Friday, October 21, 2016

INR down again

Well, it happened again. I had a blood test yesterday morning. I got the results from Life Labs in the afternoon. My INR was below 2. It was 1.8.  However, despite the fact that it was dangerous and my doctor had promised that they would call, nobody phoned to tell me how much warfarin to take. 

I found this very stressful - but by 6 pm  it was time to take my warfarin. I decided to do what I was told to do last time my INR was 1.8. That was - take 8 mg yesterday and 6 mg for the next 3 days. I did that and felt moderately stressed. Nobody ever called.

This morning I called to leave a message with my doctor about what I had done. The receptionist said that the staff went home without phoning me because he did not give them his directions until 5:30 because he had patients.  I really think this is inexcusable. I had told my Xolair nurse about this the first time it happened and she said it just isn't done. Staff stay until everyone is phoned. I think it is unlikely that it is just my doctor's fault. I assume there is some sort of battle going on between the staff and the doctors at the clinic.

The receptionist said the amount of warfarin he had prescribed was 6.5 for the next 4 days. I am sure the amount I took was OK but I never got confirmation. I wonder what I should do about this. I am surely not the only patient this is happening to.

Thursday, October 13, 2016

Checking medications

Darn it - today I felt quite dizzy. A moment of vertigo when I first got out of bed and then a modest amount of dizziness all morning. I blamed it on my glasses. I stopped wearing my contacts and wore my glasses for the last few days because I should be able to see better with them and I need to get back to driving. However, probably because of my cataracts, but the vision in my right eye has become quite poor even with my glasses.A couple of years ago when I couldn't wear my glasses and had an ear infection I got really dizzy.  The audiologist said i could fight it. I did and I got over it. When I got home from our morning appointments, I put on my contacts again.

Mike suggested checking my medication to see if any of them cause dizziness. Well several do. BUT Xolair is also associated with blood clots. I just had my Xolair injection yesterday. What the heck does this mean? What the heck can I do. I thought I was getting away from asthma story - but now I'm not sure!

Wednesday, October 12, 2016

New shoes

So - the original symptom that led to me being diagnosed with DVT was my swollen feet. They have gone down a bit since taking warfarin - but not completely. I have tried to keep up doing my 10,000 steps everyday. going up hill is OK as long as I open up the top laces so I don't get pressure on my feet and ankles. Going down hill can hurt when my fat toes bump into the front of my shoes. My left big toe was pretty sore. I have made an appointment with a podiatrist but cannot see him until the end of November.

So yesterday I bought 2 new pairs of shoes with extra large toe compartments. They are New Balance and the toe compartment is higher and wider. One pair is for indoors (very stubby) and the other for outdoors (look pretty nice).  I hope they will help. Unfortunately the outdoor pair - the pair I wore for my walk yesterday -  may not be that useful. When I took off the other pair at bedtime, I had a red rub mark on my right big toe which I think I got on my walk. This was disheartening. A blister bandage may solve my problem.

Today it is pretty damp outside. We have had one storm but 2 more are on their way so I must go for a walk soon.

Finally INR is in therapeutic range

Last Friday the whole situation with my INR levels came to a head. I got 2 different messages from my doctor's office on the same day about my INR level and how much warfarin to take. Fortunately I had called the nurse line to try to find out how serious my low INRs were. The nurse had  gently advised me to see my doctor. I was able to see him on Friday and he apologized for not getting back to me on Tuesday and for the 2 conflicting messages on Friday.

The target zone for someone like me is an INR between 2 and 3 - which sounds simple enough.  However, the INR scale is "logarithmic" which means that an INR of 1.5 is a lot lower than you would think. It is something like about 10% of 2.0 - not 75% so the lack of communication could have been serious - but luckily it wasn't. Interestinglyr, a really high INR - like 6 or 7 - does not mean you will bleed to death. You just have to stop taking warfarin for a short time. There is an antidote if things get really out of hand.

So I took 8 mg on Friday and 6 mg each day for the next 3 days. Yesterday I had a reading of 2.7 which seemed good. The nurse called to say take 6 mg for3 days. My next blood test is Friday. Figuring out how much warfarin to take is not straightforward because your INR is affected by how much vitamin K you ingest - not to mention stress. However, the plan is that eventually I will become stable and I will be able to determine myself what a blood test means and how much warfarin to take.

Thursday, October 6, 2016

Worried Day Yesterday

In all honesty nothing bad happened yesterday - but there was a lot of stress and worry and I felt like a basket case.

The first thing was that since no one from my GP's office had called the afternoon before we assumed that my INR was within the correct range of 2-3. We decided to follow my GP's advice and get my lab report account working. It took awhile because I was in the system as both Penny and Penelope- so had 2 accounts. Eventually I got this sorted out and to my horror found my INR was1.5. This was pretty low. I called my GP's nurse and she said my GP was away. Another doctor was supposed to call me.  She upped the need for him to call to :urgent"- but then suggested I make an appointment with another doctor - which I did for 2:30. I figured I probably wouldn't make the NAPA call - already once postponed.

I decided I could speed things along by having another blood test done yesterday - in case my INT wss still froppong. I went to the jsb around mid-day. However since the results from such a late test  would not be available until 6 or 7 that evening it actually wasn't much use. Though I thought it might show a trend. When we checked it this morning it was 1.6 - despite eating kale and only taking 5 MG of warfarin the.night before.

I decided to check out the vitamin k levels of various foods. A person on warfsrin should try to keep the level of k they consume fairly consistent.   k is the vitamin thst makes your blood coagulate and warfarin inhibits the effects of k. The levels in each food are not at all what you would expect. Kale chard and spinach are 10 times higher than broccoli. Green tea only has k in the leaves - not the drink. Lettuce has very little. This really worried me. I had thought I would have lettuce or green tea on the days I didn't have kale, chard or spinach. 

I decided I would have at least a bit of the big three everyday at least until someone tells me not to. BUT WHO IS THIS GOING TO BE? I know sporanox anf warfarin interact with each other but whst does thst mean? My GP is supposed to be managing my anticoagulants - will he do anything?

The clinic called  that the doctor I was booked to see had gone home sick so I had to get another appointment with another doctor at a later time. The only one available was my least favourite at the clinic. When I finally saw her she was moderately pleasant  and understood my issue just fine. She prescribed some 1 mg warfarin, told me to take 6 mg that evening, and to get another blood test tomorrow. It turned out my regular GP is back tomorrow - that was a relief!

The NAPA call was postponed to the next day.

When I got home from the lab this morning there was a.message to call my GP 's nurse. My GP had a new prescription based on the INR of 1.6  - a useless number since the timing was wrong, I also already had the new prescription from the day before. I told I had screwed up getting the extra blood test but they hsd screwed up by not calling based on Tuesday based on the 1.5.

I begged her - please please please - call today based on this mornings test.

What I learned- insufficient knowledge snd poor communication can sure csuse a lot of unnecessary stress even if it does not have a direct impact on your health.

Tuesday, October 4, 2016

First Days without NRGH

Yesterday I went to see my GP. He prescribed 100 5 mg warfarin tablets and told me to get my blood tested today (Tuesday) and Friday. He promised he would let me know how much warfarin to take each time I got my blood tested. Sort of as a back-up, he suggested I get an email account at Life Labs so I can look up the results myself.

I already had an account - but it didn't seem active when I tried to use it yesterday, so I guess I set up another one. I don't see how that happened because I know I used my regular email. Last night - in the middle of the night -  I got really worried I wouldn't be able to get my blood tested - just one of those middle of the night worries. But this morning there was no problem - I didn't have to wait and I didn't even get a bruise. But now it is 4:20 and I haven't heard from Dr Bland or his nurse about the results. I checked Life Labs myself. At first it said I didn't have the right password and, once I got that fixed, it only had results from 2 years ago. What does that mean?

So now I am stressed again. I remember worrying about this in the past. I have made the decision that if I don't hear before supper I will just take one 5 mg tablet like the last few days. I likely will hear - but I feel so stressed. I had it in my mind that I would hear by 4:30.

The other news from my GP. Likely my DVT has nothing to do with sporanox or anything in particular. I just have  a predisposition and could "throw a clot anytime." I will likely need to take warfarin for the rest of my life. In other words my DVT probably has nothing to do with my asthma. Hopefully I will get stabilized soon so I don't have to worry about hearing the results - like I am now.

OK I'm going to put the chicken in the oven. Mike is home now so he will figure out what to do.

Sunday, October 2, 2016

Sunday - Now I'm OK

Today was my last day of being on the NRGH protocol for DVTs. Everything went smoothly. My blood was taken, my INR was 2.2, I had my last heparin injection.  Now I am safe from further clots and the one I have should be dissolving. I will see my GP tomorrow and he will take over monitoring - determining how much coumadin I need to take and how often I need my blood tested. I guess I am still a bit stressed because I still have headache but I am OK. It seems to me a lot of people are blood thinners - so it's not a big deal.

Unfortunately my peak flow has not improved since I got my new monitor - so I guess I have another factor besides fungus. I actually feel totally OK but my pf  numbers should be higher (450 not 400). Hopefully I will be able to see my asthma doc and respiratory therapist soon so he can start working on this.

I also hope someone will  figure out why I got this DVT.  I still think it is the combination of drugs I am taking - but this may be cutting edge research so it may take some time.

Good news - we are going to Elspeth's for Thanksgiving.  Boy I am pooped! Mike too!