Boston Scientific minute ventilation problem

BS MV problem

by Grateful Heart - 2018-02-28 00:03:24

I'm aware of the MV problem.  My CRT-D is a dinosaur so it is not on the list.  Yes, turning the MV off will make a difference as you have experienced.

Each time my wonderful NP called for a tech to check my device, whether for a surgery or a problem with my device, it has always been a different tech.  In the past 9 years, I've had 2 that were really good and knowledgeable.  They explained what he was going to do before changing any settings and only if I agreed.  

I've had a few alerts to check a lead and my NP said she would bring in a tech to check the alerts if I wanted.  I always say no....it's ok.  I dread the thought of getting another one who acts as if he doesn't even want to be there.  You can't teach caring and empathy.

One showed up right before a surgery to turn off my defib and he was looking to leave and not stay until after the surgery so he could recheck the settings and turn the defib back on.  He blamed it on the hospital's protocol.  I turned to the anesthesiologist and asked if that was protocol.  She said no and gave him a look.  I said "never mind, I'm not gonna do this....I'm leaving".  She looked at the tech and she was not happy with him.  She told him to stay.  Nothing like a stressful confrontation right before surgery.  Later, they had to page him numerous times to come back and turn the defib back on and recheck the settings.  My husband saw him sitting in the cafeteria while they were paging him.

Sorry, I went on too long about that.

I thought the fix for the MV was supposed to be sooner than October.

As far as BS customer service goes.  I know they are hesitant to say much to the patients, they don't want to "upset" us.  Little do they know, that only makes it worse when we need information.  I've been able to have conversations with them a few times when I express to them I understand what we are talking about and need info to make a decision for example:  which procedure to have for a vestibular test (turns out not the ENG but the VNG for us).  She gave me that much and then suggested I have the testing doctor give them a call.....since the testing doctor wasn't sure how to proceed.  The doctor did call and she was great with the test.  A first for her re: PM/ CRT patient.  

Makes you learn alot about your device out of necessity.

Grateful Heart                 

MV Sensor

by PacerRep - 2018-02-28 07:40:36

Are you pacemaker dependant? If not, make them turn it back on. Also, which leads do you have? The risk is significantly increased with Medtronic or Abbott/StJude leads. If you have another manufacturer, it's doubtful it will affect it. But if you are dependant, then don't mess with it.

As far as your tech's go, keep in mind that everyone has to learn somewhere.....but that doesn't have to be on you. There is a certification out there by the Heart Rhythm Society called "Certified Cardiac Device Specialist." I would demand that the next person that touches your device has it if you are having issues. They have to know a lot more about the nuances of the device than your common rep.

 If you get some one with the CCDS certification, they will certainly know what they are doing, it's a very difficult test. Here is a list of everyone in the world that has it, if you want to look your tech up.

https://www.ibhre.org/Allied-Professionals/CCDS-Exam/Recipients

Thanks Pacer Rep

by Grateful Heart - 2018-02-28 11:59:40

The certified list will be useful.  Too bad they don't list the countries and areas they cover along with the names. 

Judging from the 3 postings above which are located in 3 different parts of the US....this seems to be a widespread problem regarding techs.  I'm assuming you are on that list.  Any chance you are located in the NY area?  :)

We really do need expert reps when it concerns our hearts.  Very frustrating.

Grateful Heart

Thanks Pacer Rep

by Skeet - 2018-02-28 13:00:49

I think your information about reps will be very helpful. I edited above, but I have Guidant Leads from '07. I don't believe my MV with this new pacemaker has ever worked correctly. I live in the Hill country. While cycling, my pulse was always going down; when I believe it should have been holding steady from heavy breathing, and then rising when I am going easier. 

Thanks All

Lol yeah I’m on there

by PacerRep - 2018-03-01 22:57:52

im a glutton for punishment lol. I’m not in the NY area. I’ve always strayed far away from giving up my location and company on this site, I don’t want any advice I give on here to be looked at as a sales/marketing tactic.

For that MV sensor, ask them to recalibrate it next time. It’s simple and only takes 2-3 minutes. Talk to your doctor if they won’t tirn it back on 

MV Woes

by Chooka - 2018-03-16 08:05:15

I was implanted with a Boston Scientific pacemaker in 2014 and the Minute Ventilation was a problem from day 1. This is my 2nd pacer from BS. The first one didn’t work well either, though my cardiologist didn’t thoroughly investigate it because he assumed the problem was me and not the device. 

I had the MV function turned off 4 years ago and it has affected the way I exercise. It has also left me feeling very bitter and angry. 

I have had a pacer since I was 17 years old (always Medtronic until 2007), and I am now 50 years old.

I had a His Bundle ablation in 1985 (high voltage electric shock in those days), which left me a house-bound invalid for around 18 months. I then had a sinus node excision at 19 (open heart surgery), and my life completely changed for the better.

20+ years later I again found myself becoming more and more incapacitated due to my heart remodelling (a product of right sided apical pacing for so long). I took up marathon training (walk/run technique), and competed in 3 NYC Marathons. There were plans for a 4th NYC Marathon in 2007, until I was implanted with my first BS pacer and it has been downhill ever since.

I’m not sure I trust BS claims of a solution being in the works and I’m fearful of coming out worse if I allow them to try and fix it given some of the disastrous results I was sent home with 4 years ago. Every visit they promised me a solution, and every visit ended in tears. Ultimately they turned off my MV and washed their hands of it claiming “problem solved”. I still have 7 or 8 years of battery life and will be close to 60 at my next replacement. 

Mv Senser turn off

by Kat20 - 2018-04-01 13:11:48

Hi 

I too have been having problems since this adjustment a couple of weeks back , I can no longer run like I did, get breathless very fast, it has defiantly affected my quality of life. I desperately want them to turn it back on again. I am making an appointment to see my cardio clinic ( nhs uk ) . I really struggled with a 10 k run this weekend and do not belive I could manage a half marathon let alone a marathon. I am so diasappointed as I was feeling brilliant before. 

Minute Ventilator turned off Boston Scientific Pace Maker

by Slugbait - 2018-04-04 17:48:13

i had been training for a marathon and my training was right on track even with my recent diagnosis of Atrial Fibrillation. Then the letter from the Pacemaker Clinic informing me about some fainting spells due to an issue with the minute ventilator component of the BS Pacemaker. Head of cardiac electrophysiology ordered all minute ventilators to be switched off. Now! Every run is work. I have to start off walking for about a mile, and then into a jog, then into a slow paced run. My 10k runs are about 12 - 15 minutes longer. No acceleration at all. My threshold pace is now about 140, any faster heart rate gets quite irregular. It’s now a waiting game, Boston Scientific is saying maybe October if the regulators okay the patch. Just sending good vibes for anyone else dealing with this new reality. Peace✌️