I would try to liken it to a "spa" experience where the sound of my oxygen was a bubbling brook, the ultrasound was a gentle leg massage, the removal of my IVs were exfoliating treatments, and the blood tests were acupuncture.
My parents arrived shortly after I was released to help care for the boys - and to help take care of me - as I started my healing process. For now my mom is back here sheltering me and then Arden will be doing the same when she's gone... I know this may seem confusing to those who know me; I have always demonstrated such independence in the past. Yet so much has changed. Now a fifteen minute phone conversation wears me out for several hours and the pressure of going online to see how people are doing on facebook or to answer emails seems to be overwhelming. As with many activities, there is much in the too-hard-box. My busy household of four boys is boisterous and, even still, more than I can manage on my own; when they go to sleep at night, I too, am long ready for rest.
Coming home from the hospital involved dealing with the continuation of the excruciating pain of the clots; I've used heat, rest and a variety of different pain medications to help try to alleviate the symptoms. As I didn't want to return to the outpatient clinic, I learned how to administer my abdominal injections of another blood thinner. Not a fan of needles, I found this challenging.
The majority of the needles were at the lab for the daily blood tests as I continued to work on getting my numbers (INR) to the ideal level (between 2 and 3). I found myself swinging between an extremely low number (high possibility of blood clotting) to a high number (high possibility of internal bleeding). The medication to achieve this is called Warfarin, originally used as a rat poison. Hands shaking, I'd get my mom to check my pills before I'd take them. For example, if I had to take 7mg of Warfarin, I'd have to take 1 5mg and 2 1mg pills. I worried that I'd get my numbers wrong. I worried that I'd drop one on the floor. My INR numbers would be impacted by anything as simple as green tea or a green salad (or anything that had a high level of vitamin K). As for the needles, I have found it was interesting that it was harder for me when the lab techs were sympathetic - the bruises in my arms had made giving blood painful but it was easier not to think about it.
About two weeks later, I ended up in the ER again. My pain had persisted since going home and once again had increased to an unbearable level. Hospitalized and after being given a 'pink lady' shot and morphine, the three IVs were inserted again and more tests were ordered. Another CT scan revealed that thankfully there were no new clots and that the clots were breaking up; but in the process, they were causing more pain as they ended up in the periphery of my lungs. The highlight was the impromptu 'in-room house party' with my amazing friend who had come to pick me up. I left the hospital with a trail of blood behind me (I found this funny enough at the time... one of my bandages from the IV removal was faulty). At home, I started to feel like I was a senior citizen as my medication bottles lined up on my counter top and I'd find myself taking anywhere from 3 pills to 9 at a time.
At the end of September, Arden and I drove to Edmonton to see the specialists. A series of 9 blood tests had been ordered to see if there was a pre-existing hereditary condition to explain the source of the clots as all other possibilities had been ruled out. I was anxious to see the hematologist for more answers. After a very disappointing 2.5 hour wait, I still had no answers. We left to the next appointment - the cardiologist - and I was given the confirmation I needed that there weren't any underlying heart conditions. After wondering for months about the condition of my heart, this was a huge relief for both of us. I was able to have a phone consultation with the hematologist a week later. The unfortunate news was the reality that this was a lifelong condition due to the fact that there was no evidence of a source. The fortunate news was that there was another type of blood thinner available that would not require blood testing or regulation of INR numbers.
I switched onto my fourth anticoagulant with both excitement and trepidation. It was hard to accept that I didn't have to control my numbers anymore. In fact, without knowing where my "numbers" were, I'd have to go forward in faith that my blood thinness was where it needed to be.
About 24 hours into taking the anticoagulant, the side effect of nausea was becoming unbearable. I found myself dry heaving for hours and unable to rest. A migraine level headache began at the same time and by Wednesday, I began to become concerned as I was losing the little amount of functionality that I had regained. Concern from the medical journal reports that the headache might indicate inter cranial bleeding (and after 4 days of the intensity of pain, I wondered if it weren't in fact something as serious as that), I sought out my doctors again. The hematologist switched me to another anticoagulant and, thankfully the nausea stopped within 48 hours. The headache persisted and my physician encouraged homeopathic treatments as migraine medications are not possible with my condition and the only other alternative was a cranial injection. Thankfully, three days later, the pain was finally alleviated via the application of heat.
The emotional fallout of this experience has left me often crying rivers of tears when I thought there were none left within me; and yet, recognizing all the more now how much God is control, I take nothing for granted and hold on to unsinkable joys.
I am now on the new (new-to-me and new-to-the-market), very expensive, anticoagulant. Additionally, I am taking anti-depressants, a sleeping aid, as well as my medication to help mitigate the impact of the pain from the clots. In the morning, I take one medication that has a side effect of an appetite suppressant and at night, I take another with a side effect that encourages appetite. The sleeping aid I have been prescribed has caused me nightmares of unbelievable images - night terrors - that are nearly impossible to fight my way out of. Although they give my body the seemingly ridiculous amount of sleep it requires, the side effect of the nightmares also terrifies me. The medications and side-effects are much to struggle with; though through it all, I haven't lost sight that I am still here on this journey.
I am starting to learn my new normal - though I know I'm not there yet. I am praising God for there has been much healing; I see each day as a gift.
There's also a whole new awareness now: on the positive side, I am so much more grateful for the multitude of blessings in my life; on the negative side, I am having to learn my limitations. Some of them are taking time to work through as even the use of kitchen knives make me wary - the knowledge of how much I bleed when I am cut even a small amount has been hard to contend with. I still wrestle with the realities of my condition - confused when even clapping enthusiastically with Samuel made the tips of my fingers bright red and numb for forty minutes afterwards. I am refusing to live by fear, but rather to go forward with faith in spite of the moments where the unknowns threaten to overwhelm me. I am recognizing that I began the journey unaware of how much endurance it would take to continue on. I am working my way through these moments with hope and the assurance that this is a part of the healing process.
In each moment of this ongoing storm, I have felt the anchor holding - my faith is keeping me steadfast. All the same, it is a hard transition; for a mother who was once able to do so much, I now find myself limited to minimal activities with the children. It has been upsetting to not be able to do these simple things; from picking up Andrew and Samuel to going to the grocery store, I see how what once was a simple activity for me now feels like a major effort. I have humbly, yet gratefully, accepted help from some amazing people with getting my older two children to and home from school, going to park and getting to their activities.
As I am about to celebrate my 33rd birthday, I can't help but think about Bilbo Baggins celebrating his 111th. Bilbo plans a grand celebration and then dramatically disappears, telling Gandalf that he feels like 'butter spread too thin on bread', and taking the road from the Shire. The Lord of the Rings series has helped me through this period of my life in many, many ways. If you haven't read it, try to take the time to watch (or re-watch) the film version. There is something to be said about the fact that we cannot choose the times we are to live through but that we can only determine what we are going to do with the time we are given.
I see now how lengthy this is note is - I have to admit that it took a great deal of effort write it; that it took a long time to compose and that I've also been thinking about it's composition for a long time. I am writing it not only document my condition but also because I am having to adjust to understanding my own limitations. I've been concerned that I haven't been able to continue with my communications; please don't be upset if you feel like I'm not there for you. I am just not able to be as this is an unfortunately disabling condition. It has been challenging for me as I have been having to recognize that as much as I once was able to pour out into the lives of others, I am having to wait on God's provision for even - and especially for - the little things.
