Have any of you recently had a heart catheterisation recently please? Which vein did they use (usually neck, groin or arm/wrist)? What was the experience like for you as I have to have this done on 20 June 2018 - eeeeeek.
I have Pulmonary Fibrosis (PF) - diagnosed Jan 2017, mine is caused by my immune system attacking my lungs so I am on chemo for the duration. I was diagnosed in April 2018 with Pulmonary Hypertension (PH) - my blood pressure in the arteries in the lungs are at approx 75%, apparently normal range is 25% or below. The catheterisation is needed to check the exact pressures in the arteries of the lungs, plus to see if my heart is under any stress now.
I am keeping my fingers crossed that the heart isn't showing any signs of stress at this stage.
I also have CREST syndrome, also known as the limited cutaneous form of systemic sclerosis (lcSSc) which is a multisystem connective tissue disorder. The acronym "CREST" refers to the five main features: calcinosis, Raynaud's phenomenon, esophageal dysmotility, sclerodactyly, and telangiectasia.
The CREST poses my specialist team with complications in treating my PF and PH.
I have just had a week in hospital as my blood pressure measured by my doctor on 22 May was 92/66, on 25 May I almost passed out twice, flashing lights the lot. I went to A&E and was admitted for a week. They said the cause was my low oxygen levels (measured by me at 71 at the first feeling of passing out and at 74 on the second, this was whilst sitting and resting, hadn't been exherting myself). They started me on Bosentan for my PH which also lowers blood pressure so my diastolic blood pressure measured anywhere between 31-50 over the week, ending up in the 60's by the very end of the week so I was able to come out.
If anyone can help regarding the catheterisation question at the beginning that would be much appreciated.
Wishing you all well this lovely sunny Sunday afternoon.
Regards, Karen
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karenjenna1146
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Hi Karen I had the catheterisation a couple of months ago at The Royal Free. I had it done through my groin area. I was awake for the procedure as my cardiologist prefers to have his patients awake. Like you I have CREST and I have Diffuse Cutaneous Systemic Sclerosis. My test revealed that i had PH and my heart is seriously effected and now my lungs.
The experience was fine the only thing that I found scary was when they went to take the biopsy pieces of my heart I felt a burning sensation and felt uncomfortable. But luckily because I was awake they could tell I was under distress and my heart wasn’t coping.
Are you going to be awake or sedated for your procedure?
But like I said my overall experience was fine and I went home 2 hrs later and had no overall lasting effects thankfully🤗
Hi Cole, many thanks for your reply. I will be awake, and my specialist team think it may be done via a vein in my neck but not 100% sure. I will be told at the pre assessment obviously. Your message has calmed me regarding the procedure itself whilst awake. I will just have to be brave lol.
Do you mind sharing what they are doing about your heart being under stress now? I am trying out some treatment for my PH and have medication for my Raynaud's and esophageal dysmotility, plus take Naproxen for my connective tissue problems/pain?
At the moment I have had chemotherapy which wasn’t successful. Now I am having Rituximab infusions and have had the first initial 2 doses. My Inflammation markers were high especially the heart numbers. They have dropped but still not by enough. I’m also on high doses of Beta blockers and diuretics. I also have a Heart Reveal Device in my chest which is linked to a monitor which is linked to the hospital. So if they spot something irregular they will call me in straight away. I’m due to see my cardiologist in August although I may see him before. With PH it really is trial and error with the drugs especially with the Scleroderma in the background. The problem is PH is so rare and often many people confuse it with PAH which is different.
But definitely ask the question on the heart forum and see what they say.
But Goodluck with your procedure and it’s definitely wise that your awake and hopefully if your cardiologist is like mine he will talk to you throughout the procedure.
I have done this twice. The first time was through my groin, the second through my neck. For me, the groin experience was far better when it came to my comfort. Rather than me going off on a tangent, is there anything you want to know specifically?
Thanks for your reply. No nothing specific, just wanted to know how the experience went for others. I appreciate everyone's experience will be different. But forewarned is forearmed. At least I can bear in mind what people said happened to them and think it's ok this isn't just you that has happened too during the procedure I suppose.
Thanks for the good wishes. All the very best to you too.
Thanks Cas, I hope so too. I came out of hospital on Friday from an 8 day unexpected stay and my hubby was rushed in on Monday. He is home now. Could do with some good news at the moment. Hope the outcome of the procedure will be the pick me up we both need at the moment. Take care hun xx
I have had this twice at the Royal Brompton once in my groin and second one in the top of my arm. Didn’t ‘enjoy’ the first one but the second one was much better and quicker.
I have Mixed Connective Tissue Disease that has caused PF and in turn this has caused PAH. After the first RHC I was put on sildenafil and after the second one macitentin was added. My pressures are now so controlled that they say they are that of a ‘normal’ person. One less thing to worry about for now as long as the medication keeps doing it’s stuff!!!
Try not to worry about your RHC - I think I was really tense for my first one which made it hard to find the right place to go in. Also I have crap wriggly fine veins/arteries!!!!!
Thanks for your post. Sorry for the delay, hubby was rushed into hospital, he is home and all is well, thank goodness....
Wow that's great news that the meds have you so controlled, nice one. As you say it's one less thing to worry about. Nice to know that there are medications that can really work for these problems.
I had a right and left heart catheterisation last November at the Bristol Heart Institute under mild sedation. They went through the groin, and I was fine. They increased the sedation at one point because I was uncomfortable. They diagnosed pulmonary hypertension, a small aortic aneurysm, moderate aortic valve stenosis. I also have problems other than lungs as I had congenital heart disease. They are treating me with digoxin and candesartan as well as other medications for heart and lung problems, but no surgery unless the aneurysm worsens. The RLHC was absolutely the least of my worries. Good luck
Many thanks for your post. So pleased to hear you had no pain or discomfort, that's brilliant. Hope mine is like that lol. It will be what it is I know. I feel ok about it all.
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xx
Has anyone had an unusual cause of PH?
Fast Heart Rate
Pulmonary Hypertension
General Anaesthetics for Pulmonary-Hypertension patients
Pulmonary Fibrosis
