Denmark! April and May 2026

 

We made it to Denmark!

I finished last time by saying that the Danish language looked challenging – in the end EVERYONE spoke fluent English and we had no need to try much Danish though I did develop a penchant for A  Stjerneskud (Shooting Star) which was a bit of a mouthful in more ways than one – this is a classic Danish luxury smørrebrød (open-faced sandwich) served on buttered bread, topped with fried and steamed whitefish (usually plaice), shrimp, asparagus, and roe. It is often garnished with lemon, dill, and a creamy dressing, making it a staple lunch dish in Denmark.  It was invented in honour of Yuri Gagarin when he visited Denmark – when I told one young waiter this he looked blank – not because he didn’t understand my English but because he’d never hear of Gagarin, the first man in Space!!  I had this dish four times in 11 days and it was so good.

We ate tons of salmon and other fish too, though I had to go easy on the bread (delicious looking rye and pumpernickel type breads) due to the “IBS”. 

We only toured round the top half of Jutland – the bit that’s joined to Germany.  Peaceful and very lovely – fabulous beaches and even a ‘Wandering Sand dune” which is being blown across the narrow peninsular at the far North by the wind – incredible to see this white sand desert in a place which shares its latitude with Aberdeen!

On the minus side, all that fish (it’s the oils) played havoc with my HHT nosebleeds – spent an embarrassing 40 minutes dripping fast into the drain of the brand-new Aarhus library’s patio on the final day.  What a mess!

 

Once back home I found out my uterine polyps were benign and I finally got the liver scan done.

Best of all, I’m running again!  But I’m SO slow!  About 10% slower than before SCAD a year ago (and boy, was I slow before).  But, no matter, it had been 18 months with only about 9 weeks of running in there so it’s not surprising I suppose.  Plus I had the invasive Surgical Ablation (minimaze) operation seven months ago.

BUT, (and there is always a but) I put up the resistance on the Powerbreather I use to strengthen my lungs/diaphragm and the next day I could feel I had ‘upset’ my breathing muscles (intercostals, diaphragm, chest muscles etc).  Naturally, I ignored this and did a run and weights which made it feel better.  Next day I did a short row and weights and then TAUGHT A CLASS (I’ll come back to this exciting development…).  By Wednesday I was in a lot of pain and not sleeping so I (ahem) went for another run.  Not good.  It is only two days later that the pain (helped by paracetamol) is subsiding enough that I can breathe properly.

Yes! I taught what I think of as “my” class – A class for older adults with medical problems (ie myself!).  I set it up years and years ago (15?) and still have customers since then.  I was very nervous but the leisure centre kindly provided an instructor to help me out “just in case” (I think they think that I’m going to drop dead or something) which was very kind of them.  It went really well and there were lots of hugs even from people I’d never met before.  It was bit spooky actually with all those new people saying “Oh! We’ve heard so much about you!”!!!!!  I hope I wasn’t too much of a disappointment!  It was so nice to return to a normal life.  As I’ve said before, an exciting life is not always a good thing!!

I’ve now had some blood tests to do with the bloating as the GP was not convinced it is IBS and wanted to rule out some other causes first (most scary one is ovarian cancer).  I have also booked to see a private dietician too. 

For the last 21 days or so I have been so tired, but I am not sleeping well.  However, one blood test now shows my iron is low and my “saturation” is only 7%.  For HHT patients we need to try and keep our levels up as they can drop so quickly after lots of bleeds which I have been having lately.  In fact, this saturation figure should be 20% – 50% (how much iron the red blood cells are carrying) – so no wonder I am struggling with tiredness, feeling cold and running so slowly.

I’ve been having 2 – 3 bleeds per day, though luckily not long lasting.  A few days ago the bleeds just did not ever feel stable even after they stopped.   Then the penny dropped – they had been made even worse by the peppermint oil capsules (oil again!) that the GP prescribed to see if it would help my “IBS”.  Oh for goodness sake!!  Everything works against everything else.  Not only am I cold, tired and fed-up, but the low iron puts stress on the heart which is probably why HHters get more Afib than others.  I could scream sometimes!!  I have now stopped those and asked Papworth to take me off the anticoagulants too, which they agreed since I am in NSR, I am low risk and I have the Atri-clip.

They also removed from the ablation waiting list (which came as a surprise as I had asked them to do that 6-weeks ago).  This could have been a problem if I had to claim on my travel insurance since I had said that I was on no waiting list!

The ovarian test came back negative as did everything else except Vitamin D which is in the “insufficient” bracket.  This is not a great surprise as it is a common problem in the UK plus, I always have to be smothered with Factor 50 due to previous skin cancer and sun-sensitivity caused by the Amiodarone drug that is keeping me in normal heart rhythm.  Symptoms of Vit D insufficiency  include tiredness, heavy legs and poor sleep!  So, I think I have a ‘double whammy’ with the low iron and the low Vitamin D.  No wonder I don’t feel right. 

In my opinion, I think some of this has been caused by following the FODMAPS anti-IBS diet since January.  I am just eating so few vegetables, seeds, nuts and fruit when compared to before plus I am having no beans or lentils which I used to eat a lot of – not being keen on much meat.  I think that diet has led to low iron and the low Vit D, in short.  Not helped of course by the SPF 50 sun lotion and the nosebleeds.

The bleeds have got so bad that I have now contacted my hospital in London to ask for more laser treatment (gruesome.  General anaesthetic then two weeks of recovery).

There was also blood in my ‘poo test’.  Again, no great surprise given the amount I swallow during a bad nosebleed and when it trickles for hours as it sometimes does.  I was referred via the urgent cancer pathway and seen yesterday by the Colo-rectal specialist. 

Two days prior to that I went back into Atrial Flutter (?) despite still being on amiodarone so now I am back on the ablation waiting list (but at the bottom) and back on the anticoagulants.  I was devastated, but I went for a run anyway thinking I could shuffle and walk.  TBH it was not much worse than usual and then I did some weight training.  It really cheered me up but best of all, I was back in proper rhythm after three hours!  So relieved.  I’d had a busy few days of eating badly and very bad “IBS”; plus I drank some alcohol and I got dehydrated.  All possible triggers.

Anyway, back to the Colo-rectal clinic - I had expected him to say the number was too low to warrant investigation (Should be under 10, mine was 12.5 – no panic usually until it gets over 100/400 – depending who you ask!

But no!  He suggested a colonoscopy AND an endoscopy – so up the bum and down the throat (two different probes, obviously 😊 ) – these will be done on the same day – arghghghghghg!

 

Today I had an annual routine phone appointment with the Gastroenterologist – he keeps an eye on my blood levels to make sure I’m not bleeding in the gut as HHTers often do.  It’s usually a few minutes but today I told him about the lethargy, the misery, the struggle to do much and the nosebleeds and yesterday’s plans.  He agreed with it all AND said he would like me to have an IRON TRANSFUSION!!!!  So, he took it far more seriously than my GP.  Perhaps I have found someone who actually KNOWS ABOUT HHT!!!!!

Honestly, I’m normally a cheery person with a black sense of humour but at the moment I am in despair.  I’m tired but not sleepy.  I feel like crying a lot.  I can’t eat without pain.  I gave up alcohol and coffee long ago but now I cannot even have treats like cakes and neither can I bake which I liked to do.  My legs are so heavy it is as if I am wearing ankle weights or have cycled 50 miles the day before without training.  My running is getting slower and slower and now I have a colonoscopy, endoscopy and iron transfusion imminent plus a nose op for the nosebleeds and an ablation coming down the track.  I feel crushed.  I feel like my life will be like this forever – one thing after another.  Blooming HHT!

To cap it all we finally decided to go away for half-term only to discover that our flights are now sold out or twice the price of a week ago – bloody ol’ twisters as my grandad would say!

Toodle-oh peeps.  Ill try to be more cheerful next time ☹ but I did promise no Toxic Positivity!!!!

Happy Heartbeats everyone.  Check back soon or subscribe to get a reminder when new Misery Memoir is published!!