We Can Adjust The Sails

It’s alarming how quickly health can change.  Despite living with Pulmonary Hypertension for five years now, it still shocks me that my body can dive down so suddenly and unexpectedly.  Wellness the days before, a packed calendar ahead, feeling good… until abruptly I don’t.  It’s happened again!  My body is having a downer.

I hate going to A&E.  Hate it.  After ending up there a few times when first diagnosed, I now try my hardest to avoid that frenzied and scary part of the hospital.  Although the doctors and nurses are always lovely and caring, the environment is challenging.  It’s intimidating and overwhelming and exhausting.  Drunk people swearing and shouting in the bed next door, and ambulance men rushing bloodied people past on stretchers.  Soap opera story lines being dramatically played out in the over-crowded waiting room, and neighbours spluttering and spraying their germs.  Doctors rushing around, nurses rushing around, porters rushing me around.  Patients screaming, patients shouting, patients crying.  Alarms screeching and machines bleeping, and bright fluorescent lights shining on everything.  The noises hammer my head, the lights keep me awake, the continual stimuli steals my energy.  It is too much to cope with when fatigued and unwell.  It makes me feel worse… every time.  And the generalist doctors are always baffled by my condition- they google it, ask me questions (I always know more than them)- before eventually calling up my PH specialist.  It takes many days to recover from a trip to A&E, more if I’ve unluckily picked up some of the fellow patients’ germs!

So I’ve learnt to avoid a trip to the emergency room if I can.  When I’m unwell, I self monitor as much as possible- oxygen saturation, blood pressure, heart rate, lung peak flow, temperature, weight.  I put up with the scary moments- the heart pains and the breathing difficulties and the coma body.  And I wait it out.  Nowadays when I become poorly, I’ll only seek help if it’s lasted longer than a few weeks or I’ve had new extreme symptoms.  I can’t rush to A&E every time I feel too breathless to move, or have a jumping heart, or ridiculously low oxygen levels.  I can’t rush to A&E when other ‘normal’ people would… ’cause I know they probably can’t help me, and will instead leave me feeling worse.   So instead I force myself to be brave, to not panic, to put up with it.  I remind myself of how many times I’ve felt this ill before, and yet survived.  I make myself think only of getting through the next hour, nothing more.  And I have complete faith in my wonderful body, trusting that it will sort itself out. 🙂  If there is no improvement after a few weeks, then I bypass the emergency room and contact my PH team myself.  Like I say, I do my best to avoid A&E these days!  I’ve not stepped foot in one for four years!    

I’ve been unwell for the past four weeks.  But it’s been odd.  Unlike illnesses before, this has been inconsistent.  A month of feeling not quite right and four long episodes of feeling really awful.  I’ve been living a metaphorical bungee jump: big down, little down, big down, little down… but always below where I started.  Some of my symptoms are reminiscent of previous blips; lower oxygen saturation particularly with activity, higher heart rate, regular heart palpitations, blue lips and fingers, disrupted sleep, daily nausea, being too weak to clench a fist, constant fatigue.  But others are new for me; incidents of very low heart rate (47bpm- my normal is 80) which leave me too weak to move a muscle, an almost constant bright red flushed face, and supplementary oxygen taking longer to increase my body’s saturation levels (82% on 4L of oxygen whilst standing up).  But most terrifying are the horrid episodes of tiny tiny lungs!  I’m left shallow breathing with only the top of my lungs, and restricted in expelling air (my peak flow halves from a normal 400 l/pm to 200).  I can barely move or even talk!  Although I’ve occasionally experienced this before, it normally improves after a quick rest… yet is currently remaining for days and days.  Once again Phil has become ‘carer’ in addition to husband, PJ days have become the norm, and meet ups have been cancelled (no play day with the nephews, or hotel stay with my school friends! 😦 ).

A PJ day with Lottie

My heart rate fell to 47

Tired out…

Last week I had reached my point to seek help.  A quick GP visit turned into a long GP visit.  The panicked doctor concerned that I looked blue and red, wanted me to be urgently seen in our local hospital.  However instead of packing me off to A&E, she referred me to the Emergency Assessment Unit (EAU).  Oh what a discovery!  An emergency room only for those who’ve been sent in by a doctor.  In contrast to its noisier, busier and scarier neighbour, it was calm and quiet.  No drunken people shouting, no bloodied people on stretchers.  No staff rushing around, no alarms going off.  I had blood tests, a urine sample, a chest x-ray and ECG.  As usual, my condition was too specialized for them to be able to resolve my issue, but they were able to rule out many common problems.  Antibiotics were prescribed as I had elevated WBC and neutrophils, indicating a bacterial infection.  I declined an overnight hospital stay, but instead agreed to return the next morning to see my PH team who were by then all tucked up in bed.

First time at EAU

Waiting room

Exhausted now….

We were at the new Diagnostic Day Unit (DDU) by 9am.  What another wonderful discovery!  A quiet day ward for complex patients to rest between tests and appointments, without taking up an overnight bed.  It even had a roof garden!  My PH team- including the impressive new Head of Pulmonary Hypertension at Oxford- met me on the ward, and we talked through the problems and possible causes.  I met them again days later, after a weekend of antibiotics.  By then my breathing was feeling more normal, however my heart was still jingling around and my fatigue high.  An ECG showed my heart was tachycardic, but an Echiocardiogram showed no other problems, and my BNP level (heart failure marker) was low.  I managed to walk an amazing 410m on my Six Minute Walk Test (personal best is 450)- however I was so weak and exhausted, I was swerving and could barely control my legs.  More blood tests showed  my infection markers were reduced by then.

The roof garden at DDU

DDU

Waiting for an ECG

An echocardiogram

Wearing my mask at the hospital

The dreaded walking test

Over the past week, my fatigue levels have continued to improve, and on Halloween I actually felt vaguely normal for the first time in a month!  However my scarily tiny lungs and flushed face returned again yesterday afternoon.  That’s five episodes so far!  Thankfully I have an appointment with my Lung consultant at the Brompton hospital next week, and another with my PH team a week later; hopefully they will provide answers and a solution.  My layman’s guess is that my issues this past month are two-fold: An infection running amok around my body, and random acute hypersensitive lungs.  I’ve no idea why they’d suddenly become irritated though, or even if it can be treated.  I have my fingers crossed that it is just something simple that can be easily resolved.  I have my fingers crossed that I’ll bounce back shortly.  However there is always that tiny worry that it is actually something sinister: my heart struggling, my PVOD worsening, or a new condition developing.  There is also a worry that the new lung problem can’t be treated and is here to stay.

There’s nothing I can do now except rest up and wait.  Thank goodness for Netflix!

(Oh and after a year of dilly-dallying, this little blip has prompted me to buy a face mask!  It arrived in time for Halloween! 😉 )