Thoughts on the Aspergillosis Journey Five Years On
I have written about the initial journey and diagnosis before, but it is the ongoing journey that occupies my thoughts these days.
From a Lung/Aspergillosis/ Breathing perspective, now that we are coming into summer in New Zealand, I feel that I’m doing ok, looking and feeling well.
Some of my current Medical Background: -
I started the Biologic, Mepolizumab (Nucala) in September 2022 after a really difficult 12 months. (another story). By Christmas I was much improved and from a breathing and energy perspective, had a good summer although the weather was so bad, it was hardly a summer.
I got complacent about precautions and in early February a grandson visited with what turned out to be a nasty flu, that I then went down with. 6 weeks later a follow-up X-ray on the lungs showed up a heart issue that needed cardiologist to check “well the aortic stenosis isn’t a big worry, but the aortic duct never healed over as a child. We could repair but ….” the answer to that was “I’m over 70, had 4 pregnancies, I’m still here & the risk factors with all my other issues …. not going to happen”
Once finally over those two hiccups, my 81-year-old sister was admitted to hospital and I was trying to advocate for her, she got Covid that I subsequently got from her. (I had done well to stay Covid Free for 2.5 years). But yet again any infection I get these days takes much longer to recover from, still had it at 4 weeks and at 6-8 weeks my GP was concerned that I might have developed Long Covid as my BP & Heart Rate were still a bit on the high side! My sister was diagnosed with Myeloma and died within 6 weeks of diagnosis.
Since starting the Mepolizumab I had noticed increasing problems with incontinence, and this developed into a full blown Pyelonephritis (e Coli Kidney Infection). As I only have one kidney, the anxiety level over this was a bit high as the symptoms were/are all very similar to when my other kidney was eventually removed. (No plan B here). Toss-up: able to breath verses learning to deal with some incontinence.?
Overlay all of 2023 with ongoing Mental Health issues with my 13-14 year old granddaughter, so my daughter and her husband, on whose property I live, were totally pre-occupied in trying to keep her safe and all the care that she requires. We are all grieving the loss of this child who is now in care.
Pain levels are high, energy levels are very low. Prednisone has essentially killed my cortisol production, so I have Secondary Adrenal Insufficiency and Osteoporosis.
But I am Thankful.
I am so grateful that I am blessed to live in a country that has a Public Health System (all be it a similarly crumbling one as NHS), I was able to move to an area that has a good teaching hospital and be close to my daughter (Palliative Care physician) & her husband (Anesthetist), that I have access to free public health medications and a really good GP who listens, looks at the whole picture and does her best to get all the Specialist to review the situation. Recent x-rays and Dexa Scan revealed the extent of the damage and deterioration of the spin: Info I need to bring to the attention of the Physio who is trying to help with my motivation/activation of strengthening exercises. Endocrinology suggested a 5mg increase in my hydrocortisone and a pushing out of the dose timing and that has made a HUGE difference on how I cope with dealing with all that is going on and the pain. Urology has finally accepted a referral to review my kidney situation, although it still might be a few months before they see me. A recent checkup with the Physio found that the exercises had made a difference, and I was considerably stronger in my legs. I still struggle to actually do these, but this info does inform me that I do need to persist.
The Biggest Battle is Mental Attitude
Each of our stories will be unique and for each of us the battle is real. (When I write mine all down, it does sound a bit overwhelming but generally I don’t think of it in that way. I have shared my story only as an example of the complexity of the journey.)
How do we cope with all of the changes that come upon us? I knew that my health would change as I got older but I feel like it has come upon me so rapidly. I didn’t think of myself as old, but my body is most definitely thinking and behaving that way!
Learning to
Accept the things I cannot change,
to Work on the things I can change,
And the wisdom to know the difference.
This process of letting go of dreams and hopes, then setting new more modest goals has been important. I have had to learn that after a more strenuous activity (by current abilities) I then have to sit down and rest or do something that allows me to rest and be productive. I have previously been somewhat of a ‘workaholic’ and not much of a planner, so this has not been an easy transition. All of these changes are a Grieving Process and like any grief, we heal better if we acknowledge it for what it is, then we can learn to live with our grief. We can move forward into all the ‘new normals’. I now have a planning diary with notes on the things that I want/need to do but it is not planned out in detail as I have to “go with the flow” as it were on how much energy I have available to get things done. The reward is that I will eventually get things ticked off. If it’s only 1 or 2 tasks per day, that’s ok.
When I finally got a diagnosis in 2019, I was told that “it was not lung cancer, it was ABPA which is chronic and incurable but could be managed”. What ‘be managed’ entailed, I most definitely did not take in at the time. Every medication that we take is going to have a side effect; antifungals and prednisone are way up there in that respect, and it is sometimes the side issues that are more difficult to cope with. Mentally I have to remind myself that I can breathe and haven’t died of a secondary pneumonia because of the meds that keep the aspergillosis under control. I am alive because I manage my intake of Hydrocortisone every day.
Weighing up the benefits versus the side effects. There are some medications that once I studied the side effects and counter indications and weighed that info against the benefits for relieving Peripheral Neuropathy, I consulted with a Doctor and we dropped it. Other medications do have to stay, and you learn to live with the irritations (rashes, dry skin, extra back pain etc.). Again, we are each unique in what we can manage and sometimes it is the attitude (stubbornness) with which we approach the situation that will determine our direction.
A note on stubborn…. Last year I set myself the goal of getting my daily average walking distance back up to 3k per day. A bit of a mission when some days I wasn’t reaching 1.5K. Today I managed a 4.5 flat walk on the beach and more importantly saw the daily average over the past 12 months get to 3k per day. So, I celebrate a win for as long as it lasts. I make clip-on pouches for my iPhone so that I always carry it to record my steps and recently purchased a Smart Watch that includes recording all my health data statistics. A new normal to track this stuff and the NAC research Team are wondering if such data could help us predict ABPA flares etc.
For me, my faith in the sovereignty of God is paramount in keeping me focused and moving forward.
“He knit me together in my mother’s womb. My days are ordered by his hand.” Psalm 139.
I have been saved by Grace, by Christ alone.
Yes, a number of my medical conditions could/will contribute to my death; we all die at some point, but I can live the best life I can now knowing that God still has work for me to do.
“This world is not my home, I’m just a passing through.”
Talking with others on Teams Video, reading posts or stories on Facebook Support or the web site, all adds to helping me keep positive. (At least most of the time) Hearing other people’s stories helps to put my own back into perspective … I could be worse. So as best I can, with the Lord’s help I hope to encourage others to keep walking on the difficult road you sometimes find yourself on. Yes it can be very difficult at times but look at it as a new challenge. We are not promised an easy life.
November 2023
Alison Heckler ABPA