Ejection fraction still low...
Posted 16 July 2011 - 02:45 PM
Beware of reading any further as I am going to complain and get right outta my pram so watch out for my rattle!
As you know I had an ECHO weeks ago now and finally got some results in the form of a telephone call from the specialist nurse saying right side heart pressure is up, I then received a letter from rheumatology that was supposed to give me more results. Do you know what it said? Ejection fraction now at 35-40% and that was it...no mention of the right side of the heart at all! Nothing, nada, not even a single line! Did the right side of my heart just disappear?
Well I have to admit to being disappointed about the ejection fraction still being so low as normal is 55-60%, last year it was 32% so that means that it's only gone up between 3% and 8% after implantation of the pacemaker/defibrillator. Here's a thought, maybe is was higher after implantation and has gone down since then? As there was no ECHO after implantation I'll never know! Maybe that's why my shortness of breath (SOB) has returned although it is only upon exertion at present and when I was in significant heart failure it was constant. Oh well I guess even 3% is an increase.
Here's the thing making me get outta my pram, it's the lack of results and information coming my way. How could the results only refer to half of the heart particularly bearing in mind that a)the right heart pressure was up last year, b)the nurse told me it was still up this year and c)I said I was most interested in knowing about the right side of the heart?
Oh yes and I got up today at 5:00 p.m....what's with that! I am so tired again that I am getting up at ridiculous times! Mind you today I did mix up the timings on my pain meds and took a dose way to early...might have been a contributing factor today but what's with the rest of the endless days I am asleep or too tired to do anything significant? Life? What life, I blinked and missed it!
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 16 July 2011 - 03:50 PM
I'm sorry; it's very disappointing when you're expecting the results of your ejection fraction to be much improved and it doesn't show a lot even after the fitting of the defibrillator and also when you're on tenderhooks to see whether you're suffering with Pulmonary Hypertension and can't seem to get any satisfactory answers.
I agree; I think I would be inclined to write or possibly phone the rheumatologist or his secretary to see if you can get the information you're wanting about the right side of your heart. Just a thought; I'm not sure how helpful your general practitioner is, but mine has contacted The Brompton for me on a couple of occasions when I've had a query on my medication and also when I developed shingles; sometimes she can get information from them when perhaps I couldn't, although The Brompton are pretty good about letting me know what's happening (they're sometimes not quite so good at liaising with the other hospitals though!!)
Today the weather's been dreadful so if you've had the same as us , you haven't missed much by not stirring before 5pm!!
ISN Assistant Webmaster
SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)
Posted 16 July 2011 - 10:06 PM
So sorry you are too tired to enjoy yourself at all. I think I know how you feel, then I realise I got up at 10am this morning, way before you. But I have been dribbling around the house all day since then, haven't achieved anything!! I might have just as well have stayed in bed!!!! We have had a perfect mid winter's day so it was worth getting up for.
As far as results of tests go, I always ask for the results to be sent to me too, and I usually (I won't say always) get the same letter that my general practitioner gets. That said, I don't usually get treated at a hospital and I guess when one is paying over the counter you can expect a better response.
I do hope you eventually get a clearer answer.
Warm hugs from JudyT
Posted 17 July 2011 - 11:43 PM
Do you ever wish you could have your own specialist rheumatologist just for you and nobody else?
Someone who could spend time tangling with not just the big stuff but the irritating little issues too.
I often do feel that even though we are getting the absolutely best care it would be so wonderful if they just had more time.
Sometimes my head spins with the complication of trying to work out for myself, with the help of you guys and the Internet-just what to focus on and ask for help with.
What happens to the people who are unable to take an active part in their treatment?
I dread to think.