Saturday, September 8, 2012

Headaches but working

I finally drove this last week to work. My wife has been taking me places instead but I figured I could drive this past week. Tuesday I didn't drive and got a ride home from a co-worker that lives nearby. I drove myself Wednesday and Thursday and had a work offsite that I carpooled to instead of driving. The offsite was at Jordanelle Reservoir and I didn't want to drive it. The same co-worker helped me by driving.

Thursday I had pain in my leg that is probably just old clot acting up or new clot. If it's new clot I want to know why my current medicine didn't prevent it. I called Dr. Woller to see what he thought about it. I exercised as well to help keep the blood flowing. I'm also still wearing the compression sock on my right leg.

I have had headaches over the past few days. It seems like my body is better in the morning and as I try to stay active. I did take a nap yesterday when I got home from the offsite. I will keep trying to remember to publish daily. I don't find that I remember or want to blog when I get home and don't feel well.

Monday, August 27, 2012

Monday 27, 2012

Today I went to work. I had some periods of sharp pain from what felt like extra blood flow - mostly from getting up, sitting down and any exertion. I was able to put in a pretty good day of work though and was glad to leave when I did. I helped a little around the house when I got home. I found that the pain subsides after a little bit when the blood feels like it's flowing more than normal. I feel like my head is just bursting with blood inside at times.

Anyway, I'll be trying to go to work again tomorrow. I'll be trying a new electronic stimulation gizmo that I don't know much about that delivers electrical impulses to the muscle to relax it.

Sunday, August 26, 2012

Saturday/Sunday August 25-26, 2012

Yesterday I was in bed most of the day. I did get up around 10:00 or so and had some breakfast and someone from our ward came over to give me what is called a "foot zoning". I stayed up for a bit but went back to bed around 5 or so. The headaches were fairly persistent all day but not too bad when I was up.

Today I tried to stay up all day. I think I did pretty well. I used some physical therapy to help relax some muscles and went to church as well. I still have some pain from the headaches but it wasn't as bad maybe. I sipped on ice water at night to get some hydration. I think the headache pain today was just mostly dull with some pain when I would sit down or lie down. Less pain than yesterday. I'm going to attempt to go to work tomorrow. I might make it. I will take a muscle relaxant tonight and maybe nothing else. I'll see if I wake up at 3 AM or if I can sleep a little longer. It wasn't very cool in the house last night which might have contributed to my discomfort.

Friday, August 24, 2012

August 23-24, 2012

The 23rd I went in for a CT scan of the brain and they had a little clearer look at the apparent clotting in the sigmoid sinus. It looked apparently to the radiologists interpreting the scan that I have some clotting there. Some of you asked if that could be causing my headaches but none of my doctors saw the correlation, but I'll ask them next time I talk with them. I spent most of the day in bed both today and yesterday. I find that I am in more pain when I crouch or sit down after walking around.

I went to see my PCP today but he's out until Wednesday so I talked with one of his physician assistants (PA) and we discussed putting me on another drug in addition to the muscle relaxants. I guess I'll take the drugs tonight and see if there is much change. My head basically throbs all the time and sometimes it lightens up. I don't feel like eating much and sometimes have some nausea. Anyway, that's today and yesterday summed up.

Wednesday, August 22, 2012

Seven most recent blood tests

Here is a list of the blood tests that were ordered by the thrombosis specialist:

Prothrombin 20210 G/A Mutation - Negative

Paroxysmal Nocturnal Hgb RBC - %0.000

Lupus Anticoagulant Panel - Negative

JAK2 gene - V617F Mutation, Qualitative - Not detected

Factor V Leiden - Negative

Cardiolipin Antibodies - *9

B2Glycoprotein I ABS, IgG/IgM - *0 IgG, *2 IgM

All tests came back either negative or showed that the problem wasn't present in my blood. Hopefully more tests can be run to rule out other things at my future appointment.

DVT Start to Present

After having a few questions about when things happened and how I feel each day since having a DVT on May 18, 2012, I'm starting this blog.

May 18th I came down with a DVT. Early in the morning at work, around 9 AM, my right leg started making it hard to walk. I had a limp and my right leg was in some pain, but not unbearable. I also had a cough and it didn't seem all that bad. I had been getting sick Wednesday night (16th) and on Thursday (17th) stayed home from work with what seemed like a sinus infection. Friday I felt well enough and went to work. Shortly after an early meeting my leg started acting up. I had a cough that was developing during the day as well.

I got home from work and did a search on the Internet for my symptoms and they suggested to see a doctor soon. So, I went to an Instacare clinic and got a blood test done to see if clotting was high in my blood and checking for a possible DVT. I got home from the Instacare and my mom was visiting and suggested that since my grandpa had phlebitis (DVT) that I should go and have it checked out at the ER. I went to the ER. They did an ultrasound of the leg to check for clotting and a CT scan of the chest to make sure that I didn't have any pulmonary embolism. The CT scan revealed I had pneumonia and the ultrasound showed that I had clotting from my mid-thigh down into my calf.

I was discharged from the hospital later that night. I was given a prescription for an injectable blood thinner called Lovenox and started on Warfarin (Coumadin). The next few days I spent in bed mostly. I went to see my primary care physician (PCP) on Monday and continued taking Lovenox for a few days and then stopped as the Warfarin was up to the correct INR (International Normalized Ratio). I checked back in with my PCP about once a week to see how the INR was doing. My second or third time back I had an INR of about 7.6. A therapeutic INR is 2-3 so this was a bit high. I was given a new dose and took that along with frequent tests to verify that the INR was coming down to a better level. I think it ended up being somewhere around 5 and then 4 or so over the next few tests.

As far as I can recall the INR went from around 3 to around 2 and dropped below 2 at about 1.7 for a few days when I had it readjusted to bring me back up, since 1.7 is low. It was 1.7 on June 26th if memory serves. I had an INR in the therapeutic range after that hovering around 2.8-2.2 over the next period.

As a family we celebrated July 4th with fireworks and fun and I was fairly mobile. Over the next few days I developed what seemed to be another, or progressing DVT. This was confirmed later in July with another ultrasound and new clotting had gone from mid-thigh up to my groin. An MRI was done of my pelvis area to see if veins were situated in a way that might contribute to me having this clotting. Nothing was found.

The week after July 4th I had a CT scan performed of the Brain to make sure that I was't bleeding because of headaches that had started and just weren't going away. The CT scan came back negative for bleeding.

I visited a neurologist to discuss options for my headaches. He thought it was probably related to my thrombosis and had an MRI Brain and MRA Brain scheduled to see if there was any clotting. He suggested and prescribed a Lupus clotting test and gave me a prescription for some hydrocodone (Lortab). My mom had concerns about me using this drug and developing a habit, so I stopped taking it. It seemed like it made the pain a little more bearable but I couldn't tell if it helped my headaches go away so I figured suffering was all I could do.

The MRI Brain Without Contrast and the MRA Brain without and with contrast came back clean except for a spot that might have a nonocclusive thrombus within the sigmoid sinus. The therapy for this would be blood anti-coagulants so even if there was something to be done, I was already doing it.

I was able to talk to Dr. Mark Kringlen, an interventional radiologist who is able to perform a procedure that can clean clots from a leg using a catheter injected into the vein and then deliver thrombolytics directly to the clot to break it up. This procedure was scheduled and the procedure attempted. However, my clotting was such that the veins were totally occluded in parts that made the catheter unable to get to the thrombis and so the procedure didn't work for my situation. An attempt was made from both behind my right knee and one to go up and over the femoral vein from the left groin going over what I think is called the iliac bridge.

After the failed procedure, I visited a new thrombosis specialist a couple days later and have changed medications to dalteparin (Fragmin). I have been on that drug for around 20 days. I have been having headaches for the last week and they are pretty painful. I feel pretty bad at times especially after exertion. I feel a constant pulsing that sometimes is lessened, but everything pulses for me. I feel pressure on my ears and behind or near my eyes. I can sometimes sleep but sometimes the pain is so great that I am wakened from sleep. I have talked to my PCP about the headaches and he prescribed somatriptan to take when a headache is coming on (although they seem constant so I don't know when to take it really). He also prescribed cyclobenzaprine to help with muscles that are really tense in my neck and shoulders. I think that might have helped me sleep through the night last night.

Tomorrow I'm scheduled for a CT scan to see if there is any bleeding on the brain and also to have a better look at the possible thrombus in the sigmoid sinus.

My goal is to post daily how the day went and my level of function. This should help keep a log of how things are progressing or getting better and possibly help future doctors in diagnoses.