After the high of summer...

 

After The Summer!

 

It was a great summer, but health issues were, as usual, hanging over me.  The doctor was due to call while I was in France but that never happened. So it was over two weeks after the “borderline anaemic” test before I got to speak to one of the GPs.

 

The conversation was difficult – he said there was no need to do anything as I was not yet anaemic.  I pointed out that I had the blood vessel disorder, Hereditary Haemorrhagic Telangiectasia, I am, on average, bleeding once per day so would be anaemic by now.  It wasn’t until I told him I could lose, in a big bleed, up to a MUG of blood that he sat and took it seriously.  He reluctantly agreed to contact the consultant who arranged the last iron infusion.

 

He seemed unconvinced that the SIBO is causing malabsorption of the iron tables (and other nutrients) too even though I explained that one iron tablet per day had previously held me in balance of blood loss and iron gain.

 

It was very frustrating and I had to be, let us say, forthright!  In fact, and ironically, I used many of the tactics I shared in my “Self advocacy” blog:

 

https://www.blogger.com/blog/post/edit/5200697355248151291/3159127606754010026

 

One tactic I did try (which works well with the different cardiology departments I  deal with) is to email my consultant directly and explain the situation – just in case the doctor didn’t do it or he took ages to do it.  Bit unorthodox but anything is worth a try.

 

At this stage, I was still able to function and managed a slow bike ride before trying to run.  I had decided, having missed so much training with all this stuff and all those holidays, that I would start running from a real basic level – run 1 min/walk 1 min 10 times.  I knew it would feel horrid – no matter how much hiking and cycling you do, a run always feels hard and alien.  But I didn’t expect it to be as bad as it was.  I could barely manage 30 secs of running and then I was almost doubled-up afterwards and even after a full minute of walking was still struggling.  In fact, even walking felt hard and made me breathless.  I’m aware that being like that is not great with my heart so I decided not to run until this is sorted out.  There is having a bad run and there is “something is seriously wrong” and this was the latter.

 

My real fear is that while I have been blaming the breathlessness on my bloated stomach (SIBO) and the anaemia, that perhaps it was actually lung toxicity from Amiodarone.  A serious side-effect, more common in people who have been on the drug over two years (me = 3.5 year!).  To be frank, I was terrified to think I may have permanently damaged myself.

 

To reassure myself I took a Peak Flow test. I own one as I like to track my cardiovascular fitness gains (and losses!) with it. I had last done this back in mid-August when I scored a healthy 470L.  To my horror, I scored 370L.  Now I was double-terrified and made an appointment to speak to a GP again.

 

I decided instead to start Nordic Walk which went well what I would call healthy breathlessness.   But then about a week after that call with the GP I went for a walk – I could scarcely put one leg in foot of the other, I felt faint and weak and whoosy.  It was horrible and, naturally, I was a way from the car. I was shattered the rest of the week.

 

Spoke to a different GP who was excellent.  He did not think it was the amiodarone but rather the anaemia caused by the HHT bleeds and the malabsorption of iron.  He said the letter to my consultant had been sent the day before but he wanted me to have an urgent blood test which I had done quickly.  I think they have to wait for me to be ‘officially’ anaemic (below 115) rather than my last reading of 117.  But, HHT patients are supposed to aim for 140!!!!

 

I am now resolved to no longer refer to HHT nosebleeds as bleeds but call them as they really are – haemorrhages.  It sounds a bit melodramatic but when I can bleed 3-4 times a day for up to 40 minutes I don’t think that “nosebleed; does it justice, sounding like a small stain on a tissue.

 

In fact, gross though it is, I measured a ‘medium’ bleed this week (so I had some science for the GP) and it was 40 ml.  Even if I usually only lose HALF of this daily, it is the equivalent of GIVING A BLOOD DONATION EVERY THREE WEEKS!! No wonder I feel cr*p!

 

I’m not coping well with this.  I feel like my heart has finally calmed down (thank you, amiodarone) and I should be fit and well – instead this HHT/SIBO/anaemia problem is making me feel awful.  It has also really effected my mood – I’m usually quite upbeat but at the moment I am very glum and subdued.  The main reason for that, I think, is that there is nothing I can do and nobody else is doing anything.  And even when they do it’ll take weeks to get the infusion and at least another two weeks to feel the benefit.  AND then, if it is like the last one, it only lasted six weeks after that.  I could scream and cry and swear.

 

I wrote all this five weeks ago and since then it has a been a real rollercoaster.  Firstly, I had an appointment with hepatology saying my liver was all mis-plumbed but working pretty well so no worries there! Hallelujah! Good news!!

 

I even dared run again and it was not quite as bad – even ordered some new orthotics from the podiatrist!! I had read via AI (!) that it is normal for HgB to go down after an iron infusion before recovering so that made me feel better and the blood tests confirmed that had happened.

 

Spoke to the private dietician re the SIBO and, although they work as well as antibiotics, she is reluctant to give me herbal remedies as they also  make nosebleeds worse and are contraindicated with blood thinners.  Luckily, I had a my appointment with the Gastroenterology doctor bought forward by two months (as a result of my email and/or my GP’s letter). 

 

I was looking forward to (NOT!) desperately trying to get him to believe the SIBO was causing me problems and asking him to send me for the SIBO test the dietician was recommending.  Luckily, I didn’t need to use any of my self-advocacy advice – in fact, I barely got a word in edgeways as the first GP had sent a letter outlining everything I had told him (so it was worth mentioning the mug of blood!) and so Gastro doctor said he would arrange it all and then prescribe antibiotics if positive.  So that was a step forward even as the bleeds were getting worse.

 

Then more bad news – my letter from hepatology showed that I had some stiffness of the liver but only a bit more than normal – BUT it casually mentioned that I had “stiffness of the heart” which apparently showed in the scan I had in hospital during THAT summer of 2025!!  Stiffness of the heart is the layperson term for “Heart Failure with preserved Ejection Fraction” (HFpEF).

 

Now my common-sense side told me it couldn’t be serious if it had been like that since 2025 and nobody had mentioned it, also that I know heart failure is a continuum from slight malfunction to serious, but just those words are enough to chill the (failing) heart!!

 

I think this period was the worse I have ever felt – mainly because I could not take control of the problem – running (my passion) was so awful, my stomach was painful a lot of the time despite now trying the low-sulphur diet and I was worried about my lungs being affected by amiodarone.  I was absolutely in despair.

 

When I saw the local cardiologist for my regular yearly check-up he explained all about HFpEF in great detail (he is very enthusiastic) and said it could be the reason I can’t run – he didn’t think it was the amiodarone but was going to send me for chest x-ray and blood tests which were done straight away – he would also refer me to the respiratory clinic!!! 

 

As an aside, I don’t think there is a clinic I have not been in this year!  Except Maternity!!!!  Gynaecology, gastrology, hepatology, cardiology (three different hospitals!), haematology plus GP and dietician.  No wonder the NHS is bankrupt!!!!

 

Felt even worse after that.  Even cried a few times and was a ‘mare to my dear other half.  I felt like life was over and just could not snap out of it.

 

The advice, of course, for HFpEF is:

·         Be a healthy weight

·         Eat a healthy diet

·         Exercise

·         Don’t smoke

·         Avoid alcohol

 

FFS!! I do all this already!!!  But it seems Afib begets Heart Failure and HHT begets Afib and SCAD and the drugs post-Minimaze begat SIBO.  So, it’s all one unholy tangle related back to the HHT.  Argh!!

 

On the plus side – there is always a plus side somewhere – though I couldn’t really run I could still walk albeit a bit breathless at times.  We had previously finished the Norfolk Coast Path but then when the England Coast Path was created the missing bit from Sutton Bridge, Lincolnshire to Hunstanton was opened and so we HAD to do that.  It is remote, long and nowhere to get sustenance.  On day 1 we walked from Kings Lynn to Hunstanton – meant to be 17.7 miles – clocked in at over 19!  Some people do this for fun but for us it was more of a hideous challenge.  Bus back to Lynn and then another 1.7 miles back to our hotel (special cheap rate Premier Inn on outskirts).  We were absolutely done-in.  Ate at the restaurant and slept for over 9.5 hours!!

 

Next day we walked the other way another 15 miles.  To our surprise 5.5 miles from Sutton Bridge we suddenly – and completely in the middle of nowhere on a dead straight sea dyke - finished the Norfolk Coast Path!!  But obviously we still had to get to Sutton Bridge.  Oh my! We were grovelling by the end, could barely put one foot in front of the other!  The body constantly sent out pain waves – Foot! Knee! Listen! Thirsty! Tired! Back! Ankle! Sleep! Shoulder! – in a desperate effort to get us to stop!! 

 

Just as we stepped (crawled!) on the actual Sutton Bridge our hourly bus flew past.  We waved at the driver but he could not stop on the bridge.  Typical.  Then we realised it had stopped at the next bus stop and was waiting for us.  OMG, running was the hardest thing I had ever done, but the kind driver waited and even dropped us off near our hotel to pick up the car!

 

Just an aside here – pedestrians are so badly catered for in these out-of-town places – the official route from Premier Inn to town required a lap around the industrial zone and then a longer walk onto a bridge shared with the A-road (not even sure there was a pavement).  Luckily, by scrambling up a muddy bank by the petrol station we popped out on the old road thus saving us mucho walking.  This, of course, was sarcastically named, the Pedestrian Entrance!!

 

My running suddenly improved as I worked hard on the diaphragmatic breathing technique – I think I have been so bloated by SIBO that I have got into the habit of chest breathing as my diaphragm is impeded by my abdomen thus making me very breathless when I run.  I hope once the SIBO is treated this will settle.

 

In the meantime, I emailed the gastro secretary to find out that the wait for an NHS SIBO test is three months!  In my experience, this means 4-5 months minimum (call me cynical…) so I have decided to have another go at the home test (you may recall I did the whole test after two days of fasting only for it to break and no results to be recorded.  Argh!)

 

I’m feeling a lot happier now – after all, I can still run a bit – I can hike – amiodarone is working for now – the breathing seems to be SIBO rather than lungs or heart – the heart failure affects a lot of people as they get older – I’m able to pay for the dietician and SIBO test – I’m looked after by the best hospital and other caring doctors – I know about HHT and how to seek help – I’m a lucky girl…..

 

Thank you for reading – hope I haven’t ground you down too much with my Misery Memoir!

 

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