New from New York!

[Nikk]

Hi everyone! I'm not exactly sure what to write here, so I'll just give you a little run down on me. My name is Nicole, and I'm a nineteen year old college student. I was diagnosed with Wegners when I was nine years old, in 2000. It took a few months to diagnose me, because the disease manifested itself sort of backwards and attacked my kidneys before anything else. That added to the fact that only a few doctors had ever heard of the disease, let alone in someone as young as me, made it tough to figure out.

They eventually did figure it out, but only after my kidneys had completely failed. I was on dialysis for about three and a half years until I had a kidney transplant in 2003. I've since been doing pretty well, with only a few hospitalizations a year, some more severe than others. I had to withdraw from my second semester of college because of it. It has also caused another condition called Intercranial Hypertension, which I hear is rather common in people with Wegners, so maybe some of you here also have experience with that?

Anyway, I take a lot of medications some of which including Prograf, Imuran (similar to Cellcept), Diamox, and of course Prednisone. However I've taken pretty much everything else out there since I've been dealing with this for so long! It's nice to find a supportive group of people for this, as I'm pretty young and not many of my friends understand my disease. I feel pretty alone in it sometimes, and I'm excited to talk to other people who have experienced this.

[Jack]

Hi Nicole and welcome to the forum!

You will find a lot of others on the site who can share and sympathise (if you need it ) with your position. I was diagnosed 25 years ago with a case similar to your own and have been living with my transplant for 20 years. I'm sure you will agree that it is the best thing that can possibly happen.

Feel free to join in on any conversation you like or raise your own questions. There is still always a lot to learn even for us old hands.
If you're having a bad day, you can have a bit of a vent on the forum about that too and everyone will know how you feel and give you a virtual hug!

[Geoff]

Hello Nicole,

Welcome to our big extended family, I hope you will find the support and company you are seeking on this forum.

When you get the chance I would like to hear more about your journey so far.

[elephant]

Hi Nicole, I too had a kidney transplant, and I was 12 yrs old when I started to have symptoms. I had my kidney for 21 years and my kidney is doing good. Are your medicines that you take for your kidney transplant keeping your Wegeners in remission?

[Sangye]

Hi Nicole, welcome to the group! I'm glad you found us. I can't imagine being so young with Wegs. You can really be of help to other young Weggies in the group, as well as to their parents.

I also have intracranial hypertension (aka elevated intracranial pressure aka pseudotumor cerebri). However, it isn't common at all with Wegs and isn't actually related to the disease. It's more likely a result of steroids causing weight gain and/or fluid retention. JHU has a "Pseudotumor Cerebri Team" and they've confirmed this. Mine stays well-controlled with meds, though. I hope yours does, too.

[JanW]

Hi, and welcome Nicole! I am right outside of NYC and see doctors in NYC. What are your main areas of involvement at this point, and what hosp/docs do you use if you don't mind my asking?

[Brooke]

Hi Nicole and welcome to the group I am 29 yrs old and I was diagnosed last year, I have mostly sinus and upper airway involvement.

[lafounk2]

Hi,
My name is Kelly. I'm mom of my oldest son, Joshua, age 17. Josh was diagnosed in April 09. He had blood clot in left leg, sinus and kidney involvement when diagnosed. He will be on dialysis 1 year on Nov 18. He's ready for transplant but so far nothing yet. A few people testing done to see if they could be his donor, but each got eliminated due to health reasons. His dad and I are not Josh's blood type as Josh needs donor with bloodtype B or O.

Anyhow, glad that your transplant is doing ok. It fears me so to think of rejection. Is your Wegener's staying in remission being on immunosuppressant drugs? Josh is currently on 5 mg. Preg, Immuran, Blood pressure meds, Lipitor (cholesterol), Levothyroxine (thyroid issue), and others for dialysis.

We live in update New York (Chazy, NY) which is appx 5 hrs from NYC near the Canadian border. Josh sees Dr. Peter Merkel at Boston Medical Center every 3-4 months. Actually we have an appointment on Monday.

Anyhow, wish you the best and thank you for finding this wonderful web site to share your story

[Nikk]

Thanks for the welcome, everyone! To answer all of your questions, the anti-rejection medications I take for my transplant do help keep my Wegners in remission. So far, I haven't had any flare ups.

@Sangye: My pseudo tumor is controlled pretty well with meds, I've only had to have spinal taps to get rid of the fluid two or three times, so that's good. Being so young with Wegs is tough, but I'm glad I can possibly be of help.

@JanW: I'm actually in upstate New York, so I go to Upstate Medical University for all of my doctors appointments and hospital stays. My nephrologist there is a peds nephrologist named Dr. James Listman, who is really great and I've had since I was first diagnosed. Although I'm going to have to give him up soon since I'm moving to Virginia in a few weeks. Adjusting to a new doctor is going to be strange!

@lafounk2: I wish your son much luck for a transplant. My mom is the one who donated a kidney to me. Being on immunosuppressants is keeping my Wegs in remission, yes. Being on dialysis was definitely not fun, but my quality of life improved by a lot post-transplant, and I'm sure it'll be the same for your son when he gets to that point.

[Psyborg]

Welcome to the site, sorry I didn't say hi before . Sounds like you've been through a lot at a young age. You younger folks dealing with this amaze me in your resilience.