I fully intended to keep you all updated as my transplant progressed but it didn't work out that way!
Honestly this is the toughest thing I have ever done. I am feeling better as time goes by but my blood counts keep raising my hopes then letting me down again - for example my neutrophils rose steadily to 0.9 but have now dropped back to 0.5 so I am feeling a little dejected and going home seems like a distant dream.
Apparently everything moves more slowly when the original disease is MF but anxiety is kicking in at the moment.
Sorry to sound so negative!
Love to you all, Jennie
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So sorry you are going through such a difficult time. Seems like the road to recovery is fraught with many challenges. Hang in there. I’m confident that things will turn around for you soon. We are all here for you.
Ah Jennie what a brave and honest post. So sorry to hear your recovery setbacks. Really hope over the coming weeks you start to feel better and stronger and everything crossed for you getting home soon. You've done so well getting this far and just hope the next stage is more bearable. Good luck and sending lots of love
I know exactly what you mean about not being able to keep us updated on your progress. I know that most days just pass in a blur and sometimes it feels like one step forward and three steps back. But you are improving and you will get through it. I’m almost 3 months post transplant and it seems like years ago. Progress is slow but you will get there and you’ll look back at the experience soon enough wondering where the time went and marvel at how far you’ve come. I know we are all different and I know that so far I have been extremely lucky in my recovery but I’m feeling much better than before the treatment and I’m sending love and wishes that you will be feeling better too. All strength to you x.
Nothing significant to report other than a little nausea. I did have really low haemoglobin for several weeks that required regular red blood cell transfusions but the counts have stabilised now although they are still a bit low which does affect my stamina.
He hasn’t said as much but he is very pleased with my progress. I have consistently recorded 100% donor cells in the chimerism testing and all other tests are showing consistent improvement.
I had CALR mutation but although this is considered lower risk in myelofibrosis I also had ASXL 1 mutation, which is high risk for progression to leukaemia.
Glad you decided to check in, especially since you are feeling negative right now. The slow pace of recovery would be very frustrating as well as the ups and downs. Unfortunately, that is how these procedures often go. A stem cell transplant is a really big deal and recovery takes time. Hard to keep in mind when struggling through the process though.
Please know that you are not alone and that there are a lot of people rooting for your recovery. We do all want to know how you are doing regardless of whether it is good times or bad. You will have our support no matter what.
Hi Jennie, thanks for the update. Have been keeping my fingers and toes crossed for you. Sending your new stem cells some good vibes from New Zealand. Hope you get home soon. Hang in there, Simon
I wish you continued steady improvements and pray that you get to go home soon to enjoy your life with your new and improved bone marrow. Much love to you from around the globe. (Also I am sorry you have to eat hospital food - the worst. )
I was thinking about you , glad to hear from you. Dont worry , this low phase will soon pass by. Take good care of yourself and stay motivated, keep chatting and talking with dear ones !
Hi Jennie, so good to hear from you and thanks for keeping us updated on your progress.
It must be very difficult to be in hospital for such long periods and can only imagine how much you miss home. The two steps forward one step back manner of your recovery must be disheartening but you are making progress all the time, albeit slow. As Hunter says everyone on here is rooting for you. Take heart Jennie, you will make it through. 😍
Hoping you gain from all the best wishes here, some inner strength and warmth. My wishes include that those naughty neuts get building and raise in numbers. Hang on to your lovely dream of home, I am sure it will be worth the wait.
Thanks for all your posts and honesty, which returns the strength we wish for you.
Sorry to hear things are not progressing as quickly as you would like. Thank you for sharing your journey, it's very brave of you. Fingers crossed the moving forward is more than the little slips backwards. You are in our thoughts and prayers. As someone once said to me - when the dark clouds gather, uninvited and unwelcome, the sun continues to shine and one day there will be blue sky.
it’s good to hear from you Jennie. I’m sorry that you are feeling that recovery is not happening smoothly or fast enough. We are ALL rooting for you and I hope our combined positive vibes will get you to the point of going home very soon. Stay positive as I’m convinced that helps. Best wishes,Jan x
Dear Jennie, thank you for the update, I really appreciate your effort to keep us informed although you are feeling a bit down . Hold on to the more positive feelings, the way is long and hard but going home eventually will be wonderful. If you felt your ears tingle it's the good vibes that we are all sending you and it's a planetary manifestation !
Good to hear from you, but so sorry you are having such an awful time. I guess the operation itself is just one stage of the very long process and you have been so tolerant with it all! I do hope that you will soon turn the corner and the bloods will improve soon. Very best wishes.
I do hope it all works well for you; it’s difficult to imagine just how awful you must feel at times. I have PMF, am 71 & BMT is being discussed as an option for me. I’ve looked at stats & feel this isn’t a route I want to take; especially as I live alone. You’re just re-affirming my thoughts. You’re very brave, I really wish you well . Susie 💞
Hello Jennie, sorry to hear you're having a rough time and its understandable that you are feeling low. We can only imagine how you are feeling but keep plodding on and things will improve I'm sure.
II realise when I say that when I say it’s a marathon not a sprint that you will probably want to come and slap me as you have heard it so often, but it is. The important thing is that you are on the road to recovery and need to be positive. It is a very tough ride and I felt like I had been run over by a steam roller after mine. Some sail through others take a lot longer. I look forward to meeting you one day when you are through it. Keep watching those counts rise. Best wishes Chris (the Princess Leia version)
So glad you have posted the update as you know we are all here for you with hope and prayers that your recovery will soon make quick progress and you will get home very soon. Hang on in there, we’re all here to uplift you. Love and prayers, Fran.❤️🙏
Hello Jennie , , Thanks for posting an update. Just want to endorse what Chris above says and to add that i was in a very similar postion with fluctuating counts barely above zero for weeks but this didnt prevent me from going home though i needed an extra week , 5 in total , due to increased liver counts. I must admit i was literally pacing the room counting my steps to 500 , 1000 etc (no Smart watch!) and would of walked up the walls and across the ceiling if i could of just to keep active.
In fact my Graft didnt come to life for some time after i got home and i was due a top up of Stem cells but it suddenly kicked in and my counts shot up. So please dont despair.
Sending my very best wishes to you and your husband.
Chris x
For information i got a pop,up message informing me that this platform doesnt support older versions of certain browser on my tablet and i needed to disable predictive text which was causing my word repetitions . Its a nuisance having to type every word but its solved my problem.
I remember the days post transplant dragging, being alone much of the time in the isolation room can seen like a form of solitary confinement. Sending you all good wishes for a smooth recovery.
I am sorry to hear things are not going as fast as you might hope and sorry to hear anxiety is troubling you. I am no expert on transplants but follow some others having them. It’s good a few others who have had transplants and have chipped in, my understanding is it is a bit of a marathon and will have its ups and downs for a while, somebody once said to me life can be like running a marathon but as with running a marathon best not think too much about the 26 miles , maybe best think about the next 200m , ie take it a day at a time. Similarly it would be amazing if you were not having some anxiety, it’s a major event and major trauma to the body, as with other operations it’s common to feel anxiety and change in mood. As with marathons it can feel like hell but try to keep a focus on the potential end result. Easier said than done by all us sitting at home but I hope that helps a bit. 😀
hey, you’ve had it done. You are on the home stretch.
Yes you can feel down , you have every right to feel that way. There is nothing you can do so just try and chill whilst those pesky neuts rise.
If you feel a moan then post. What ever you say or however you feel - post! You know that this site is brilliant for people to express their feelings as we all have an incline has to what you are going through
I say incline because I have ET. I really wonder if I would have the strength or fight to go through what you have been through.
You’ve done it!! Just remember that You’ve done it!
Heavenly Father, I lift up to You our dear friend Jennie and I am asking for your help, with this difficult procedure of stem cell transplant and I am asking for Your healing Holy Spirit to shower all over Jennie and heal her and make it easier for her to get through this difficult situation. Send her your love and compassion so she will recover fast. In Jesus name I pray. Amen
Thanks for posting. God bless you. You are brave and strong. Wishing you the best including steady improvement from here out. Big hugs many here who care. It’s a good place for us all to express ourselves grateful to you and this forum. Sending positive thoughts your way
Sending you the Very Best ,Jennie you are a brave strong lady,soon you will be feeling much better ,of course you just want to go home,I really do empathise with that feeling.Keep your positive mind and you will get over all of this hard time.E hugs and Very Best to your hubby too.,you both are strong dealing with what must be the most difficult situation.😍
You have takcled such a huge challenge with great hope, grace and dignity and as so many have said on here already , we all encourage you to keep going, you will make it through, although I am sure it seems like a very long road and you long to be home. May that now not be too far away, a goal and a step at a time, and you have every right to have your down days, but we pray they will soon get fewer as you start to gain more strength.
Hi Jennie , sorry you are feeling low. Hopefully will improve very soon. Always look forward to hearing from you so big virtual hug for better days xxx
Thanks for looking in & sharing an update. As many have said we’re all right behind you. It’s impossible for those of us that haven’t been through this to fully understand how you’re feeling. Please know that we’re all thinking of you.
Sending you a big hug of hope and peace. You are brave to have under gone that treatment. You now are tasked with staying brave. I don’t quite understand what your numbers mean. But am familiar with your feelings. Please keep working at it. Thank you for sharing with us your journey.
Thank you for your honest update. We are all pulling for you and know things will get better. As many have stated it is literally, one step at a time and you are so brave!
Thank you for posting Jennie. I've been wondering how you were doing. I wish you all the best for better blood results and a swift return home. It's hard to be first hopeful and then disappointed all the time. Maybe the thing to hang onto is that you feel better than you did.
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ET+JAK2 and about to start Hydroxycarbamide
Thank you
Sad day...progressed to MF
Off I go Friday for surgery to replace my knee ,,
