Positive results

The results of my blood tests yesterday show that my Hgb is up to 10.1, my platelets are down to 513 and my Factor 2 is 23%. All of this is positive. My Hgb was 9.7 last week just before my IgG IV so that may be taking effect. There are no changes in my medications this week, but I expect my Anagrelide will be reduced back to its original level when the platelets drop even lower. I am scheduled for another IgG IV next Thursday and every two weeks so hope to see Hgb going up some more.

It was an interesting visit with my doctor. He had a med student into observe and was explaining my medical history, demonstrating some of the checkup techniques, examining my color, listening to my heart, checking my spleen, etc. When the med student finally felt my spleen, after several trys, she was thrilled because this was her first.

The doctor also described my condition as a Coombs' positive auto-immune hemolytic anemia and then included my other complications. He also explained that my JAK2, analyzed by Mayo Clinic, was negative. He stated that my MPD was like ET (essential thrombocythemia) and downplayed the MDS that Mayo had highlighted a year ago. It is unclear whether a negative JAK2 is good or bad. I don't have that gene mutation, but then may not be able benefit from treatment that comes from further research related to it. Anyway, it was an interesting discussion between the doctor and the med student who could ask more intelligent questions that I could.

Amazing Grace

Most of us are familiar with the words of the song "Amazing Grace", written by John Newton in the late 1700's. Robert Schuller, Jr. used the story of John Newton as a sermon illustration this morning. After listening to Schuller, I did a Google search and learned more about John Newton and the song. It was interesting to learn that the song has been modified over the years and that the original words had a special meaning to me in these times. The last two "original" verses that I had not seen before are:

Yes, when this flesh and heart shall fail,
And mortal life shall cease;
I shall possess, within the veil,
A life of joy and peace.

The earth shall soon dissolve like snow,
The sun forbear to shine;
But God, who call’d me here below,
Will be forever mine.

King's move 2

Just a note that the sermon illustration about the "King having another move" can now be found on the Redeemer Lutheran Church's message audio page. Click on one of the audio links for the April 16th sermon on Hope by Pastor John Niewald. The "King's move" starts about 2/3 through the sermon, but the whole sermon is worth listening to. The sermon started out with the playing of a video about Jason McElwain, an autistic teenage basketball benchwarmer who hit six three-pointers in the final four minutes of his last high school game.

Negatives

Dr. Tony Evans has an inspiration spot titled "The Alternative View" which aired on KTIS radio this morning (April 20). He used the analogy of developing photographs to what good can come out of negative tough times in your life. Some people, especially professionals, still use photographic film where a picture is captured as a negative. The developer takes the film negatives into darkroom where through a process that most of us do not understand, converts the negative into a positive multicolored image. In a similar way. God can take our negatives, and in a way which we do not understand , turn them into positives.

Today, I was in the day hospital for the IgG IV which took about 4 hours. They speeded it up from last time and I was able to work again while watching it drip. The effect of the Benadryl and probably the IV made me tired out so I came home and slept for 3 hours. I started out the day with a dentist appointment and also was out part of yesterday for an MRI of my neck. The MRI showed some degeneration which I need to review with a neurosurgeon. Actually, my neck is not hurting that much any more so I am not in a big hurry to see another doctor.

King's move

My schedule for the week changed this morning when I was able to get in for my blood transfusion. The MRI for my neck switched to Wed and the IgG IV to Thursday. I also have a dentist appointment on Thurs at 7am to make it four related medical appointments for the week, just like last week. A blood test before the transfusion this morning confirmed a drop in my Hgb to 7.9, but should be pushed back up to close to 10 by now. The increase in my anagrelide is helping to lower my platelets back to about 600, but also gives me a little heart pain, one of its side effects. Once it gets down below 400, I will return to my original level of anagrelide that was fine for six months.

With all this time spent away from work, I have arranged to telecommute from the hospital. Dr gave me a note saying that it was ok, both for my health and the day hospital, for me to work during my transfusions. I connected my laptop wirelessly through the U of MN network into our company network and telecommuted a couple of hours today. I would have done more, but the Benadryl they gave me with the transfusion made me sleepy. I came home afterwards and took a two hour nap.

So how does all this relate to the "King's move"? Yesterday, I made it to our church Easter service (before driving to Rochester to visit my mother-in-law and then stopping by my sister's place for dinner with my mother and other relatives). The pastor's sermon illustration was about a painting titled "Checkmate" that was on display in an art gallery. A master chess player examining the chess pieces noted that it was not a checkmate since "The king had another move". The pastor related this back to Moses at the Red Sea, Daniel in the lion's den, David facing Goliath and Christ dieing on the cross. In each case, the "King" had another move. In my case as well, I believe the King has many more moves to make and even when I face death, like we all will, he will have one more move. "For God so loved the world that he gave his only begotten Son, that whoever believes in him shall not perish but have eternal life." John 3:16

More blood needed

While I was at local med center for my neck today, I got a quick finger prick blood check. My Hgb was down more to 8.2. Since it was 9.0 on Tuesday, it will probably be down to 7.5 by Monday. They faxed the results to my hematologist. We arranged for a blood type cross and match at an open Univ clinic on Saturday afternoon so that the blood bank can get me some blood for transfusion early next week.

I am now scheduled for transfusion on Tuesday, but wait listed for Monday. May end up with conflict and need to reschedule MRI. I had planned to drive to Rochester and visit my mother-in-law on Saturday, but will now stay in Minneapolis for the weekend.

Don't do necks

Well after living with my achy neck for three weeks, I thought I might get some relief. Hematologist referred me to orthopedist since I have had more knee and neck pain. I saw U of MN orthopedist yesterday. Nurse had me put on bright red shorts during x-rays of my knees. She joked that patients don't walk out with them anymore.

When Dr came in and saw my blood results, he said there was nothing to be done. Scared him away and no potential for expensive knee replacement. He said they could give me a cortisone shot in my knee, but I don't let it get that bad. I suppose if I did overwork it and it got inflamed and swollen, that might be an option. But my big disappointment was that he did not do necks. Would not even look at it. Referred me to another Dr in the same who could not see me until May 31 since I was a new patient. I told them I had neck pain for over 3 weeks already, would not wait that long and walked out.

I came back to my office and called my family doctor. I thought it might be good time to get a general practitioner to review what I was going through and see if my records were being sent back there as well. I had an appointment this afternoon and noted that they were up-to-date with medical reports sent from the Univ Med Center. I now have an MRI of my neck scheduled on Monday. Maybe I need some therapy which I could get locally. Getting tired of going to appointments; third time this week, week is not over and not looking better next week.

Spring Ahead

We switched our clocks ahead a little over a week ago, but I feel like I am falling back. I did have an IgG IV last Friday while spending seven hours at the Day Hospital. I think the dose of 55 mg was 1/4 of what I received in the hospital over the weekend of March 11. I had also resumed my previous Anagrelide dose of .5 mg per day. But the results of my blood test today show my Hgb is down further to 9.0 and my platelets have increased further to 931. My Factor 2 results have not come in yet. I can sense the drop in Hgb since I get winded quicker, though still managed to work a couple of hours in the yard last weekend.

Dr has now adjusted my Anagrelide to 1 mg per day, back to my original level in September, last year. At that time we had to reduce it within two weeks because it was causing me headaches and a pounding pulse. My Hgb also dropped to 6.4 at the time, requiring a third blood transfusion within 5 weeks. That might have been a result of the Hydroxyurea that I had been taking since my Hgb then held steady for over 3 months. It will be interesting to see what happens in the next week. Haven't I seen this movie before?

But on the bright side, Spring is here. It was sunny and 79 degrees yesterday and still is 70 today, though rain is threatening. There are pros and cons of having my medical care at the University. During these Spring days, all of the students shed their winter clothes and become more active. There are joggers, roller bladers and bicyclists. Not sure if it makes me feel younger or older to share the streets with all this energy around me. I guess I do tend to suck it in and walk a little more briskly. Have to watch more carefully where I drive as well. It is certainly a diversion from sitting around the office.

More IgG

I was in for blood test yesterday and saw the Dr this morning. My Hgb was down to 9.7 and my platelets were up to 907, proving that reducing the Anegrelide did more harm and questionable good. I am now back to my original prescription of .5 mg per day. Also since my Hgb is starting to drop, I will get more IgG on Friday. Dr plans to repeat IgG every two weeks over the next three months while monitoring the results. My Factor 2 was also still up at 37, out of the target range of 15-25, so my Coumadin is being adjusted as well. While Drs do not think there is a connection between these three medications, my bet is that my Factor 2 will be below 15 next week and we will be adjusting that again as well.

Psalm 6:2
Be merciful to me, LORD, for I am faint; O LORD, heal me, for my bones are in agony.

I mentioned before that my arthritis has been acting up again since I quit the Prednisone. My right knee locks up some times, especially when I roll over in bed and bend my knees to avoid the twist from my feet. I have completed the week dose of Acyclovir for my "emerging" shingles with no change to the ache, numbness and warmth in my neck. The Dr thinks that the "bumps" on my neck possibly from shingles have disappeared, but I haven't noticed any difference. So next week I see an orthopedist to have a look at both problems. I am also allowed to again take Aleve which seems to help the arthritis pain somewhat better that Tylenol.

It is a little frustrating to still not have a solution to my problem, but I am encouraged that the IgG seems to work and look forward to getting more energy from a higher Hgb level.

God will make a way

While resting in bed this morning, I was listening to a playlist from my iTunes library. I have a couple playlists that I go to sleep with, never seeming to make it past the first few songs before I am asleep. This playlist starts with "The Lord's Prayer" by the Statler Brothers. Anyway, the second song had special meaning this morning. It is "God will make a way", sung by Janet Paschal, who incidently has struggled with cancer over the past year. I first heard Janet sing this song on one of the Gaither's televised concerts and then downloaded it from the Apple iTunes music store sometime last year.

The complete lyrics and song by Don Moen can be found here.

God will make a way,
Where there seems to be no way
He works in ways we cannot see
He will make a way for me

May he make a way for you as well.

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.