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you are very welcome , I’m pleased it helps , I wish I had know about the forum before , it helps a lot talking to people who have gone through it .
so sorry to hear about you’re son , it’s a very hard time for you, hopefully you are turning a corner
how’s things going , hope all is ok
just thought I’d give you an update on my daughter’s health.
She is still in hospital and has been having a pretty rough time. The chest infection is very slowly showing some improvement. She has a bladder virus - the BK virus which is causing a lot of trouble as she has a catheter which is uncomfortable . She is very weak as she has not been on her feet for so long. She’s now been in hospital about 15 weeks . Her mood, which is usually good , is very down. No wonder ! I wish I could say or do something to help. Along with her partner, I’m allowed in whenever I like which is great. She’s starting on a new trial for the BK virus tomorrow and I so hope that she gets the real thing and not the placebo.
Im wondering if you or anyone else was as weak ( no appetite ) for so long and managed to get home and function again?
Thank you for all the support and I hope that you, Michelle , and anyone else reading this is doing well.
i spent 7 months in hospital during lockdown , I couldn’t have any visitors , things were touch and go a few times
I couldn’t eat I lost so much weight ,was given a feeding Tube had time in intensive care
can’t remember all of it , there were times I didn’t think I would come through it , but here I am 2 years post transplant , it’s very hard , I take each day as it comes & enjoy , I’m no where near the person I was before , I’m a totally new person with a new way of life
I have a wonderful team of doctors and nurses that have looked after me and still do , try and keep strong and have faith
Thank you so much for your encouraging words, Michelle and for sharing some if your journey. It really helps me to know that through all the adversary, you are enjoying life, albeit a different life than before.
i will let you know how my daughter gets on with the trial.
im so glad that you are in the hands of fantastic doctors and nurses. My daughter is also very fortunate in this respect.
hope all goes well with the trail ,
Hi Audrey, thanks for the update on your daughter. Your daughter sounds very much like me after my transplant. I had no appetite for a really long time and it made me really weak.. I'd spent so long in bed that I lost the muscle and strength in my legs, and my lack of appetite made things worse as I was not getting enough nourishment. At one point I couldn't stand up long enough to get weighed each day! The virus she has won't be helping either.
I hope her blood counts are still climbing though which should give her some encouragement that things are going in the right direction.
Please keep us updated.
sounds like we’ve all been through the same , we are in a very special club the survivor’ s
give you’re daughter our best wishes
Hi and thank you both so much for taking the time to reply and share some of the very rough times that you had . It is wonderful to hear how much you have come on from those dark days .
my daughter had the first cell infusion ( from the trial ) today. She has been very exhausted and tired all day. I’m hoping that she will get a reasonable sleep and perhaps be a bit brighter tomorrow.
I am so glad that I can visit her . It’s quite a long drive 3 times a week but very worth it.
Your encouragement is really helping.
ps - I have been telling my daughter about our conversations .
you’re very welcome , I hope it helps you and your daughter , let’s hope for better news
Hi Audrey. My daughter has relapsed since her SCT 4 months ago and is due to have some donor cells again this week. She had BK virus for several weeks and also on the trial. Unfortunately she has then got another infection as well but hope is more treatable. Like you I am so worried and it is good to share information although every case is so different. I was so shocked to read of you losing your son recently too and can’t imagine ….
So good to hear from others who have been through similar situations too. I live two hours from my daughter wish I was closer.
Just sending love and strength to you as one mum to another and hope your daughter gains strength and improves soon.
Thank you so much for replying to my text and I am so sorry that your daughter is going through such a rough time and that you too have so much worry.
it’s been about 3 months since my daughter’s SCT and it’s been such a worrying journey.
Has your daughter recovered from the BK virus or is she still fighting it? My daughter is having a lot of problems with the catheter . They’ve changed it to one that is self flushing but it’s still very uncomfortable and is bypassing. She also has a chest infection which we have been told is improving. However, because of severe pain in left side if her chest, they are going to do another ct scan today.
How I wish ( and I’m sure that you do too ) that my daughter is well enough to go home to continue her recovery . She’s so weak and thin. Michelle and Steve have told me that they were the same which is a little reassuring.
my son’s death has devastated the family. He so wanted his sister to get better.
let’s hope that both our daughters turn the corner soon.
Thank you so much for reaching out to me.
Hi audrey & babs
So sorry to hear , you are having a worrying time, keep strong hope you turn a corner soon
I was in the clinic for 8 months, sct july 21. I have chronic gvhd, got over the bowel gvhd ans now skin gvhd. It's a long long recovery process and I've been told I might have to just accept things the way they are.
I was in hospital 8 months right through covid lockdown I have dry skin and sore mouth and throat , it is something we have to live with and keep taking medication , as I say this is a new way of life now I’m not the person I was before I take each day as it comes
Hi Audrey. She had the BK virus for 11 weeks and then another similar infection. Her markers are minimal now but she still has stinging cystitis and is up frequently in the night. She is having more donor cells and a bone marrow biopsy today. She did have treatment probably the same as your daughter via the catheter which unfortunately did not help. My daughter has CML so treatments may be different.
Hoping your daughter gets through her infections quickly and can start to get stronger.
Sending best wishes to you all ****
Hi Babs. I hope that your daughter is making progress and that the additional donor cells have helped to improve her bladder issues.
my daughter is still in hospital( over 4 months now). It’s a very bumpy journey. They are removing the catheter with the flushing system tomorrow. Not sure how that will go. Her chest infection has improved . It’s the bladder problems that are keeping her hospitalised. She had a feeding tube inserted as she has lost so much weight but unfortunately she was really sick and brought the tube up!
I really hope that your daughter is doing a bit better and perhaps home by now. All we can do is keep supporting them until they turn the corner.
sending best wishes to everyone who is battling their illness and to their loved ones.
I was just thinking about you all yesterday , I did exactly the same with my feeding tube , when I went into icu they put a longer one in ,it is a very bumpy road and a lots of ups and downs , keep strong , best wishes to you all
Thank you, Michelle. My daughter now has a temperature and feeling really nauseous and poorly. When one thing seems to be improving slightly , something else happens. I’m so worried and hate seeing her like this.
i hope that you are still doing well.
Hello Audrey, keep hanging on. I'm sending compassion and love.
keep strong , I’m sending my love and best wishes , I was exactly the same , you think things aren’t going to get better , but it does , it is a worrying time I’m not too bad take one day at a time it’s weird not going for check ups all the time , I miss them all at the hospital
keep strong and keep in touch
Thank you, Helen and Michelle for your support and kind texts .
Today my daughter has been very poorly with a very high temperature. She had another ct scan and her bowel is infected . The catheter was removed and bladder seems a bit better . Now it’s the bowel.
she’s so uncomplaining and a fighter . Hearing how people here have gone through this roller coaster journey and come out the other end is keeping me going.
My daughter’s temperature was at 39.8 when I visited today. It’s now at 37.4! I’m hoping that she feels a little better tomorrow. She has a wonderful team looking after her.
Michelle, it’s wonderful to hear that you don’t have to have so many check ups although I can understand how you will miss your medical friends at the hospital.
sending love and encouragement to everyone who is fighting this illness or who has a loved one fighting it.
good to hear her temp is coming down , we have a wonderful nhs , we wouldn’t be here otherwise and this wonderful charity , hope it’s going to be a better day today give her our best wishes
Hi Audrey, Hope your daughters bowel symptoms are improving. She is having a rough ride, she sounds like my daughter in that she is a fighter and uncomplaining. I know that they are also strong for us and family too. My daughter is doing well thankfully. The virus/infection of bladder have resolved (taken a long time) although she has spasms and wonders if there has been some trauma to urethra which needs to heal. She is eating reasonably well now and looking better. She also had a bad time following chemo with her bowel which stopped working completely for a while. That is 5 months ago now and she is due to have an endoscopy next week to check it. Keep letting us know how your daughter is progressing. Sending best wishes to you all x
Hi Audrey, my bowel gvhd was 4th grade and lasted about a year and is thankfully over ( check out lactose intolerance too). I now have mouth, eyes, liver and skin reacting against my sponsors stem cells. But A wonderful bit of news, I woke this morning and could move my mouth, its actually got moisture in it for the first time in months. You can tell from my story that the time scale of these developments is phenomenal. Self compassion video from kristin neff helped and a trust in love on a spiritual level helped too. 8 months lying in hospital, thank goodness I wasn't really present for a lot of it.
Pleased to hear things are starting to look up , we have all been through a lot , I can’t remember a lot of what went on , I was in hospital 8 months spells in icu which I can’t recall I can’t think of how many close calls I had but with love and great support and trust in my team of dr and professors wonderful nurses and family I’ve come through , I hope everyone does the same .
Hi Michelleann, thank you so very much for sharing. We're still here! Carpe diem as they say. I'm blessed with so very much, medical team, family, supportive friends. Still struggling on. The hardest days are those round my fortnightly ecp treatment, it makes me depressed but then I come round again.
8 months in the clinic too! ... we could start a club LOL.
yeah we are still and I’m so blessed , it is a struggle , we should start a club lol
Hello and firstly, Babs, I am so pleased to hear that your daughter seems to have turned a corner and is doing much better . That’s wonderful news!
Helen, it sounds as if you have had and are still having a rough journey. Good news about your mouth being a bit better this morning and I really hope that this continues . The consultant says that the inflamed bowel could be gvhd or could be caused by her picc line ( which they’ve changed ). Everyone on here, including yourself , is giving me faith that my daughter can get through this. She is usually so strong but today she was in tears . She is lacking in sleep and so fed up of always been hooked onto something and being stuck in the same room for months. I know that you can all relate .
Thank you all for sharing your stories . It really helps and gives me faith that my daughter can beat this and get home to her loved ones .