Lung Disease Day’s

Call it coincidence, or whatever you will – but over the course of my latest two rounds of Rituximab, I have ‘celebrated‘ significant lung disease day’s while hooked up to machines.

These machines [Intravenous (IV) infusion pumps] have been providing me with the much needed medication that I require to keep my SpO2 readings at a level that allows me to function normally, well at least breathe easier for the next 4 months or so 🙂

As I alluded to in my latest health update the day after the first round of my IV infusions of Rituximab was Interstitial Lung Disease (ILD) Day (13 September). 

ILD is the umbrella term used for a large group of diseases characterized by inflammation and/or scarring in the lungs. The inflammation and scarring can injure the lungs, making it difficult to breathe and get oxygen to the bloodstream. Shortness of breath is a common symptom of ILD, along with dry persistent cough, fatigue and weakness, chest discomfort, “clubbing” of the fingertips, loss of appetite and unexplained weight loss.

Patients with some inflammatory and connective tissue diseases such as; rheumatoid arthritis, systemic sclerosis (scleroderma), sarcoidosis, etc. are at a higher risk of developing ILD.

Unfortunately, it is often progressive in nature, which means that the lung fibrosis gets worse over time.

This progression is variable, with some people experiencing slower but steady progression, while for others the disease develops more rapidly with worsening disease symptoms.

Initially the fibrosis in my lungs developed quite quickly over a short period of time, due to some active inflammation caused by the Scleroderma (apparently), before being brought under reasonable control by having Rituximab infusions every four months.

In effect I have a triple whammy thing going on, as not only is the Scleroderma and ILD a big enough risk, but the medications I have to take to control my condition also play havoc effectively knocking out the immune system.

This in effect makes me susceptible to picking up any kind of cold or flu and/or respiratory viruses, including Covid which is now classified as being endemic in the community. Meaning that I have to be extremely careful and vigilant when out and about as I’m unable to wear a mask 😦   

Anyhow, here I am sitting at Hutt Hospital Medical Day Stay Centre getting the second course of Rituximab and starting to put together this post when I get a Facebook notification advising me that it is World Lung Day.

This was established by The Forum of International Respiratory Societies (FIRS), raising awareness for those affected by lung diseases.

It is an opportunity for the global health community to promote better lung health, advocacy and action.

It’s also a chance for organizations from around the globe to discuss how they can better work together to help rid the world of all lung disease.

FIRS is calling on governments and healthcare providers worldwide to give equitable access to preventive services and treatments for respiratory conditions. 

The theme for this year’s World Lung Day is “Access to Prevention and Treatment for All. Leave No One Behind,” reflecting the commitment to equity that is at the heart of the 2030 Agenda for Sustainable Development. 

The challenge to respiratory health is evident!
There is a clear lack of equal access to preventive measures all around the world.

Here in Aotearoa (NZ) I am having to self-fund my medications as Rituximab (which is available here in NZ for other conditions) is not covered by Pharmac funding for my ‘rare‘ disease.  

This can be extremely frustrating, especially as this along with other medications that are readily available worldwide and have been specifically developed for ‘my‘ disease are not covered by Pharmac funding, even though it has been approved my MedSafe.

The thing is, I am not the only one! Anyone who has any kind of autoimmune, rare disease or disorder, or invisible disability often has an uphill challenge when seeking medical assistance for preventative medications in this country often touted as ‘God’s Zone’. 

MyLifeMatters says New Zealanders’ ability to get new and breakthrough medicines lags way behind other OECD countries, which is something I alluded to in this post.

Countless lives across New Zealand are tethered to hope, and their survival hinges on accessing new and breakthrough medicines that are publicly funded elsewhere in the OECD, but currently not here in ‘God’s Zone’.

They are calling for the NZ Government, which we get to decide in a month or so, to; 

• Access new and breakthrough medicines in a timely way.
• Provide an urgent and clear plan to implement the findings of the Pharmac Review to address the significant shortcomings in Pharmac’s performance, especially its role and funding.
• Ease the financial burden on patients, especially the vulnerable communities.

Rare Disorders NZ are also concerned about these issues as; “People living with a rare disorder are estimated to make up 6% of New Zealand’s population, yet this large community experiences substantial unmet need and inequitable access to healthcare.

With over 7,000 known rare disorders, individually these disorders occur in very small numbers in the population, but collectively, rare disorders are estimated to affect 300,000 people in New Zealand.

This is, however, only an estimate based on international data, as no data is officially collected in New Zealand on rare disorders. This is because the classification system for diseases that New Zealand uses does not include most rare disorders.“

They have collectively identified seven strategic priorities to improve health and wellbeing for all people living with a rare disorder, which you can learn more about here.

In preparation for the upcoming elections they have asked each party where it stands with regard to these seven strategic priority areas to improve the overall health and wellbeing of those voters with rare disorders.
You can read more about it here.

In the meantime, we each need to remain careful and vigilant while out in the community, and in my case prioritise my lung care as it is especially crucial, as it can lead to further complications. Through regular monitoring and early intervention it can significantly enhance my lung function and quality of life.

The thing is, the importance of living well and adopting a healthy lifestyle including taking regular exercise, eating a balanced diet, managing stress, and staying positive cannot be emphasised enough.

For those of us with these concerns we should work in partnership with our specialists and GP’s to learn more about associated issues with our conditions and develop a plan of action to help us each to live well and manage the effects now and in the future.

We need to focus on the positive things that we can do in life in the here and now.

Being thankful for what we have, as in one moment our entire lives could be flipped on its head yet again, as another ailment threatens to derail us and leave us wondering what next.

Therefore, we need to manage the symptoms that we have as best as we can and maximise our physical, and mental health and well-being, keeping as active and fit as we can using a wide variety of ways which I’ll look at in a future post.

In the meantime you may like to check out the following;

The Importance of Thankfulness 
How Can We Develop Joy?
Where will you find joy?
Joy in the Hard Times 
Learn to Relax 

You can also link in with other patients and caregivers through Rare Disorders NZ support groups to learn from your peers and share experiences and tips for living well.

For those of you with Scleroderma you can connect with the Scleroderma New Zealand Inc. which has support groups in Hamilton, Palmerston North, Wellington (which I’m involved in currently), Christchurch and Southland.

I have found these times encouraging and uplifting. They also have a Scleroderma facebook page for people with scleroderma and their families and friends here.

Alternatively, you can connect with Scleroderma Support & Education NZ via Facebook.

Keep safe and stay healthy everyone.

Blessings ’til next time 🙂

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Health Update #14

Earlier this week, I was hooked up to a ‘new’ machine, getting the first round of my four-monthly Rituximab infusions, for Scleroderma with associated Interstitial Lung Disease. However, to get to this point, has been a bit of a rigmaroll 😦

Initially we had to explain to the Rheumatologist, via email, that my treatment protocol had been changed, about a year ago, to four-monthly.

Then, to top things off, it took an extra week and a half to get the prescription to the chemist as it had been sent, via snail mail, to our house 🤔

Just when we thought that the appointments with the Medical Day Centre at Hutt City Hospital could get confirmed, I needed to reschedule my proposed appointment for a week later, as the medications were taking longer than anticipated and compared to how long they had previously taken to get here, due to the fact that there weren’t any in the country for the supplier.

A week later (Monday morning), I was on the verge of having to reschedule my appointment, yet again! As the Rituximab hadn’t arrived in Wellington. The chemist assured me though it was now in the country and that they should be here in time. If needed, he offered to deliver them to me personally on his day off to the hospital, now that’s service.

This all meant that I’d have to go to the Phlebotomists again, for the second time in a week, to get my blood sucked out, by one of there vampires, so that it could be sent away for testing 😆

Nah only joking, in reality, this was a breeze as the testing centre was empty, the phlebotomists were friendly as, and I was in and out of there real quick – all but another bruise and plaster to show for it.

Over the past few months or so, I’ve noticed that the bruising appears very quickly where they insert the needle and it takes a lot longer to heal.

So, I alternate which arm they take my bloods from each time I visit them.

In the past, this was something that didn’t tend to happen at all – maybe my skin is getting tired of being prodded and stabbed so often 🙂

Later that afternoon, I got a phone call from the chemist to pick the meds up, as they’d arrived in the mid-afternoon delivery.

So here I was scampering down Cuba Street, with walking stick in tow at 4:45pm, picking up my meds before they closed, en route to pick up Annette from the airport.

She’d been away in Invercargill for the 140th celebration of the Corps for the weekend, and she’d used the opportunity to catch up with Christina & Jonny and our grandson Jack, along with Patrick and Delana. Emily had also been down for the week, so all the kids were together for some much needed family time (excluding me 😕)

Anyhow, you’d think that after being at the Medical Day Centre so often in the past few years, I’d get used to seeing familiar faces and facilities.

But it would appear that they’ve not only had a few upgrades in equipment, they’ve also got a lot of new faces, there were only one or two faces that I knew from my last visit.

However, for the most part they were a much younger team and they provided excellent friendly service to me and the others that came and went throughout the day who were getting infusions for a variety of different ailments. I must say though, that some of the nurses, and even the doctors, looked a lot younger than my own children 😳 Am I really getting that old?

The procedure itself went reasonably well, yet again, which I’m forever thankful. To date, I’ve not had any adverse effects from the meds, and although it knocks me for a day or two afterward, (generally tired – but what’s new) 🙂 I do bounce back reasonably quickly feeling a tad better, and can breathe a bit easier, with my O² levels improving as well.

Settling into a comfy recliner chair, I finished writing a post entitled ‘Season of Creation‘ while I was infused with Rituximab and I listened to a progressive rock project, ‘United Progressive Fraternity‘ (UPF).

I’ve recently been introduced to this group through Spotify and have come to really enjoy their music and the environmental message that they are trying to get across, which is timely as we are in the ‘Season of Creation‘.

I ended up listening to both Planetary Overload Part 1: Loss, and Planetary Overload Part 2: Hope. Both albums by the UPF project fulfil a lifelong ambition and passion of Mark Truey Trueack (Unitopia); to bring people together under a common love of music and concern for humanitarian issues and the environment. 

Why not check them out for yourself if you enjoy progressive rock music 🙂

Anyways, in another two weeks, I’ll go through the whole infusion process again to get the second course of Rituximab into my system. This time, it should be a lot smoother, as they’ll have the vials stored in the fridge ready to mix.

The things we go through to help prolong the deterioration of our lungs, or any other organs for that matter, beggars belief at times. Those with rare disorders, invisible disabilities, and autoimmune diseases know all too well the daily struggles and challenges that one has to go through – but go on, we must!

Sometimes it can feel a bit like deja vu going through the infusion process and also having to navigate a health system, which at times could make things a lot simpler for the ones having to access their services. Maybe that’ll happen in time – we’ve gotta hold out hope right! 

Ironically, the third Interstitial Lung Disease (ILD) Day was celebrated in the US this week, and I’ll be writing an additional post about it in due course, which should be out in the next week. So keep an eye out for that.

You can also keep up to date with my health journey here. It has a series of other posts related to Scleroderma that you may be interested in reading.

Blessings ’til next time 🙂

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