Hello Everyone, , especially to my friends who have supported me through thick and thin (mainly thin!! ) these many months past , , I hope you are all as well as can be. I would love to be able to report I'm jumping through hoops but not quite as yet.
Those of you that know me will know I'm not given to moaning a bucket about my lot following my BMT but . . . . here goes LOL . . I am a tad frustrated that my progress to recovery has been over shadowed by my experience with Graft Versus Host Disease - GVHD. Especially how it has affected my eyesight which nothing presently seems to be able to correct. I guess I have about 50-60% vision and everything is blurred. This I find the most frustrating aspect.
I am gaining strength albeit slowly and my mobility is gradually improving. So that's positive. My learnéd Consultant has put me back on an old friend which I was taking prior to Transplant , that being Ruxolitinib. He is optimistic that it may help alleviate my GVHD in time. He was concerned it may initially lower my already low Platelets but in fact they have come up from 50 ish to just over 100 in a couple of weeks. Most of my counts are quite reasonable given that I'm on a few drugs which are quite toxic to bone marrow which demonstrates that my underlying system must be fairly robust. Ive started on a low dose to see how it goes and am hopeful that I can get fully off steroids in the next couple of months. This in turn ought to bring my blood sugar back to near normal levels so I can reduce my insulin dependence or abandon it completely. Bring on the cakes. . . 😜.
I will have to get a haircut soon as my lovely wife says I look like Wurzel Gummage with my Tattie head on. Very apt I'd say but I'm waiting for warmer weather to bless us.
Take care and best wishes to you all. Chris x
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Chris, it is so good to hear from you. You seem to have been through the wars - and that's not maybe. But as always you endeavour to keep your spirits up. It can't be easy - it must be like being in a hurdle race, and the hurdles just keep coming. But if anyone can get over those hurdles I believe that you have shown it is possible, by keeping positive. God knows how you have done it, many would have fallen. You are an absolute inspiration to us all Chris and I want to personally thank you for being so honest and upbeat about the pitfalls. I believe your story goes to prove how vitally important it is to have such wonderful supports, especially the good wife!! Good luck to you bothChris, hope things continue on the up...... Janice
Hi Chris. It's so lovely to hear from you. I'm pleased that progress is there, if slow. I was sorry to hear about your sight, but I hope that will get better in time. I think this whole site respects and admires your courage and patience over these past months. Like everyone else I'm sure, I'm thinking of you and your wife and willing you on to healthier times.
Great to see your post Chris !As always,inspirational no matter how difficult things are for you. Progress tho slow,your strength of mind is pulling you thru. Best of best wishes to you,wife and family,keep your positivity,keep the faith, Sally xxx
Hi Chris, so good to hear from you. May I be cheeky and say you are a tad plumper than you were - your wife's spoiling you! Sorry to hear about your eyesight but you will get there. You have come through so much already and look at you - plumper and I agree with your wife - hairier! Those hoops are just round the corner waiting for you to jump!
You take care, big E hugs to you and your wife. Aime xxxxxx😺😺😺😺😺😺😺😺😺😺😺
Hi Aime , , , I think the steroids have something to do with my moonface. , , 😉. But my appetite is good and my wife feeds me well. Also Ruxolitinib can boost ones appetite so as long as any extra weight goes anywhere but face and tum I won't mind. I will need larger hoops !! x
So lovely to hear from you. Your positivity always shines through. It must be over 18 months since you transplant and you and your dear wife have had to cope with so much but I am sure you will get through this. Your sisters lady cells are obviously made of strong stuff. When I first joined this forum 5 ish years ago you had me laughing out loud at your posts, you were a great pick me up when I wasn't feeling that great. You are truly a remarkable man! And, I used to love Worzel Gummidge, shame you can't twist your head off and get one with better eyesight!
My very, very best wishes to you Chris. Keep fighting we are all behind you.
Yes Judy a cracking eyesight head is what I need right now with or without hair. My BMT was in Sept 15 and there was real concern that my Graft was going to fail so they stopped my immuno-suppressant and forced it to either make or break. I was ready for a top up at very least or have go through it all again. But it kicked in and went beserk hence my severe GVHD. Ah well you can't have it all ways up. Thanks for your kind words. X
Chris, I wish you well with the ruxolitinib, it's very reassuring that it's helping with the platelet count.
I see where you're coming from with the steroids. My husband has taken daily steroids for many years for health issues, he was diagnosed with steroid induced diabetes two years ago!
I really hope everything works out for you and that you regain a decent quality of life soon.
Woohoo !!!!!! Great to see you back Chris, even though you have been through so much you are looking good even the dodgy hair does not look to bad at all, like the beard and tash look great, although Not sure how your wife feels, maybe a bit tickle ? I think it makes you look very rugged, Sorry to hear that your sight is still a bit of a problem hopefully it will correct itself soon.
As many have said on here you are a true inspiration to us all, you never have given in, you are truly to be admired for that. It really does sound as if you are on the upward path.
Hi Chris great to see your post nice to hear you feeling better and hope you are back to full strength soon best wishes to you and your good wife Poppy 6060
Hello Chris. How lovely to hear from you. Great post, I can see that ray of sunshine coming through the clouds. I am so happy you have some good news......you certainly are looking much better....never mind the hair, the smile is what we want to see.
My very best wishes to you and your wife......formidable team.
Dear Chris, I'm amazed you haven't given up a hundred times and haven't been wallowing in well deserved self pity for months. One obstacle after another keeps getting in your way but you keep bravely fighting through every one of them. Not being able to see has to be horrible. I can't even imagine how difficult all of this has been for you and your wife. Please know that all of us care about you immensely and send you every ounce of strength possible to help you as you battle past these big problems to a time of relatively easy living. I hope that happens really soon. With great respect, admiration and fondness, Katie.
Thanks Katie, , there are times when I question whether the fight is in me but then I sing that one hit wonder Tubthumping by Chumbawanda "I get knocked down and I get up again" and I think of my wife and family which spurs me on. The limited vision is hard to cope with but my friend at clinic has GVHD in hr lungs and is on oxygen concentrator 24/7 so I count myself fortunate. . . Cheers
Hi Chris, you certaintly are one of our great warriors ! so pleased to see you are back . i have to say dispite what you have been through,, and still going through you look very well, so onwards and upwards . im sorry to hear about your eyes hopefully this is temporary , i can relate to this a little with my glaucomma , removing cataracts helped me in my case . we all on here seem to live from one blood test and consutant visits to the next , and what changes these may or may not bring ..albeit good or bad none of us know eh . But you are a credict to all of us to show us everything is possible with determination, spirit ,and good Doctors etc God bless you and all the best for continuing good health Holly 🙏
Hello Chris how good to get an update from you - I think all here will agree you are considered a dear friend and we all root for you in recent times. Sorry the eyesight is a problem - hopefully likes other issues it is just going to take more time for that to start to improve and I can imagine it is both frustrating and unpleasant. But good good news re your counts and being back on Rux - it does indeed show the underlying strength of your body fighting back and although it is along long road for you, goodness think of progress that has been made - you have achieved so much and getting better blood counts is good proof that things are moving in the right direction - slow but sure - and your photo definitely looks more like "you" this time - all good signs Chris - the strength of our physical self to fight fight is quite amazing really isn't it and to overcome being so low - so just keep going it will continue to move along for you - and as always we are all sending you support and hugs to help you along - very best wishes Jill
Hi Chris, great to hear from you. We all wonder about you daily (and say a little prayer for you as well). We're all, mostly, trying to get our platelets down and here you are trying to get them up 😳😄 Pity we can't throw some your way. Regarding the steroids, if you come off them you won't get into the Russian Olympic team! 😂😂 Although you have plenty of others to fall back on! Wishing you well, your progress is a little slow, you're going the pretty way instead of straight forward- but that's the lady cells - we're not good at directions! And yes you're definitely hairier so something is working in you. (Unfortunately the same thing is working in me - given time I could beat your moustace and beard 😱😱)
Anyway be sure we're all rooting for you, and we all hope that helps you
Thanks for the chuckles Lizzie, , I have relatively normal hair growth after all this time , it's just started to grow back on my legs. It took months for any facial hair to come but I'm shaving it every week now. Wondered if I'd get as much growth with my lady cells. .
Lovely to see your post. Sorrento hear that your vision is not great at the moment. Hopefully the Rux will help with that over time. In the meantime mega font on your phone!!
Hopefully the warmer weather will kick in and a bit of sunshine will give you a boost too.
Wishing you daily improvements, even if they feel small...they all add up 😁.
Oh Chris, just so delighted to hear from you again....just, along with many, many others, think constantly of you and wishing you well all the time. Can imagine it is not only a battle, health wise, but also re will and determination, having to face so many problems, and can guess what a nightmare most have been/continue to be, not least the eyes. Your description of being 'a tad frustrated' is probably a millionth of what you really feel, and - at risk of boring you again - just salute your amazing courage and good humour and patience. And your brilliant wife, too. Do let us see a post Wurzel haircut, won't you! The very best of good wishes, prayers too, Tinkerbell13
How great to hear from you Chris, and to see you looking better than the last time we saw you. I can't add much more to what the others have already said - you must know by now what you mean to us all. I really hope that your sight improves, I can only imagine how frustrated you must be. Take care of yourself and good luck with the rux, I hope it does the trick.
Karen xx
Ps. I have always had a soft spot for Worzel Gummage!
Hi Chris --- Great to hear from you!! - I'd been wondering how you were doing, and had thought about posting a message to ask - so I was glad to read your post this morning. I hope Rux does alleviate the effects of Grant Versus Host Disease. I'm so sorry to hear about your eyesight, that can't be much fun. You look well, and what a thick head of hair! I hope there are good times ahead - all good wishes to you and your wife. How is your grandson?Jean from Winnipeg
My Grandson and Grand-daughter are doing really well , we had a visit from them recently. They will be 1 and 3 in May so I'm hoping to go to their little party celebration. It's a short trip by your standards being about 2 hrs drive. I will see if my Sister can take us. Hope you are ok Jean. .
Dear All Thank You for your responses which as ever spur me forward. . I will re-read and answer a couple of your questions, comments directly. As for coping and continuing the fight I have my moments when I think it's all getting too much but then I think about the poor souls who are given no hope and those I don't see in clinic any more.
Many of you rightly mention my rock of a wife, who would have thought when we made our vows in 2005 how meaningful they would become. It is one of my ambitions to renew these vows when I am fit enough. Having a caring supportive partner is half the battle though the impact upon them cannot be under estimated.
I know I've posted and continue to post most of my experiences but please don't let it affect any transplant decision any of you might face. Opting for transplant is a bit like being Indiana Jones in The Last Crusade where he is standing on the ledge of a deep ravine with no visible means of crossing. He has to believe and step forward in a kind of leap of faith and the stepping stones suspended in mid air appea to him.
I am hoping my sight will improve it won't be for the want of trying. I have plugged tear ducts, hourly drops and immuno-suppressant evening drops. And if the Ruxolitinib kicks butt who knows. It's easy to take ones sight for granted until you struggle to see properly.
I too enjoyed Wurzel, with Jon Pertwee, Una Stubbs and I think Babs Windsor was in it. Be late 70s I guess, how time flies eh? . Good clean family viewing.
Good to see you and the 'force' are still here to guide and inspire us all...
So jealous that you guys are coming into your warmer climes over there. Here in the antipodes, we are just beginning our colder part of the year. Up till now my exercise routine has remained fairly consistent, but unfortunately, the cold and I have a mutual dislike for each other... Nevertheless, through my new ketagenic diet & my exercise, I have thus far shed 15kg, and I am still hoping to lose a further 10kg in circa 12 more weeks. This will mean that I shall have to rely more heavily on maintaing my diet, in the strictest sense... Aaarrrrrgh...
Wow Chris your platelets are so low... My platelets are still hovering on the high-side of 800s however, they somehow seem stable just the same... I am still on 25mg bd, and at the commencement of the extra 5mg bd, my platelets initially dropped by 119pts, then bounced back up by 52pts. Although, my last report is trending in decline, however it also noted a significant drop in my Haemoglobin to 117 from 135 previous last count, (Hct to 0.35 from 0.39), and there is a pronounced level of aniscytosis:
"What is anisocytosis and poikilocytosis.Anisocytosis means that your RBCs are unequal size--indicating that some of your red blood cells are either too big or too small (usually caused by some type of anemia). For instance, iron deficient anemia will usually cause cells to be smaller than normal."
These days I also have a host of bumps and blemishes all over my cranium? Have you, or has anyone else for that matter, ever experienced this symptom? I smell like a detol bottle because I keep scratching them...
I do seem to recall that it was happening prior to my commencement of Ruxolitinib. Hence, it may be an aspect of my overall MPN condition?
My memory suffers some days more than others, and I wonder too if my eyesight is also beginning to fail me more than usual. My short-sightedness seems to be progressive... and I may be suffering from some internal bleeding...? My back pain is bearable but I am apprehensive that it will now exacerbate during the colder months...(?) I am already having trouble rising from my bed, again...
I am also just completing a short, online university course, as a warm-up to doing my masters in Human Rights. I was concerned that I could not manage the high levels of stress over 12 weeks, and although I have had my moments, generally, I believe I have faired reasonably well... But best wait for official results I guess...
By the way, I think your hair looks great Chris...
As always so good to hear from you and you look so chipper even if you don't feel it. Your smile says such a lot and I like your hair! As you can tell we think of you such a good deal and your family too. Life certainly does give us surprises really - I am still on Rux and coming up to my third year and I bless it daily. I hope it does the trick for you.
Aye Cheers Linda, , good to hear someone praising their drug of none choice for a change. I was eternally grateful for the Hydrox as it suited me and kept me going for years with few I'll effects. I tolerated Rux well last time on it but I wasn't taking it alongside a list of other drugs, however apart from perhaps feeling tad more tired I'm ok thus far.
Linda it's good to know folks care and in turn I think of many that use this Forum regular or not so. I might not post too often but I keep a watch on it.
Really lovely to see you back. As many have already said, you are truly inspirational. I hope that things continue to improve for you, Chris, but it's clearly pretty tough.
You look really well Chris. So pleased to hear that things seem to be going in the right direction finally, as you have had a tough time. I hope you continue to make good progress. take care
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