It may be wishful thinking, but I think John's skin looks a little better after his first photopheresis treatment; he has his second treatment tomorrow and more next week on M, W and F. His doctors think he will have at least 3 weeks of treatments. Send good wishes his way; as soon as this works, the steroids can be tapered off and his own new immune system should begin knocking down the CMV.
Depressing blood counts is a side effect of some of his meds. His platelet count today was 14,000. He did have physical therapy but they didn't have him do too much so the chance of falling or bumps would be minimized while his count is that low.
Another side effect of steroids which I don't think we mentioned yet is depressing body temperature. So even if you are fighting off an infection (or trying to), your temperature may not rise above normal body temperatures. Until the steroids can be tapered off, John needs blood cultures every three days to make sure he doesn't have any infections. This is a procedure that is difficult because his veins are scarred and it is painful. Often it takes multiple sticks to get a blood sample and he needs samples from each arm. Just one more reason why it is important for the photopheresis to work and to get off the steroids. This is very frustrating for everyone - the nurses and me included - but most importantly it is frustrating for John and he dreads it.
Tomorrow the badgerettes and their families are coming for a couple of days; we can't wait to see them.
Thursday, December 27, 2012
Tuesday, December 25, 2012
12/25
Merry Christmas, Everyone. We are celebrating here in our temporary burrow at Thomas Jefferson University Hospital in Philadelphia in between winter storms. It is a White Christmas in eastern PA.
After our walk we had a little gift exchange and John got something he wanted more than almost anything else right now - a clementine and a perfectly ripe pear (thanks Bob and Sue!) Neutropenic diet restrictions have changed. According the the head of the transplant unit, published research shows well washed, peeled fresh fruit is fine although John can't keep it in his room or peel it himself. A very nice Christmas morning. We'll continue our gastronomic Christmas with a Pu Pu platter this afternoon. John's medical staff approves it and Philaelphia's Chinatown is only a couple of blocks away.
The catheter was inserted in John's neck and the skin biopsy was performed without any problems yesterday. The rash is pretty pronounced today. The results of the skin biopsy will show if it is gvhd (which is the most likely cause). Photopheresis begins tomorrow and has a good track record of being an effective treatment against gvhd. CMV numbers are still on the rise so as soon as the photopheresis impacts the gvhd, the steroids can be tapered off some more and John's own lymphocytes can begin to knock down the CMV. Keep your fingers crossed and say a prayer for us.
The blood counts are falling again so that probably means more transfusions soon. For our medical friends, the wbc are 1.8, hemoglobin 9.5, platelets 40,000.
John's doc cautions to restrict contact during the viral season which is intense this year; she says viruses can aggravate gvhd. Isolation isn't difficult right now on the bone marrow transplant unit but the season extends until April. Have a wonderful Christmas however you celebrate. We are thinking of all of you.
After our walk we had a little gift exchange and John got something he wanted more than almost anything else right now - a clementine and a perfectly ripe pear (thanks Bob and Sue!) Neutropenic diet restrictions have changed. According the the head of the transplant unit, published research shows well washed, peeled fresh fruit is fine although John can't keep it in his room or peel it himself. A very nice Christmas morning. We'll continue our gastronomic Christmas with a Pu Pu platter this afternoon. John's medical staff approves it and Philaelphia's Chinatown is only a couple of blocks away.
The catheter was inserted in John's neck and the skin biopsy was performed without any problems yesterday. The rash is pretty pronounced today. The results of the skin biopsy will show if it is gvhd (which is the most likely cause). Photopheresis begins tomorrow and has a good track record of being an effective treatment against gvhd. CMV numbers are still on the rise so as soon as the photopheresis impacts the gvhd, the steroids can be tapered off some more and John's own lymphocytes can begin to knock down the CMV. Keep your fingers crossed and say a prayer for us.
The blood counts are falling again so that probably means more transfusions soon. For our medical friends, the wbc are 1.8, hemoglobin 9.5, platelets 40,000.
John's doc cautions to restrict contact during the viral season which is intense this year; she says viruses can aggravate gvhd. Isolation isn't difficult right now on the bone marrow transplant unit but the season extends until April. Have a wonderful Christmas however you celebrate. We are thinking of all of you.
Sunday, December 23, 2012
12/23
There is a change in the plans for this upcoming week. John is still getting the apheresis catheter inserted tomorrow (Monday) but due to Christmas and short staffing, he will not begin photopheresis until Wednesday. The plan is to receive it M and W this week, then MWF next week and then adjust the number of treatments per week as required by the results. The point of this treatment is to alter the DNA of the T cells produced by the new immune system so it will no longer attack the proteins on John's skin which it recognizes as foreign resulting in gvhd. Since he will be getting photopheresis several times a week, the new T cells produced by the immune system should also be disabled as long as the photopheresis continues. In time, the T cells should "accomodate" John's proteins and stop attacking them but that will take a while. Photopheresis generally lasts at least 3 weeks; we're not sure if that means we have to be in the hospital that whole time or if he will eventually be able to receive this treatment as an out patient.
Once the gvhd is successfully treated, the steroid dose can be tapered off more quickly letting the new immune system work against the CMV. In addition, John is receiving 3 medications which are also part of the CMV treatment.
Tomorrow, John will be getting a skin biopsy to make sure the rash is gvhd. John's doctor thinks that is the most likely cause of the rash but viruses in the CMV family could also be the culprit. Treatment will depend on the biopsy results.
On other fronts, John continues to do super well in PT - walking, weight lifting, stairs, etc. He is hooked up to so many IV meds right now, he has his own personal Christmas tree. The physical therapist told John he never saw an IV stand with so many bags hanging on it; currently there are 5 and even more tubes with different colored clamps everywhere. A strand of lights would complete the decorative effect :)
Blood counts are all seriously down probably as a result of all the meds. He has had a growth stimulating factor to increse the white count and that has improved from neutropenic to 5.6. A transfusion of red cells has improved those numbers from 7 to 9.9. And, he is getting bag after bag of platelets; that count has improved from 12,000 to 28,000 but it has to get up to about 50,000 for tomorrow's surgical procedure.
A final bit of good news is that he has broken the 170 pound mark this week.
Once the gvhd is successfully treated, the steroid dose can be tapered off more quickly letting the new immune system work against the CMV. In addition, John is receiving 3 medications which are also part of the CMV treatment.
Tomorrow, John will be getting a skin biopsy to make sure the rash is gvhd. John's doctor thinks that is the most likely cause of the rash but viruses in the CMV family could also be the culprit. Treatment will depend on the biopsy results.
On other fronts, John continues to do super well in PT - walking, weight lifting, stairs, etc. He is hooked up to so many IV meds right now, he has his own personal Christmas tree. The physical therapist told John he never saw an IV stand with so many bags hanging on it; currently there are 5 and even more tubes with different colored clamps everywhere. A strand of lights would complete the decorative effect :)
Blood counts are all seriously down probably as a result of all the meds. He has had a growth stimulating factor to increse the white count and that has improved from neutropenic to 5.6. A transfusion of red cells has improved those numbers from 7 to 9.9. And, he is getting bag after bag of platelets; that count has improved from 12,000 to 28,000 but it has to get up to about 50,000 for tomorrow's surgical procedure.
A final bit of good news is that he has broken the 170 pound mark this week.
Friday, December 21, 2012
12/21
Some numbers are too low and some are too high. John's platelets fell to 19,000 so he received a platelet transfusion; they were up to 31,000 this morning. We have to get the platelets up to about 50,000 for a surgical procedure John will have Monday morning.
The CMV numbers increased between 5-6 fold which is very concerning. While the numbers are high, John doesn't appear to have an active infection. A combination of three meds will be used to bring the virus numbers down and to protect against an infection of the lungs or gut.
A catheter will be implanted through the jugular vein on Monday morning so John can begin photopheresis which is a treatment used to treat his graft v host disease. John's blood will be removed, separated, treated with a chemical and then exposed to UV light and returned to his body. The UV light activates the treated cells and if all goes well, those cells can no longer attack John's proteins and the gvh disease should greatly diminish. If that happens, the immunosuppressant drug being used to treat the gvhd can be cut back. If the immunosuppressant drug can be reduced, John's new immune system can get the CMV under control. If all goes according to plan, the gvhd and the CMV will both be under control.
The good news is John is feeling well, is doing great in physical therapy, is eating like a champion and is tolerating all of his treatments well. It seems we will be spending Christmas in the hospital this year and our best gift will be for these new treatments to work quickly. If you are from our area of the world, stay safe during the rain/high wind storm this weekend.
The CMV numbers increased between 5-6 fold which is very concerning. While the numbers are high, John doesn't appear to have an active infection. A combination of three meds will be used to bring the virus numbers down and to protect against an infection of the lungs or gut.
A catheter will be implanted through the jugular vein on Monday morning so John can begin photopheresis which is a treatment used to treat his graft v host disease. John's blood will be removed, separated, treated with a chemical and then exposed to UV light and returned to his body. The UV light activates the treated cells and if all goes well, those cells can no longer attack John's proteins and the gvh disease should greatly diminish. If that happens, the immunosuppressant drug being used to treat the gvhd can be cut back. If the immunosuppressant drug can be reduced, John's new immune system can get the CMV under control. If all goes according to plan, the gvhd and the CMV will both be under control.
The good news is John is feeling well, is doing great in physical therapy, is eating like a champion and is tolerating all of his treatments well. It seems we will be spending Christmas in the hospital this year and our best gift will be for these new treatments to work quickly. If you are from our area of the world, stay safe during the rain/high wind storm this weekend.
Wednesday, December 19, 2012
12/19
Yesterday, 12/18, was the 2 month anniversary of John's haplo bone marrow transplant. The marrow is well engrafted - a cause for real celebration. We have high hopes for the 3rd month anniversary on Jan 18; John's doctors say patients often begin feeling remarkably better at about that time.
The up and down pattern continues for now. Blood counts dropped to the point where John needed a transfusion a couple of days ago; wbc are lowish at 3.7 and platelets are very low at 24,000. Hemoglobin holds steady at about 9 since the transfusion. John's weight is up to 167 which is still way too thin but so much better than 157 of a few days ago. In the down category, the virus numbers are dropping, The aggressive twice daily viral IV med schedule continues for the time being. John is walking and exercising more and getting stronger every day.
Thank you for all of the cards, comments, emails, and phone messages. John really enjoys keeping up with all of your news. And most special thanks for your continuing good thoughts and prayers.
The up and down pattern continues for now. Blood counts dropped to the point where John needed a transfusion a couple of days ago; wbc are lowish at 3.7 and platelets are very low at 24,000. Hemoglobin holds steady at about 9 since the transfusion. John's weight is up to 167 which is still way too thin but so much better than 157 of a few days ago. In the down category, the virus numbers are dropping, The aggressive twice daily viral IV med schedule continues for the time being. John is walking and exercising more and getting stronger every day.
Thank you for all of the cards, comments, emails, and phone messages. John really enjoys keeping up with all of your news. And most special thanks for your continuing good thoughts and prayers.
Tuesday, December 18, 2012
12/18
I guess the acronym SNAFU applies to this recovery. For the past few days John's CMV numbers have gone down and up. They're recently up; He's on a new med twice a day instead of once and we're waiting for the most recent results. The weight has gone up and down. Today it has improved from 157 to breaking the 160 mark. The nurses say it will continue to swing as a result of water loss and gain which is due to a couple of the meds John is on. Mood has varied from up and very up to low and pretty low. It is a testimony to John that his ebullient moods are marked by the plans he is making for what he can do for everyone else when he is better and that during his sad times he is most concerned about the plans for others he has not been able to accomplish yet. The steroids are responsible for the mood swings and as they are reduced, he is feeling more level.
Physical therapy has been added to the list of acivities to help him improve and maintain physical conditioning. Appetite has been consistently ravenous the last several days; we look forward to sharing good times and good food with all of you once the recovery and fattening up continue at home :)
Physical therapy has been added to the list of acivities to help him improve and maintain physical conditioning. Appetite has been consistently ravenous the last several days; we look forward to sharing good times and good food with all of you once the recovery and fattening up continue at home :)
Saturday, December 15, 2012
12/15
As a pre-Christmas gift to all of us - John's friends and family - I'm happy to share that John ;is feeling better, eating
better (he sent me to the diner this morning for 2 milkshakes - one vanilla and
one chocolate - and french fries), and getting more exercise. He is still shedding but a lot of the dead skin is already gone and the new skin looks good.
He continues to lose weight - he lost 4 more pounds since Thursday. The new target date for discharge is this Friday, 12/21. Even if he gets out Friday, he will need to go to the infusion center at Lehigh Valley Hospital every day to get an IV of the med he needs for the continuing CMV infection.
postscript: maybe the milkshake wasn't such a good idea... John's pm blood sugar is 411; he got 5 units of insulin. The steroids continue to mess with his blood counts: wbc 3.6, hemoglobin 8.3, platelets 26,000.
post postscript: John is just amazed by the incredible skill and care of and by everyone at Jefferson - the nurses, doctors, and all of the staff. We both are. This is a super hospital!
He continues to lose weight - he lost 4 more pounds since Thursday. The new target date for discharge is this Friday, 12/21. Even if he gets out Friday, he will need to go to the infusion center at Lehigh Valley Hospital every day to get an IV of the med he needs for the continuing CMV infection.
postscript: maybe the milkshake wasn't such a good idea... John's pm blood sugar is 411; he got 5 units of insulin. The steroids continue to mess with his blood counts: wbc 3.6, hemoglobin 8.3, platelets 26,000.
post postscript: John is just amazed by the incredible skill and care of and by everyone at Jefferson - the nurses, doctors, and all of the staff. We both are. This is a super hospital!
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