Thursday, February 23, 2006

Blood & Oxygen

Well, I had a blood transfusion today and feel somewhat better. When I got to the hospital at 11:30 am, they said they were not expecting me until tomorrow, but they did have the blood and worked me into their schedule. Another mix-up between the clinic on the first floor and the transfusion unit on the third floor, complicated by the blood bank being somewhere else. Seems like 48 hours should be plenty of time to get everything together. They started the transfusion about 1pm and I was home by 5:30 pm.

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

Hemogoblin returns

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

Son Shine

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

Bone marrow match made!

I got great news today from the U of MN BMT clinic. They got my brother's sample in from Missouri and it is a match! I was not even expecting results this week so had not thought about it. I have been feeling pretty good the last three days, working over 9 hours per day and making up the time I was out on Tuesday. A BMT is still not a certainity, but it is great to have the match and option if I need it. Praise God!

Tuesday, February 14, 2006

No transfusion needed

When I got up this morning, I thought I needed another blood transfusion. I have said in the past that I can tell when I do and have been right the last five times. Today was different.

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

Body, Blood & Breath

Over the past week, I have created this blog and recollected my health experiences over the past couple of years. I have documented the facts as best that I know them, but with little emotion. Looking back, it may seem depressing to you, as it has been to me a few times. Why has this happened to me? What is in store for me? Why do bad things happen to good people?

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

Bone marrow match results

I learned yesterday that neither of my two sisters’ bone marrow matches mine. Also, my brother’s blood sample was not tested since his clinic forgot to label the vial that they sent FedEx from Missouri. I thought my best bet was with my younger sister, since my brother is 68 years old. It is important that he is in good health and I await the results, probably in about ten days.

Prednisone – good and bad

Since my BMB still showed 95% hypercellular activity and my reticulocytes were over 10%, my hematologist decided it was time to try another tack and prescribed prednisone. The thought is that my autoimmune system is killing off my red blood cells and prednisone would test the theory. I started with three 40 mg doses per day and have felt great at first. I was all fired up the next day, but had problems getting to sleep.

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.

Not so good new year

I started out the 2006 New Year with a hemoglobin level of 8.6, platelet up to 529, Factor II down to 14% and ferritin and blood pressure up as well. Within a week after feeling weaker, my Hb was down to 7.2 and I was admitted to the hospital for CT scan, another bone marrow biopsy and two more units of blood. This was my first transfusion in over 3 1/2 months and it took the blood bank 18 hours to match my blood type and acquired antigens. The CT scan showed no more clots and the BMB essentially was the same as last time in May 2004. Good news, bad news.

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.

Canker sores and heart OK

As I mentioned before, I had experienced canker sores in my mouth since May 2004. Shortly after I started on Procrit, I also read about a link between dry mouth, SLS based toothpaste and canker sores. I switched to Biotene toothpaste and my canker sores cleared up. Maybe this was also connected to the Procrit 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

Anagrelide, Blood changed

After switching to the AG, I experienced headaches, pulse pounding and even vision pulsing. The AG dose was reduced to just one .5mg per day and became tolerable. Unfortunately, the effects of the HU must have hung on while the Procrit had not kicked in. My Hb dropped further to 6.4 and my platelets reached a low of 331. I required 3 units of blood this time, less than two weeks after the last transfusion of 2 units.

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.

Hydroxyurea effects

Over the next two months, the HU did reduce my platelet count from a high of 719 to 440. Unfortunately, it also affected my RBC and Hb, requiring another 2 unit transfusion on August 18th. Dr then prescribed Procrit (20,000 units once per week) to counter the HU and stimulate RBC generation. By Sept 7th, my Hb had dropped to a new low of 7.0. I got another 2 units of blood and was switched from the HU to Anagrelide (.5 mg twice a day).

Travel and clotting

On July 4th, I flew out to Boston and helped my daughter drive a Honda Civic with two cats back to MN. While we took three days, there were periods when I must have been too stationary, probably during a three-hour stretch through Chicago area in rush hour traffic. The day after I sensed increased shortness of breath. I went in for a CT scan and routine blood test. My Hb was 8.8 and my platelets had increased to a high of 690. Dr prescribed Hydroxyurea, 500mg per day, to reduce the platelets. The CT scan showed another blood clot in my left lung and I was admitted to the U hospital. Clot probably developed in my leg at moved up to the lung. My Hb had dropped to 7.7 after just 2 days on HU so I received another 2 units of blood. While in the hospital for 2 days, I also had an echocardiogram and ultrasound on my abdomen. My spleen, liver, kidneys and gallbladder all checked out OK. A few days later my INR had increased from an average of 3 to 6.7 and we started to measure Factor II, which was 15%. My coumadin prescription was increased twice a week to 7.5 mg per day with 5 mg for other 5 days. Target Factor II is now 20%.

First transfusion

As a follow-up to my Mayo visit, I had my Hb checked at my local clinic and got my vaccination for tetanus and pneumovox. Hb was 9.2 and white cell count was 5300. The next day I got an infection in my upper right arm, a fever of 102 degrees and WC of 33,500. I was admitted to the hospital and treated with Zosyn IV antibiotics. My Hb went from 8.6 to 7.2 in one day at which point I had my first 2 units of blood transfused. My Hb only increased to 7.6 so the next day I received another 2 units of blood. I was discharged after 3 days in the hospital with an Hb of 9.5. Three days later my Hb was 11.5 when checked at the U clinic, but then down to 9.7 two weeks later.

Wednesday, February 08, 2006

Mayo Consultation

Being from Minnesota and with strong encouragement from my family, I arranged for a consultation with Mayo Clinic in Rochester. I was there twice in May of 2004; first to get the general blood, lung and heart tests. My hemoglobin (Hb) level was down to 8.8 on the first visit and 8.4 two weeks later. A lung function test indicated operation at only 53% due to both clots and anemia. An echocardiogram showed no evidence of pulmonary hypertension. I had a bone marrow biopsy and CT scan that confirmed the previous U of MN tests and my MPD unclassified diagnosis. The Mayo hematologist advised me to have my siblings tested for possible BMT. He also advised me to get my Hb tested the next week at my local clinic and also get my vaccinations updated. After comparing BMT programs between Mayo and the U of MN, I decided to stick with the U for further monitoring of my condition. Any BMT match was delayed in the meantime.

Sunday, February 05, 2006

Follow-up and referral

After several follow-up appointments while monitoring my Coumadin and INR levels, my hemoglobin was dropping further towards 10, but my platelet count improved to below 500. I was referred to a faculty hematologist at the University of Minnesota with appointment on January 18th. Another CT scan showed additional pulmonary embolism so I spent three days in the Fairview University hospital for additional heparin treatment and tests. I was switched to Lovenox heparin blood thinner and scheduled for a bone marrow biopsy (BMB) and colonoscopy in mid-February. During this time, an abscess was discovered on a front tooth and an old root canal was redone. During these days as the Lovenox was discontinued temporarily, I experienced another blood clot found by CT scan on February 28th. The results of the BMB showed 95% hypercellular activity in the bone marrow, which was producing maximum red blood cells, a sign of myeloproliferative disease (MPD). Problem was that these blood cells did not survive in the blood stream resulting in the anemia. It was a double-whammy with my oxygen intake affected by both the low hemoglobin (9 to 10) in my blood and the reduced blood flow through my lungs due to the multiple clots.

The mystery begins

In my pre-op physical on November 5, my hemoglobin was first noticed as low and my breathing had become more labored. My doctor prescribed an Advair inhaler, thinking maybe I was getting asthma. During the week, I also developed lump in my lower abdomen. On Friday, November 12, the lump coupled with even more labored breathing resulted in my admittance to the hospital for tests.

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

The Beginning

In April of 2004, I had no idea what was ahead for me relative to my health. I had a routine physical at my local clinic with no problems. In May, I noticed that I had bad canker sores that seemed to replace the previous ones as they healed. In August, I had phlebitis, first undiagnosed in my left leg and then within a week more if my right leg. The second case was diagnosed as superficial phlebitis and treated with heating pad.

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.