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Preliminary Update on Post-Clinic Changes

ChangeIt may be a bit early to tell how things are or are not better after some med changes after clinic, but we couldn’t be more optimistic thus far. To recap the clinic visit, we have changed (for 6 doses) Albuterol to a Duo-Neb Atrovent/Albuterol mixture, added a liver med (Urso), and an appetite stimulant (Remeron).

I started the Urso (ursodiol) on Friday night, taking it twice a day with meals. Not surprisingly, I have absolutely nothing to report about it, as it was intended to straighten out my liver enzymes. I should remember to mention to Sue, since I only think it odd at the moment and quickly forget to ask about it, my standing output (I’m a guy, think about it) has been what I’d call cloudy. I just figured it was all of the raw veggies that come across my placemat at different meals, but I really should ask. Hold on a sec, lemme write an e-mail.

Still with me? Good. E-mail sent. I’ll let you know what she says.

The Remeron (mertazapine) appears to have positive results in the side-effects department. Unfortunately I don’t seem to have a sunny disposition yet, but my appetite sure was up today AND I gained a whopping 1.5 pounds. Well, make that 2.5 pounds when you factor in that a donated a pint of blood this morning. After I donated, I ate a Rice Crispy Treat, munched on Combos, drank a Capri Sun and a Boost Plus, and then dove into a Double-Stuf Oreo Cakester after all of that. I was hungry for lunch and dinner and could still wander over to the pantry when I’m done with my treatments. We’ll see if it keeps up, but it does look might promising, especially given the state of my appetite for the last couple of months.

Now for the cool breathing news! The Atrovent/Albuterol mixture seems to be working out might fine. My baseline measure for how good a treatment is remains a solid test for our daily routine. After dinner, Beautiful really likes to sit and talk for what I consider “quite a while.” I may not think it is such a long time if I could breathe worth a dime after dinner. Most days our conversation ends with me literally gasping, taking my plate to the kitchen, and gathering up my meds to head to the couch. It hurts me to leave her hanging like that, but we both agree that air is more important than dialogue.

Last night, she noticed it immediately after dinner, but I was still skeptical because we ate a bit earlier than normal. I woke up to the typical “caked on” feeling in the front of my lungs because I’m a side/stomach sleeper, so I was disappointed. I noticed driving home around noon that I wasn’t labored at all and I made it through dinner just fine. The jury is still out for another day since day-to-day activities really can change one’s lungs, but this is promising AND it’s not really adding a new med since I have to take the Albuterol anyway.

After tomorrow night, I’ll do a day or so of normal activity again to have a miserable dinner to return to baseline and then I’ll start with the Spiriva to see how that works. I actually have a full prescription for the Spiriva that we’ve already paid the co-pay on, so I’ll take it for the next month and then decide if I need to have a longer trial of the duo-neb or just stick with Spiriva. Then we’ll know if the doctor can “put Spiriva back in his back pocket” as he said about an inhaled steroid.

Didn’t I tell you about that? No? Well, so much did happen Friday, it was bound to happen. We were discussing what treatments there are once “the decline” begins and he said that steroids help keep the airways open, to which I said that I remembered they don’t like to use that because of bone loss. He agreed, but when it comes to saving your life… bones can jump off the cliff (my words, not his). Then he said “… then there’s inhaled steroids. Those don’t have those complications.” My eyes got big and I started to grin, expecting some new, wonderful drugs that would make me feel like a 50 year-old… to which he shot to heck with “but we won’t give that to you yet. Leaving that in my back pocket.”

Picture your most melodramatic image possible of a teen in angst over terrible lover news. That’s what I felt like at the mention of a wonderful thing that we have to save for my worst days. Welcome to our world.


  1. Interesting post! I’m glad that your appetite was up, and I definitely hope it stays up.  I’m also glad that you were able to make it through the conversation without labored breathing – amazing! I hope it continues to work just fine.  That’s interesting that they are waiting to use the inhaled steroid on you – though I do get it.  I felt that way when they told me they had a drug to get rid of the MRSA in my lungs (I’m sulfa allergic) since I now culture 3 different strains of it.  Then they said..but not until you’re REALLY REALLY sick.  Well thanks…I’m pretty sure I’d be breathing a bit better if it wasn’t for the MRSA, but I’m not the one with the degree.  🙂  I sincerely hope all your treatments continue to work as well as they are now! 🙂 

    • I’m sulfa allergic, too. We were just wondering on Saturday if I should be tested for that before t-word talk to see if that opens up another dozen meds that can be used that have never been thrown at my gunk.

      • I think a sulfa test is a good idea. Your grandma always told me I was allergic to sulfa. Then one day the Dr. missed that and gave me high doses of sulfa for an infection. No reaction! Except the death of lots of nasty bacteria. 😉

        • So the moral of the story is that our moms are always wrong about allergies? Mine were always sulfa and augmentin. Rolfe asked what happens w/ augmentin and when I told him he said, “duh, that’s the primary side-effect.”