Please bare with the long back story but I could do with some advice and support.

• by Bronny
• 2017-06-20 04:23:14
• Surgery & Recovery
• 1332 views
• 2 comments

I was 16 when I got my first PM. I didn't really have anything explained to me about it but I could recite My "Condition". Doctors looked confused but paramedicts knew what I was talking about. Congenital Abnormality of the AV Node resulting in complete heart block stage 3. I am now 40 and my PM has recently celibrated its 24th birthday. I always knew it would need changing but it was just this thing that was was it was. I had no concerns and no thoughts about it. I went to my appointments. I was eventually told that the battery would make it too the 21 year mark but would probably need changing soon after. I moved interstate 4 years ago to Newcastle in NSW, where I had lived 15 years before for around 4 years. I made an appointment with my new doctor and organised a referal for my check ups since I was already on 3 monthly diagnostics. I then spent the next 4 years getting referal after referal after referal and still no appointment. My doctor was confused and was getting as annoyed as I was. I had even called the hospitals and was told that I would have to wait for my referal. I turned up at the clinic when it was open and requested to be seen. They couldnt do it.  

Here is what was taking so long. They didnt know who made it so didnt know which technitian to send me too. It took 4 years and eventually I was helped by a woman at the clinic reception who sepnt litterally hours trying to get the information from the hospital that did the implant and the hospitals I subsequently visited for check ups. My card (with those very important details) was in my purse when I was 18 and my handbag was stolen. For 10 years I requested a replacement at every visit, always told it would be posted. I never arrived. I stopped asking. Obviously it was redundent and airport security could see the big red scar on my chest that I showed everythime I needed to. I used to be a very fit kid with a heart condition so I became complacent. Now all of my 5"0' weights a stupid 25 kgs more than it should (20 of wich have been in the last 2 years). 5 children have kept me on my toes and very very busy and tired all the time. My 10 year old has Asperges and although often tired, I very rarely get sick. So when I finally got sick the morning before my first appontment in 4 years! He had a panic attack. (He thought I was going to die because I lost my voice. It also took me 3 years to convince him that I wasnt Iron Man.... Very cute!) The tecnichians at the PM clinic also paniced a bit when they realised not only that they couldnt read my PM (apparently, it was not the one made by the company of the Tecs there that morning) but the PM I do have, is no longer manufatured, they can't work out who now takes care of the brand and they can't find the progame to read it.............

They are assuming that it is dead or that there is a problem with the leads given the symptoms I have experianced particullarly in the last two years ( they are almost identical too the ones that got me the PM in the first place). Some I haven't had and some new u-beaut ones. I am a bit concerned about what it now going to happen but that 3 weeks later, I still havent got a new cardiologist appointment to let me know that is happen or when ..... What and how to explain things to my children so they understand (even my 21 year old who's help I am going to need) both with the surgery as well as recovery. Oh and just for fun, we have to move in the next 2-3 weeks. I am not sure if the stress is going to kill me or it is keeping me alive but wow..... I have not had any issues up until a couple of years ago and I am looking forward to getting back to feeling "normal". Has anyone known anyone, heard of or experianced having the same PM for such a long period, flat batteries, children with low coping skills when it comes to illness ect ect ect. I realise it is a long storry but the list of questions is much longer. I actuall dont know anyone else with a pacemaker. My grandmother had one but she passed away 2 years ago. 

Thank you.