MDS & Pregnant Update

Please post here your experiences of MDS as a patient, carer, family or friend

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MDS & Pregnant Update

Post by Milly » 14 Mar 2015 21:46

Hi Everyone

First may I convey my sincere gratitude to all those who have shown interest in my condition, especially those who contacted Sophie or replied.

After considering all the information my consultant has been able to find besides researching as much as I can myself, I have come to the decision to go ahead with my pregnancy providing my condition doesn't deteriorate. I have no illusion that if my condition does deteriorate and pose a serious risk to my own life then my consultant will have no option but to terminate my pregnancy at whatever stage so she can treat me. I have also taken into consideration the distress I was experiencing trying to come to terms with a termination and my mental well being, and believe that for me personally I have come to the right decision. If nature or my condition decides that the baby isn't meant to be I can put my hand on my heart and accept that it is for the best, however I feel that if I did terminate it would send me into a serious downward spiral and find it difficult to cope with the treatment. Since making my decision I have become more settled and relaxed with a positive attitude again with the understanding that I am in for a very big fight and must look after myself.

Obviously I have consulted my family and my partner as well as my consultant who are all supportive and understand why I've made this decision, to the point my partner won't let me go to work (luckily we run our own coach company) in case of any of the drivers bringing in an infection unwittingly. So here goes living in a protective bubble till baby is born and I'm treated, I don't blame him I know it's him doing his part and showing his feelings.....I will escape on shopping trips I'm sure ;)

I managed to find a clinic with expertise in MDS and pregnancy in America and my consultant is contacting them this week to see what their advice and guidance may be. And I have my first scan this week which is going to be very surreal, I'm glad I made the decision before this point or it will have been even more difficult to make a decision, my consultant is waiting on the results to find out exactly how far gone I am as I think I could be a week out on my dates, I'm either 13 or 14 weeks this week, and she wants to start planning treatments and so on.

So far my cells are holding steady which my consultant is happy about even though my blood count has dropped to 7.9 which considering five weeks ago it was 5.1 she is satisfied with. She has booked me in for a transfusion on Monday and for the time being will support me with weekly blood tests, transfusions when needed and if my white cells show a change another bone marrow sample to keep a careful watch on what's happening, the consultant is now also checking what treatment options are available without harming the baby or causing me further distress.

I will try and give you all updates on a fortnightly basis so I don't bore you, here's looking forward to a positive bright future and the Guinness my partner makes me drink every night as he believes it will help with my anemia.

Thank you all again.
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Re: MDS & Pregnant Update

Post by chris » 14 Mar 2015 22:55

Dear Milly

I am so pleased that you have been able to come to a decision you are happy about and are going ahead with your much-wanted pregnancy. Your first ultrasound scan is an emotional time - even without all the concerns and questions you must still have - so I hope it is exciting when you see your baby on the screen. It sounds as though your partner is taking extra good care of you and with good reason as your immune system is naturally lower in pregnancy so avoiding possible sources of infections is vital when you have low white cells because of the MDS. My daughter is 26 weeks pregnant but has had 4 coughs/chest infections/colds since Christmas and she is normally very healthy. You need to protect yourself even more with your MDS. This means asking anybody with obvious infections to stay away from you until they are completely better. It's also a good idea to avoid crowded public places like cinemas, public transport and busy shops and shopping malls (sorry!). Anywhere where you might touch surfaces like lift buttons, cafes, toilet doors,debit/credit card PIN buttons etc is a risk and I make good use of gloves and hand gel when I am out and about. Also, some foods need to be avoided - interestingly a lot of foods which pregnant women are advised to avoid like soft cheeses, cheeses made from unpasteurised milk, raw foods like seafood, sushi etc. There is a diet sheet for neutropenic people on this site which you can download or Sophie could send you one.

The sort of anaemia caused by MDS cannot be helped by having more iron in the diet so, sadly, iron-rich foods/supplements or Guinness cannot help (!) and it might be worth re-checking with your consultant about the effects of alcohol on platelets- especially as yours are so low. When I asked my consultant about this, she took the line that moderate drinking would probably not have any significant effect (I only have about 2 glasses of wine a week anyway!) but my platelets are a bit higher than yours (75) and I am not pregnant!

Basically, your body needs all the help it can get to nurture your pregnancy so make sure that you rest, eat sensibly and healthily, take some light exercise like walks in the fresh air - especially now the Spring is coming and some better weather we hope!

Do let us all know how you are progressing and our best wishes and thoughts are with you.

Take care

Chris. (F) Age 71(2021). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-monthly.SE Essex
Posts: 75
Joined: 04 Mar 2013 13:01
Location: South East England

Re: MDS & Pregnant Update

Post by MollyP » 16 Mar 2015 11:43

Dear Milly
I am glad you have a plan sorted in your head and that you are feeling more settled even though you may find difficulties ahead.
I am encouraged that you have found the American clinic too who at least can shine further light on what you have to go through.
Sending you big hugs and best wishes for the forthcoming months.
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
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