Hi all, having suffered for around 12 plus years with AF which was greatly undiagnosed for quite a few years I have now got to a point where I have now found by default (after reading a letter from my EP to GP) while reviewing my health records on-line that I have progressed to apparently suffering Heart Failure 3/4 on the NYHA Scale. In day to day terms I have quite suddenly become terribly breathless to the point I have been hospitalised recently, despite which none of the"Healthcare Professionals" have taken time out to discuss what is going on despite my asking. Indeed just a few days ago I had an MRI for a totally different reason not related to my AF which required my Pacemaker (PM) to be turned off during the MRI process and back on again afterwards. The technician who underwent the process was quite concerned with my condition and asked me if I knew why my PM had been re-programmed to where only the bottom chamber of my heart was being paced, a situation to which I was totally unaware, he was so concerned he sent an urgent email to the Pacemaker Clinic at the other hospital who "look after me". Within hours of the email I received a telephone call asking me to attend the clinic ASAP being told I was now in normal sinus rhythm and as such my PM required to be reprogrammed. When I attended the clinic I asked who, when and for what reason had my PM been reprogrammed to be told that in February during a routine clinic appointment the technician decided as I had been in fast AF for more than a year it was better to turn off the pacing to the top chamber of my heart, this being done without informing me or anyone else, further no record of the same was noted on the Patient Information Card I carry on my person. My situation is further exasperated by virtue of discovering last year again greatly in error my Thyroid was Hyper the result I could not be prescribed the necessary drugs to try to slow my AF. Only now is my thyroid under control but I fear the damage to my heart may have been done. Finally, a question on my PM, the rate is set to 60bpm, my natural sinus rhythm is apparently very slow at around 34/36 and I am now in normal sinus rhythm, can someone please explain why when I check my pulse with a Pulse-oximeter it nearly always settles around 47-50 when the PM is set to 60.
Sorry to go on but there's nowhere else for meaningful information.
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Cypbill
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They tell me that my pacemaker is set at 60, but my resting heart rate is usually about 52.
My history is very similar to yours... and I got referred to a cardiologist after diagnosing myself, logging a pulse rate of 30 a night (and an SPO2 of 75%).
Well I cannot answer the 'medicals' details you have posted but wanted to say I feel very sad as to how you have been 'left in the dark' re. the circumstances of your health.No pun intended but we are no longer 'in the dark ages' although you might be forgiven for thinking so .Lack of communication between patient and doctors/technicians is still a very serious problem and it is therefore worrying. It is hard work to try and keep on top of it all.
One does need to be proacative when dealing with health care profesionals. Always ask for copies of any letters and reports to be sent direct to yourself. This is your right. I have a huge file of all mine since diagnosis in 2004.
Yes. I do this myself but there are people who are alone when they visit hospitals and simply do not have the stamina make sure it all happens. It is an improving system but still far from good.
Whilst I can't answer any of your queries re your PM I have to agree that your treat ment and the communication between yourself and your medical team leaves alot to be desired.
Good reasons here to ensure that you have copies of correspondence between hospital and your GP
Hi all who have responded, thank you all for your thoughts and comments.
I have been in touch with PALS who have made a number of enquiries on my behalf, not by way of a complaint more to try to establish just exactly what is going on. I am and PALS similarly aware that none of the departments and or individual experts seem to be able to join the dots and work together whilst considering the patient as a whole or their individual issues and circumstances. Each go about their own respective business doing what they do (usually because that's what they do) not always because the particular treatment or path is best for you the patient but merely because that's what they do. I quite often feel it's like pushing water uphill, worst still, the "Experts" really don't like being asked too many questions or patients with an opinion. Whilst this forum is a fantastic source of real life stories and experiences, should people with complex health issues really have to rely on such a medium for advice rather than the same being offered freely and in good faith by the experts.
Thanks again all and if anyone can come back with and explanation as to the Pulse-oximeter and Pacemaker question I posed in my initial post I would greatly appreciate your comments.
Hi Cypbill was your pacemaker fitted as part of the treatment for af or a preexisting condition. I have AF and have been told a pacemaker may be the way to go
Hi and thanks, you're saying precisely what I keep asking yet just can't seem to get a clear and definitive answer to. As by way of example, a short time ago (30 mins or so) I felt dizzy and got the warm whoosh, when I checked my pulse both manually at me wrist and with the pulse-oximeter it was around 33bpm. With a couple of minutes I could feel my pulse and watch it recover to around the 50 mark yet only 48hours ago the pacemaker clinic said my PM was set at 60. I don't understand.
Not sure if this will 'work' but you might try private messaging Dr. Jonathan Pitts Crick, cardiologist, who sometimes responds to a post on the forum so must be a member.He contacted me once .Was helpful and understanding.
Firstly, please don't think that all pacemaker departments are the same. The staff should inform you of how they are setting your pacemaker, so do ask if the details can be explained to you at the end of your check. In my experience, we love being asked questions and enjoy the interaction with patients, it's what makes our job so great!
The second point is that of your heart rate. Although your pacemaker will be set to 60 bpm, it will allow your own/intrinsic rhythm to drop below this rate, as it would naturally at times of rest. Then at that pre-set lower rate (sometimes as low as 40 bpm) it will act to give you a heart rate of 60bpm minimum. This is so that the heart be stimulated artificially only when necessary, thereby making things more physiological and also preserving battery life.
I hope this helps somewhat
(Please also note that I can only make a general comment in this situation )
Hi Fibfab, thanks for your extremely helpful and clearly knowledgeable comments, exactly what I was looking for. I agree wholeheartedly with your comment in regard to my experience in the PM Clinic. On the technical details you kindly provided, this makes sense and would possibly explain the differences I have seen after my last visit to the clinic on Thursday when my PM was reprogrammed to Mode DDDr as far as I understand, since which my pulse at rest is around 48-50 (with the occasional dip to 34-37) however when I move around it increases to 80-90 and settles fairly quickly to the 48-50 rate when I simply stand still.
I did explain quite forcibly on Thursday to the PM clinic staff just how important it is that they communicate with patients particularly where changes have been made to the PM Program, otherwise how can either party feedback information relevant to said changes whether positive or otherwise. Thanks again I really appreciate your input and help.
This is good information Fibfab My husband had a 2 lead PM fitted last Thursday after an emergency when it was found his heart was having long pauses. We are now back at home but I have no idea what it is set at and where I should look in the paper work. Would you have a clue as to where or who would tell me?
Usually your husband will have a check up in 4 - 6 weeks where they will check the leads have implanted and are working correctly and then they'll 'tweak' the settings. The tech told me they set it initially to 'factory defaults' but we're all a bit different.
Hi, how is your husband now? I had a 2 lead pm fitted after heart pauses ( diagnoses as heart block 2 ) almost a year ago, Does your husband have any other heart issues? I have been in a scanner and had lots of tests and been told my heart function is normal? However the last few days I have noticed my heart rate is around 85 and I feel a indigestion type pain around my heart so a little anxious. I have never seen anyone complaining of heart pain if their heart is not performing correctly with if course the exception of having a heart attack which I don’t think I am having .
It is now nearly six months since my husband's in plant and we have had the six week check up and that is all. At the check up the operator said that one of the leads had moved slightly and they would call him back in three months instead of the usual six to see if it was now stable. It is now six months and we are still waiting for an appointment! My husband seems much the same as before i.e. 'I'm fine don't fuss' you get the gist? I guess the answer to your kind question is thank you for your thoughts but you probably know as much as me 😉
Morning DaveBr, my PM which is of the two lead variant was recommended to help with two issues. The first being PAF and the second, my heart rhythm was periodically very slow (low 30’s) and stopped frequently at night when I was asleep, 32 times for up to 6 seconds as recorded on the Reveal Device I eventually had implanted.
Gosh you have had an horrendous time. I am fed up with the "experts" telling me I was fine and nothing to worry about, only to find when I finally said enough is enough after seeing this rubbish cardiologist understudy, through a series of tests i insisted be carried out, that they did find things! Be proactive about your health always! If you feel something is wrong insist on an investigation. Let them slag you off behind the door on your way out. Who cares! Nobody wants to get to a point later down the line when things turn bad that could be addressed and sorted sooner.
Personally, I feel, unless you are at deaths door, have hard core life threatening diagnosis, they don't seem to be bothered! Just my opinion. I basically got told that I would know if I had heart failure! Lol. Erm thanks for that!
Hi Cypbill. What model PM was implanted? It will be on your ID card. Have you had your AV node ablated so you are PM dependent? If not, it may be worth talking to your EP and asking whether having a pace and ablate would help your heart failure. With CRTP the PM does all the work and adjusts according to your level of activity. It’s normally set between 60bpm resting and 130bpm maximum. If this is done your pulse cannot go below the lowest set rate. You only need two leads if the node has been ablated, one in the right and one in the left ventricle. The PM will keep them synchronised and responding to your activities throughout the day and night. You can carry on a normal life. Always tell the physiologists on arrival if you are happy with the settings and if there have been no changes it can be left. Sometimes they can be tweaked to respond to your daily needs which makes life even easier. In many cases heart failure symptoms are much improved, therefore life is improves. Please talk to your EP or physiologists to find out exactly what type of pacemaker you have and whether you have any further options to help improve your symptoms.
Hope this is useful and good luck. Don’t suffer if there are more options. good luck. Please let me know how you get on.
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