Eric had an allergic reaction to the first dose of ATG. While not unexpected, it's always panicky. The stopped the drip for a while until symptoms subsided and his breathing was normal again. Although he's still feverish and having some chills, they are under control. And he has the full attention of all the nursing staff now.
Hopefully, it's only the first day that the reaction will leave him feeling so miserable.
Showing posts with label allo transplant. Show all posts
Showing posts with label allo transplant. Show all posts
Thursday, 16 July 2009
Sunday, 10 May 2009
Enjoying Life
Moved into new apartment with cute girlfriend, started summer semester, practicing swing at driving range, golfing, camping... That's Eric's life 5 months post transplant. We are amazed and grateful and enjoying life.
Sometimes this past year seems completely surreal. An anonymous donor stepped up and saved Eric's life - twice. A skillful and caring BMT team never stopped trying and never let us down. Over a hundred days in the hospital, countless blood and platelet transfusions (thank you to all those donors too), endless blood draws, chemo, chemo and more chemo.... And we have our miracle.
A great story in today's Ottawa Sun relates how another anonymous group of strangers makes sure that bone marrow transplants work.
Have Marrow, Will Travel
I wonder who made sure that Eric's new marrow arrived safe and sound?
Happy Mother's Day to all the Moms out there. Enjoy every day - make it all count!
Sometimes this past year seems completely surreal. An anonymous donor stepped up and saved Eric's life - twice. A skillful and caring BMT team never stopped trying and never let us down. Over a hundred days in the hospital, countless blood and platelet transfusions (thank you to all those donors too), endless blood draws, chemo, chemo and more chemo.... And we have our miracle.
A great story in today's Ottawa Sun relates how another anonymous group of strangers makes sure that bone marrow transplants work.
Have Marrow, Will Travel
I wonder who made sure that Eric's new marrow arrived safe and sound?
Happy Mother's Day to all the Moms out there. Enjoy every day - make it all count!
Sunday, 30 November 2008
Hola!
Shelley and Dave are married and it was a wonderful week in Punta Cana - sun, sand and family. It was a nice relaxing week for Cor and I. But we all missed Eric and Morgan terribly. I can't wait to plan a family vacation for all of us. A week away and I am fully charged and ready to help Eric through the next transplant. Yes, transplant #2 is scheduled.
Last Wednesday we found out that our wonderful donor has agreed to donate again (marrow, so this means surgery for her/him). I now fully understand the need for anonymity - how could I ever begin to repay this person for their generosity - not just once but twice. To all of you who have been able to join the bone marrow donor registry, please accept my grateful and humble thanks - any of you could be saving someone's life.
So Eric started conditioning chemo on Saturday and the transplant is scheduled for Thursday. This round of chemo will be milder (I guess there is not much to kill off) and will be augmented with Campath. As I understand it (and I haven't talked to the doctors yet), this drug will help to reduce the T cells. I also think this drug will eliminate the need for plasma pharesis (which Eric hated).
He'll also be inpatient for this transplant because he has so recently experienced fevers (no infection found despite a robust series of tests). While the outpatient transplant option is great and I feel that it worked well for Eric in August, I think we are both relieved to be inpatient this time. As well as the recent fevers and the fact that this is a second transplant in 4 months, the winter season is here and a snow or ice storm could make a daily commute to the hospital close to impossible. This combination of risks cannot be ignored or mitigated.
As always, your prayers, positive thoughts and blog comments are truly appreciated and welcome.
Tuesday, 16 September 2008
Day 39 - Grateful for Little Frustrations...
Ever have a bad day? I guess most of us have had days like the one Eric and I just had. It was full of frustrations and ended without any of our "issues" being resolved.
Today Eric was scheduled for his first post transplant follow up in 'MOD L'. From here on, all Eric's appointments will be with the BMT team in the BMT clinic. In Ottawa, everyone who needs to see a hematologist knows about MOD L.
To start off, the scheduler did not have Eric's info and no appointment had been booked. That was an easy fix - they squeezed him in at 11am. Arriving at 11, we realized how hard they had to squeeze to fit us in.... The waiting area was a sea of masked BMT patients (they are easy to spot!). We settled in for a long wait and finally got into a room at 12:45. It didn't take a rocket scientist to realize that everyone had waited equally long and that the admins, coordinators and doctors weren't going to see a lunch break. So that little irritation was quickly squelched.
Eric has been plagued with a sore stomach... No one has really been able to figure out what's wrong so today, our goal was to tackle two issues -- see what we can do about the sore gut (that is impacting eating and exercise) and get prescriptions filled. The doctor could easily locate the pain but wanted to see what was going on. If we could get to the ultrasound unit immediately, they would do a scan and send the report back with us. WOW -- gotta love when things work out like that. An hour later scan done and report in hand, we head back to MOD L to find another full waiting area. Made sure they knew that Eric was really continuing his 11am appointment and they got us back in within 20 minutes.
The ultrasound didn't shed any light on the sore gut... A slightly enlarged spleen and liver were expected (remember his blood system is working miracles right now). In good news, there were no signs of fungal infection and all bile ducts looked good. That eliminates two of the most concerning possibilities. But it left us with no idea why his stomach hurts.
On to prescriptions. After several trips back and forth between MOD L and the pharmacy, I gave up! Several approvals are needed to fill his prescriptions under his insurance and they had not been filed. The BMT pharmacist will work to clear this up tomorrow. I have learned that sometimes waiting for the right people is the best solution - even if it takes another day.
By now it's end of day. I am trying to start back to work this week so headed back to the office to retrieve my laptop and briefcase (we expected a 1 hour appointment) then fought rush hour traffic to get Eric home and head back to Morrisburg. Morgan had already had to leave mid afternoon to make it to work.
I get to go back tomorrow to get the prescription challenge sorted and we both go back Friday for a follow up on the sore belly.
And while we all hope that our upcoming twice weekly appointments are less frustrating and more goal oriented (not to mention shorter)... tonight I have to stop myself and be grateful that Eric is here with us. That he has been to hell and back and still smiles. And that he has come through a risky transplant safely.
If I have to have frustrating days, I am sure glad I get to spend them with Eric and the rest of my wonderfully supportive family and friends.
Today Eric was scheduled for his first post transplant follow up in 'MOD L'. From here on, all Eric's appointments will be with the BMT team in the BMT clinic. In Ottawa, everyone who needs to see a hematologist knows about MOD L.
To start off, the scheduler did not have Eric's info and no appointment had been booked. That was an easy fix - they squeezed him in at 11am. Arriving at 11, we realized how hard they had to squeeze to fit us in.... The waiting area was a sea of masked BMT patients (they are easy to spot!). We settled in for a long wait and finally got into a room at 12:45. It didn't take a rocket scientist to realize that everyone had waited equally long and that the admins, coordinators and doctors weren't going to see a lunch break. So that little irritation was quickly squelched.
Eric has been plagued with a sore stomach... No one has really been able to figure out what's wrong so today, our goal was to tackle two issues -- see what we can do about the sore gut (that is impacting eating and exercise) and get prescriptions filled. The doctor could easily locate the pain but wanted to see what was going on. If we could get to the ultrasound unit immediately, they would do a scan and send the report back with us. WOW -- gotta love when things work out like that. An hour later scan done and report in hand, we head back to MOD L to find another full waiting area. Made sure they knew that Eric was really continuing his 11am appointment and they got us back in within 20 minutes.
The ultrasound didn't shed any light on the sore gut... A slightly enlarged spleen and liver were expected (remember his blood system is working miracles right now). In good news, there were no signs of fungal infection and all bile ducts looked good. That eliminates two of the most concerning possibilities. But it left us with no idea why his stomach hurts.
On to prescriptions. After several trips back and forth between MOD L and the pharmacy, I gave up! Several approvals are needed to fill his prescriptions under his insurance and they had not been filed. The BMT pharmacist will work to clear this up tomorrow. I have learned that sometimes waiting for the right people is the best solution - even if it takes another day.
By now it's end of day. I am trying to start back to work this week so headed back to the office to retrieve my laptop and briefcase (we expected a 1 hour appointment) then fought rush hour traffic to get Eric home and head back to Morrisburg. Morgan had already had to leave mid afternoon to make it to work.
I get to go back tomorrow to get the prescription challenge sorted and we both go back Friday for a follow up on the sore belly.
And while we all hope that our upcoming twice weekly appointments are less frustrating and more goal oriented (not to mention shorter)... tonight I have to stop myself and be grateful that Eric is here with us. That he has been to hell and back and still smiles. And that he has come through a risky transplant safely.
If I have to have frustrating days, I am sure glad I get to spend them with Eric and the rest of my wonderfully supportive family and friends.
Sunday, 31 August 2008
Get Me Outa Here!
Hi Everyone,
Sorry for the lack of updates - it's been a bit of a frustrating week. After Eric was admitted to the inpatient BMT ward last week with a fever, the parainfluenza virus that has been making the rounds at the hospital became a serious concern for several BMT patients. Of course any infection or virus is very serious (and potentially fatal) for those with a compromised immune system. As a result of the virus, the BMT program shut down their outpatient clinics and all transplant patients had to be either inpatient or well enough to be completely discharged to the regular weekly clinic follow up program. This change kept Eric in the hospital to complete his IV antibiotics...
I hate the idea that he is stuck in isolation on a ward where we know patients have come down with this virus. The hospital did a major re-organization of the ward to ensure those who were not struck by the virus had every isolation technique in play to avoid exposure. I am really not sure where those with the virus have gone -- but anyone who had any kind of a cough seems to have been moved - hoping that all are okay. Access to the floor has been severely limited (this is already a tightly controlled environment), additional staff brought in, there are enough masks, gloves, gowns and Purell to sink a ship and the tension permeates the entire floor. You get the picture -- it just hasn't been a very pleasant place to be....
They also gave him a dose of IVIG to provide some passive immunity. He had a nasty reaction to the IVIG but recovered fast. We are very grateful that his original fever never seemed to re-occur and no infection was found. Likewise, we are grateful that he has been able to avoid the parainfluenza virus. But, wow -- will we be glad to see the end of the hospital! Expecting he will be outa there tomorrow.
Other than the hospital frustrations, Eric continues to do well. His blood counts are slowly rising (counts rise more slowly when marrow is used rather than peripheral stem cells) and the musositis has resolved itself. Nothing tastes good but he eats and drinks through the day. Tough to get enough calories in (especially with hospital food). It really paid off for him to be in such good shape with extra weight going into the transplant. Waiting to do this transplant was a good plan. I know that this would have been much harder last spring when he was still recuperating from chemo regimens and that infection.
That's it, that's all!
Sorry for the lack of updates - it's been a bit of a frustrating week. After Eric was admitted to the inpatient BMT ward last week with a fever, the parainfluenza virus that has been making the rounds at the hospital became a serious concern for several BMT patients. Of course any infection or virus is very serious (and potentially fatal) for those with a compromised immune system. As a result of the virus, the BMT program shut down their outpatient clinics and all transplant patients had to be either inpatient or well enough to be completely discharged to the regular weekly clinic follow up program. This change kept Eric in the hospital to complete his IV antibiotics...
I hate the idea that he is stuck in isolation on a ward where we know patients have come down with this virus. The hospital did a major re-organization of the ward to ensure those who were not struck by the virus had every isolation technique in play to avoid exposure. I am really not sure where those with the virus have gone -- but anyone who had any kind of a cough seems to have been moved - hoping that all are okay. Access to the floor has been severely limited (this is already a tightly controlled environment), additional staff brought in, there are enough masks, gloves, gowns and Purell to sink a ship and the tension permeates the entire floor. You get the picture -- it just hasn't been a very pleasant place to be....
They also gave him a dose of IVIG to provide some passive immunity. He had a nasty reaction to the IVIG but recovered fast. We are very grateful that his original fever never seemed to re-occur and no infection was found. Likewise, we are grateful that he has been able to avoid the parainfluenza virus. But, wow -- will we be glad to see the end of the hospital! Expecting he will be outa there tomorrow.
Other than the hospital frustrations, Eric continues to do well. His blood counts are slowly rising (counts rise more slowly when marrow is used rather than peripheral stem cells) and the musositis has resolved itself. Nothing tastes good but he eats and drinks through the day. Tough to get enough calories in (especially with hospital food). It really paid off for him to be in such good shape with extra weight going into the transplant. Waiting to do this transplant was a good plan. I know that this would have been much harder last spring when he was still recuperating from chemo regimens and that infection.
That's it, that's all!
Tuesday, 29 July 2008
Day - 9
Eric had his first infusion of conditioning chemo today (Fludarabine 30mg/m2 for you avid Googlers or PubMed afficionados). The purpose of this drug is to clean out his bone marrow and 'make room' for the donor marrow next week. This drug is not expected to have too many nasty side effects but Eric has a good supply of drugs to help counteract any minor nausea. Of course, any minor nausea could also be caused by the lunch at McDonalds.
As we expected, the chemo was quick but the paperwork was long and painful. The idea is that by completing all the admission work today, it will be quicker and simpler when/if Eric needs to stay as an overnight inpatient. I know Eric would love to complete this transplant outpatient, but Mom is sure glad there is a contingency plan in place...
That's it for today - may the next 6 weeks be similarly boring!
As we expected, the chemo was quick but the paperwork was long and painful. The idea is that by completing all the admission work today, it will be quicker and simpler when/if Eric needs to stay as an overnight inpatient. I know Eric would love to complete this transplant outpatient, but Mom is sure glad there is a contingency plan in place...
That's it for today - may the next 6 weeks be similarly boring!
Monday, 5 May 2008
Opening a Window Somewhere?
Have you ever heard the saying, “When God closes a door, he opens a window”? This refers to the belief that whether outcomes be good or bad, another opportunity will present itself.
The bone marrow harvest did not provide adequate stem cells to consider an autologous transplant. After 3 separate attempts to collect stem cells including multiple chemo protocols, hundreds of neupogen injections and finally surgery, we need to close this door and look for a window.
Potential donors are being identified to find the best match for Eric.
As we know more I will update this blog. In the meantime, if you or your family and friends are eligible to join the Bone Marrow Donor Registry, please do so.
In Canada, the registry is OneMatch . Joining is free and it is as simple as a questionaire and cheek swabs -- you don't have to make an appointment or provide a blood sample to join. If I can do it, you can do it too.
In the US, the Thanks Mom campaign is now active. This means you can join the registry between May 5 - May 19 for no cost.
We would be honoured if you would join on Eric's behalf.
The bone marrow harvest did not provide adequate stem cells to consider an autologous transplant. After 3 separate attempts to collect stem cells including multiple chemo protocols, hundreds of neupogen injections and finally surgery, we need to close this door and look for a window.
Potential donors are being identified to find the best match for Eric.
As we know more I will update this blog. In the meantime, if you or your family and friends are eligible to join the Bone Marrow Donor Registry, please do so.
In Canada, the registry is OneMatch . Joining is free and it is as simple as a questionaire and cheek swabs -- you don't have to make an appointment or provide a blood sample to join. If I can do it, you can do it too.
In the US, the Thanks Mom campaign is now active. This means you can join the registry between May 5 - May 19 for no cost.
We would be honoured if you would join on Eric's behalf.
Subscribe to:
Posts (Atom)
