Wednesday, May 14, 2008

A new organ recital

Last month, I had a right heart catheterization and the results were astoundingly good. At my diagnosis, my right heart pressure was 120/52. This time, it was 41/15, with a mean of 26, which is completely normal. You may not have pressures this good.

Today I went to the PH clinic for my quarterly visit. In addition, I went to the pulmonary lab for pulmonary function tests (PFTs), which I had not had since August of 2006, shortly after I began treatment.

The results were awesome.

First, I did the routine six minute walk and I walked 450 meters (1476 feet), Doctors are generally pleased at anything over three hundred meters. And I did it completely without supplemental oxygen, on room air, and I never de-saturated below 94%.

Compare this to one in November 2006, where I walked about 1400 feet, but desaturated to 82% on room air, and dropped below 88% (the baseline for supplemental oxygen) at only 1:27 minutes into the walk.

Now, this is very good. However, without the oxygen, my chest hurt like a sumbich. The respiratory tech who did my tests, my pal Patty (she works in the gym where I go two days a week), kindly turned on the oxygen at the end of the walk so that I could douse the chest pain. And when I bent over to pick something up, that familiar pain of my strained pulmonary artery reminded me of why I was there. I tend to think that when my test numbers are good that I'm completely out of the woods. My body kindly explains otherwise.

Other tests were performed as well. The Forced Vital Capacity (FVC) is the volume of air which can be forcibly and maximally exhaled out of the lungs until no more can be expired. FVC is usually expressed in a percentage of an expected outcome based on your age, size, etc. This tells whether your disease is restrictive (PH) or obstructive (COPD). My percentage in 2006 was 75. Today it was 96, which is COMPLETELY NORMAL!

The FEV1 (Forced Expiratory Volume in One Second) is what it sounds like. Two years ago it was 70%. Today it was 91%, again completely normal.

The Lung Volume actually are just what they sound like, how much air you can take in. The results of the test (TLC) are expressed as a percentage of a predicted value, based on age, size, etc. Two years ago, mine was 66%, today they were 83%.

The only thing that didn't make a dramatic improvement, unfortunately, is the DLCO, the measure of how well you pass gas (no cracks) through the alveoli to the capillaries. This measure is the thing that makes them believe that my PH may be related to scleroderma. Two years ago the DLCO is 42 (which was actually up from 32 at my diagnosis in January of that year), and my DLCO now is 46. Better, but not like the others.

So, what does this all mean?

In three months, the doctor wants me to come back and do another set of PFTs and a CAT scan, to make sure that the PFTs hold true, and the CAT scan to determine if I have any lung scarring from the scleroderma. (Also the CAT will check that pesky pericardial effusion that I've been watching since its dramatic debut).

If the numbers hold good in August, we will then discuss reducing some of my medications.

This is the first time in over two years that I feel like I have any breathing room.

I actually saw two docs today, one who is part of an exchange program with the National Institutes of Health (NIH), the other is Dr. Ahmad, a partner of Dr. Nathan, my doc of record. The doc from NIH said that looking at my heart cath results from last month that my improvement was "unprecedented." He actually said that word! He said that people don't recover from PH this way.

The reason they want to wait for the CAT scan is that scleroderma can greatly complicate PH symptoms and treatment, and they want to make sure that I don't have any signs of connective tissue disease in my lungs before they take their foot off the medication accellerator. And I'm fine with that.

I do feel particularly lucky today. Perhaps I will buy a lotto ticket.

11 comments:

Colleen said...

This is really impressive news! I'm very happy that you've done so well with your tests this time around! I hope that it continues, and then maybe you don't have to be on so much Viagra! lol Hope you win the Lottery! Please remember the little redheaded chick up in the North if you do. hehe
Love,
Colleen :)

Jen said...

Ellen, This is great!!!
What a turn around for you...
So, you don't have a lot of gas exchange?LOL..JK...
Keep doing what you are doing..What a Trooper...

Lottery ticket, Yeah, remember I have a car fund and college fund for your adopted grandaughter going..LOL..BTW she likes Jags too!!
Take care
Hugs and love to ya,
Jen

ali said...

Ellen, Wonderful news! Now maybe "they" will rethink the outcomes that are possible with aggressive management....ali

Tony said...

Wow Ellen! I'm so happy for you! You've been very diligent in your fight & it's beginning to pay off.

Here's to hoping your recovery is long-term :-)

Merle said...

Ellen, this is great news. See, you are almost normal.... *;*
I am so happy for you and tests like you have just had give us all the hope we are looking for.
You done good....
Hope you bought that ticket and it was a big winner like you are.

Merle

Annette said...

Well, my little Okie (did I spell that right?)phriend, you are, as I have always thought, amazing!!
Annette

paula54 said...

Way to go Ellen! Your comment about passing gas, no cracks, was almost to good to not comment on. DUH! I just did. take care. Hope chat gets up and running.

TW(Terry) said...

Ellen all of this is fantastic news. After reading all of the test results and your explanations I can see how really knowledgeable you are about whats going on with your body and this disease. Very impressive. Your dilligence and attitude have probably had a lot to do with the degree of your great results. You even make me feel better...lol. Keep on keeping on......

TW

Ann said...

I'm so happy for you, Ellen. This all sounds like such good news, and you sound so elated, but also reasonable, about it all.

bernard n. shull said...
This comment has been removed by a blog administrator.
barbara said...

wow that is a great report and I am so happy you are feeling better. I hope I get that good report in september.

keep looking up girl.