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.