Shingles

I saw the Dr today and reported that while I was feeling more energetic, I was also getting more aches and pains. My hgb was 10.1, down a little from the 10.6 last week, but no reason for more blood or IgG. Dr not sure if hgb improvement due to IgG or reduced Anagrelide, so will get blood checked every week. My platelets were up more to 655 today and Factor 2 was 35 so my Coumadin was increased a little to compensate.

My joints have been achy since I quit the Prednisone last week. My right knee is especially bad, sometimes too stiff to bend. It also was my life saver 18 months ago when I was supposed to have it replaced. The preop physical was when my anemia and shortness of breath was first noticed.

But the right side of my neck has been achy, numb and warm recently. I thought it was just more arthritis, but Dr thinks it may be shingles, herpes zoster. He also noticed some bumps that might be a start of the shingles blisters. He prescribed Acyclovir, 800 mg 5x per day, for the next week to try and knock it out. I hope it does, because I had shingles on one side of my back in the early 70's while in grad school. That was one of the most miserable experiences of my life.

Stay tuned for the next episode, hopefully not before next Tuesday's blood test.

Improvement Continues

I was in for a blood test this morning and found out that my Hgb is now up to 10.6 from 10.4 last week. This is not a significant change, but great since it did not drop. The true test is next week when it may drop due to the IgG getting depleted. If so, I may need some more IgG or another blood transfusion. I also see the Dr then and get his opinion on what happens next.

My platelet count was also up to about 600 from 187 two weeks ago when I reduced the Anagrelide to every other day. Dr wants to watch that for another week before deciding what to do. He also decided to keep me on the Procrit so I am getting another 4 weeks of injections to take at home. I took my last Prednisone today. Had tapered down to 10 mg per day in the last week from initial dosage of 120 mg two months ago.

I am feeling pretty good and can tell that my Hgb is above 10.

IgG Works

I was in for a blood test early this morning and got great news. My hgb was 10.4, probably the highest that it has been in over a year and up from the last measurement after my blood transfusions on Friday. I will getting it checked again next Wednesday. I thought that maybe it was about the same since on Monday and yesterday, I shoveled snow with little problem. But I was surprised that it had actually increased. Hallelujah!!

From "Our Daily Bread" for today:

The rarest [blood], AB-Negative, is found in only 1 in 167 people, or 0.6% of the population. ... "The rarest blood type is the one that's not there when you need it." There is another supply of blood that is one of a kind and always available to those who ask for it. First John 1:7 states, "The blood of Jesus Christ His Son cleanses us from all sin."

My blood is A-Negative which is found in only 6.3% of people. But then that number is reduced by the antigens C, D and E that I have in my blood. Thank God that Jesus' blood is available infinitely and to all. There is only one test for a match; just believe and accept the free gift.

Back from Hospital

I finished my ivIgG yesterday and drove home from the hospital. Marilyn drove to the hospital, but you know the "man" has to drive home. When I walked out to the car, it felt a little cold. I then remembered that I gave Andrew my jacket in the emergency room and he took it home.

Anyway, feeling much better today. Andrew and I shoveled about 10" of snow from the driveway. He did most of the heavy lifting, but I stayed with him shoveling the edges and cleaned off both cars. We then drove the van out the unplowed street and bought another shovel to replace one that disappeared this morning.

I changed my comments setup so that you should see any additions almost immediately. I had it set for my review and approval since Anna had received some nasty anti-Christian comments on hers. I need to have her show me how to delete comments if such occurs, though I may have a different setup with the special domain name.

High Speed Internet

The drips continue, but I don't look at them as much. I got my laptop to work in high speed wireless mode through the University Hospital network. I had tried on Friday, failed and called the U help desk. Since it was late, they referred me to others twice and I never heard back.

This afternoon, I tried connecting to my office network and it worked for a while. The error message indicated they were working on some network stuff there, unless they thought I was a hacker and blocked me. Anyway, I then set the name server to the one that I use from home and everything worked. I ran my standard speed test and found that it was running at close to 10 Mbps, 2 to 3 times as fast as I get at home. I may have to come back here just for the fast internet. Really, it will make things much more tolerable when I come back for another transfusion.

The last bag of ivIgG (or IGIV) is just about through and then I can go home. I probably will take a few days vacation this week while both Marilyn and Andrew have spring break. Not sure when I will have a better time to use vacation later.

Drip, drip...

Still writing this from the hospital on Sunday, but looking to go home this afternoon. My first bag of ivIgG took 10 hours to go in and finished at 5 am this morning. I petitioned the Dr to send me home and have me come back on out-patient for the rest. But they still want to monitor me while they see how I react. So they started a second bag of 1800 ml at 10am and thought they could speed it up to finish in about 6 hours. The nurse has been increasing the speed periodically and it is now up to 300ml per hour. So I have now been here for about 58 hours watching the IV drip, drip, drip...

Looks like I missed the nice weekend and it may be snowing when we drive home this evening . Depending on how I feel, may have to shovel snow tomorrow morning and go to work . I will be back in every week for a blood check and will get more ivIgG when necessary. Nurse thinks this stuff cost $10,000 per bag so glad (hope) that the insurance is paying for it. At the current rate that is about 50 cents per drip.

Immunoglobulin G

Well, I am still at the hospital and will be at least one more day. After 4 units of blood yesterday, my hgb only made it to 9.2. Last night, I had a slight fever and head ache. I still have a fever of 101. Latest idea is to give me intravenous immunoglobulin G (ivIgG). IgG is supposed to act as a decoy so that the immune system attacks it instead of the red blood cells. Will get some today and tomorrow and if I tolerate it ok, should get to go home tomorrow afternoon. I will need to get blood tests every week and then more blood and ivIgG probably in three weeks.

Emergency Room

Last night, I experienced some irregular and rapid heartbeats. Marilyn and Andrew took me to the emergency room at 12:30am where they wired me up and monitored me for a few hours. I witnessed an episode where my heartrate went from 88 beat per minute to 148 and back down in the space of a minute. I could sense it was happening and turned to see it on the monitor just in time.

My hemoglobin was also down to 5.9, the lowest that I have had. Since I was scheduled for a transfusion at 11:30am, they just checked me into the hospital and had blood flowing into me by 5:30am. After 2 units of blood, my hgb was up to 7.9. Since they had more blood typed for me, they gave me 2 more units which just finished. I expect my hgb will be up close to 10 which will be the highest in the past year. That will make it the lowest and highest all within the same day. They will monitor me over night and expect to let me go in the morning. No more rapid heartrate that I can sense, now that my hgb is back up. I should have all kinds of energy for the reat of the weekend, until the cycle starts all over.

This actually has been a blessing since it may get me on a cycle between 10 and 8 instead of between 9 and 7 ( or even lower). If the cycle is faster than every two weeks, it may be a factor in whether the BMT is warranted.

Keep looking up!

Reduce meds

I had my monthly appointment with hematologist today. My hemoglobin was 7.4 so I am scheduled for another blood transfusion on Friday. Since it seems like this may be a biweekly thing, we agreed that the threshold for transfusions would be raised to 9 rather than 8. This in effect will keep my hgb between 8 and 10, rather than 7 and 9. Like it doesn't cost any more to keep your gas tank full rather than empty, except in this case I will have more power.

My platelets were down to 186 from 397 two weeks ago. Factor 2 relative to blood clotting was down to 13 from 17. My blood pressure was higher as well. Summary, we are making a change in medications, cutting AG in half (affects platelets and maybe hgb), reduce coumadin (just tonight, affects Factor 2), taper off Prednisone over next two weeks (which did not seem to reduce anemia and may be responsible for high blood pressure) and stop Procrit after 2 weeks. Procrit has not seemed to improve hgb. I will have a blood test in two weeks and check with Dr.

We discussed the possibility of a BMT further. Dr feels that it is still not warranted yet; the risk is too high versus complications of continued blood transfusions. My spleen seems to have increased in size from cleaning up RBCs and my ferritin (iron) levels are going up as well. I may need some iron chelation treatment which is now available as another pill instead of a blood filtration process.

I am a little disappointed since I thought a BMT might be the magic pill to cure this, but with my age and blood clotting problems, the risk is elevated. There are also BMT complications of Graft versus Host Disease (GVHD) that could take several years to clear up. But it is certainly good to have an option if the blood counts drop even more.

Prayers are appreciated.

Lesson in this

The last ten days, since my last transfusion, have been pretty good. Last weekend, I went shopping at Home Depot, Sam's and the Northtown Mall, walking all around these large stores. I also ushered at church on Ash Wednesday and worked 42.5 hours. Friday, I even applied for a higher level manager job at work. Yesterday, after visiting my sister, I cleaned a portion of the basement, sorting through some of my old computer stuff, even carrying old computers and heavy monitors around. But then, I am pushing myself, trying to be positive about my situation.

During all of this, I can sense my blood hemoglobin dropping. I can do less and less before breathing hard and having to take a short break. My blood pressure and heart rate are also increasing again. Another blood transfusion may be necessary in the next week. I have my next doctor appointment on Wednesday when hopefully we will determine whether a BMT is the next step.

Everyday, I read the "Our Daily Bread" devotional through the internet. It always has something that seems to speak to my situation. Recently, it has had a link to a Discovery Series titled: "Joseph: Overcoming Life's Challenges". One section titled "The lessons of life" starts out:

"On the old Happy Days television show, Richie Cunningham had just been "grounded for life" by his father, Howard, for misbehavior. As they talked about it, Howard asked his son, "Did you know that there is a lesson in this for you?" Richie's response was priceless: "I figured anything with this much pain had to have a lesson in it somewhere." That is real life! We do not learn character in times of ease and prosperity but in times of difficulty. The greatest lessons of life are often the product of our most serious heartaches."

Later on, the author states "Everything happens in our lives for a reason, and a great part of that reason is to help us grow in our faith." My trials over the past several years have certainly strengthened mine.

Isaiah 40:31 but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

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.

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.

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!

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!

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.

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.

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.