Hello maryd, have you had the right heart cath yet? What did the Dr. say? I have seen many (8 or 9) doctors due to shortness of breath. The third or fourth one said Idiopathic Lung Disease (ILD). I had an invasive lung biopsy that didn't show anything. So another Dr. in the group said it was probably Pulmonary Hypertension but referred me to yet another Dr. outside of the group. After two years, with three breathing tests each time and another biopsy going down my throat this time, he said it was caused by my autoimmune system and gave me Azathioprine to suppress my immune system, and Dapsone, a low impact antibiotic, to help prevent catching misc. illnesses like the flu, etc. I had two more doctors at the same facility within the next year and now I'm seeing another Dr. in another facility. After a little over a year and another MRI of my lungs, we're now back to ILD. So I don't know if I have pulmonary hypertension or not. I only know I sleep with oxygen. I'm constantly fatigued. I carry oxygen if I know I'll be on my feet a long time. I live alone but I have developed a method of pacing all my chores both inside and outside the house. I truly wish you luck. And, if you feel like it, I would appreciate hearing the results of the right heart cath. Take care. @cognac

Hello Cognac and thank you for sharing your story. I'm sorry you have had such a difficult journey in our search for an answer. Did the Azathioprine and the Dapsone help you to feel any better? Did they do a R heart cath to rule out pulmonary hypertension? I just had my R heart cath yesterday so I am awaiting results. How low were your oxygen saturations that you needed the oxygen at night? My oxygen drops after I do any form of exercise.

Hello Cognac. I had my right heart cath last thursday. I was awake during the procedure and pedaling some bike pedals which had been secured to the end of the table. The catheter was inserted in the jugular vein in my neck. Pressures in the right side of the heart were measured while at rest, during exercise, and during recovery. I've been informed that the test results were normal. So I am back to square one in a quest for an answer to my symptoms. The insertion of the catheter was extremely painful and I felt an intense pain from the top of my shoulder all the way to the tips of my fingers. While the catheter was in place the doctor kept pushing on the area where it was inserted which also caused a great deal of pain. I still have pain in my neck 5 days later. I was told that an Attending cardiologist would do my procedure along with a "Cardiology Fellow". Well, I never saw the Attending. The "Fellow" or student did the procedure. It was an awful experience. i would caution others that are going to undergo an invasive procedure to demand an experienced Attending Physician who has done thousands of them. Teaching hospitals many times do not give you an option. There is a "bully-type" attitude that exists that has no place in medicine. I am still on the quest for an answer and I am looking into "chronic myocarditis" as a possible cause. I hope you are hanging in there and having more good days than bad. Does weather affect you? We have recently had 95-100 degree days with high humidity. I always feel much worse on those days.

Hello Maryd, I'm sorry I'm so late in replying to your kind comments/questions from Jun 15 and Jun 19. Thank you for sharing such incredible information. I have dr.'s appts. tomorrow - one of which is pure testing. I have no idea what they will be doing. I agree there is a "bully-type" attitude especially in teaching facilities. To answer your questions, I have no idea what my "saturation" was when I started oxygen at night. And I was so new to everything, I didn't even know to ask. The doctor said do it, so I did. That was at the first doctor's office. I've learned a lot since then. I feel the Azathioprine and Dapsone are helping. (Or maybe it's just psychological?) I have not had an invasive heart cath, but the fifth or sixth doctor did do a sonogram which showed nothing irregular. And, yes, weather DOES affect me. Cold, dry Winter days when the dew point is around 25 are awful. But I hate heat so much that I,too, am miserable on 95-100 degree days with high humidity. I truly wish you luck in your search. Please stay in touch and let me know how you're doing. Take care, Cognac

@myriad I dont have PH but had a by pass surgery before had heart catheterization never did I have any pain with it like you said I'm so sorry you had to endure this ,this is not right don't let the Drs bully you tell them no I I want you to see me .By law I think a student has to be attended by a Dr not left alone ,so sorry for you

Hello Maryd. I had a right heart cath done as well as others. The pulmonologist I was seeing about my PH said I had to have
a left heart cath or he couldn't help me. I am squimish about the groin cath and have declined. So I am out in the cold.
What do you know about right heart vs left heart catheritization? One more thing. I agree that there is a kind of bully-type
attitude, "I am right and you don't know anything". This does not meet professional standards. nor patient-care conceerns.

A right heart cath is the only way to verify PH, not sure what he's talking about...but the groin cath. is really no sweat.

Hi Maryd. If you have a doctor that refuses to cath you while you are having all the problems after other tests, I'd find a new doctor.

I've had a cath through the groin and it was not bad at all. You feel the sting when it first goes in, but it's only a little more than a regular shot. Afterwards, I just had to rest and be careful for a day.

@carolkel- I had to have left cath because I was having a HA and my LAD (Left Anterior Decending) artery was 100% blocked so it wasn't like I had much of a choice. I was fully aware of getting poked with that slight sting as others have mentioned and it was just fine.
I was awake for the whole procedure and had 2 monitors in my way from seeing anything. At one point I needed to scratch and proceded to do that and all of a sudden a god like voice was heard saying Mr. ... I am working on your heart at the moment and if you need to scratch, we have someone that can do that for you. Okey doke! Things went well after receiving a single stent and I even got a DVD of the procedure from my Dr.