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#
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Friday, May 20, 2011
Wednesday, May 11, 2011
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.
Wednesday, May 4, 2011
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.
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.
Tuesday, April 26, 2011
Here we gooooooooo
I got the call yesterday that my insurance has approved the photopheresis treatments!! I was so happy I couldn't stop crying. I'm being given another chance to live; I just hope these treatments work and I can keep these lungs of mine for many more years to come!
This morning I got another call saying I need to check into the hospital at 9am Thursday morning to go into surgery/interventional radiology and have my new central line placed. I'm under the impression that as soon as that's placed they'll start my first photopheresis treatment. Not sure yet if I'll have to stay overnight. Benito will be going into work early that morning so he can get a few hours of work in before having to take the rest of the day off to take me to the hospital and sit with me through the first treatment. We're both nervous, but very hopeful at the same time.
This couldn't have come at a better time (okay, if it were next week, then it would have been easier on us, but oh well!). We got the majority of our stuff moved over to our new apartment in Roseville this past Saturday and plan on going this evening after he gets off work to go load up the remainder of our things and begin cleaning. I'll go alone tomorrow back to Yuba City and pick up my sister and she and I will clean until it's finished. That way it will be done before I have to start treatments and who knows how useless I'll be after having that new line placed. I'd feel better knowing it's all done and we can turn in our keys asap.
So that's my good news! I could use your continued support and prayers that these treatments work. It may be months before we even see my PFTs stabalize (if they do at all), but I'll keep you updated along this journey of ours!
This morning I got another call saying I need to check into the hospital at 9am Thursday morning to go into surgery/interventional radiology and have my new central line placed. I'm under the impression that as soon as that's placed they'll start my first photopheresis treatment. Not sure yet if I'll have to stay overnight. Benito will be going into work early that morning so he can get a few hours of work in before having to take the rest of the day off to take me to the hospital and sit with me through the first treatment. We're both nervous, but very hopeful at the same time.
This couldn't have come at a better time (okay, if it were next week, then it would have been easier on us, but oh well!). We got the majority of our stuff moved over to our new apartment in Roseville this past Saturday and plan on going this evening after he gets off work to go load up the remainder of our things and begin cleaning. I'll go alone tomorrow back to Yuba City and pick up my sister and she and I will clean until it's finished. That way it will be done before I have to start treatments and who knows how useless I'll be after having that new line placed. I'd feel better knowing it's all done and we can turn in our keys asap.
So that's my good news! I could use your continued support and prayers that these treatments work. It may be months before we even see my PFTs stabalize (if they do at all), but I'll keep you updated along this journey of ours!
Thursday, April 14, 2011
Ask enough and you shall receive
First of all I want to thank the readers of my blog who continually come back for updates even though I do not always have new ones to share. I also want to apologize for not updating more often. I've never been the kind of person who is able to write just a little at a time, so I seem to put off writing updates because I know it will take a huge chunk of time to do so and can never commit myself to sit down long enough with my laptop and write. I owe it to you all as friends who have offered their support and prayers to me and my family to write more often and give you the updates you come to read. So I'm going to do my best to write at LEAST once a month (a suggestion given by one of my readers) and update you something about what's going on with me. It may not be a long update, but I'll try to at least let you know how my health is holding up at the time. :)
Last I updated I was looking forward to my future sister in-law's wedding, which I was to be her maid of honor with. It turns out that four days before the wedding I got severe hives that covered about 90% of my body and no matter how much benadryl I would take, it would only get worse. After one last attempt of a cold shower to help with the hives and it failing miserably I broke down and had Benito take me to the ER close by. I chose the nearby ER rather than my CF center's ER because I thought it would be a quick in and out visit. They would give me an IV dose of Benadryl and I'd be all fixed! Wrong. I spent four hours in the ER waiting room sat next to someone who was certain he had H1N1 (yes, I wore a mask and didn't touch Anything, but it's still scary to be in a crowded ER waiting room being post transplant!). Once I got taken back to be seen the ER doctor was more concerned with the fact that I had stopped taking an antibiotic that I was [at the time] sure caused the hives and he wanted to find an alternate antibiotic to put me on at 1 in the morning, rather than treating my hives. He called my tx center, which is really not treating me anymore, so they were not sure why they were called. After a few hours he had the nurse push IV Benadryl and an IV form of steroid to help the hives. After she pushed the Benadryl, she immediately pushed the steroid and as soon as she did so, I got a very strange burning and tingling sensation throughout my body. By the time she flushed it through I was having trouble speaking and couldn't lift my arms or legs. I tried to tell her what was wrong, but it took forever to get a single word out. Poor Benito was so worried. The nurse asked Benito if my speech was always like that (even though she and I had been talking to each other perfectly normal minutes ago) and Benito said no, so she went and got the doctor. He didn't know what was going on, so he had me just wait and see if it got better or worse. After three hours my speech was beginning to get better and I was able to move my legs enough to walk with some help. So the doctor decided to discharge me and have me follow up with my doctor the next day. We got home at 5am and by noon my CF nurse called to follow up on the blood draw I had done the morning before (pre ER visit). Aparently my creatinine (kidney function) was at 2.8 (almost 3x my norm). She had spoken to my CF doctor before calling me and he wanted me admitted immediately for acute renal failure. I told her about the night I had in the ER and she said that severe hives is a symptom of renal failure and was disappointed the ER doctor never did any blood work before giving me that large dose of steroid (which causes more strain on the kidneys). So I was admitted into my CF center and hooked up to IV fluids, had a foley cath placed to drain my bladder and had my Prograf held for a few days until my creatinine came down. My Prograf (immunosuppressant medication) level in my blood was at a very toxic level of 30 (my doctors try and keep it from 8-9 at all times, so we figured out that the antibiotic I was put on a week prior had increased the toxicity of the Prograf I was taking (although I did decrease the dose of Prograf I was on as directed by my physician). My levels came down low enough that my doctors allowed me to be discharged the evening before the wedding, so although Benito, his father and I missed the rehearsal and dinner, we were able to be there for the entire day of the wedding! The wedding was beautiful and we all had a wonderful time. I got to meet a lot of Benito's family that I hadn't met yet, so that was a real treat.
Just before being discharged from the hospital, the pulmonologist that had did my eval for transplant came in and saw me and discussed options for me to consider regarding treatments for rejection. He said he personally had experience with both rATG and photopheresis and found them to both be not a sure fix, but he was more comfortable trying photopheresis on me. I have three lingering infections in my lungs that we just can't seem to take charge of, so he didn't think using rATG on me was safe as it would allow the infections to worsen when my immune system dropped. Photopheresis is a procedure in which I would have to get a new central line placed with 2 lines, one that would remove my blood and the other that would place it back into my body. while the blood is out, it will be shown a special kind of light that will kill T-cells and them place the blood back into my body sans T-cells. The treatments will all be out patient, starting twice a week for a while then tapering off slowly. The doctor said we will hopefully see a halt in lung function loss within a month or two and if it seems like it's working we'll continue the treatment for six months. He has only worked with three other patients with photopheresis and these are how they worked: Pt A: halt in lung function decline, but no improvement. Pt B: Pt actually gained 10% of their lung function back and the signs of rejection disappeared. Pt C: Pt continued to lose lung function / photopheresis showed no benefit for this patient. So I'll be his fourth patient he's tried this on and I'm hoping to at least halt the decline, if not get some improvement. Really though, I'd be happy to just not lose any more lung function! Once my insurance approves the treatments I'll have the new line placed and hopefully get started on the photopheresis as soon as possible!
Benito and I had been talking about moving closer to his work (as it is, he's commuting 2hrs a day round trip to work), and with the gas prices on the rise, it's gotten to be so expensive to live so far away from his work. Now with the photophesis treatments in my future, and all the driving I'll be having to do to and from my hospital our decision was made for us; we needed to move asap. We spent a few weeks looking for a place that we were allowed to bring our dog, Roxy and as of a week ago, we've found an apartment 10min away from Benito's work, 25min away from my hospital and they allow Roxy! We'll be getting the keys to the new apartment on the 23rd and it looks like we'll be spending Easter driving a U-Haul packed full of our stuff to our new home in Roseville!
Last I updated I was looking forward to my future sister in-law's wedding, which I was to be her maid of honor with. It turns out that four days before the wedding I got severe hives that covered about 90% of my body and no matter how much benadryl I would take, it would only get worse. After one last attempt of a cold shower to help with the hives and it failing miserably I broke down and had Benito take me to the ER close by. I chose the nearby ER rather than my CF center's ER because I thought it would be a quick in and out visit. They would give me an IV dose of Benadryl and I'd be all fixed! Wrong. I spent four hours in the ER waiting room sat next to someone who was certain he had H1N1 (yes, I wore a mask and didn't touch Anything, but it's still scary to be in a crowded ER waiting room being post transplant!). Once I got taken back to be seen the ER doctor was more concerned with the fact that I had stopped taking an antibiotic that I was [at the time] sure caused the hives and he wanted to find an alternate antibiotic to put me on at 1 in the morning, rather than treating my hives. He called my tx center, which is really not treating me anymore, so they were not sure why they were called. After a few hours he had the nurse push IV Benadryl and an IV form of steroid to help the hives. After she pushed the Benadryl, she immediately pushed the steroid and as soon as she did so, I got a very strange burning and tingling sensation throughout my body. By the time she flushed it through I was having trouble speaking and couldn't lift my arms or legs. I tried to tell her what was wrong, but it took forever to get a single word out. Poor Benito was so worried. The nurse asked Benito if my speech was always like that (even though she and I had been talking to each other perfectly normal minutes ago) and Benito said no, so she went and got the doctor. He didn't know what was going on, so he had me just wait and see if it got better or worse. After three hours my speech was beginning to get better and I was able to move my legs enough to walk with some help. So the doctor decided to discharge me and have me follow up with my doctor the next day. We got home at 5am and by noon my CF nurse called to follow up on the blood draw I had done the morning before (pre ER visit). Aparently my creatinine (kidney function) was at 2.8 (almost 3x my norm). She had spoken to my CF doctor before calling me and he wanted me admitted immediately for acute renal failure. I told her about the night I had in the ER and she said that severe hives is a symptom of renal failure and was disappointed the ER doctor never did any blood work before giving me that large dose of steroid (which causes more strain on the kidneys). So I was admitted into my CF center and hooked up to IV fluids, had a foley cath placed to drain my bladder and had my Prograf held for a few days until my creatinine came down. My Prograf (immunosuppressant medication) level in my blood was at a very toxic level of 30 (my doctors try and keep it from 8-9 at all times, so we figured out that the antibiotic I was put on a week prior had increased the toxicity of the Prograf I was taking (although I did decrease the dose of Prograf I was on as directed by my physician). My levels came down low enough that my doctors allowed me to be discharged the evening before the wedding, so although Benito, his father and I missed the rehearsal and dinner, we were able to be there for the entire day of the wedding! The wedding was beautiful and we all had a wonderful time. I got to meet a lot of Benito's family that I hadn't met yet, so that was a real treat.
Just before being discharged from the hospital, the pulmonologist that had did my eval for transplant came in and saw me and discussed options for me to consider regarding treatments for rejection. He said he personally had experience with both rATG and photopheresis and found them to both be not a sure fix, but he was more comfortable trying photopheresis on me. I have three lingering infections in my lungs that we just can't seem to take charge of, so he didn't think using rATG on me was safe as it would allow the infections to worsen when my immune system dropped. Photopheresis is a procedure in which I would have to get a new central line placed with 2 lines, one that would remove my blood and the other that would place it back into my body. while the blood is out, it will be shown a special kind of light that will kill T-cells and them place the blood back into my body sans T-cells. The treatments will all be out patient, starting twice a week for a while then tapering off slowly. The doctor said we will hopefully see a halt in lung function loss within a month or two and if it seems like it's working we'll continue the treatment for six months. He has only worked with three other patients with photopheresis and these are how they worked: Pt A: halt in lung function decline, but no improvement. Pt B: Pt actually gained 10% of their lung function back and the signs of rejection disappeared. Pt C: Pt continued to lose lung function / photopheresis showed no benefit for this patient. So I'll be his fourth patient he's tried this on and I'm hoping to at least halt the decline, if not get some improvement. Really though, I'd be happy to just not lose any more lung function! Once my insurance approves the treatments I'll have the new line placed and hopefully get started on the photopheresis as soon as possible!
Benito and I had been talking about moving closer to his work (as it is, he's commuting 2hrs a day round trip to work), and with the gas prices on the rise, it's gotten to be so expensive to live so far away from his work. Now with the photophesis treatments in my future, and all the driving I'll be having to do to and from my hospital our decision was made for us; we needed to move asap. We spent a few weeks looking for a place that we were allowed to bring our dog, Roxy and as of a week ago, we've found an apartment 10min away from Benito's work, 25min away from my hospital and they allow Roxy! We'll be getting the keys to the new apartment on the 23rd and it looks like we'll be spending Easter driving a U-Haul packed full of our stuff to our new home in Roseville!
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