Hickman

Today is the placement of the Hickman cath. Hopefully. It will be placed in my chest so that the IV med can be distributed. For now it has been in my neck from where they did the heart cath. Mostly I've spent the last few days riding out the effects of the medication as it is raised to a higher dosage slowly. Yesterday I experienced a bigger headache, more flushing, and some leg and jaw pain. But, it eventually dissapated. The good thing with the Hickman is I will get out of the ICU, into a regular room, and have more mobility and privacy.

Everyone wants more details and it is really hard to give too much at this point. We know, left untreated I won't have much time left. We won't know how much the meds are helping until about two months down the road. I will be continuing the therapy, raising the dosage about once a week at home. At that time I will have some tests to see if the meds have helped stabilize the lungs, perhaps letting the right ventricle of the heart become stronger. That is what we really want to see because I could stay on the meds and have a few good years with a lifestyle change. If not I will be reevaluated on my placement on the transplant list.

Then we get to the transplant part. I started the tests and evaluations required. Of course they want to make sure the person receiving new lungs will be able to support the new lungs--both physically and mentally. For now I'm still being considered and then will be placed accordingly, depending on how I am doing on the meds and all these other tests. From what I understand, if I'm approved and don't do well then there is a chance to move up. But, as with the meds, we still have to wait and take it one day at a time. The double-lung transplant is a risky surgery and doesn't have the best outcomes for lengthening one's life. (Maybe I'll post those statistics at a later time.) But when you don't have a choice, it may be the only shot you have available.

I cannot express how wonderful everyone has been. My mother-in-law has been an angel, providing me so much comfort. Friends have banded together to help teach my daughter and providing food for my family. A lot of you have asked how to help and what we can do to prepare for the future. I think we will be needing a lot of help so ideas are welcome.