My personal experience of illness so far

I realise that I'm a sample of one so I'm going to give you my experience so far from my first real experience of being ill (other than the occasional cough or cold.) Mostly for me so far it's been one of intense boredom interspersed with moments of panic, sadness, and occasional contentment.

When I was acutely ill in the hospital, time passed quite quickly and there was a lot going on and a lot to process. The days were broken up with periodic visits by the nurses to administer medication or to assess vital signs, as well as awaiting tests, results, and visits from the doctors or any other healthcare professional that may have been requested to see me. Also, for me, as I had been feeling so unwell for quite some time and had deteriorated rapidly just prior to my admission, there was such a sense of relief once the intense physical pain was taken away, that I was almost euphoric.

Once I was discharged, my family arrived from various locations and I was surrounded by love and support. My parents live in Galway and as does my adult son so they arrived together, followed by my sister who traveled down from Dublin. My adult daughter was already at home as she was on midterm break from her university course in Paris. It was crowded and more than a little chaotic, but it was a mini family reunion so my mood was upbeat.

Of course, then they left - my sister to return to Dublin and my parents to fly to New York and then Los Angeles on their annual trip to visit my fathers' side of the family in NY, and my brother and his family in LA. There was the initial relief of having some private space after the hospital admission and those daily small victories of needed less pain medication, or being able to walk for longer or at a faster pace. And then the physical plateau began where it occurred to me that this might be as good as it gets. As difficult as this alone is to process, negative thoughts began to creep in about what further diagnoses might be waiting down the road. Time began to pass in increasingly small increments with nothing to distract me. The day I was expecting the results of the CT, I walked seven miles just to make time pass a little more quickly.

Part of the problem may be that I have told very few people the full story of what is going on. My friends here in this adopted town of mine know about the PE, but they have busy lives with a lot going on at the moment. Additionally, as I met my local friends through running it's not as if I could just mention it in passing on a Sunday morning 8 miler. One friend here knows what is going on, another who has recently moved to Galway I confided in also, as well as a long-time friend and work colleague who I dissected the CT images with before the official radiologist report came back. Actually now it sounds like I've told loads of people! I'm aware this is on the internet, so very public, but google tells me nobody reads it so while documenting this here is therapeutic for me, it's not like a support network with feedback and input from others in similar situations.

I suppose, as I'm very family focussed, it feels like I haven't told anyone, as none of my family know except my partner and my sister. As my parents and daughter are overseas at the moment, I don't want them to panic for something that could be nothing. In the case of my daughter - this Erasmus year has been great for her so far and really brought her out of her shell so I'm reluctant to cast a shadow over that for her. And obviously, I can't tell anyone else until my parents and children know so I had to lie about my CT results to my parents and all of my extended family over and over again.

So for some good news after all that heavy stuff. I don't have to take these lads twice a day now.

I'm on the 20mg once a day instead which is far more manageable. As they have to be taken with food it was a bit of a logistical nightmare trying to make sure you were having two substantial meals 12 hours apart. Like what if you are hungry for your dinner at 5pm? (totally possible if you are not working and hanging around the house all day!)

Also, as of Thursday, I'm back to work. I basically begged my GP for a fitness to return to work cert in exchange for working exclusively from home for the next month. It turns out I'm not suited to waiting around for things to happen so I may as well fill my day with work that I enjoy. While it looked like this saga was going to be an isolated incident with a gradual return to full health, that seems unclear just now so in the meantime I'll keep myself busy the way that comforts me, by working my socks off!

Dancing around the C word

My healthcare experience means that I could hardly avoid the thought, from the very beginning of this process, that cancer was a possibility.  I may have mentioned it in a blase way to friends and family but it was very much at the front of my mind and directed where my energy went in pushing for the tests I believed to be of the highest priority. No simple task I'm afraid, and to those with no healthcare experience, you have my greatest sympathy in getting this done alone!  My GP called this afternoon with the results of my CT abdomen/pelvis and the news that there will most probably be a biopsy in my near future. There appear to be some simple cysts in my spleen, kidney, and ovary that she didn't seem worried about, however, there is a 2.3cm mass below my right lung on the lining inside of the chest wall (pleura.) The reporting radiologist commented that it doesn't have the appearance of infection so I guess we wait and see. I'm waiting for an urgent appointment to see the respiratory team that I was under during my admission and will see what happens.
I genuinely thought I was ready to hear that this might be a possibility, but I shook for about an hour after the phone call. Anyway, hopefully, this is all much ado about nothing!

Recovery: Two weeks post discharge

I'm learning that a week can be a long time in recovery from a major health event. In my case anyway, this week has felt much more normal in that I've had a lot more energy and so have done more. I'm still sleeping quite a lot and feel that I need at least 8-9 hours per night at the moment, whereas I would have been fine with 6.5-7.5 previously. My days have been quite full, with a mixture of walking, self-enforced tasks around the house, and chasing up my outstanding medical tests. I finally had my CT abdomen/pelvis on Thursday morning (after three phone calls and a little cry on the phone to one of the admin staff) and will hopefully have the results of that on Monday. 

From a physical point of view, I'm relatively pain-free at rest at the moment unless I'm lying flat on my back, and have not had to take any painkillers for chest pain this week, but some for a persistent headache early in the week. In TMI news, I'm on day thirteen of my period at the moment so that is super fun - my poor underwear drawer doesn't know what hit it. A set of sheets has already ended up in the bin so this could get expensive if it happens every month. Oh well....blood thinner life! I will try to self-soothe by buying nice new undies and I have already replaced the sheets.

Walking is feeling easier and I have been able to up the pace a bit without too much chest pain. Inclines are certainly easier. I'm trying to walk 4-6 miles per day depending on what else I'm up to and I may try to up that next week to 5-7, although this may be weather dependent as it's beautiful walking weather at the moment. I'm telling myself that I'm waiting for a clear CT before attempting a run but, to be honest, I don't feel any urgency to run yet as I'm not sure I'm physically ready. Also, I'm scared, so there is that!  

PE recovery: 1st exercise target achieved!

It is with great pleasure that I can report that I managed to walk all four miles today. Woohoo! Whilst there is a tiny amount of mixed feelings about how mundane that target is for someone with my fitness history, I'm trying to put that to the back of my mind. I felt relatively well throughout with only some mild chest pain on inclines, and that stopped as soon as I took the effort back down to what it was on the flat. Another milestone was that I had energy when I got back. I called into the shop, tidied up a bit, and put together some lunch. A few days ago a three-mile walk was wiping me out and I would have had to go and lie down after. Progress!! 

I also feel I got a teeny tiny bit of colour back in my cheeks today, after being deathly pale up until now. See there under my left eye there is a little bit of pink? No?

Recovery one week post discharge

I seem to on a bit of a recovery plateau at the moment, but it is early days I suppose. My chest pain at rest and on exercise has neither improved or disimproved, but I have tapered off any pain medication drastically. Today I took 500mg of paracetamol but that was it. For a couple of reasons, I have the urge not to dull the remainder of the chest pain. I find it reassuring to note that it's still in the same places and that there is nothing new, and when I do try to exert myself a little, being aware of the pain forces me to back off a bit. I failed to achieve the four-mile walk target I set myself but that is mostly due to appalling weather yesterday combined with a trip to the airport with my parents and a GP visit.
My GP was fabulous and ordered the tests that I should probably have had as an inpatient, and also checked my moles. It was due to her that today I finally had a duplex venous scan of my lower limb to rule that out as the source of my clot. Negative, as expected with my lack of leg pain and swelling but at least that is one more thing off the list. I would have felt silly paying for a CT abdo/pelvis to then find out that I had a leg DVT that caused the whole thing. She has also ordered a routine cardiology consult due to an ongoing exercise-related tachycardia issue that it most probably unrelated. And, I also booked an appointment with a dentist for a check-up and oral cancer screen (to my shame, my first dental appointment since I moved here!)
In exercise news, I walked 2-3 miles today. I'm not sure of the exact total as I didn't do a route I'm familiar with and wearing my Fitbit at the moment would be too depressing - it kept buzzing at me in the hospital as I was basically sedentary for three days and that is very unusual for me. Tomorrow, to my knowledge I have no GP, hospital visits, etc (fingers crossed!) so I really hope to hit that four file target, even if it's in two chunks.

Recovery 1 week post diagnosis

It has now been a week since my diagnosis with bilateral pulmonary embolism and I've started to feel more normal. So naturally, I'm starting to think about running. Or rather not thinking about actually running, but thinking about whether I should be thinking about running. There doesn't seem to be a lot of guidance about when to resume normal activity but a lot of "listen to your body" type talk. Much as I'd like to think that I'm good at listening to my body please consider the evidence:

Exhibit A
I had chest pain, dizziness, and nausea two miles into a gentle jog the day my symptoms started that forced me to sit down on the edge of the path. I had run to the end of a dock from my car and then back past it in the opposite direction so I was now less than a mile from my car. Did I listen to my body and walk back, or did I decide to continue on to make it up to six miles? Guess! 

Exhibit B
When chest pain and shortness of breath woke me the following night I went to the local doctor-on-call service and explained my symptoms. When I was prescribed antibiotics and steroids for an infection I knew I didn't have, I still didn't listen to my body and go across the road to the ED and instead sat in traffic on the M50 for 1.5hrs each way and walked around a factory all day most probably with multiple blood clots in my lungs. 

Exhibit C
It took five more days of chest pain before I finally went to the ED and even then I felt like I was making it up and wasting someone's time. This is at the exact same time as knowing deep down that something was terribly wrong!  

All of the above I submit as evidence that although I once considered myself really good at listening to my body, this is no longer the case. So how then, do I begin to reclaim my fitness without overdoing it?

Two days ago I walked three miles slowly with my daughter. I felt fine during and after it, but then had a terrible night and was convinced I had a new clot.
Yesterday I did nothing, partially to do with having two visitors and partially to do with the fact that it rained cats and dogs all day.
Today I again walked three miles with my daughter. This time I took a break at the halfway point to catch my breath and really pulled back on the uphill when I started to feel some chest discomfort. Is this listening to my body? When does that turn into weakness?
As far as running is concerned, I don't think I will try until the chest pain at rest has resolved and until I get a CT scan of my pelvis and abdomen as I want to know that there isn't anything else lurking in there before I shake everything around too much.
Tomorrow? Four miles walking maybe?

VTE, PE, DVT and treatment myths

*Disclaimer: All subjects discussed are from the perspective of my own experience as a healthcare professional, and now as a patient. These are my individual experiences and opinions and not intended as medical advice.

So what is pulmonary embolism (PE)? 
A PE occurs when a blood clot or embolism breaks off from somewhere within the veins, travels through one side of the heart, and lodges in the blood vessels of the lungs. These clots can be small and block off a small area of the blood supply, or large and/or numerous, shutting down much of the blood flow. This is a problem as we humans need oxygen to reach every tissue in our bodies in order to survive!
PE is usually as a result of a deep venous thrombosis (DVT) forming somewhere in the veins, usually the legs, but possibly the arms, or somewhere within the abdomen or pelvis. As the flow in the veins is in general from the outermost tips back towards the heart, then a clot breaking off will travel through the right chambers of the heart and into the network of vessels in the lungs where they lodge. The combined disease encompassing PE and DVT is called venous thromboembolism (VTE)

What causes VTE
There are known risk factors for VTE including surgery, trauma, immobilisation, cancer, pregnancy, long-haul flights as well as a genetic predisposition to clotting. The hormone oestrogen can also play a part in some embolic events and hormonal contraceptives or hormone replacement therapy (HRT) can be implicated if no other cause can be found - of note: pregnancy has a far higher risk for VTE than either hormonal contraceptives or HRT.

Current treatment
The current best practice is immediate anticoagulation (blood thinners) in order to prevent further clotting, to maximise flow around the clot and to allow the body to reabsorb the clot over a period of months and years. There are more invasive treatments available to directly dissolve and remove the clot using medication delivered over a catheter, however, this is not generally the first line of treatment and is still largely experimental.

Treatment myths
Unfortunately, during my admission, I was informed by junior doctors on several occasions that the treatment would dissolve my PE. At this point, I was receiving low molecular weight heparin. I am now on a direct oral anticoagulant (DOAC.) While both are effective at preventing more clots, they do not dissolve any but the smallest clots, and this is not a claim made by the drug companies (and believe me they would if they could!)
Clot, whether it is in the legs or the lungs is reabsorbed over time (or not) by the body. Sometimes it resolves fully, other times the body creates channels through the clot preserving some or all function if not form, and yet other times the clot becomes hard and impervious, stable but visible decades later.
By the way, none of the above is a criticism of junior doctors. I don't think they came about their incorrect information off their own bat. They are either not being informed or being given incorrect information.

My healthcare experience
I spent seventeen years in healthcare, working predominantly in imaging of the veins and arteries. Part of my job was imaging DVT, both for initial diagnosis, and then to monitor progress during treatment. This was where it frequently became obvious that patients were being told that their treatment was going to, or already had, dissolved their clot. How shocked they then were when there was still obvious clot in their veins, as expected when they returned for a follow-up scan. So are doctors genuinely unaware of the efficacy of the treatments they are administering or do they think patients just don't want to know?