Thursday, September 20, 2012

I thought it was time for an update, although I don't have a whole lot to update. I did call a local allergy doctor and was told that they don't have a way to check for a contrast allergy here locally.  They can do the antibiotic allergies here, though. I called STL and asked if they wanted me to do the contrast and allergy testing there. The transplant coordinator called today and she wants me to do the testing locally for antibiotic allergies only. They are just going to assume that I'm allergic to contrast and will act accordingly when any tests/scans are done in STL.

As soon as I have the allergy testing done, I am supposed to call the transplant coordinator in STL and she will set me up to have the left heart cath and other testing done in STL shortly after the allergy testing happens.

On a more personal note, I have actually felt better the last week or so, so I am going to enjoy this for as long as I can! It hasn't been such a struggle to do normal, daily tasks, and that's been nice. I have also been walking on the treadmill  at least 5x a week! Woo hoo!

I will update again as I know more. Enjoy this Autumn weather!

Monday, September 10, 2012


I heard back from the transplant coordinator last Friday and she said that the pulmonary doctor wants me to go to a local allergy specialist to see if I am allergic to contrast dye. They also want to check for reactions to a couple of antibiotics before my being listed too.

The reason for this is that the last time I had a CT Scan, my back was beet-red right afterwards--it looked like I had sat in the sun for 2-3 hours. I didn't notice any other symptoms, but was on steroids, so that may have helped minimize reactions?  Also, the redness possibly wasn't even related to the contrast, but they want to make sure. I suppose that could really throw a kink in things if I am allergic to contrast, since that's used in so many scans/tests, etc. 

I contacted my family practitioner doctor's office today to see if he has an allergist he suggests and even if he can get me an appt soon, as I've heard it can take months to get in to see an allergy specialist, especially if you're a new patient. I have not heard back from him yet.

Then, depending on results of allergy testing, I will have a left heart cath (which requires contrast), a VQ Scan of lungs, and possibly 1 or 2 more tests before being listed. This isn't quite as cut & dry as I would have liked it to be. So now we wait and see...

I hope and pray that I'm not allergic to the contrast and I covet your prayers as well. Thanks!

Monday, September 3, 2012

I guess I didn't make it clear on my last entry that we are home. We came home on Thursday, August 30th. I don't expect to hear anything from the transplant board until this Friday at the very earliest.

It's been rough lately with breathing. Just about any exertion has me panting for breath. I have also heard of "normal" people complaining of allergies lately, so that may play a factor in the shortness of breath too.

Will update more later in the week...