Posted 08 December 2009 - 11:00 PM
I too have recently been told I have mild pulmonary hypertension and level 1 heart block. Of course I really freaked at first and had myself invalided out in no time flat. However, I have come down to earth again after several weeks of contemplation, reading and talking to my general practitioner. We live in New Zealand - NO IT IS NOT PART OF AUSTRALIA, WE ARE FOUR HOURS AWAY BY AIR -and with such a small population (4 million) we sclero sufferers are very rare birds and it is hard to find anybody who has very much experience in the different problems we have. However, I had an exercise ECG today, and am thinking that the next thing I will ask for is right heart catheterisation.
My general practitioner says that since the PH is mild the likelihood of successful drug therapy is high - I hope so. If anybody out there lives in NZ (we are in Auckland)and has PH I would love to hear from you about what specialists you have found. The first time I went to a cardiologist I had to tell him about PH and he went off and did some reading!
I am no spring chicken, I have had recognisable Sclero since I was 22 and now I am 66 almost so I guess I could be doing worse than I am at this age. It is good reading your experiences.
Does anybody know what the contraction PRVST stands for??
Posted 09 December 2009 - 03:07 PM
Paroxysmal Supraventricular Tachycardia - a periodic rapid heartbeat.
I lived in Rhode Island for a while and people used to ask me how I could bear to leave Hawaii. (Both in the USA, but miles apart in distance and climate!)
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Posted 09 December 2009 - 05:42 PM
Shame I only did one year as a Phlebotomy technician when I was 19 - decided that the training took too long and I had things to do and places to go and people to see and couldn't wait 5 years until I was qualified - I would have been much more informed by now if I had stuck to Lab training for longer.
Posted 10 December 2009 - 01:58 AM
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Posted 15 December 2009 - 01:39 PM
Welcome! I'm really sorry to hear about your health issues. It can be so discouraging.
I've been to New Zealand twice in the past year and will be going again shortly. I fly into Auckland then catch another plane to Napier, then drive to Hastings.
My in laws has a friend with Lupus that lives there. I will try to find out if she sees a rheumatologist, and what they think of him/her.
Posted 17 December 2009 - 04:57 PM
Thank you for your kind thoughts. Most of all I would like to say that I hope you enjoy your time here. We have a great little country and Hawkes Bay where you are going is particularly lovely - as are most parts actually.!!
Regards from Judy T
Posted 11 January 2010 - 10:33 PM
I had a telephone conversation with my Gastro Dr. today and I am left with a few questions!I think I really do know the answers but wonder what others have found.
I told him that I had chosen a Cardiologist and have an appointment for Friday this week, and his response was Why?
Because I have PH.
Oh, don't get too hung up on that when there is nothing to be done, everybody is getting excited about it (i.e. he has had a report after my Lung Function and Exercise ECG ) just forget it!
But my general practitioner says I need to see a Cardiologist.
Oh well OK.
Now what I want to know from you people at the coal face is how much difference medication and other therapies really do make. I am sure he is mistaken in his presumption that there is still nothing that can be done.
I am starting to be impatient for Friday to come, I am finding stairs are harder this week, I haven't been to the gym because I have been so tired I just don't want to drive myself into town. Surely I don't have to just sit back and wait to get worse.
On the bright side, we had good rain today!!!! It has been so hot and dry that the lawn is cracking open and the garden soaks up every bit of water I put on it. This afternoon changed to hot and sunny again but it felt like a hothouse with so much moisture in the air.
I had better stop this or you will all get mad at me.
Keep warm over there.
I am looking forward to getting up in the morning and reading some good news from you all.
Posted 15 January 2010 - 08:21 AM
I'm surprised your dr. said to ignore the PH. My rheumatologist and cardiologist and pulmonologist all said exactly the opposite. I have mild PH, only showing up with exercise. I am currently being treated with Ambrisentan, which I think has helped (although I was only on it for one month, and I've had to quit taking it because my liver enzymes have shot up). I was walking further and faster with less breathlessness, and feeling less tired after taking the ambrisentan. I have been told that untreated PH can lead to heart failure, and its a really serious condition. I've also been told that PH is very treatable, and can be improved with medication, so if I were you I'd definitely follow up with a cardiologist.
Posted 15 January 2010 - 09:48 PM
Yes I agree entirely with you that PH should never be ignored (as if one could anyway) can you imagine going about your day huffing and puffing and not thinking about what is going on!!!!! I don't think so!!!
If you have read my post under incontinence, you will have seen that I went to the Cardiologist yesterday and he thinks it is likely that at this stage anyway my PH is due to the fact that I have Mitral Stenosis. I was lucky! enough to be born before antibiotics were in general use and it would seem that I must have had Rheumatic Fever as a little girl and I didn't know. I actually wonder if my Mother knew, but she died in 1994 so I have nobody to ask now. Anyway it is obvious that I have heart damage, and my mitral valve has been getting progressively worse since I have been having Echocardiograms because of the CREST
but what else I didn't know is that the PH can be a consequence of the progressing stenosis. Somehow I am feeling much happier knowing that because Mitral Stenosis is treatable and as long as I survive the treatment (most people do these days) I could be back to just CREST and a 60% chance of NOT having secondary PH from Scleroderma. Wahoo!!!!
Our lives are certainly a roller coaster ride. I had a message from a friend today saying she knew I was special but that sort of special was not what she had in mind!!!
I am fortunate to have really good supportive women friends who I spend time with every week, we all seem to have to see each other through dramas every now and then so we have had lots of practice at caring.
Best wishes to you and yours from Judy T in New Zealand.
Posted 26 January 2010 - 07:08 PM
This post is to say WOW and WAHOO!! I received a phone call about an hour ago from my Cardiologist who has conferred today with my Rheumatologist and between them they have concluded that my LUNGS ARE CLEAR!! and the PH is entirely due to the Mitral Valve Disease.
They have chosen a Cardio Surgeon to refer me to and with any luck I will get away with a Balloon Valvoplasty!!! NOT even open heart surgery.
Now I have to get on my way to the Pub to celebrate with a lemonade!!!
to everybody who has responded with positive posts.
Love and Hugs to the whole world but particularly to my friends