Joined too soon

Keep posting

by Domkin - 2019-12-31 05:03:35

Please update us on your health status. Best wishes, best of luck, stay strong.

yes do keep us informed of your progress

by Gemita - 2019-12-31 07:25:50

Dear Johnny,

Firstly I am sorry the answers to your ‘penultimate’ post proved unhelpful and you had to resort to Google in search of a possible outcome if indeed Sarcoidosis is still “active” in your body.  As you have had Sarcoidosis in the past, a flare up of Sarcoidosis is a real possibility but we need to wait for test results, as you say, before we can really try to discuss a likely outcome.  Have you searched this site to see whether there have been any posts on “Sarcoidosis” ??  By the way Sarcoidosis is in my family too (on Mother’s side).  It can be a debilitating disease, thought to be immune related in Mother’s case.  However she reached 85, bless her.

I really understand your fears, your need to know “why” and how best to treat your illness in the future.  I have experienced metastatic malignant disease and I can assure you I was searching for answers and reassurance “everywhere”.  Unfortunately reassurance was not easy to come by with my prognosis.  I did eventually win the battle although “a permanent cure” for any disease, particularly cancer, can never be guaranteed.

Whatever the cause for a disease, we need initially to treat the symptoms to provide stability and this is exactly what your doctors have done for you.  They have seen a problem and have given you effective treatment (a PM).  This may be all that is needed to give you a full, long, happy life.  Perhaps in the future if further intervention is required, a PM upgrade may be considered, but for the moment you seem to be doing so well on your present treatment, including what you are doing for yourself.  None of us can stop the ageing process Johnny, can we, or potential progress of an illness but we can live a good quality of life along the way and that is exactly what we are all trying to do.

When I was struggling to come to terms with my malignancy, the hospital treating my disease did offer “psychological support”.  I declined at first, but agreed later and it did help me to discuss my fears and get some real answers from my treating doctors.  Would this be available to you at your treating hospital, especially if Sarcoidosis is confirmed?  I sense you need support, need answers from those treating you who know you best.  Perhaps you could enquire whether there is a Sarcoidosis support group in your hospital or in another hospital ?  

Whatever the outcome of your future tests, continue to live a healthy life and try to be happy.  Your body will always take good care of you and will never let you down if you give it what it most needs:  adequate rest, sound nutrition (including good hydration), gentle physical and mental exercise and being with those who really care.

We all have our own “unique” role to play here on this site and some of us will need more support than others at certain times on our journey with electrical heart issues. 

Thank you

by Johnny63 - 2019-12-31 12:03:09

Thanks to both of you for your comments. I ignored thinking about my situation for 3 weeks after the PM was installed and then after Christmas felt like I needed to get a handle on things, so I really went for it, lol. This is my personality. 

  I have very good doctors, great friends/family and a really positive attitude. I am going to have another Cardiac MRI soon and then a stress test afterwards. 

  To everyone I have communicated with on the site and everyone else I may have the chance to communicate with, I wish you a Happy and "healthy" New Year! 👍