GVHD The Gift That Keeps On Giving !!

GVHD The Gift That Keeps On Giving !!

Good Morning folks, thanks for your concern. . It's fair to say I've been under the cosh again recently. . I won't dwell on it all because I'm going forward now not back. So I will tell what going forward means in real terms.

I'm seeing an eye specialist who specialises in Graft Versus Host Disease GVHD. She is one of the best so I'm lucky there. Likely due have tear ducts cauterised as tiny silicone grommets keep coming out. Just got immuno-suppressant drops on 3 month trial which so far ive tolerated. 'See' how they go.

I'mve been accepted for Electric Corporeal Treatment ECP for another 3 months which I'm very pleased about. This is where they take sufficient blood spin off my white cells and expose to UV Light before pumping them all back in me again. Hard to measure results.

I'm taking just over 700 tablets a month which I'm not pleased about but my Steroid is now very low dose so hoping side effects will diminish as a result.

Still shooting 69 units insulin daily but managing sugars to allow a few treats.

My back is still damaged with compression fractures on several vertebrae , , steroid related. The local Hospice pain management nurse has been and I have a 7 day low dose slow release morphine patch which I think is helping. But I've shed many tears with the pain which is indescribable and wears one down 24/7 so hats off to the Hospice.. I'm hoping to back walking again in next few days as pain has eased considerably.

I bought a new to me rise recliner electric chair and dropped lucky as like new at fraction of cost.

I have a electrical hospital type bed in living room which I'm going to try sleep in soon now back pain eased.

And finally I built a new Light Sabre as my old one lost its glow and I need a bright energy to take me forward.

My ever caring hard pressed wife conines to be my rock and truly is an Angel.

As the late great Dave Allen used to say "May your God go with you"

Sorry any typos my eyes poor. Chris xx

42 Replies

oldestnewest
  • Good to hear from you. It certainly sounds challenging.

    Sounds like you have a great bunch of people looking after you.

    All the best to you and your family.

    Paul

  • Gosh! Wish you well with all you have been having to cope with and it must be such a relief to have the pain reduced and you still have a smile on your face . Let's hope the energy takes you forward to a much brighter place in the future for you and your wife to enjoy together , you so very much deserve it . Best wishes . Jk

  • And here is me moaning an MPN voice about my miner problems compared to you.

    We have never met Chris, but I believe you are the strongest ( not in like Mr universe or anything lol. ) person I know. . Stay strong No being shaken too much or you will rattle.

    Trying to be lighthearted but deep down I sincerely wish you well and I can only virtually send you a big hug.

    Anne X

  • Anne, dont ever feel bad about moaning about your problems. They certainly arent minor at all.

    We shouldnt judge ourselves based on what others are suffering, Chris certainly has it rough right now, tougher than most, but we all have our daily challenges and they shouldnt be understated.

    Hope you are feeling better after your problems.

    Paul

  • Aye here here Paul , , well said my friend. . 🙌

  • What a difficult rocky road you have travelled. Wishing you both all the very best for the future, you more than deserve it. We once met in the lift at the MRI, me visiting my husband in there.

  • I recall our brief meeting well . . Hope you're both doing well. It can certainly be challenging at times LOL Cheers

  • You make me feel very small Chris,how you keep so cheerful is incredible considering everything you have going on. I am also struggling to see ,have a dressing on face covering left eye rest of left cheek ,ear,etc,a carcinoma under left eye ,I was feeling very sorry for myself ,then saw your pic and mail,Good on yer !!!!!Keep that sabre alight.Very ,very best of best to you and family,and yes ,may your God go with you....Sally xxx

  • hi there Chris. So very good to hear from you . It must be a year ? Since you had BMT and you haven't had it easy..... Like many others are saying it puts our bits into perspective! I sincerely wish you and all your family the best. They must be so very strong - as are you - and it does sound as though you have a fantastic team and I really believe that is so important. You and your family are always in my thoughts and prayers. God bless. Janice

  • Soooo good to hear from you Chris, you have had so much to put up with over the last twelve months but you still sound churper. Love the pic and the light sabre is looking good. I can't imagine taking that many pills, I realised yesterday that I haven't taken my calcium/vit d for 3 weeks, whoops! I hope you have been able to spend some time with your grandchildren. My number 7 grandchild is cooking and due next May.

    I used to love watching Dave Allen - may your God go with you and your wonderful wife.

    Take care and know there are lots of us always thinking of you.

    Judy xx

  • I can think of better gifts to have !

    Always storming the Heavens for you .

    Xx💖Xx

    Oh and 🐘😂 x

  • Oh my, you haven't been dealt the best hand. I admire your positive attitude.

    May the force be with you!

    Moina

  • Hello Chris As always love to you and your wife. take care, Bye Gill

  • Hiya Chris, you are such an inspiration for us all - you cope with all that is thrown at you and obviously your wonderful wife does too! I send you loads of E Hugs and wishes which cannot really be described by words. Thinking of you and your family. Aime xxxx😺😺😻

  • Hello Chris it's nice to hear from you i wish you well and it sounds like you have a good team around you I always think now it gets dark early it's nice to close the curtains and watch a nice film or listen to some nice music you sure do sent out good light to us all keep strong best wishes poppy

  • Oh my gosh Chris just don't know what to say you have so been through the mill. I'm sure your positive personality has helped you. So hard for your wife to see you suffer so much and for you to go through these challenges I genuinely don't know how you cope with them all. Fingers crossed everything will improve and you get home asap. Thanks for letting us know how you are I wish you all the very very best.

    Pat

  • I'm at home ta so ok !!

  • Once again Thanks for all your responses folks. . Don't forget to put things in perspective and as Paul rightly points up you can't compare my situation with your own as I have stage 4 of 4 stages of GVHD, which is grossly unlucky. . Some transplantees have mild modest GVHD, a few like me are hit hard by it and some like in every battle or war are fallen.

    A young lass who has the blood transplant afore me has also stage 4 GVHD and boy do I feel for her as she has in her lungs so currently on an oxygen concentrator. But we manage a laugh together and her positivity rubs off on me. So there is always someone worse position than oneself.

    Cheers Ladies and Gents , , Chris xx

  • Hi Chris. Is the young lass called Charlotte. I got chatting to her in clinic a few times and I wondered where she was, I asked but I get the impression they don't like it, patient confidentiality etc. Best wishes. Lynn

  • Hi Chris. Sorry to hear you are still going through such a rough time. I was hoping you were through the other side by now. Do they know why you have suffered so much, as based on reading what you have gone through, I don't think any of us would opt for this treatment!

    Take care and I really hope things improve for you, and you get to enjoy life without the suffering x

  • Just bad luck I'm afraid or maybe good luck as I needed a very strong graft to see off the Myelofibrosis which is hard to eradicate. There are no guarantees with any medical procedures or ops. But it has brought my wife and I closer together so not all doom and gloom.

    I wouldn't like to think anyone would be deterred from undergoing BMT based on my experience because there are a handful of us with stage 4 GVHD out of many at clinic who are successfully treated and gain a new life. It is a miracle of modern science and improving based on people like me and others who have different experiences. The learning never stops.

    Chris

  • Wow!. You're certainly going through it Chris. I moan about my condition but as they say there is always someone worse off than you and this certainly puts my problem in perspective.

    Hope you are moving forward and all our energies are with you.

  • You are a walking miracle and never far from any of our thoughts (or prayers) dear Chris...your wife is also a walking miracle! Pain like you have suffered is just beyond all words and again we on the sideline just are astonished and moved and inspired by how you have coped...and are coping. A very special day when there is one from you and know you gladden hundreds of hearts. May you go from strength to strength, even though realise, many hurdles to face, but know you are surrounded by vast numbers of caring ones who are sending their love and lifting you up and your wife and family too, in our prayers. Tinkerbell13

  • Chris, I just hope a brighter chapter is about to begin in your life soon.

    Mary x

  • Hello Chris, how lovely to get news of you but sorry the road continues to be uphill. I think of you quite a lot (I have MF too) and like so many others, wish you a peaceful future for both you and your wife. May I say though, your photograph is really uplifting - keep the sabre light burning!

    Linda

  • Its good to hear from you, although I am so very sorry Chris to hear that you have been battling so much agonising pain, and other health issues. I am glad that you are getting such good care, not the least of which from your wife. I don't like the sound of the 700 pills. I like the tiny photo of you and your grandson, I hope he's thriving. I have been wondering how you were doing, so I was very pleased you'd posted, although my heart totally goes out to you. Re the pain and the morphine patch that really resonated. Does the UK support medical marijuana and would that help? Canada is starting to go that route. I think you are always in everyones thoughts and wondering how you are. I'm sending all good wishes Chris, keep up the good fight, I'm glad you have such a wonderful wife. May the force be with you.

  • Good to hear from you Chris, despite your sad circumstances which have just made me feel very tearful! I think the others have said it all but would just like to add my love and best wishes for an eventual full recovery. As you have said every cloud has a silver lining, and yours is certainly your wonderful wife. Love to you both, Karen xx

  • Thank You All. , not sure about the med weed or whatever form it comes in Jean but my stepson has offered it up to me. . LOL. He's a bit of a happy go lucky jack the lad with few responsibilities even though in his late 20s. . I won't smoke it though. But might take it in another form if when available. .

    My Grandchildren are coming along great and are 2 and half and 6 mths. Hoping to see them in next week or so. My Grand-daughter on my wife's side is 8 going on 18, she told my wife yesterday that even when Grandad is in the wrong , , he's right !!! Brill. . LOL

    Cheers Chris xx

  • Hello Chris you certainly have a lot of pals here eh so many replies I don't think there are any of us who don't think of you and like to get your posts. But I can see from all you say in this post how things are for you, not so easy eh kid and you are as always showing courage and selflessness - many thoughts are with you and your wife and know much warmth and care comes out to you. Jill

  • Sorry to hear that the treatment is still a hefty challenge - when I read 700 pills/month I thought 'thats alot', but in fact for the moment that's pretty par for the course for myself at the moment (32/day).

    Interesting to see that your corticoids have been reduced, have they replaced it with something else?

    As you so rightly say, we're all different and our bodies react differently. A SCT was presented to me as potentially being the key to opening the gate to a new pathway in life - along the way there may be obstacles.

    Hoping that soon enough the way ahead will be a little less thorny.

    Take care Crapaud

  • Yes the tablet count sounds scary when you multiply the days intake out. . I'm struggling a tad with them , , just fed up with them after all this time. My steroid is reduced to help minimise side effects, not been replaced by another yet.

    Gary we could both do with turning a corner to the promised land my friend. My best wishes to you and hope your ruxo is helping. . Cheers buddy

  • Hey Chris... :)

    And may the force be with you also...

    Loving your new light sabre. Very cool indeed...

    You are an incredible inspiration to us all Chris...

    Steve (Sydney)

  • Gosh you definately are a strong person. Good on you for giving a good fight. You truly are amazing. No more whinging and whining and feeling sorry for myself. Good on you mate

    Tracey from Australia

  • Thanks Tracey you make me blush. . I was in hospital back in March April and without being dramatic it was touch go whether I would pull through. . But I have an inspirational neighbour called Cath who was 90 yrs young recently. She lives alone and is very independent. In her early 80s she suffered a major stroke and it took her half an hour to crawl to the phone and ring the emergency service. She made a full recovery. More recently she had a prolapse and spent time in hospital needing a repair op.

    When I was at my lowest I asked myself "what would Cath do?" And I still do. The answer is she would say "c'mon lass get a grip on yourself" or "dust thisen off and get on wi' it" . . She is a real trooper who worked in a munition factory during WW2 and flew gliders in the 60s / 70s . .

    Cheers Chris x

  • Good to hear from you Chris, albeit the wrong reasons! I'm sure being positive is helping you. I too have a 90+ years young friend who puts us all to shame with her energy and speed of recovery from various complaints/accidents. I often complain about the pain in my knees but know others like yourself are suffering so much more. We should all count our blessings (and then have a quiet little moan)

    If good wishes help then you will soon be feeling better with all love coming your way from this site!!

    Best wishes

    Lizzie

  • Hi Chris, I`m just coming back to the forum after a few months lay off and after deleting many emails it left me wondering how you are doing. Well what a trouper, hope things are gradually getting better for you. Your photo is a vast improvement on the last one I remember seeing. Good Luck - Sue.

  • Hi Chris,

    Good to hear from you, wish it was better news, but the force is strong with you it is!

    You have been an inspiration to me putting a lot of things into perspective, I have come through my own little meltdown, am off the interferon although it was controlling my blood, I lost my marbles and tollerance, now back on HU got my marbles back as well as a host of other side affects! And am too thankful of a very supportive wife.

    Good luck and have as much fun as possible.

    Ourlife

  • I haven't been on this site long but you are definitely an inspiration! I'm hoping you have a turn of luck very soon! May the force be with you 👍

  • Gosh Chris, been wondering how you were getting on. you certantly have been through so much this past year or so , and i truly admire your strength. So stay strong young jedi and keep going forward all the best for the future Best wishes Holly xx

  • Glad to see you back chatting sounds like you got a great bunch of people round you through your many challenges you take care and keep on posting Michelle

  • How's things going xx

  • Not great but at home at least. . just need turn corner and regain appetite . . virus sooo hard to shift Thanks for thinking of me Shelly x

You may also like...