Update on my sister

Discussion in 'The Watercooler' started by Marguerite, Apr 4, 2010.

  1. Marguerite

    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.

  2. Wiped Out

    Wiped Out Well-Known Member Staff Member

    So glad to hear she is improving. I've been praying daily and will continue to pray that she continues to improve. She sounds like she has a very positive attitude which I think can only help.
  3. Hound dog

    Hound dog Nana's are Beautiful


    What a truly wonderful update!! Your sis is such a fighter! She has come such a really long way in such a short period of time. :D

    I know docs have to be realistic and honest about the odds. But there is always those unusual patients who don't follow what they say in textbooks and seem to write their own progress. My kidney disease should have progressed much faster than it has, but here I sit replying to your post with many more years under my belt than docs ever dreamed possible. (and some still have issues with it lol)

    So there is always hope, especially with as well as she's doing at the present time. And if not, then any strength she gains now will improve her odds for a successful transplant.

    She is in my prayers nightly. That's for the update. I was wondering how she was doing.

  4. KTMom91

    KTMom91 Well-Known Member

    What wonderful news! I'm so glad she's improving.
  5. gcvmom

    gcvmom Here we go again!

    I'm continuing to hold onto hope that there will be a positive outcome for her, one way or the other. She certainly sounds like a fighter -- I can see she's influenced you a bit, too!
  6. susiestar

    susiestar Roll With It

    What wonderful news!!! Thank you for letting us know.
  7. trinityroyal

    trinityroyal Well-Known Member

    What wonderful news. I am continuing to keep your sister in my thoughts and prayers.
  8. DaisyFace

    DaisyFace Love me...Love me not


    What good news! It sounds as though your sister is doing mcuh better than the doctors expected--plenty of reason to hope for a full recovery.

    I will keep both of you (and your family) in my prayers...
  9. Star*

    Star* call 911........call 911


    I'm glad to hear she's still on the mend. As far as the lung transplant - what are her chances of finding a match for a donor?
  10. Suz

    Suz (the future) MRS. GERE

    All things considered, this is great, Marg!

  11. klmno

    klmno Active Member

    Wow- this is great given how bad it seemed there for a while! I hope the progress continues- and that are still taking care of yourself thru this and doing well, too!
  12. timer lady

    timer lady Queen of Hearts

    Marg, thanks for sharing this very positive update on J. I've been told that the better the attitude the better the outcome...at least for the short term given the diagnosis.

    Continuing to keep J & the entire family of yours in my prayers.
  13. everywoman

    everywoman Active Member

    Great news Marge.
  14. Marguerite

    Marguerite Active Member

    I'm hoping this doesn't have to go to lung transplant, because although she would be a good candidate, Australia has a lower rate of organ donation than we should have. It's mostly administrative, i think - it's not made easy enough for people to donate organs, plus there's not enough good communication. Organs here are donated, there is no payment to anyone. So we have no black market in organs either. While this is good in one respect, it does mean that all the pressure is on the organ donor system.

    We do get some desperate people on the waiting list (usually for kidneys, etc) who go overseas to buy an organ and get transplanted there. It's frowned upon. It also doesn't apply to lungs.

    Compared to many other countries, we have a smaller population pool from which to draw, for organs. Thankfully her blood group isn't a rare one.

    But here's hoping we can stay away from that possibility.

  15. TerryJ2

    TerryJ2 Well-Known Member

    Thank you!

    Your sister has been through so much ... and she sounds like she has your pluck. :)

    And how are *you* doing after your surgery and everything these days?
  16. Marguerite

    Marguerite Active Member

    I'm doing OK at the moment. The radiotherapy hasn't started yet, I've got over a month to go for even the first "let's measure you up" appointment. A little nerve wracking, because one of the reported (although rare) side effects of radiotherapy, is respiratory fibrosis. But I figure, if that happens the doctors will be onto it fairly fast, plus it's only going to be one lung, I shouldn't go through what J has been through.

    But the radiotherapy schedule is looking like interfering with a stage production I had my name down for. I've been assured that I should get through radiotherapy OK, most people keep working right through it all, so I should be able to manage a stage performance schedule, I figure. However, there have been problems with the production, some politics getting nasty and I'm trying to void getting caught up in it any further than I already have. I need to post separately about this but I don't want to risk someone tracking the information and finding what I'm saying (I'm still trying to keep the left hand from knowing what the right is doing).

    I probably should drop out if it's going to be controversial, but I have always found being involved in this sort of thing to be good therapy. I just have to duck and cover from the politics.