Hi Dave, …Michelleanne, Audrey,
Thanks so much for your update Dave.
Just to clarify where I stand with jakavi… I’m in Germany where jakavi is prescribed by the state health system. I have fortnightly ECP and (immunosuppressive) jakavi 20mg/day. Unfortunately, since my other immunosuppressive medication (myfortic) was abruptly stopped “because I was doing so well”, I’ve had a considerable gvhd flare up. That means I’m on two different immunosuppressive medications (jakavi and myfortic) and they are telling me I need to be patient about my skin recovering after the phase without the myfortic. Dave, the immobility from the skin gvhd is awful. I have a super physio who says the gvhd skin is like burnt skin and the only way to get elasticity back in it, is to move it. It’s very very painful but needs to be moved, stretched through movement.
Sorry… I haven’t done a very good job to explain things. Dave, I’m thinking of you and sending you compassion and kindness. I hope , even without jakavi, things get better.
Love to you all,
Helen
Hi everyone
Thanks so much for all telling about your “ food” journey. It is reassuring to know that the problems with eating and food seems to be part of the recovery journey. Michelle my daughter is similar to you in that she seems to be craving sweet things and she didn’t have a sweet tooth before the second transplant!
Im always thinking about everyone here. It’s a very slow journey that you are all on with many ups and downs on the way. I’ve said this before but I will say it again - I think you are all so strong, brave and resilient and I really hope that you all have a better week ahead . Take care and be kind to yourselves . Xx
Hi all
you are really going through bad times with you’re gvhd , I have it in with my skin but no where near as bad as you , I really hope you can get it sorted soon , I would say my eating is worse than my skin , sore throat and no taste buds
together we will get through this
take care and much love
michelleanne
Hi Michelleanne,
Lots of mushy things. Finely chopped green leaves with lots of nice dressing, scrambled egg with a dash of cream over it, astronaut drink… but so expensive, bananas, weetabix warmed with milk and mashed up, ice cream. Finely chopped anything with dressing/sauce. I now like banana fritters with honey. Any cereal left to get soggy in milk.
Best of luck
Helen
Hi everyone . I have been thinking about you all and hope that the gvhd has improved a bit, Helen and Dave . I also hope that Michelle , you have been keeping as well as possible
my daughter is back in hospital again. Fourth time since she was discharged in December . Her lungs are still causing problems so a bronchoscopy booked for Tuesday.
They started her in immunoglobulin yesterday and she will get this as an outpatient every month to try and boost her immune system. You are all on you such a long hard journey but you will get there.
Best Wishes
Audrey
Hi audrey
sorry to hear you’re daughter is back in hospital hope she feels better soon
im not too bad at the moment apart from aches and pains , enjoying time with grandchildren outside now the weather is a bit better .
how are you ?
best Michelleanne
Hi Michelle
Glad to hear that you are enjoying time with the grandkids. They really are a lovely distraction and hopefully the weather is moving in the right direction now for us to be all outside.
I’m going to be kept busy with the wee ones during the holidays. Helps me to focus on things other than worry and grief.
Audrey xx
Hello Audrey,
Oh no… back in again:(
Give her our love and best wishes.
Unfortunately my gvhd is chronic and so its ‘take every day as it comes’. I’m a bit concerned for Dave, he’s struggling.
I have a cold, cough, headach and the clinic are going to tell me what to do… they just called back, I need to take a covid test and drink lots, inhale etc.. the usual.
Most days I feel like a Zombie, groggy, and for about an hour or two late in the day, I get a little time when I can do stuff like empty the dish washer… very slowly. Skin is still bad, eyes are not good but I got permission to drive again ( yipee!)
My eating, can’t call it appetite, is still good, bowels working well… I just want to be normal and get back to life.
Thanks for keeping us posted about your daughter. I hope it’s a short visit in the clinic, good to know she’s in good hands and they can take her in when she needs it. Horrible for you and the kids though. Thinking of you,
Much love to you all,
Helen
Morning all
i do get concerned about Dave and your daughter audrey , I also hope you are getting stronger helen
im like a zombie and weiry first thing in the morning and early evening sometimes all day , so I try and do things when I can
I was told normal is a cycle on the washing machine , as we are all different
I think we all have to learn not to be so hard on ourselves I agree just take each day as it comes
love and best wishes
michelleanne
Thank you very much Michelleanne. The washing machine ‘normal’ I’ve heard already, but you made me smile.
Unfortunately Dave can’t get the meds he desperately needs in his UK health service. This is soo debilitating at the best of times, it must be awful. I have no ideas what he can do.
I hope this “frequent hospital stay” is a phase Audrey.. im praying your daughter will become stable, even if just for a while. You all need a rest from the roller coaster.
Love to all,
Helen
Hi helen
i wonder how Dave is , hopefully they’ll be able to help , we all do need to rest , even you audrey and look after ourselves
much love
michelleanne
Hi All,
Thank you all for your conversation and thoughts. I do find all fairly difficult especially not being mobile. My life has always been outdoors, walking, gardening, diy, driving, cooking etc. never been a reader or inside type of person and with this skin scleroderma gvhd my skin is pulled so tight I can hardly walk and not stable so I spend about 26 hours in bed and 8 fixed in armchair in front of telly waiting for something to happen even if I got a bit of flexibility back. I am currently tapering off the prendisolone as they are not doing anything and I am not sure that being on a low dose is giving me mood swings and lots of fatigue as it is quite common with low dose steroids. My gvhd symptoms have remained stable now for about 9 months with legs being main issue. I am currently on 2.5mg prendisolone per day and I guess my consultants are trying to get me off it as not doing anything for me. They also stopped my cellcept immunosuppressant I was on for a couple of months as that does not do anything for me either as it does not target skin fibrosis as in cgvhd sclerosis. The only two really designed for the hard fibrotic skin are Jakavi and rezurock which as you know are not currently available in uk so unfortunately that also gets me down. I know everyone has thier own issues and is now easy for any of you. I am sorry your daughter has gone back into hospital, I am sure as her body picks up strength the visits will become fewer and hopefully she will soon not need to return as an in patient.
Hopefully you are all enjoying the sunny weather. I had my Ecp on Monday and Tuesday this week sessions 41 and 42 so not aloud in sun for a few days due to the uv effect. Tha nurses are gradually finding it easier to locate veins in my arms for Ecp and also it is getting slightly less painful inserting the needles. Maybe my skin is very slowly recovering and just need to give it time. Good luck everyone. Onwards and upwards.
Hi Dave, I think the ecp improves the quality of the veins. They find it easier with me too.
I sing (almost a hum) when they inject a needle. Amazing grace. They really like it, doctors too.. it calms them too. I prepare them and tell them I need to do it so they don’t think I’m bonkers. I do it very quietly. The other song I do is my bonnie lies over the ocean.
Your description of the immobility gives me a sort of reprieve… I’m very similar. The prednisolon really depressed me big time on top of the immobility. It’s famous for it.
I was in pyjamas till lunchtime today, slight temperature and cough, headache, but not covid.
Dave, you are with us, we all get a lot from the group and we all know if we don’t hear from someone, they’re meeting their needs in other ways, and that’s good.
It’s just awful, awful, awful, take every day as it comes on this roller coaster.
Love to all,
Helen
PS. Check out the link I put in the jakavi thread.
Hi all, was in the clinic this morning. I knew I wasn’t balmy when they put me in a wheelchair. It was such a relief.
Doctor said my flare up was due to recent infection and they can’t do anything. Paracetamol.
Happy Easter to you all you wonderful bunch, thank you for being there.
Helen
Hi all
I had a chest infection at Christmas 2 lots of steroids & antibiotics still have it but they say it’s viral , I was told when needed to use my wheelchair but I feel such a fraud ,
hope everything else was aswell as it can be
happy Easter to you amazing people wish I could give you all a hug , I’ll send one virtual
take care much love
michelleanne
Hi Everyone
You are all having so much to contend with and I think it’s amazing how despite what tug are going through individually, you all take the time and compassion to think about others. I can imagine how frustrating it is for you all to have to go at a much slower pace and not be able to do the things that you did before this horrible illness struck. You all sound as if you do as much as possible and I si wish that you will all take a step forward.
Michelle, I hope that your chest infection clears up soon and Helen and Dave, I really hope that you get some relief from the gvhd.
my daughter got out of hospital on Tuesday after having another bone marrow biopsy. The deep biopsy had come back positive. This result is like a sledge hammer. They are going to do another one next week but we’re all so worried .
anyway, I hope that you all have the best Easter possible .
love and best wishes
Audrey
Hi audrey
im so sad to hear about you’re daughters bone marrow tests , I hope you get better news next week , you will all me in my thoughts and prayers , keep strong
always here for you
take care much love
michelleanne
Hi Audrey,
I too am sorry to hear about your daughters bone marrow biopsy, let us hope the next one is more positive. Like Michelleanne I am praying for you and your daughter.
dave
Hello Audrey,
I got gooseflesh as I read that awful news about your daughter’s biopsy. I’m really sorry for you all.
A friend of mine had to have a second stem cell transplant for it to work. He’s now doing really well 3 years later, much better than me. I’m praying, wishing…
A big virtual hug to you,
Helen
Hello Everyone and thank you for all your kind wishes for my daughter.
She has already had a second SCT . I am so hoping that next week’s biopsy comes back negative . She has gone through so much and needs a break. The initial biopsy was alright but it’s the deep one that has shown something up.
we had my sons internment of ashes today. We do need my daughter to get well. Xx