Friday, 10 April 2015
I went to bed on Friday night early - I was exhausted. I had spent a happy afternoon making love with CHARLIE(!!!) at his beautiful home across the city from me. Because of my autoimmune diseases that I have, I seem to be particularly susceptible to Urinary Tract Infections (UTIs), and I'm most likely to start one after sex. So I took my new 'protocol' antibiotic, Macrodantin - I'm supposed to take one every time I have sex as a preventative measure. I also take Trepiline at night - it settles my anxiety levels and helps me sleep.
At 10 I woke up with a pain in my chest. I was struggling to breathe. I just assumed I was having a bit of an asthma attack, so I went to my son's room to take a puff of his Ventolin. Still groggy from my Trepiline, I slipped off to sleep again, thinking that I was going to be fine after the swig of Ventolin. At midnight I woke up again. This time the pain in my chest has horrendous, and I realized I could hardly breathe. I was dazed and confused and could feel my faculties slipping away through lack of oxygen.
My little psychic voice whispered to me then. 'Check side effects of Macrodantin'. I Googled it immediately. It had all the normal stuff, and then said that if you suffer any breathing problems at all, 'get thee to a health practitioner without fail!' OMG. I was alone at home with my young sons. It was the middle of the night. I could feel my senses slipping and slipping and I realised I didn't have enough time to wake up someone to drive over and fetch me. I was going to have to take myself immediately. And leave the kids alone in the house!
So I did get to the emergency room intact and they did all the right things to get me lucid again, treating the event as an acute asthma attack. So I got oxygen and nebulised and booked in to figure out what happened. And found myself in the middle of a 'House' series medical mystery.
I went for a CT scan. It's the second time I've had one - they did one last time I was holed up in August last year. Both scans came back with some long and scary words, talking about scarring on the lungs, and 'opacities', and all sorts of horrid sounding things. And Rheumatoid Lung. And Interstitial Lung Disease. And so I started Googling again. Those words are very scary: They have with them the words 'fatal'. And 'Lung Transplant'. I started seeing a path ahead for myself that looks incredibly grim, And ill and bleak. And shorter than I would have liked.
My week in hospital was about clearing up the infection that had now developed in my lungs, and shoring them up with cortisone and antibiotics and antihistamines. And I was completely dependent on the piped oxygen to keep my oxygen levels at a safe 96%. If I was off oxygen for any length of time, my SATS would drop to about 86% or 88%, which is the level that guys get to when they try to climb Mt Everest and start making bad decisions because of faulty capacities. I decided to use the time to work myself well. Lying in a bed with drips and meds being poured into me wasn't going to be the only way out of there I decided. So I got out of bed, switched on the walking app on my cell phone, and started walking the hospital corridors in my dressing gown, trying to get in as many steps as I could before I needed to go back to my bed and replenish my oxygen levels. I was averaging 5km per day of hospital corridor! Doc couldn't understand how I could do that - he said my lungs were dispersing oxygen in an odd way and that I shouldn't have been able to do that walking. But I could. So I did. And think that moving felt like such an important thing to do as part of my own contribution to healing myself. Stronger body. Exercise. Lungs moving.
After five days in hospital they released me and I've spent the past 3 days at home. Finishing off the antibiotics, cortisone and anti histamine tablets to settle down this acute attack and get my lungs breathing properly. Yesterday I took myself off to my family doctor with all the reports and recommendations and medications to just try to make sense of it all. I still don't really know what's actually wrong with me - and it's all right to get myself settled after this attack. But how do I make myself heal now? How do I understand fully what's happened so I can manage it better? My lungs seem shredded - criss-crossed with scar tissue and debris from these attacks. I have heard that lungs can regenerate after years of smoking destruction. Will I be able to rehabilitate mine?
Doc's thinking is as follows:
1. Ground Zero is the attack I had on Friday night. Probably Asthma. Vomiting included
2. It looked just like the attack I had in August last year (after Mark) which landed me in hospital for nine days
3. I had a mini attack about 6 weeks ago when I was with Bush Man. Sore chest. Fatigue. Vomiting.
4. These attacks were triggered by something. They're a symptom.
5. I took Macrodantin before each attack. Twice that was teamed with my weekly Chemo, Methotrexate.
6. Macrodantin has severe lung damage as a side effect in rare cases. So does Methotrexate.
7. I also have some indications of Rheumatoid lung, which could also have triggered the attacks
8. Something else entirely that we haven't thought of yet triggered them.
So I'm off to a Pulmonologist next month. I'll need a lung biopsy to try to diagnose the issue and assess the damage before we know how to proceed.
And I need to walk through another month wondering whether I have a fatal disease or not.
And be ok..