Hi
I have had Diffuse Systemic Sclerosis for about 14 years and been told very recently I need a pacemaker. Just wondered if anyone here has had one fitted and what their story is, i.e., why pacemaker had to be fitted, , how was the procedure and how they are now. Thanks in advance 😊
Yes, I have a Pacemaker that will soon need its battery replaced. I needed it because my pulse dropped to very slow . My heart has been ticking steadily now for over 8 years Good luck. X
Hi, thanks for your reply and delighted things have been steady for you.m 👍 I am quite concerned tho as I still have thickened skin all over front of chest and wondered if this would cause an issue for insertion/healing 🥴
I can’t say with authority, but I think it’s best to mention to surgeon & ask Rheumatologist for his opinion ,though it’s just slipped under the skin &the ‘works’ get tucked away into the heart . My skin healed beautifully as the surgeon proudly told me he’d been taught by a plastic surgeon how to close incisions!
Am so pleased it worked out fine for you. As the different health specialists don’t see many of ‘us’ in their working career, I always feel very anxious with any procedure. Over the years, even although my rheumatologist has explained the difficulty of getting cannulas in to each of the departments I have had to attend, to date, when I have arrived always feel the information has fallen on deaf ears with them thinking it’s just a routine cannula fitting with mild difficulty and am just a scared nervous patient until they attempt the procedure and fail. The problem being they are inexperienced which does not help my future confidence! Sorry… I have went off grid a bit but hopefully you understand my concerns with what should be quite straightforward procedures for ‘normal’ patients, can be quite different for DSSc ones!
Hello again Eden, yes. I’ve experienced a few ‘horrors’ . Just one tip I found when having an operation is to emphasise the need for keeping warm. They'll have a special warm air circulation bag to keep all extremities warm & relaxed? or they’ll lose the telemetry from the finger monitor, which seems to cause them concern! It also helps/stops with the Rigors that I suffer during the operation. Good luck, it will be a great help, I’m sure. X
HIGood luck with your procedure.
Make sure you have the operation under general anaesthetic (I'm sure this will happen)
I have diffuse systemic sclerosis & had a procedure to insert a tube into my heart for a check I needed.
I screamed with agony as my skin was so tight & the lcoal anaesthetic didn't seem to be working.
At first the surgeon thought I was being soft but then realised there was something more. He really struggled to insert the tube & nearly abandoned the procedure as he could only get it in half way. He asked me if I wanted to continue or should we stop. I replied to continue but the poor nurse whose hand I was squeezing must of had lots of bruises later!
He said as my skin was so tight the procedure should of been done under general anesthetic!
I know why as if this hadn't worked my next procedure would of been delayed.
This surgeon spoke to my team to make sure they never sent a patient to him again for a local anaesthetic with skin so tight! Xx
Apologies for the late reply.
Many thanks for that information and your good wishes. It’s all the things I was worried about confirmed! I spoke with my GP today at routine bloods and have arranged an appointment with my rheumatologist to get all this discussed. Been down the road far too often of different health professionals having not done their homework on scleroderma prior to seeing me or have little or no experience of working with a scleroderma patient. Am at the point of absolute dread with any procedure and all I want is just to be listened to and heard with a plan tailored according to my needs.
Hello Eden, I have sjogrens and limited systemic sclerosis. I have a pacemaker for the past 3 and half years . I got mine for complete heart block. My pulse had dropped to 30bpm. I was awake for the operation and I felt nothing , just pressure at times. They need patients to be comfortable so they dont move about. I healed well and felt so much better having enough heartbeats. Am less tired and the breathlessness is gone. I will need a new battery in about 6 years. 90 %of the time I forget I have it in there. You will be fine and feel it is so much worth it when it is done.
Hi purpleknitter99
Thank you for telling me of your experience, much appreciated and reassuring 👍 So glad to hear you are noticing a positive difference. Do you mind be asking, was the heart block systematic sclerosis related and was your chest skin tight where they placed the PM ?
Hello Eden, I hadn't been diagnosed with Sjogrens or limited Systemic Sclerosis when I got heart block but the cardiologist was unable to find any reason why it happened. I did not have any of the usual causes . However the following year when the autoimmune disease was discovered two rheumatologists told me that it would have caused the heart block. I guess by fibrosing the conduction fibres. I don't have hardened skin in that area. I don't think it would be a problem for the surgeon. They make a pocket in the mussels to hold the pacemaker. These days they are not too big . Mine does not show and the scar has healed well and very faded now,
I need some medication advice ( suggestions ) 
Does anyone have Iron deficiency anaemia and had to have iron infusions ?
Does anyone else have Raynaud's and photosensitivity too?
Esa face to face
All new to me! Help! 
