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MF transplant update - days +21 to +40

Hi All,

It has been 20 days since I was discharged from the BMT unit. It has been lovely to be home. My new mantra is every day at home is a good day. Apart from my blood production, which went on an unscheduled spring break immediately upon leaving the BMT unit, everything else has continued to improve - eye sight issues resolving, eating easier, appetite growing etc. Keeping up with the medication schedule, eating, and many hospital visits (5 days this week) has been like a full time job.

I have decided to include day numbers in my updates. When looking back over the past posts of others it can be difficult to workout when things happened. This site currently abbreviates the time period shown for a post to the largest available unit, i.e. from so many days past, to so many months past and then to so many years past. For those readers who are unfamiliar with transplants - Day 0 is the day when a transplant patient receives the donor cells, Day +1 the next day etc.

Something I have very much taken on board is a comment a work colleague made to my wife. It was that we continually keep wishing our lives away. I can't wait until I am 5 and can go to school. Can't wait to go to high school etc. etc.

Despite that, I could not help but look forward to November. It is a special month where I enjoy spending far too much time reading the ASH papers. It is also the month where I say thank you to all the mice that have been sacrificed over that past year in medical experiments to help the experts better understand our conditions and the future treatment options.

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The rest of this post is really targeted towards future travellers who are looking back at how another transplantee progressed...

On Day +17 a neutrophil count appeared on my daily blood report and the process to get me ready for discharge was commenced. IV drugs were replaced by oral ones and the feeding tube removed.

On Day +19 my neutrophil count jumped to 0.5 and the other counts were looking good as well. Haemoglobin 99 following a couple of units of red blood cells and platelets 17.

I was discharged the next day. I quipped to my wife that the regular blood test was not done that day in case the large jump in neutrophils the previous day was an aberration.

My first blood test as an outpatient was on Day +22 and turned out to be my best one so far. Neutrophils 0.8, haemoglobin 95 and platelets 30. Yippee!!

After that my blood production decided to go on an unscheduled spring break.

On Day +27 my neutrophils were down to 0.35 and haemoglobin 66. My platelets continued to climb to 41.

Regular top ups with 2 units of red blood cells followed. The occasional tear drop cell was noted on my blood report. My platelets continued to be the good count staying in the 40 something range without any need for support.

On Day +38 the neutrophil count disappeared and my haemoglobin was 54. The usual 2 units of red blood followed.

On Day +40 my neutrophils were 0.17 and haemoglobin 60.

By the way, most MF transplantees do eventually engraft. It just takes longer for MF transplantees and sometimes requires some extra intervention.

On the eating front, an unexpected success was taking a course of Nilstat. I had commented at a regular check up that the taste in my month reminded me of oral thrush. It is side effect I have developed a couple of times in the past following treatment with antibiotics for unrelated conditions. The Nilstat resolved the taste issue and my eating greatly improved.

Also bloods have been taken for chimerism testing. Results will take a while, not that that matters, I am after all too busy enjoying today to get caught up in the 'I can not wait trap', or perhaps I should say I am trying to hard to avoid that trap.

Cheerio for now. Best wishes to All, including future travellers ...Simon

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Well done Simon, you sound very ‘chipper’ . Look after yourself and I wish you a continued and good recovery.

Very best wishes

Judy x

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Thanks Judy

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hi and well done! is your transplant hospital near you or can u go to your local dgh for some of this stuff? just thinking about all that hospital visiting.....

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Hi Jane, my district general hospital contains the transplant unit for the South Island of New Zealand. I am fortunate that the unit is so close. The area of the South Island is about the same as the area of England and Wales combined. Rather large difference in populations. Hope things are going well for you.

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Thanks Simon, I know from other forums progress is two steps forward, one backwards.

What was the state of your marrow at point of transplant? This sounds like the greatest dilemma, the lower the fibrosis the better but don’t want to start process too soon.

Thanks again for updating us. Great to hear you in such good spirits.

Best wishes Paul

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Hi Paul, my marrow was highly fibrotic way back when I was initially diagnosed and was a risk factor I considered carefully when making the decision to go to transplant. Even highly fibrotic marrow can improve after transplant.

ac.els-cdn.com/S10838791140...

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Hello Simon Nice to hear from you I hope you continue to make progress it all takes time, look after yourself, Bye Gill

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Thanks Gill

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You sound like you’re doing really well and another courageous trooper like Chris. Every best wish and E hugs, keep up the good work for a speedy recovery. Kindest regards Aime xx😸

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Thanks Aime. Delighted you are still posting on this forum and all the best with your new diagnosis.

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Thank you, kindest regards Aime xx😺😺

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Hi Simon,

Very encouraging to hear of your continued progression. I find it very touching that you spare a thought for the sacrificial mice too!

Best wishes going forward

Mary xx

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Thanks Mary. It is quite amazing what the researchers are able to achieve. Quite mind boggling. The mice are unsung heroes.

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🐭🐭🐭 xx

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Thank you so much for sharing this with us.

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Thanks for your update Simon, well done! Keep up the good work! x

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I really appreciate your sharing your SCT experience, Simon. As an MF sufferer, this is something which is very much on my mind - my haematologist says I will probably need one at some point.

I do hope you continue to keep well and I look forward to following your posts.

Best wishes

Paula

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Thank you so much for your post. It’s lovy to hear you are progressing well

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Long may you continue to progress on your brave & arduous journey.best wishes tina🤗

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Excellent progress. I had 30 packs of bloods and 10 platelets, post transplant, before Sarah got moving and producing my blood cells. Lots of things tasted awful for a while, even tea, coffee and my favourite home cooked meal , but the tastebuds settled eventually.

Onwards and upwards avoiding anyone who might be unwell or may have had contact with anyone who is unwell!

I used to have three trips a week to hospital, two for checks and one for bloods. Always found it strange that the waiting room for checks was in an isolated part of the hospital while the one for bloods was in the general haematology section where people could be coughing and spluttering. I used to stand in a corner to keep my distance and make sure I was kept away from others while I had my bloods.

If you had ATG don’t forget the rabbit that produced the cells for your conditioning. Always hoped that it survived with just a headache!

In keeping with your post, today is day 2,798.

Chris (the Princess Leia version, body driven by the lovely Sarah Gardner)

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Hi Chris , I too found it odd that straight from SCT when I my counts were very low as my Graft wasn't taking I was back in the general clinic with everybody else most of whom were there to monitor their blood conditions or were well on from SCT and as you say a number were coughing and spluttering. And not always sitting away with a mask on but tucked in amongst us all. Like you I would try and sit out of the way and wore a mask to help. Cheers buddy . . .

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Hi Chris, thanks for the encouragement and very useful information to go forward on.

I was getting a little concerned that my fang teeth might grow at the end of October and that I would develop the urge to go hunting for blood at night. Nice to find out that I am not the only one to need lots of the red stuff. MF transplantees are quite rare around here so I stick out as being quite different from the other types of transplantees who are currently going through the process here. I buddied up with a MDS transplantee in the unit. She is bounding ahead in comparison.

I did receive rabbit ATG. Would be nice to think that the collection of ATG is something as benign as milking a cow. Somehow doubt that. Will add rabbits to my November thanks list - thanks!

+2798 is a mighty impressive number. Long may it keep growing! ...thanks, Simon

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Hi Simon, yes it's a real roller coaster for the blood counts out of SCT, yours are much better than were , I recall needing my line changed from Hickman to a stronger Tessio Line 6 months after SCT and my platlets were very low so the evening before into the early hours I had 5 bags of the chutney stuff to support the procedure.

I didn't have a Chimerism (to check what percentage of you is the Donor) test until much later as my Graft didn't take first off and I was due a top up of Donor Cells but Hem stopped my Immuno-suppressant to 'force' the Graft into life and it worked. He told me you need a good strong Graft for MF as it's a tough cookie to deal with.

Pleased you are making steady progress and long may you do so but remember , ,as my Hem continually reminded me, , it's early days . . So as Chris says avoid poorly peops and don't let your guard down.

Cheers - Chris

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Day what? 😀

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Don't have a scooby , I'd need work it out but 3 x 365 +roughly 2 months ish is around 1155 I reckon. . . 😨 . . .

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Yes just double checked 1155, not a bad guesstimate 😁 , thanks coz it's not something I keep in mind as you could likely tell. . .

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1,155 is great. Well done. I simply google how many days my Day 0 date to current date as those leap years can throw it out!

The only Myelofibrosis transplantee I could find online going in was a Canadian called Gord Kaster celebrating 20 years in April 2012 and the lucky man got his daughters cells in the experimental days!

Every day is a win.

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Yes were a rare breed , but what are the chances of that guys transplant being a lasting success, that's bloody awesome. Mind you I reckon yours is and certainly an inspiration and a tough act to follow for myself. Take care and keep living it large my friend. . .

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Hi Chris,

If its playing by numbers, then I'm at 1176.

GvHD(liver) had a 'serious visit' after ~350 days and stayed around until ~850.

First time l've counted the days in that fashion.

Take care.

Gary

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And hopefully the last time you ever will Gary. . We're all lucky so and so's !!

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Oh dear Chris, and here was me thinking that my counts were not very good. You certainly had a rough time of it!

I was thinking of you when my consultant wanted to stop my immuno-suppressant (350mg ciclosporin bd) on Day 34. I haggled with him to tapper it down. In the end we agreed to half it. The registrar who was listening into the conversation was rather stunned that I was haggling, but I had your GVHD experience firmly in my mind. When on Day 41 he brought up stopping it completely again we agreed to half it again to 100mg bd.

Thanks for your good wishes and advice. I am heading back to the hospital again today for a check up and blood top up. I will also be in waiting rooms filled with everyone else attending a general clinic, on watch for those who do not look very well.

Thanks and as always best wishes for your on going recovery ...Simon

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I was winding down cyclosporine for eight months although it was expected to stop a little bit earlier but some minor issues meant I was put on steroids and the demise was delayed. Suspect would have been seven months.

Chris

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Cheers . . I'm still on 50 mg ciclosporin 3+ years later. . As for bloods like the other Chris I too had upwards of 30 bags of red and 20 ish platelets , one night my Platelets were 10, I had 2 bags late on and the next morning lo and behold my Platelets were 10 !! . Doc reckoned my massive spleen was soaking them up. I only had my Lines removed earlier in the year, most are out within a few months.

My counts now are : WBC 2.2 , RBC 4.07, Hgb 133, Platelets 99, Neutrophils 1.64. So none within range but good for me. So Simon don't get too hung up on your counts just yet. 😀.

Keep haggling.

Chris

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Will do ...thanks, Simon

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Simon: thank you for all this good information and best wishes for your continued recovery.

Kim

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Hey Simon... :-)

Stay strong, I am certain that being super positive is an essential requirement in our recovery...

Please keep us posted...

Best wishes

Steve

(Sydney)

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Hi Simon, thank you so much for sharing your story with everyone and for being to clear, I am sure it will help a lot of people who are on the journey. Take care of your self. Maz

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