Another Relapse (rant)

[Dark_Phoenix]

So I went to have blood work done this week to check my clotting factors VIII and vW. Factor VIII is below one percent and vW clotting factor is so reduced that it showed up as absent on the test.

I've been taking my meds, doing my prophylaxis, taking care of my port-a-cath, going to the doctor every month, etc.. I know that over time, as I use the same kind of clotting factors, my body develops inhibitors to them (because I started treatment really young, like three years old) and that they had been reduced for awhile... but it was above 5%!!! So now I have to switch to fresh plasma infusions which means taking a loooong time sitting in a hospital or hemophilia center instead of doing my own at home.

I have vonWillebrand's Disease (vWD) which is like hemophilia but instead of one factor being missing I have two: factor VIII and factor vW, both of which are essential to clotting. There's three types of vWD and type III is the most severe. Mine's been way out of control this year.

I've been feeling like absolute junk since the beginning of the summer because I kept having internal bleeding in my knee, and then a couple of weeks ago I slipped in the kitchen and have a huge deep bruise on my upper back that hasn't gone away. I mean, spontaneous bleeding is really normal for me (usually nose bleeds and only minor joint bleeding) but this summer has been terrible.

So next week I'm starting immunosupressants which will make my inhibitors null and I can get back to my treatment being effective, however I'll be prone to infection and other nasty side effects of immunosupressants, the most dangerous of which is increased risk of infection and I'm not going to Uni until I'm off the drugs because it's very dangerous to be in a community environment while taking them.

And my doctor is sooooo reassuring, he told me this could last for a few weeks, or months, or continue forever. My hematologist isn't quite the "caring" kind of doctor, he's just blunt to the point depression.

I'm so sick of making decisions that are this important... I've deffered Uni until next year and now I'm considering an clinical trial for gene therapy. I'm feeling really confused right now, and increadibly alone because I don't want to ask my family about it, they wouldn't understand. I just feel like breaking down and doing nothing because I'm really, really tired of all this.

 

[tsukiyomi]

Eeek, that sounds like such a load to handle. :: I hope it gets easier.

 

[Lissa]

I'm really sorry to hear you're having such a rough time. I hope it's only a few weeks you have to wait until you can come off the drugs. It's frustrating to have to put Uni off, I know.

 

[frocher]

Hopefully the least invasive therapy will work. Sorry you had to put off school for a year. I hope you feel better soon.

 

[MACATTAK]

I'm sorry to hear about this. It is a lot to deal with, especially since you are so young. You should be worried about school, grades, lot of other things. We are all here for you whenever you need to talk or vent. I hope that things get better for you.

 

[aliciaz727]

wow you are a really brave person. despite so much pressure and stress in your life, you have the courage to fight your disease. I know you are saying that you are tired of everything you have to do, but I admire you for taking the time to learn about vWD's symptoms, pathophysiology and treatments. A lot of patients are in denial of their diseases or spiral into clinical depression. Continue to be the strong person you are now, because with all of the advancement in technology, therapy and medications in the last 10 year, i am positive that there will be a more specific, more effective treatment for you in the near future. I'm sure your spirit will also influence and strengthen others who are fighting the same disease. So thanks for being awesome!

 

[Dark_Phoenix]

I really, really hate fresh frozen plasma transfusions... I had one today and my skin reeeeally itches, and I have a fever. But like super itchy everywhere. It took way too long, I think three or four hours maybe? I can't remember. My driver stayed in the room with me (my parents and the rest of my family are out of town) so I wasn't totally alone at least.

Alicia: I have to deal with vWD because I've had it since birth (it's genetic). There's not much I can do other than "roll with the punches" or whatever. There's very, very few options other than prophylaxis. Actually, none that I know of besides what I'm doing now in case inhibitors occur.

I'm not optimistic whatsoever about "advances" in treatment or a "cure" because they can't completely replace a factor that my body can't make. Never. Ever. And while I appreciate and respect what you have to say, I'm really, super, uber negative about "hope" for vWD... there is none.

 

[lipstickandhate]

Im so sorry to hear this. You are obviously a very strong person and I sincerely hope you can find some comfort and control over this difficult situation. I definitely understand your cynicism about "advances"- I am experiencing something similar with my mom's cancer right now.

Please feel free to PM me if you want to talk. My thoughts are with you.

 

[almmaaa]

I'm sorry that you have to go thru all this. I am sick too I have a heart and lung condition and I have my good and bad days and somethines I think will I ever get to use all of my makeup that has been sooo expensive and I STILL want to buy all those collections coming up!!!! I will pray for you please dont give up. I know I'm not in your shoes but I kinda know what your feeling like right now. Best wishes.

 

[mjalomo]

Wow. You sound like you are going through a really hard time. It must be hard to have this illness constantly on your mind. When I get too stressed out, I give myself "permission" to take a couple of hours off of worrying and indulge in something I can enjoy. Problems will always be right there waiting when we get back, so we can leave them behind for a bit. Please make sure you let yourself enjoy the good moments (even though they may seem so far apart some days). Please know I am wishing for your health to improve.

 

[SparklingWaves]

First, I want to say that you are not your disease. There is so much more to you than just these procedures. Many times with serious diseases, we start to define ourselves by the disease. We forget all the other things we are. The procedures are painful, scary, and make us sick. I hear you are in a very difficult place.

I have learned with my own personal battle. That the good times are just seeing my dog run or a thundercloud. I use to think that a utopia awaited me if only I were well. I can experience great things even in difficult times. A good dream, the colors of the sky, a good meal are all part of getting through these difficult times. I dress up too when I am down. Even if I am not going any where too. Looking at a bee on a flower outside my window makes me smile. Don't beat yourself up. This is where you are right now. Feelings pass like waves crushing against a mountain. Make a list of what you can do while you are on immunosuppressants. I will be thinking of you. Kind thoughts sent your way. ----X------X----- Sending a rope your way to hang on and hang in there.

 

[giz2000]

Hugs to you, sweetie....

 

[MAC_Whore]

I'm sorry you are having to shoulder this burden. That is quite a heavy load. I don't think most of us could even imagine. I am glad to hear that you have found a supportive doc. Is there perhaps a chance to change to a different hematologist? One that could be realistic, but have a bit better bedside manner?

As clumbsy as I can be, I would be in a bad way if I were in your shoes. I injure/bruise myself quite a bit. I imagine the thought you would have to put into every action must be quite taxing. Do you see a counselor to discuss the stress?

Try not to let the stress of deferring uni get to you. I know you want to get on with it and enjoy the experience, but the reality is that you are on top of the priority list. You are doing the right thing by working to address your health issues. When you are feeling better, you will be more able to succeed at uni.

I wish I knew what to say to make this better. I feel so inept at discussing things like this sometimes. I just wish my words could make it better. Hang in there. PM me if you need to chat.

 

[Dark_Phoenix]

Sooooo, after a week-ish I'm feeling way worse than before. I haven't slept more than five hours a night this week and I'm really hungry all the time now. But the bruise on my face has gone away almost completely and same for the one on my back. So they still can't detect a vW factor but my factor VIII is up to 1.6%. So I started another version of recombiant factors Friday to help bring both factors up.

A councellor sat with me for almost three hours yesterday during my infusion. She kept telling about being happy, and cheerful... ARGH!!! I usually just watch really violent movies on my Zen and read gaming magazines but noooo, she actually had the nerve to take them away from me because they were "negative". I don't want to talk to some stranger, like if my family was here that's cool and all. But she just wouldn't stop talking the entire session. She kept going on about how I have the rest of my life to be happy. Ugh... just leave me alone, I'm not depressed but just tired and pissed off right now.

MAC_Whore: I don't see a councellor, but I go to support meetings during the week for people with blood and heart disorders.

I'm keeping this doctor. He was reccomended to me by my old doctor in Manama, and I trust him alot. My current doctor isn't the best with emotion but I hope whatever he's reccomending for treatment works.

 

[CantAffordMAC]

i'm sorry to hear the pain you're going through. I hope everything gets better for you soon

 

[nunu]

hugs sweety, hope you feel better soon