Update now that I can type!

Meds got sorted yesterday.  At midnight Friday after I had what little pain meds they could give me in my system I sent an email off to my "contact". Honestly I was hurting so much I don't remember what I said but I know I just asked for him to check in with me ASAP and that I had a little trouble following a procedure at the cath lab.  I didn't give any deets about the medicine thing etc to him, figured better to explain in person.  However I did complain to all the night nurses and word must have reached someone because around 10 am yesterday a guy who claimed he was a cardiologist working with the EP team through the weekend came to talk to me about getting me better pain control.  I had not made any direct requests to talk to someone about the pain control just had vented about not receiving post op/recovery pain meds or treatment.  I think I must have been clearly in pain two my two nurses all night who could only give me a small amount of meds of an old order might have pulled some strings.  Anyways the guy was apologetic and nice and said his first control was to get my pain back under control, he asked what we did for my last surgery and I told him, also mentioning it was in the EMR if he wanted to confirm, not only were those orders placed in 20 mins but my nurse came in five min later with a "extra big dose" of something stronger that the doctor ordered as a "head start". An hour later when they went to pull the PICC line my nurse called to see if she could start administering the other meds or if it was too soon and he said go ahead and give her a big IV dose of the extra strong stuff.  So I spent must of yesterday pretty loopy, the extra strong stuff isn't really stronger for me but it makes me very dopey.  So I didn't even start my morphine regimine till around 6pm because I didn't want to be so out of it.  Anyways, I think my point in telling the story is that I believe this was somebody trying to "make up" for what had happened.  I talked to the two other doctors from the EP team who were part of the decision on the surgery but had not stayed through the procedure they were going to find out who the particular staff member was and find out why I wasn't given post op care.  They all at least pretended to agree with me that it shouldn't have happened.

It turns out the PICC line somehow got twisted into a knot inside my vein during the procedure.  They said it was likely due to my "small frame and and small anatomy". That there was not enough room to run the pacer wire and the PICC down the same vein.  But it never was explained how the knot happend.  Because of the knot being in there for 12 hours I wasn't getting as much of my milrinone drip as I should have and I started getting blue fingers and toes again.  They have still been blue off and on today but getting better now that they made a new midline until I can get into interventional radiology to have a subclavian PICC placed.  One other note about the knot, they also said it is highly likely the extreme post op pain I suffered from may have been enhanced by that knot filling out the vein and pushing against nerves, it was quite painful when they pulled it out and did feel better once it was gone.

I have gained 10 lbs of water weight all in my lower extremities since they stopped my furosemide last Tuesday.  I convinced the weekend staff to give me an IV dose of lasix which I thought was helping but my weight this am showed I actually gained not lost.  I complained some more to the docs covering for the HF team through the weekend, they tried to tell me again they can't get the fluids of because my internal pressures had been too low, then he used his manic want to use the jugular vein to estimate my pressure and changed his mind because apparently it was now slightly high, he put me on a half dose of my oral furosemide, I have barely peed at all an it wore off hours ago.  
I am praying my actual doctors are back around tomorrow and not the weekenders who don't know me or my case, it made for a very stressful weekend!  Even the weekend case manager was messing things up.  Everyone seems confused and nobody knows all the details of my case.  They also do not know me and I am getting prejudged bu some of them I believe which isn't helping.

Hopefully tomorrow will be better, and maybe big dog will get my email and help straighten out some issues.  Right now I just feel physically and emotionally abused, and very alone.

The fiancé was in bad spirits yesterday, he brought me my laptop got mad and left.  I barely talked to him today.

I did however have a fun night with a nurse I had the first night back from surgery as well.  He had a slow night and so he just hung out with me since I couldn't sleep.  We had a good time and the night passed quickly.

I do have a good team of doctors here, this is pretty normal stuff for any commercial hospital in the US.  The doctors can be great but policies, paperwork, human errors by low level staff, and understaffing on weekends ALWAYS causes problems (one of the reasons I wanted home before the weekend).

It is also unfortunate that in the states as soon as you sign a consent for treatment you are also agreeing to pay whatever they charge.  Luckily insurance covers a large portion of this but we pay for our insurance, so mistakes cost our insurance money which raises every bodies premiums, it is a real bummer.

I am rambling again, I posted some post op pics the abdominal one looks awful it's swollen bigger 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.  My left shoulder and boob are HUGE I am so small and a crt-D can so big, now I just have to pray I get approved for listing then get a heart so it can come out! I am a bit upset at the quality on the incisions (it looks as if a two year old did them).  If I get my new heart I may have to get some plastic surgery to have things cleaned up :(

5 Comments

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)

 

 

 

 

 

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