Friday, June 30, 2006

Wild Wednesday

I was in for my Rituxan IV on Wednesday. It only took 4 hours, from 12 noon to 4 pm, since I had no reaction last week and they speeded it up. My blood test before the IV showed that my Hgb had dropped to 8.2, from 9.6 last week, so I also had 2 units of blood this morning. My white cells were 3.7 (just a little low) and platelets were 503 ( a little high and exactly the same as last week).

What made Wednesday wild was that both my mother and mother-in-law were in the hospital at the same time as I was. My mother-in-law was just coming home on Wed afternoon, but my mother was admitted after being taken to the emergency room on Tuesday night. She had a mini-stroke and lost a little control of her left hand. They discovered a blockage in her right carotid artery to her brain by using a CT scan. They did an angiogram on Wednesday afternoon and would have put a stent in, but discovered a large blood clot that was in danger of moving to the brain. Instead they gave her Plavix and heparin to reduce clotting and try to dissolve the clot. We discussed my blood clotting problems with the Doctor who did not think there was a connection.

My sister and I were visiting with her early Wednesday evening when she started to have difficulty speaking and yawned deeply. Her blood pressure dropped quickly and she passed out. This was shortly after 7 pm in the middle of a nursing shift change so she received plenty of quick attention. My other sister and older brother showed up just as this was happening. We thought that this was the big one and were prepared for her death. She was prepared as well and has mentioned frequently that she has had a good 88 years and is ready for heaven to join my father who died 2 1/2 years ago.

But God had a different plan. The drop in blood pressure was due to bleeding into her abdomen. Possibly the blood was too thin or the femoral artery was damaged during the angiogram when they ran a catheter from her groin up to her neck. Anyway, they gave her five units of blood and reversed the blood thinning drugs. By 11 pm when I left she was talking and moving fingers and toes. A CT scan showed that there was no stroke, but are concerned because of the possibility of more clotting. I saw her again at noon today after my blood transfusion and she is eating and talking fine. They are planning to try the stent again next week, but say she is a time bomb waiting to go off. God’s plan did allow my younger brother time to get here and visit with her some over the past two days. It also has allowed us more time to discuss what life care directives should be used in a situation like this.

Thursday, June 22, 2006

Rituxan & Purgatory

I had my first Rituxan IV treatment on Wednesday, starting early at about 8 am and finishing about 1 pm. They took it slower this first time and indicate it will speeded up next time. They started earlier than originally scheduled since they wanted more time to observe me, but observed me less than I normally get during a blood transfusion. The nurse took my blood pressure before starting, but that was all for the duration of the treatment. No temperature or any other follow-up. During a blood transfusion, my vitals are checked at least three times for each unit of blood. Actually, I was in a chemotherapy room with at least 12 patients and about 4 nurses. Observation was probably visual while asking me frequently if everything was OK. After the initial introduction of Rituxan, there is probably less risk of reaction than with blood from different people each time.

Before the IV, I also had my weekly blood test. My platelets were 503 and white cells were 4.4, both improvements since last week. My Hgb has dropped some more to 9.6, probably indicating another transfusion will be needed next week.

On a sad note, I attended the funeral of a co-worker that died of lung cancer last Sunday. He was 62 last Thursday, had worked for our company for 39 years and was taking early retirement at the end of this month. Over the past year, my office was close to his and we talked at least once a week, though his work time was very sparse since the first of the year. We often reminisced about the all the changes in computer technology over the years.

He had not been to work for three months and I had last called him at home almost two months ago. Thinking back, I wish I had been a better witness to him though I did direct him to this blog. He had a Catholic funeral mass this morning with very good attendance. Very little eulogy by the priest and an emphasis on baptism and communion as guarantee of eternal life. Made me remember childhood arguments with our Catholic neighbors about Purgatory though there was no mention of that at the funeral today. I am just thankful to be saved by the grace of God through Christ’s death and resurrection without needing to depend on others to speed my passage through the torment of purgatory.

Saturday, June 17, 2006

More Rituxan Info

In researching background materials relative to my upcoming Rituxan treatment, I came across a great web site, named CLL Topics, covering CLL (Chronic Lymphocytic Leukemia) but also has information about Stem Cell Transplants and Rituxan treatments. It also has warnings about the Procrit that I have been taking for the last ten months. Please note that a lot of this relates to patients with leukemia or tumors, neither of which I have. My white cell count was back down to 5.3 billion per liter last week where the normal range is 4 to 11.

My main problem now is AIHA (Auto-Immune Hemolytic Anemia) that is requiring my frequent blood transfusions. The article that brought me this web site included Rituxan treatment for AIHA, plus also describes previous treatments of prednisone and IgG that I have had. Easier reading than most of this stuff if you are interested.

My Rituxan treatment starts Wednesday at 7:30 am. It was originally scheduled at noon, but they wanted more time to observe me before letting me go home. I may be there all day.

Wednesday, June 14, 2006

Good week

It has been a good week after a little vacation at the lake cabin near Bemidji. Went up Saturday and came back on Monday, missing the traffic. Beautiful evenings with the full moon over the lake. We beat back the lawn and weeds with surprisingly no mosquitos or wood ticks to bother us. Though it was cold with a high of about 65 degrees, the water temperature was 70 and I took a quick dip to wash up on Monday morning.

My blood test yesterday was pretty good as well. My hgb was still up at 10.8 and my platelets had reduced to 643. White cells and Factor 2 were in normal ranges. I talked with the doctor today and will be scheduling the Rituxan IV treatments for 4 weeks starting next week. I have read a little about it, noting about a 40% success rate with a small study for anemia at Mayo Clinic. It has been used with 730,000 patients over 8 years, but a few have had fatal reactions during the first dose. I have a good history of no allergic reactions to medications yet, so it is worth a try. Your prayers are appreciated.

Wednesday, June 07, 2006


I saw my hematologist today and received a couple of surprises. First, my Hgb was 11.5, the highest that I have recorded. Unfortunately, my platelets were also the highest at 1050, up from 359 just last Friday. White cells and Factor 2 for clotting have remained unchanged. So I need to increase my anagrelide which I just reduced on Friday as well. It is very surprising that the platelets would increase so fast, but may be affected some by the Levaquin antibiotic that I am still taking for the pneumonia.

The doctor also said he has one more thing to try, Rituxan, which is normally used to treat non-Hodgkins Lymphoma. Seems like there has been some success for treatment of autoimmune hemolytic anemia (AIHA) as well. He is still waiting for more blood tests taken today before moving ahead, maybe next week. If Rituxan does not work, a BMT in the September timeframe is the next alternative. I am investigating further.

Friday, June 02, 2006

Last IgG

Since my last entry on Wed, I worked for 5 hrs on Thursday before getting tired. I came home for a nap and then spent a couple of hours cleaning maple spinner seeds out of the gutters and front lawn. I did not feel too bad though did not sleep very well last night. This morning I was up at 5:30am and the day hospital by 7:30am. I had both an IgG IV and two units of blood while getting in a couple of hours of work remote using my laptop. Would have done more, but did not have much to work on. Not much activity at work either on a Friday afternoon.

My blood analysis was all positive today. White cell count was down to 8100 from 26000 on Sunday. Hgb was surprisingly at 8.7 before the transfusion so should be 10.5 or more now. It was 8.4 on Wed, but may have been diluted by all the fluids they were dripping in me. My platelets were down to 259, right in middle of normal range of 150 to 450.

My hematologist stopped by at noon for a quick visit. Anyway, he said that the IgG seemed to be ineffective since I was now having transfusions every two weeks. So no more IgG. Also since my platelets are back under control, he reduced the Anagrelide to one .5mg pill a day. This essentially puts me back to January when we started experimenting with Prednisone, variations on the AG and IgG. Only difference is Levaquin antibiotic I take for the next week. I have a monthly appt with him next Wed when we will regroup and decide what to do next.

It was also great to have my sister and mother stop by for a short visit after lunch to break up the monotony. It was another 9 hour day watching drips after 72 hours of the same earlier this week.