Pregnant...40...and...Wegner's...good times!

[Mel4]

When I read up on the disease, it seems I have had symptoms for years. A "broken" foot, chronic ear infections and ear tubes at 30, random skin things the dermatologist called binary contusions...I have been to the chiropractor because I couldn't move my arm, hip, leg, blah....

So in October I was really sick and was diagnosed with pneumonia. In November...despite my husband's vasectomy...I found myself in a family way! I had just cancelled my maternity insurance, my husband lost his job in December...in February I started coughing up blood and just thought it was part of being pregnant. In April I went back to my primary care and she ordered an x-ray and still thought it was pneumonia, but suggested I see a pulmonary. He was very concerned and started asking about joint pain..which I just thought was arthritis or from being 40 and pregnant! He texted me over Memorial Day weekend and asked me to send him a picture of what I had been coughing up. I did and he responded to get the the ER immediately. I blew it off because it had been happening for months...what could be so wrong?! And it was actually looking better from the meds he put me on! But I ended up going and...

I ended up in the hospital for 4 days with all the blood tests, bronchoscope, ultrasounds, echo cardiograms, all while baby is being monitored like crazy! I left there thinking I had Rheumatoid arthritis and lung. After several doctors appointments and tests they found the Wegener's, which was just officially diagnosed 2 weeks ago.

I have 3 kids that are 8, 4, and 2. I go to the doctor like it's a full time job...like I'm sure we all do! I'm a teacher and so glad it's summer because I don't know how I could keep up!! Now I have special Maternal Fetal Medicine people to go see too.

I was in so much pain before, I'm on 40 mgs of prednisone now and it is really helping. My joint pain is almost gone, so is the coughing up blood. I'm very anxious about the future as all are waiting the delivery to see how my levels look and what path to take from there. Infusions, lung biopsy, different meds...no one wants to commit until the delivery.

So here I am. My husband got a good job with good insurance! I did just get a letter asking about a pre-existing condition but I am not going to worry about that now!!! My kids are doing good, the baby is doing good...I'm trying very hard to stay focused on the positive and not sit around and feel sorry myself...some days are better than others as I'm sure we all know!

I was so happy to find this site to hear other stories and get support. I am feeling very alone and it's nice to know other people are in a similar situation.

Thank you!

[Geoff]

Wow Mel! What a story, thank you for sharing with us. Wishing you all the very best with your journey. This site is like having your own special doctor/ carer/ team support. Feel free to vent, ask questions and just get it out there!
Keep us up to date with your ongoing pregnancy.

[windchime]

Hi Mel, welcome to our world. Sorry you have to be here, but since you do it's THE best place to be. Is your baby due this month? Good luck with the delivery. Glad to know the pred is getting some things settled down. Good luck to you and keep us posted.

[annekat]

Welcome from me, too, Mel! I like your positive spirit about all the changes going on in your life. Of course, I wish you hadn't gotten WG but since you did, I'm glad you found us, as this is the best place to be to feel a lot less alone with the disease and get lots of support and information. I look forward to hearing about the baby's arrival and what course of meds they put you on after that. I'm glad the prednisone is making a difference in how you feel.

[chris.wg]

Hi mel. I consider myself positive and don't complain much at all. But after reading what you are going thru <as a male I can't really imagine pregnancy much less with WG> and how positive you are I look like a big baby ;) I'm glad you found the site. This is a wonderful community to be a part of.

[Mel4]

Thank you! I am so glad to share and read about others...thanks for your kind words:)

[Mel4]

Hi Mel, welcome to our world. Sorry you have to be here, but since you do it's THE best place to be. Is your baby due this month? Good luck with the delivery. Glad to know the pred is getting some things settled down. Good luck to you and keep us posted.

Thank you! I am due August 4th. All docs have told me to stay open to the idea of going early if things take a turn...I will update! I have blood work this week so I'm always a little anxious....

[Mel4]

Hi mel. I consider myself positive and don't complain much at all. But after reading what you are going thru <as a male I can't really imagine pregnancy much less with WG> and how positive you are I look like a big baby ;) I'm glad you found the site. This is a wonderful community to be a part of.


Thank you! I think I might have made myself sound more positive than I am...fake it till you make it?!?!

[Mel4]

Welcome from me, too, Mel! I like your positive spirit about all the changes going on in your life. Of course, I wish you hadn't gotten WG but since you did, I'm glad you found us, as this is the best place to be to feel a lot less alone with the disease and get lots of support and information. I look forward to hearing about the baby's arrival and what course of meds they put you on after that. I'm glad the prednisone is making a difference in how you feel.


Thank you! It's amazing the difference the meds have made! This community is so welcoming!

[Alysia]

Hi Mel,
thanks for sharing your story. you sounds like a strong women with great attitude. I hope that the delivery will be easy and safe and that you can get the treatment and get fast into remission. I also hope that in all that turmoil you will still have your peaceful time to enjoy your baby.
welcome to our family. prayers and hugs heading to you from Israel :hug1:
please update us.

[chris.wg]

Thank you! I think I might have made myself sound more positive than I am...fake it till you make it?!?! If you can fake it you can and will make it mel.

[windchime]

I think this was mentioned on another thread you started, but one our members wrote a book about his wife's battle with wegs. The book is available on Amazon for an ereader and is an awesome book. It's titled "Alicia my battle with Wegener's Disease". The chapter on pregnancy was shared here.

http://www.wegeners-granulomatosis.com/forum/weggie-s-stories/3983-alicia-my-battle-wegener-s.html

[LisaT]

Thank you! I am due August 4th. All docs have told me to stay open to the idea of going early if things take a turn...I will update! I have blood work this week so I'm always a little anxious....

Good luck! I'm glad you're eight months in because even if you delivered now, baby has fully developed lungs and is equipped to be out in the world... Although a 'fourth trimester' (close cuddles, baby wearing, low stimulation... I'm sure you know the drill... would probably help too). Can't wait to hear who joins your family! And I hope you get a good treatment plan and relief from / reversal of symptoms soon afterwards.

[Mel4]

Hi Mel,
thanks for sharing your story. you sounds like a strong women with great attitude. I hope that the delivery will be easy and safe and that you can get the treatment and get fast into remission. I also hope that in all that turmoil you will still have your peaceful time to enjoy your baby.
welcome to our family. prayers and hugs heading to you from Israel :hug1:
please update us.

Thank you! It's funny I think about leaving my little baby with someone while I go for treatment...I am hoping it's not too insane that I will be able to enjoy. It's such a special time! Thanks:)

[Mel4]

Good luck! I'm glad you're eight months in because even if you delivered now, baby has fully developed lungs and is equipped to be out in the world... Although a 'fourth trimester' (close cuddles, baby wearing, low stimulation... I'm sure you know the drill... would probably help too). Can't wait to hear who joins your family! And I hope you get a good treatment plan and relief from / reversal of symptoms soon afterwards.

Thank you:) I'm really hoping that what you say happens!!!

[Mel4]

If you can fake it you can and will make it mel.


:thumbsup:

[mishb]

Hi Mel,
Welcome and Congratulations.

Do they think that the pregnancy brought the WG symptoms to a head?
I have heard of some ladies say that most of their symptoms disappeared whilst they were pregnant and/or breast feeding.
I think Alysia was one of these.
Maybe once you have had bubs (and we all are eager to hear), things will settle down again - I sure hope so anyway.

Take care and .......

[keegan55]

Welcome to a great site that will really help and support you. I am do sorry you are pregnant and have GPA also. You are going through a lot . It took 9 months to get mine diagnosed. Lots of tests and questions etc etc really a pain. I hooe all goes well with you and the baby. This is a great place to rant and get help also. Great bunch of people. Again welcome

[drz]

Thank you! It's funny I think about leaving my little baby with someone while I go for treatment...I am hoping it's not too insane that I will be able to enjoy. It's such a special time! Thanks:)

Your treatments will probably be done on an out patient basis if things are going well for you and should not take you away very long. You will probably need more help at home afterward than you did with your previous deliveries. The good news is you have been finally diagnosed correctly so you can get correct treatment and the pregnancy is almost over too. Also you don't have to worry much about the pregnant look and the weight gain from the "pregnantzone" meds. Best wishes for quick recovery and good response from your treatment.

[lag713]

Welcome Mel! I'm sure you'll be busy with the new baby and getting treatment but I would love to see updates on this process. You may know that Wegener's in the child bearing years and Wegener's and pregnancy are uncommon. Any information about your experience would be interesting to hear. I'm 27 and I want to have kids but I'm not sure about timing/treatment, etc. I'm also recently diagnosed ~ 1/2014.

Wishing you and yours all the best! :hug3:

[Mel4]

Thank you! Yes, the doctors have made sure I know that my pregnancy and Wegener's is not common. Of all the doctors I see I rank them from scariest to least scariest...and some of them make a huge deal and the others think everything is just fine! The prednizone has really helped everything stay under control. I have to go for weekly monitoring of the baby now...which is ok. They are checking that he is still growing properly with all the meds. I would say the worst part is my breathing...it is literally embarrassing how hard it is for me to walk/carry/stairs/anything! I remember being out of breath before...but this is a whole new level. I think I have had this for awhile, and I think it was escalated in my previous pregnancies. I remember the sciatica, and joint pain and just thought it was pregnancy. But now that I am 8 months with meds and feel so much better, I think the pain before was from this! My doctors are very hopeful that I will go into remission after treatment...there's a lot of "wait and see" that is so hard! Yes, I will keep updating:). I'm waiting to hear now from my blood work from last week...he was thinking he might lower my prednizone if I looked better...we'll see!

[Mel4]

Thank you! I just picture this little 2 week old baby sitting with someone while I go for infusions and it makes me sad! There has also been talk of a lung biopsy and days in the hospital...eek! I know it could be so much worse so I need to just be thankful for the diagnosis and that treatment will be coming soon...Thanks for your kind words:)

[Mel4]

Welcome to a great site that will really help and support you. I am do sorry you are pregnant and have GPA also. You are going through a lot . It took 9 months to get mine diagnosed. Lots of tests and questions etc etc really a pain. I hooe all goes well with you and the baby. This is a great place to rant and get help also. Great bunch of people. Again welcome


Thank you:) It's crazy that this is so hard to diagnose! Looking back I have to tell myself not to get mad that I was seeking treatment for things and not one of the doctors even mentioned or thought of anything vasculitus related. Thank you:)

[chris.wg]

I don't know how good the hospital or doctors you are seeing are so this information is to inform you not to scare you. If the choose to do a lung biopsy find all the information out you can before doing so. The hospital I was first diagnosed in said they were going to do one on me. I didn't like the idea but feeling like I was dieing, and for all intensive purposes without treatment was, I agreed to it. They said it would involve a small cut just send the tools in and get the sample. NEXT day the doc who was going to be doing the surgery came in and said. I know what they told you but... the material in your lungs is going to be to hard and the knife to small to do that. We are going to have to crack open your chest cavity. I flipped out on him which was pretty impressive for the state I was in. Without going into detail he was told if there is absolutely no other option and this is the only way for me to get better I will do it. BUT there better be another way got it. Long story short we settled on a needle biopsy where you sit in the cat scanner and they apply a local and send a needle in to get a sample. He told me it may not yield the needed results but in the end did. I guess what I am saying is get all the needed info before agreeing to it. Also I am a bit confused as to why they want the biopsy if you are already diagnosed? Are they worried drugs aren't helping or looking for another possible cause of shortness of breath ??

[Mel4]

I don't know how good the hospital or doctors you are seeing are so this information is to inform you not to scare you. If the choose to do a lung biopsy find all the information out you can before doing so. The hospital I was first diagnosed in said they were going to do one on me. I didn't like the idea but feeling like I was dieing, and for all intensive purposes without treatment was, I agreed to it. They said it would involve a small cut just send the tools in and get the sample. NEXT day the doc who was going to be doing the surgery came in and said. I know what they told you but... the material in your lungs is going to be to hard and the knife to small to do that. We are going to have to crack open your chest cavity. I flipped out on him which was pretty impressive for the state I was in. Without going into detail he was told if there is absolutely no other option and this is the only way for me to get better I will do it. BUT there better be another way got it. Long story short we settled on a needle biopsy where you sit in the cat scanner and they apply a local and send a needle in to get a sample. He told me it may not yield the needed results but in the end did. I guess what I am saying is get all the needed info before agreeing to it. Also I am a bit confused as to why they want the biopsy if you are already diagnosed? Are they worried drugs aren't helping or looking for another possible cause of shortness of breath ??


It is so crazy how many different opinions and ideas there are out there. I am very interested in how many people were actually biopsied to get diagnosed. Two doctors say that because of the anemia, coughing up blood, c-anca levels, some other level, rash, that it is wegener's and they would treat it that way. Other doctor says that the only true way to diagnose is through biopsy...which is what I have read...and that if we are going to treat me for life with something, then we should make sure. It is confusing.
Sorry to hear about your hospital experience, that had to have been awful.

[lag713]

I may be in the minority here but I did not have a biopsy to receive a diagnosis. It was caught early for me with only sinus involvement. My rheumy and ENT agree that I have Wegener's because of blood tests (multiple - not just once) and symptoms. They don't think it is necessary for me to have a biopsy and believe it would likely be a false negative.

However, the only accurate way to get a diagnosis is a positive biopsy. If you wait until you get a positive biopsy then it could let the disease do more irreversible damage and there is no reason to have that risk.

[Jayne 14]

Welcome to the family
This is a brilliant place to vent for advice & find support
And congrats on your baby
Your attitude sounds perfect
GOOD TIMES
🎉🎉🎉🎉🎉
Good luck for quick remission


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[Mel4]

Thank you;)