Monday, December 30, 2013

Stop all this rejection!

Here we go again! The story so far; Maddy has been fighting the rejection that started back in June for the last six months with not much success. Overall she has not really felt good for the last six months. She can barely breathe, gets winded when she walks a few feet, and she has not been able to gain back the weight she lost during the rejection. Her antibodies initially went down a bit in response to the pheresis and IVIG. They continued IVIG every month for the last six months. On Dec 18th Maddy had a clinic visit. Her pulmonary function levels were still stuck where they have been since the rejection episode in June. They also ran blood work to check her antibody levels again. Then on Dec 20 she went in for her final round of IVIG. She got the usual call after her appointment saying that her prograf levels were off so they adjusted the dosage and ordered blood work for Dec 26. The next day, Friday, they called and said her antibodies were still too high and that she needs to go back into the hospital to stop this rejection. So here we are today.

Dr. Rolf said that the IVIG targets your B cells and that usually does the trick for stopping the production of antibodies. But Maddy's T cells are apparently very active and keeping the antibodies in production. They plan on doing another round of pheresis, see explanation at the bottom of this old blog entry, followed by thymoglobulin. Dr. Rolf said thymoglobulin is about the same as IVIG, but attacks all the antibody producing cells instead of just the B cells

The plan is five days of pheresis followed by thymoglobulin. Should be out of the hospital in 8 days or so.

So that brings you up to date onto our visit so far. Dr. Rolf wanted to make sure we got the pheresis started right away so he personally put the large bore line I her neck. I was able to stay and hold her hand through the procedure. You may remember the fun Maddy had getting this line taken out at the end of her last visit. If not, here is a refresher. Needless to say she was not looking forward to getting another one of those lines placed. When she found out they were going to do it in the room with a local anstethetic, instead of down at interventional radiology where they sedate her for the procedure, she was less than happy. They gave her an oral medication to help her anxiety about the procedure but we all know that doesn't work worth a crap. I was able to hang out during the procedure and they even made me wear a hair net, which did provide a little comic relief to the situation. So here is how this procedure works. Do not read the next paragraph if you are squeamish.

The line goes into one of the veins in your neck, in this case on her right side. The doc starts with a quich sonogram scan to see if the vein looks like its accessible. He showed us the vein and said it was huge and will be an easy stick. Then the prep starts. Lots of gowns and blue paper to cover everything and make a sterile field. Then the bed goes up, and her head points down. After about 10 minutes of set up, during which Maddy's anxiety had a chance to marinate into a fine frenzy, he was ready to apply the lidocaine and get to work. Pheresis used the sonogram to spit the vein again and then hit it directly with lidocaine. Ever see a movie where he bad guy jabs a needle straight into a persons neck? Yeah, that! Then he gets an even bigger needle and jabs it directly into the vein. While holding his finger on the new needle he then gets a wire that looked to me to be about 4 feet long and threads it into the vein through the needle. The wire is coiled up in a convienient little sleeve so the doctor can thread it in with only one hand. Well as our luck usually runs the wire was jammed and the doc had to fiddle with it for about two minutes before he could get it to work. With that finally done it was time for more lidocaine. This time in the skin around the puncture to get ready for the big catheter he is about to jab into her neck. Here is a lovely picture of the one that came out last time, it's about the size of a drinking straw. After the lidocaine had about three seconds to take effect the doctor made a small incision in her neck to make room for the drinking straw. It was very obvious by the look on Maddy's face that she felt every bit of what was happening to her. After that he threaded on another slightly smaller catheter into her vein that, I think this one is just a place holder but I don't recall hem removing it. After that it's time to put in the line. Using the wire as a guide he then threads the large bore line into the vein and then removed the wire. Ever see a plumbers snake come out of a drain? Yeah, like that only bloody. Remember all the blue sterile stuff I mentioned before? It was draped over Maddy's chest and that is where he doc slapped that bloody wire, thwack! After that he flushed the lines and capped them off. Sutured the line to her neck so it does not come loose and dressed it. This is Maddy about 20 minutes after the line was placed.

Can you tell she was not very happy? Dr. Rolf said she did so good and was such an easy procedure that he gave her a lung lapel pin. These pins are what he bought the transplant team for Christmas this year. Ginger, the transplant nurse who assisted him today, told us that nobody except team members got one of those pins! Maddy is very special. She put the pin on her purse...

It's been about an hour and a half since they placed the line and things are running as well as can be expected. Maddy is still in a lot of pain but they gave her some Norco and she says it only hurts when she moves. And as if on cue the guy gets here for her first round of pheresis! Time to fiddle with a fresh wound!
They still have to place another line in her to use for blood draws and any IV medication they will need to give her while she is in. The doc said usually they do a pic line but Maddy has not had any luck with those so they are ordering another one of those little lines that will go in her neck near this big one. Just like last time. Hopefully now that they have this big line in they will be able to knock her out to do the little one down in interventional radiology. I guess we will find out later. Dr. Rolf told the nurse there is no hurry on the second line so they will work her into the schedule when they can.
I have packed up to hang out with Maddy for the next few days. I have to cover the morning show tomorrow but then I'm off on New Year's Day. Gonna have to find somewhere to get us a new year dinner! I'll update again if anything weird happens. Otherwise I'll just give boring little updates every few days. I will leave you with the comic relief I provided during Maddy's procedure.

Needless hair net selfie!