Wednesday, March 25, 2020

Getting tested for COVID-19

Well, it's been a long time since my last update. Last I left you we were in Belgium when we decided the Coronavirus was putting an end to our bacteriophage efforts.

I was no longer coughing blood since I started taking the Ukrainian over the counter phages which had pseudomonas aeruginosa as one of their targeted bacteria.

We went to the Netherlands where we stayed with friends, and when the threat became too big we eventually booked an expensive hotel in my hometown of Noordwijk, seaside area of the Netherlands. We felt safe and secure for 3 nights and then decided to drive to the middle of Holland where there are lots of heaths and forests and we had another two nights in nature away from crowds before driving to Amsterdam for the final two nights prior to our flight home. In Amsterdam, we had a superb Hotel booked and paid for by sympathetic friends (!) where they served room service breakfast as by now cafes and restaurants had closed. Cindy and I rented bicycles and rode around a pretty empty Amsterdam, visiting many museums in quick succession - it's amazing how quickly you can ride past a museum if you don't go inside to look... Cindy managed to twist her ankle as she rushed off the road to make way for a police car with sirens. This was in front of the Torture Museum of all places.

Before our flight, we found the Amsterdam Bos and the Olympic rowing course where we walked for many kilometres in preparation for the long flight home.

Amsterdam airport, Schiphol, was very empty and the security still had to frisk me at very close & personal range not wearing a mask either. Pretty outraged I checked with his supervisor who said he was following protocol and that she would be doing the same in 15 minutes. I felt seriously at risk because he would have surely been infected in the past few days and could now be passing it on to anybody he was frisking like he frisked me. Apart from that, it wasn't too bad in Amsterdam and we got onto an empty flight to Abu Dhabi.

In Abu Dhabi, we went to a lounge to which one could pay for access and there I did my nebulising. The hundred-dollar access fee had scared most people and it was also in a disused terminal of the airport hence we felt very safe there. The $100 fee to get in included the towel for the shower a toothbrush a terrible razor and a very very limited choice of food and drinks, in fact not even a choice really - see below image. But we were safe.

The Abu Dhabi Sydney flight was jam-packed full with Australians returning, and arrived in Sydney at 6 in the morning we all got our flyer about 14-day self-isolation as we exited the plane. But clearly, self-isolation was not in effect until you actually got home. Forget about social distancing when exiting a crowded plane or going through customs it seems. Once at the domestic terminals where it was fairly quiet we faced cancelled and delayed flights as we made our way from Sydney to Melbourne to Devonport, arriving about 10 hours later. People in the queues were not keeping distance at all, staff and crew were also acting just as per normal as if there was no virus at all. Even in Devonport when a staff member asked if anybody had been overseas those half a dozen people were crowded around a small table filling in forms about their 14-day self-isolation...

Cindy and I had a car waiting for us and we drove to James Street where Ree had prepared the home for us and stocked it full of food. Ree had arranged with friends to stay at a beach house far away for the next 14 days to give Cindy and me a self-isolation place. Normally I live in a house with two or 3 others so this was great.

We arrived on Friday night and on Monday morning the mail brought me phage medicine from a Georgia contact.

Monday Cindy was also getting signs of a migraine, vomiting slight cough slight temperature and we eventually called the hotline who deemed us as not testable yet. Fortunately, within 24 hours we got a call to say that my cystic fibrosis was a deciding factor to get us tested. So on Wednesday, we drove out to the hospital with permission of the hotline.

Donning clean new clothing a fresh mask and plastic gloves and equipped with an antibacterial spray we headed outside the house. The testing clinic was pretty much empty and we were helped in a friendly and professional manner. Swabs were taken and we will be notified in a day or two they said.

In the meantime, I started taking the Georgian over the counter phage against pseudomonas aeruginosa and tonight I'm starting with an inhaled colistimethate sodium nebulizer antibiotic treatment as well. Wouldn't it be great if my lung function was better after 14 days of self-isolation with these new phage medications! The walks around the house certainly wouldn't have been enough to qualify as exercise, but it's the least I can do.

And just as an interesting note, on the flight between Sydney and Melbourne was a young family from overseas where the woman was crying in tears telling the crew to keep their distance from her. She was screaming and saying nobody is paying attention to the safe space requirements, not even the crew. The hostess was trying to offer her tea and asking her to calm down as she was screaming 'get away from me, step back'..., which the hostess was just not understanding until the husband sternly said please leave her alone. This is exactly how I felt for 12 hours, and I can assure you I am not fussy about a few inches here or there, and still regularly touch and scratch my face accidentally. If we caught the virus we caught it between Amsterdam and Devonport.

Fingers crossed we are all safe and I'll get back to you all when we get the results back.

Friday, March 13, 2020

Belgium phage impressions

Coming back from the Ukraine I managed to cough up blood at the border and again when walking back to the hotel in Krakow.

Reunited with Cindy we decided best course of action is to start this phage medicine from the Ukraine and catch the next flight to Brussels where I have Medicare reciprocal rights and can see doctors.

The security queue at Krakow was a mile long, a COVID19 smorgasbord where we tried to maintain distance between people... Well,... Anyways, we got to Brussels via Stockholm and a few hours delay, walked to our AirBnB near the airport and settled in and made an appointment with a local GP for the next day.

The GP and a pharmacist we spoke to had hardly heard about bacteriophages despite the new laws that say a GP can now refer to a pharmacist for Magistral Phage Preparations etc. Google that! Not a good sign. The doctor did give me a referral to a specialist.

Armed with the referral we caught bus to the Queen Astrid Military Hospital, the centre of bacteriophage studies in Belgium.

After a bit of a search in the hospital we found the team and a member took the time to speak to me. She made it clear that the legal  infrastructure may be in place in Belgium, as it is in Poland, but without major education campaigns for doctors (think pharmaceutical funded symposiums for doctors at the Gold Coast where they are sure to go to) and a major expansion in phage facilities and phage research not much is likely to happen. So as it is the team is poorly funded and has to choose carefully who to treat with the limited phage collection they have. This means serious and desperate cases with a good phage prognosis get priority and walking wounded like myself are not likely to get picked.

In the days following I did get a form for my doctors to complete but it was pretty clear I was not going to be eligible, especially given my location on the other side of the world. It is not a one shot treatment, phages are a program which requires monitoring and phage adjustments in most cases taking months.  I was not going to find people  like myself who were getting phage treatment as antibiotics were causing more sideeffects than benefits, people who prefered to try phages as a choice rather than desperacy. Mind you I'm pretty desperate with 38% lung function for the past X years and an infection that will not go away!

Other than that the unit was only a research unit and of course could not give treatment for my issues at hand. Nor could they refer me to or even suggest a GP in Belgium who was phage aware. She did urge me to get urgent help for my coughing blood episodes.

Fortunately the Ukraine phages worked enough to settle my  infection, even though they were not specifically for my infection, but still at least were for generic pseudomonas aeruginosa infections.

Also in the mean time Italy COVID19 infections started exploding and people were getting nervous everywhere.

We decided to stop calling into medical facilities and looking for sick people. Time to head for Holland and think about going back to Australia as the flu was becoming a big news story. I emailed the airline re an earlier flight and rerouting me directly home rather than via my family in Canberra.

We went to Holland, my old country of birth. Eventually we booked into a luxury hotel in my home town as we had lost confidence in small Airbnbs and budget hotels and we are now in an expensive hotel where even here we ask them not to clean the room.

I tried to call the airline a few times but hung up after 45 minutes on hold.

We spend our time doing cold beachwalks and renting bicycles and staying out of crowds. We have a rental car and do not need to get into public transport.

In one town in Holland we ran into a shop assistant who knew about phages and had seen documentaries on it and was aware people with serious infections were just.visiting former USSR countries for treatments. We got her on tape.

Waiting for the 18th. Let's hope we don't get any flu, it is the season here ... Let's hope we get on that plane home.

Monday, March 2, 2020

Phages in The Ukraine city of Lviv

I jumped on the train to Lviv in the Ukraine. Three hours to the border, changed to a wide track train, got checked for flu symptoms by soldiers and arrived about 730pm Friday night

On my way into town I enthusiastically stopped at a few pharmacies and discovered language is a major barrier here.

Long story short, I visited about 5 pharmacies who all sold phages and phage derived lysate products. Still it seems to me it is not the most common cold, cough and diarrhoea medicine that I was expecting it to be. Perhaps this is because antibiotics for the average person would still work a lot more effectively than a commercial phage preparation. Primarily because phages need to be individually matched to infections, and a random cocktail will only work for the most common infections.

I found one person who spoke good English and he explained he gets the phage based medications and sometimes they work in a matter of days, but when they don't he goes to the doctor for antibiotics etc. This indicates that without local  phage clinics and efficient specimen pathology services individualised phage treatment (Magistral Preparations) would be difficult and hence antibiotics would be more suitable.

To really understand the situation I found the Pharmacy Museum here but the old women with their painted hair were seriously unfriendly and borderline hostile. Not interested to say or do anything. Being a functional pharmacy as well they were not interested in helping me and just took my money and pushed me  into the museum. I even asked if I could see a doctor somewhere but despite understanding the word doctor just walked away from me.

In any case, I spoke to people, bought various phage preparations, really enjoyed the overnight experience. I will read the medicine inserts and labels carefully when I'm back in Poland.

As it happened I (discreetly) coughed a fair amount of blood again, just after entering Poland whilst changing trains. Phage treatment cannot come fast enough for me. I think I need to get us to Belgium sooner rather than later and see a doctor.

The only thing I took here other than my usual meds was a nasal eucalyptus spray, which I doubt caused the bleed. I've also been doing enough walking and nebs, eating healthy and I must say I feel great with little coughing even.

After the Hemoptysis episode I took the first class train back to Krakow to avoid the crowd. Fortunately it was only a fraction more expensive. I think the reason it is not popular is because the first class wagon is old fashioned and has no power points at the seats!

The previous adventure!

Register with the Organ Donor Register

Translate this Page