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lag713
03-22-2014, 10:00 AM
Is pregnancy a realistic prospect or should I let go? :confused1:

I have been ruminating a lot about the prospect of having children biologically. I am open to adopting children but I like the idea of having one child biologically if it does not threaten my health. The research seems to conclude that women with GPA have better outcomes if they have a sustained remission for 6 months or more prior to conception. Many women have a flare during pregnancy or shortly after giving birth. When making decisions about treating a flare during pregnancy the health and wellbeing of the mother as well as the child must be weighed carefully as many treatments are potentially damaging to the fetus but GPA is also life-threatening. There have been many instances of negative outcomes such as premature delivery, therapeutic abortions, and maternal death. The research is almost entirely based on case studies given the rarity of the disease and late onset. I'm afraid of what might happen if I try to have a baby but I can't shake a desire to have a biological child and experience that part of life.

I'm a newly diagnosed Weggie, 26 years old, in fairly good health. My first symptom was joint pain in July 2013, I went on methotrexate in September 2013, and was officially diagnosed in January 2014. My CT scan of my lungs was negative. I never had a biopsy of nose although that is the only place where the disease appears to be active (lungs and kidneys appear to okay for now). I've struggled with joint pain and swelling, fatigue, malaise, headaches, difficulty concentrating, eye pain and tearing, and sinusitis. I think that I am fortunate to be as healthy as I am. I am not in a rush to have children until I get GPA into remission, finish graduate school (I will get my PhD eventually), and secure a good job. I find myself researching 'vasculitis and pregnancy' or 'wegener's and pregnancy' or 'GPA and pregnancy' because I want to know if I need to make peace with the idea of not being able to have a child biologically. (I'm also an incessant planner so the 'see what tomorrow brings' take to life that GPA forces on me is a challenge.)

I have a supportive and caring partner who would like to have a biological child as well (and is also open to adoption) but wants my health and well-being to come first (I know how to pick 'em). Is it almost a certainty that my life expectancy is shortened? Is disability a likely future? Can I age in a healthy way and retain my functioning and independence? (I do research on occupational health, chronic illness, and workability so these issues are not unfamiliar to me. I also need to take better care of myself - get more exercise, eat healthier, sleep more, drink more water, and stress less.)

Is this too risky for me? Is this too risky for my child? Is this just hormones that are crying out that my clock is ticking or do I just want what I perceive that I can't (or may likely not) have?

I've always wanted to adopt one child. I fell in love with the idea after watching Wednesday's Child growing up. I think my ideal has always been to adopt one and have one. I worked with children with autism for a few years during and after college so I know what I would be getting into by having children and then some.

Is there another young female out there? How are you handling family planning?

pberggren1
03-22-2014, 12:54 PM
I think there are quite a few that have had children on here. And even way more on facebook that I have met. Gwen, who used to run this Forum, was diagnosed at 14 and has 3 children with severe disease.

NikkiNicole
03-22-2014, 02:01 PM
I've wondered this myself many times. For now, my MTX keeps me from getting pregnant until at least August 2015. I will be almost 36 yrs old. I'll be considered high risk in normal health, let alone someone who has Wegener's and Hashimoto's and isn't quite at 5 years remission from cancer.
Adoption has always been something we've considered and something we could do prior to coming off MTX. However, some other things come into play.
I was 17 when my mother died from raging pneumonia, and I was 20 when my father died from Alpha-1 antitrypsin deficiency and metastasized lung cancer. Being young and losing my parents devastated me. I had younger brothers who were under 10 when they died. It opened my eyes to a lot of things.
I don't want my children to be put in that position. I've carried that around with me wherever I go. Just recently, in the ER being prepped for emergency surgery for appendicitis, my stepmom came in and I joked that I was upset to have inherited my father's predisposition for being in the ER all the time. She laughed, but it felt true. Weird diseases apparently run in my family.
Genetically, I don't want to run the risk of passing my cancer riddled- weird disease germs onto children ... but, I could adopt and give a lonely child a warm loving family ... until I died.
I don't know. I'm a worrier.
I have seen lots of posts about people who've had children post diagnosis. It can be done!!!

Keep your head up! It can happen.

mishb
03-22-2014, 03:15 PM
There is a girl in our WG Australia Facebook Group who has a beautiful baby boy.
She is about your age lag713.
She hasn't been on here for a while so I will get her to drop by.

All is not lost, and fingers always crossed, but our life expectancy is very good these days with treatment.
All things going well, you should live to a very old age.

Alysia
03-22-2014, 11:05 PM
Hi and welcome.
you can check this group on fb: https://www.facebook.com/groups/103915323070376/
I understand your worries. but I know that there are many mothers who gave birth to healthy babies after being dx.
I think that I was already sick with wg, "smoldering" activitiy of it, when I was pregnant with my little son. while I was pregnant and after delievery, as long as I was breast feeding (14 months !) I felt wonderful. symptoms that I had before: farigue, ears problems, coughing, joint pains, left me at that period and returned only later.
so maybe pregnancy and breast feeding can be even good for you.
if you are planning pregnancy, you better switch mtx to Imuran because mtx is not good to the fetus. you should take folic acid couple of months before. and arrange a lot of support around you.
good luck.

lag713
03-25-2014, 12:41 AM
Thank you all for your warm welcome, words of encouragement, and sharing your knowledge and experience. I really appreciate it.

Phil - Gwen sounds like an impressive and inspiring woman!

Nikki - It is nice to hear from someone who is contemplating pregnancy post diagnosis as well. I'm so sorry to hear about your mother and father. I can't imagine how difficult it was to lose your parents so young. I've also wondered what kind of genes I may pass on to my children or if I would live a long life. I understand your concerns. I know there is no use in worrying but it is easy to do. I think adoption seems like a wonderful option for those who are open to it. Thank you for your encouragement. J

Michelle – Thank you for the optimistic outlook. I’m happy to hear of other Weggies having beautiful babies. I hope we can all live long, healthy, and independent lives in our post-retirement years.

Alysia – I’m so happy to hear of your positive, healthy outcome and healthy babies. I hope I will be as lucky. I will definitely want to be off methotrexate for 3-6 months prior to conception to make sure it’s out of my system. I’ve read that prednisone and azathioprine are also recommended treatment options. And… I just googled Imuran and discovered that it is azathioprine. J Glad to know we’re on the same page!

Also, thank you for sharing the FB group. I am reluctant to join groups on FB given that FB will sell our data and other companies are working on ways to use FB data for marketing and insurance risk purposes. I’m aware of an insurance company actively pursuing ways to take FB information to better predict risk so they can more accurately determine “fair” insurance rates. They explained that they are trying to provide the lowest price to attract consumers but not so low that they could potentially lose money. I don’t mean to be paranoid but the anonymity of this forum was a big draw for me.

lag713
03-25-2014, 12:43 AM
Those random "J"s are supposed to be :rolleyes1:. I'll get the hang of this site eventually...

Alysia
03-25-2014, 02:13 AM
2 articles I saw today, on another froup on fb: https://www.facebook.com/groups/332547823431093/

one article is less nice. but you can also check its refernces to learn more...

http://ard.bmj.com/content/59/10/800.full

Severe relapse of Wegener's granulomatosis during the early postpartum period (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1797990/)

I think that the bottom line is to "come prepared" to pregnancy.
you can also search the forum. I rememmber there is here the husband of a weggie woman who delivered couple of months ago. anyone remmeber his name ?

lag713
03-26-2014, 12:45 AM
Thank you for sharing those articles! I definitely want to be prepared if I plan to become pregnant. It seems like I would need to plan well in advance and work with an OB/GYN that specializes in high risk pregnancies.

I had tried to search the forum before but never had any results because I didn't enter the authentication number to prove I wasn't a robot. Now that I've done it once, it seems like this website lets me make searches without needing to enter it again. I knew there would be discussions about pregnancy here but the search always resulted in "no matches" before.

Alysia
03-30-2014, 12:58 AM
Elsevier (http://www.bprclinrheum.com/article/S1521-6942(13)00009-0/abstract)
Fertility and pregnancy in vasculitis

lag713
04-02-2014, 07:46 AM
Thank you for sharing that article, Alysia! It was an interesting read. I had not come across it before in my searches. I figured it was only related to fertility or the ability to become pregnant but it has a lot of information about health and pregnancy outcomes that are encouraging. :biggrin1:

mama2005
04-16-2014, 01:56 PM
My rheumatologist says I can have another child if I want to we just have to monitor me very closely, Having a OBGYN that will know or lean and work closely with your wegs doctor is a help also.

mishb
04-16-2014, 07:54 PM
My rheumatologist says I can have another child if I want to we just have to monitor me very closely, Having a OBGYN that will know or lean and work closely with your wegs doctor is a help also.

That's awesome news mama. :thumbsup:

You must visit here more often and we can share your journey - once you are pregnant that is.

lag713
04-16-2014, 10:57 PM
My rheumatologist and ENT have both said that it is possible but they recommend I be in remission and consult with them and a high-risk pregnancy OBGYN throughout. It was nice to hear that. :smile1:

Alysia
04-17-2014, 01:13 AM
Fertility and Autoimmune Disease - AutoimmuneMom (http://www.autoimmunemom.com/general-autoimmune/fertility-and-autoimmune-disease.html)
another link I just saw....

lag713
04-17-2014, 01:21 AM
Thanks, Alysia!