Marguerite
Active Member
I have good news on my sister J.
To re-cap - J is a few years older than me, she and her twin sister are the next oldest in our large family. She had been feeling a bit breathless since December when she thought she had a cold. In January at her twin's farm, J couldn't manage one lap of the backyard swimming pool without feeling breathless. I didn't know any of this because J is a very private person who will just accept what life dishes out and never complain. When I rang in February to tell J of my breast cancer diagnosis (since it is now something all my sisters have to be aware of) J never told me about her breathlessness, nor that by this stage she was on prednisone to try to reduce inflammation.
It was another of my sisters who told me about J not being well, so when I called her back to let her know that I'd had my surgery on 26 Feb and it had been OK, we had a longer talk about her health.
It was only just over a week after my surgery when I was told that J had gone to hospital, her breathing was so bad. At first they said she would be fine, she just needed extra help breathing and it was probably pneumonia. She's never smoked, she's always done her best to be eat sensibly and exercise. This was a shock.
Then a few days later she was on a ventilator and the doctors were saying she was too weak even for a simple biopsy. They were pouring prednisone into her and said if it didn't work, her only chance was a lung transplant and she was currently too weak.
Anyway, the prednisone seems to have worked. At first it didn't seem to have made a difference, but she has slowly improved. They did several biopsies including an open lung biopsy (she still has a drainage tube in her chest to recover from that one) and finally a diagnosis - not good. Respiratory fibrosis, which is terminal, we have been told. The biopsy results when they came in confirmed that she had a form of respiratory fibrosis called acute interstitial pneumonitis. Terminal.
But I found a couple of research papers which each described a patient who was able to recover even the lost lung function. It was done with prednisone in massive doses. The description of how the patients went, has matched J's progress. We're daring to hope.
We went to see her on Friday (it was Good Friday, we went after church) because she had been off the ventilator for several days and was doing well. She's lost a lot of weight but also lost of lot of the fluid the massive prednisone doses had caused. She also had been on insulin to cope with the diabetogenic effects of prednisone.
So when I saw her - she was sitting in an armchair, looking so much better with her face now having lost a lot of the puffiness. Her hands are no longer puffy although her feet still are. The rest of her - she looks like Kate Moss, I told her. She had a red band of rubbery stuff from the physiotherapist which she was using constantly while we were there (for an hour!) to work her arms and legs, to re-build her muscle.
She's still on oxygen, but on nasal prongs. She needs help to stand up, needs a walking frame with arm support to walk (they have an oxygen bottle on the walking frame) and could only manage a short walk down the corridor, but we were really impressed - a week earlier she had been on a ventilator and only that morning had still been in Intensive Care.
She's determined that she will get well and will come home again. I gather the hospital are still at times a bit negative about her chances - her improvement rate has slowed and if it plateaus off, there is reason to be concerned for her outcome. But while she's improving, she's being as positive as she can be. She'd had her down days of course, especially when the doctors told her that her condition is generally fatal. But I gather patients don't usually have even this amount of improvement after an episode like she's had.
The thing is - if her improvement stops, she has already gained enough ground to make her an excellent candidate for a lung transplant. I haven't said this to her, I'll let the doctors tell her only if they need to. Because although it's good to know a transplant could be an option, it's better if she has the slightest chance, for her to do well with her own lungs, rather than someone else's. I think they're waiting to see how good she can get, before they discuss where to go from here.
Her twin sister came down from the country to visit her over the weekend, that would have been so good for them both. Plus we have another sister, W, who lives a few minutes away from the hospital, she came with me on Friday.
J is still not seeing anyone who isn't immediate family, although that restriction may be relaxed soon. husband did sneak a brief g'day to her, because J walked out to the waiting room to see us off, and husband had been waiting for me in the waiting room. husband also saw her when I first visited her in Intensive Care, he was amazed by how much better she looks now. With no make-up and after all she's been through, she still looks young and beautiful.
So I thought I'd share it all with you. I've told her about all the good wishes from around the world, I'm sure it is giving her strength. I know it is giving me strength.
Thanks, everyone.
Marg
To re-cap - J is a few years older than me, she and her twin sister are the next oldest in our large family. She had been feeling a bit breathless since December when she thought she had a cold. In January at her twin's farm, J couldn't manage one lap of the backyard swimming pool without feeling breathless. I didn't know any of this because J is a very private person who will just accept what life dishes out and never complain. When I rang in February to tell J of my breast cancer diagnosis (since it is now something all my sisters have to be aware of) J never told me about her breathlessness, nor that by this stage she was on prednisone to try to reduce inflammation.
It was another of my sisters who told me about J not being well, so when I called her back to let her know that I'd had my surgery on 26 Feb and it had been OK, we had a longer talk about her health.
It was only just over a week after my surgery when I was told that J had gone to hospital, her breathing was so bad. At first they said she would be fine, she just needed extra help breathing and it was probably pneumonia. She's never smoked, she's always done her best to be eat sensibly and exercise. This was a shock.
Then a few days later she was on a ventilator and the doctors were saying she was too weak even for a simple biopsy. They were pouring prednisone into her and said if it didn't work, her only chance was a lung transplant and she was currently too weak.
Anyway, the prednisone seems to have worked. At first it didn't seem to have made a difference, but she has slowly improved. They did several biopsies including an open lung biopsy (she still has a drainage tube in her chest to recover from that one) and finally a diagnosis - not good. Respiratory fibrosis, which is terminal, we have been told. The biopsy results when they came in confirmed that she had a form of respiratory fibrosis called acute interstitial pneumonitis. Terminal.
But I found a couple of research papers which each described a patient who was able to recover even the lost lung function. It was done with prednisone in massive doses. The description of how the patients went, has matched J's progress. We're daring to hope.
We went to see her on Friday (it was Good Friday, we went after church) because she had been off the ventilator for several days and was doing well. She's lost a lot of weight but also lost of lot of the fluid the massive prednisone doses had caused. She also had been on insulin to cope with the diabetogenic effects of prednisone.
So when I saw her - she was sitting in an armchair, looking so much better with her face now having lost a lot of the puffiness. Her hands are no longer puffy although her feet still are. The rest of her - she looks like Kate Moss, I told her. She had a red band of rubbery stuff from the physiotherapist which she was using constantly while we were there (for an hour!) to work her arms and legs, to re-build her muscle.
She's still on oxygen, but on nasal prongs. She needs help to stand up, needs a walking frame with arm support to walk (they have an oxygen bottle on the walking frame) and could only manage a short walk down the corridor, but we were really impressed - a week earlier she had been on a ventilator and only that morning had still been in Intensive Care.
She's determined that she will get well and will come home again. I gather the hospital are still at times a bit negative about her chances - her improvement rate has slowed and if it plateaus off, there is reason to be concerned for her outcome. But while she's improving, she's being as positive as she can be. She'd had her down days of course, especially when the doctors told her that her condition is generally fatal. But I gather patients don't usually have even this amount of improvement after an episode like she's had.
The thing is - if her improvement stops, she has already gained enough ground to make her an excellent candidate for a lung transplant. I haven't said this to her, I'll let the doctors tell her only if they need to. Because although it's good to know a transplant could be an option, it's better if she has the slightest chance, for her to do well with her own lungs, rather than someone else's. I think they're waiting to see how good she can get, before they discuss where to go from here.
Her twin sister came down from the country to visit her over the weekend, that would have been so good for them both. Plus we have another sister, W, who lives a few minutes away from the hospital, she came with me on Friday.
J is still not seeing anyone who isn't immediate family, although that restriction may be relaxed soon. husband did sneak a brief g'day to her, because J walked out to the waiting room to see us off, and husband had been waiting for me in the waiting room. husband also saw her when I first visited her in Intensive Care, he was amazed by how much better she looks now. With no make-up and after all she's been through, she still looks young and beautiful.
So I thought I'd share it all with you. I've told her about all the good wishes from around the world, I'm sure it is giving her strength. I know it is giving me strength.
Thanks, everyone.
Marg
