I had my first review with my cardiologist today since my relapse in July. If you haven't read my very first blog post titled 'Am I Invisible?', you may want to read that one first.
My hospital stay in July was a bad one to say the least. I was treated like my symptoms were in my head, they borderline made me think I was clinically insane and they generally just didn't give a shit about my health (except the odd one or two nurses).
My meeting with my consultant today solidified this theory! Whilst in hospital they took 'routine' bloods and that's clearly all they were to them. They clearly scanned the results and chose not to look over them thoroughly because I had already been deemed the hypochondriac or labelled as anxious. They told me my bloods were fine and went on to trying to push me out the door. It came to light today though, when someone actually took the time to look, that my iron levels are depleted!
So you have a patient in front of you in a hospital bed struggling to breath and very fatigued among many other symptoms, which were to do with the PoTS. But breathlessness and fatigue are very common symptoms of anaemia and you don't even have decency to check those levels in the blood results. This could have resulted in a bit of relief for your patient with simple iron tablets. I am beyond horrified and disgusted! I am really trying to keep the expletives to a minimum here, believe me, it's really fucking hard! I am so angry and hurt that my quality of life meant so little to them that they overlooked simple blood results and left me to suffer!
Rant over, let's move on to positives.... my consultant gave me a prescription for iron tablets! Success! 🤦♀️ (Fun fact - my consultant advised me to take my iron tablet with orange juice as studies have shown that the iron gets absorbed quicker!)
We discussed the option of Ivabradine very briefly, however, she wants a 24 hour holter tape to see how slow my heart goes at rest to see if it is safe to slow my heart down anymore. We are in a bit of a catch 22 really, as soon as I stand up and move around my HR sits around 140-150, I'm getting out of breath and I'm exhausted but when I sit or lie down it went as low as 38 when I was being monitored in the hospital. I know this is the right way to go about things, I know I don't want to be taking to higher dosages of medication that could slow my heart down too much. But this just goes back to my previous blog post about how waiting effects our mental health. I have waited 3.5 months just to see her, and in that 3.5 months I have suffered multiple symptoms whilst trying to battle through uni and placement and trying to be the best mum and wife I can be. Now I have to wait for a referral to have a tape, have it on for 24 hours and wait for the results to analysed before my consultant will consider tweaking my medication. All the while I will continue to suffer, my quality of life will continue to be lowered and I will have to continue to fight through each day. Problem is each day that passes I question how much fight I have left in me.
I mentioned the increase in SVT's I've been having since this relapse which she sympathised was debilitating in itself. Every aspect of this is debilitating and I just want it to stop! A number of people are now questioning whether another ablation would be beneficial but that can't happen, of course, because my SVT hasn't been caught on tape for 5 years. So at the same time as my holter tape being fitted they are going to set me up with AliveCor (I think). It's an app they will install on my phone and then put pads on the back of my phone. When I have an SVT I pop my fingers onto the pads and the app will make a real time EKG and send it to my consultant! How fucking cool is that?!
She took me seriously, and she's knowledgeable in my condition and for that I am thankful I really am. I know she is covering herself and doing all the checks she needs to, but I couldn't help but leave feeling a bit deflated, I really thought I was going to have some medication increased or tweaked so I could at least start feeling better! I just struggle with the waiting times we are up against with the NHS. As a result my mental health is giving me whiplash.
I hit rock bottom last week, as my last post depicted. I picked up over the weekend and actually felt the best I have felt yesterday afternoon. I was elated, I was able to clean downstairs and enjoy it and I was able to laugh and play with my girls without become irritable through pure exhaustion. Today has been a reasonably good and manageable day despite being awake from 4am-6am with chest pain. By 6pm though, I had a headache, I felt nauseous and dizzy and my legs felt like jelly and I know feel just overall shitty. But tomorrow is a new day, I'm going to get an early night and continue to fight because I want to be a nurse. I have to be a nurse to look after people better than I have been looked after all these years. Patients need to be heard and they need compassion and empathy!
Opmerkingen