new member constrictive pericarditis, delay in diagnosis

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heartbeat
New Member


Date Joined Jul 2010
Total Posts : 4
   Posted 7/12/2010 12:00 AM (GMT -7)   
Hello from Melbourne, Australia.

Its wonderful to find this forum where we can support and learn from each others experiences!!
Im an "old" heart patient having been through multiple heart surgeries and ablations plus pacemakers to boot in my 30 odd years of life My friends refer to me as being "battery operated"

In the last two years I have experienced increased fatigue, swollen ankles, weight gain around my waist and breathlessness upon walking up stairs, inclines or during exercise. Was written off as being unfit, being stressed, or episodes of ventricular tachycardia which I have had since I was a kid. After months of echo's coming back showing pulmonary hypertension, I was referred to a brilliant lung specialist who arranged for every lung test under the sun which when they came back normal he then pointed to the heart as a cause. A new cardiologist along with my old professor arranged for a Right heart Cath to be done. This showed high pressures and was confirmed with a fluid challenge test, of 300mls of saline infused. Have been told results showed heart is either quite restricted (restrictive cardiomyopathy) or more likely constricted (constrictive pericarditis).

It seems my open heart surgery several years ago followed by bouts of pericarditis, may have come back to haunt me and the Docs. I am now on high doses of lasix, flecainide to control heart rate, however nothing is really helping, my feet and ankles are 'cankles' and my mum can run up stairs while I huff and puff. I have worked as a paediatric nurse, but find such active work is impossible at present and I miss it dearly. My cardiologist is discussing my case with others in her field as its so "rare" and is arranging a more detailed echo and possible Left heart cath to gather more information, but I know there are limited options and I could be heading for another open heart surgery for a pericardectomy. A thought that is a little daunting......

I have found I have had to fight for my symptoms to be taken seriously, the latest cardiologist admitted to me that because this condition is so "rare" they don't think to look for it, and don't think of heart failure for a diagnosis in young people!! They were actually shocked in the cath lab when they read the pressures and kept telling me some what disbelievingly how rare CP is, (so not what you want to hear while still on the table!!) It was only my symptoms getting worse and me persisting over the last 18mths that I now have some answers. I have been dealing with heart issues for half my life, since age fifteen and while my family and friends have been wonderful, you can feel very alone at times, despite getting on with life and putting on a smile. A forum like this is fantastic and im happy to share my experience with people who are all so brave and truly understand the highs and lows of the cardiac journey.

Have other people had similar experiences with getting a diagnosis? Or are there any other tests I should be discussing with my cardiologist to aid in diagnosis of Constrictive Pericarditis?
Thank you for any advice and please feel free to ask any questions about my experiences. Hope I have not made my story too long or boring!! Sorry If I have. Will do better next time.

seeing new heart specialist this week, hopefully have some more answers.

Thanks again and cheers and hugs to all who need it. smile

Post Edited (heartbeat) : 7/12/2010 9:13:13 AM (GMT-6)


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 7/12/2010 8:05 AM (GMT -7)   
Hello and welcome to HealingWell. I am so sorry to read of your heart problems. I hope you continue to advocate for yourself as you obviously have a major issue going on.



Wondering if you have had a Computerized tomography (CT Scan) or a Magnetic resonance imaging (MRI) ?



I am sure you will hear from other members but please do keep us up to date on how you are as we care.



Kindly,



Kitt

heartbeat
New Member


Date Joined Jul 2010
Total Posts : 4
   Posted 7/12/2010 10:59 PM (GMT -7)   
Hi Kitt,
Thank you very much for the welcome and your reply. I have been told that due to the pacemaker, they are unable to do a MRI, but I will ask about a CT scan. Have had one in the past to look at the lungs but not the heart

Thank you for the suggestion and support. Will keep updating my progress.

Have a great day!!
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