What’s a few more bruises?

Today was a special day. It was the first day that I could shower after my surgery and let the water help take the dressing off. It felt good!!

However, without the dressing my bruises are somewhat vivid which added to those from the IV line on my wrist leave me rather a multitude of colours.

Bruises have always fascinated me. Probably as I usually have a few that I’m not quite sure how I acquired them and I find it interesting to see them change colour and fade with time.

My current bruises are deep and will last a while. They’re at the black and purple stage with a hint of yellow just starting to appear in places.

These bruises will fade with time, leaving just the surgical scar to remember the surgery by. A scar I will wear with honour and thanks to all the professionals concerned.

One more rabbit hole dealt with…..

On the Easter weekend I took the decision not to blog for a few weeks. My health had gone down another rabbit hole and I was finding it overwhelming to deal with. Now that I’m through the worse of the rabbit hole it’s time to start blogging again.

Yesterday I had surgery. The thought of this surgery terrified me. I am allergic to general anesthesia and have come very close to death several times in the past thanks to it. However, I have to give a huge shout out to my surgical team. My surgeon and anesthetist took my concerns seriously and agreed to operate using just local anesthesia and sedation. As long as I could tolerate it. If I couldn’t then they’d have to put me under but would use different drugs than usual in an effort to stop the adverse reactions I’ve had in the past.

Apparently, I’m a superstar! I not only tolerated it but I tolerated it under such mild sedation I was allowed to go home the same day, rather than stay overnight as we’d been expecting that I’d need to do.

Today, I’m sore and morphine is my friend. However, aside from the surgical site itself I feel pretty good.

I now have to wait three weeks for the pathology results of the mass that was removed. All along the belief has been that it’s probably benign, and in fact when biopsied last year it was found to be benign then. However, since then the mass grew and changed in ways that made it imperative that it was removed.

If it’s not benign and I need to deal with radiation therapy or chemotherapy then I’m ready for it. Nothing is as scary as the thought of the surgery itself. Now that I’ve survived that I can deal with anything.

It was a very strange few weeks recently as part of me was completely convinced that I wasn’t going to survive the surgery; that I’d have an allergic reaction and die. It was an odd position to be in.

Yet once I arrived for the surgery itself and it became clear how much work the day surgery team had done to be ready for me; setting up a completely latex free operating theater just for me; making sure everybody knew at every handover that I have multiple allergies, was absent my service dog, and that I’m deaf; I felt more optimistic.

So this is a HUGE shout out to the day surgery team at my local hospital. They made a terrifying experience as positive as it could possibly be and made me feel validated and understood throughout.

Now I just have to take it easy for a while and let everything heal. One more scar for my collection!

Why do surgical procedures look so interesting until you’re contemplating being the patient?

As many of you will know I’ve been suffering with breathing difficulties since May. That was when I experienced a near fatal anaphylaxis. Since then I have never quite recovered and have now been housebound since the end of June.

A number of different diagnoses have been suggested but none of my doctors have really seemed convinced of any of them. It seems to have been more a case of ruling things out and if we still can’t find a reason we’ll call it X.

So this week I was finally down to a low enough dose of steroids, and doing well enough (relatively) to undergo spirometry testing. This is a fairly simple test that measures how well your lungs are working. In my case, once again I got some odd – that is atypical results.

The good news is that I was actually able to complete the tests on this occasion. Last time I was so out of breath that I couldn’t even manage the testing. So there is some improvement, which is really good as we’ve also been reducing my medications very slowly after the last month.

So I saw my Respirologist today to follow-up from these tests. He’s not as convinced as the Allergist was that I’m suffering with RADS (Reactive Airways Dysfunction Syndrome) though he’s not ruling it out either.

So he’s increased one medication, added another and is having me do a sleep study.

That made me laugh – I’m pretty sure that you’re meant to sleep during a sleep study.

Hmm not sure I can remember the last time I slept for than a couple of hours at night.

I’m also staying on steroids – the low dose I’ve just reached – for the time being.

Then he suggested that it might be time for a referral for a second opinion to a tertiary care centre. In this case that means Hamilton (an 8 hour drive away). I’ll deal with that part of it when, and if, I have to.

What’s being suggested is that I might benefit from bronchial thermoplasty. To quote the Mayo Clinic: bronchial thermoplasty heats the insides of the airways in the lungs with an electrode, reducing the smooth muscle inside the airways. This limits the ability of the airways to tighten, making breathing easier and possibly reducing asthma attacks.

Doesn’t that sound cool and really clever? So of course I looked into it further. It’s done over three outpatient appointments, under sedation, each appointment three weeks apart as you need a separate treatment for each of the right and left lower lobe and one for both upper lobes of the lungs.

It’s fascinating. I actually watched a video of the lungs being treated this way. It’s really interesting. What an incredible idea!

Then I really started to think about it.

They basically want to put a catheter down my throat (0r nose) and heat (sear) my lungs so that they can’t constrict as much any more. ┬áIn the hopes that my lungs will become less reactive and the asthma component of my condition will be alleviated.

The benefits can last from 1-5 years, and it may need repeating as a consequence, and initially breathing is likely to be worse for a short period.

No surprises there – sedating anybody and putting a catheter into their lungs is likely to cause breathing issues for a little while!

You know what? I know just how sick I am and how frustrated I am with not breathing easily that this actually sounds reasonable.

Even trying to work out how to do what would likely be 4 road-trips to Hamilton over 3 months sounds plausible. I suspect that each trip might take me a few days as I can’t see me being able to do an 8 hour drive in one day just now. But I’ll deal with that when I need to.

For right now I’ll try the new medication regime and do the sleep study. Maybe there’ll be an answer there and I won’t need to do this.

In the meantime I’m going to stay away from looking up more information as it soon moves from being really interesting and fascinating, to being really quite scary, when I put myself in the patient’s position.

A fact that I hope my doctors remember! I’m a little tired of being the ‘interesting’ case and would really like to get to the point of being the case study that they write about and present at conferences.

The interesting patient that got well!