6 Treatments Under My Belt

The last few weeks have been a little bit crazy. On Friday March 4, I had a Hickman Catheter placed. The procedure was uneventful. When I got home, and as the local anesthetic wore off, I started having a lot of pain in the area of the placement. Over the next couple of days, the pain continued and I was living on Percocet around the clock.

The following Monday, I was scheduled for my first photopheresis treatment. David took me and it went very well, except for the continuing pain from the catheter. In essence, the treatment is as follows. I'm hooked up to a blood-filtering machine. A pre-determined safe volume of my blood is removed from me and collected in the machine. It then spins and separates my blood into components, collecting the "buffy coat" for treatment. As I understand it, the buffy coat is a mixture of white blood cells and platelets. The buffy coat is then mixed with a chemical called Uvadex that makes it sensitive to UV light. The Uvadex-treated blood is then exposed to UV light and then, I get it all back. Very hi-tech, very sci-fi.

It takes a couple of hours and, add to that the hour and a half travel time between my house and Stony Brook in each direction and you've got yourself a whole day.

I felt fine after the first treatment except for the continued catheter pain. The next morning, Tuesday, I woke up and I was in a ton of pain. The catheter was really hurting me. I couldn't sit up or stand up. I was ok as long as I was laying down. I called the hospital and they told me to come in. So Illana drove me back to Stony Brook and they decided that the catheter must have been touching a nerve or something and that they were going to pull it out and put in another one on the other side. It was a very difficult day for me. They were giving me pain killers but I was still in pain and .... it was just real bad.

Thank God things got better after that. This new catheter has been working well and has not been too painful. Even though I hate having it, after the last one, I can deal with this. I've had two photopheresis treatments a week for the last three weeks. Friends and family have been driving me there and so many have offered to drive me and I'm truly, truly grateful. This past Wednesday I drove myself for the first time and it was really ok.

Last Wednesday, my BFF Sunshine drove me. She is an amazing friend and she thought she was doing her good deed for the day.... Little did she know. I had my treatment and it went great. We gathered up our stuff and were on our way out of the hospital when I took off my glasses to find my valet parking ticket. She looks and me and says "what's up with your eye". I'm like "huh??". She asks again and I have absolutely no idea what she's talking about. So she tells me that we have to go back to the blood center. I have no idea what's going on. We go back to the blood center and the nurses AND doctors take a look at me and start freaking out! They're all "Oh My God!". They were scaring the hell out of me. As it turns out, I had a hemorrhage in my eye and, because during my treatment I get Heparin, it turned into quite a bleed. I LOOKED LIKE A MONSTER!! The entire white of my eye was full of blood and it was bulging! Really, really gross. They wouldn't let me leave until my doctor saw it. They called Dr. Schuster and he said he'd be there in half an hour. Two hours later....we're still waiting for him. During this time, I'm getting more and more anxious, thinking all sorts of crazy, scary things. He finally arrived, took a quick look and said "it's nothing", "it'll go away", "it has nothing to do with your blood counts because they're all great". We went home but I was still very uneasy about it.

The next day, I called my friend/neighbor Arnie who is an ophthalmologist. He was amazing!! He came over and took a look at it and reassured me. My vision was unaffected and he said that it would take a couple of weeks to clear up. Arnie, if you're reading this, I can't thank you enough. You're the best! It's been over a week and it's starting to look a little better (but I still look like a monster).

I know I'm writing a ton, but it HAS been a while. Now, how do we know if this treatment is working? Good question. So far I don't notice any changes. The true test will be when I can discontinue the Prednisone completely and NOT have a GHVD flare. I have an appointment with Dr. Schuster on Monday and I am pretty sure that we will reduce my prednisone at that time, I'm assuming from 30mg/day to 25mg/day. It's going to take a while but I'm hopeful.

Since my transplant, I've been told to stay out of the sun. Now, with photopheresis, it's REALLY important to stay out of the sun and to wear UV protective sunglasses. The exposure that my blood gets to the UV light makes me much more susceptible to sunburning and my retinas susceptible to UV damage.

This morning I got a call from the doctor telling me that I have C Diff and starting me on Flagyl...never a dull moment.

I think we've pretty much covered my whole deal. Now for the important stuff. Thank God the family's ok. Mom is doing well in Florida, loving that warm weather, hanging out with her friends and really enjoying herself. She still has the dizziness from her procedure but we're all hoping that it will go away, as her doctor told her it would. Most of the time, she's great.

David's doing well...working too much and dying for a warm weather beach vacation! I'm sure there's one in the planning stages. Jacob got accepted to George Mason University Law School in Arlington, VA. He's still waiting to hear from a couple of others, but he's pretty excited about this one. We're very proud of him! Rachel is in Jerusalem learning and teaching and being the best Rachel she can be. We're awfully proud of her, too. But we're not so thrilled that she's so far away. We miss her terribly.

I've got to finish preparing for the Sabbath. Thank you, dear readers, friends and family for your continued interest, love, support, prayers and good wishes. I couldn't have made it this far without you. Have a good shabbos and and great weekend. xoxo
Leah

Believe in Miracles!!