Dear Gemita, thank you so much for your message. I was feeling pretty low and having someone to talk to helps. I knew right away something was wrong. I kept getting a stabbing pain in my heart. I then developed very small lumps that kept growing and are painful. I get very itchy and then fluid started to build up where it got hard to swallow. I was in the hospital on strong doses of prednisone (I've had to take prednisone again since) it helps somewhat. Fluid is building up even on my back behind my left shoulder right down to my left foot and around my heart. In the beginning they kept trying to tweak my PM settings. It was a few months before they sent me for allergy tests. It also took a couple of months before they were done. They have been trying to find a solution for me. I'm very upset with Health Canada for not helping me. Time is running out for me now that the vein that the leads are in has collapsed. I have a wonderful cardiologist and he has a great caring team behind him. I am a very rare case and haven't been able to find out any information about my type of allergies on the internet. If I was rich I could go to the USA for surgery. When I got my PM my heart beat would drop as low as 25 and go up well over 200 and it stopped 960 times in 8 days. I'm very dependent on my PM. I again thank you for talking to me. I'm very grateful for this site. 



by Gemita - 2020-02-29 08:08:08

Hello Domkin,

Thank you for your message and it is a pleasure to be in touch with you.  I just wish there was something I could do to make a difference.  It is reassuring to know that you have a wonderful cardiologist and a good team, that will ensure that you remain safe while they try to fix the problem.  Without such a caring team, you might well be in more trouble, so I suppose things could be worse.

It is interesting to read the difficulties you had in getting a diagnosis of allergies and to note that many of your symptoms could indeed be a complication of implant surgery too.  Both hubby and I have pacemakers (we both had implants same year in 2018).  My procedure went without complications but poor hubby had a bleed and they had to drain blood from his lungs when he developed pleural effusion.  He was very poorly for months and also had "pleuritic chest pain" (a stabbing pain in chest).  Very very difficult to manage.  It is beginning only now to get better but we had to go to see a pain consultant for a nerve block. 

Take good care of yourself and keep asking your cardiologist lots of questions to see whether he can help get you that pouch from California.  That does seem to be the best way forward so far.  Doctors are often able to break through the system and get results, so dont ever give up.  I would push the fact that the longer they wait to remove the offending materials from your body, the longer and potentially more complicated recovery is likely to be.


You know you're wired when...

Friends call you the bionic woman.

Member Quotes

It made a HUGE difference in my life. Once I got it, I was finally able to run, and ride my bike long distances.