Hi Folks, , Thought it was about time I 'signed in' as I know I've been a tad off radar of late. . Hey I'm doing ok got a few issues the gout in my foot being the most troublesome to me as I'm having to use crutches which isn't really a big deal in the grand scheme of things I spose. . .
Was at hosp on Monday and back tomorrow (on our wedding anniversary!!) , so update is that Doc gradually reducing my anti rejection drug based on a test that came back with a below average result meaning there's more of me left than they would like or bad cells or both. The drug is suppressing the Stem Cells allowing them time to embed but he wants to force them on a tad earlier with me because of the test result and the fact I have MF, which is a difficult condition to eradicate. This should result I them attacking the bits they don't want and hopefully destroying them to eventually leave me with a healthy fully functioning immune system clear of disease.
The crunch is that this action is highly likely to trigger Graft Versus Host Disease (GVHD) which for those that aren't familiar with it is basically an internal battle taking place within between what is left of my old self and my sisters new Stem Cells which are invading my body esp once the damping effect of the anti rejection drug lifts. GVHD can affect the skin, gut or liver in a mild to severe way. Ideally one wants a mild to mid range rash somewhere on the body, usually arms, hands, legs, torso. . It is good to have some GVHD. What is not good is any severe attack esp if it hits the liver. . . .
So that's the next hurdle anyhow. My blood counts are ok but I'm chilled about them for now as they will assume much greater significance in a few weeks when I'm completely off the anti rejection drug. So game on guys, it's a tough one going for transplant option because you have to be prepared for the long haul unlike some ops or procedures where you know in a short time if it's been a success.
I hope everyone is trundling along as well as you can and you are looking forward to a long harsh, cold Winter (NOT). . . Love Chris X Still a slap head and still smiling X
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Hi Chris. Great to see you back on line. Thank you for keeping us up to date with your progress... Well it is a very long road for you, I am so ignorant about this procedure , I thought you would be getting fighting fit, wow it's tougher than I imagined. But your Sis's stem cells have to get used to you and vice versa but those girls little things are tough.. You know how determined we women are.they will get the better of your bad boys I'm sure.
You look good, slap head is very current so no worries there.
We are all rooting for you and sincerely hope the Docs get this sorted asap for you
Thanks Sandy, esp for the gentle hug, as I'm a hugger but not everyone comfortable with it. . Yes I couldn't have done any better than our kids Stem Cells and I'm so grateful to her. .
My wife doesn't mind my slaphead look as she gets the hots when Jean Luc Picard I'd on TV. . I'm sure my sisters cells will be in warp drive once my anti rejection drugs cease. . X
Hi Chris good to hear from you, it really is a long road for you but as we say Onwards and Upwards - keep up the good work
Not so much of the slap head Jedi, looking OK for someone who has been what you have been through. Good to see that you still have that cheeky smile. Have the hospital given you a time scale to your recovery, or is it down to your body? It is all a bit mind blowing to say the least. Anyway thanks for the update good to hear from you, fight the good fight. X
Superwoman, you got it in one there , mind blowing stuff because as a patient you don't realise how much is going on in the background throughout your transplant process. . For instance they have just carried out a 'Chimerism' test on me to determine how much of me and how much of my sis there is using blood they took from me prior to transplant. . Sometimes my cheeky smile belies how I feel but it's easier to smile than frown. X
Yeh we all need laughter lines rather than frowning. don't they have some strange names for procedures, Chimerism, sounds as if it is from Mary Poppins😃
Yeah it does though pronounced C'imerism and comes from Greek mythology to do with an animal part lion, snake, with goats head, connection is that stem cell transplantees are part donor , part themselves for a time but need to be full donor ideally. . . clever stuff x
Boy that is cleaver, should of studied more when I was at school. point is do you feel like a lion or snake? Hopefully not like a goats head, mind you can just visualise 🐅🐍🐐 but just glad you had a full donor in you sister.
Wish I could tell you but haven't quite sussed out exactly what I feel like yet. . If had a choice would perhaps be a bird of prey so I could soar and glide on the thermals. . Bit of escapism. I am so grateful to my sister for giving me this chance xx
Hi Chris, good to hear from you, as always. Been thinking of you loads and if everyone's thoughts and good wishes winging down the Internet to you help, you'll do fine.
Ah Judy, Thanks for replying and keeping me in your thoughts. . I'm still strong and remain positive by and large, just wilt a tad here and there as trips to from Manc twice weekly tiring and gout can be quite painful some days , nights. . But I'm going forward x
Thanks ladies , , no timescale as such but in my mind I got about 18 months. . However I speak to transplantees at Manc who are 2 - 4 years on and still have issues, , some with platelets , others with residual issues from infection. One or two have copped for shingles as soon as they came off Septrin, which I just started today, after 12 plus months. A guy caught one of the childhood illnesses off his Grandkids as he hadn't had all his childhood vaccinations yet, which I will need in about a year.
Cheers Chris - Judy I have several hats as my head is bloody cold !! 😵 XxX
Hi Chris, you are looking good . Keep taking it one step at a time, each step is one closer to feeling better! Your great spirit and attitude will get you through it and we are all with you every step of the way.
Slap heads are cool and hats are fashionable, glad that your smile is still smiling, you're a model for us all! If I ever have to go down the same route as you, I hope I face it with the same courage as you have shown.
Aime I hope you remain well for many many years and don't have to go through it but if you did I'm sure you would meet it head on and give it your bestest shot. .x
Hello Chris I'm new to the forum and even though not liking ending up here, it is sure great to have this place with so many wonderful people to support us. Not too familiar with what you are going through or have been through but I sure wish you a continue road of recovery and many many blessing! Mickey
Thanks Mickey, I have had a Stem Cell Transplant using my sisters cells to try and beat my Myelofibrosis into submission. . Aspects of my journey so far are posted on this forum. Cheers Chris
Hi Chris, it's Thursday here in Oz so I'm sorry this is a late reply! It is a long road indeed, and we have a friend, Bill, who is a bit older than you, and he went through the transplant three years ago. Despite worrying complications after they sent him home, he surprised the specialists by slowly and steadily building his immune system. Yes, GVHD appeared and there were some major concerns. But he just plugged away, doing what his wife told him 😉 and avoiding infection where possible. We are still in touch and he is doing so well...can't risk his old occupation, but he's got new things to do. Just wanted to share and let you know that your attitude is the best drug anyone can take! You're doing a great job. Btw, saw the post about a new hat. Pictures please!! Stay well, thinking of you x Jeanette
Hi Jeanette we blokes do well to listen to our better halves , your friend has battled on and I'm glad he came out the other side. I am hoping to get back to some sort of work in future, but recovery first worry over that later. . Cheers x
Hi Chris great to hear your update. Like the others I had no idea recovery could take so long or be so difficult. Hope complications from GHVD are mild for you and your gout goes away soon. Keep smiling as always. I love the hat! Happy anniversary to you and your wife.
Hope your recovery carries on in a slow but sure way, it's a long road for you, but each corner you turn is another milestone, to mix a few metaphors! Anyway all the best! Happy Anniversary!
Hi Karen, cheers. . As a former decorator I made sure the house was in reasonable shape while I was well enough. We are fans of the feature wall so it doesn't generally take too long to do a room. . Won't be tackling any DAY for a good time as can play the transplant card. . X
Hi Chris. Good to see you looking so good after all the scare stories they told me to put me off SCT! I know it is a long road to recovery but I'm sure your SOH and positive outlook are even stronger than your own stem cells seems to be! I reckon it's that fear of female software that's giving you the problems! Seriously, we are all still rooting for you on your journey xx
Thanks Beetle, not an easy ride but worthwhile in my view to try and rid myself of this disease. . And you're likely right about the female software I hope they zapp my other unwanted cells. . .x
Good to hear from you Chris. It sounds as though you are making really good progress. Take very good care of yourself. I can only imagine what a tough journey this is for you. Keep smiling. X
Hi Jazzy, , I'm doing ok but the next 2-3 months plus are critical as doc is forcing my sis stem cells into production to seek and destroy cells that they don't want. . No one can predict how this will go. . . I'm just going with the flow but am staying home apart from hosp trips to minimise infection risk which would knock me for 6. . . Thanks for your best wishes. . X
Your posts are always so positive. I wish you could bottle that and send to my husband. I hope your recovery is speedy for you and that your gout moves on
Well Headinthesand, , you got choices with life and I try to remain positive, sometimes it's not easy for instance had a bad day, night of pain with ze gout coupled with 36 hrs of a niggling left temple headache which was very much like migraine I used to get all through my 30s. . I did get worn down and a tad grumpy. . But I bounced back.
I don't think I'm particularly inspiring as I see it in others but I guess they think same about themselves. In hosp I had a pic up of a lady Martine Wright who was sat just 3 feet away from one of the 7/7 bombers, her injuries were horrendous as you might imagine. I'm getting a chill just writing of it. Anyway when things got a bit tough for me I looked at her smiling face and it lifted me and pushed me on. . . Brave courageous woman.
Chris x
Hi Chris just back from a few days gadding about in Berlin, treat from my brother, so only just seen your posts. It is always so great to hear from you. I am pleased things progressing ok for you. It really is such a long hard road you have been travelling and as ever I am in awe at how well you are dealing with it all. It is lovely to see you looking so perky! Hope that your gout clears up soon my other half has had it and told me at the time in no uncertain terms how painful it is Not what you need on top of everything else.
Keep us all updated we look forward to your posts. Take care of you and your family Lizxx
Ps. Reckon you should publish all your posts in a book, they are so inspirational and provide such useful info for those travelling the same journey.
Thanks Liz, Berlin eh, would suit me as an interesting place to visit, not far either. .I must confess I have turned the air a shade or two of blue with the old gout throbbing away in my ankle / foot, , it can be hard to bear when it decides to go on the attack.
Thanks for your kind words Liz they mean alot. . And like Ive said I don't see myself as inspirational, but if just one my posts helps anyone at any point that makes them all worthwhile in my book. . Love x
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