You have taught me so much! I have CPTSD, but to have that overlaid with your medical history and transplant sadnesses is beyond the beyond. I hope that in writing you are receiving the support you need and were denied earlier, either by circumstances or intent. You deserve to have your book published and you deserve happiness, a sense of accomplishment, and friends. I hope I can lend support to you too. I hold you in my heart.
I’ve had some struggles with anxiety and panic attacks after having a brain tumor removed. Nothing like what it sounds like you’ve been through, but I can certainly relate to struggling to find help.
The thing I've found that helped me most was participating in support groups of others with similar experiences. I have not yet found a therapist who understands the trauma involved in critical illness, but the people who have gone through it also always do.
I can understand the PTSD with transplants totally. I went through it as a wife of a stem cell transplant recipient. Not only did it totally break my husband, but I'm not sure it has ever really worn off for me. He went through unbelievable torture and complications with an outcome that was eventually fatal, and I had very little support while the whole process was going on. I tried to be his bulldog, as I felt his doctors had very little empathy and didn't listen to us, and I think they made some mistakes along the way. I did have a counselor after the fact, which was very beneficial, but even now I have nightmares of the hospital and the absolute despair I felt being there, while trying to hold down a full time job and run a household. It is important to talk this out with someone who wants to listen, as most people don't care or can't handle the gory and depressing details or can't understand how you feel. I can only imagine the challenges you face with everything you do now, and I know what anti-rejection drugs do to your body and your mind, and how your diet and lifestyle has been changed drastically. I admire your strength and your willingness to work with other transplant recipients, and I hope that someday I might do that, too, as it is a truly life-changing, arduous and fairly horrible process. God bless you, Dawn.
Thanks, Dawn, it was a true nightmare. It’s been a few years now. I decided I was not going to be a sad, old widow, wallowing endlessly in grief, as my late husband was a funny guy, and he would not have wanted to see me moping around for the rest of my life. I did participate in a grief group during my first year of widowhood, which was very helpful, and I met some wonderful people who were going through what I was, and maybe worse. This was also when I started writing poetry. I took a risk on online dating—not sure I would recommend it to everyone, as it also can be a nightmare. However, in the end, after a false start, I think it all worked out. I met a man who is very good to me, tolerates my many quirks, makes me laugh and also writes poetry, so I’m happy. I still have my days, though, and the experience of my late husband’s transplant will always stay with me. I hope I did all I could for him, but I’ll never know.
Carole, I'm so sorry about your husband. It sounds like you both suffered a great deal. I'm sure having you by his side helped to make his burden a little easier to bear. But caregivers are often overlooked and have no one to help them with the burden of their own. I'm glad you found the counselor to be beneficial. Have you thought about seeking out a support group for widows? I don't know if there are specific groups for widows after transplant, but there should be. I know several women who have lost their husbands after transplant - some quickly and others after a number of years. They all have mourned then reclaimed their lives, always carrying the memory of their love. I wish continued healing for you.
Dear Dawn,
You have taught me so much! I have CPTSD, but to have that overlaid with your medical history and transplant sadnesses is beyond the beyond. I hope that in writing you are receiving the support you need and were denied earlier, either by circumstances or intent. You deserve to have your book published and you deserve happiness, a sense of accomplishment, and friends. I hope I can lend support to you too. I hold you in my heart.
Thanks for this powerful and vulnerable post.
Thank you for reading!
I’ve had some struggles with anxiety and panic attacks after having a brain tumor removed. Nothing like what it sounds like you’ve been through, but I can certainly relate to struggling to find help.
The thing I've found that helped me most was participating in support groups of others with similar experiences. I have not yet found a therapist who understands the trauma involved in critical illness, but the people who have gone through it also always do.
I can understand the PTSD with transplants totally. I went through it as a wife of a stem cell transplant recipient. Not only did it totally break my husband, but I'm not sure it has ever really worn off for me. He went through unbelievable torture and complications with an outcome that was eventually fatal, and I had very little support while the whole process was going on. I tried to be his bulldog, as I felt his doctors had very little empathy and didn't listen to us, and I think they made some mistakes along the way. I did have a counselor after the fact, which was very beneficial, but even now I have nightmares of the hospital and the absolute despair I felt being there, while trying to hold down a full time job and run a household. It is important to talk this out with someone who wants to listen, as most people don't care or can't handle the gory and depressing details or can't understand how you feel. I can only imagine the challenges you face with everything you do now, and I know what anti-rejection drugs do to your body and your mind, and how your diet and lifestyle has been changed drastically. I admire your strength and your willingness to work with other transplant recipients, and I hope that someday I might do that, too, as it is a truly life-changing, arduous and fairly horrible process. God bless you, Dawn.
Thanks, Dawn, it was a true nightmare. It’s been a few years now. I decided I was not going to be a sad, old widow, wallowing endlessly in grief, as my late husband was a funny guy, and he would not have wanted to see me moping around for the rest of my life. I did participate in a grief group during my first year of widowhood, which was very helpful, and I met some wonderful people who were going through what I was, and maybe worse. This was also when I started writing poetry. I took a risk on online dating—not sure I would recommend it to everyone, as it also can be a nightmare. However, in the end, after a false start, I think it all worked out. I met a man who is very good to me, tolerates my many quirks, makes me laugh and also writes poetry, so I’m happy. I still have my days, though, and the experience of my late husband’s transplant will always stay with me. I hope I did all I could for him, but I’ll never know.
Carole, I'm so sorry about your husband. It sounds like you both suffered a great deal. I'm sure having you by his side helped to make his burden a little easier to bear. But caregivers are often overlooked and have no one to help them with the burden of their own. I'm glad you found the counselor to be beneficial. Have you thought about seeking out a support group for widows? I don't know if there are specific groups for widows after transplant, but there should be. I know several women who have lost their husbands after transplant - some quickly and others after a number of years. They all have mourned then reclaimed their lives, always carrying the memory of their love. I wish continued healing for you.
Dawn