On my way back

I have been off Warfarin for three days now. I began to notice a difference yesterday. This morning when I began my standing exercises the difference was amazing. I did 24 calf steps, 30 side-steps and 60 step ups without any problems. The weakness in my trunk muscles (stomach and back) was also gone. Just two days ago this was impossible. I went on to perform all of my other long-day exercises. I noticed that some exercises were still not perfect, but they were a lot easier and better.

Another difference I noticed yesterday was the heaviness I felt in my lungs was gone.

Observation: It wasn’t the flu that caused this extreme weakness.  I must be one of those 5% that cannot take Warfarin because it causes muscle weakness and fluid on the lungs.

In two more days I begin a new blood thinner. Two of the benefits of this new thinner are that I do not need INR blood tests and I can eat any food item (salads, broccoli, cranberries, etc.). I am really enjoying eating salads again. In the expansive potential side effects list is one that says, “Could cause muscle weakness.” So, I need to be observant and make certain this doesn’t happen again.

Nothing ever seems to be easy

It has been two months since I was diagnosed with a blood clot in my calf. Since then, the blood thinning process has not been without problems. When I read it could be difficult, I never thought it meant experiencing large swings and constant visits to the doctor for INR testing.

The first couple of weeks my blood would not thin (0.8 – 1.5). With new instructions (no broccoli and reduce the number of other items with vitamin K) and an increase in the medication, my blood finally thinned to 2.2. But, it worked too well and the next test showed 3.5. Okay, new instructions – reduce the medication and have a couple of salads. When we checked again, it was now too low (1.5 again). Okay, maintain the dosage, but stop eating all salads, do not drink green tea, and, stop taking my multi-vitamin and CoQ10. When we checked this Friday, I was in the zone again (2.3). The latest instructions are to keep doing what I am doing (and not doing) and come back in two weeks.

For a person that sees his doctor once a year for his annual physical, I have had eight visits so far in two months. Every time I step into the lobby, there are six-to-twelve people waiting. Some are coughing (oh-oh), some look in pain (probably nothing to worry about), and some look healthy (whew).

Okay, let’s review …

A.  The good news:

• I have not experienced any pain or swelling in the calf since week two.
• I am two months into a six month regiment.
• I increased my calf exercise routines.
• I don’t sit very long without getting up and moving around.
• I haven’t bitten my tongue recently.

B.  The bad news:

• My blood won’t stabilize within the recommended level.
• These doctor’s office visits for INR testing are getting old fast.
• I miss my daily luncheon salad and my green tea.
• I still have four more months left (at least I hope that is all).

C.  Lesson learned: Keep moving!

Bite your tongue!

Over the last couple of years I have started biting my tongue on occasion (about every 6-8 weeks). These bites are not like taking a nip out of the tip of your tongue. These bites are in the middle third of the tongue and when I bite into it there is a crunching sound and some excruciating pain. Most of the time I take a hunk of flesh out of the tongue and it bleeds a little.

When I checked with my neurologist about this problem, he said my jaw and tongue muscles are atrophying. My wife tells me I need to be more aware of my chewing habits. I did notice that many of these times I am chewing on a salad.

Since beginning to take Warfarin for my blood clot, my blood has thinned to a point where anything (a scratch or cut, for example) won’t stop bleeding unless pressure is applied. Well, when I bit my tongue last Wednesday, it would not stop bleeding. Pressure didn’t seem to help. Ice seemed to help a little. Finally, pressure with a tea bag finally worked. Two hours later, however, it broke open again. More ice, pressure and tea bags.

A week later the tongue is still swollen a little, but everything else seems back to normal. And, I am listening to my wife … like I always do. (Okay, my fingers are crossed)

Being someone who is normally pretty optimistic, very little gets me down for long. I seem to have a way of turning negative events into a learning experience and find something positive about it. But, this incident has me concerned. If it was a more serious wound, or internal bleeding (from a fall, for example, causing a serious sprain or broken bone), the situation might require immediate attention.

When I discussed this problem of biting my tongue with another KD’r about my age, he mentioned he is also having this problem. Now I am wondering if more people living with Kennedy’s Disease have this problem as their atrophy progresses. Please let me know if you are also experiencing this issue.

When is it too thin or not thin enough

Week 2 of 26

Today I finished my twice-a-day anti-clotting drug shots. I will not miss this morning and evening ritual and my wife won’t either. My stomach looks like a black and blue pin cushion. And, my left hand has pinholes on every finger. The pinholes will continue as they test me twice a week until I stabilize at the new desired anticoagulation level.

The Warfarin dosage is still being tweaked to find the right level … somewhere between 2.0 to 3.0. The 2-3 times a week blood test will help monitor where I am at and also let me know when it is time to increase or decrease the Warfarin level.

I feel I am getting to know the doctor’s office staff too well. My once a year visit has turned into five in two weeks and growing. This is a trend that is not conducive to my feeling of being a healthy and happy person.

I know it is hard to believe, but my daily exercise routine that has been so effective over the last couple of years has increased with the addition of several calf exercises. I have incorporated these exercises into my morning routine as well as performing these calf exercises every 2-3 hours. Exercise appears to help keep the calf muscles loose and the pain minimized.

I had never really considered blood clots before. A sister and brother had them, and my mother-in-law has them also. It is now another thing for me to consider as my mobility declines. I have already changed a few of my routines to ensure that I keep the blood flowing through my legs all day.

I now have adopted a new saying …

“Just keep moving”