Mended Hearts Open Forum

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  • 1.  New member

    Posted 08-22-2022 12:18

    To members and care providing     

     Being Mrs sole primary care-provider with achieving daily multiple activities for over ten years as she has Primary Progressive MS, PPMS, with severe damage to the frontal lobe causing cognitive issues has/is not easy and a daily challenge and takes effort and currently is being diminished daily as I have to now take care of my health " Your mask on first …" which is contrary to how I was.  Yes, currently I'm unable to achieve as I did prior and it's not easy to dislocate from my care provider activities.   

    With no network and knowing our current circumstances independently we are slowly getting on with the 'on-the-job training' OJT working through what we are able to achieve and letting go of others.

     Mrs with her MS brain has her own cognitive issues/depression to deal with.  

                Currently we are not each others greatest supporters. This will pass! 

    Background I'm 72:  I'd had a mitral valve prolapse with no symptoms for over 40 years. In 2020 I had both hips replaced due arthritis and believe this led to the DVT and saddle pulmonary embolism PE, which medicals won't admit too, which let to open heart 3/23/2022.  Both valves replaced, aorta repaired, by-pass, stabilized through shocking, pacemaker; ten days inpatient. Outpatient, 14 days with a Foley catheter and the left lung drained which was very unpleasant. Completed cardio rehab with good results. So physically doing well.  

    Recently, after three months post-surgery through myself awareness and recognizing cognitive disfunction after the open heart surgery and my in-depth research I recognize I'm not myself cognitively. Similar as expressed by others, my thoughts being very negative, why did I have surgery, what was the point, why am I here, no future?  I have lost interest in things, forgetting words and spelling, slight short term memory loss, don't want to be around people, have little tolerance, get impatient quickly ….

          The post-surgery mental-ness is known by cardiologists who at pre-consultation fail to mention. 

     My Brain is recuperating [thawing = the process of becoming friendlier or more cordial]

    // Being aware and attempting to regain positivity+// Warm Regards Derek


    127 Chapter TN, Derek

  • 2.  RE: New member

    Posted 08-24-2022 09:22

    Pacemaker tune - up 
    Went to Nashville for the pacemaker eval and tune-up today.

     Technology check-up took 20 minutes. My travel, return trip 160 miles.

     The technology is amazing, everything is done via an IPAD-Wi fi.

    I was seen by the number one expert who did a lot of talking and keying the IPAD.

    I felt nothing. As I was told it wasn't about me, it was precautionary and only about the pacemaker.  

          FROM TWO WEEKS AGO's EVAL -- the heart, from the pacemaker, has two wires attached, one upper chamber, one lower.  The lower wire with two electrodes [bipolar] was reading off the higher [also bipolar] called cross talking and reporting back to the pacemaker which in turn sends out, via Wifi satellite the measurements, graphs …whatever, to a main frame.  And today's visit was to see what was happening and fix as necessary. 

     I don't recall and have no idea what the measurements or ranges are.  The lower had been set at 0.6 during the initial implant in April. Today the lower wire was changed to unipolar [one] and tuned to 1.2 somethings. Upper not changed. 

     Eventually, I will receive a mobile wifi box which is connected to house electric socket. Box will send out data to a mainframe. Due to supply chain issues the Box has been on backorder since April. When I get a box the office visits will not be required till then my next tech eval Dec. BTW Tech company does bill med ins only for mobile readings.
    It is absolutely amazing how all of this works! As long as the techno staff are on the job is what counts.
    // Being aware and attempting to regain positivity+// Regards 

    Derek (Chapter 127 TN)

  • 3.  RE: New member

    Posted 08-29-2022 08:46
    Going through something somewhat similar, I have stage 3 chronic congestive heart failure and my husband has dementia.  He also just had surgery, so caretaking for him has been my main job for the last four years until I was so ill I ended up in the hospital for five weeks and they were like hey you have stage 3 congestive heart failure! Now that that's been discovered and treated, physically I am much better, but between keeping myself healthy, taking care of him, taking care of the house, and dealing with dementia related mood swing and inability to concentrate or idk all of it. Yeah.  Tired.  Feel for you xx

    Cait E

    Los Angeles CA

    Caitlyn Ellery

  • 4.  RE: New member

    Posted 09-01-2022 10:15
    Dear Caitlyn
    Well i just read your other letter regarding your husband
    and your recent hospitaliza Please reach out to others to get physical help your daily life. Asking for help is not a sign of weakness: it is a gift/honor you give to others, letting them in . Your church group, friends, family, social worker and state agencies should be available.

    Marilyn B. Rosenhouse
    Mobile: (214)850-0655

  • 5.  RE: New member

    Posted 08-29-2022 08:46
    I tried to reply to this but my reply isn't showing up.  I'm not sure if threads are monitored and have to be approved? Please let me know if you see this Derek.

    Caitlyn Ellery

  • 6.  RE: New member

    Posted 09-05-2022 14:00
    somewhat disappointed as only one reply to my initial message. Thanks Caitlyn.
     All I can assume is the majority of the members do not have primary care responsibilities. Therefore, unable to offer solid information on how to deal with such.  Reading in other discussion groups the same shallow rhetoric "seek help, talk to doctor, church, family, friends, local support group, local government agencies, ..." of which I've done unsuccessfully.  All, either shy away, distance themselves, continue the relationship as unpleasant and toxic, perhaps briefly [emails/texts] only wanting to discuss the physical and never the cognitive aspect of our heart situation.  This may appear a negative message, it's not, as I'm sure others are/have experienced the same.

    Warm Regards
    Derek [in TN]

  • 7.  RE: New member

    Posted 09-07-2022 23:00
    per my past message 9/2/22. I need to correct "... as only one reply to my initial message. Thanks Caitlyn." 
    My Thanks goes to Marilyn Rosenhouse TX for her replies to my original message 16 days ago.   Apologies 

    My Brain is recuperating [thawing = the process of becoming friendlier or more cordial]
    // Being aware and attempting to regain positivity+// Warm Regards Derek

  • 8.  RE: New member

    Posted 10-04-2022 09:17
    I am going to start going to new drs as mine do not hear what I say and wouldn’t even answer a question before my second ablation (2 ablations in 2 days). It is a year and a half since I had the 2 ablations. I feel overall worse than prior to the ablations. I get the feeling that they truly do not care how we, their patients feel! I am suffering even as I write this note to you! One of my drs tried to speak with my cardiologist (I recommended he not call) and the cardiologist would not listen to him! It has been tragic what has happened to so many cardiac patients! I feel for you 100 percent! Lynne everson

    Sent from my iPhone iPhone