Flying / anxiety / stress / Insurance / Critically sick brother

[Slosh]

Hi - I have posted before about my trips to South Africa and Australia. Really need wise advice now.

I have had such stress around this and the travel insurance. Some tests were not back (Thankfully now are). But I had a referral for Mast Cell Activation Syndrome sent to Guys and St Thomas on the 30th March - they have never received it.

With insurance any outstanding investigations / tests - they cannot insure you. I asked my Gp practice to remove it - they can’t - but will put a note that I no longer want to pursue this. Not sure if that will be ok.

I cannot go to South Africa and risk having no medical cover - the state hospitals are horrendous!

Waiting to speak to my GP.

I was to fly yesterday - but my fit to fly PCR came back positive! Took test Thursday - result on Friday last week. I don’t have any symptoms of Covid and all the lateral flow tests that I’ve done since have been negative. So I think it just picked up the fragments from when I had Covid in March. I should get a recovery certificate on Covid19 app by Wednesday and will also do a rapid Antigen test on Wednesday. South Africa requires this within a 48 hour window before you fly.

I need to Fly - not only is this a long planned trip but my younger brother is in ICU in South Africa and is critical. Yesterday they did not expect him to live through the day(Pneumonia and multiple cardiac arrests) He has stabilised a bit and we are hoping that he can be airlifted by helicopter to a bigger hospital with a dedicated cardiac unit.

So the question is - would it be worth taking a little extra Pred? On 7mg currently.

If so how much and for how long?

I am not thinking straight or clearly.

Nervous to fly anyway since I had the tachycardia event when I had Covid.

Thank you!

[DorsetLady PMRGCAuk volunteer]

Sorry sorry to hear about all of this ….

Think you need to contact insurance company and discuss doctors letter - then you’ll know if you are covered..

And fingers crossed for covid tests being negative this week…

Probably a good idea to increase Pred perhaps try 10mg until you have got things sorted and (hopefully) have been able to get to SA and see brother.

Once all that has happened you can think about reducing -but honestly I wouldn’t be considering that at the moment —-if you need to stay at higher dose you need to.

When you get to Australia and things have settled down think about then.

Best wishes to you and brother 🌸

[Slosh in reply to DorsetLady]

Thank you. For advice.

My brother passed away at 10am today.

[DorsetLady PMRGCAuk volunteer in reply to Slosh]

Oh, so sorry to hear that…my commiserations..💕

[Slosh in reply to DorsetLady]

Thank you

[Slosh in reply to DorsetLady]

Thanks for your advice. So if I stay on 10mg for a month do I start the slow taper from scratch?

[DorsetLady PMRGCAuk volunteer in reply to Slosh]

You could probably go back down a bit quicker - say in 1mg steps for a couple of weeks each time. You just have to see how it goes…

[Slosh in reply to DorsetLady]

Thank you so much

[SnazzyD]

What a nightmare. Surely the insurance company can insure you but just not for the pre-existing and pending issues. At least if you had an accident or became ill with something else, you’d get some cover. I suspect that even if the doc removed the referral and you didn’t tell the insurers, the fact that you were referred means a potential diagnosis. If somehow found out when they access records, might void the policy even though you might not be claiming for that. Agree with DL, if you increase it needs to be about 10mg. This hopefully will get you out of the low adrenal zone. Is your doctor happy with that kind of increase?

[Slosh in reply to SnazzyD]

Thank you - yes will speak to doctor.

Problem is from what I understand they will not insure me AT ALL if there is any outstanding diagnosis.

[Slosh in reply to SnazzyD]

PS my brother passed away at 10am

[SnazzyD in reply to Slosh]

So sorry

[Slosh in reply to SnazzyD]

Insurance sorted

[SnazzyD in reply to Slosh]

Hooray! What did you manage to get in the end? Don’t feel you have to reply if your head is too elsewhere.

[Slosh in reply to SnazzyD]

Seems like full cover. Was on the phone for ages. I had to add like a left ventricular insufficiency - my ejection fraction is45-50% 😢 and normal is 55%.

It’s all recorded and I noted down persons name, the time and date.

Xx

[Slosh in reply to SnazzyD]

Insurance sorted

[PMRpro Ambassador]

So so sorry - nothing comes alone does it? Hugs.

I think you may well need more pred - this sort of stress has similar effects to what Sick Day Rules cover.

I can't really help - I know what I would do but that isn't really relevant. As DL says, I think you - for your own good - have to start with the insurance cover. No insurance - no travel in my book I'm afraid. This isn't going to be sorted in a few hours is it.

[Slosh in reply to PMRpro]

I’ve already got cover - but did not include the Mast Cell Activation because the letter was never received and I decided to not pursue it further but yes I can see how that would be a problem.

I will phone the insurance company and speak to them after speaking to my doctor.

PS my brother passed away at 10am.

All my siblings are flying to SA to be there.

[PMRpro Ambassador in reply to Slosh]

So sorry, hugs. And you want to be with them don't you?

[Slosh in reply to PMRpro]

Yes.

[Slosh in reply to PMRpro]

Insurance sorted.

[DorsetLady PMRGCAuk volunteer in reply to Slosh]

Good

[PMRpro Ambassador in reply to Slosh]

Great - when do you go?

[Slosh in reply to PMRpro]

This Thursday.

[PMRpro Ambassador in reply to Slosh]

Group hugs when you get there xxxx

[Slosh in reply to PMRpro]

Absolutely!

[Slosh]

I leave tomorrow (if Antigen Test is negative). And I just realised that if I go up to 10mg a day for the full trip - I may not have enough Prednisolone.

I am in South Africa until 20th July and then fly to Australia and am there until 7th September.

A bit frantic all round at the moment - struggling to think methodically.

Can I just go up to 10mg for about a week to ten days and come down again?

And then up again for around the time for the flight to Australia and down again after a week or so?

I could get Cortisone in SA but my body reacts so badly to meds / excipients due to the Mast Cell issues.

[DorsetLady PMRGCAuk volunteer in reply to Slosh]

Yes that sounds okay..hope all goes according plan.

[Slosh in reply to DorsetLady]

Thank you.

[PMRpro Ambassador in reply to Slosh]

Try explaining to a pharmacy that you have unexpectedly to go away and haven't enough pred - they SHOULD give you an extra pack as you can't stop taking it suddenly ...

[Slosh in reply to PMRpro]

Thanks will try.

[Slosh in reply to PMRpro]

I do have quite a few extra - but in mostly the 1mg.

[SheffieldJane]

I want to send my condolences to you. You are going through such challenges. 🌺

[Slosh in reply to SheffieldJane]

Thank you so much