Michæl McFarland Campbell

Back in August, I set a goal to stay consistent with my medication routine. It’s a vital part of my health journey, but, as with many routines, it’s easier planned than done! I began recording each day in a planner, tracking when I had taken each medication. Initially, I thought planning ahead would help, so I mapped out three weeks over a two-page spread. But before long, it became overwhelming. I found myself missing days, then entire weeks, and then the notebook itself eventually got misplaced.

Restarting with a simpler system

Now, as November approaches, I’m ready for a fresh start with a more streamlined setup. This time, I’m committing to tracking one week per page. The idea is to keep it simple. I will only prep the next week’s grid. I will keep it blank until the time comes. That way, I can adjust for any medication changes (which happen pretty regularly) without feeling bogged down by too much planning.

Staying accountable with support

I’ll also be sharing my progress on Instagram and Threads for accountability. Each post serves as a reminder to myself and a source of motivation, especially with any encouragement from others. Positive comments really make a difference, so feel free to cheer me on!

Tips to keep medication tracking manageable

If you’re setting up your own tracking system, here are a few ideas that can help:

1. One week at a time: Start with just a week per page. It keeps things focused and lets you adjust as needed.
2. Prep the next week’s grid: Have a blank grid ready, but leave it empty until you need it. This gives flexibility to accommodate any medication changes.
3. Set reminders: Use phone alarms for key times in case your routine changes daily.
4. Share and celebrate: Post about your progress! Updates let others cheer you on, and positive comments really boost motivation.

Have you used any strategies to stay on track with a challenging routine? I’d love to hear what’s worked for you too!

Originally posted at hivblogger.com

I want to say that I woke up yesterday morning after a night of bad sleep, but it would be more accurate to say that I woke up after a night of very little sleep due to coughing because of a chest infection.

Andrew went to our pharmacy as soon as it was just about to open as I had run out of my Salamol inhaler and needed it. He got it and came back quickly. After using it, my breathing was much better, but I still reckoned that I needed to see a GP. So, it being Saturday morning and our regular GP being closed, we rang the out-of-hours service and got an appointment for 11:15. This meant we had to get to Port Laoise by then. Andrew then had to go to the pharmacy again so that I could take a Covid-19 antigen test. So that was his pharmacy visit number 2.

The antigen test returned negative, so we were clear to head on to the out-of-hours GP clinic. The easiest way to get there was to walk to the bus stop, get on the airport bus to Port Laois, get off at the hospital, and walk down the road to the out-of-hours GP clinic.

We arrived ahead of time, entered, sat down, and then I was called by the triage nurse to have my stats checked. Pulse of 94, SpO₂ of 94, too, my temperature was 35.9ºC. She didn’t check my blood pressure, but I was pretty certain it would have been high, as usual, as well.

I went back out to wait for the GP to call me in. Within a couple of minutes, he called me, and I entered his consultation room. I explained what was going on. He listened to my chest and said that there was a bit of a wheeze, so he prescribed

1. Amoclav 500mg/125mg one tablet, three times a day, spaced evenly through the day for seven days.
2. Deltacortril Enteric 5mg, six tablets, once a day with or after food for five days.

On our return to Monasterevin, we visited the pharmacy again, the third time for Andrew in one day, to have the prescription dispensed. Then we returned home. Yesterday, I had two of the Amoclave tablets and one of the Deltacotril enteric doses as well.

I am sure that these medications will help the chest infection go away. Today, I managed to walk to the main street of Monasterevin to visit a cafe for lunch. On my walk back, Andrew nipped into the local SuperValu, and I waited in the sun on a public bench. It was lovely being out in the sun in shorts and a T-shirt. Now, I am sitting back at home in the sitting room while Andrew naps upstairs in his office. This evening I will take the second Amoclav tablet for today with the Deltacortril enteric dose for today with some toast and jam.

Originally posted on HIVBlogger.com.

Yesterday, while I was on dialysis, a secretary from the Vascular Clinic at Midlands Regional Hospital in Tullamore called to schedule an arm scan. I’ve been waiting for this scan for several months to determine if there’s enough space in my arm for another arteriovenous (AV) fistula, which would aid in dialysis access. Given the opportunity to attend today’s appointment, I eagerly took it and travelled to Tullamore by train.

Upon arrival, I was asked to remove my t-shirt, which seemed excessive for an arm scan, but I complied. The nurse then informed me she was ready to scan my right arm. This surprised me because I thought the scan was for my left arm. The nurse went to consult another professional, but they were unavailable. She returned, and we had a discussion about the situation.

The main reason I don’t want a fistula in my right arm is due to the loss of dexterity I’ve experienced in my left arm since having an AV fistula there. As an organist, maintaining dexterity in my right arm is crucial. Additionally, I was frustrated that I had travelled to Tullamore for a scan of the wrong arm. Had I known it was for my right arm, I would have cancelled the appointment to avoid wasting both the nurse’s and my time.

On a positive note, we learned that placing another AV fistula in my left arm is impossible. The team usually starts with the forearm and moves up if necessary. Since my current fistula is in my upper arm, there’s no more space for another one in my left arm. This means we need to explore other alternatives. I have requested to speak with another renal consultant with whom I have a good rapport, partly due to our shared Scouting connection. I hope we can find a suitable solution from now on.

Originally posted on Hivblogger.com

In January 2024, I was diagnosed as autistic. This diagnosis confirmed what we had suspected for some time. Nothing has changed since then, and I am still me. But, with the diagnosis, it is easier to explain to others why I react in ways that most people do not. I still find it difficult when things are done in different ways. I like the routines. The main place that this comes out is in my dialysis clinic. Since I help with the setting of my machine that makes things a lot simpler – at least for me.

Andrew also got me an autism support bear in the same manner as Liam the dialysis support bear. The autism support bear is called Otto von Bearsmarck – and he comes to dialysis more often nowadays than Liam. He has recently taken to Instagram to post about how he supports me. You can follow him there.

I am always being reminded by my renal medical team that I need to be physically healthy for a kidney transplant were one to come up; therefore, I’m looking at renewing my active lifestyle to help with that. Follow the Positive Exercise blog for future updates there.

I have just been sent (and have now completed) the EMIS study (European Men’s Internet Sex Survey) 2024. It is completely anonymous and provides vital information about gay men’s health in Ireland and Europe. 

EMIS, a collaborative effort involving the academic, community, and governmental entities throughout Europe, was initiated in 2010 and reiterated in 2017, generously supported by the European Union Health Programme. Its primary objective is to inform interventions concerning sexual health among men who have sex with men (MSM).

The overarching goal of EMIS is to delineate the divergent sexual health requirements among various demographics of men, alongside estimating the prevalence of distinct risk and precautionary behaviours.

As a result of EMIS, an extensive array of technical and community reports have been generated, accompanied by numerous scientific publications. Moreover, the project has established 26 indicators spanning 60 countries across four continents, integrated within the UNAIDS Key Population Atlas.

The profound impact of EMIS is evident in the transformation it has instigated within the landscape of gay health across numerous European nations.

If you live in Europe (including the United Kingdom), it would be great if you could participate. The survey is at http://www.emis-project.eu/.

There is a lot of information about the survey, please click on the number 2024 to bring you to the survey. 

Please encourage your friends or family who are gay or bisexual to complete it, too. 

Wednesday saw the routine of ‘monthly bloods’ taken and sent off from the dialysis unit. In recent months, the most worrisome result has been the Hb or Haemoglobin level that has been recorded. Back in May and June, it hit a bottom point of 6.2. This week, however, it came back as over 10. This level means that I am back much more towards the normal level, and I am definitely feeling a lot better. 

I also received both an appointment letter and a reminder letter (printed the same day) from the Haematology clinic at the Midlands Regional Hospital at Tullamore for the last day of October. Whilst part of me wants to say, ‘Look, I’m well again — do I need to come?’ I will attend because it will be interesting to see what they have to say. For my part, I have a feeling that the Hb was low because of the failing fistula, and now that it has been settled down, it isn’t taking Hb away any more. We shall see. 

Originally published on HIVBlogger.com

The Irish Human Rights and Equality Commission‘s offices wer the venue for the launch of HIV Ireland‘s latest report: HIV-related Stigma in Healthcare Settings in Ireland: Findings from a Collaborative Joint Stakeholder Study by Dr Elena Vaughan of the University of Galway’s Health Promotion Research Centre.

There were two sets of surveys: one for healthcare workers; the other for people living with HIV (PLHIV). There were logistical difficulties in getting the surveys out to the relevant audiences to be completed. However, Elena did manage to have participation from 298 healthcare workers and 89 PLHIV.

Key findings

Some of the key findings were quite shocking:

People living with HIV

44% of people living with HIV report being asked how they got HIV by a healthcare worker.

54% of people living with HIV report having avoided healthcare for worry about how they will be treated by healthcare workers.

24% of people living with HIV report having been told to come back later, made to wait or put last in a queue.

20% of people living with HIV report having been denied service in the past 12 months.

Vaughan, E. (2023). HIV-related stigma in healthcare settings in Ireland: findings from a collaborative joint stakeholder study. Galway: Health Promotion Research Centre, University of Galway and HIV Ireland. https://doi.org/10.13025/ccsj-8336, p. 7.

Healthcare workers

21% of healthcare workers report using special measures that they would not use with other patients.

80% of healthcare workers have not received training in stigma and discrimination.

40% of healthcare workers say they would worry at least a little about drawing blood from a person with HIV.

25% of healthcare workers say they have observed a colleague talking badly about a person living with HIV at least once in the last 12 months.

loc. cit.

Experiences of stigma in healthcare settings

The report details some experiences of stigma in healthcare settings that were experienced by those interviewed by the research team. I know that I recognised two situations that had happened to me.

The physiotherapist said, `I can’t have you in the gym in the hospital because then it will have to be cleaned… so it would be a whole afternoon of no one else being able to use it because you’ve been in.’

Ibid., p.31

and

speaking of nurses using excessive or unnecessary infection control measures…

They came in in what I keep referring to as full body armour – they were in full gowns and masks and hair-nets and everything. And I said, Why are you dressed like that? `Well, because you know your condition.’ … Oh so because I’m HIV positive, you thinkg you need to be in all of this? `Yes.’

Ibid., p. 32

Both of those situations happened in a hospital in the midlands of Ireland. I have complained about them in the past. As the report says, I was able to self-advocate. Yet, the second situation happened even in the last few weeks when I was again there for treatment.

Recommendations

The report makes several recommendations for the future. They are laid out in four different domains: training and education; policy/practice guideline development; and research. I recommend you read the report online and read the recommendations there.

Links

HIV Ireland

HIV-related Stigma in Healthcare Settings in Ireland: Findings from a Collaborative Joint Stakeholder Study

Yesterday morning I was whizzed down the M4 from Tullamore to Tallaght for 0830 by two helpful ambulance crew from Medicall Ambulance Service. (Being Ireland, one of them I knew from my volunteering in St John Ambulance Ireland. It’s a small world!)

Despite arriving at 0830, it was nearer half past two before I was taken over to the IR department. Only on arrival there did I learn what IR meant—Interventional Radiology. 

Throughout the procedure I was awake though somewhat sedated. I found it interesting being able to see inside my arm as the consultant worked to clear the clot. Despite doing so, it was decided that the fistula was unusable for ongoing dialysis. Therefore they proceeded with replacing the temporary catheter in my chest with a permacath. 

I must thank the team who worked so hard to achieve the best possible outcome for me. In the midst of it all yesterday it was hard to see it as anything other than a terrible outcome. But, it really isn’t. The permacath means that I can continue to receive the lifesaving dialysis I need. 

After the procedure, I had to be observed on the ward for four hours by which time it was too late for me to transferred back to Tullamore. So, I understand that to be happening in time for dialysis at 1400. 

Thank you to everyone who has sent thoughts and prayers. It is very much appreciated. 

Despite being in Osborne Ward after which Liam the #dialysissupportbear is named, the bear is still in Tullamore. I’m sure he will get plenty of cuddles on my return. 

It’s been a relatively quiet day in the hospital today. With no visitors, it has meant that I have had to find other things to do. This morning I attended a church service online via Zoom. They were talking about Christian meditation. It was great to hear them mention the Jesus Prayer,

Jesus Christ, have mercy on me.

Now, I know a slightly different version:

Lord Jesus Christ, Son of God, have mercy on me a sinner.

At the end of the service, in the general chitchat, I mentioned that it is possible to use this prayer when walking, think of particular people and their intentions, or pray for the neighbourhood where you find yourself. I first heard this idea from Fr Richard Peers, now Dean of Llandaff.

Today, while feeling pretty miserable for myself, I took myself off for a little walk (only within the confines of the hospital). But I found myself praying the Jesus Prayer as I walked and later as I sat in the Healing Garden. I think it helped me. I hope it helped others too.

Perhaps you will try it yourself. Tell me if you do.

Originally posted at https://hivblogger.com/2023/09/10/sunday-in-hospital-feeling-low-but-also-feeling-good/