100 Days

We just returned from Chicago last night after a long day of testing. The tests were done because it has been (almost) 100 days since my allergenic bone marrow transplant. Tests ran all day, a full skeletal survey, pulmonary function, and a bone marrow biopsy. There was also a visit with the Nurse Practitioner, sitting in for the doctor. Everything seems to be going well, and my recovery is moving along as well as or even better than expected. I was concerned about a rash I have developed since this could be a sign of graft vs. host disease or GVHD. But, there are no other symptoms, and everyone in Chicago agreed that this was probably not GVHD, just dermatitis. They will know more after all test results are in. I am feeling better everyday, getting stronger and able to do more. Everything seems to be on track, and hopefully Poindexter is down and out for good! One small thing though, I would not recommend a 5 hour car ride immediately following a bone marrow biopsy. OUCH!
St. Peregrine, Pray for Us.
Blessed John XXIII, Pray for Us.
Deacon John
Thursday of the 14th Week in Ordinary Time
July 8, 2010

24 Hours...

...from now we will be well on our way back to Louisville. We are getting to go home a full month sooner than we expected, and to say we are excited would be an understatement. We've already packed all we can, and all that is left is seeing the doctor today, coming back to our apartment and loading what we can in the car, and saying goodbye to this neighborhood. It's a very nice place, and for the most part we have enjoyed being here, but it's just not home. After today we only have to see the doctor twice a month. I'm feeling well, have had few problems, so as long as I'm doing well there is no compelling reason to stay. We are just grateful to God that things have gone so well. Getting the chance to continue my recovery at home is wonderful. I believe I can rest better there, and really start getting stronger. Thanks for all of your prayers.
Deacon John
Friday of the Eighth Week in Ordinary Time
May 28, 2010
St. Peregrine. Pray for Us
Blessed John XXIII Pray for Us

Homeward Bound????

Last Wednesday the doctor brought up the possibility of our going home by the end of the month, a full month sooner than we thought. He was quite positive, test results were good, the central line could be removed, and if all stayed well we could go home, since he would want to see us only every two weeks. Unfortunately layer that evening the Nurse Practitioner called to say they wanted me to take magnesium by IV for two days, then regular hydration by IV for 7 days, so the central line isn't coming out yet. But, both anti-rejection drugs have been reduced, I am feeling better, although I'm still very tired. We see the doctor again tomorrow, and hopefully get the ok for heading home. I can't wait to see the Louisville skyline come into view.

Deacon John
Ascension of the Lord
May 16, 2010
St. Peregrine, Pray for us
Blessed John XXIII, Pray for us

To Sleep...

I don't think I have ever slept this much in my life. Most nights I am in bed by 10:00 or 10:30, and I have to force myself to get up by 8:30. By 1:00 or 2:00 in the afternoon I am struggling to stay awake. I am tired of being tired. I finally managed today to garner enough energy to read e-mail, and write this. I am amazed at how exhausting this is. I have more energy than before, but it is coming back slowly. Ah well, patience, patience, all in good time. God will teach me patience yet.

Deacon John
The Ascension of the Lord
May 16, 2010
St. Peregrine, Pray for us
Blessed John XXIII, Pray for us

Olive Redux

It's been a few weeks since I posted, mostly because I have simply been very tired, and not feeling well. Some of the anti-rejection drugs have played havoc with my GI system. This left me tired, dehydrated, and wondering why I did this in the first place. But my doctor ordered IV fluids to be given at home, and thanks to that and stepping down on one of the meds I feel much better. Since I needed IV fluids, I was reunited with my girlfriend Olive, or at least a close replica. Who knew they made disposable IV poles? Olive II and I got together for a couple of hours a day for the last week. The fluids helped, the cutting back on Cell-Cept helped, and I have actually been hungry! Hopefully in a few weeks I can venture away from this apartment and explore the area a bit. Olive came to my rescue again, this time as Olive II. Maybe I'll take her home with me. Thanks for your continued prayers, believe me they are felt and appreciated.
Deacon John
Friday of the 5th Week of Easter
May 7, 2010
St. Peregrine, Pray for Us
Blessed John XXIII, Pray for Us

Back Among the...

mostly living. This is the first time since the transplant back on March 29 that I have felt energetic enough to post something. Since the transplant I have been a bit sick, mostly nauseous, thanks to all of the drugs I'm taking. I have mostly been just tired, having no energy at all. I was sprung from the hospital on Friday April 9, although parole might be a better description, since I have to go in for check-ups once or twice a week. Everyone tells me I'm doing well, either on or ahead of schedule. I have to admit, it doesn't always feel that way. But today I had enough energy to read, and to write. So now it's up to me to press myself a little more each day, regain strength, and the ability to focus. Right now I'm good for about 1or 2 hours a day. I'm hoping to double that by next week. I have to admit, it feels good to write again. Thanks for your prayer, I assure you they are felt.
Deacon John
Tuesday of the Third Week of Easter
April 19, 2010

Transplant day

I recieved my transplant this morning at appoximately 10:A.M. CDT. I was given enough drugs to effecively put me to sleep for a good portion of the day. My mother, sister (not the donor) and of course my wife were present. Everything seemed to go well, and as of now I feel alright, let's just see what the next few days bring. The entire procedure only took about 15 minutes, although the benedril and ativan and anti-nausea meds knocked me out for a good portion of the day. Now we just wait a few days and see how I feel then. So far this whole thing hasn't been too bad. Hopefully it will continue this way The one drawback is I will completely miss the Triduum, my absolute favorite time of year. But what better time to start a new life than Holy Week? I will for the first time pray the Evening Prayer of Holy Thursday and Good Friday, since Evening Prayer is not said by those participating in those liturgies. Unfortunately my tiny universe will preclude me from The Eucharistic Celebration on Easter Sunday. I do believe a Eucharistic Minister from a near by parish will at least bring Communion. All of this is a small price to pay, missing one Triduum for many, many more.
Deacon John
Monday of Holy Week
March 29, 2010