First Phlebotomy

After getting 93 units of packed red blood cells over 2+ years, the ferritin (iron) level in my body increased to unhealthy levels. The Dr has finally decided to address this and ordered phlebotomies every two weeks for the near future. We are not sure how long that will be seeing how long it was accumulating. I had my first one this morning. It is just like giving blood, except that they have to discard it. Seems like a paraphrase of an old joke is appropriate: It is better to have a lateral phlebotomy than a frontal lobotomy. (The original joke referred to a "bottle in front of me".

Interestingly, my phlebotomy was in the Apherisis lab where my brother donated his stem cells last May. In fact, I sat in the same chair next to the machine which filtered stem cells out of his blood over two days. It will be a full year on May 9th since that grand contribution to extending my life on this earth.

I also saw the Dr on Tuesday. My INR was down within range so my current level of warfarin will continue (2.5mg on Monday and 1.25mg every other day. Also I will continue my taper of prednisone (now 40mg per day tapering to 40mg every other day over the next month). My next Dr appt is on April 22nd though I will have another INR test on April 9 and another phlebotomy on April 10.

Horton Hears a Who

On a whim last night, my son (home from college) and I saw a movie based on the Dr. Seuss book, "Horton Hears a Who". We went just to be entertained by this animated film, but came away talking about what meaning might be made from the script. In the movie, Horton, an elephant, discovers very small people living on a speck on a clover flower. He hears the very small voice of the Mayor of Whoville, but cannot see the residents. He carries the flower around the jungle, telling the other animals, but no one else believes him. As he rumbles around, he causes all kinds of problems (earthquakes, high winds, darkness) on the flower and in Whoville. The mayor likewise tells his town about talking with Horton, but again no one believes. They experience the effects of Horton, but don't hear him or believe that he exists.

Anyway, we thought there was symbolism in the movie about faith in God as well as listening to hear what God has to say. This morning, I woke up thinking more about this, reminding me of a CD that one of our church "Angels" gave me when I was in the hospital last May for my BMT. The CD is named "Be Still and Know [that I am God]" by Maranatha Music. As I listened again to the CD, it gave me great peace to know that He is in control. He will deliver us from all our troubles.

When I got up, I did a search on Google and found a number of different "theological" interpretations of this movie and other related Dr. Seuss books. Some relate to abortion where the little Whoville people are the unborn that are not recognized by the animals of the jungle.

Happy Easter! He is Risen!

Atom Subscribe Added

Since my posts have become less frequent and I figured out how to do this, I have added an Atom Subscribe feed to this blog. You will note the link down on the right side where it says "Subscribe to Posts". Click on the "Atom" link and it should open a dialog helping you to set it up further.

Atom is similar to RSS and is supported by many of the same RSS readers. It works fine for me with my Macintosh Mail program and the Safari browser. There is actually a Subscribe to this Page menu item under bookmarks in FireFox as well. If it all works well, you should get the blog posts as soon as I enter them on this blog.

Back on track

The return to using prednisone has really helped me over the past week. Actually within one day, most of my pains disappeared. I went from 5 mg prednisone every other day, a week with nothing and then back up to 80 mg every day. This week, I have reduced that to 60 mg per day and will taper more again in the following weeks. I have noticed that my digestion is not normal and a lot of foods that I eat seem to go right on through. I am hungry and eating way too much but not gaining weight. I actually lost 5 lbs during that one week where it was hard for me to even chew.

The last couple of days, I have been developing a pain in my left hip and leg. It was so bad this morning that I needed to have my son put the sock on my left foot. I could not lift my foot up to my knee without twisting my hip and getting a sharp jolt. The thought is that this is also a result of GvHD.

I will be interested in what my INR is when I get it checked tomorrow. It was so high last week that I did not take warfarin for 5 days. I have noticed some bruising so some blood IS leaking out.

On a positive front, I saw my eye Dr this morning and got a clean bill of health. I go in every 6 months now to avoid any complications from GvHD in my eyes. My eyes are a little dry so I use eye drops, but they are clear and my eyesight is not changing.

I have resigned myself to being out from work for another couple of months until we see where this is leading. We may need to try some more medications and address the iron build-up as well.

Regression

It has been a rough week and a long day. I have reported my aches/pains and digestive problems in the previous post. I saw my BMT Dr this morning after waiting around for 2 1/2 hours. It took a total of 4 1/2 hrs of my day. All the while I was in pain with my right leg, knee and back: could hardly walk. Anyway, the Dr feels that since I had stopped taking prednisone that the GvHD has come back, attacking at least my joints and musculature. I was also able to leave a stool sample so they will test whether the GvHD of the gut is back as well. Either way, I am back on a high dose of prednisone and start a taper again, probably never getting off completely. Most GvHD patients end up on a low maintenance dose. The important point is that the Dr checked the "regressed" box and put "unknown" in the return to work date field on the form that we sent into the disability insurance company.

On a positive note my blood counts are all OK or improving. Platelets are now up to 107 though the normal range starts at 150. My INR was 5.4 but Dr feels it was affected by the Levaquin antibiotic that I have been taking. Target INR is still 1.5 to 2.o. So far I have not seen any blood leaking out anywhere since it is too thin. I will have my INR checked locally on Wed and then see the Dr again on Friday.

Remember that GvHD is essentially the new transplanted stem cells (immune system) fighting the old body. Seems like there may be a sermon illustration in that statement. My late brother-in-law once gave a sermon titled "The Old and New Nature". The sermon was based on Ephesians 4:22-23, “Put off your old nature which belongs to your former manner of life and is corrupt through deceitful lusts ….. and put on the new nature, created after the likeness of God in true righteousness and holiness.” Send me a personal email or leave a comment if you are interested in the complete sermon.

Aches & Pains

It has been a miserable week. Started out ok with an INR that was done locally, saving a trip to the BMT Clinic. I am also getting my prescriptions at the local Walgreen's since my BMT Clinic visits are about once a month. My INR was 4.2, high above the target range of 1.5 to 2 so I skipped 2 days of warfarin and reduced the dosage some more. I will get that checked again on Wednesday.

Maybe unrelated to that, I started getting pains in my joints on Wed. The pain moved around from my left shoulder, to my knees, my right elbow and my left jaw. The left jaw pain became an ear ache as well and I could not chew without sharp pains in my jaw. On Thursday I talked to a BMT Dr who advised me to take some Levaquin antibiotic which I have in my "home" pharmacy. I last took it in January after taking it for 8 months. It seemed to do some good, eliminating most of the joint pain and reducing the ear pain. Maybe just a coincidence since yesterday the pains moved to my right ear and left elbow. The elbow pains may be related to my lying more on the side opposite my primary ear pain. Seems to be clearing up some this morning though I am tired since I didn't sleep very well the last few days.

I see my primary BMT Dr on Monday when I will ask him whether these pains are related to my going completely off of prednisone last Sunday. My recent strange, loose stools may also be related though I have not eaten much solid food with my aching jaw. It seems like some tomato soup that I had on Thursday went right on through so my digestion is not working correctly. I hope I am not reverting back to the GvHD of the gut that I had last June and July. I lost 65 lbs at that time, but have gained back about 20 lbs. I would just as soon keep off the weight, but not this way.

Anyway, your prayers are appreciated. Keep looking up.