So it's been a long time since I posted a topic, let alone an update but having had a full and eventful day at the Royal Free this week, I've a few questions...
To recap, diagnosed 2007 diffuse systemic sclerosis, serious heart failure from myocardial fibrosis early 2010, bi ventricular ICD implanted late 2010, chronic leg ulcers from 2011ish, completely wheelchair dependant 2012 having used one from 2007. Main problems are now crippling pain and fatigue.
This week's appointment and my LFT was normal, ICD functioning well, ECHO was puzzling because the tech suggested it was all good but the rheumatologist wasn't sure. During the ECHO the tech checked my JVP (I think that's why she put the doppler on my neck) and when I asked if the pressures in the heart itself were normal, she said yes. The rheumatologist wasn't sure as the reading was 27-42 and whether that wide of a reading was an error so I'm being referred back to cardiology.
Now, I went a'googling, as you do, and see that some sites say 25 and above is pulmonary hypertension territory so here's my question(s):
-are readings above 25 considered to be PH
-can you have such a wide reading as above
-can you have a normal LFT and PH
-can you have a bi ventricular ICD and develop PH (anyone knows that and I'll happy dance for ya!)
Having survived myocardial fibrosis, an out of the blue hit with a wet fish diagnostic experience, that at the time reduced my life expectancy to 2 years, I can't help but wonder if PH is going to be the other shoe, landing squarely on my head, stiletto heel positioned downwards.
With this disease, you just never know when the floor is going to drop out again. In 2010 my life expectancy reduced to two years without successful treatment ( 30% of people never get any benefit from pacemakers) and I had gotten used to thinking I was way passed all of that and now I know that I let myself enjoy a false sense of security. The numbers from my ECHO may be nothing and nothing mat have changed and then again I could have PH although I know that right heart catheterisation is required to officially diagnose it.
I'm also being referred to gastroenterology, the rheumatologist thinks, based on symptoms, the valve between esophagus and stomach is faulty. My gastro symptoms used to come and go, about 2 months ago they came and never left, leaving me difficulty swallowing, reflux, constantly feeling something is stuck and bringing back up recently eaten food whilst still eating. Bad table manners, bad, bad table manners!
I'm also off to physiotherapy to see if I can be enabled to stand and even walk, pain allowing (post pending about pain management procedure). Finally, I'm giving hydroxychloroquine another try but a lower dose this time, gotta get on top of this fatigue! Anyone find it causes headaches and do they go?