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Hi all, I'm deeply moved by what I just wrote, hubby too. Thank you so much for being there, you've strengthened me on my continuing journey.
im just checking in to hear how you are all doing. I really hope that things are going a bit better for you.
my daughter is managing to stay “ stable” at the moment. She’s still very thin but making a good attempt at eating. It’s lovely to see her with her family although I know that she is very fatigued and the little boys have so much energy!
she was at the hospital today and still doesn’t need any bloods or platelets .
she was so ill for so long that I can hardly believe that she’s at home and functioning. I know that she still has a long way to go but I hope this will help others who are starting off in their journey or who are struggling at the moment.
Thanks for updating us Audrey, it feels supportive to think that she's able to be with her boys. It's good news and so lets just enjoy it!
I had some good moments over the weekend. Thanks for your post Audrey, it has just reminded me.
PS. Oh yes, before I go... A new dish I discovered today, a little pack of instant noodles including flavouring and oil in tiny sachets. Make the instant noodles according to instructions (3 mins covered in boiling water). When they're ready add them to a little pan of stir fried thinly sliced baby spinach, thinly sliced carrot, thinly sliced onion, mushroom... whatever you fancy, thinly sliced.
It's super wet, soft and mushy and tastes of something bearable.
Hi Helen. Thank you for your reply and the recipe. It sounds super quick, easy and tasty!
I’m so pleased to hear that you had some good spells over the weekend. Hang o to all the good moments and they will het more as time goes on.
audrey it’s so good to hear you’re daughter is improving slowly , and you also helen , I like super noodles , I eat a lot of fish very little meat as a I can’t swallow it ,
it takes so much out of you , I find everyday is a different battle we get through it as long as we are all at home and enjoy everyday and every little thing
keep up the good fight
love & best wishes
That's it, thank you Michelleanne, they're called super noodles.
Yes, this site, ie, you lot:) are helping me stay positive and count every tiny blessing.
I'm in the clinic tomorrow for my sclerosis. I'll keep you posted.
please do I’ve been to see my gp today for steroid and more antibiotics , then bloods taken on Friday and chest X-ray next week , what a exciting life we lead , I hope all goes well for you
Just to follow up.... For the sclerosis I just have to keep moving my ankles and applying lots of moisturising cream every few hours.
For the eyes the doctors are not specialised enough and they suggested I go to the eye clinic outpatients in the next few days.
I didn't get my lab results as they were still working on them. Stupid cos I was ordered extra early to get the results back in time, but they didn't take blood until I'd been there for 2 hours. I think it's probably cos my German is good but maybe not good enough.
Anyway, I'll get off here. A bit typical really, localised symptom treatment as always. I wonder how bad it has to get before they back track on immunsuppressants. I'm on 20mg/day jakavi.
I hope your all having a peaceful evening.
Best of luck to you all,
I have to moistures not every day , only when it flairs up , hope you’re lab results are ok when they come back , I’m in the uk I don’t get my results on the same day
I’m still on all my meds I was on in the beginning my blood isn’t high enough to come off them
Hope you are peaceful good night god bless
When was your sct?
I'm on antibiotics at the moment, my bowels seem to be unsettled with them. I'm taking them prophylactic after a little biopsy. Looking forward to stopping them.
How are you doing? It's good your blood values are stable, but a shame they're not improving. I guess being in the now is all we can do anyway.
Thanks for sharing.
i had my bone marrow transplant 2 years ago I have a 23 year old German man bone marrow
im not too bad got a chest infection so I’m on a lot of meds ,
we take each day as it comes and enjoy
Thankyou for the support it means a lot
Hi Michelle and Helen
i am so sorry that you are both going through so much just now . Michelle, you sound quite similar to my daughter with the chest infection , x ray etc
You are both such warriors and it’s definitely one day at a time.
Unfortunately my daughter is back in hospital . She spiked a temperature having been fighting a cold for some time. They’ve found a bacteria in her blood so more antibiotics . I’m so disappointed for her as her partner and the boys were going to a lodge for a week and now it’s not going to happen. However, like you both, she’s strong and knows in this hard journey that there will be blips along the way. I feel that I’m always on red alert .
I really hope that you get your eyes sorted out, Helen. Probably the eye specialists are the best to help you.
Michelle, like Helen, you are definitely being challenged just now but the medics know what they are doing and will keep you on the tight track.
Sending love and positive thoughts .
sorry to hear you’re daughter is back in hospital , hopefully not for long I went through all of that , it worries me going where there is different people about and strange places , but I love been outside , it will give them something to look forward to later ,
we are all in good hands , we would have been in a sorry state without them
keep safe best wishes xx
Im just checking in and hope that you are feeling a bit better and that with spring round the corner that you will manage to get out and enjoy the fresh air.
my daughter is doing quite well at the moment. She is a bit frustrated at the limitations that goes with the illness and is quite fatigued. But she’s at home with her family and her appetite is improving slowly.
Im always thinking about you, Helen and Dave.
not doing too bad , went for my blood tests yesterday and a lung function test , so have to wait for the results , can’t wait for the warmer weather I love to see everything coming to life after the winter.
that’s wonderful news about you’re daughter take each day as it comes I still get very frustrated
everything seems to be going in the right way
always thinking of you all
best wishes& much love
Thanks for your reply.
I think everyone who has gone through a transplant is so brave and strong. The journey after the transplant is still such a roller coaster for many. I know this as my daughter had been back in hospital twice since Christmas. However, like everyone, she finds the strength to keep going. I tell her that I can see how far she has come, ever thought she gets frustrated with the slow rate of her progress.
im sure when the weather gets milder and you can get out in the fresh air, this will lift your spirits. You are all my heroes.
we are all on a roller coaster , I didn’t expect it to be as bad ,
im really looking forward to that enjoying spending time with family
how’s your daughter ?
Thinking of you and your daughter. I'm imagining you're quiet because you're enjoying a positive time together, a more stable time. I hope so.
Hi Michelleanne, I hope you're doing ok too. Riding the waves with trust and self compassion. We're doing really well under terrible conditions. We can be proud of ourselves.
I’m not too bad , enjoying time with the grandchildren , not enjoying the snow and the cold weather , we are doing well as we can be , be very proud and thankful for everyday day , even when it’s a bad day with raging hormones and everything else lol
hope you are doing ok
My goodness you are really going through it, I'm so very sorry about your son and what your dealing with is just too much, try and stay strong and don't forget to look after yourself too. The symptoms your daughter is experiencing are very similar to mine post transplant, the fluid retention was so bad I could barely walk, and oh my goodness the tiredness and lack of appetite was just awful, at times I thought "this is no way to live", but it does pass my freind I promise you. I'm now 8 months post transplant and doing well, I pray you'll say the same about your daughter soon..x
Hello Audrey, Michelleanne, Dave,
I'm in the clinic overnight for the ECP, you have to stay in here in Germany. It went well today. Tomorrow ecp and eye clinic. I can keep my eyes open again and I use artificial tears which are great, ciclosporin and steroid drops. Getting back on the immunosuppressive seems to be the secret, but unfortunately my sclerosis is getting worse. It's ankles and mostly lower legs but it's spreading. It's just skin gvhd... makes me immobile.
I'm feeling ok emotionally. Celebrated my 60th recently, recharged my social batteries. Very small gathering and a bit too much for me emotionally but glad I did it. Could count my blessings.
I read above that your daughter's eating a bit better Audrey. That's great news. It seemed to be a big step out of the fatigue for me when eating improved. Takes a while. I found it helpful to be told I could eat anything I want, just eat.
How are your eyes Dave? Can they increase your immunosuppressants for it?
How are your blood test results Michelleanne, how're you doing?
This little chat thread with you lot is very helpful. Thank you for being there. No-one else can understand. I'm blessed with a loving family but they can't get it.
I'm not sure about the new website design. I'll get used to it.
hope you are all ok , helen I hope all goes well in the clinic , my blood tests are ok I’m going to hospital every 5 weeks to give blood to get rid of the iron , I’m still on all my immunosuppressants my legs ache and swell up my gp says I’ve just got fatty legs they don’t understand , pleased you enjoyed you’re birthday , it’s my 60 th in June my family don’t get that I don’t want a big party I can’t cope with that , so we are going to the beach with the grandchildren and having fish n chips
I’m so happy we have these chats , because you all understand like no one else does
Glad you all seem to be coping ok. Unfortunately I find it all very difficult. I think it is because I am so immobile and spend most of my time sat in front of tv. Like you Helen I feel like the scleroderma gets worse and I still feel so fatigued all the time. I have always been such a fighter to make progress, but with gvhd there is nothing you can really do except wait and hope, as this takes a long time it unfortunately gets me more down. It helps me to hear you are all making progress however slow it may be.
sorry to hear you are finding things very difficult , I have some days when all I do is sit , and have very dark days , you are such a fighter and a very strong person , I find it easier to go one day at a time try not to be so hard on yourself , always here for a chat if that helps
keep strong take cre
Hi Dave, (hi Michelleanne and Audrey and Jan3)
I'm feeling relatively good cos I just got out of the ecp and it boosts me. The scleroderma is painful and limits my mobility too Dave. It's like having cheese cutting wire tight round my ankles. I've started taking paracetamol for it.
I'd like to thank you Dave for being so helpful when I was down. You really helped and made a difference. It's endless. It's ok to feel bad. I find it really hard to accept that, but easy to say.
I think I said i practice self compassion exercises. One thing that helped recently... "when I'm struggling, talk to myself like I'm my best friend ". I say it aloud, .. "dear Helen.... this is hard and you're doing really well"... etc..etc. praise and encouragement. Sounds banal and a bit weird, but it has helped. I forgot about it for ages but active practice helps. This chronic gvhd sucks and we can't change it.
I'd better get off to bed, physio in the morning, the skin's so broken he can hardly work on my ankles.
I'm with you all. Thanks for being there and sharing.
Hi Michelle, Helen, Dave and Jan3
im sorry that I haven’t been here for a while . You have all been and are going through so much but how I admire your resilience and strength to get up and function every day.
Dave, although you feel despondent that you are “ doing little”, believe me, you are doing amazingly well to get up in the morning and watch tv. You all are having such a long hard journey and yet you take the time to support each other ( and me ) . I have such admiration for you all!
I can understand the pain and fatigue as I suffer from quite severe fibromyalgia . Nothing else ! None of the horrible, challenging symptoms that you all have to deal with.
My daughter has been in and out of hospital. She’s picking up so many infections probably from her wee boys but she needs to be with them for her well-being. I’m trying to support her and her family as much as possible. I think and hope that she is doing as well as possible. The doctors have been talking about decreasing the immune suppressants but that could make the bowel gvhd worse and she’s so thin as it is that they want her to gain some weight.
Anyway, please be kind to yourselves . Although all your symptoms vary, I can see with being close to my daughter, just how difficult this illness is to cope with.
Hi Audrey, Helen, Michelle and Jan,
Audrey it is so good your daughter is doing so well. Look at where she was initially in hospital and now catching viruses and fighting them off. Such great progress and has come so far. We all have to come off the immunosuppressants to make progress and they are not really good for you in the long run. When I was on cyclosporine in the beginning and came off it did not seem to affect me except that my immune system got stronger as it would. Yesterday I came off cellcept as was not doing anything for me except giving me side effects.
Thankyou all for your support recently and being there. Sometimes I find it very difficult mainly as I suppose I don’t see any real progress in my scleroderma reducing which is my main issue I have taking away my independence. The medication that would probably help me Jakavi (Ruxolitnib} is not currently approved for use in uk but they are trying to get it approved for gvhd.
luckily my steroids have been reduced slightly to 5mg every other day ie prendisolone so hopefully this will move in the direction to reduce the fatigue and the Edema in my legs.
It is good to see Helen making progress with her diet which is also improving her fatigue, and that her vision is also improving.
hopefully we will all make some progress this year. As I have previously said in past we all have to be patient as it takes a long time to improve your body after a Bmt and normalise the new immune system.
Hello my dear support team :D
I was a little concerned to read they're thinking of getting your daughter off the immunosuppressive. They know what they're doing but the recent attempt to get me off one of my two immunosuppressive really backfired and I've since read in the Facebook gvhd group of someone who ended up one icu after they tried to get them off it.
A tip that I'm pleased with, also from the Facebook group is, ... don't start tapering off the immunosuppressive until hhe symptoms are gone, not nearly gone. I guess that means, Audrey, that if your daughter is symptom free then go ahead, but I'm not sure she's there yet.
I don't want to end up on opiates again with eye gvhd as a result of abruptly stopping the immunosuppressive meds. Thank goodness my Dr knows me and has a good overview.
Now I've been back on the meds for 3 or 4 weeks I'm starting to feel human again. I really appreciate it. ...
Dave, when we are in that hard place we can't look up, never known feel human and engage with others. You're a precious part of this group, whether unable to function, or having a positive moment. Talk to yourself quietly out loud as if you're your own best friend.
My building sites at the moment are skin below knee and eyes. Not very mobile. Don't get out to 'walk' at all.
Love to you all.
jan 3 you are doing great , I wish I was as far as you , I’m 2 years post bmt .
we all have good days and very bad ones , I find the hardest part not doing what I want when I want , the best part is having my husband with me all the time he’s my soul mate.
. I’m enjoying spending time with our grandchildren but they tire me out so much.
you are all doing amazing in different ways , and different times
think where we have been , we have a good team going here , the support I get from you all is what keeps me going
Love & best wishes Michelle Anne