Newly Diagnosed and starting Cytoxan/Preds/Bactrum today

[Dirty Don]

Make the effort to connect to Cleveland or whomever is closest who has expertise/experience in this area...it means a lot in terms of how you're treated...really does. Get your local doc to get more interested in you, and make the connections to wherever you can get your best WG info from. So, nag nag nag! It's all about you now...be safe, be peristent, be patient. And you boyfriend needs to do the same...my wife doesn't understand this anymore than me, but she's patient and understanding with me and my WG foibles!! Sheesh, and I'm a handful, believe me! LOL

[Sangye]

Hope, your sister probably doesn't realize that Crohn's isn't very rare and is very straightforward. It doesn't require ultra-specialists to treat it. Regardless, it's up to you to take control of your care. No one else will go to bat for you the way you can for yourself. It's really hard when you don't feel well, but I know you'll find the strength to do it.

[Al]

Hope, your sister probably doesn't realize that Crohn's isn't very rare and is very straightforward. It doesn't require ultra-specialists to treat it. Regardless, it's up to you to take control of your care. No one else will go to bat for you the way you can for yourself. It's really hard when you don't feel well, but I know you'll find the strength to do it.

...Although many Crohn's sufferers are nevertheless told by their doctors that it is all in their head (!), rather than treat it like the nasty autoimmune disease that it is. But the point is that you do need to take charge of your situation, HK. Self-empowerment is, well, powerful, though not so easy for a sick person. This is why we are lovingly nagging you. If you need to additional medical help, go for it! If Cleveland is too far, you might try Birmingham, Atlanta (Emery), or Chapel Hill (UNC).

Al

[HopeinTN]

I honestly don't know if she even recognizes it as a disease. I'm not sure how to take her behavior but have always been so close and she's 8 years older than me. I was always there for her when she got sick, gave blood for her surgeries, always the first one waiting for her with roses after surgery...we were close. Now it's different, and I don't feel compasion from her. Maybe she's just scared for me and doesn't know how to react. She has had it rough and I'll take my Wegs over her Chrons anyday. She's had so many surgeries and a permanent illiostomy. I just wish she would be more understanding.

I will look into those other locations you mentioned Al. Birmingham and Atlanta are much closer.

[Al]

I honestly don't know if she even recognizes it as a disease.... I just wish she would be more understanding....

It really is hard, HK, to explain to others what this disease is all about. Sometimes, it seems best just to say that it is a really nasty, non-contageous autoimmune disease and leave it at that. And sometimes, a little more detail will help, though not with everyone. For freelancers like myself, going into too much detail will scare the clients off unnecessarily, I've found. For them, I have reverted to the simplified version.

Let us know if you find a closer vasculitis specialist....

Al

[HopeinTN]

Now I’m really concerned. I started having very sharp pain on the back side of my gimpy lung. This pain comes and goes and is very deep and sharp. It progressively got worse and in addition I was experiencing shortness of breath and a feeling like someone was sitting on my chest. I had workers at my house yesterday so as soon as they left I headed to the ER. I was very scared as this pain was the exact location of the pain I had with a pleural effusion and really close and as bad as the pain from a kidney stone and subsequent infection.

(Keep in mind- this is the hospital where my dr.’s are and all my records can be accessed with a click of the mouse. They are aware of Wegener’s and my current treatment)

First I got to Vanderbilt at 7:30 pm. Waited 4 hours before seeing a doctor. They didn’t want to do any more CT scans because I’ve had so many so they did a chest x-ray. No fluid. Did a blood test that would show if it were a clot, Negative. He then said I could run a urinalysis but it would be another hour or you can head home an get some rest….really? It’s now 1:30 am and I have no answers or anything for the pain that comes and goes with no rhyme or reason. I say, sure, please check the urine. The nurse comes back to my chair (yes, a chair, sitting straight up in a room of 4 others in chairs with IV’S- so bizarre) and ask me for a urine sample. I say, “what happened to the one the other nurse took from me”? It can’t be located. Seriously?

So, the doctor comes back and says the urine looks fine and check in with my PCP tomorrow. I left there feeling like an idiot and like I was lying. Horrible experience. I get online today to see what my labs showed from the ER (I have a Vandy log in and can check everything) there were red blood cells in my urine which no one even mentioned or were concerned about and no blood work at all. What the heck happened and how concerned should I be? So far today I’m pain free and no breathing issues, which doesn’t surprise me because as I told them at the ER,I think it’s something with the kidney.

So exhausted! Why do I feel so crazy?

[HopeinTN]

Just another reason I should get in touch with one of the specialist. I promise it's on my list. By the way, I did email my Rheumy and she's out of the country for 3 weeks but hope to get an email back from her fill-in.

[Sangye]

There is no such thing as a blood test that can rule out clots. The D-dimer can indicate a clot but is not a reliable test at all. They should have done a CT with high-speed dye (aka pulmonary angiogram) to rule out a clot.

You can have pain like that from any type of Wegs lung involvement. It has to be tracked down. There is also the chance that the pain was cardiac-related. Did they do blood work to check heart enzymes?

Any time you go to an ER and they check blood and urine, you must ask for the results before you go. Make sure they check kidney function in the blood work. Always. I don't have kidney involvement but Dr Seo orders the labs to check every month.

[chrisTIn@]

I left there feeling like an idiot and like I was lying. Horrible experience.

I know the feeling! Sometimes it's very hard to be 'assertive' all the way, with this crazy disease!
I see you got some good advice from Sangye.
I hope you soon will figure out if your kidneys are okay...

[HopeinTN]

Such good info to have. THANK YOU Sangye. I'll call them now and get copies.