Reintroduction

[Maestra]

I came on this site a couple of years ago as I was learning as much as I could about the disease, and learning to live with the new me.

I was diagnosed Dec. 26, 2007. After 6 months of trying to figure out why my kidneys were declining, I was finally able to get into a nephrologist who immediately diagnosed me. It was confirmed the first week of January 2008 through a kidney biopsy. When I first read this site it was calming for me to read what ithers were experiencing. I did not post much, but read a lot.

I have always considered myself lucky because my main involvement was with the kidneys. I have had a little sinus trouble, but easily taken care of, and no lung involvement. I was also tossed into remission fairly quickly. My kidney doc put me on pred. immediately. Confirmed my diagnosis. Visited the Mayo clinic in Rochester only to discover the pred. was enough to knock me into remission. Mayo sent me back to my kidney doc and said start pred. and cellcept treatment. I was able to skip cytoxan. 6 moths of pred. was bad enough, can't imagine adding to that.

Since last being on the site I had a kidney transplant (my uncle was the donor) in Oct. 2010. Approaching 1 year this fall. My kidney functions have been amazing after surgery, better then the U of MN had expected. They, and I are very pleased with my progress to date. As we approach 1 year I am now beginning to consider pregnancy. At 35, I know my chances are tougher. My husband and I have been married just 2 years (I was diagnosed 6 months after meeting him, and he stuck it out with me). I would love to start a family with him, and hope to find other WG patients that have gone through a pregnancy. The transplant is not our biggest fear, it's the WG.

Thanks for reading, and I look forward to reading more posts and trying to catch up.

Heather

[GARYfromBOSTON]

Heather, thanks for sharing! Glad things are going well and the transplant was a sucess. Sound like your hubby's a good guy. Good luck with the family plans! :biggrin1:

[elephant]

I had a kidney transplant, I now have two adopted children. The doctors thought it would be best for me to adopt, pregnancy was risky for me because of my high blood pressure.

[Sangye]

Nice to see you again, Heather. I'm happy to learn that you're doing so well! Your case is typical in that kidney-only involvement is supposedly very easy to get into remission. I hope you continue in remission for years to come. What do your docs say about a possible pregnancy?

[Maestra]

Elephant did you adopt domestically? It is surprising to me that places like China have written in their requirements no organ transplants. Add that my husband and I have only been married 2 years, international adoption is a long shot. I know 2 people that have been trying to adopt domestically. One has gone through 2 pregnancies to have birth mothers change their minds either just before birth or right after birth. She is amazing because I don't know that I could go through that heart ache twice.

My transplant team is aware of my desire and my numbers have been very stable and I am a good candidate right now, but have to wait until the 1 year mark. Then try switching one medication. In our research it is the WG we are most concerned about. There is just so little out there on woman having children and what the WG would do.

[Brooke]

I am 30 years old, I do not have kidney involvement.
I had my son in 2006 and I was diagnosed with Wegener's in 2009. I had Wegener's before I got pregnant it just took forever to finally get a diagnosis.
My pregnancy was great, I felt good and now have a healthy 4 1/2 year old boy!
The only meds I was on during pregnancy was blood thinner shots because I had a blood clot in my calf when I was 18 years old.
Best of luck to you! I want to have another child soon!

[maria garcia]

Maestra, I have a question if you went on remission taking pred. why did you need a transplant? Im new here and trying to learn as much as possible. I baby would be wonderful. It looks like you already have a good husband by your side which it is the main ingredient.

[Maestra]

By the time my diagnosis was made WG had done a lot of damage to my kidneys. Once there is scarring in the kidney that can not be reversed. It was almost 3 years from diagnosis to transplant. At diagnosis based on my kidney function the docs gave me 2-5 years before transplant.

[Al]

I hope your desires are realized, Heather! A families is, in my experience, a wonderful thing--as Marta suggests in her video, we all need "carrots". What do your doctors say about the meds?

Al

[Maestra]

Thanks Al! We actually just met with a high risk OB and we were told by her to go for it. My trnasplant team is also supportive. I have to be stable on a new medication(imuran), no more cellcept, for 6 months. Then we can start trying. We've set our time table for how long we will try and I will not take extra measures (ie artificial insem. or hormone shots). If it's meant to be it will be. Fingers crossed! I'd love my own little "carrot". But I have three others too. A stepdaughter and 2 fantabulous nieces.

[Al]

Yes Heather. Of course the carrots can become sticks, but we need the sticks too! I always thought it would be nice that, when I became old and gray, I te kids could take care of me. Now that I have achieved that dubious goal, it always in awe that they will pick up the dinner check. Must've done something right!

Al

[maria garcia]

By the time my diagnosis was made WG had done a lot of damage to my kidneys. Once there is scarring in the kidney that can not be reversed. It was almost 3 years from diagnosis to transplant. At diagnosis based on my kidney function the docs gave me 2-5 years before transplant.

Thank you for taking the time to explain.