Need some help!

[khaisley]

y husband is in the process of being diagnosed with WG. From what I am reading, "normal" treatment is steriods and chemotherapy, which significantly supresses the immune system. Here is the thing...my husband already has a very compromised immune system because he has no spleen. My concerns are significant and I don't even know where to begin. We should get an official diagnoses early next week, but his Rheumotoloist is pretty confident that is what he has. As soon as we get the offical diagnosis, I am asking for a referral to the Cleveland Clinic. I don't feel confident the Dr's around here have dealt with this disease, not to mention someone without a spleen. Does anyone on here have the same "no spleen" complication?! Any advise at this point would be greatly appreciated!

[Dirty Don]

Welcome khaisley, hope there's some info for your husband and you on here. Lots of good peeps with lots of info and experience are on here worldwide. From what you've said, and what I've read, splenic involvement, in this case no spleen at all, is rare with WG, but appears to be more common than thought. That being said, those with splenic involvement have done well in reacting to the WG drugs/protocols. Without a spleen, not sure, but it would appear he can/will respond well to the prescribed protocols for the WG, once you've found someone you will use for the dx/ongoing care. Get comprehensive answers, ask specific questions of all kinds...especially of your docs, and on here! Best to you.

[Pete]

If you want a referral to a specific doctor at Cleveland Clinic, I recommend Dr Alexandra Villa Forte, who treats me. I've also heard that Drs Gary Hoffman and Carol Langford are very good.

Where are you located? There may be other facilities closer that could provide high quality care.

[khaisley]

We live in Plymouth, IN. Current Dr's are in South Bend. Indy and Chicago are about 2 hours away, but considering this is a rare diagnosis and he has no spleen, I want to make sure he is getting treated by a specialist that is familiar with WG, and it sounds like the CC is the place to be! It is only 5 hours from me and worth the peace of mind! :) He had a nasal biopsy today and when I asked his ENT if he has treated a WG diagnoses, he was delayed in his answer but said yes. Then I asked "what about someone without a spleen?" He didn't say much and I felt like he wasn't too concerned that PJ didn't have a spleen. I don't know, maybe I'm making a bigger deal out of if...but I don't think so. I have decided I am going to EVERY appointment with him because he just doesn't give good information to the Dr and doesn't ask questions. I'm a physical therapist, so I do have some medical knowledge, but this disease is crazy. Thank you for replying...I have those names written down and I will be sure to ask for one of them! I just pray it doesn't take long to get an appointment for him at the CC. God Bless you and thank you for making me feel welcome

[Pete]

You're welcome.

I hope you can get in within the next couple of weeks. Your first appointment will probably last most of two hours. They'll gather a complete case history, do a thorough exam, and may do some labs. My subsequent appointments have averaged 30-45 minutes -- whatever time I need to be examined and get all my concerns addressed.

These days, when I see any of my docs for a regularly scheduled appointment, I take a written list of questions, concerns, and issues. I also keep a health journal so I have a record of how I'm feeling and any symptoms I may be experiencing. One thing about GPA/Wegener's is that symptoms can be very subtle. It almost makes you paranoid.

Feel free to ask questions, share experiences, or just blow off some steam. Someone is on here 24/7 as there are forum members all over the world.

Good luck and better health to you and PJ.

[Captian Al]

My husband was diagnosed this summer. I continue to go to almost all Dr appointments. I can so relate to your struggle to get information and understand to help in any way possible. I know Darren appreciates that he can lean on me. It sounds like your husband has a great support system as well :) Best wishes to you both!

[Debbie C]

Hi khaisley and unfortunately welcome to the forum, sorry you had to find us but glad you did,maybe you will luck out and the tests will be neg. for wg.But like Don said there are alot of knowlegable people on here and since this is worldwide there is usually someone here 24-7 if you need questions and just want to vent. I also go to the Cleveland Clinic and generally they can get you in within a week. Good luck with the test results and keep us posted.

[Alysia]

Hi and welcome,
yes, this disease is def a crazy one :crying:
your husband is blessed to have you.
is the no-spleen state of him is wg-related ? how is it affecting him ? how long is he without spleen ?

[khaisley]

I am so thankful for this site! My husband has been without a spleen since he was 10...he actually had multiple (5) of them! That actually caused some bleeding issues and it was removed. I'm not so sure if they would choose to remove it these days or not. We have been married for 19 years and he has actually been very healthy, considering he is a meat (mostly venison) and potatos guy. As we are looking back, it could of started with a rash on his hand. It would surface around June and be gone by November. It did eventally affect the top of both hands. He finally went to a dermatologist after it kept spreading and the itching was intense. Not to mention people would look at his hands/wrists like he had something contageous. The dermatologist has not been able to diagnose it for 2 years...have tried over 20 ointments, nothign would help. November comes around, it goes away. He has also had a very minor cough for about a year, we attributed that to his BP meds...then in October, the chronic, hard cough started up..sent to an allergist and a ENT (because he was having very large blood clots daily when he blew his nose). A few minor allergies, but nothing to cause what he was experiencing. ENT said yes he has some kind of infection, but he could say what was causing it. He then started using a nasal irrigation nebulizer with 3 meds. It did help clear his congestion, for several hours, but at night he was congested again. I can't explain to you how much blood/mucus he gets out every day. Then in December, he kept getting colds/upper respiratory infections, staff infection on his scalp, difficulty breathing (ER just to be told chronic bronchitis and given a breathing treatment), and finally rapid onset of severe joint pain. I was finally like "Thats it...something is wrong...all this doesn't just happen". The next day we went to his GP, who we have known for years and PJ had been seeing for all these issues. I went too, with everything he has been experiencing, how much has not been diagnosed..i was pretty blunt and said something needs to be done, now. He said he thought the chronic, hard cough was from GERD, I just looked at him and said, no way..its not GERD. I said well, then what about the joint pain, he felt that was Psoratic Arthritis, from the rash on his hand. I told him he doesn't have psorisis...that the rash on his hands has never been diagnosed and I think after 2 years of a dermatologist not diagnosing as psorisis, then he has never had it. Referred him to a Rheumatologist, got a call the very next night from the Rheumatologist office asking if we could be there at 7:45 in the morning. After the GP gave us his thinking, I went home and researched for hours and hours...I read several things he could possibly have, most fell into the Auto Immune disease catergory. I read him the symptoms of WG, and it was crazy how familiar it all sounded. She came in, we went through all the history, she did her exam...looked at the blood tests from the GP, and went back out of the room. When she came back in she said, I am pretty confident we are dealing with an Auto Immune Disease called Wegeners. I looked at PJ and said, "sound familiar?" I never said anything to the Rheumy about my suspicions. I am a Physical Therpaist so I am somewhat educated with the MD's and Specialists in our area and she is very much a "by the book" Dr. She doesn't just throw out diagnoses..she waits for proof. She is that confident that he does have WG, but still needed the biopsy and more bloodwork. The biopsy was the very next day, she wanted it that same day, but the ENT was in surgery. When he was doing the biopsy, he had to clean an bunch of junk out of his nose, it was very gross. When he took the sample, he said..oh my. Sinuses are usually firm and tough, PJ's was soft and stringy. He said that something is defenitely going on in there. I don't have any idea how long it will take to get a biopsy result, but I just wish we knew! I guess I should be thankful we are getting things done pretty quick compared to some on here, I just want to get him to Cleveland and get this going. I am not used to my husband being in severe pain and so weak. He is still working, he is a boss so that kinda helps, and is in management so not much physical labor. There are days I have to help him into the shower and get him dressed but he is not giving up. Thank you all for reading and any suggestions/guidence is greatly appreciated! I will be praying for all my new friends in this forum...God Bless Weggies and Family of Weggies, may you all find peace and strength throughout your trials with this disease.

[Debbie C]

Sounds like you have a very good rheumy where you are if she suspected it right away.Blood tests tell alot,thats's why we have to get that and a urinalysis done every month. If she is familar with wg maybe she can prescribe the meds PJ needs. Have you called the clinic yet to get a appt.? This is a very scary disease and the things you read on the computer make it worse but believe me once they get things sorted out and put him on some meds. he will start to feel better but unfortunately probably never the "same" . Don't get me wrong..alot of people go on and live a pretty much normal life but it can at times take it's toll on you. I will say a prayer for the both of you and hope he gets answers he needs to get the proper treatment soon.:hug2:

[khaisley]

She did up the dose of Prednoisone for now until she gets the other tests back. I didn't know if I could call myself or if he has to be referred by his Rheumy? If I can call, I will do it Monday...lol In the mean time I am doing what I can to minimize germs, bacteria and viruses in our home. I use a nebulizing diffuser with some essential oils, and I make him wear a mask if someone stops by and we are not sure if they are healthy or not. Maybe I'm over reacting, but since I can't find much information about WG and no spleen..i'm doing what i can to be on the safe side. thank you so much for prayers...we will take all we can get!

[Dirty Don]

This is strictly a sidenote to what you're dealing with khaisley, but the pred is not enough at this point...he's flaring. My original rheumy at Mayo was angry with the docs at Banner cuz tho Mayo had told them what I had thru pathology, they did not start me on mtx or any other such thing in addition to the high pred. She was most upset about the fact that the faster one gets the meds in them, the more damage is avoided, dangers lessened, and patients feeling better sooner.

[khaisley]

Question...he is also scheduled to go to a GI specialist on Tuesday. His GP thought some of the chronic cough was GERD...even though he doesn't have heartburn or any of those type of symptoms. Should I save some time and money and cancel this appointment? I am thinking after we see someone at CC, if they think he needs to see a GI, I'm sure they would say something, right?

[khaisley]

I think her plan was to get the test results, but wanted him to at least start the steriod. I am going to call CC monday, and see how quick we can get him in. Thank you for confirming my feelings Dirty Don! everyone that has replied has been such a blessing :) thanks!