Update - PM evaluation

Please do not lose sight of the bigger picture

by Gemita - 2021-06-11 05:28:32

Simon, I am unclear from your message whether a CRT-D upgrade on 12th July is definitely going to happen?   Your message is somewhat unclear although it seems you will be having further discussions with your team.  

Your words. ….”I am a bit discouraged in finding out the PM is functioning properly;  it means something else is going on” suggests to me that you have perhaps not understood or accepted a diagnosis of right sided heart failure for which they were recommending CRT?

We need to remember your recent pacemaker evaluation was based on your present device, a dual chamber pacemaker, which you are potentially due to have explanted.  CRT should give your doctors the possibility of better, more natural pacing which will be the ultimate test to try to find the best solution to treat your present symptoms.  

Even though your symptoms/ejection fraction might suggest it, I am unclear whether you have been officially diagnosed with right sided heart failure with preserved ejection fraction?  You did mention a diagnosis of right sided heart failure in a previous comment and that your ejection fraction was good at 55?  I note your team are saying your present symptoms - fatigue, edema, muscle loss, weakness - are not due to pacing/pacemaker syndrome.

In the meantime, I would try not to worry unduly about your present device which is clearly working as it should and not causing pacemaker syndrome, especially if it will be explanted in a few weeks time.  It will be interesting though to see whether the changes they have made to your settings help with some of your symptoms since any revised settings could then perhaps be set up in the new device if they suit you better.  

I do feel a dual chamber pacemaker upgrade to CRT-D would not have been originally suggested by your doctors if they felt it would not be appropriate for you now or at some stage in the future, but I believe this needs further discussion and understanding of what CRT can and cannot do for you.  For now I would try to move forward positively Simon, believing that a CRT device (with a defibrillator in case you need it now or in the future?) may help to improve your quality of life and to keep you safe.

Remember too that most pacemakers function as they are set up to do, they rarely fail, but that doesn’t mean that what is set up is right for you.  It is so trial and error and can take months, or even years to optimise the settings for each one of us, depending on our particular health condition which can change, and yours are very complex Simon. 

I recall you have Marfan Syndrome, which as you will know can affect the heart and other systems, so I think we need to consider all possibilities and I hope your doctors from all different specialities are engaging with each other to make a decision on the best way forward, because this is what is really needed.  As you know I have EDS (Ehlers Danlos Syndrome) with some Marfan Syndrome features and my doctors from all specialities are involved in my care. 

As always Simon, I hope for the very best for you and if a CRT upgrade is still on the table, I would take it with hope that it will provide an improvement on your present device (better synchronization between left and right ventricle), an improvement in your symptoms and help you to enjoy a better quality of life.

PM upgrade

by simonsimon - 2021-06-11 12:07:10

Yes, the upgrade is scheduled for July 12th, I am definitely going ahead with it. I wish my doctors spoke to me as clearly and reassuringly as you do. BTW you might be interested to know that my mother started the National Marfan foundation on our kitchen table in 1981. I created all the design work and newsletters for years. She also created the Coalition for Heritable Disorders of Connective Tissue of which Ehlers-Danlos syndrome is included. We are medical cousins of a sort!
 

I am going to message my doctor and confirm that I am officially diagnosed with right sided heart failure with preserved ejection fraction. You are right I have not completely understood or accepted that diagnosis yet.

Glad to hear you will receive a pacemaker upgrade

by Gemita - 2021-06-11 13:55:09

Simon, that is incredible news about your mother and I have done a quick search.  She sounds wonderful and you have done your fair share of the work too in helping to get the message out there.  Thank you so much for sharing this history with us.  When I search in future on EDS matters, it will have more meaning.  Yes we are certainly medical cousins.

I believe I inherited EDS from my late father who died tragically in his 30s of a massive stroke.  According to Mum, he was tall, thin, handsome and extremely "bendy".  He was a champion dancer and I have inherited his ability to dance, but not competitively anymore.  

I do hope you will get some meaningful answers from your doctors.  I don't suppose they see many patients with rare disorders, so we have to forgive them perhaps for holding back sometimes.  As I said previously, it is important that all specialities talk to each other occasionally to decide the best way forward.  My gastroenterologist and EP are often in touch with each other.  I can assure you there is a strong gastric-heart connection in my case (!)

Glad to hear you will receive a pacemaker upgrade

by simonsimon - 2021-06-11 15:25:54

Your father sounds like my father too :)   He died at 55 from surgical complications, the Marfan gene was passed on from him. Out of 7 boys (yes you heard that right )  3 inherited the gene and 4 did not.  Thanks for all the information!