Patient (self) advocacy
Today I took the step of escalating my situation to the patient care quality board of my local hospital. I have expressed my concerns at the pacemaker clinic and I am not satisfied with their explanations. I'm attaching below the 'redacted' letter I wrote.
Everyone in this forum has been super supportive that a "2 out of 5" right ventricular lead is not acceptable and should be replaced. I am now 3 months post op and the pacemaker clinic's current position is that it does not warrant replacing. Without your support, I probably would not have written this letter. I have reached 'peak anxiety' over this. I am hopeful that my letter will result in an objective, 3rd party review of the situation and if not, at least I have made my concerns known, early on in this process.
Thoughts and comments are welcome!
I am writing to request a patient care quality review of the above surgery I received at the XYZ Hospital on October 25, 2019. My understanding is that due to vein access and other complications encountered during the surgery, it was not possible to position the right ventricular lead to sense at the target 5 millivolts. Just before I was discharged, Dr. X disclosed that the lead was sensing at 4 millivolts, which he thought was acceptable and would only drain the battery slightly more than if it were at 5 millivolts.
As of my first visit to the Pacemaker Clinic on October 28, 2019, the right ventricular lead had slipped to 2 millivolts and has not improved since then. I have expressed my concerns at the Pacemaker Clinic that I am relatively young (56), have no underlying health concerns (the pacemaker is for swallow syncope, not a heart condition, per se) and that I do not feel confident that a right ventricular lead sensing at 2 millivolts will serve me for the rest of my life.
During my most recent visit at the Pacemaker Clinic on January 21, 2020, the RN explained that the Medtronic pacemaker is highly programmable and is currently set at a higher sensitivity to compensate for the low voltage of the lead. She also said that I am at the upper range of the programmable settings with only 2 additional settings remaining and that the criteria for replacing the lead would be that the pacemaker is on its last programmable setting. The pacemaker definitely meets my immediate needs and keeps me from passing out when I swallow.
From the research I have done, the risks of removing the lead increase over time because it becomes more and more embedded in the heart tissue. For this reason, I am very concerned about leaving it ‘as is’ for the longer term.
I am requesting a quality review by your office because I would like to know whether more could have been done, peri- or post-operatively to achieve a better outcome and if it is in my best interest to wait until it is absolutely necessary to replace the lead. Thank you in advance for considering my request.