Update: Somehow It's My Fault

[slightlybroken]

Sorry about the negativity but I'm not in a very good mood right now nor have I been all week. I started out the week going to my Internist. We had to discuss whether or not to keep me on Coumadin or not. I've been on the blood thinners for 8 months now so I'm soo ready to go off. I'll admit that I've slacked off on getting my weekly blood draws but that's because I've not been therapeutic( within good levels) for no more than 2 weeks at a time. My blood has a tendency of going too thick. After going too thick, they have to bring out the big guns by putting me on the maximum mg dose that Coumadin is sold in, but then they have to watch me carefully because my levels go too high (my blood gets too thin) and as I stated above this is how it's been for 8 months.

When I went in, she seemed aggravated about why my levels aren't staying therapeutic. Heck..I'm the one that's aggravated..I have to get the blood draws and deal with the consequences of when it gets too thin or thick. Then I guess it was time to play the blame game. She started to questioning me like I'm doing something wrong in taking my medication. She started to ask me.."Are you skipping doses? Are you watching your vitamin K intake? Are you going by the education material we gave you in the hospital? Are you taking a multi-vitamin? Did we go over all this with you in the hospital? How are you making your doses? BLAH BLAH BLAH BLAH!"

I politely answered her questioned evened though I was very offended that she was literally treating me like I was stupid and implied I would put my life at risk. I think I have this down after 8 months. I reminded her for the 50th million time that both of my parents had trouble on Coumadin. Neither one of my parents was therapeutic on Coumadin. Their levels were either too thin or too thick but yet again....it must be something I'm doing nothing to do with hereditary elements.

I was told I also came up positive for a Viper Venom Test. This test is when they mix your blood with the venom of a viper and see how long it takes to coagulates(clot). This test is the opposite of what you would think would happen because if you have thick blood it will take longer to clot. The longer it takes means a positive result. Mine was positive which is not good because it points to a clotting problem...But I guess I did something wrong here too. It's still my fault. Did she even consider this test before questioning me like she did? (She also said that some people who come up positive for this test have Lupus...but I was negative....I guess that's my fault too..they got me. I'm just not the norm. Sue me!).

So the plan of action (besides blaming me for my levels)....I had a repeat doppler study on the legs to see if any new blood clots exists. It went well. He said that I do have some small chronic pieces left...but those are more or less scarred over and hard and will never break free. If everything looks good according to them, I can go off the Coumadin for a month. Then I will have a complete blood study (factor V etc...). If all is well with that I will be done with the blood thinners for good but I think, just to be safe I will take an aspirin a day. If all is not well, I'll have to be on blood thinners for the rest of my life :(

Hopefully it will turn out for the better because I don't like getting blamed for things out of my control!!!

[Lulu54]

SB- this must have been the week for doctors - my GI flubbed it too by telling me I had anxiety causing my chest pains - you can read my journal for my rant if you want details.  He just was grasping for an answer for anything since we had exhausted the GI tests.  Yes, I was angry too but he planted that seed of doubt in me. It only takes a little seed to really destroy the confidence in our mission so stay strong.

Lu

[slightlybroken]

Lulu- yeah I thought I had a better relationship with her too. I guess she freaked out when she couldn't  figure it out so she figured I had to be doing something wrong. To me, she was just grasping at straws...but it was still offensive. At least I still have my neuro (even though she doesn't know what I have...but at least she cares)..and my wonderful GP so I haven't lost complete faith in the medical community. I had never heard of that test before either...It's actually referred to the Diluted Russel's Viper Venom Test. It's pretty sensitive from what I've read and can be used with other coagulant panels.

Doni- There is other anti-coagulant they could put me on, but only as a last resort. The other options both have to be injected.. She said that if I could not be regulated on Coumadin, that we might have to cross that bridge and I'll have to go on something, like Lovenox. I was on it once and it wasn't bad. You have to give yourself shots in the belly..but it is very, very, VERY expensive. 10 shots cost $650. OUCH!!! It's a pain in belly but also in the wallet. I couldn't imagine paying for a 30 day supply.

Wouldn't it be nice if your doctors did what they are suppose to do...so you could sit back and just be the patent? Sorry your having a rough time.

[doni54]

Hi,

I'm sorry you had to be put through that, and know how frustrating it is to be talked to that was by a dr.

I've been in your same mood all week dealing with my neuro office trying to get them to set up the tests they supposedly want!!  I think dealing with the medical community is enough to keep all of us in a c r a p p y mood.....hahaha

Hope they get this situation fixed soon and find a med that you can take for your blood problem.  Isn't there something besides Coumadin?

Take care,
doni

[Lulu54]

Dear SB,
I am dumbfounded by your doctor's attitude - I thought you had a good relationship going with her.  The only thing I can say is I am so sorry that this has happened to you.  You know you're not well, so don't let them off the hook by blaming you for your illness.  

My best, Lulu

PS I learned something from your post - I was not familiar with the viper venom test and am going to read more.