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Recent Pulmonary Hypertension with ILD diagnosis, how can I manage this?
Hello Everyone!
Recently I had an echocardiogram that tells me I have a mild dialiated right ventrical, doctor says it looks like pulmonary hypertension related to ILD. Also to note, my blood work for my NT PROBNP test has steadily risen, six months ago it was 36, now my score is still considered normal but it is about double at 73.
Could anyone lend personal experience dealing with PA- ILD? How quickly should I “do” something about it? What can I do to improve this?
The doctor I saw was subbing in for my regular Pulmonologist, they looked fresh out of med school, but they suggested a right ventrical catheterization almost immediately.
I have felt more short of breath lately, I thought my asthma is having an exacerbation. I told the new Dr. I would wait to see my regular pulmonologist next month to take any further steps with the right ventrical catherization exam, asked him for a Presnisone taper pack to help with asthma for now.
Initially I read there are lifestyle modifications I could make to help with pulmonary hypertension. I drink a good amount of coffee thanks to a high energy (and high stress) job (2-3 cups a day), and enjoy wine/drinks when out to dinner, I hear this a no-no now. Also, I should do the usual- exercise more, eat better (I’m 50 and 135 lbs, not overweight).
Should I be worried about this new diagnosis and rush out to take the right ventrical catherization test? Can I take the nebulizer medication without doing a catherization exam? I am going on year 4 with knowing I have an ILD, so no longer surprised by a lot of things, but this has to do with my heart, so a little scary.
Good news, I went on Ofev a couple years ago and my decline is less aggresive, but unfortunately things are still declining just at a slower rate. My DLCO is currently 64%. Four years ago it was 75%.
Thanks in advance for any advice, I greatly appreciate this forum, everyone is always so amazingly helpful!
Pamela
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10 Replies
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Hi Pam,
I’ve had the same diagnostic tests you mention, as well as some others. All pointed to or confirmed the conclusion of pulmonary hypertension. As a result I’ve been taking sildenafil since last August and a recent echocardiogram showed a significant improvement! The catheterization was the last test before I started sildenafil; I can’t say whether it was a necessary precondition. The doctors at Yale aren’t shy about testing, and I just do what they tell me to do.
John R
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I was diagnosed with PH too, I have done heart-Cath twice. She prescribed Sildenafil 2/3 daily. I won’t lie to it has improved and it help with the breathing too. Try and do it
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My husband has ILD and recently diagnosed with pulmonary hypertension. He got put on TYVASO DPI the hopefully help with that. Lots of side effects which get better until he ups the dosage … start at 16 then 32 then 48 then 64 – 4 times a day. It’s been a struggle but he has not given up on it yet. Not sure if it is helping yet or not as it takes about 6 weeks to know this.
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Thank you all for the responses, it is nice to know there are others out there who have been down this road and gotten better. Big thanks for letting me know what meditations are prescribed.
Regarding how PA ILD “feels”, is it a heavy feeling in your chest, or does it feel like you can’t catch a full breath? After your initial diagnosis, were you able to go about your day, or did you have issues exercising, walking or doing daily chores?
My breathlessness is uncomfortable, but I can still get around ok.
Thanks in advance for sharing your experiences, greatly appreciate it, it is such a comfort to share with all of you going through the same life experience.
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Ah and one more question, when receiving the catheter in the heart, do you remember any of the procedure while they were actually in the heart? Does this hurt? I am definitely nervous about anything going into my heart..
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The right heart Cath does not hurt at all. They strap you down so you don’t move when they put the tiny wire in. I am now on sildenafil as the Tyvaso clinical trial was difficult and made me cough so much more. In order to get sildenafil, or probably other similar meds, I believe a prerequisite is to have the catheter procedure – I had previously had one a couple years ago, so I was able to get it after the info was given to my insurance for verification.
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Regarding the cardiac cath, it doesn’t hurt. I watched mine on the TV the doctor was using. Pretty fascinating. Just have to be super careful with the hole created in your wrist (assuming that is where they start. After the procedure, they will impress upon you the impoertance of taking very good care of your wrist,
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OFEV slows but does not eliminate IPF deterioration. If anybody told you otherwise, they are wrong.
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Thanks for the heads up on Slidenafil and Tyvaso. Looks like most everyone here has had a better experience with Slidenafil.
I talked to my regular Pulmonologist and she asked me to take the HRC, so I’m scheduled for a week and a half from now. Yes I’m scared but my doctor said she would be doing the HRC herself, and promised me a lot of relaxation meds.
The breathlessness I feel is upsetting, but I appreciate everyone telling me the medication has made this manageable.
Does anyone use supplemental oxygen for their condition? If so, did the use of oxygen become medically necessary shortly after being diagnosed with PH- ILD? Recently I feel like I need to start using it.
Thank you all for sharing your experience and wisdom.
Pamela
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I recently had a bi-lateral angiogram. They measured pressure between the heart and lung and I was dignosesd with PH. Pulmonary doc prescribed nebulized Tyvaso. Said there was some evidence that Tyvaso may also be helpful to IPF situation (slowing progression?). Medicare Part B (because the nebulizer is considered durable medical equipment) denied the claim stating my lung/heart pressure had to be greater for coverage. My Part D insurance denied Tyvaso DPI (powder) but my doctor is submitting a formulary exception request. Not sure if that will go through. Just for awareness of those with Medicare insurance seeking use of Tyvaso.
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