Coronavirus

Hi Lucy, the advice I have always been given has never changed....... “You will always be open to infections and the one place you will get them is on a long flight”.

Regardless of this or any other bug it’s all about controlling what you come in contact with.

Some folks can do long flight with no problems, others just catch bugs - phone your SCN and get their take on it....... have you been able to get good insurance for the USA?

Hi Lucy

As Mike says it is always a risk when on a flight that you may catch a cold or something else but the reality is if your immune system is running OK or being supplemented with IG's then it shouldn't be a problem. Yes there is a risk of corona virus around the world but the USA currently would be a safe bet compared with Asia.

I did a short haul flight to Greece 10 weeks post SCT and then long haul to Australia at 11 months with no adverse effects.. perhaps I was just lucky but I have continued to travel every year both short and log haul. My immune system is still getting back to full strength (almost 7 years post SCT) so I take IGs at home. I had a bit of a cold after flying back from France a couple of weeks ago but that seems normal.

If you are concerned about the flight wear a face mask and sunglasses. Whilst this wont stop some viruses it does stop you touching your mouth and eyes with your hands which is the main cause of viral and bacterial transmissions. 

Hi Lucy,

It is a concern, of course; but you have to make logical and informed choices I think, frequent hand washing especially before you touch face/eyes etc. Plus think carefully about where you’re travelling to. 

it’s making daughter delay her decision as to whether or not to go to the International Trombone Festival which is in Japan this year! (She’s on the staff). She hasn’t booked flights and the way it’s going, may well not want to go at all. That’s ok, although she would love to go normally the risk (for her) is not a small one as she does travel a lot anyway. 

She’s unfortunate in that she’s barely getting better after a cold which led to a chest infection plus sinusitis after her aborted solo tour of the USA early last month where she totally lost her voice! Two courses of different antibiotics, lots of rest, fluids etc she’s at last improved. Her untreated immune levels are less than 1, whereas low end of normal is 6. She’s at long last well enough to have had immunoglobulins yesterday! Her allo was 2011. 

Hugs xxx

Thanks for the replies.

I've travelled quite a lot post transplant and tried to reduce infection risks as much as I can but if this Coronavirus means certain death if I catch it then I'm not willing to expose myself unnecessarily! I'm probably more concerned about the airport than the flight as you say Paul I'm going in the opposite direction to Asia.

From what I've read it's people with weakened immune systems that are at high risk which I assume I still come under that umbrella. I don't take any IG's I'm just on 500mg Amoxicillin daily.

I will drop our late effects nurse a line and see if they have any useful advice. It would be helpful if the haematologists could give us info when these sorts of events happen but maybe there is too much disparity between patients.

Has anyone travelled to somewhere with Malaria? I was told that it's fine to go to countries with Malaria as long as you don't get Malaria (not very helpful!) I have family in Tanzania who are desperate for me and my kids to visit but I don't think I'd be able to relax and enjoy myself knowing the potential risk. I'm a mosquito magnet which doesn't help! It also rules out a lot of other countries to visit.

Thanks in advance,

Lucy

Thanks Moomy,

It's encouraging to hear that your daughter is travelling a lot and has in the main part coped ok. I had Norovirus before Christmas which lasted 6 days but only affected my friends overnight! It spread like wild fire through my children's school. But touch wood that's the first temperature I've had in a year.

I'm travelling alone with my two children which I suppose is my main concern, if I get really ill there is no contingency for them but that is a risk I always have to take when travelling with them alone. If I didn't we'd never leave the house!

I don't know about you Mike but I am now overdue an appointment at the Beatson by a year. I've just had my Late Effects over the phone appointment through, it's in December!! So that'll be 2 years since my last appointment (I'm supposed to go every 6 months). I'm trying to take it as a compliment that I'm well enough they don't need to see me but it's nice to touch base with them and get some reassurance that everything's as it should be. Every time I go to the GP when I'm mildly ill it feels like they roll their eyes at me! Not her again... I'd rather that though than go to A&E every time which is what I think we're supposed to do.

Lucy

Meant to add this in earlier Mike,

I've always used Insurance With for travel insurance, I feel better declaring all my ailments and have peace of mind there will be a no quibbles cover and their prices are competitive with the bigger insurance companies.

https://www.insurancewith.com

Lucy

Hi again Lucy,

that’s the company daughter uses too. She was once too unwell to go away and they paid up without any quibble at all, she has an annual policy. 

Hugs xxx

Hi again Lucy,

My second Allo was 21 October 2015 and had the ever increasing length of time between appointments until I was officially discharged by Dr P on 18 June 2018 with no scheduled further appointments.

She said “......go live your new life Mike and try and not think about us and what you have been through..... but you know how to get on contact with us”

I do see my Inverness Macmillan Specialist Nurse Consultant regularly as I work on a project that we have been developing. She is actually seeing more and more folks being discharged quickly post SCT as the Glasgow team are convinced that it helps the post treatment recovery.

I do have my Late Effects Video Conference booked for next month so getting all my bloods and stuff done in a few weeks but expect this will be the last time I will talk with Glasgow

I do have a few questions about stuff like MMR and other vaccines to unpack as we want visit a children’s home we have worked in before in Central America...... but that’s it.

I do check in with my GP every 3-4 months and I do have emergency general antibiotics to take in the event of chest infections as I do have them a lot compounded by my Asbestosis....... infect I started a box this morning as I have a cough that has started to go deeper so we will see what next week says.

Having had a few blue light visits to A&E I are not slow in calling 111 and getting fast tracked. The main reason being that when I had Melphalan I developed heart A Fib and this comes back when I have bad infections so we can’t take the chance.

I was able to get good insurance last year so this is now not an issue but it is the Airports that are an issue. We fly to Gatwick often to go to our daughters in Surrey so we tend to find a corner in a cafe or restaurant and drink lots of coffee until it’s time to board........ and yes a hanky with Olbas and big scarf for the flight. 

I do hope you can get away as it’s so good for the well-being.

As moomy once said “SCT the gift that keeps on giving”

Hi Mike,

Thanks, that's good to know. They never actually said I was discharged, I felt like I was just left hanging with a "you'll get an appointment in the post" which I never got.

I'm sorry to hear you have so many post SCT side effects, I have been extremely lucky in that respect. We must have been in the Beatson at the same time as I had my first SCT in October 2015.

Thanks all for your input and advice and so quickly!

Lucy

Lucy, from the 23rd Sep to the 13th Oct we were living in The Pond Hotel while I was having my 30 zaps of radiotherapy.

Then went into the SCT Unit on the 14th Oct had SCT on the 21st Oct then home on the 10th November.

It’s all getting to be a distant memory now but I don’t remember much about most of the time in the Unit and every now and then I catch another memory that my wife tells me.

Yes I have had a few issues but looking at the big picture in all this I should not be around so The Beatson saved my life xx