Update on My Transplant Journey

[Hatchie]

Hey everyone, it’s been a while — just wanted to share the latest update. Unfortunately, the international donor who was a match has pulled out. The next option on the table is a haploidentical (50% match) transplant with a family member.

As always, there’s another twist. The potential donor has tested positive for inactive tuberculosis (TB), which would typically make them ineligible to donate. However, because there are no other available options, I’ve been given the choice to sign a waiver accepting the risk — including the possibility of contracting TB, which could be quite serious in my situation.

If I decide to go ahead and sign, the transplant is set to proceed this week. If I choose not to… honestly, I don’t know what the next step would be.

Nothing about this process is ever simple.

[dbus1417]

is it possible to try and restart some kind of treatment while you wait for a better match? Maybe another trial?

Can they evaluate the stem cells for TB in between harvest and transplant? Wouldn’t the TB also be inactive for you since it would be importing the same immune system? I don’t know if it’s that simple.

Hopefully they can provide some insight or options. I am praying something positive develops soon. Hang in there.

[hunter5582]

Sorry to hear about this turn of events. It is hard to know what to do. Please keep us filled in regarding next steps. All the best as you move forward.

[LFCLove]

Hi matey, “never rains ….” None of this is ever easy and some of us have harder paths to tread. I wouldn’t try to advise other than to listen to your team and make the decision you feel is right for you..

Whatever you decide, we’ll be here for you.

Keep strong matey.

G

🤓

[lizzziep]

Just wishing you well in whatever decision you make.

[Plavers]

you’ll have us all wishing, praying and cheering for you Hatchie

[FreemanSaviors]

Thinking about you Hatchie.. keep strong, talk with your team and never give up.

[Purplechoclover]

Its always one thing after another. Keep strong and do what is best for you 🌞

[RoundTheWorld]

Sorry to hear it is so complicated. Presumably your medical team can't give an indication of how likely they think it that a less complicated match would arise again / in what timeframe.

Wishing you all the best.

[Hatchie in reply to RoundTheWorld]

I'm have better odds of winning the lotto than finding a better match after 3 years looking.

[RoundTheWorld in reply to Hatchie]

Sorry to read that. How incredibly frustrating that the original donor option disappeared. Wishing you all the best with whichever way you decide to go forward.

[azaelea]

Sorry to hear this. wishing you well in this difficult decision and hoping and praying for a good outcome.

[saltmarsh]

Really sorry to hear about this. Not an easy choice but I would hope a doctor would be able to help you weigh the risk reward. Best wishes going forward

[WIL2US]

We are thinking of you. It sounds like a difficult decision. Best wishes.

[Minify]

What a difficult decision for you! I am thinking of you and sending hopeful wishes. Please keep us informed as you go through the next steps.

[DiveGoddess]

sending you positivity and prayers! Hoping a solution comes soon 😊

[Bikecrazy]

Seems there is a new challenge around every corner. Best of luck to you on this journey. Please keep us posted. Our prayers and thoughts are with you.

[Cja1956]

It’s such a tough decision. It was hard enough, I’m sure makes the decision in the first place and then to have this bump in the road, is awful. I’m so sorry you’re going through this. Let us know what you decide.

[Bluetop]

Oh goodness, what a difficult decision. I wish you all the best. do let us know how you get on. All the best.

[S031251]

whatever you decide I wish you all the best

[Aquinas]

Praying for you with your difficult situation. God Bless you.

[Bullace]

How difficult for you and all the best with whatever decision seems the best. Hilary

[CanadaG]

i'm sorry to hear the news on the previous donor. I was hoping that they would change their mind. Please keep us posted on your decision and I wish you all the best!

[hybiscus]

Wishing you all the best in whatever decision you make. It’s not always easy to live with MPN, so sorry you’re facing such difficult decision.

Hope you’ll find a solution. All the best ❤️