CHF - St. Jude ICD Recall - In need of feedback

Hello all....

Trying to digest the St. Jude recall.  I am a Veteran and doctor at the VA.  So, my letter arrived, and I have been in contact with the VA ICD Clinic.  Trying not to be alarmed.  HOWEVER.... 

My ICD is 5 years old and has "1.7" life left.  I had an abation a year ago, although painful and long, well worth the efforts of all.

I was told I was 80% dependant and been told the "dependant" patients are being replaced first.  However, I am not high on the list --- because it is either "A" or "V" dependant that are most vulnerable.  Fine.  Since I have CHF that is the reason I have the defib aspect.  

When my defib when off last year - NOTHING went according to plan.  No one at St. Jude would come to the Hospital and read the pacemaker --- so no one knew why it went off 3 times in 1.5 mins.  Because I was a veteran, I was not admitted to the local hospital.... had to be transported to my treating VA 2.5 hours away, by ambulance.

I, and my family, have always sensed I had a "lemon".  Now this?  So, the clinic is trying to explain, basically, I have all this because of CHF - so, even if my battery died... I "should" be okay for a while.  How long is a while?  

I am so very tired of feeling like I am second class because I am a Vet.  Do University patients get treatment first, then the Vets because our docs are University docs that treat veterans part time.

Should I be concerned?  How concerned?  I was told today not to expect to be put on the schedule until next year?  

I told them I want Jan/Feb... scheduled.  

The unit should vibrate... and you have a Merlin...  I was told I did not need to bring it with me to travel out of state... If it vibrates when I am out of state... what am I to do? 

I am sooooo confused.

Thanks for any clear, feedback.  

6 Comments

https://www.sjm.com/en/patients/arrhythmias/resources-support/battery-advisory

by Artist - 2016-11-08 22:33:23

I tried to paste the Url for the St. Jude website that covers the battery recall and couldn't do it in the body of this message, but accidentally found out that I could paste the URL into the subject line above. This information is under the "patient" tab.   

St. Jude Recall

by revcarol - 2016-11-08 22:39:10

Thank you for your link.... I will read what is posted, but I know MINE is under recall replacement.... I just want to know how other patient ICD's are being replaced and thier timeline...

 

Veteran

by Artist - 2016-11-08 22:52:20

I am a military retiree and have no trouble obtaining care from the local civilian hospital.  Do you have a service connected disability, or are you a retiree.?  If so, I would think you may be entitled to care in a civilian hospital.  

Veteran

by revcarol - 2016-11-08 23:00:40

Thank you for your feedback.  I am pretty high service connected.  

I would love to go from VA to choice, but keep my same doctors which are right next to the VA.

I feel like I am always fighting for better standard of care, for example, when my ablation was performed, my VA/University doc had to "fight" to get me authorized to have my procedure on the Univeristy side, in case I needed "advance technology".  I am just fed up!!! I don't know who to talk to or how or if I should change.

Is it possible to ask choice benefits and then turn around and use the same docs just to be treated at the university hospital next door?  

 

Get Some Advice and Guidance

by Artist - 2016-11-09 14:40:52

I would go to a local VA Administration office with the document proving your disability and get their advice about entitlements/requirements for using a civilian hospital.  Based on their advice, also go to the civilian hospital you are interested in and  discuss your insurance and VA status with them.   I assume you have a VA identity card.  At one point, I had to make a statement when I went for gyn appointment, saying that I was not using the VA for my treatment.  However that was about 6 years ago, so I have no current information about that situation. Fifteen years ago, I used the VA hospital in SA, Texas and was very displeased.  I was sick and they would not give me an appointment for 3 months.  I told clerk on the phone that I would either be well or dead by that time.  He got snippy and said that he could just disenroll me and would you believe it, the next time I checked in with a VA hospital, I found that I had been disenrolled without my permission.  Problems with VA hospitals have received some attention and improvements made, but there are still a lot of problems.  I have a retired military friend that uses a VA hospital near West Palm Beach, FL and she gets excellent care.  I think that she has a 50% disability and that makes a difference in care priorities.  I also get excellent comments about the VA hospital in the Washington, DC area but again that is from a woman, that is retired and also has a high disability rating.  Bottom line is get help and advice regarding the current entitlements to use civilian care facilities.  I assume that if your doctor at the VA hospital  is also practicing  at the civilian hospital, it should be no problem getting them to see you at that hospital as long as your insurance is accepted.

My device recalled too!

by jpope5 - 2016-11-14 22:10:18

I have a St. Jude pacemaker and just got a call from my doctor. There is an FDA advisory about premature battery failure. My doctors say swap it out within 2 weeks. I already had one of the defective leads and it was horrible. Freaking out here. 

I am 100% paced in my ventricle. I guess that put me at the top of the list.  I was thinking about waiting, but if there is a wait list maybe I should get it done with now?

Im not a veteran or anything. I'd like to hear from someone who is affected by this recall. 

Jeffrey 

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My pacemaker is intact and working great.