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  • same, but more hopeful

    i touched base with eleanor today and they are remaining positive, while trying to stay realistic. greg has been having a rough time but has been holding his own and the family and doctors are happy about that.

    the big challenge has been getting his heart into a good sustainable rhythm. they’re using cardioversion techniques, including shocking his heart, to get his heart into a normal pattern. the ventricular specialist says that the right side of his heart has enlarged and is causing this to be not as succesful as they had hoped.

    he’s still on the ECMO to facilitate blood oxygenation, but they’re working to reduce his use of it since prolonged use is not ideal. today they did an echocardiogram and reduced some of his meds successfully, but didin’t keep the ECMO machine notched down for long since they want to make sure his heart can handle it. even with the ECMO, he’s only able to use his lungs to about 30% of their capacity, so they need to get that up.

    they are becoming concerned about neurlogical issues, but need to really assess greg when he’s not as medicated. he can sometimes follow simple requests, but sometimes is not aware of reality.

    he’s been stable enough today that they’ve planned a trip back to CT to take care of some odds and ends and will continue to take shifts at the hospital.

    greg’s big goal is to get off the ECMO and get his lungs working at a higher capacity so that that they can concentrate on normalizing his heart rhythm without the cardioversion. focus your postive energy and prayers to this goal. the more positive energy people can send the better. do it how ever it works for you… light a candle, say a prayer, take some photos you have of greg and put them somewhere where you can smile at him every day/hour to send your love for him his way.

    stay strong greg. you can do it.

  • Lung Celebration!

    Today I celebrate getting my lung one year ago. Woohoo! It’s been quite a voyage and continues to be an adventure every day. But things are going well and once I get this reflux stuff taken care of I hope it will be even better.

    Tonight I have some friends coming by for a small gathering to celebrate. Should be a good mellow time.

  • More Medical Fun

    Time for a bit of a health update. I’m coming up on my one year birthday on April 14th. Just to keep me from going too nuts celebrating, I’m going to be having stomach surgery sometime soon. The doctors think that I have continuing issues with acid reflux and are going to tie off my esophagus in my stomach. When they tie it off, it prevents the acid from coming back up. Though it doesn’t keep food from going in (though at first I’ll be limited to soft foods). While they are in there they will also open up the base of my stomach to help food flow a little bit better.

    I’m actually not that nervous about it. Maybe having surgery as major as a transplant makes one a little jaded. I was more bothered by the other options. One was do nothing and hope for the best, no reason to tempt fate there. The other was one where I’d have a drainage tube from my stomach and a feeding tube into my intestines. With an added bonus of just not eating food.

    No word on when exactly it will be, but I’m having a handful of tests next week in preparation for it. Including my favorite test, an endoscopy.

    It will all be worth it though. The reflux is something that may have been the source of a bunch of health issues, including possibly my initial lung problems. I’ll still probably never know for sure, but just having a possible cause is kinda nice. And I’d rather the reflux not cause issues with my new lung.

  • Teeth

    There are lots of fun side effects to getting an organ transplant. Most of these come from the various drugs you are on after the transplant. You get things that cut down your immune system, lots of steroids, etc. One of the more fun side effects is that you can lose bone density. I get treatments to help it, but I can only assume that this is at least part of the reason why I’ve had two teeth have hunks that have broken off in the last six months. I already feel fanatical about brushing, sheesh.

    Today it happened while eating a tuna fish sandwhich, I wasn’t even eating anything hard. Time for a trip to the dentist.

  • Remember

    Organ Donation rules.

    ~Ksazar Pictures Txstarwars

    May the force be with you.

  • Escape from the Hospital

    Thursday morning, I went up to Brigham & Womens for a bronchoscopy. They like to do them on me now and then to make sure that everything is all fine with my new lung (one of my breathing tests was a little bit off last time I went into the office). For lung transplant recipients it a fairly regular occurance. In the past year I’ve had 4 or 5 (already losing count).

    This time around my oxygen levels weren’t so great after the bronch. It is one of the list of possible side effects of the procedure (along with fun things like them collapsing your lung). So, that combined with a wacky heartbeat (got up to 200 yesterday) earned me a stay in the hospital for a night. At first I thought the worst thing was having to do those three day hospital stays for a steroid pulse. I’ve now learned that the worst thing is not being prepared to suddenly have to stay in the hospital overnight. Crappy TV, only got CBS (which wasn’t all bad, got to watch CSI), felt kinda grumpy, didn’t sleep well, etc.

    I’m home now, and the good news is: no signs of rejection. Of course that probably means some more strange tests to make sure nothing else is going wrong.

  • Speaking of Six Months

    I just got a great T-shirt that I’d ordered from Cafepress today.

    Tshirt saying I contain recycled parts

    To see what other products are offered, click on the picture above. And remember, being an organ donor is a good thing. Visit the Donate Life webpage for more information.

  • Six Months

    Six months down, hopefully many many many many more to go.

  • What Should I Do

    Coming up soon is the six month anniversary of my lung transplant (Oct. 14th). I’m trying to figure out just what I should do for this. Maybe some kind of get-together that weekend or maybe something this weekend. I definitely want to do something. Leaves look like they’ve got another few weeks so I’m putting that on hold. Maybe a fall BBQ? A nocturnal party with some music? Anyone up for actually coming down?

    I’ve been feeling really good lately. So I’m up for something fun.

  • Boston, Doctors, and Good Food

    I’m back in CT after two days of doctor appointments in Boston. They wanted to check out my heart, since my heart rate had been a bit irregular right after my surgery. The good news is that my heart is doing just fine.

    Then last night we went to Evoo, one of my favorite restaurants. I’d wanted my mom to go for a while, as I thought she’d really like it. And she did. I had the Chinese Box, my favorite thing on the menu, and as always it was quite yummy.

    Then today was my regular appointment at the transplant clinic. Everything looks to be doing okay. And the best news is they gave me the okay to drive. So I believe I’ll be taking a short drive tomorrow :). So happy!