Re: A message from Chris....

[Guest guest]

Hi Bobbi,I think one reason for the extent of the trauma now is that the time on the waiting list was so very short that it didn't allow time to acclimate to the idea of the transplant. Most people prepare themselves mentally for the transplant while on the waiting list, but you and didn't have time for that. So he has to get used to the idea of the transplant after the fact, and as he is healing from surgery.When I had my colectomy in 2000 I was feeling perfectly fine before the surgery. I needed the surgery due to adenomas (polyps with precancerous cell changes). It was incredibly difficult to go through that surgery. For those who are really feeling awful before the surgery, I don't know that they feel quite as traumatized.However, was clearly very sick before his transplant, so maybe this thought of mine is way off base. And maybe he's no more traumatized than any other transplant patient.Marie

To: From: simeonsmommy@...Date: Mon, 9 Mar 2009 00:57:22 +0000Subject: A message from Chris....

He wanted me to tell everyone on this wonderful site how much he appreciates the support you all have given me during this crazy time.

He also wanted me to tell those of you who have not reached the point of transplant yet that it is scary and continues to be scary but it is SO worth it. And also changing your mind set from a person with PSC who is sick to a person who no longer has PSC and is on their way to recovery takes time.

Also, if you need help, don't be afraid to ask. This goes for the patient as well as the caregivers. And if someone offers their help, let them. My inlaws asked me if I wanted them to do our daughter's laundry last night. I said no, that's silly. looked at me and said "they're offering to help. Let them." And our amazing neighbors gave us a recliner tonight. I went to their house to give them a card to thank them for taking care of our cats while was in the hospital. I sat down on their recliner and told them that I wished we'd gotten one because it's hard for to get up and down off of the couch by himself. They said we could have one of theirs! They're moving and were going to get rid of it anyway. So they hoisted it up onto a cart and brought it across the street. They are amazing people and we will miss them terribly when they're gone.

One more thing he wanted me to tell you is that once you have a transplant, there is so much that you go through (being in ICU for example) that emotionally he's not ready to revisit yet. Even though it's a good thing, a life saving thing, it is still VERY traumatic for the patient especially and for the family as well.

Lastly, when you ask for prayers for yourself or your loved one, remember the donor families. They have to lose a loved one so that the rest of us don't have to. And also for those who are sick and waiting. We were extremely fortunate to be at a center that has a very short waiting list. Not every one is so lucky. He also said, make sure you get yourself right with God before. We've both struggled in this area before and this experience has really opened our eyes and our hearts.

He also wanted me to let you all know that when he is feeling better and more like himself, he would be more than happy to share his story or talk to anyone who might be going through the process. He's just not ready yet. But in time he will be. Thank you all for your love and support! We wish you long life and healthy days!

Bobbi &

Windows Live™ Groups: Create an online spot for your favorite groups to meet. Check it out.

[Guest guest]

I know that when had his liver tx everyone who came in the room kept asking if he was scared or nervous. But he'd already been through a double lung tx and had been listed for 11 months so he was more than ready. When he had the lung tx he was just mad 'cuz he'd only been out of hospital for a week after 4 months in was scheduled to go back in 1 week for next ercp so he wanted to wait on lung tx til then - lol. Goofy kid!! AmiSent from my BlackBerry Smartphone provided by AlltelFrom: Marie Nilsson Date: Mon, 9 Mar 2009 00:20:20 -0700To: < >Subject: RE: A message from Chris.... Hi Bobbi,I think one reason for the extent of the trauma now is that the time on the waiting list was so very short that it didn't allow time to acclimate to the idea of the transplant. Most people prepare themselves mentally for the transplant while on the waiting list, but you and didn't have time for that. So he has to get used to the idea of the transplant after the fact, and as he is healing from surgery.When I had my colectomy in 2000 I was feeling perfectly fine before the surgery. I needed the surgery due to adenomas (polyps with precancerous cell changes). It was incredibly difficult to go through that surgery. For those who are really feeling awful before the surgery, I don't know that they feel quite as traumatized.However, was clearly very sick before his transplant, so maybe this thought of mine is way off base. And maybe he's no more traumatized than any other transplant patient.Marie To: From: simeonsmommy (AT) yahoo (DOT) comDate: Mon, 9 Mar 2009 00:57:22 +0000Subject: A message from Chris.... He wanted me to tell everyone on this wonderful site how much he appreciates the support you all have given me during this crazy time. He also wanted me to tell those of you who have not reached the point of transplant yet that it is scary and continues to be scary but it is SO worth it. And also changing your mind set from a person with PSC who is sick to a person who no longer has PSC and is on their way to recovery takes time. Also, if you need help, don't be afraid to ask. This goes for the patient as well as the caregivers. And if someone offers their help, let them. My inlaws asked me if I wanted them to do our daughter's laundry last night. I said no, that's silly. looked at me and said "they're offering to help. Let them." And our amazing neighbors gave us a recliner tonight. I went to their house to give them a card to thank them for taking care of our cats while was in the hospital. I sat down on their recliner and told them that I wished we'd gotten one because it's hard for to get up and down off of the couch by himself. They said we could have one of theirs! They're moving and were going to get rid of it anyway. So they hoisted it up onto a cart and brought it across the street. They are amazing people and we will miss them terribly when they're gone. One more thing he wanted me to tell you is that once you have a transplant, there is so much that you go through (being in ICU for example) that emotionally he's not ready to revisit yet. Even though it's a good thing, a life saving thing, it is still VERY traumatic for the patient especially and for the family as well. Lastly, when you ask for prayers for yourself or your loved one, remember the donor families. They have to lose a loved one so that the rest of us don't have to. And also for those who are sick and waiting. We were extremely fortunate to be at a center that has a very short waiting list. Not every one is so lucky. He also said, make sure you get yourself right with God before. We've both struggled in this area before and this experience has really opened our eyes and our hearts. He also wanted me to let you all know that when he is feeling better and more like himself, he would be more than happy to share his story or talk to anyone who might be going through the process. He's just not ready yet. But in time he will be. Thank you all for your love and support! We wish you long life and healthy days! Bobbi & Windows Live™ Groups: Create an online spot for your favorite groups to meet. Check it out.

[Guest guest]

Over the years I have been here on behalf of my husbnd I have seen lots of posts

from transplanted patients and caregivers. The best advice for anyone is take

advantage of anyone who offers help, it gives a gift that money can't buy and a

bond.

Thanks for keeping us updated and continued recovery spiritual, physical and

emotional.

Fondly,

dee