Thursday, February 23, 2006
Yesterday, though I worked about 9 1/2 hours, I still realized that my hemoglobin was at one of its lowest levels ever. I knew it was below 7.5 from the day before. My wife asked me later whether having an oxygen tank would have helped. Possibly, but there are a number of factors involved and in my case, the low red blood cell count and low hemoglobin level is the driving factor. I am still affected by the blood clots in my lungs that reduce the blood flow. When I first experienced breathing problems back in November 2004, my local doctor thought it might be asthma, which would have affected the airflow. My hemoglobin was higher (11) at the time and oxygen helped overcome the reduced blood flow. They ruled out the asthma factor once the blood clots were discovered.
Another big factor is the level of oxygen in the air, typically about 21 percent. But that is not a pure number since it is affected by other air gases such as nitrogen and carbon dioxide and the humidity. For example, by the end of the church service last Sunday, I was short of breath and eager to get outside for some good air. (It may not be the sermon that puts the congregation to sleep! Just kidding, Pastor, but some more oxygen would help.) Also, this morning when taking a shower, I had problems breathing because of the humidity of the air. Check out the Occupational Hazards web site article, paragraph on the Respiratory System, for more details.
Tuesday, February 21, 2006
Yes, that's not a misprint. The ornery Hemogoblin has returned. My
blood test this morning showed that my hemoglobin level is down to
7.5 g/dL. It was 8.8 a week ago. I suspected as much today but
thought the same last week and was wrong. My platelets are also up
some from 338 to 397, but my white cells are down a bit from 17.2 to
15. Anyway, I am now scheduled for a transfusion on Thursday
afternoon. This should give the blood bank adequate time to find
blood for me. Last time, they could not assure 24 hrs turn-around so
we had delayed for 34 hours. Then, I just stayed home in between. I
have a full day of meetings tomorrow and then more on Thursday
morning, depending on my strength to even get to work. By Friday, I
should be refilled to attend a scheduled offsite seminar.
More on the good news. I reported Friday that my brother was a bone
marrow match, but then had more questions about the details. I
checked back with the BMT clinic yesterday and found out that he
actually matches 8 of the HLA factors. Typically, it is considered a
match with the main 6 factors that we inherit from our parents. The
Dr even feels the match might be better yet as they look at an
additional 4 factors. This all plays importantly into how my body
reacts to the donor blood stem cells after the transplant. I am sure
to learn more about this since the prednisone does not seem to be
helping the hemoglobin.
Sunday, February 19, 2006
While I didn't sleep real well last night and woke up last at 8:30
am, I was greeted by the sun shining brightly through the bedroom
window. It reminded me of the many times that my father had said to
me "The sun is always shining". "It is just that sometimes the
clouds get in the way". The weather here has been very cold with
morning temperatures of about 13 degrees below zero yesterday. But
then the thermometer outside my bedroom window is on the south side
of the house in the sunshine. As the sun came up yesterday, I
noticed the temperature rose rapidly as the sun struck the
thermometer. I have also noticed how the interior of my car will be
toasty warm in the winter even though the air temperature outside is
freezing. It is the same with God's son. He is always there ready
to support and sustain us through the Holy Spirit. It is just
sometimes our other troubles get in the way.
As I started writing this morning, I was watching the "Hour of Power"
which I have recorded on my computer earlier in the morning. Robert
Schuller, Jr., was preaching about David and Goliath. In his final
wrap-up of the sermon, he said "Remember that it is not how we die,
because every single one of us will die. It is how we live that
counts and it is what happens in us that is far more important than
what happens to us. God has given us the will and power to overcome
any Goliath that we face in our life today. You can do it with God."
Let the son shine in your life!
Friday, February 17, 2006
Tuesday, February 14, 2006
I have been sleeping pretty well at night over the past week, but noticed I was somewhat tired at work on Friday and over the weekend. I also noticed that I had less endurance before getting short of breath. Last night I got about six hours sleep before getting up about 6 am. I worked about an hour at home before going into work about 8:15 am. When I got to work, I called the triage center and arranged for a blood test around 10 am. My hemoglobin level was at 8.8, essentially unchanged over the past two weeks. White cell count was up a little to 17,200. I felt encouraged after talking briefly with Dr who reduced Prednisone to 40mg per day. I went back to work and then came home early to rest.
Seems like the effect of the Prednisone interferes with my sense of hemoglobin level. I am scheduled for the next blood test in one week.
Saturday, February 11, 2006
I believe there is a purpose in all of this and that I have been uniquely prepared for this purpose. This blog is a continuation of that purpose which I first recognized over 20 years ago. Earlier chapters of “My Story” are documented in a web site named “Story2tell”. Follow the link in the right column to read more.
In summary, the problems with my body, blood and breath are infinitely overcome by the body and blood shed for me by Jesus Christ and the breath and power given to me through the Holy Spirit. I pray that through this blog, this power and strength will be shown to you and that through your prayers, God’s power can be directed back to me.
Please come back and comment if you wish. Your experienced feedback on health or faith will be appreciated.
Friday, February 10, 2006
The second day, I experienced severe pains in my legs and suspected blood clots. Actually, some of the pain was like a sharp knife stuck right into my thighbone. I had ultrasound on my legs, but found no clots. The prednisone was then reduced to one dose of 60 mg and I have only experienced one minor episode of pain since and that was handled with some Tylenol.
Good news is that my Hb is back up to 9.0 and has actually been steady for the last two weeks. Platelets are also down to 333 and my Factor II is right on target at 20%. White cell count though is up to 13.2. I feel great and even worked extra hours this week.
Two weeks later, I was back in for another blood transfusion when my Hb was 7.8. This time, somewhat due to confusion between the clinic and blood bank, I did not get blood for 34 hours and spent a day resting at home in between. Due to this change in transfusion dependence, I went through an orientation with the U of MN BMT Center and had my bone marrow typed. Also received instructions to get my two sisters and brother tested as well.
Anyway after the blood transfusions in September, I also had over 3 months being transfusion free. During this time, my reticulocytes increased from 4% to over 12% indicating the Procrit was working. My Hb actually increased to almost 10 though my platelets crept up to 529. Unfortunately, the canker sores came back in December.
I also switched hematologists since my original one moved out east. The new Dr had me checked out completely by a cardiologist since the Anagrelide is known to cause heart problems as a side effect. My heart checked out fine.
Thursday, February 09, 2006
Whereas the blood was matched previously in a few hours, it took 8 hours to match and the transfusion had to be continued the following day. Since the last transfusion, the blood bank reported that my blood type had changed from A+ to A- and that I now had antigens D & E as well. Later the blood bank reported antigen C as well.
Wednesday, February 08, 2006
Sunday, February 05, 2006
That evening in the hospital, I was given a complete torso CT scan plus blood tests. The CT scan was difficult because I could not hold my breath long enough. Initial feedback was a spot on my lung, which later was determined from a second CT scan to be a blood clot (pulmonary embolism). The lump was just an ingrown hair (pseudofolliculitis), which was lanced and cleared up quickly. I went through EKGs, echocardiograms, ultrasound on legs and many blood tests. Blood tests finally discovered a lupus anticoagulant inhibitor and diagnosis of antiphospholipid syndrome (APS), also known as Hughes Syndrome. I was treated with heparin in the hospital from the first day and went home on the November 19th with a Lovenox heparin injection and a Coumadin blood thinner prescription. I also had oxygen at home for couple of weeks, but started work half time on December 1 and full-time on December 13th. My hemoglobin level was about 10.5 and platelets about 600 during this time.
Saturday, February 04, 2006
During all this period, I noticed that I was getting breathless, even after minor exertion such as climbing a flight of stairs. In October while raking leaves, I noticed being more tired and then that my right knee really hurt afterwards. I have had arthritis problems for many years and had arthroscopic surgery on my left knee twice, latest in 2002. My orthopedist recommended knee replacement surgery, which was scheduled for November 10.