I thought I would let you know because you have been so supportive of me, particularly since Christmas when my pulse dropped so low.
Friday I finally had a pacemaker fitted.
I'm sore but recovering at home and beating at 60 👍🏽
My oxygen levels are increasing so I am hoping that once the antibiotics are finished and my INR is back up I will feel better re APS too.
I hope the constant oxygen and pulse will help stabilise my APS symptoms. And even my INR, which can be anything from 11.2 - 1.9 over two weeks and everything in-between 😂
I'll keep you posted - thanks again everyone, Wendy 💋
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WendyWoo50
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I'm so glad to hear you've finally got the pacemaker in place and that your heart rate and sats are improving. Also glad to hear you're home as being in hospital is horrible and you will recover much more quickly now you're home and in your usual environment.
Do you feel much different in your body now your heart rate is better? I know you said that your HR and sats are up but I mean how you feel in yourself and in the rest of your body. When I was finally given oxygen, I could literally feel the life coming back into my body, from my head down to my toes!!
I wish they had a pacemaker that could slow the heart rate down! We have many symptoms in common but your heart rate was too low and mine is much too high. When your hearts not working right then it will affect your whole body, so hopefully you will begin feeling better everywhere as your heart rate and oxygen saturations improve.
I wish you a speedy recovery and really hope that things keep improving for you.
Thanks Claire, I'm tired and pained post op on one side but on the other side I have more energy if that makes any sense at all lol
My cousin has the racing heart, she says it's awful. There must be some pills that will help. What about beta blockers? Don't they help? Hope u find something to help u.
Mum said I look better and have more colour! I'm sure oxygen will make a big difference! Keep in touch and let me know how u get on did o2 help ur aps at all? 💋
Yes I completely understand your description as to how you feel!! It's great that your mum can actually see that you're looking better. It took me several months to get over my operation but the oxygen just seemed to bring my body to life again. Now the pacemaker is keeping your heart rates up, you will be getting more oxygen thru your body, so you should keep on improving.
Unfortunately I can't take beta blockers because I have a low BP and when I tried them my BP went so low I couldn't stay conscious!
I think that the doctors are missing something. I just saw an autonomic dysfunction specialist who told me that a couple of my symptoms could be attributed to auto dysfunction but that most of them aren't. My heart rates always go up with my bodies need for oxygen and when I do something physical my oxygen saturations always drop and then my heart rates speeds up in order to compensate. The specialist told me that you don't have oxygen desaturations with autonomic dysfunction or pots, you can have very high heart rates with it, over 200bpm but your oxygen saturations will not drop.
I did already know that and I've been repeatedly telling all the different doctors I've been seeing that same thing, since being admitted to hospital in Aug 2016 with excessively high heart rates and oxygens in the 70s%. The doctors always believe that they know your body better than you do unfortunately and so b
my symptoms of acute breathlessness and oxygens in the 70s% were brushed off as being POTS related. I've only had to wait almost another two years to have the fact that you don't have oxygen desaturations with autonomic dysfunction confirmed to me by an actual autonomic dysfunction specialist! 😵
My symptoms match that of pulmonary hypertension, or possibly of cardiac syndrome X. Some days the chest pain and pressure is horrendous and on these days even the oxygen doesn't relieve the chest pain/pressure or the breathlessness. I feel like I'm living while running on a treadmill, with heart rates between 120 and 160 when only doing very basic tasks around the house. By the time I've washed and dressed I've soaked my bra, top and hair in sweat, so end up having to wash again and change my clothes. I find my symptoms are worse when the weather is hot too.
Don't get me wrong, I have improved, with the help of the oxygen I am doing more for myself and have been able to get in the garden and watch the birds etc but everything is such an enormous struggle and on the bad days I do get quite down at still being so unwell. I know you understand that feeling because of the struggle you have been thru for so long with your low heart rate and APS symptoms.
The oxygen hasn't really affected my sticky blood issues however getting off Apixaban and back on Warfarin at the higher INR level has made a big difference. When my INR is above 4 I'm clear headed and mostly clot type pain free. I can actually tell if my INR has dropped below 4 and start getting symptoms again when it's down to 3.5. Can you imagine how horrendous I've been feeling on apixaban for the last year and a half, when it only gives an equivalent INR of 2.5.🤒
Anyway, I will not allow myself to dwell on the negative, I am slowly but surely improving on the person I was two years ago, who was practically bed bound. I have been so grateful for the support and kindness I have received from yourself and all the other lovely people on this website.
Please keep me posted on your recovery and also whether you have improvement with your APS symptoms, now that your heart is working better.
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