Annual Check

I have cardiac sarcoidosis, too.

by laughingarcher - 2018-01-16 19:01:39

Are you on the Stop Sarcoidosis Inspire website?  I've learned tons about non-drug and alternative treatments like nutrition, supplements, etc.  I'm taking a high blood pressure medication called Benicar Olmesartan which helps with reducing inflammation. I take a very low dose as a preventative measure.

I think your check-up plan is a good one!  Do a remote and see what it says.  If you need to go in for any reason, remember that you are the boss and can tell them "if it ain't broke, don't fix it!"  :-)

Good luck!

Annal checkup

by ROBO Pop - 2018-01-17 12:12:51

If you're going to treat yourself, why bother sending a transmission? 

If I may suggest...make sure you have lots of insurance so if your self prescribed treatment regimen doesn't work out you can sue for malpractice.

Treatment

by DMJ - 2018-01-17 13:54:46

I don't know if you have any knowledge ROBO Pop on Cardiac Sarcoidosis.  I have reached the end of treatment, I have a pacemakerICD, take medications for my congestive heart failure and see a specialist twice a year with a Pet scan.  I'm not treating myself, I'm making informed decisions.  My not wanting to see the nurse for pacemaker adjustment is from bad past experiences.  I would hope all people facing life threatening illness would make their own choices and not be forced to comply by doctors and health insurance to treatments they do not want. Sometimes the treatment is worse than the illness.  Some drugs given can lead to diabetes 2, breast cancer, loss of vision, bone loss and depression.  I won't be someone who lives in misery from a treatment to give me a few more years.  

Got to disagree with Robo Pop

by Gotrhythm - 2018-01-17 17:06:37

It's your heart and your life. I see no problem with explaining that you like the results you're getting, and expressing your desire for no changes at this time. Needless to say, the time to express your preferences is before they change anything.

Most tweaks to your device settings are not life-and-death issues. If they give you push back about needing changes to extend battery life, well, battery life is important, but it's not everything. Quality of life trumps battery life every time, IMO. And only you can say what quality of life is for you. The current settings work well for you. You don't want them changed. It seems very simple and straightforward to me.

I must disgree with Robo Pop. Sending a transmission or taking any test does not obligate us to accept any recommendations which might come as a result. I believe it is our responsibility as patients to listen carefully to advice given by medical professionals, ask questions until we understand what is proposed and what the outcomes are likely to be, and then make our own decisions about whether what is proposed is in line with what matters most to us. Refusing to follow medical advice is not at all the same thing as refusing to seek it. 

Most medical people are giving the best advice they know, but it's important to remember that whether they are right or wrong, the person who will have to live with the consequences, good or bad, of any treatment is us. Therefore, we have not only the right but the obligation to speak up about what we want and don't want.

Checks

by DMJ - 2018-01-18 14:57:51

I do get my follows up and have a new appt for office visit.  I would like to know if anyone has a  form to complete for our ICD and pacemaker to be turned off with a DNR.  Of course this does not kill us like people think, we all have some self pacing.  I would like that for my files. I agree with you, not afraid of dying yet don't want to be a left with a stroke. People in the ER really don't understand  CRT-D or how to handle them. My current pacemaker is just replaced in Dec. of 2016, so it has plenty of life in it.