Been some time since I posted on here, I hope all are well and starting to get back to a "normal"? I went to Sheffield Hallamshire PH specialist hospital a few days back and had the usual test Walking between cones did better than ever! Spirometry test No change! Blood tests good! ECG AF rearing its ugly head!
MRI This was to look at my heart as they were concerned that it may be worse due to my High PH. The MRI nurse explained all what they wanted and asked if I had a letter asking if they could do some research MRI as well which I did not but was happy for them to do it if the wanted. Without the form they cannot? I got changed and put on my gown got onto the MRI bed and the nurse put on the ECG leads so they can sync the MRI to my heart beat. Then (yes only me) my nurse said "Oh dear!" the pit in my neck started filling up with blood! It was not bleeding before but just started? So, she ran off and got a dressing and tried to quill the flow then called over the senior man there and they looked at the blood and manged to stop it and I explained I am on thinners and I have been getting blood spots on my pillows? More so since I moved over to Apixaban? Thick pad and double sticky tape they carry on. Plenty of burps pops Pharps from the machine and 20 mins later I am done. Fed up with "Breath in and Hold!" for the zillionth time.
When I get to see the consultant a wonderful chap and Professor. I can see 2 images of my heart pumping away. "You are a real Mystery!" the heart has not changed at all which is great news however my PH is still in the same condition as it was 3 years ago which is high! He told me I am the only person he has seen in this situation and said whatever I am doing keep it up. I have changed my diet and drinking far more water. Not sure if my long-term steroids are doing anything but they come to an end in a few months.
The Wife could not come into the ward as the Covid restrictions were still in place. Next appointment 11 months. BTW when we got home the request for MRI research letter was on the floor
Be Well
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Offcut
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You sound a good deal more upbeat than usual,hopefully that stabilisation of the PH even though still high can at least be maintained as with your heart condition.shame about the missing letter but you got the most important observations and diagnosis done which was the purpose of the visit and managed to avoid bleeding out on the table which i suppose is very much a bonus.
I would always expect a “but” Offcut. Pleased to read you are doing well in some respects but a shame not so in others. I also have AF and take Rivaroxaban for that. The bleeding sounded alarming but you seem to take it all in your stride. You’re an enigma that’s for sure. Take care, good to hear from you. Xxx
I have done a load of online meetings with all sorts of organisations over how the chemist and NHS can work better with each other. One on a new drug and how it would work to me as a patient but cannot say anymore on that NDA?
Good to see you back on site Offcut, sounds like the mri scan went well, I cant go in there anymore am too claustrophobic. At least they are keeping their eye on you and it sounds like you are stable, take care x
I do know about your lungs and many and varied strange issues; I hadn't realised you had pulmonary hypertension too. So glad it's holding it's own. You really are an inspiration.
This might sound a little macabre but I am not worried about dying and I do believe that not having any extra worries is good for your mind and body. I was properly diagnosed with PH in 2013. As you are aware I had a constant battle to get anything done apart from NORMAL responses to presumed conditions? The more I think about it, my opioid removal course has been a life changer for me also. I have learnt mindfulness and distraction techniques.
Thank you; Sounds good - I've just been diagnosed with PAH and I'm just trying to understand it and what it entails. Take care and all good wishes and best of luck.
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