Mylefibrosis and pregnancy

[Leighcox85]

I have primary mylefibrosis jak2 positive I have been poorly since I was 24 and iam now 35 but my condition at present is not great and I am awaiting stem cell treatment I have an implant to prevent pregnancy and I take jafiki 20 twice a day need blood every few weeks and my platelets are really low I recently had bloods before my telephone appointment with professor Harrison and iam pregnant this is something I did not expect and everyone’s opinion is immediately abortion but I don’t know what I want and I feel really sad to even have to think that way does anyone have any advice or know anyone that had a baby despite mf I already have 2 boys so I need take them into consideration but I feel I need more info before I speak to my team and make a choice that changes every

[Bakerloo73]

Hi there. I really feel for you and wish there was an easy answer. I had 3 pregnancies with MPN, I didn’t know at the time it was PMF as well as ET but I do have epilepsy so was under the care of Prof Harrison too. Except she wasn’t a prof then! I was similar age to you but medically a little different. One of our pregnancies was complicated though and abortion was mentioned to us. It is so hard because it is not something we would ever consider and in fact we decided against it even though we thought our baby may not live long. But it depends what the risk is to you as well. One of the things that I initially struggled with massively when diagnosed was the thought of leaving my children without a mother and the impact of them living with it if you deteriorate or die due to carrying is perhaps a factor for you. Listen to the professionals, listen to your family, listen to your partner, listen to your heart. Even talk to your kids if old enough and you think that helpful. Tough decision but message me if you want to stay in touch. X

[Leighcox85 in reply to Bakerloo73]

Thank you so much for your reply my greatest fear is leaving my husband a single father with 3 children one a newborn my boys both have autism and it can be really difficult at times my family tend to try wrap me in cotton wool and they immediately said abortion but it’s not in my heart to do that I feel I have try but then a part of me feels selfish I think I will contact Claire my nurse and talk things threw see how my team feel about this I was at Birmingham till last year when I asked to be referred to Prof Harrison as she is the best iam told Birmingham had said that there’s no more they could do and I had about 2 years but I’ve since been told they shouldn’t of said that I think your incredibly inspirational to go through all you have and I appreciate you helping me so much

[IrishHiker in reply to Leighcox85]

I have worked both as an oncology nurse and a Hospice nurse. One thing I can say is many a patient I cared for has been told they have a prognosis of 6 months or less, a year or less, two years, etc. and they have gone on to live far beyond their predicted prognosis. The will to live and a positive attitude have a great deal of influence on one's prognosis. Just focus on one day at a time and be grateful for every morning that you are breathing <3

[Bakerloo73 in reply to Leighcox85]

One of my boys has autism so I can understand some of your struggles! It is so tough and you just want to do the best for you and your family but I had absolutely the best care in London. Even though I had to travel from Dorset it was worth it and I had my twins in St Thomas’ hospital thankfully. If you see the high risk docs there, they are also amazing. All the best. Stay in touch. X

[Chaz1]

I can't offer any advise from experience but I think for starters it's important to know what the medical professionals think in regards to both your health with continuing the pregnancy and that of the child. I'd assume it will put Stem Cell Transplant on the back foot until after the pregnancy.

No one can tell you what to do but if it is likely to have a negative impact on your health & quality of life whilst pregnant then your family maybe right. Your fear of leaving your husband a single parent is completely understandable but also the factor that if the pregnancy puts that into reality and this child survives would it always cast a cloud on the families relationship with the child. It wouldn't be the child's fault but feelings can be expressed in many ways.

My hubby has ET/PV, we have one child, I nearly died immediately following giving birth & always said I'd never do it again as there is too many complications. I always said if I did get pregnant I'd terminate (hubby didn't necessarily agree that point but happy not to plan another pregnancy) . After 10 years I was finally allowed to book into be sterilised by my Dr & had actually done so just before we walked in the room & received hubby's diagnosis. It went across my mind to cancel my OP in case I could create a child to help hubby. It was the immediate thought, I'd do it to save him. I have been sterilised but it's the only time I ever doubted the decision on not having more children. I would terminate if I got pregnant now, (always a small possibility) because my life is important to those around me, yes I'd possibly bring another amazing child into the world but if I wasn't here would my son & hubby love that child that I'd chosen to have when I knew it could kill me?! There's also the possibility both of us could die, or I'd survive & the child would die. Would that be harder to deal with than living with the decision to terminate.

Ultimately it's your decision & it's going to be challenging whichever way you decide. Firstly talk with Prof Harrison, I'm sure she will be full of support for whichever decision you make.

Sending love & prayers, we are all here to support you whatever happens xxxx

[Ebot]

Hi there

I can’t offer any insights into the impossible dilemma in which you find yourself save to say that I really value Prof Harrison’s advice. It’s not her style to dictate a course of action to her patients and I’m sure she (and her CNSs) will give you the time to talk this through and with their support come to your own conclusion. I hope that you can find a place of peace and decide on a path that you have faith in. Wishing you strength.

[Wyebird in reply to Ebot]

This is a really lovely reply.

[Mazcd Partner MPNVoice]

Dear Leigh, I really do feel for you being in this position, I think you are doing the right thing by deciding to talk to Claire about this, and of course Prof Harrison, you have a very tough decision to make and I am sending you my best wishes, Maz x

[Wyebird]

Oh my goodness what a heartache you have. With MF Cell transplant and pregnancy.

You have a huge dilemma, You have t bc e future of your boys to consider too.

I don’t know a lot but I imagine you have to be on tip top condition for the transplant.

Ultimately you are with a top Prof-

I’m sure you and your family will go through all of the options.

What ever you decide it will be a difficult one.

May you get all the support you need.

Xxxx

[JediReject]

Hi Leigh, , , firstly I'm sorry you have been unfortunate to get MF at your young age , I thought it unfair when I got PMF age 45 and was told it's predominantly an older persons disease.

I don't know if what I tell you will be helpful or make your decision harder. But when I was in Manchester Royal for my life saving Stem Cell Transplant (5 years ago) there was a young lady in at same time who needed an SCT because during her blood tests for her pregnancy it was discovered she had a form of Leukemia requiring urgent treatment. Possibly Acute Mylogenous Leukemia.

Not only was she pregnant it was twins. They hadn't done a transplant of this nature before. She elected to go ahead with the view the twins would have to take their chances as she wanted to be around for her 5 year old son. Im unsure how far on her pregnancy was.

She made a full recovery and I've seen pictures of her twins on Facebook at their 3rd and 4th birthdays.

I wish you my very best as you go forward but as your unborn baby is unplanned maybe just maybe it's meant to be but obviously the final decision rests with you and your husband taking into account all the professional advice as to what's best for you all.

Regards - Chris

[JediReject in reply to JediReject]

I need to add that the lady underwent chemotherapy treatment to put her in remission until the twins were born and then soon after had her S CT. . . My wife's memory is much better than my addled one. . .

[Leighcox85 in reply to JediReject]

Hiya Chris so glad to hear your doing ok I followed you when I first joined this page and have followed you since your story was incredibly inspirational and when I was refused stem cell I fought it as I knew it could be option and you can get through I was told I was completely infertile so it’s been a massive shock and I can’t help thinking it was meant to be but iam really scared I fought extremely hard to get my transplant and although it terrifies me it also is my only option knowing others have still been able have a healthy baby and stem makes me feel a lot better iam hoping that once I speak to my doctors I will have some kind of clarity iam so glad to hear your doing better and congratulations on becoming a grandad

[hunter5582]

You are in a tough spot and your struggle to decide what to do is understandable. Trying to balance the health implications, impact on your family, and your own feelings about terminating the pregnancy is a tough and painful place to be. All I can add to what others have said is to know that you are not alone with this. Whatever you decide, you will be supported. You will be in thoughts and prayers. Please let us know how things go for you and we will do whatever we can to provide support.

[Scrollernut]

I am so sorry about your dilemma. This is heart breaking. I cannot even begin to understand. I do know that having an abortion is an option but I would strongly, strongly suggest going to a pro-life site and talk to someone. Abortions can cause horrific guilt. You don’t need that on top of everything else. I know sometimes people say have faith and merely use that as a catch all phrase but I do truly believe in the power of an almighty God to take care of those who deligently try to do what is right not what is wanted. My prayers will be with you. But please give this a great deal of thought of the consequences of an abortion. Love

[Leighcox85]

I just wanted to come on and say thank you to everyone your advice and guidance means so much to me I spoke to my team this morning and I have a telephone appointment Monday so we can have a good chat and go through some options in normal circumstances I would never consider abortion my second child was born full term stillborn and it was the worst thing I’ve ever been through so to hurt my baby seems wrong but my family had a really bad reaction especially my husband which I really didn’t expect that and they made me feel that abortion was my only option as anything else would be completely selfish of me my team are really good and I hope that they can help answer a lot for me regarding my health xx

[Cja1956 in reply to Leighcox85]

You really are in a tough position and my heart goes out to you. It’s almost an impossible decision to make, but it seems like you have a great team of experts to help you make the right decision. I can’t imagine what you are going through. We are all here to support you, no matter what.

Sending hugs.

Cindy

[mhos61 in reply to Leighcox85]

Leigh, I am so sorry for what you are going through, it’s beyond words. You have been through so much for your young age.

I’m sure your family’s intent isn’t to make you feel selfish, they obviously love you and don’t want to risk losing you.

It’s good you’re talking to your healthcare team, as you absolutely need professional guidance. Whatever your decision is, it’s going to be a hard choice either way and you’re going to need lots of support. I hope that the discussion with the experts will be able to make that choice a little easier.

We’re all here for you

Mary xx