Update now that I can type!

Venting allowed, clearly I vent on here all the time!

by asully - 2021-05-23 21:59:37

The government here is the US has made doctors so afraid of being sued, facing criminal charges, or losing their liscence a now due to the opioid epidemic being blamed on overprescribing that they overcorrected.  The doctors won't actually say that's why they aren't giving out pain meds but in reality that's usually why.  I have also struggled many times in the last five year with under medication post procedure (especially when they discharge you).  There is a safe way to still get patients the meds they need and wean them down slowly at the end to avoid withdrawls which is usually what triggers someone to go from taking pain meds as prescribed to getting them illegally.  There should be more focused continuing education on how to properly taper a patient off opioids.  It is very easy to do.  I learned all about it when I got my Masters in Addiction Studies.  I used the taper technique I learned in school after 6-7 weeks in morphine and was able to discontinue them with no withdrawl symptoms.  If you don't taper and the patient has been on opioids for more than two weeks it is almost guaranteed they will expierience some physical withdrawls.  For a person recovering from any procedure stressing the body with withdrawls is the last thing you want to do.  And in fact their have been case studies where patients with weak hearts who were cut off from opioids without a taper developed acute stress-induced (broken-heart or takosobus cardiomyopathy (I prob spelled the last one wrong).  Essentially the opioid withdrawls trigger a release a catecholmines which can in turn exacerbate or even cause entirely on their own acute cardiomyopathy.  Anyways the way to effectively taper is to first extend time between doses then reduce the dose rinse repeat.  If done nice a gradually even patients who have been on high doses of opioids for months or years can reduce or come off the medication with little to no discomfort.

In college we we also read papers and were lectured on how recovering addicts being treated for pain need to be fully medicated (not given less) to reduce the chances of them going out and finding their own pain relief.  A frequent cause of relapses in recovered addicts insufficient pain management following operations or injuries.

Anyways now I am the one ranting, you just touched on a topic that is in my field of expertise and that I am passionate about.

The saying " once an addict always an addict" is just simply not true.  Many people recover! And once whatever imbalance in their life or thinking that led to substance abuse has been addressed the desire or cravings to get high disapear.  Just like any bad habit, you find out what thing is out of place that the bad habit provides releif from and address it while also teaching healthy coping mechanisms.  Once someone knows healthy coping strategies the need to use a habit that is harmful no longer provides additional benefit! Ok ok I'm stopping now y'all! I've been cooped up in this hospital bed for far too many days now lmao, I'll go rant on my blog instead muahahahaha. Thanks everyone for the kind words and support, reading all the messages in response to my situation post op made me go from feeling alone just stuck at the mercy of my situation to feeling like I had an army at my back!  I apologize if my messages have seemed spacey or hard to understand, I have not slept more than 2 hours straight since I have arrived and my mind is off its game.

what hospital

by new to pace.... - 2021-05-24 03:37:45

wondering what hospital you are in so none of us have to go through what you are going through.

new to pace

Never lose sight of what you want to achieve, even though it will be a bumpy ride sometimes

by Gemita - 2021-05-24 08:00:22

Hello ASully,  thank you for the update, a catalogue of rather disturbing details and upset and I can only hope that things will improve and that you and your fiancé are back on good speaking terms.  Sometimes it is helpful to release our anger.  Better than keeping it bottled up as I well know from my experience this morning!

I hope they can relieve your new symptoms of muscle/nerve irritation mentioned in your earlier post with perhaps some electrical reprogramming or medication to help settle it down, although it sounds as though you have had more than enough meds/anaesthesia than you can cope with which may well be contributing to your muscle spasms?  At least your pain seems to be under control even if it has wiped you out and possibly caused other symptoms.

Thank you for the provisional explanation of what happened during your ICD-D procedure on Friday.  Perhaps you will hear the full version from your trusted team tomorrow when they are back on duty and you can get some real answers and apologies for all the distress caused.

I wonder if the PICC line was already becoming a problem at the start of your procedure and then with intervention it became more apparent?  It can happen and perhaps this has been a blessing it was found while you were in hospital so that adequate Milrinone can be administered.  Hopefully Interventional Radiology will successfully place in your subclavian vein tomorrow.

I hope you can get all your meds sorted tomorrow and you can leave hospital soon with a temporary fix to hold you “together” until you are able to receive a heart transplant.  No one is prejudging you.  You are down on sleep and physically hurting and possibly making strong assumptions that may not be completely valid.  I know high doses of pain meds and lack of sleep can result in lots of unwelcome thoughts.  And you are certainly not alone.  We may not be at your side but we are always here if you need to talk.  

I saw your pics in the Gallery.  I must say the first pic of your lovely face and hair told me all I needed to know about you.  You look quite amazing for all your difficulties.  I won’t comment on the body pics.  We need the before, during and well after to make a sensible comment!   But I am a little confused (quite usual I know) and perhaps you can help me out.  You say the abdominal area looks a bit more swollen “than it did when they swapped in the CRT-P in November.  I thought since the pocket was empty it would start to shrink not get bigger . . . “  I thought they weren’t opening the abdominal area and taking out the old CRT-P but leaving it in because of the risk of an infection and then placing a new CRT-D in your sub pectoral left shoulder area, but perhaps I got that wrong?  If they did take it out, then swelling could still occur I would think but hopefully should settle quickly as you heal. 

I send my best wishes and hope that you will be home soon,

Gemita xx 

Sending healing thoughts

by Julros - 2021-05-24 14:39:15

That sucks that you have had to go through all this, but yes, continue to speak up. I can attest to the frustrations of "health care" in the US. Hopefully, you now have your milrinone infusing, your kidneys are diuresing, and you are getting some pain relief. 

I dread if I ever need a PICC or central line, knowing that my right subclavian vein is scarred up around my wires. I worry that some hotshot ER doc is going to try to thread past them and screw everything up. 

We are all pulling for you! 

Thank you for sharing the pics!

healing thoughts

by Tulp - 2021-05-24 22:22:23

Healing thoughts from me aswell.

I feel very powerless to cheer you up, but I just want you to know that I hope you will feel better soon, and that your usual Doctors will be there soon for you.

So important to feel safe.

Your pics are impressives. (Btw Nice tatoos)