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.