Rochester, Minnesota about my care - the guru of Polycythemia Vera. And guess who took over for my doctor and who is now in charge of my care... that's right the doctor from Rochester. I strongly feel that it's God's plan for him to be over my care because he is leading all of the research studies for Myeloproliferative Disorders in several countries.
At 8:05 this morning I had my blood drawn at the lab at the Mayo - it's funny because Matt was with me today and I could tell him which Medical Assistant hurt when they take your blood and which ones you don't feel a thing with - that shows you how many times I've had it done - some even know me by first name. Luckily I got a good one and I didn't feel anything! :)
After that Matt and I went to the Cafeteria and had breakfast... Matt said it felt kind of like a date because we didn't have any kids! :) I guess it put a good spin on it! So we enjoyed the time!
Around 9:30 we headed to Medical Records to pick up the results of my blood test - I LOVE that I can get them that quick. My blood test were not too bad - my blood is still trying to rebuild since the accident. So I knew I was still clear from having to have my blood let out today!
We headed up to check in for my appointment at 9:40 and we actually got in a little early which was good because the doctor spent a lot of time with us. When the doctor walked in we felt completely at ease. The first few minutes he spent asking us about our kids and just getting to know us on a personal level which was nice because we had that personal touch with my last doctor too - I felt like a human and not just a medical chart. He spent some time talking to us about his passion of finding a cure for this disease and about the studies he has going on. Then he started to explain PV in a way that I never heard it before. I'll try to relay it in the best that I can over the Internet.
PV is Chronic Leukemia basically that invades the bone marrow. Chronic Leukemia is better than Acute Leukemia due to the fact that it's not as aggressive. Basically what is happening is I have a mutation in my genes (the JAK2 mutation) which was just discovered in 2005 and they just started trying medical treatment on in 2007 so it's very new and there isn't a lot of information on it yet. In a normal person the bone marrow has a light switch that is in the on position which makes blood cells - each blood cell has a light switch but they are all in the off position. So the bone marrow makes 1 blood cell then the next and then the next but the blood cells never multiply. In my case the JAK2 mutation is like having a piece of tape over the light switch in the blood cells and the switch is stuck in the on position. So when my bone marrow makes a blood cell that blood cell will then make 2 blood cells and those 2 blood cells will make 4 blood cells and so on which then over crowds my blood and makes it VERY thick. Which is why they have to keep such a close eye on my levels so that I can have it let out before things like blood clots, strokes, and heart attacks happen from the blood being too thick.
So what does all that mean??? Basically we have to worry about the short term and the long term. The short term is watching my blood counts to keep them under control. The long term is PV is known to change into two different things - one being Acute Leukemia which then becomes a lot more aggressive and treatment becomes more aggressive. The second is it could turn into Mylofibrosis which is not good either and would probably end up in a bone marrow transplant. Right now we can worry about the short term but I'm young with young kids that I want to be around for so we can't NOT worry about the long term. We have to try to prevent it from progressing and if it does progress we have to try to get it to reverse. Right now my doctor is going to focus on the short term - keeping my blood in check but he said over the next five years he will probably try different things to battle the long term. Right now there are several studies on JAK2 Inhibitors and Interferons that are working but they haven't been tested long enough to know all of the lasting effects. So basically over the next couple of years once the trials are going more and they know more about these drugs then my doctor will try them with me. He doesn't want to do anything right now because mine is "stable" and he doesn't want to do anything that might make it worse. My doctor can not say if it will progress or if it won't there is nothing that will tell them so the only thing we can do it wait. He's happy that things are okay right now.
So now what??? Well on my blood test it showed that I am VERY anemic which he doesn't want to be either because it just makes me tired and you just don't feel the best. So he had me go down and give 5 more vials of blood in which he will do a complete iron study and he is also running another test on the JAK2 study - we know I have the mutation because my blood was tested twice and my bone marrow was tested once and all were positive so we know that I do have the mutation. His concern is why am I so anemic - which the first scenario could be I had just had my blood let out before the accident so I was very low on iron already - when I had the accident I lost sooo much blood (they had two units waiting for me at the ER - but didn't give them to me because of the PV) during the accident that all my levels just bottomed out and I haven't been able to produce the iron that I need to. The second is something to do with the mutation that he wants to rule out. These test results will take 7-10 days so we are just waiting for the phone call to find out what the next steps are. I'm really believing it's from the accident because I know how much blood I lost - it was a lot. But what he told us would probably happen would be he would have me take enough iron to get me out of the anemic stage but still keep me iron deficient. The only thing with giving my body iron is my blood levels will go up quick so I'll then probably have to have some of my blood let out. He said it's a viscious cycle but it's probably what we will have to do to get everything back in balance. He said I would feel a lot better if we do that so I'm up for it!!
The other thing that he wants to do because I am so young with such a rare disease is he wants to send some of my family members a vial and have them go and have their blood taken and the blood samples would then be sent to Harvard so that they could study the genetics of the disease to see if there is a marker in the family history because he believes there is somewhere - not that they have PV also but that there is a genetic link. This doesn't just help me but it would be there for our kids and grand kids and my brother's and sister's kids and grand kids if any of them would get this as well they would know the family genes. It's a pretty cool thing and even though I haven't asked any of them yet I would hope they would do it! :)
It's the doctor's hope that there will be a cure in my lifetime if not he seems very hopeful that there will be some type of treatment to keep me around to see my kids and grand kids grow up. Matt and I felt very grateful to have this doctor over my care it opens up so many doors for different types of studies. He is so full of knowledge that we both just sat in awe. And he never wanted to put me in danger because I am young and I have young kids. I'm in very good hands exactly where God put me. Matt and I left the appointment with a renewed sense of hope but as the doctor pointed out we still have to keep it in the back of our minds that we don't know what's going to happen which way it will go but we will just keep that tucked away in the back of our minds for now. For now we are going to enjoy being married with 3 kids that keep us going and always on our toes. We love our life and will keep pushing forward!
If you ever want to donate money to something but don't know where to - donate to the Leukemia Foundation - this funds the study of all types of Leukemia even PV. There's a 5K next April in Phoenix I'm trying to talk Matt into doing it with me... anyone else want to join? :)
You did a phenomenal job explaining all that. I know writing these kinds of medical explanations out take a lot more word processing than if you were just to say it out loud. I was able to understand so much more about PV through this update.
ReplyDeleteI am strongly committed to praying for you everyday concerning this.
Love and Miss you greatly!!