This word I like... We architect our life...
A song, a sigh... developing words that linger...
Through fields of green, through open eyes... It's for us to see.
Interanimate: To animate or inspire mutually

Monday, March 17, 2008

Day +68 Forward to the Past

Parker and Mom back at home now. Whew!
Parker, like me last month, had too much bilirubin, had to stay hospitalized for a few days. Excess bilirubin in newborns is called Jaundice. In adults it can lead to renal falure. Fortunately, the bilirubin has worked itself out for both of us. But we're not out of the woods yet. Parker is a week old and I'm 68 days old. Things are still getting straightened out inside. Organs are aligning, brain is booting up, lungs getting tested. Parker's journey was much, much more traumatic than mine. I feel for him. He went from the perfect environment; not a care in the world, occasionally feeling a little curious about various things floating by and the source of the brightness that sometimes entered his space, to unbearable pain, unwanted movement, and the cold; the bright lights and reaching hands. Ugh. Parker was transplanted to a different world. I just got a minor overhaul. Went in for my 100K mile servicing and it turned out I needed a new transmission. Same world for me. My journey was more nauseous than it was painful. And I knew what all the reaching hands were; nurses and doctors. Parker wouldnt have known. It must have been a nightmare for him. The awful nightmare of birth would have lasted right up until the second he looked into his mother's eyes. Then, it was love at first sight.
Parker is my transplant buddy cuz of his problem with bilirubin. However, Samuel, who I havent heard as much about, is also my bud. They are my new grand-nephews born last week and I welcome them to the world. They both have the greatest moms and I am very excited for their future.


My weekly summary is... Great! Blood counts posted on website. White cell count dipped but is not in the danger range. More on that later. However, I need to be even more reclusive for the time being. Hemoglobin count breaks a record! 11.7!

Today at my Monday checkup I learned a little more about some of the pills I am taking. One of them will be reduced again on Thursday. They come in 1 Mg capsules so that the doctor can prescribe several to start and then scale back by reducing the number. I started Tacrolimus with 8 capsules and have been at 6 now for a couple weeks. Tacrolimus suppresses the new immune cells from beating up on foreign things they find in the body; like lungs, skin, liver. Over 2-4 months, the new immune cells settle down and stop being such bullys. Somehow, they learn to recognize important organs as 'friendly'. The Tacrolimus drug is scaled back accordingly. Since I have been on the 6 pill-a-day regimen there have been no signs of my immune cells attacking the usual suspect, so they will scale the Tacrolimus back to 4 or 5 pills on Thursday. Another drug I'm taking, Ursodial, is due to be discontinued on day 90, around 3 weeks hence.

Regarding my dipping white blood cell count. The doctor said it is probably due to the antibiotic I'm taking, Septra. Evidently this suppresses more than nasty bacteria, it also aint good for neutrophils. Kind of a 2 edged sword. I guess the danger of bacteria infection is greater than that of virus. The bacteria the doctors are particularly worried about is Pneumocystis carinii pneumonia (PCP).
In light of my lower white counts I have decided to not tempt fate. I'm going to really avoid public areas more than I have. And when I'm outside on walks I will wear an N95 grade face mask again. I dont want to get sick. Any infection I get at this point will be very serious and probably put me back in the hospital. My white count actually rose 20% from last Thursday, so hopefully the count has dipped as low as it is going to go.

If feels good to be able to say, "I'm the guy who formerly had Myelodysplastic Syndrome but was cured!" Now all I have to do is literally keep my nose clean for the next few months.


Katy & Larry said...

Way to go Jim. Keep it up. So glad to hear that you can keep up your walking with the help of the N95 mask.
Happy Easter to all.
K & L

Anonymous said...

Hey Jim,
Parker says his journey was tough but he knows you went through a lot too and need to be proud of how strong you have been. He is sitting on my lap and says HI UNCLE JIM, Keep up the strength as he is keeping up his. Take care and talk to you soon

Anonymous said...

I havent been online in the past few days as I was not in town. I am so happy to hear that you are doing so well! Look at that hgb climb. I read your posts on the MDS website. 2 months without a transfusion! Way to go. It is very inspiring to read about your recovery!!!
In response to your post regarding the transplant for my dad, as much as I would love to go that route, I don;t think my father will be able to handle the chemo induction prior to the transplant. He is a small frail guy and at this point, I think my parents and I are pressing for the quality of life. My father got baptised last Sunday (praise the Lord) at this point, we are just leaving it to God's hands. My cousin's uncle (no relation to me) just passed this Wed due to pneumonia. He was 65 with some liver problem, but nothing too serious. He was 65 yrs old. At this point, even though my dad has MDS, we are leaving it to the man upstairs. I hope this is the right decision we are making.
God bless to your speedy recovery! Sending thoughts, prayers, and positive thoughts your way!

Mike B said...


I am so happy that things continue to go well for you. It is fun to read about your new nephew and your new life. What a wonderful season to truly appreciate life. Keep up your recovery. I enjoy your inspirational blogs.

Happy Easter,