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Best Wishes from Audrey
So sorry you’re daughter is back in hospital , I hope she gets home soon , I was exactly the same , I’ve have the virus , borderline hospital the doctor managed with steroids and antibiotics , still had it over a month , nevermind hope you had a lovely Christmas , wish you lots of love and strength , and you’re daughter improves day by day
Thank you so much, Michelle, for your kind message.
Im so sorry that you have had a virus and it has been rumbling on. Are you getting over it now - I really hope so.
When I am with my daughter and see what she is going through in a daily basis with such strength and courage , I have nothing but admiration for yourself and everyone here. I know that every day is a challenge and yet you are all here for others.
Look after yourself and I hope to hear that you are feeling a bit better again soon.
Love and positive thoughts
Hi Audrey, Micheleane, Helen and all. Good to hear most of you are well. Sorry for my quietness as have not really felt up to much. Unfortunately the gvhd has got me down a bit. Unfortunately it seems to be an ongoing struggle with not much upward progression for a long time. From discussions with others it can often take a long time for gvhd symptoms to disappear. However we must keep fighting on. With gvhd we seem to be at risk of triggering flare ups to the disease by catching a cold from others or having any immune vaccines. However not all seem again to be affected but in early days of gvhd I guess we are more susceptible as our new immune systems are younger and still need time to build up thier effectiveness. So Audrey please ensure your daughter at the moment protects herself as much as possible with a mask as her immune system strengthens. I had a fairly quiet Christmas trying to keep risks at bay to concentrate my body energies on fighting the gvhd. I continued to have Ecp over the Christmas holidays and I believe Helen is undergoing her Ecp today. However it zaps so much energy out of you that you are not up to communicating straight away.
With this new year here hopefully we will all progress to improve our health. We all know it is a long hard fight but eventually we will get there.
I wish everyone a healthier new year, and keep up the good fight.
Thankyou all for being there.
sorry to hear you are feeling very down , we had Christmas with our immediate family and our new year eves was a early night with a hot chocolate and my book , we don’t mix with people like we did before , we always wear a mask when we are out which isn’t often , it’s a new way of life ,I take each day at a time , take care , stay safe
now I know with this group , we never walk alone
much love michelleanne
Hello Audrey, Dave and Michelleanne,
Really sorry you've had such a bumpy ride recently Audrey. I'm so pleased your daughter has a medical team and facilities where she's in good hands and they can offer her what she needs. How far is the journey from home to the clinic? Must be hard for the children that she's back in.
Yes, unfortunately it really is par for the course. Hard to believe, so horrible. They are doing lots of research apparently so maybe we'll witness some innovation sometime.
I've had a little gvhd flare up myself, but not half as acute as your daughter. I feel like I'm under water sometimes, balance poor, walking hard, turning difficult, ankle and feet painful. Stairs are very painful and toilet too. It's the skin gvhd. The team are going to discuss my case and brainstorm apparently. But maybe it's just cos I had covid and couldn't have my ecp for 4 weeks. Definitely two or three steps back at the moment.
Thank you for sharing with us Audrey, I'm sending you heartfelt calm and peace. So hard for you all.
Is she stable?
Hi , helen
i feel the same as you , one step forward to two back , I’m waiting to go and give blood because my iron is dangerously high , but my blood count isn’t high enough yet , also my thyroid count is high and I have high cholesterol so I have more medication to take , never had any bother with either before , so I’m feeling a bit sorry for myself .
how is you’re daughter audrey hope she is more stable and will be home very soon
it is so hard for all of us ,
stay safe much love
Sorry to hear that about your blood values.
I had a sticky patch with iron. I was prescribed it and it interacted badly with something else I was taking. It made me extremely depressed for a day or two so I stopped taking it (without Dr's consent) and things were instantly better. The docs agreed for me to stay off it without any discussion. Sorry, I can't remember what it interacted with.
I have hashimoto too so take Thyroxin as well.
I hope you get this sorted out quickly, it's unsettling.
About the same time I also had a false (very high) haemoglobin reading which was only spotted by my own GP (she's great). My GP sent me to get it checked it out and the outcome was "it's a false value", invalid.
Do you have a copy of your own blood values along with a list of the norm values for comparison? I've only compared values once, but it's good to know I have it.
I'd be interested to hear what's up. I'm sending you inner calm Michelleanne, to ride the waves.
I hope it's ok for you if I share this info. Please let me know if it's 'too much' , i can understand.
I have my recent numbers , my consultant has sent me them , my GP has said it has gone up a lot since having my transplant , have to increase my thyroxin as of today and a blood test in 4 weeks , my iron level is very high 2,000 and something it should be 500 , but my blood count isn’t high enough , so have to wait until it goes up a bit
I don’t mind sharing info , I worry if there is something wrong , but I know there isn’t
how’s things with you
Thanks for asking, not so well. Feel like im underwater and very painful ankles sclerosis and skin gvhd. Suffering a bit. A week today ecp again. Nice to have a week without it.
My appetite seems to be picking up, I'm forcing myself to eat more. I can't really call it appetite but something tells me to eat.
Take care, I agree with you, your blood values will get sorted. Good they are on to it.
so sorry you are feeling so unwell , I have painful joints and skin gvhd , another thing to add to the long list , I thought at the beginning of all this , that my bone marrow donor would put things right ( how silly am I ) I can cope with all this I suppose at least I’m still here
i totally agree if I lived on my own I don’t think I would eat , my husband keeps me going with that
I hope you feel brighter soon take care
It's nice to feel understood.
It is helen , lovely to have people who understand
Hi Michelleann, just to let you are not alone with your appetite. I am the same since my stem cell transplant I have no appetite. I eat because I have to live. I started with this immediately after the mucousitus and first had nausea I was then fed with feeding tube which kept moving in my throat which made me sick. I went home losing weight and really only put it on due to steroid effect. I had issues with my gall bladder and had laparoscopy to open duct and release gall stones. Got uncomfortable feeling every time I ate. I used to love food now that seems to have also gone. Now about 20 months after sct I am still the same hoping one day my love for food and appetite return. So now I eat because I have to.
mare you having Ecp for your skin conditions as Ecp is particularly known for its skin healing properties. Not that it works for everyone and can also take a time to work.
I had a feeding tube , which affected my throat and made me sick , 27 months post bmt, still struggle with food , my throat still gets so sore , don’t have good taste buds .
I hope my love of food comes back , I would be a cheap date if we went out , as I can’t drink alcohol anymore as that makes me sick
I joke that my donor is a tea total , vegetarian as my eating habits have changed so much I only eat because I have to
i was fed intravenously but thankfully no tube. We really do suffer ... it's going on so long, and I'm only 1 and a half years post sct. I'm finding eating very stressful, exhausting in fact. Maybe it takes a lot of energy but I feel like I've finished a marathon afterwards. I'm hoping if I eat more , I can turn my gvhd around. Just an irrational plan, but why not. I'd love to put weight on.
Anyway, night night you lot. Thank you so much for making me feel I'm not an alien.
Love to all,
sounds like we are all going through things at different stages , I’ve put most of my weight on , but I think it’s more my thyroid , than what I eat
I feel everything thing is a marathon at the minute , I hope your plan works it’s worth a try
we’ll get through this together
lots of love
Hello Michelle, Helen and Dave
i am so sorry that you are all having such a rough, challenging time. My heart really goes out to you all as I can see first hand what my daughter has to go through on a daily basis . I don’t think anyone who is not either fighting this wretched illness or caring for someone going through it can possibly understand the challenges that it presents.
I am so sorry that you are all having problems with eating and your weight. My daughter is the same. She is under 7 stone and trying hard to eat despite having no appetite. Her team are keeping an eye in it but she had never been able to drink milk or take milk puddings etc which they have suggested .
My daughter got home from hospital last week. They pumped her full of antibiotics, bloods and platelets. She had to have her second 100 day post transplant biopsy yesterday as the results if the first one went missing! She says that each biopsy seems to be getting more painful. Did any if you feel this way? She also had to have another chest ct scan as she had such bad pneumonia in hospital which damaged her lungs so they are keeping an eye on that.
im just wondering if you are all still having regular appointments at your hospital?
Mara is going twice a week to get her bloods checked and having a zoom call weekly with the hospital where the transplant was carried out.
like yourselves, the gvhd is very bothersome. It’s in her bowel so no wonder that she isn’t putting on any weight.
I just want you all to know that I think about you a lot and hope that the roller coaster goes upwards for you all soon. You are all so brave and positive and it’s so wonderful that we can all support each other. I know that I don’t have this illness, but talking with you really helps my worry and anxiety.
Sending hugs and loads of positive wishes.
I too felt the biopsy’s painful and seemed to become more painful but I also guess this was because I was so bruised from previous ones. Even without this it is a painful experience and you get very apprehensive / anxious before the event. Hopefully your daughter will get 100% donor from her results and will for next 3 results which is the best she can get and hopefully after the next 3 her consultant may say they can go on bloods alone so let’s hope she is 100%.
with regard to appetite I had to tell myself if I want to get better and want to live I have to eat, and unfortunately it is still like thi for me to this day. My appetite is still not back and I don’t seem hungry and that is roughly 18 months after sct. I believe some of this issue may still be related to gvhd and eventually it will disappear. If she is also taking prendisolone she will start to eat more and probably put more weight on especially if she is fairly sedentary like I am.
The more the blood results stabilise and also the gvhd the regular appointments should become less, starting usually at twice weekly, then weekly, then fortnightly, then monthly. Until she stabilises they need to keep a more regular eye on her and it is for her own health and to keep on top of any existing or new issues.
For a long time I had very uncomfortable stomach issues where I was never sure whether the sensations I had of uncomfortableness were fro being to full even though I didn’t really eat anything or hunger, but if I ate this feeling never really went away. Luckily over time this feeling went away, I just think it is time for these things to recover and you need to be careful in between not to catch any cold if you can to prevent flare ups. Luckily I never really had diahorrea as part of gvhd but I have read about lots of people having it and using medicines to block themselves. I had other GI issues such inability to make saliva properly so my mouth ended being continually dry and I started to get ulcers. I then took a steroid mouthwash 4 times a day and a normal mouthwash 3 times a day and in time after a few months my saliva making ability came back and I was able to stop the mouthwashes for this. I also had an inability to swallow even pills and the steroid tablets in time reduced the restriction in my throat. Our bodies are the best repair tool of all and it seems from everyone’s recovery process it is mainly time and patience as the body gets used to its new immune system and keeping the gvhd stable and dealing with any new issues and stabilising any over activity in the immune system as soon as it arrises.
I hope she gets everything stabilised as soon as possible as this is the best road to recovery even though the road still may be slow. Good luck.
audrey I really hope all goes well with your daughter , I was exactly the same , the wait makes you feel very anxious , I was pumped up with different antibiotics and had my lungs cleaned out
it’s a very rough time , but I turned that corner and so will your daughter
it’s a up hill struggle and we have struggles everyday , at least we have our loved ones to keep us going
I still have trouble with my swallow and my mouth gets very dry it’s something I live with .
now I have thyroid and cholesterol issues and waiting to give blood to reduce my iron
I started 3 times a week then weekly , monthly now 12 weeks but they are there if needed , I’m now setting stages of recovery and the future
sending lots of love and big hugs to you all
Thanks for sharing Audrey, it's lovely to feel a sense of value in all this, to be of some help.
I had lung issues and they syringed over a litre from one lung. The lung gvhd got better over time.
The gut gvhd 4th grade. was the worst. Loss of dignity, no chance to go far from a toilet. Very limiting. And yes, kept losing lots of weight and liquid, also no appetite.
The mouth gvhd, I chew sugar free gum, mouth wash gargles (aldiamed) and have antifungal drops. Flouride once a week, gel on gums at night. I'm always picking with tooth picks too. Oral hygiene procedure: is 1. Floss, 2. Brush with manual brush, 3. Interdental brush, 4. Electric toothbrush 5. Mouthwash, gel, anti fungal.
If she's got oral gvhd she might also have eye and genital. For the eyes I have gel for night and drops.. corneregel fluid. And for down under I use Bepanthen , a very sticky, fatty cream that doesn't spread well but makes peeing bearable.
Sorry you're in such a hard place. Her team are trying to get her stable, thats the main thing. The docs want to feel there's a degree of control on the gvhd. They can't remedy it but they can control it.
Sending you a big hug
Hello everyone. Thank you so much for all your detailed replies. They are really helpful and reassuring.
ill keep you updated on my daughter’s progress and hope to hear that you all have some better days soon.
You are all such a support to myself and each other. Thank you.
please keep going with the update , it helps me also , knowing what I’ve gone through , and what’s happening and my feelings are ok
I just noticed another parent coping, trying to cope , with transplant, aml in their daughter. It's in the list of topics.
You might find some relief there sharing parallels.
I hope you and your daughter are doing ok, maybe she's out of hospital, whatever. I'm thinking of you and sending compassion.
I’m sorry that I have been slow to text over the last week or two. I haven’t been very well myself - just a rumbling chronic condition which has flared up a bit.
Anyway, firstly , I hope that you are all keeping as well as possible and that the gvhd that Dave and Helen have been suffering with has eased off a little .
Also, thank you, Helen, for thinking about me and suggesting the new thread which I will go into.
A short update on my daughter. She got out of hospital after a short stay and has been doing as well as can be expected at this stage. Her consultant is pleased that she is stable at the moment. She is coping at home though does tire very easily. I expect that this is normal at this stage of her recovery? We had some good news - her latest biopsy came back negative. We probably should be a bit more excited than we are. I think it’s because we have been here before - after her first transplant so don’t want to get ahead of ourselves . However, I’m sure that you’ll all agree that we have to hang in to all the positives .
i think about you all and really hope that through this roller coaster journey that you are all on, that everyday will get you closer to good health.
Sending best wishes to Michelle, Helen and Dave.
so sorry you are feeling unwell hope you feel better soon,
that’s fantastic news about you’re daughter , I’ll raise my cuppa to her , hope this is start of better things to come ,
i think about you all everyday , but I don’t want to pester ,
hope helen & Dave are doing ok
much love & best wishes
Hi Audrey, above is a link to a facebook group on fatigue, the related group and App is called 'untire' and based on recent research from Holland. I'm sending it because I can't find a link to the untire app which I found really useful when I was struggling with cancer related fatigue. Maybe you can find it in the google play store. My fatigue is still there but much better.
I'm sp pleased her biopsy was negative, that's really the best news.
Best wishes to you, Michelle and Dave too and all of you who may be able to benefit from fatigue crf, management.
Thanks so much for sending this link, Helen. I’ll have a look and also forward to my daughter. It’s good to hear that your fatigue has improved . How has your gvhd been over the past week or two. I do hope that there’s an improvement.
Michelle, you never pester. You are such a great support and friend to us all and if we can be if any help to you, then please know that we are here.
Although I’m not going through this difficult illness myself, I can see from being very close to my daughter just how challenging the recovery is and I think that you are all strong, brave and most of all so kind and compassionate to others.
Thank you all for your endless support.
thankyou for that , you are all a big help to me
ill have a look at that site myself for fatigue
Hello Audrey, hdllo Michelleanne.
To answer your question, the fatigue is much better but the sclerosis on the ankles make me very limited to what I can do, that's why I got painkillers, also gvhd of the eyes, they burn and get very dry so I'm not allowed to drive. (Up to then I was able to drive 5-10minute trips) . I also wasn't sleeping and stairs terribly painful.
But not having fatigue makes me much better able to cope with the gvhd. I'm feeling less like a Zombie, less like an alien is in my body.
I even went to my choir last night. First time in two years. It's very close, in my village. I was invited to request a song to sing together. I chose "good news", it's a gospel song, very celebratory. Moving. I didn't know I'd get through this. In fact, the doctors weren't sure either.
I hope it gives you all hope. My friends say my voice has more energy too.
love to you all,