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. :hug1:

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]

:biggrin1: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. :D

@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.

[dunkie2202]

Welcome Nikk, it is good to know you can get on here and talk to others with the same problems. I hope this site gives you comfort and strength when you need it. Its bad enough coping with WG at 47, I honestly don't know how you younger ones do it. It's so sad to hear someone so young is going through what we are going through, from 9 yrs old OMG. I wish you all the best.

[Nikk]

Thanks guys! :) I actually just got home from the ER, such a bummer. Every virus is multiplied by a thousandfold when you're on immunosuppressants. Blech.

[elephant]

Hope you feel better soon, rest!

[Jaha]

Welcome Nicole,

I think you must have amazing strength to overcome such hurdles at such a young age. I am amazed that you can also manage to work on a college education with all that you have been thru. You should be very proud of yourself for having such great determination. I am glad you found this connection and look forward to hearing more from you.
Jana

[Brooke]

Get wells soon! I too was in college when a lot of my sypmtoms started and I graduated college in 2006 and wasn't diagnosed with Wegener's until 2009! I wish you the best of luck during your college years, don't push it too hard :)

[Natalie]

hI NIkk , I was around 19 when I first started getting symptoms you have been threw so much , as have all on this site . hope you can find some answers to some of your questions on here and met and make some new friends . :) nat

[marta]

Hey Nikk, Sorry I didn't get to welcome you sooner but you know how Wegs goes... sometimes you're forced out of the loop for a bit. Welcome to this site. It has been a life saver for me, physically and emotionally, it's an amazing collection of amazing people. You sure have had to deal with a lot of nastiness at a time when you should be dealing with more fun stuff. I'm sorry to hear that but you sound like a great spirit and that is what makes this all a little more bearable... does that make sense? It does in my head.

Anyways, I'm the babbler on the forum, so when you see a post from me, it usually goes around in circles and doesn't really say much, but my heart's in it.

All the best and hope that your latest bout didn't set you back. Ugggh viruses is right. Double ugggh bacteria.

marta

[Thakator]

Welcome, Nikk. Like you, I am from Upstate NY; grew up in Watertown but have lived here in Kentucky for 37 years. Also like you, I have experienced the ravages of WG for years but I've only recently got the definitive dx. Unlike you, I am an old fart of 65 who is retired - - and thus my dealing with this disease becomes considerably easier than it is for one of your age. And with that acknowledgement, I join the others on here who have saluted you for your courage, your tenacity and your determination to push on with life rather than letting this bugger of a WG keeping you down and out of it.
Hang in there and keep sharing your story; it is great testimony for all of us and especially for those of your age group who are likely suffering alone amongst their peers. You can help them simply by being yourself and telling that story. The best to you, Ron

[Terri]

Nikki, I had sent you a private message to answer your question about my leg. I had been having trouble with my computer, I don't know if you got it or not. Plus from this reading you may still be in the process of moving. Which part of Va.?
Ron, I'm glad you've joined us here on the forum. We need to hear from old-farts too!:tongue1:
I'm almost there. I think any disease is hard enough to cope with but being so young and adding this onto all of life's problems has to be a challenge. I hope they can come up with more reasons to avoid certain things that could be the cause of wegs.
I have an aunt that lives in Vine Grove Ky. Are you familiar with that town?

[Thakator]

Thank you,Terri, for the welcome. I am getting much out of this gathering place; knoweledge, the dispeling of fear that comes with the unknown of our particular disease, the feeling of being amongst others who truly understand what lies ahead as it pertains to this change in my life - - and hope.

I am a naturally positive person who has had a sobering experience (as have we all when first realizing the potentiality of WG and what it could mean to us and to our families), a sobering experience in an environment in which it is nigh onto impossible to find anyone who's even heard of this thing other than those in the medical profession. And not even all of them! Naturally positve, yes, but it is the reading of your experiences and those of your fellow weggies on this forum that has infused that positivity with life, life that comes from the breath of hope which derives from seeing how so many others have successfully tred this path even though it is a path which is oftimes filled with pain and angst.

I am familiar with Vine Grove; it's about an hour and a half drive from me and is quite close to where my 16 year old grandson resides. Might even look somewhat like SW Pa. Thanks again, Ron

[Nikk]

Thank you for all the welcomes, guys. :)

I did get your PM just now Terri. I apologize for not getting back to you sooner, I have been busy with my move. I just got settled into my apartment yesterday, so I should have more time now. I moved into the Roanoke area, and so far I love it here.

[Terri]

Glad to hear you are getting settled in. I wish you the best with life in general but especially your health.
My husband & I have a place on the eastern shore and like to go every chance we can. We like fishing in the Chesapeake, however, this year we just didn't get to go as often as we would have liked.
I always feel better when we go to Va. I don't know if it is the lower elevation or just the fact I can let my problems at home and be stress free for a few days.
You've come to the right place for info and support. If you have any concerns, let us know. I've had my mind put at ease more than once on this forum.
Take care.:smile1:

[Terri]

I am familiar with Vine Grove; it's about an hour and a half drive from me and is quite close to where my 16 year old grandson resides. Might even look somewhat like SW Pa. Thanks again, Ron

I have never been there myself but my Aunt says it is similar to Pa. She always wants me to come and visit.
I think you will benefit from this forum Ron. Questions, concerns, just needing support we are here for you.
I too, consider myself more fortunate then some who have been "blessed" with this disease. So far, I have avoided the sinus issues and my kidneys and eyes are still working, so yes, I am blessed.
A few weeks ago, I spent the day with a good friend (younger than me) she has MS. Believe me, I am blessed! I hadn't spent any personal time with her for a few years and didn't realize she had deteriorated as much as she has. She is always happy go lucky, not complaining, just goes. Her left leg is just dead weight and with help she can scoot her right leg along. For the past 6 months, her husband has been dealing with some type of cancer in his sinusus and has had 4 plastic surgery's so far. As I said, she just goes on with out compaining. Sometimes when I'm having a bad day, I think of her and my problems seem a little less.
Hope you are having a good day and that goes for all the weggies out there reading this post.:biggrin1:

[Thakator]

Thanks, Terri. And, you are so right in saying how blessed we are in comparison to how it could be - - and how it so manifestly is with many of those around us. I see them just about every time I go to the clinic or to the hospital. Saw it in the fear of a mother from the Kentucky mountains who held her five year-old son in her lap while we were awaiting our MRIs, one for me and one for him. Heard the fear in his voice as he kept saying, "Mommy I want to go home." Five years old - - and he was already on his second full round of renal canceer. Five years old.

Yes, my newfound weggie friend, we are blessed. I remember holding each of my sons in my lap while in the rocking chair and relaying to them (just as soon as they could begin to comprehend the words) the Chineese parable about the man who complained because he had no shoes - - until the day he met a man who had no feet. I believed it then, believe it now. Curve ball thrown our way or not, we are blessed. Ron

[Sangye]

I know a lot of kids with horrible diseases--some whose cancers are so aggressive and difficult to treat that they're on multiple heavy-duty chemo drugs at once plus radiation treatments for months at a time. Some have been in treatment for years-- most of their lives. It's easy for me to get depressed about being in such bad shape in my 40's. Then I remember these kids who have never known good health. Those that survive will never have good health in the future due to the damage from the chemo and radiation.

And even those kids have it better than so many kids in the world without access to medical care. What suffering there is in the world.... :sad:

[Jack]

There are always plenty who are far worse off than anyone on this site. I might be in a fairly ropey condition myself, but then I think of the younger people I have known who have since died and think to myself that I have already managed better than they did (in terms of years at least).

[elephant]

I often think of my mortality and how lucky I have been, having this disease since 12 and really not being treated for it most of the years. I am in my 40's ! My good friend's daughter has leukemia and she was diagnosed at the age of 9 months. She has been through chemo and almost died of pneumonia. Now she is three years old in remission but needs to be check out monthly and takes Bactrim every other day. She is a normal 3 yrs old with a little developmental delay secondary to being hospitalized most of her life.