So… remember I said things never go as planned. That is now an axiom.

What nowMonday and Tuesday of this week were set aside for a whole lot of pre-tranplant tests in St. Louis. It’s a two hour drive from Columbia to St. Louis. We leave just on time… we’ve made this run before… a lot! About 45 minutes from our destination we get a flat… shit! Our first appointment is at 10:30 am. If we were roadies at the Indy 500, we would have jobs. Which is amazing and the power of motivation (because they are running a buttload of tests so I can have my transplant on the 27th. AND since I had spent the weekend in the hospital, again not what I had planned. A fever is an automatic trip to the hospital, again I caught a bug from one of my little loves and a staph infection. No we did not make it on time, but 5 minutes late is A OK at the hospital.

My first test is (and I have no idea what any of these tests are called) measures my heart. They inject two substances in you (lol… when they can actually find the vein), the first is a binding agent. This chemical binds to your red blood cells and some other substance… in this case a radioactive isotope. Then they scan you. There is no noise, just a big plate they move 3 times at different angles, each scan is 10 minutes long (its boring). Somehow, it records the flow of blood through your heart and measures the muscles of it as well. Why? Well… because intensive chemo damages your heart, and every organ in your body. But you have to have a baseline, so they can tell how much they fucked you up during those 8 days of chemo. Pardon my colorful language.

Afterwards, I am suppose to get a chest x-ray (didn’t I just have one, or two, or three the last few months) and an EKG. Had one of those too, more than once. In fact, in order to get pre-approved to get a transplant, they do most of these tests to see if you are healthy enough to qualify. But that was three months ago, so they don’t count. I am cynical, and think of the waste of money and why our insurance is so high. But at the same time, at least i know that my organs are in good shape… still.

The nurse coordinator tried her best to get all these tests packed in one day… lmfao. Nope. No way, we can do either test (x-ray or EKG) before I have labs and then see the doc. Plus, I was not even in their system to have either test done anyway. OK minor setback, we have to stay overnight anyway. The two “missing” tests can be done on Tuesday.

Labs… Medicine is still in the Middle Ages… they bleed you. I kid you not, they took 30+ tubes of blood out of me. I’m sure that each is for some important test, but they sure are not going to tell me there.

more tests

The doctor visit… not even sure why we talked, he had nothing new to say (I really do like the guy), but the nurse coordinator we did need to talk too. I said I was in the hospital the weekend before. And the staph infection, gotten… somewhere (lol… in the hospital) and we needed to make sure there was a plan of action to kill that bugger off. Best news… she knew I was in the hospital and had a staph infection. They are looking after me. I feel safe!

Bone Marrow Biopsy… I really hate pain. I have really hard bones. It really hurts. Some people don’t even need drugs to do one, except topical numbing meds. I get some Ativan, which makes you relaxed, and a 50cc injection of Demerol which barely numbs me; They refuse to give me more, without an anesthesiologist, which they won’t do (or the insurance wont pay for)…

ssshhhh… I take a couple extra of my own pain killers before. I know that is not wise, what if something should happen? But 6 months ago I did it with just their drugs and I finally screamed at the guy to just fucking get it done cus he was pissing me off it hurt so bad. I’m not nice when I’m angry, in pain, and only just a little bit looped. This was not the first time either. Like I said, I have really hard bones. You might not feel a thing, I hope not. Some people sail through this. But this guy was good, fast and checked to see if I was in pain, every minute. I hope I get him again. Between what i took and what they gave me, I cannot recall what happened until we got to the hotel. I can live with that.

The next day we get up early to do the tests we could not fit in the day before (i.e. x-ray & EKG), then off to do a bone density test. No big deal… no drugs, just lie there and they take a low-level x-ray of your bones. Again, baseline… no point in going into why.

Then we drive to what we hope will call home for our stay in St Louis. A series of duplexes called “Almost Home” [rentals]. (As opposed to just, Almost Home, which is for teen mothers and children; both are in St. Louis.). Anyway, this place is 2 miles from the hospital, the woman (Toni) rents almost exclusively to transplant patients and their families. She is totally awesome. We are crossing our fingers!

And that is how we spent Lincoln’s Birthday, and the next day too.

– Mark & Terri

 

 

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