Another biopsy is done. It was a 1R. That is good but not fantastic. A 1R means the rejection is better but not completely gone. So the steroids are lowered slowly. Poor Scott and those steroids. It's much better than losing heart function though.
I feel like we're in the middle of the H1N1 panic. It's bad enough when everyone is healthy but when I live with an immune- suppressed person I'm much more edgy. Most of my life I've been pretty easy-going about my family's health, vaccines, doctor's appointments etc. Now, after what I've seen this last year of ICUs, breathing tubes, septic infections, surgeries, and near-death experiences I will do nearly ANYTHING to avoid them - especially a little poke in the arm for my family.
Yesterday we lined up for 3 hours for the H1N1 flu shot. It wasn't too bad. My arm hurts a lot though. Can you believe I'm such a wimp!? I've heard of many people with ILI(influenze-like illness) and so far we've been lucky. Hopefully the vaccines will kick in before we're exposed. I don't usually follow all of the media hype but this time I find myself very interested in every statistic and every opinion.
Have I turned into "that person"? The germophobic, self-isolating, overprotective mom/wife? Maybe a little. I have to give myself a little credit though. We're all still alive - and pretty happy. I might be a little neurotic for a few weeks but it's pretty much a result of a stressful, difficult year. At least I still let my kids go to school...most days:)
Friday, October 30, 2009
Thursday, October 15, 2009
Letters to the Donor Family
I've been wanting to blog about a delicate subject: The person and their family who donated so that Scott could have his new heart. I've been reading about other transplant recipient's experiences and I want to share a little about our experience. I want to respect the donor family's privacy by not putting details out publicly but I also want to share what a wonderful experience it has been to communicate.
We have received 3 letters from the donor's mother. I have written 2 letters, Scott has written a letter and the kids have sent notes and pictures. The H.O.P.E. program facilites the exchanges so we don't send or receive things directly.
It is very humbling to hear from this mother who still feels such pain and loss. It is sometimes difficult to know that our extremely positive event came from someone's VERY negative event.
We know that the donor was a young woman. Her mother has shared with us some of her good qualities. We know she loved children, she had a good relationship with her family and was very loved. She was strong and healthy before a sudden, tragic event.
I do know that writing to this family has been positive on both sides. I'm very sorry that this family has experienced so much pain and suffering. We feel connected to someone we don't even know. It has been reconfirmed to us that there are good, kind people out there who give without receiving anything in return - just because they know it will help someone. The donor's mother has told us that the knowledge of her daughter's gift helping our family has brought her "joyful tears" and smiles. She said that our letters have meant a lot to their family and knowing the difference their gift has made does help them.
I'm grateful for the opportunity to communicate with this family. I'm grateful for the letters we've shared. Sometimes I would like to look them in the eye, give them a hug and let them see with their own eyes our family and the difference their gift has made. The laws here don't allow for that so I can be satisfied with the letters.
I hope anyone reading this post will think about organ donation and choose to talk to their family members about their wishes. Organ donation saves lives and families. It has saved ours.
We have received 3 letters from the donor's mother. I have written 2 letters, Scott has written a letter and the kids have sent notes and pictures. The H.O.P.E. program facilites the exchanges so we don't send or receive things directly.
It is very humbling to hear from this mother who still feels such pain and loss. It is sometimes difficult to know that our extremely positive event came from someone's VERY negative event.
We know that the donor was a young woman. Her mother has shared with us some of her good qualities. We know she loved children, she had a good relationship with her family and was very loved. She was strong and healthy before a sudden, tragic event.
I do know that writing to this family has been positive on both sides. I'm very sorry that this family has experienced so much pain and suffering. We feel connected to someone we don't even know. It has been reconfirmed to us that there are good, kind people out there who give without receiving anything in return - just because they know it will help someone. The donor's mother has told us that the knowledge of her daughter's gift helping our family has brought her "joyful tears" and smiles. She said that our letters have meant a lot to their family and knowing the difference their gift has made does help them.
I'm grateful for the opportunity to communicate with this family. I'm grateful for the letters we've shared. Sometimes I would like to look them in the eye, give them a hug and let them see with their own eyes our family and the difference their gift has made. The laws here don't allow for that so I can be satisfied with the letters.
I hope anyone reading this post will think about organ donation and choose to talk to their family members about their wishes. Organ donation saves lives and families. It has saved ours.
Saturday, October 10, 2009
Ups and Downs
The last 3 days have been quite eventful. I know I haven't updated in a long time. That is because things have been going quite well. We met with the nephrologist this week and she said Scott is doing great and she doesn't need to see him at all anymore!! Then Scott had a biopsy and clinic appointment with the transplant team. We discussed Scott going back to work as early as next week part-time! We also discussed Scott finally getting off the prednisone(a steroid) after 8 months. He started with at least 50mg/day and was down to 2.5mg/day. If the biopsy results were good they told us he could go down to ZERO!!!! It was a good appointment.
The next day we took a trip to Edmonton. We haven't been there since Scott was transfered back to Calgary over 6 months ago. At that time Scott was barely taking a few steps with a lot of help. He was bloated from his kidney failure. He was still suffering from sleep deprivation and hallucinations. His legs looked like a Halocaust surviver's. His hair had fallen out in places and he stilll had a lot of tubes. In other words he looked pretty bad.
We had the opportunity to see the surgeon, the Berlin Heart doctor, the transplant coordinator, a transplant cardiologist and some of the CvICU staff. They all said they wouldn't have recognized Scott on the street. Thank goodness!! He is a normal, walking, pink, non-bloated regular-hair guy now. It was a great experience to see their smiles and let them know that we appreciate their hard work in keeping Scott alive - because it was hard work!!! We also had a tour of the new units in the new Mazankowski Heart Institute. The new CvICU was SOOO much nicer than the old one. Individual rooms, windows, healing gardens... Oh well, I guess I'm glad we didn't wait an extra 6 months to be able to benefit from the new building.
After that good experience we were able to visit with some family, enjoy time together and attend the temple for the first time together in over a year! We were having a great trip. Then came the bad news. We received the phone call. Biopsy results. Rejection! Not the worst - a 2R. A 3R would be worse. But the dream of ending the prednisone is dashed! Now Scott must take 100mg of prednisone for the next few days then he gets to start the weaning process all over again. We were at 2.5mg!!!! Now the side affects again. Swollen face, pimples, mood swings, bone loss, high blood sugar, etc. etc... I think the weaning process is quicker this time - at least that's what I hope. Now I'm not sure about going back to work. I'm not sure what all of this means. When you get biopsy results late Friday afternoon we just start the new drug regimen and wait until next week for many answers. I do know another biopsy will be scheduled in 3 weeks. Hopefully the rejection is thwarted by the nasty prednisone and life can get back to normal again. But for now the roller coaster continues...
The next day we took a trip to Edmonton. We haven't been there since Scott was transfered back to Calgary over 6 months ago. At that time Scott was barely taking a few steps with a lot of help. He was bloated from his kidney failure. He was still suffering from sleep deprivation and hallucinations. His legs looked like a Halocaust surviver's. His hair had fallen out in places and he stilll had a lot of tubes. In other words he looked pretty bad.
We had the opportunity to see the surgeon, the Berlin Heart doctor, the transplant coordinator, a transplant cardiologist and some of the CvICU staff. They all said they wouldn't have recognized Scott on the street. Thank goodness!! He is a normal, walking, pink, non-bloated regular-hair guy now. It was a great experience to see their smiles and let them know that we appreciate their hard work in keeping Scott alive - because it was hard work!!! We also had a tour of the new units in the new Mazankowski Heart Institute. The new CvICU was SOOO much nicer than the old one. Individual rooms, windows, healing gardens... Oh well, I guess I'm glad we didn't wait an extra 6 months to be able to benefit from the new building.
After that good experience we were able to visit with some family, enjoy time together and attend the temple for the first time together in over a year! We were having a great trip. Then came the bad news. We received the phone call. Biopsy results. Rejection! Not the worst - a 2R. A 3R would be worse. But the dream of ending the prednisone is dashed! Now Scott must take 100mg of prednisone for the next few days then he gets to start the weaning process all over again. We were at 2.5mg!!!! Now the side affects again. Swollen face, pimples, mood swings, bone loss, high blood sugar, etc. etc... I think the weaning process is quicker this time - at least that's what I hope. Now I'm not sure about going back to work. I'm not sure what all of this means. When you get biopsy results late Friday afternoon we just start the new drug regimen and wait until next week for many answers. I do know another biopsy will be scheduled in 3 weeks. Hopefully the rejection is thwarted by the nasty prednisone and life can get back to normal again. But for now the roller coaster continues...
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