19/01/2025
As promised, here is my latest health & life update. It will be a long one, because I need to share a story that is hopefully powerful for others to read.
Where to start? So much has happened since I last posted.
I caught Parainfluenza at the end of November '24, as mentioned in my last post. A week later, I caught the new virus going around – HMPV (Human Metapneumovirus), which is ALSO a respiratory virus.
You’d think this immunocompromised girl having 2 respiratory viruses all at once (plus heart damage), would knock her off, or send her to hospital in a critical state. (Well, it should!). But all Glory to God, for his constant, unwavering protection for me always. I have a “holistic regime" I always start at home when I get a flu or virus & it helps immensely. I’m also thankful for my Port-a-Cath that allowed me to do Intravenous Antibiotics from home (rather than in hospital). I definitely have been knocked around pretty hard from the virus onslaught, but I’m thrilled to say that after almost 2 months of IV antibiotics, a nebulised antibiotic, many clinic visits etc, I am coming out the other side!
As the stubborn girl I am, I keep trying to push on & live life to the full, despite all the setbacks, chronic pain, chronic exhaustion daily that feels ever-consuming some days. So, we went camping after Xmas, still! HA! 😆
Yes, I took my inhaled antibiotic camping. I was due to stop Intravenous Antibiotics through my Port the morning we would be leaving for camp. We were able to convince my transplant team to let me Heparin Lock my own Port-a-cath & have my Mum take my needle out, so I didn’t have to drive all the way to Hospital to have a nurse do it. (We are more than competent in nursing here, but getting doctors to agree to let you do it can be hard sometimes). Off to camp, with pills, diabetes needles/insulin & nebulisers galore. Unfortunately, we had to cut our trip short by 1 day. My heart is not doing well, & I started to not cope at all in the heat. But it was still a good trip getting to camp with our awesome friends, Laurie, Chris & their son Samuel.
When we arrived home, I called my Team, to organise a short stint in hospital. They wanted to do a Bronchoscopy, to ensure nothing else was going on with my lungs, as it was taking a long time to overcome the effects of the Virus & praise God that they found nothing sinister. But, I also am having a lot of issues with retaining fluid – because of my heart. To refresh everyone’s memory, we have detected I have heart valve damage, of the Mitral Valve. I had a drug reaction back in August 2024, & I believe this drug has damaged my heart. If you haven’t discovered it by now…. I am the unluckiest person I’ve known! I go from one crisis to the next. It’s a new year, & the new life threatening crisis is… Heart Damage, & attending Heart Failure Clinics. So, going into hospital for 3 days at the start of January allowed the Cardiologists to get my fluid under control with IV diuretics.
When I go to hospital, my world slows down. There is less mental load, no appointments to attend, no meals to cook, no house to clean, no things to look after. Sometimes, hospital is not so bad, when life is so overwhelming, that you just need to take a step out of it for a short time. It was in here 2wks ago, that I heard God speak to me the most. In the semi-silence, in the slow….
Karl & I have been feeling quite depressed, stressed, worried… as we have watched me decline so fast at home, with my independence & symptoms to do with my heart damage. Questions like; “Has this shortened my life span now even more? How long am I going to be here for? What if they can’t fix my valve, where does that leave me, where does it leave us? Our life has only just started together.” Things have felt dire & heavy, to say the least. Sitting on my hospital bed, our gracious, ever-loving Father in Heaven, decided to give me hope & ease the weight of worry. To remind me that He has a plan.
I got a notification on my phone for a “Verse of the Day” from the Bible App on my phone that Saturday. Those who have the Bible App will know that the app sends you a verse every day. This was not the perplexing part. I started to read the few words I could see & also read it was a verse from Jeremiah.
I clicked on it, to open the App so I could continue reading the verse. To my confusion, the app opened up to a completely different chapter of the bible (Peter), & the verse was talking about something completely different to what I had just read on my Lock Screen. Naturally, I’m like “Huh?”.
I went to the Menu of the App, clicked on “Verse of the Day” where all past verses appear. The verse from Jeremiah I had read on my Lock Screen was NOWHERE to be seen, going back weeks!
The “Verse of the Day” for that day was in fact, the verse from Peter…. But where was the Jeremiah verse that appeared on my Lock Screen as a notification saying “verse of the day”? Nowhere to be seen… Immediately my interest peaked… Did God just send me a verse from the bible, to my phone specifically for me to read…? Now I MUST find that verse, & know what it said.
I typed into the search bar, the few words I remember reading on my Lock Screen, & was able to find the exact chapter & verse in Jeremiah.
It read: “For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. Then you will call upon me and come, and pray to me, and I will hear you. You will seek me and you will find me, when you seek me with all your heart.”
Wow. This verse spoke to me on MORE than one topic, but most importantly, it did exactly what it was meant to. It comforted me, it gave me encouragement in a time when things felt so heavy & dire with my health. But it also reminded me of those times in life where HARD things happened, & years on, I was able to look back & see the Divine plan in it all, & how God carried me through, & even, what the purpose was through all the suffering. It reminded me God is a Good God, a Loving God, & even amidst hardship, God is working for the GOOD of those who love him. He wants us to relinquish all control, over our circumstance, our hardship & give it all over to Him completely. He wants us to seek Him with all our hearts, surrender to His will, and just TRUST him.
I was just in awe of the circumstance of how this Verse was delivered to me, on my Phone, to get my attention – so God could give me a little bit of love & comfort, which he did not have to do.
I was never doubting that God was not present through all of this, but the worry about the future, the what if’s had been getting heavy, for both Karl & I. God knew.. and being so full of love, he wanted to remind me that he knows, & he has a plan for welfare, for a future, a hope, & to keep seeking him & trusting him. Thank you God, for reaching out to me in that hospital room.
I’ll finish this post asking if you could continue to uphold me in prayer.
I feel it’s going to be a tough year ahead for me with this new health battle, but thankfully the spiritual army surrounding me is tougher!
Prayer Points: 👇🏻
1) Soon, I will see the Heart Surgeons. There is concern surrounding how they’ll be able to try to fix the valve as both options are difficult. Open Heart surgery is opening up my chest again (which has been cracked open twice already – this is most likely a bad choice, recovery will be terrible, my bones are bad, and so much scarring from two lung transplants already). Second option is going up through a main artery in my groin to reach the valve. The issue with this is my veins are very small, scarred & occluded. Doubt surrounding whether the main artery will be clear, big enough with no occlusions to give them a clear path to the heart valve to fix it. Please pray that there will be good news, & my veins will give them clear passage to fix the heart valve, without needing to resort to open heart surgery.
2) Pray for my fluid retention to get better managed. The tablet diuretics aren’t ‘cutting the mustard’. The fluid build up in my body makes breathing 10x harder, & makes my heart work even HARDER than it already is due to the heart damage. It puts more strain on your heart & is very dangerous for your heart.
3). Pray for protection over my kidney. I only have one working kidney that I received through a kidney transplant. It is now starting to struggle more, because of us trying to manage the fluid retention with fluid tables & restricting my fluid intake. It is a hard balance & trying to maintain this balance is now impacting my kidney function.
4). Pray for our mental, physical & emotional wellbeing through all this. We often feel so far away from friends & support where we live. Life is feeling harder, as I try to maintain our life, the house, & my health commitments, while Karl is at work for us every day, & I’m still getting sicker with less capacity as the weeks go on.
4). My diabetes has "come back" after successfully managing it with herbal supplements for the last 3+ years. I suspect it's because my body is so ill at the moment with the heart troubles. I'm back injecting insulin 3x a day & it's not fun at all. Please pray this resolves itself too & I won't have to keep doing this.
Praise Points: 👇🏻
1). The Bk Virus level in my kidney is still extremely low & staying low even with ceasing all my Immunoglobulin infusions! My renal doctor basically doesn’t see this virus as an issue anymore, the level sits between 200-600, which is not worrying to them at all. I still believe God will eradicate it completely, but for now, I’m thankful this kidney virus is pretty much in the past. Praying for years for God to get rid of the BK, & watching the levels drop each year (from 5.5million) has been an amazing miracle to witness. Thank you God!
2) God getting me through the onslaught of viruses that should have put me in hospital in a critical way – thank you God for your protection & for the health/holistic knowledge you’ve been giving me the last few years too.
3) I have a small casual job doing content creation/social media work, & It’s been a fantastic distraction from health things & is something I can fit in around health commitments. It’s given me some normalcy back, given me my “creative outlet” & allowed me to contribute to our finances which I’ve wanted to do for a long time, but have been too unwell to properly get into the workforce again.
4). God continues to pursue me & speak to me in so many ways. I’m so grateful for the “strong feelings” I get from the Holy Spirit about different things in life that are going on. The more I respond in obedience to these “strong feelings”, & make decisions based on them, the more I hear from God & the closer I feel to him.
Enjoy some photos from the last 2 months. Christmas Lunch, Camp photos & me doing my nebuliser at camp, & the cats not letting me out of their sight when I got home from hospital! What a blessing those two are! 😍
