I went back to the doctor for a follow-up regarding my right heart cath results and to perform a six-minute walk test. You can read about the right heart cath and results here.

Unfortunately, the doctor is quite concerned with my pressure levels in my right heart. They have increased severely and she is trying to decide on what the next best step is and when to take it. Right now she is keeping me on the same meds but has increased my oxygen use to “at night while sleeping” and “throughout the day as needed when I am in the house”.

About mid-January I will have an ECHO and follow-up with her and I expect the following to happen:

• Portable oxygen to be assigned, but am hoping that it will be the smaller container so that I can fit it into a shoulder bag. (Think Louis Vuitton makes anything that would be appropriate?) 
• Letairis may or may not go away but I would be given Tyvaso^®, a type of prostanoid medication that is inhalable (or breathed in) to help treat pulmonary arterial hypertension (PAH) (WHO Group 1).

I am getting better about using my oxygen, although I still try to avoid it when we have company. I know that I need to get over that insecurity, but I am working on it.

One of my friends really put it in perspective for me the other day. She came in to watch the Texans game and immediately asked me, “Where’s R2?”

It made me laugh and I showed her R2, which I had moved out of sight. Then, the whole Tailgate Team came over and saw how the machine worked, etc. I will have no problem using my oxygen in front of them and hope that I can continue in my self-confidence with it. I’m sure I can. It’s just that first step.

I am okay with my new normal, which will change again and again. Why? Because I have friends and family who love me for me and support me even when I don’t know it.

Thank you and I love all of you!

Yesterday I gave an update on my pulmonary hypertension and stated I was waiting for the doctor’s recommendation following my right-heart cath.

I finally received the doctor’s notes, which are summarized as follows:

• My pressure in my pulmonary arteries are up, which is bad
• Increasing desaturation, which means my oxygen saturation is not staying above 90-92, which is where most people go as their lowest number concerning oxygen saturation
• Other factors included, which “by all criteria [she] needs additional therapy, and we have little to offer”. That is because PH is not curable, not because she is giving up. Lots of other tricks up her sleeve depending on my body.

Options are as follows:

• New med, either tyvaso or ventavis. I’m currently on Letairis and Revatio. She doesn’t think Revatio needs to be continued as I am not benefiting from it.
• If my six-minute walk deteriorates to <450, I’d be considered for GRIPHON. (I don’t know what that is, but suspect it’s a Baylor program.)

I have my six-minute walk after Thanksgiving and am wondering if I need to “throw” it to get into GRIPHON, whatever that is???

Now, here is the fun part! Seriously! Remember that I mentioned I may get put on oxygen? Well, look at my new toy!!!

This is an oxygen compressor, for lack of a better description. It works like an air compressor but pumps out oxygen. It even makes the same noise as an air compressor!! (Well, a bit quieter.)

I am to use it “with effort”. This means that I don’t use oxygen all the time, but only when I’m performing activities that mess with my oxygen saturation, i.e., begin to leave me short of breath. For example, vacuuming or running up and down the garage stairs when unloading the groceries.

Next week they’ll give me a pulse oximeter to wear while I’m sleeping to see if I need oxygen while I sleep. Not worried about that right now.

Hubby is worried about me; but I already cried so I’m moving forward and wanting to make sure I use it correctly and be truthful with my daughter. Hubby asked what I was going to tell her and I said I would tell the truth, “I have a sick lung and the oxygen will help me”.

So, thus, this post is not titled, “well, shit”. It’s a new chapter; it’s nuts; but there is this adorable little girl who is my daughter with whom I must go watch “Gnomeo and Juliet”. Trust me, the movie is worse than receiving my “with effort oxygen”.

Love to all of you!

Yesterday I had my second right-heart catheterization (commonly referred to as a “right heart cath”). Right-heart catheterization is one of the most accurate and useful tests to get a definitive diagnosis for pulmonary hypertension. This is the only test that directly measures the pressure inside the pulmonary arteries, and gives my doctor the most pertinent information to help her decide what, if any, changes need to be made. This is not the only test she uses; she factors in a number of details and other tests.

My first right heart cath was in 2007, when I was diagnosed with PH.  Yesterday’s showed that my pressure inside my pulmonary arteries had increased and so the doctor was going to review everything and see if changes in my treatment are needed. (I am waiting for her to call; at the time of this writing, it’s been 24 hours.)

Last night I had a weak moment and let myself cry. Unfortunately my daughter caught me (she’s six), and wanted to know why I was crying. As a mother, I told her that my neck hurt, which was true as that is where they inserted the catheter. She is a smart girl and knows more is going on, but hasn’t yet figured out what to ask. She took good care of me, reading her books to me and giving me kisses. When she went to bed, I cried some more. I don’t want to go anywhere anytime soon, and I’m not saying I’m going to do so anytime soon. It just annoys me – no, it makes me mad – that I was once so healthy, I do what the doctors say, and still, I’m fighting PH. Know what? I’m going to be selfish – I’m MAD! It’s NOT FAIR!

That makes me feel better. I know I’m not alone in having such feelings; many of us have those feelings over different things/moments in our lives. I will move along; there is too much to do. Raising and loving my daughter, my husband, family and friends.

I have found myself not being online as much, but it is still a part of my life to stay in touch with friends across the globe. And, I miss working as much as I did. I wouldn’t mind doing some projects here and there. But each day is different and to quote Forrest Gump, “My Mama always said life was like a box of chocolates. You never know what you’re gonna get”.

I have made one decision. If the time has come to put me on oxygen full-time, I’m planning a trip to England. 

Thanks for listening (reading). Let me know of your questions and comments about anything. It’s good to share.

Savvy?

1) Why is Lindsey Lohan still in the news?

2) Does anyone else find it ironic that the media continues to keep up up-to-date on how much money the politicians who hope to run for President bring in yet none of that money is donated to help Americans in general? Think what a Super PAC could do for Americans.

3) Anyone else tired of Texas and Texas A&M acting like babies when it comes to trying to keep their rivalry game alive?

4) Why does every NFL team have to have a new stadium? Can’t they just update the locker rooms and keep it even? I mean, that money could help people in their state and of course, I’m tired of football ticket prices going up.

That’s all for now. Feel free to share your thoughts on my thoughts.

If you ever had the pleasure of meeting Tom, you know how much he will be missed. He was a great father, husband, friend, family man, and he cared about everyone. There was always smiling and joking going on, and he was a master storyteller. Some of the stories he shared about his adventures still have us in stitches.

One of the little things I’ll miss is his ability to name every band per song playing in a tavern.

He introduced me to Blue Moon beer and gave me grief over the fact that I always ordered potato skins. He shared how to enjoy an Astros game via a $5 ticket with easy access to the beer cart. We had fun people-watching and making up our own conversations about what we saw happening during the game.

He was rebuilding a Corvette and raising two sons with his wife.

My daughter asked about Tom the other day. My husband replied, “Mr. Tom is an angel in Heaven”. He was an angel here as well.

This GOES-13 satellite image is of Hurricane Irene just 28 minutes before the storm made landfall in New York City. The image shows Irene’s huge cloud cover blanketing New England, New York and over Toronto, Canada. Shadows in Irene’s clouds indicate the bands of thunderstorms that surrounded the storm.

As background, I decided to make this my first Chef Ramsay dish because it sounded so good when he tweeted about it.

“RT @GordonRamsay01 Rustic, Italian Panzanella salad. Perfect to eat in summer months. enjoy! G” http://t.co/2Wmw6z8

And, I’m challenging myself in different culinary ways, with Chef Ramsay’s dishes being the gold medal.  Confidence builder, here.

Made my own ciabatta croutons, fresh cucumber from the garden, tomatoes and red pepper from local produce market, red onion, basil leaves, olives and feta cheese. All mixed in a vinaigrette made from capers, minced garlic cloves, anchovies, extra-virgin olive oil and red wine vinegar. The full recipe is at the link above.

Enjoy!!!