I have just had an Angiogram, and found that i have Pulmonary Arterial Hypertension, does anyone else suffer from this,

[patsyb]

Please how do you deal with this, and what medication are you taking. Waiting to see Professor Chris Denton at Derriford hospital Plymouth.

[Thelma]

Hi Patsy: Yes, I have PAH also, associated to my Scleroderma condition. I am on Letairis medication (1 tab daily) and Revatio, 100 mg. per day. They have helped me very well I believe over the last 2 years. I participated in a 22 week Lung Study research last summer. The program offered 10 weeks of classroom education and the 12 weeks included 2 follow-ups and physical fitness rehabilitation. I am an oxygen user nightly, and only have to use oxygen in the day for over exertion and/or extreme outdoor temps (heat/humidity or colder temps at times). I practice purse-lip breathing techniques when needed, practice Yoga/Pilates/Meditation, Stretch routines, light aerobics (with oxygen use varying) and light weight training; and I make efforts to stay regimented with my food/medicine/exercise and rest schedules. I have a quiet atmosphere in my home, around positive people and environments generally, which I believe contributes greatly to my progress. Some days are more challenging than others though with lots of prayers, faith and focus to helping myself feel as best as possible with also following my doctors orders and using common sense, I do quite well. - I truly believe that being closely in touch with our bodies, avoiding stressful situations, yet practicing as much of a 'calm' and positive attitude upon having to encounter unexpectancies, and being around cheerful environments/people - along with having hobbies that one can manage are all good approaches to be as healthy mentally, physically and spiritually as possible.

You are in my prayers, Patsy. I trust that you will receive quality care from your Doctors, that your Meds will be carefully selected and matched to your condition and with a determined attitude to feel as best as possible with adhering to Doctor's orders, listening to your body and incorporating a healthy regimen, you will manage this condition well and be considerably comfortable most times at least. GOD bless you and have a pleasant day and weekend ahead.

[MrsH]

PAH is not diagnosed by angiogram, rather, by actual pressure measurement using a Swan-Ganz catheter during a right heart catheterization.

By measuring this, the doctors have a better notion on how best to treat you. For example, a high wedge pressure (PCWP) indicates left heart trouble, and proscribes the use of the usual PAH treatments.

[uknlv]

I had the heart cath done last year and mine came back negative, which is great. I still have trouble breathing but at least it is one less thing that I have got. My breathing is worse in damp weather, I know it is always damp here in England lol, but if it humidy that gets me. So as long as there is a good bit of rain I am ok.

[dawn1972]

My cardiologist told me same as i had abnormal tets including slightly elevated pressures on my heart Cath so i was sent to a PAH specialist at o Michigan whim did not want to classify it as that yet. So, I'm going for another heart cath this year to see if there are any changes. Stay positive or try and wait till a specialist gives you results.

[CWats]

I too have PAH and am now working to be put on a lung transplant list as I have been told by several physicians it is now my only option. There are a lot of tests and procedures to be completed and everytime they tell me they are ready to evaluate my case they decide to do another test first. I was told about a month ago they were going to evaluate me and then the RN called and said I need another mammogram, dentist appt,, eye exam, Hep B booster, pap, etc, I just this week received a letter telling me I have to attend at least 12 transplant seminars, pulmonary rehab (it's every MW&F for 2 hours in the mornings) and now I have to have a colonoscopy...the testing never seems to end, two weeks ago I had a liver biopsy. Every 3 months I have Pulmonary Function Tests. I've had 3 cardiac catheters, 24 hour ph monitoring (I had to have a tube up my nose and down into my esophogas for 24 hours), this doesn't include the x-rays, scans, ECHOcardiograms, EKGs, blood draws (every week), GI studies, etc. One of the big problems is that with my husband as my support person he is required to attend all appointments that the hospital schedules (they send you letters telling you when your appointments are), my husband works a crazy schedule of 12+ hour rotating shifts and the hospital is 3 hours away. Compliance is extremely important!!! No missed appointments or blood draws, etc, it counts against you. I don't mean to discourage anyone, I go from being optimistic to pessimistic in a heartbeat! I am currently on Remodulin (I have a subcutaneous catheter in my stomach) which helps to get the blood flowing to my lungs a little better by relaxing the blood vessels that have shrunk due to the Scleroderma. I carry a pump in my pocket that delivers the medicine. I have to change the pump every 3 days and the site in my stomach has to be changed every 2 months (sometimes sooner), my husband does this. I am also on Adcirca, nifedipine, warfarin, evoxac, ursodiol, claritin, prevacid, oxycodone, gabapentin, tramadol, anti-nausea meds, 4-5 liters of oxygen (24/7), etc. I really hope you don't get this bad, as I wouldn't wish this disease on anyone (not even my ex-husband!). I wish you well and be sure to follow up and get a second opinion. Please forgive my venting.

[patsyb in reply to CWats]

Thank you for taking the time to answer me. I am now on medication, which is Viagra,, no side affects yet, but it is early days yet. I really am feeling for you, sorry that yours is bad. My medical team are really very caring, trouble is that it's a round trip of 170 miles each time, but health is very important. Take care and good luck