Re: Re: Due Diligence on Pulmonary Hypertension

[Guest guest]

my transplant doc orders an echo once a year

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Due Diligence on Pulmonary HypertensionTo: Breathe-Support Date: Tuesday, August 11, 2009, 12:26 PM

BethWell, as to the doctors, they are all listed on phassociation. org. Sothat simplifies that process. Many would be at IPF Centers of Excellencetoo. But the listing even shows how much of each treatment they do.Fortunate too that my other doctors knew the one at UTSW and recommendedhim. Sad fact, Plano is no different than most cities. As my doctorssaid firmly, there isn't anyone in Plano qualified to treat PH. Manyplaces have that with PF. Fortunately Plano doesn't as UTSW feeds manypulmonologists here from their IPF center. Yes the testing has been amajor inconvenience, but nothing like PH might have been if I had it andit wasn't detected.Unfortunately, if I'd ever not had the drive to get checked out, we'vehad members who have taught me the lesson of PH in a poor way. Joyce(for those who are new, Joyce was a moderator on the board and memberfrom the start) and Lou

(recently deceased as well for newbies).I'm sure there have been others. But you see Joyce's struggle and then Lou's not detected and if that doesn't make us all sit up and payattention, nothing will.It's my crusade for myself to not let anything take me or make me worseother than the IPF. I'm going to force it to run its full course.>> Bruce,> I'm so glad that your tests are turning out so well. I know it is arelief to get the word of a pressure reading of only 18. That's reallyfabulous especially this far into your battle with lung disease. It isworth the trouble to be vigilant.> Back 20 years ago people diagnosed with PAH lived

an average of only acouple of years after diagnosis. The situation is very different now.Diagnosed early PAH is treatable to a very large extent.> IT is a royal pain to find the doctors and do the testing that needsto be done. We most often have to educate ourselves and advocate forourselves. It is very much a full time job but since I want to stayaround here for a while yet, I'm going to keep doing it!>> Again so happy you are getting such good results from your tests!>>> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>>>>> ____________ _________ _________ __> From: Bruce Moreland brucemoreland@ ...> To: Breathe-Support@ yahoogroups. com>

Sent: Tuesday, August 11, 2009 9:55:35 AM> Subject: Due Diligence on Pulmonary Hypertension>>> I've often posted here my concern about any potential of pulmonary> hypertension as it is a very possible and very serious complication.> More than anything else, we use our oxygen and maintain our sats totry> to prevent it. Unfortunately we have situations where we figure outhere> on the forum someone likely has it but their doctors haven't been> diligent. Then it may be too late. Pulmonologists bring you in forCT's> and PFT's all the time and they tell you very little that you don't> already know from your sats and your use of oxygen. But you do need> regular echocardiograms and that means to me if you've got PF youshould> have them at least annually. Then at any sign of an issue every six> months. This also comes from the

Pulmonary Hypertension Center atUTSW.>> Now, my most recent echocardiogram showed pulmonary pressure of 47, soI> made an appointment with the PH expert nearest me. There is a listingon> phassociation. org. First he did his own CT (every hospital wantstheir> own), his own echocardiogram, a six minute walk, PFT's, and ran dozens> of labs. I also had a VQ to check for blood clotting/embolisms. The> echocardiogram there only indicated a pressure of 30 mmHg but itshowed> a severely dilated right ventricle, mild to moderately reduced right> ventricular systolic function, mildly dilated right atrium, mildvitral> regurgitation, mild tricuspid regurgitation, and milk pulmonicvalvular> regurgitation. The diltaed ventricle was a source of concern so I did> have a right heart catheter.>> For those who hear heart catheter and get scared this

isn't the scary> one. Left catheters do require remaining flat for six hours, sometimes> overnight stay. Right catheters are in your veins, not arteries. They> are under local anesthesia only. They go in through your neck(sometimes> groin if your build makes neck a poor choice). They put a needle in> several times and places to deaden you and then proceed. I was able to> watch on the same screen they were looking at. Now, the result, known> during the course of the test, was that my pressure was only 18, well> within the normal range of 25. So definitively concluded no PH. As we> know, echocardiogram is used to indicate the need for a catheter, but> the only way to measure pressure accurately is with the catheter.>> As to the other things, cardiologist said some of that was often seenin> PF'ers and PH doctor believes that they are actually not issues

either> based on the catheter but just another example of the limitation ofthe> echocardiogram. Regardless, I'm scheduled for a Cardiac MRI to besure.>> As to echocardiograms, I'm now on a six month schedule and as long asit> doesn't top 50 or I don't experience other issues won't be concerned.> However, top 50 or other issues and another catheter.>> What if I had been found to have PH. Then treatment. See, it is> treatable especially if found early enough. There is Tracleer,Revatio,> Iloprost, and then for more serious Remodulin and even Flolan,although> frankly I would never do Flolan. But thats just personal.>> So,>> Lesson 1-Regular Echocardiograms> Lesson 2-Issue on Echo get to a PH expert. There aren't that many and> you may need to travel. But, while regular cardiologists can do the> catheter for you,

they are not qualified to treat PH if you have it.> Lesson 3-Get Right Heart Catheter> Lesson 4-Echo can give you false alarms. Now I'd also say that ifyou're> experiencing major symptoms of PH without your echo indicating, still> get to a PH expert.> Lesson 5-Pulmonary Hypertension is treatable. The sooner caught the> better.>> End of today's lecture and sharing of my experience. There were two> possible outcomes. One, I had PH and would get treatment. The other, I> didn't have it. Either is far better than worrying about the> possibility.>