I had appointments this past Friday, and though not much has changed in my condition, status, or symptoms, there was enough to encourage the docs to say that they think I may have turned the corner with this virus, and might now be on the upswing of the curve, headed ever so slowly still, towards healing. i am coughing more, and breathing is a bit more labored, though it seems that is tied to the humidity outside. i will have my next visit witht he docs on Fri. July 10th, and they will run a number of tests and scans that day to make sure nothing is getting worse and the virus is getting better.
So, for now, pray with us that:
1) the virus really is healing and getting out of my system, and that healing would happen a bit more rapidly than it has been.
2) the tests & scans would show no growth or progression with either cancer or the virus,
3) that i wouldn't have to have any further inpatient treatment for the virus
4) for safe travels to NH and back for the visit on the 10th, and that we'd be able to make these trips less frequent real soon.
thanks, Jon & Lisa
Wednesday, June 24, 2009
Tuesday, June 9, 2009
an update and links to some good reading
It has once again been too long since I update you all here on the blog, so here goes on trying to catch you up since the last post. After our trip to NJ over Memorial Day weekend, which went pretty well, given my condition right now, we returned home by way of NH and "stopped in" at Dartmouth for a check-up. We were there on the Thu. after Memorial Day, which made it about 2 months since the first sighting of the RSV infection in my system, and while it had not visibly progressed on any of the tests or scans, I certainly wasn't improving (in fact, with having to go on the oxygen, a good argument could be made that my condition had gotten worse, however slight it might have been).
So, we agreed with the recommendation of the transplant doctor, in consult with the infectious disease specialist, for me to admitted there at Dartmouth for 3 days to receive course of Ribovirin treatments, a nebulized inhalation treatment that required going into a "bubble" 3 times a day and putting on a mask to inhale a fine mist/powder that is suppposed to get down into my lungs and help to knock out the RSV. I was discharged on Sunday May 31, so it has now been a little over a week since the treatments ended, and I think there has been some slight improvement. I was coughing a lot when I got out, including several coughing fits of varying lengths each day, which were at times uncontrollable and up to 2 hours long. In the last couple of days, they have been less severe and no longer than 15-20 minutes. I was having a lot of weasing, squeaking, and strange breathing sounds when I was discharged, but am having less of that now. I am still having considerable breathing difficulty, still need the oxygen pretty consistently, except when I am in bed asleep, and I still have very little stamina or tolerance for exertion at all (a walk out to the deck and a lap or two around the 15 X 15 or so area wipes me out and I have to sit down to catch my breath).
I was able, however, to be discharged in time to spend my birthday last Wed. June 3rd here at home with Lisa and the kids, and we had a great day being at home together, enjoyed a birthday dinner from the grill and then opened presents together. It was great to be home with them for my birthday this year, as I've spent the last 2 birthdays in the hospital, as well as several other holidays (valentine's day, Lisa's birthday, Father's Day, etc.). I was actually able to avoid (dodge may be more like it!) all doctors appts. and hospital visits last week, for which I am overjoyed!
I went to Brunswick yesterday to have routine blood work drawn, and will find out when those results come back whether I need to have an IV immune treatment this week or not, and what medication changes are coming as they continue to try to taper me off both of the immune suppressants I am on. So far, I seem to be tolerating the reductions they've made pretty well, which is another thing to be thankful for. We will be returning to Dartmouth for a checkup next Friday June 19, and hope it is just a checkup this time, and not another surprise admission like last time!
Right now, you can pray with us for the following:
1) continued good health for the rest of the family - Lisa, Jillian, and JJ have all been pretty healthy as of late and that has made it easier to focus on my issues.
2) that my overall health and condition would improve to the point that I could get off the oxygen and get rid of the coughing and respiratory symptoms.
3) that we would have safe travels to NH next weekend and that all would go smoothly at that visit, where we'll be seeing both the transplant doctor and the infectious disease doctor.
4) for our transplant doctor - wisdom for how to treat me and how much to require me to be there vs. have things done here at home in Maine. Also, for his family as his mother came down terminally ill this past week and is not expected to live through the coming weekend. Pray for his mom's salvation and that God would show Himself in the midst of everything. Pray also for my witness to him next time I see him.
Thanks again for your "bearing the burden" with us the load of these prayer concerns by lifting us up before the throne of grace.
James 1:3 (ESV) "you know that the testing of your faith produces steadfastness (Greek hupomene - "to bear up under"). And let steadfastness have its full effect, that you may be perfect and complete, lacking nothing."
It's my prayer that when the opportunity to perfect & complete your faith comes your way (trials and difficulties WILL come your way, by the way, if you are truly a disciple of Jesus, and that;s exactly what James is saying trials are - an opportunity), you will have the ability, faith, & wisdom enough to make the choice to "hupomene" - bear up under - rather than cut & run or seek to escape at the first opportunity. Look for what God wants to do in and through you rather than what's happening to you - it will change your perspective and your life!
Now for links to some good reading:
Did you know that you are a theologian, whether you think of yourself that way or not? Read this
Do you want to know what really matters in life? Do you want to increase your obedience to Jesus? Read this quote
If you're a leader of any kind, whether a Sunday School teacher, a pastor, deacon, elder, or influencer of any sort, read this passage, originally from Richard Baxter, the 16th century Puritan pastor and writer, on keeping your heart.
Happy reading, and may your heart be encouraged and your faith grow as a result of what you read here!
So, we agreed with the recommendation of the transplant doctor, in consult with the infectious disease specialist, for me to admitted there at Dartmouth for 3 days to receive course of Ribovirin treatments, a nebulized inhalation treatment that required going into a "bubble" 3 times a day and putting on a mask to inhale a fine mist/powder that is suppposed to get down into my lungs and help to knock out the RSV. I was discharged on Sunday May 31, so it has now been a little over a week since the treatments ended, and I think there has been some slight improvement. I was coughing a lot when I got out, including several coughing fits of varying lengths each day, which were at times uncontrollable and up to 2 hours long. In the last couple of days, they have been less severe and no longer than 15-20 minutes. I was having a lot of weasing, squeaking, and strange breathing sounds when I was discharged, but am having less of that now. I am still having considerable breathing difficulty, still need the oxygen pretty consistently, except when I am in bed asleep, and I still have very little stamina or tolerance for exertion at all (a walk out to the deck and a lap or two around the 15 X 15 or so area wipes me out and I have to sit down to catch my breath).
I was able, however, to be discharged in time to spend my birthday last Wed. June 3rd here at home with Lisa and the kids, and we had a great day being at home together, enjoyed a birthday dinner from the grill and then opened presents together. It was great to be home with them for my birthday this year, as I've spent the last 2 birthdays in the hospital, as well as several other holidays (valentine's day, Lisa's birthday, Father's Day, etc.). I was actually able to avoid (dodge may be more like it!) all doctors appts. and hospital visits last week, for which I am overjoyed!
I went to Brunswick yesterday to have routine blood work drawn, and will find out when those results come back whether I need to have an IV immune treatment this week or not, and what medication changes are coming as they continue to try to taper me off both of the immune suppressants I am on. So far, I seem to be tolerating the reductions they've made pretty well, which is another thing to be thankful for. We will be returning to Dartmouth for a checkup next Friday June 19, and hope it is just a checkup this time, and not another surprise admission like last time!
Right now, you can pray with us for the following:
1) continued good health for the rest of the family - Lisa, Jillian, and JJ have all been pretty healthy as of late and that has made it easier to focus on my issues.
2) that my overall health and condition would improve to the point that I could get off the oxygen and get rid of the coughing and respiratory symptoms.
3) that we would have safe travels to NH next weekend and that all would go smoothly at that visit, where we'll be seeing both the transplant doctor and the infectious disease doctor.
4) for our transplant doctor - wisdom for how to treat me and how much to require me to be there vs. have things done here at home in Maine. Also, for his family as his mother came down terminally ill this past week and is not expected to live through the coming weekend. Pray for his mom's salvation and that God would show Himself in the midst of everything. Pray also for my witness to him next time I see him.
Thanks again for your "bearing the burden" with us the load of these prayer concerns by lifting us up before the throne of grace.
James 1:3 (ESV) "you know that the testing of your faith produces steadfastness (Greek hupomene - "to bear up under"). And let steadfastness have its full effect, that you may be perfect and complete, lacking nothing."
It's my prayer that when the opportunity to perfect & complete your faith comes your way (trials and difficulties WILL come your way, by the way, if you are truly a disciple of Jesus, and that;s exactly what James is saying trials are - an opportunity), you will have the ability, faith, & wisdom enough to make the choice to "hupomene" - bear up under - rather than cut & run or seek to escape at the first opportunity. Look for what God wants to do in and through you rather than what's happening to you - it will change your perspective and your life!
Now for links to some good reading:
Did you know that you are a theologian, whether you think of yourself that way or not? Read this
Do you want to know what really matters in life? Do you want to increase your obedience to Jesus? Read this quote
If you're a leader of any kind, whether a Sunday School teacher, a pastor, deacon, elder, or influencer of any sort, read this passage, originally from Richard Baxter, the 16th century Puritan pastor and writer, on keeping your heart.
Happy reading, and may your heart be encouraged and your faith grow as a result of what you read here!
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