scleroderma, egg harvesting, surrogacy(?) and more

[Nw6London]

Appreciate this could be a bit sensitive, so a warning in advance.

As a relatively young person who was been recently diagnosed 2 years(?), and was completely shocked by the disease, I do generally feel like my life has been taken away from me. I know it’s irrational, but I can’t help feeling upset about the unknown.

I’m currently taking Mycophenalate, which is incompatible with pregnancy and breastfeeding. With hindsight, I probably could have done egg harvesting before starting the medication…

Raynauds has meant that blood and oxygen flow to the placenta have severely restricted, so couldn’t carry. Now, exploring (with Denton), whether it’s possible to manage egg harvesting and potentially the mind field of finding a surrogate who can help us to expand our family.

Has anyone been through a similar process? Or are willing to share their experience? It’s such a weird feeling… I’m 40 and feeling like I don’t have much time to explore this option.

[Clangerscat]

I’m sorry you haven’t any replies. I guess it’s because you are in a rather unique position. I just wanted to wish all the best, I think it’s great that you have professor Denton helping you and hope that all goes well for you.

[Nw6London in reply to Clangerscat]

Thank you Clangerscat. I appreciate it. This community is really my go to on things that could seem irrational and where my emotions and feelings are understood best… There’s a lot of compassion here which I’m really grateful for. thanks for reaching out again.

[Redoralive]

I'm 30 and i was diagnosed at 20. My kidneys were immediately affected and ive had to have one transplant already and im waiting for another. I've got mild lung involvement and I've had 2 cardiac arrests.

I am getting married later this year and we plan to have kids - we'll also be looking into surrogacy. I haven't even considered natural birth to be an option given everything wrong with my body. I still have regular periods though so im hopeful that egg harvesting would be no more complicated than it would in any other woman.

Im sorry i don't have any advice or experience to share, but wanted you to know you're not in this alone and if ypu do find out anything I'd really appreciate it if you could share xx

[Nw6London in reply to Redoralive]

Thank you Redoralive! Congratulations on your union. I’m still investigating… scouring Dr Google but it’s so hard. I hear you re carrying. It’s not even an option. lol I must say, a random lady I met in the waiting area of clinic 7 really gave me hope as she was diagnosed and also managed to start a family via a surrogate. I’m happy to keep you in mind if I find any gems. My next appointment with Denton is in July. Fingers crossed we can come to some kind of consensus.

[luna_lovegood]

Hello there! Are you in Mycophenolate? I know it has bad effects with pregnancy. May I know what sort of medicine they give you if you plan to have kids? I am 34 and planning to have kids soon. Please let me know.

[Nw6London in reply to luna_lovegood]

Hi there, Mycophenalate is not compatible with pregnancy or beast feeding. My appointment is not until July, so will let you know. Be warned though that we’ve been having this conversation with Denton for over 2 years now and he’s advised against pregnancy until he sees how the disease has settled down and you’re no longer in the active stage where the body can do most damage. It will be a thoroughly managed pregnancy, from pre-conception all the way to birth.

Prior to mycophenalate, I was on hydroxycloroquine, which is compatible with breast feeding but I don’t know about pregnancy. You’ll have to take the advice and see what they say.

Denton says “we want you to be alive to take care of your family”. And he’s right.