Dealing with the stress of medication
I count myself lucky. I am on warfarin, an anti-coagulant one dose a day medication, for the rest of my Life, to protect my heart.
Yes I’ve been told enough times that warfarin started off as a rat poison, thank you to those itching to tell me that. I don’t care, as long as it is the right thing for me to take to stop clots on my heart.
In October 2014 I had OHS or Open Heart Surgery (twice). I was born with a narrow aorta and a condition called supravalvular aortic stenosis. Coupled with a slightly faulty aortic valve which I left for too long as was, I needed the Bentals procedure.
I didn’t care at all for the surgeon showing me an example of the St Judes mechanical valve that would be fitted. I left it to my sister and my mother-in-law to peer at the images showing a super enlarged heart.
Things went pear shaped and I went back into ICU for a 2nd go (so had 2 sternotomies) and was so weak afterward that I couldn’t even lift a jug half full of water.
I had to lie in bed on my back for 4 weeks, upon discharge from hospital, to sleep.
At the hospital I was supposed to roll myself onto my side carefully and swing myself off the bed, but couldn’t because there was only 35 kilograms of me and I was too weak altogether to do so.
One of the Surgeons, Tim, scared the daylights out of me, saying I had to make sure that my INR (International Normalised Ratio) a measurement of anti-coagulation, must be no lower than 1.8 and it was best to be between 2.0 and 3.0 meaning my bleeding factor should be 1.8 times to 3 times higher than the norm.
As I struggled to grapple with the idea of taking myself regularly to the pathology laboratory for a plasma blood test for this measurement, and with how the hell I was going to get myself to my local GP every day for weeks after my discharge, his face took on a black look.
“You wouldn’t want a message on your headstone to read Died because she didn’t take her medicine.”
I was rendered speechless. Thanks Dr Tim, way to go to motivate someone who has just been through heart surgery. I can’t help it if I was rather stressed and trying to work out how I was going to get myself to my GP.
Luckily there were more empathetic surgeons like Louis whom I liked a lot.
I discovered that the Silver Chain would send nurses to homes to measure the INR with a portable machine, and administer Clexane if necessary. To my dismay they said they wouldn’t go to my area (as back then the organization was fitted out to service more remote locations only).
Well, I pleaded with Oliver, one of the kind Registrars (senior doctors) and he organised the Silver Chain to make an exception and make house visits for my case. When my INR was below range, the nurses gave me a Clexane injection directly into my stomach, which jolly well hurts.
Clexane is a low molecular weight anti-coagulant that gives some coverage, but of course acts or works differently to Maraven (the brand of warfarin that I am on).
Warfarin takes a couple of days to take effect, especially at the start of taking it. It took 8 months for me to stabilise on warfarin, as I am sensitive to it, and to this day I am on low doses.
Fortunately my sister bought a Coaguchek device for me, and this year after spending 5 horrific days in hospital in the first week of January due to a stomach ulcer, which nearly killed me, I spent $144 on 24 test strips.
I had been given an INRatio device by the hospital back in 2014 but with taking so long to recover, being weak, having a wound infection and seeing wire sticking out of my skin, learning to take and regulate this medication nearly broke me.
However, I am very blessed for all my many good fortunes. 👼
Luckily, I have a partner (whom I call Mere Male or MM) who I had been with for 20 years and he did the most marvelous job, helping me manage my medication. Hooray!
I got through it by leaning on MM as I walked to our nearest pathology lab and listening to his advice and taking it easy and being positive. The week after my discharge I went back for a chest x-ray, which found fluid in my lungs.
They nabbed me, meaning I was unexpectedly re-admitted. My sister kindly bought me a beautiful small picture of Mother Mary and a book of word puzzles. I sadly took my leave of my sister and partner, without even a change of underclothes with me.
I was awake but the doctors applied a local anesthetic to my side and covered my face with a cloth, so I couldn’t see. One of them cut a hole in me and at some time I thought my whole back was going to seize up.
I was shocked. Well a tube was pushed in and someone spoke my name. Sulking I declined to reply. After a second alarmed “Celine?” my muffled and cross reply came “I’m alright.”
Louis delightedly said “Good one litre has already come out” or something like that, looking at me, but I scowled at him. Trauma does these things to you.
There was worse to come because the nurse was supposed to check me every 2 hours but didn’t and my buzzer had fallen off the bed and I couldn’t reach it. My voice was too weak also, to summon anyone.
I lay in bed for hours, very thirsty, and when the nurse finally came, I was able to have a drink of water. To this day I wonder if I had been dehydrated and if I had been, if that had contributed to my taking so long to recover.
I had 3 months off work then returned but to stressful circumstances.
My medication is taken in halves, e.g. I tried 3 mg daily but it was too much, then I tried 2.5 mg daily but that was too low, so found a weird pattern of taking 2.5 mg twice then a 3 mg dose, with this pattern repeating.
The dosing reared its head again this year.
The dreadful news in hospital this January hit me when I realized I had to stay in hospital longer to regulate my INR once again.
At my admission the Emergency staff took my INR which was 4.3 and were impressed by my response, which was to shout “Jesus.” (Apologies for this, but it was my “gut” reaction!)
The thing is I didn’t look anemic but I was in dire straits and had ignored warning signs 2 days before. My guardian angel must have been looking after me, as my sister and I were holidaying at a hotel in the city and were just 5 minutes drive away from the hospital.
I coughed up a lot of blood and had a blood transfusion which made me see weird things at night for 2 nights in a row. I was affixed to 2 drips, one for an antacid (PPI or proton pump inhibitor) and one for Clexane, to protect my heart.
On the 4th night the nurse told me I needed a potassium drip so a third drip went in. It hurt. Imagine my feelings when she said “we’ll put it in slowly because of the pain.” I thought I was living on Nightmare Street.
It lasted 2 hours and the viscosity of it felt like my arm was being crushed. When I got home 5 days after being admitted, I couldn’t turn off all the deafening horrendous sounds in my head for 3 hours when I went to my own bed.
The nightmare was not over as the weekend registrar had told me that I would have to have Clexane every day for a week when I got home! 😢
I was horrified. She said my medication would need to build up again, and that I could inject myself with Clexane.
Well, that was the last straw! Normally quiet and demeaning I said very firmly “No that isn’t going to happen, I could never physically do that.”
She was understanding. I imagined myself being carried to my local medical practice for a Clexane shot, and I asked “how many injections would I need” and she replied “twice a day.”
I shouted “No, I’m not getting them twice a day!” This time my face was thunderous. I was getting to the end of my tolerance.
She said “Well, once a day then, 24 hour coverage. I’ll organise the Silver Chain to go to your house to check your INR and administer the Clexane if you need it.”
Pheww! This is what happened, 😃 though the nurses came at strange times of the day, not when they were supposed to. One came when I was still in my pajamas at 7.30 one morning.
“Why didn’t you phone me yesterday?” I asked her, and she replied “I sent you a text message this morning.” Yeah, right, I got it a 7.00 am when I was still in bed!!
Slowly I readjusted to my medication, then when I realized that my health woes for this year were far from over, I went to Chemist Warehouse to buy the strips. I had found out a couple of years before that boxes of 12 are not produced anymore, so it was a box of 6 or a box of 24 or nothing.
12 strips would be just right, for me personally to use one a month, but no, there aren’t enough profits in boxes of 12, so I must pay $144 AUD for a box of 24. 😒
A blood test revealed that I was low on iron, so a few weeks back I signed a consent form for an iron infusion at my local GP. The doctor scared me saying it could leave a horrible black mark (a tattoo) on my skin if the iron leaked, and I nearly backed out.
I went ahead and am glad that I did, because it helped me a lot. 😃
Next something happened that frightened the heck out of me. I had been prescribed Nexium HP7 a powerhouse of medication. It comprises 8 tablets and one has to take 4 in the morning and 4 in the evening for 7 days.
I had only taken a single dose of amoxycillin one hour before a dental check-up beforehand, never 2 different strong antibiotics, being amoxycillin and clarithromycin, the latter of which I was scared that it could raise my INR sky-high. I had to take both of these plus an antacid twice a day.
Well I have learned the hard way to ask for help, so, unusual for me, I got onto social media and asked trusted people if they could pray for me, because I had gotten it into my head that taking this medication would be harmful for me (given that I had read about side-effects such as nausea and headaches and other things, and mostly I was really worried about my INR).
Guess what happened?
I had no side-effects at all, and my INR which I measured often while taking the course of “antibiotics” went slightly down, rather than up!!
The research or literature about the effects of antibiotics on INR state that it can have no effect or can cause the INR to go up or down (which says it all) but usually it raises the INR.
Phew!
It ain’t over until it’s over. On the 29th May I am having a follow up endoscopy procedure to check that my treatment in January is still effective (which it is).
During the week of the13th May a nurse from the hospital rang me to check I that I am definitely going into hospital that day, and asked me if I was on a blood thinner.
Yes I replied and she advised me to see my GP to ask my GP if I have to come of it before going in. I said to her can’t the hospital tell me that and she replied “Speak to your GP.”
So I sent them an email and the message came back to stop taking my warfarin 2 days beforehand. No Clexane allowed.
So at least no going in for up to 5 days beforehand, with not taking my Maraven, and instead having to have Clexane injections (as the nurse said I may have to stop taking warfarin 5 days before the procedure).
This will mean dosing myself up with my medication on Wednesday 29 May after the procedure, then measuring my INR every day for the next few days afterward.
If my INR drops to below 1.8 then that will mean going to my local GP for the nurse to give me a painful Clexane injection, or as MM pointed out, getting the medication myself (in the syringes pre-filled) and injecting myself!!
I hope it doesn’t come to that, but I am glad for MM calming me down and saying perhaps he can give me the injections if it comes to needing Clexane.
The more I thought about it or imagined it, the more I thought “hey maybe I can do it myself, Serena Williams injected herself with medication and I admire her and others who do that, can’t I do it?”
Be brave Celine
I’ll see what happens. I am well aware that many poor people have to take a lot more than one tablet a day, and have health conditions that have to be managed. I wish all these people well.
“The force is with me and I am one with the force”, this is my new mantra.
I am hoping or willing that my INR is fine after the procedure because I don’t want Clexane. Say a prayer for me, for my good health, please, if you are so inclined to do so.
I am just me, little old Celine, but I’ve been through a barrage of physical trauma and stress as well as through bucketfuls of emotional and psychological trauma.
How I deal with all this is how I deal with my medication
I count my blessings every moment and remain positive and do what I have to do, to remain sane and well, whether I like it or not !
This keeps me alive, and I also revel in the fact that I have these opportunities and the capability to organize myself, to learn and to grow, and to help others: to the best of my ability. I am truly grateful for the amazing life that I have had and for my wonderful opportunities.
When the going gets tough, the tough get going.
About the Author
Celine Lai was born in Malaya (not Malaysia) and is the oldest inter-country adopted person in Australia. She loves reading and writing, and runs WordPress blogs and writes technical documents. She blogs mainly on Fascinating Animals.
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