Our "work" in 2013 has been to fight graft versus host disease with ECP treatments two days every week. Now Ron will transition to two treatments every other week, so we are "on break" until April 10. Ron is doing very well, and the treatments have helped his skin. His balance and walking have improved, and his gait is more natural looking. He is cautious as he walks because of depth perception issues with vision only in his right eye, and the cataract in the right eye affects his vision too. We don't have any more information yet regarding scheduling of his cataract surgery.
It feels like we are in a good place, and both of us continue to be optimistic for a good 2013.
Tuesday, March 26, 2013
Thursday, March 21, 2013
No Drama This Week
And that is a very good thing! ECP treatments went smoothly as did Ron's check up with his transplant doctor. There are no medication changes except for minor adjustments with insulin to help control glucose. Steroids will be tapered at the end of the month. The goal continues to be control of graft versus host disease with ECP light therapy instead of high dosage steroids which have many side effects. After next week's treatments we will have a week that we do not have to make an overnight trip to Ann Arbor. That will be a treat for us! --only our second time in 2013.
What's next?? On April 1 Ron's prednisone will be tapered from 15 to 10 mg daily. Ron is cleared for cataract surgery, and arrangements for that will be scheduled soon. He will have a CT scan of his lungs in April. In April ECP will be two treatments every other week instead of weekly. During ECP 48 ounces of Ron's blood is spun in a centrifuge to separate white blood cells and some plasma. It is then treated with a drug that is exposed to UV light to activate the medication. The WBC/plasma altered collection is then returned to the body. Additional fluid is also infused with it. Ron has a central line with 3 lumens(a Neostar) that was surgically implanted in early February, so this two plus hour treatment is totally painless. He usually naps during most of the process as he rests in a recliner.
So...no drama this week. And now I am ready for a nap in my recliner--stress free.
What's next?? On April 1 Ron's prednisone will be tapered from 15 to 10 mg daily. Ron is cleared for cataract surgery, and arrangements for that will be scheduled soon. He will have a CT scan of his lungs in April. In April ECP will be two treatments every other week instead of weekly. During ECP 48 ounces of Ron's blood is spun in a centrifuge to separate white blood cells and some plasma. It is then treated with a drug that is exposed to UV light to activate the medication. The WBC/plasma altered collection is then returned to the body. Additional fluid is also infused with it. Ron has a central line with 3 lumens(a Neostar) that was surgically implanted in early February, so this two plus hour treatment is totally painless. He usually naps during most of the process as he rests in a recliner.
So...no drama this week. And now I am ready for a nap in my recliner--stress free.
Friday, March 15, 2013
Could we please have a little spring weather??
Now that would be good for the soul! Great being back home but getting ready to enjoy looking at water instead of a huge field of ice on the lake. It shouldn't be too many more weeks. We are enjoying college basket ball-- especially the Big Ten. We are Spartan and Buckeye fans with attachments also to the Hoosiers and U of M. That must sound very twisted!
So what about the eye issue? We went to ECP on Thursday, and the nurses and our PA Tim were concerned about the bleeding in the eye, so Ron was not able to have his treatment. Instead we went back to the Kellogg Eye Center to have the eye rechecked. They best described it as a big bruise on the eye, and it should clear in a week or two like a bruise on your skin. I was thankful to have it rechecked and appreciated the conservative approach to cancel ECP. To me it appeared to be more raised by that evening but the same this morning. This bruise is on the eye which does not have vision.
We have been stopping in Spring Arbor on our trips home from Ann Arbor to have lunch with Ron's mother who is 92. She lives in assisted living close to Ron's brother. Rick is her go-to man for groceries, appointments, coordination of services for her, frequent visits, and those quick visits when needed to fix her tv remote, lift chair, etc. They include her in their holiday festivities. Priceless.
I am very much hoping that next week's appointments are uneventful. It will be good to touch base with the doc regarding insulin dosing and this week's events. It feels like we are back on track today.
So what about the eye issue? We went to ECP on Thursday, and the nurses and our PA Tim were concerned about the bleeding in the eye, so Ron was not able to have his treatment. Instead we went back to the Kellogg Eye Center to have the eye rechecked. They best described it as a big bruise on the eye, and it should clear in a week or two like a bruise on your skin. I was thankful to have it rechecked and appreciated the conservative approach to cancel ECP. To me it appeared to be more raised by that evening but the same this morning. This bruise is on the eye which does not have vision.
We have been stopping in Spring Arbor on our trips home from Ann Arbor to have lunch with Ron's mother who is 92. She lives in assisted living close to Ron's brother. Rick is her go-to man for groceries, appointments, coordination of services for her, frequent visits, and those quick visits when needed to fix her tv remote, lift chair, etc. They include her in their holiday festivities. Priceless.
I am very much hoping that next week's appointments are uneventful. It will be good to touch base with the doc regarding insulin dosing and this week's events. It feels like we are back on track today.
Wednesday, March 13, 2013
Settling down now...
Just another day in Ann Arbor putting Jan through the wringer.. ECP was at 11:00, so Ron had his preliminary bloodwork at 9:30. I like this schedule because we can move at a non-stressful pace at the Hampton. (very helpful when I have snow to remove from the car AGAIN) Ron's eye appointment was at 1:45, so I brought him lunch during the last part of ECP. So far so good.
I was glad that Ron was having his eyes checked because his high glucose at some point everyday affects his vision. The health of his right eye is even more important since he has irreversible complete loss of vision in his left eye. Mainly, I am thinking that I want the eye doc to reinforce how important it is to avoid foods that cause his glucose to go too high. The exam begins with the eye chart which is electronically projected, but even so, the E is still the largest letter. With his good eye, Ron cannot make out any of the letters until the solitary large E is projected. I had given him insulin at lunch as well as his Lantus after breakfast, but I know this is a time ..almost 2 hours after a meal when the glucose is high. The exam continued-- which includes a tear duct test, etc. For this, they attach small strips of paper to measure tear production.
Without trying to sound dramatic,it was gut wrenching for me. Over an hour passes before the main eye doc comes in, and he rechecks, and there is significant change since September's exam but not as bad on the recheck as an hour earlier. He would need a new prescription, but his vision is fluctuating, so we are in a holding pattern to change his glasses. The doc also tells us that he has a cataract, and in addition to the high glucose, that would appear to be the reason his nearsightedness has become worse. He can read okay. He will need cataract surgery when cleared by Dr. Mag. Personally, I think he needs a much higher platelet count, and I will insist it be done by a doc who does a lot of them every week.
To add to the stress, when the person who did the paper strip test removed the strip, it broke a capillary, and now as he puts it, his left eye looks like something you might want on Halloween. By this time, I am so relieved that he is not going totally blind that I find his comment very funny and break into hysterical laughter. His entire eye is bulging red, but as long as he can close his eye, I won't call the doc on call. Actually, something similar happened awhile back, and as long as he can close his eye, we can wait. It also helps knowing that we will be back in the clinic tomorrow morning. Indeed, through the wringer today.
I was glad that Ron was having his eyes checked because his high glucose at some point everyday affects his vision. The health of his right eye is even more important since he has irreversible complete loss of vision in his left eye. Mainly, I am thinking that I want the eye doc to reinforce how important it is to avoid foods that cause his glucose to go too high. The exam begins with the eye chart which is electronically projected, but even so, the E is still the largest letter. With his good eye, Ron cannot make out any of the letters until the solitary large E is projected. I had given him insulin at lunch as well as his Lantus after breakfast, but I know this is a time ..almost 2 hours after a meal when the glucose is high. The exam continued-- which includes a tear duct test, etc. For this, they attach small strips of paper to measure tear production.
Without trying to sound dramatic,it was gut wrenching for me. Over an hour passes before the main eye doc comes in, and he rechecks, and there is significant change since September's exam but not as bad on the recheck as an hour earlier. He would need a new prescription, but his vision is fluctuating, so we are in a holding pattern to change his glasses. The doc also tells us that he has a cataract, and in addition to the high glucose, that would appear to be the reason his nearsightedness has become worse. He can read okay. He will need cataract surgery when cleared by Dr. Mag. Personally, I think he needs a much higher platelet count, and I will insist it be done by a doc who does a lot of them every week.
To add to the stress, when the person who did the paper strip test removed the strip, it broke a capillary, and now as he puts it, his left eye looks like something you might want on Halloween. By this time, I am so relieved that he is not going totally blind that I find his comment very funny and break into hysterical laughter. His entire eye is bulging red, but as long as he can close his eye, I won't call the doc on call. Actually, something similar happened awhile back, and as long as he can close his eye, we can wait. It also helps knowing that we will be back in the clinic tomorrow morning. Indeed, through the wringer today.
Sunday, March 10, 2013
Pure Michigan
Sad Duck and friend swimming with Canada Geese in open water...ice fishermen in the background!
Extracorporeal Photopheresis = ECP
The ECP treatments appear to be making a positive difference in Ron's GVHD. His skin is much improved, and he no longer has mouth sores. Graft versus host disease usually is apparent in skin changes first. Ron has had skin issues of varying degree from almost the first week after his transplant 18+ months ago. Deciding to commit to ECP treatment has been a significant time commitment. We have only had one week in 2013 that we have not had overnight stays in Ann Arbor. We will follow this same pattern for 3 more weeks! Then the treatments will be every other week starting in April. It will be a treat to just stay home for more than a 5 day stretch.
We continue to make adjustments to cope with high glucose readings. I never would have imagined that I could give so many injections!! The doc tells us that the levels should moderate as the steroids are reduced. I hope so. It helps that I like the diet changes. I suggested he try no sugary treats for 5 days to see how it affects his levels, so he is doing that and photocopied a little "Jan's 5 Day No Sugar Plan" sign that he has posted all over the house. --even one on my bathroom mirror! A nice side effect would be that I might lose a pound or two as time passes. Ron is slowly gaining weight-- just short of 160 pounds on our home scale.
Seeing some very early signs of the seasons changing: open water along the shore with Canada geese and sad duck swimming together!! AND ice fisherman still out farther fishing; as Niccole asked, "Isn't that dangerous?" (Ron & Marilyn, I have a great picture of this just down from your Michigan home.)The daffodils came up under the snow, and I saw one crocus blooming.
Love to all--
Thanks for hanging in there with your support and positive thoughts; it means a lot to us.
Ron & Jan
We continue to make adjustments to cope with high glucose readings. I never would have imagined that I could give so many injections!! The doc tells us that the levels should moderate as the steroids are reduced. I hope so. It helps that I like the diet changes. I suggested he try no sugary treats for 5 days to see how it affects his levels, so he is doing that and photocopied a little "Jan's 5 Day No Sugar Plan" sign that he has posted all over the house. --even one on my bathroom mirror! A nice side effect would be that I might lose a pound or two as time passes. Ron is slowly gaining weight-- just short of 160 pounds on our home scale.
Seeing some very early signs of the seasons changing: open water along the shore with Canada geese and sad duck swimming together!! AND ice fisherman still out farther fishing; as Niccole asked, "Isn't that dangerous?" (Ron & Marilyn, I have a great picture of this just down from your Michigan home.)The daffodils came up under the snow, and I saw one crocus blooming.
Love to all--
Thanks for hanging in there with your support and positive thoughts; it means a lot to us.
Ron & Jan
Wednesday, March 6, 2013
A Good Report...
Ron had a good doctor appointment this morning. He is recovering well from his pneumonia at the beginning of February. Last week blood was drawn to test for several viruses-- all were negative. His platelets and white blood counts had been trending down, but that has reversed itself as well, so only good news. He continues to get stronger and is riding his stationary bike again. He might return to out-patient PT when our weekly trips to Ann Arbor are done.
We were concerned about yesterday's snowstorm so left early for AA. It did not snow here, but we had a few inches at home. It will be nice to start having temps above freezing...even the 40s. Spring fever!!
We were concerned about yesterday's snowstorm so left early for AA. It did not snow here, but we had a few inches at home. It will be nice to start having temps above freezing...even the 40s. Spring fever!!
Sunday, March 3, 2013
In Like a Lion...
It is winter in Michigan! The sustained freezing temps and snow cover are as much as we have had all winter. Go figure. Ron's brother came and cut down a red oak that was broken, had an odd shape, and leaned towards where we dock the pontoon boat in the summer. It opens up our view and greatly relieves my mind to have it cut. It was amazingly solid though for the most part. I was a little sore from hauling and piling up the small stuff. It was a large tree..amazing energy and work by Rick.
Our big event yesterday was having our new Amish-made bed frame delivered. We love it. Today we did our big grocery shopping at Meijer in Coldwater and went out for lunch. Now I am pretty much just melted into my recliner. I am sure there will be some college basketball in my near future..or maybe a nap before the Michigan State vs Michigan game.
Ron continues to gain strength after his hospitalization for pneumonia. It was a scary time with the need for oxygen, two days in ICU, and lung cultures showing that his lung infection was MRSA staph. Amazing where you can sleep when there is no way you're leaving the hospital! The ECP light therapy is in its 4th week, and its purpose is to balance the immunity, so the donor cells do not cause so much havoc with GVHD. At the same time, Ron should need less steroids which have their own side effects...the main one making him more susceptible to infection. The other battle at this point is keeping his blood sugar under control with diet, fast acting insulin, and long acting insulin. Blood sugar needs to be controlled for your general system health and its potential for feeding bacteria in an immunosuppressed state. I am feeling more comfortable with my role in monitoring blood sugar and dosing insulin injections.
Next week we have two days in Ann Arbor again. This will be the pattern for March.
Love to all,
Ron & JAN
Our big event yesterday was having our new Amish-made bed frame delivered. We love it. Today we did our big grocery shopping at Meijer in Coldwater and went out for lunch. Now I am pretty much just melted into my recliner. I am sure there will be some college basketball in my near future..or maybe a nap before the Michigan State vs Michigan game.
Ron continues to gain strength after his hospitalization for pneumonia. It was a scary time with the need for oxygen, two days in ICU, and lung cultures showing that his lung infection was MRSA staph. Amazing where you can sleep when there is no way you're leaving the hospital! The ECP light therapy is in its 4th week, and its purpose is to balance the immunity, so the donor cells do not cause so much havoc with GVHD. At the same time, Ron should need less steroids which have their own side effects...the main one making him more susceptible to infection. The other battle at this point is keeping his blood sugar under control with diet, fast acting insulin, and long acting insulin. Blood sugar needs to be controlled for your general system health and its potential for feeding bacteria in an immunosuppressed state. I am feeling more comfortable with my role in monitoring blood sugar and dosing insulin injections.
Next week we have two days in Ann Arbor again. This will be the pattern for March.
Love to all,
Ron & JAN
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