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Female WD Patients

mgraper1
  • By mgraper1
  • Posted August 21, 2007 at 3:45 pm · 11 replies
  • In Pregnancy
  • Shared with the public
0 Recommendations

As a female WD patient, if you have had successful pregnancies and subsequent births, please post to offer encouragement to those female WD patients who are wondering if it can happen for them.

Explore topics in this discussion:

Surgery Zinc acetate Wilson disease Miscarriage Pregnancy Cirrhosis Edema Infertility Progesterone High risk pregnancy Liver transplant Penicillamine

11 replies

mamaof2

I specialize in birth and I would be more than happy to help point women in a direction for info regarding their course of treatment and pregnancy. : )

msulawgirl25

I am a 29year old WD patient. I suffered one miscarriage and had one successful pregnancy before it was discovered that I had WD. When I was 22 (2000), it was discovered that I had WD after I became very ill and was placed on the liver transplant list. I was hospitalized at U of M for several months and ended up in a clinical study that I credit with saving my life.

After being released from U of M, I was devastated when one of my liver doctors told me that with the damage I had incurred to my liver I would not be able to have any more children. A couple months later, Dr. Askari at U of M told me that he felt my health had improved drastically and that I may be able to have more children.

In January of 2003, I was blessed with the birth of a healthy boy, only 2 years after being released from U of M hospital. In February of 2005, I was again blessed with another healthy child: a beautiful girl.

With the exception of terrible morning sickness (I had to take anti-nausea medicine every day) and a low platelet count, my pregnancies went relatively smooth. I was able to work and continue going to college while pregnant.

I encourage every WD patient to not give up hope and be positive about becoming pregnant and having children.

-Melissa-

Hi there,

It is so nice seeing someone post about having successful pregnancies. My husband and I started trying to have a baby when we got married in Sept 2006, but then I became ill and ended up being diagnosed at the Univ of MI hospital in January 2007...so trying to have a baby was put on hold. So many of my doctors here in Minnesota (where I live) try to tell me that I can't have kids because of the WD. However, Dr. Brewer and Dr. Askari (at U of MI) have said that I will eventually be able to have a baby. They just wanted me to hold off until I was off the chelation medication (which was in July)...unfortunately I haven't gotten pregnant yet. Not really trying but not really avoiding either. My cycles had basically stopped a couple years before being diagnosed and have since sort of returned (well, two months in a row anways...and not progesterone induced!!) I see that as maybe my body is begining to normalize, since Dr. Brewer had said it typically takes 6-12 months on medication for cycles to return, once the copper is coming out.

Anyways, it was nice hearing about your success with being able to have kids. I had been very scared about trying to have a child after being diagnosed because I did some research and I found that women tend to have multiple miscarriages with WD.

Hopefully I'll find out in a couple weeks if my cycle is starting to come back (for #3 in a row!!) or maybe we'll be expecting a little miracle of our own!!

Melissa

Bronwyn

Hi there....

I'm 29 yrs. old with a 6 year-old daughter. I was diagnosed in April of this year....but interestingly enough now I've been able to attribute my edema and severe hemorraging due to the WD, I lost almost 2/3 of my blood.... I didn't have my menstrual cycle until she was just past 3 yrs old.....and now 6 yrs. later, and after a half year on TM and Zinc Acetate I'm getting regular again.

Bronwyn

Brandy4

HI

I was diagnosed at 15 with neurological WD. I had a very hard time getting pregnant. The doctors did not attribute that to the WD. I always had my period. We were diagnosed with unexplained infertility.

I had a baby girl with the help of IUI, some meds and acupucture. My little girl will be 3 in Feb. I had a mostly uneventful pregancy , I did have a lot of morning sickness and threw up for 4 months straight. I was followed very closely because i was over 35 and had WD. We tried for over 11 yrs before having our baby., I would love to have another but my hubby says he is done. I am now 40.

I had a misscarriage yrs before the birth of my little girl. I was undergoing fertilty treatments at that time. This was not attributed to my WD.

Our little girl was born with a complex heart defect and had open heart surgery at 2 days old in Boston. She will need more surgery as she grows. She is doing well now . She has not yet been tested for WD.

Valerie
Massachusetts

msulawgirl25

Good luck!
I, too, did not have a normal cycle for a full year after I initially became ill. Then we waited about another 6 months before I tried to become pregnant. Try not to get discouraged!

Gina001

I need advice. I am 29 with WD. Diagnosed nov. 2007 and started trienetine in December. My copper urine started at 1400 and now (April 5, 2008) I am at a 200. My doctors said transplant was inevitable because of how bad my cirrhosis is. Now my meld is down to 12 so they are not following through with this living donor option we were pursuing. At a meld of 14 when I started they were okaying surgery with a living donor. I was kind of looking forward to just having the transplant so I could finaly try to get pregnant.
Now my doc says that unless I have a transplant I can't get pregnant because of the Trienetine. I asked about switching to zinc once my copper levels were normal. And he said I couldn't take zinc alone, I would have to continue with the trientine. At that point I stopped hearing him and went into a fog of shock and dispare so I don't really know his reasoning behind this.
It has now been about 4 months, and I am still not having periods. So my liver doc said maybe I can't have babies anyway, but he is not a fertility specialist so he is hesitant about giving me info in regards to such issues.
Do you know what I can do/expect at this point. I am devistated. Should I get a second opinion on meds? Could I carry a baby with all this cirrhosis I have? Should I see my Ob/Gyn (who is VERY good and treats only complicated fertility and menstral issues) about this? He isn't a specialist in Wilson's disease or liver disease by any means. My heart is broken. My husband's heart is broken. I don't know what to do.
-Gina

mgraper1

Gina
Your Dr. SHOULD be able to adequately advise you as to how pregnancy might affect your liver issues. However, the thought that you could not remain on trientine during pregnancy is wrong. The recommendations from the docs in the know are as follows:
Pregnancy…
All women with WD who become pregnant must remain on their copper reduction therapy throughout their entire pregnancy. If you discontinue your WD treatment while you are pregnant, you risk a decline in your health and liver failure may occur. Ask your obstetrician to consult with your hepatologist concerning any adjustments in your dosages. Current recommendations indicate that if you are on zinc salts therapy no adjustment is necessary. For the chelating agents, d-penicillamine and trientine, a 25% – 50% dosage reduction is suggested. As always, continue regular monitoring to ensure adequate copper balance.
This appears in the new WDA patient publication, "A Patient Handbook" soon to be in print, and was approved by our Medical Advisory Committee.
If you think you might want to consult with another Dr., let me know.

Mary

Gina001

Mary,
Thank you so much for your response. I am going to look into this a little more and make an appointment with my OB/GYN to get his take on things. And I am glad to hear about that publication coming out soon. Who do you think might be a good Dr. for me to consider consulting with on this? I really like my doc, but I am starting to think it is time for a second opinion. Thanks so much for your help. It gives me hope.
-Gina

mamaof2

Everyone needs to understand that most Doc's that are in a specialty, are in a specailty. Example, OB's are high risk pregnancy docs, they don't specailize in anything with the baby, that's the pediatrician's specailty, GI's are GI's and don't remember much from their maternal/fetal health rotation in med school. Their rotation of 8 weeks in birth is not enough to take their word for it. Trust me I take care of these people all the time during pregnancy.

A true high risk OB/GYN is called a perinatologist. That is a doc who's specialty is the baby and mother during pregnancy. They are the true high risk OB's. Any woman carring or thinking of carring a baby should consult and/or see one. There are lots of great options out there for women with or are carriers of Wilson's.

Any issues that revolve around reproduction and Wilson's should be seen by a HIGHLY qualified OB/GYN, in a large hospital. Most suburban community hospital OB/GYN's (even high risk docs in these settings) have never dealt with a (let alone have heard or seen an actual person with Wilson's). I live in the greater Boston area which is well known for all the medical research that is done here, I also work for a few of the large hosptials and they all ask me if they can examine my son because they have never seen anyone with Wilson's, they have only read about it in books.

So, be cautious when finding an OB/GYN, ask them if they have ever treated anyone with Wilson's before, what was their expirence, and would they be willing to work in conjuction with your other health care providers. Lots of docs have an ego and feel like they know everything. A REALLY awesome doc will be willing to work as part of a team and will admit that they don't know everything. : ) Sorry just my two cents.

junebug23

I waited until I was off the Trientine to try to get pregnant. Even though you are supposed to reduce the dosage, it can still be tetrogenic and I didn't want to risk it. Now I am on zinc maintenance (and any good WD specialist will put you on that if your stats are good). It is safe for the baby. I have a regular OBGYN and a Perinatologist who are both consulting with the WD specialist.
I HAVE HAD COUNTLESS DOCS WHO ARE CLUELESS ABOUT WD AND WON'T ADMIT IT.
Please be careful. I pray that you will eventually have a healthy baby.

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