Pictures!

Finally! Here are the pictures I promised of the photopheresis treatment. I tried to add captions to all the photos so you know what you're looking at. I just hope these pictures are able to help someone else feel more comfortable about starting photopheresis treatments.

https://picasaweb.google.com/leah92504/Photopheresis#

You may need to copy and paste the above link into your browser in order to view.

Photopheresis A-Z

What a roller coaster I've been on for the past week! I was scheduled to start my photopheresis treatments on Thurs 5/5, so Benito got the morning off of work and we headed to the hospital bright and early with butterflies tucked securely in my stomach. Once we got there the nurse comes up to me and asked if I heard that my insurance had revoked their approval for treatments. WHAT?!? No, I hadn't heard! I wouldn't be there if I had heard! So they had Benito and I sit there and wait for the charge nurse to show up to work and see if she were able to get in touch with my insurance company to get approval for them to start that day. After waiting an hour, we were told that we should go home and they'd be in touch. The woman who was responsible to get the insurance approval had requested it incorrectly, so the insurance company had approved the central line placement, but not the treatments. The following day I got a call from the apheresis team at UCD and was informed that they had gotten approval for the first treatment, but was still waiting for approval for the 30+ others that I will need down the road. So we scheduled my first set of treatments for Monday 5/9 and Tuesday 5/10.

Benito came to the Monday appointment with me. I've been a nervous wreck in anticipation for these treatments to start and not really knowing what to expect, so having Benito there to hold my hand and keep me smiling was a huge relief. I had asked him to take photos of the treatment being done along the way because I wanted to show others what the photopheresis treatment is like. It's been very difficult to find very much photos or patient experiences online, so I want to make pictures available for others to see to help with their nerves if they are going to be starting photopheresis too. Benito was so interested in every step of the whole treatment process that he took a Lot of pictures for you all! Once we get those pictures off of his iPhone and onto my laptop I'll post a link for you all to see them on my Picasa albums.

Let me start by explaining a little how photopheresis works...
The whole process takes between 3-4 1/2 hours from the time I walk into the room to the time I walk out. I'm given a nurse that works one on one with me during the whole process and she starts the first day off by taking labs through my accessed port-a-cath to see what my hematocrit is at that point. Hematocrit is the percentage of blood volume that is occupied by red blood cells. The goal HCT (hematocrit) for a woman my size is 38. If my HCT drops to 28 or less the apheresis team will require me to receive a blood transfusion before they will be willing to do a pheresis treatment. After the treatments go on, my hct level will probably drop because the nurse is unable to give back ALL of my blood cells at the end of each treatment and depending on how fast my body is able to make new cells, I may see a small drop in hct over time, but they do all they are able to do in terms of giving me back as much as my cells after each treatment so I can keep my levels high. Another reason why they check the hct is to determine whether to use a "small bowl" or a "large bowl" for the kit they use to pull blood from me. A large bowl will remove more blood at any given time from my body, so if my hct is low, I may feel woozy if they were to use a large bowl at that point, so they would choose a small bowl. The nurse said that for my size they will probably use a small bowl the entire course of the treatment because I just don't have that much blood in my body compared to a large person who would get away with using a large bowl. I hope that makes sense and you're able to keep up with me so far! (Please leave a comment with any questions you may have in this post if you would like something clarified!)
So after they get the blood results back, the nurse sets up the photopheresis machine with the kit including the large or small bowl (small bowl for me!). The machine does an automatic prime of saline mixed with heparin to keep the blood from coagulating while it's out of my body. After the line is primed I'm then connected to it via my port and with a press of a button my blood is pulled out at a pretty speedy rate (I'll be able to give you that actual speed once I can remember it). The blood is pulled into the bowl and the bowl spins very quickly to separate my red cells from my plasma (which includes my white cells). The process is making what they call a "buffy coat", which is composed of white blood cells and platelets that will sit above the leftover red blood cells. The machine can tell when the buffy coat is at it's peak, and then switches off to separate the buffy coat and send it to a collection bag and returns my red blood cells back to me. That is the first cycle. The machine will repeat the cycle 5-6 times depending on what my blood work suggests At the end and they have as much plasma as they can saved into the collection bag the machine beeps and lets the nurse know that it's time to "photo activate". The nurse infuses into the collection bag a chemical that is like what plants use to absorb UV from the sun. The nurse mixes the chemical with my plasma in the bag then switches on the tanning bed looking part of the machine and the machine will photo-activate my plasma for however long it thinks is necessary at the time (usually 30-50min). The blood will constantly be moving over the tanning bed into the collection bag and back through the tanning bed throughout the 30-50min "tanning" process. After the machine has decided it's photo-activated enough it will then switch over to send my photo-activated plasma to a different bag and then send it all back into me. I can tell when this is happening because I get a metallic taste in my mouth, which the nurse says is the chemical she infused into the plasma. A lot of patients can taste that chemical when the plasma is re infused back into the body. Once the plasma is re infused the machine switches off and the nurse then does a manual return to try and get whatever cells were left in the bowl and tubing back into me. Once that is complete she flushes my line and gives me a dose of heparin to keep the port from clotting in between treatments. After each cycle of the machine my nurse takes a blood pressure and it slowly goes down throughout the course of the treatment, but once everything is returned to me it goes back up to normal again.

The whole thing is very interesting the first time around, but I can see how it can get pretty mundane after a while and I'll be able to relax and sleep during each treatment. I'm able to drive myself to and from each treatment, so Benito only came to the 1st one on Monday and I went alone to my appt on Tuesday.

As far as side-effects go, I felt normal (with the slight exception of getting very cold) throughout the treatments, but started getting a headache during the first treatment on Monday and it didn't go away completely until last night (Tues night). The doctor overseeing the treatments thought the headache could be because of all the extra fluids they gave me, and wasn't too concerned about it. I came into my treatment yesterday with a low grade fever (99.8*) and am told to just keep an eye on my temps for a few days. I have to be extremely careful when going outside for 48 hours following each treatment because I'll be very sensitive to the sun and can burn very easily. So, I'm required to wear full coverage dark sunglasses, a hat, and sunscreen when going outside for 2 days after the treatments. After 48hrs the chemical that makes me photo-sensitive should be metabolized and out of my body and I should be back to my normal self.

I really hope all of this makes sense. It's a very long post and I commend you if you've been able to get through the whole thing! Like I said earlier, I'll post pictures of the entire process as soon as I can. Until then, here is a photo of me and my plasma ;)
This picture was taken just before the photo-activation began and what you see on that plate is my plasma ready to be ran through the tanning bed thingy lol.

Tomorrow is the day!

It's been almost a week since I've had my new central line placed. It ended up being another port-a-cath (much larger than the one I already have) placed instead of a broviac line. The pro is that it's all under my skin and I can shower and not worry so much about infection, but the con is that I'm not sure if the pheresis team is going to be happy when they see that the line I got is only single lumen. I'm really hoping they don't have me go back and get another line because the surgeon didn't do the one they wanted.

My first photopheresis treatment is finally scheduled for tomorrow morning (8:15am). Benito is taking the morning off of work to go with me. I'll have another appointment on Friday then probably twice again next week and so on for a 6-18 months depending on whether or not we feel it's working. I'm nervous and excited about getting it started. I'll be very sensitive to the sun for 24-48hrs after each treatment, so I've been told to get a good sunscreen and dark sunglasses to wear. I'm going to have to get new prescription sunglasses because the ones I have are not enough coverage.

On a slightly hopeful note, I had CF clinic this past Monday and my PFTs didn't show any decline since my last visit! That's the first time in a very long time since my PFTs have been the same instead of dropping between visits. It makes me think that switching my Azithromycin to 250mg every day instead of 500mg 3x a week has been helpful. I wish I would have known sooner that I was able to do that.

That's all for now. I'll try and post sometime this weekend about how the pheresis treatments went.