New Here and VERY scared (Long post)

[Christine1219]

My husband has been extremely ill since the end of September. He was having a lot of pain in his pelvis and prostate. The urologist began by ruling things out - no kidney stones, no bladder or kidney issues, etc. This led to them thinking prostatis. He was being treated for that about 2-3 weeks and was deteroriating. Was not responding to any oral or IV antibiotics. He was in such severe pain and could not empty his bladder that we brought him to the ER. CT scan showed bladder outlet obstruction which they were attributing to an enlarged prostate. They put in a foley catheter and sent him home with pain meds. It was a terrible weekend. He suffered incredibly. Monday we went back to the ER and he was admitted. The urologist did a partial TURP (trans urethral resection of the prostate). Clinically nothing was adding up. He was in the hospital a little over 2 weeks when they came in and said there is nothing more they could do for him! They did another CT scan to check on the prostate and the lower lungs were visible in the CT scan and showed lesions. They thought the infection was seeding to his lungs and heart. They did a bronchoscopy and that is how he eventually got his diagnosis of Wegener's. They started him on Prednisone and Rituxan. He was in the hospital for 22 days, came home for 4 and had to go back because of high temps and an extremely high white count. He is home again, but not doing well. He has a very aggressive cough that produces a lot of bloody sputum. He is in constant pain in his sinuses and he has since hurt his hip and is using a walker. My husband is only 37 years old and we have 3 young children ages 4, 2, and 6 months. The MD's said his case is very unusual to how it began. I am here seeking support and wondering when/if things will improve for us. It has been so bad for so long. This disease is truly ruining our lives.

[Dirty Don]

Welcome Christine, you are in the right place for direction, caring, confidence, and experiential knowledge. If you have time, put your husband's symptoms in search on here...you should draw some similar threads compared to his. Ask lots of questions, everyday if you have to...someone is bound to be on here anytime of day or night. The unfortunate part of what appears to be a serious onset that most of us recognize (I spent 17 days in hospital, 10 in a coma, and at least 6 mos on my couch at home before I even began to feel right again) is that it takes the drugs somewhere in the 5-6 week range before they show real progress. Sighs...yeah, it's a long road, especially for those of you who are young and with families. Generally, with rtx and pred, there will be some improvement in about 3-4 weeks. Depending on the dosages of pred he will feel slightly better (though not disease-wise...no cures yet) as the pred is nearly an immediate reaction. How much pred is he on, how many doses/infusions of rtx has he had? AND, most of all, you need a WG experienced doc to run the show...if you don't have one (usually a rheumatologist), then there are ways to link up your docs with experienced WG docs thru the Vasculitis Org. Docs who mean well, but don't know this disease other than reading protocols from a book, generally don't get the patient up to speed correctly or fast enough. Get in contact with WG docs, please. Of course, part of that depends on where you live...and, one more, be assertive with your docs...they are YOUR employees...don't take their answers for granted...ask, search, ask again...

Best to you both, stay on here Christine and ask, vent, share...it all helps.

[Christine1219]

Thank you so much Don! Receiving your message has definitely provided me with a feeling of hope after much anxiety. My husband is taking 60mg of prednisone daily. He has had 2 rtx treatments and is getting his third tomorrow. He will be receiving that infusion at the oncologists office. He does have a rheumatologist. Do you know if there is a specific place that specializes in WG i.e. like a Dana Farber or Sloan Kettering of the WG world? I am so glad to have found this forum. Thank you again!

[JeanMarie]

Christine, good advice from Don & I can't really add anything. The part about having a rheumatologist experienced with wegs is most important. I'm so sorry your family is going through this & I hope your husband will be feeling better soon. Your reaction is similar to mine when I was first diagnosed-I remember thinking "this is going to ruin our lives" but it hasn't. I do have a new normal--things are different but still life can be good. Also, go to the vasculitis foundation web site & read through their info--the more you know the better off you will be.

[JeanMarie]

In answer to your question to Don-here's a list of docs recommended by the foundation VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/)

[Dirty Don]

Phil, on here, knows more WG docs and people than anyone on here, so you may PM him or he'll see this eventually. Again, locale can affect who you get to see and how fast...also, some insurances don't go for the big research hospitals, which are the best at handling this disease. Cleveland Clinic, Mayo in all locales, Johns Hopkins, and many other research hospitals recognize and deal with AIs very well...as well as can be expected that is. If none of this is a problem for you two, then I'd search out the best that is nearest me. I live near Phx, had ideas about going back to Oregon some day, got WG, have Mayo here...'nuff said, not going back to Oregon nor leaving Mayo anytime soon!

[whatthewhat]

Hi Christine,

I am so sorry for what you all have been through. I am grateful, however, that he has a diagnosis now. Don has such wisdo:hug2:m, as do do many on here. I will just add that taking one problem or symptom or medication at a time helped save my sanity in dealing with my daughters diagnosis. I easily was overwhelmed by things i read or feared might happen, and i found i did better when i focused on three task at hand so to speak. Hang in there. There are better days ahead.

[Debbie C]

Hi Christine and unfortunatly welcome to the forum. Sorry for the suffering your husband is going thru ( as well as you and your children ) this disease does effect the whole family. And to go thru it over the holidays must be really hard. Like Don mentioned your priority is getting a dr. that has knowledge of wg. Since it can effect every organ in the body you will find that you will have a list of drs. you will be seeing. But hopefully the rtx will kick in soon and the pred .will help. I will prayer that he is well enough in time to enjoy the holiday season. Keep us posted.

[annekat]

I'm sorry you have reason to be here, Christine, but welcome, and keep participating here however you feel you need to... Don is right that you can learn a lot by searching the archives of the forum. The way your husband's disease started out really sounds unusual to me, but then Wegener's can affect any part of the body and can be capricious in how it decides to manifest itself. I also had the lung lesions that they found in your husband, after a couple of years of being undiagnosed with lots of sinus and ear problems. That is a more typical story. Well, I don't have a lot to add right now to what others have said, except I don't know if anyone mentioned that there are a lot of rheumatologists who aren't experienced in treating WG and don't know a lot about it. So I guess we'd like to know where you live and get treated and whether your rheumy might be a reasonably good WG doc. And Don is also right that Phil knows a lot of good WG docs who aren't necessarily on the VF list.

Most of all, I hope your feeling of being scared will subside somewhat once you know more, have read of others' experiences, and when you start to see some improvement in your husband. It sounds like he is getting the right treatment, and September is not that long ago to have started getting ill with WG. As others say, it could take a few months to see a lot of improvement. Do hang in there and keep us posted!

[Ole68]

Hi, Christine.
I've had WG since 1996. I was lucky in that I'm close to Mayo Clinic, they diagnosed it and have kept me going. I have it in my lungs and kidneys, but it's in remission. My physician is Dr Specks a leading expert on the disease. Hang in there, I'm still around and enjoying life.

[Allisonquast]

Hi Christine. I am a wife of a Wegs guy too sorry you are having such a tough time. We just began this journey in June so we are not the experts like others on this forum. I do know that a specialist is crucial and recovery is slow and frustrating frustrating. Don't be afraid to ask questions and be your husbands advocate! Some men just don't want to bother the docs with questions. I can be the nag! Good luck and keep us all posted. Where do you live?

Allison

[windchime]

Hi Christine,

Welcome to the forum. Like everyone has said there is a wealth of information on this site and people that have been through just about anything. It is a good place to get questions answered, express your fears, or to just vent. Sorry you had to become a member of our "elite little club." With that said I'm happy for the support that is here. Better days are ahead for your husband and family. Keep us posted please. I also agree to finding a good Wegs doc.

[mishb]

Welcome Christine,

I am so happy that you are here for your husband.
It must be so hard with such little kiddies as well. All our carers (mums, dads, husbands, wives, partners, friends) need to be thanked more often for all that they do, and for all that they put up with.

Ask any questions that your husband may have - we are all over the globe on here, so someone, somewhere, will be able to answer for him.

I'm glad he is receiving RTX infusions and hopefully he will start feeling better in a few weeks - just in time for Christmas.

Take care

[DJS]

Welcome to this group. I'm a caregiver also and can share the feelings of being helpless while your mate is near death.
The one good thing is the treatment that he is getting, that combination seems to bring it under control the quickest.
But it will take awhile for the new normal to kick in. In the mean time get a handicap parking sticker for all of the Dr visits for the next 6 months. Hopefully you live somewhere that will be conducive to walking for exercise. The other key is the blood tests to guide the tapering off of the pred. Read all you can about that drug and how to stop it. That will be the next big thing. Good luck from Minnesota!

[Christine1219]

Don, I saw that you were on your couch for 6 months before feeling right. What was the status with your job? My husband works for a small company that does not have short term disability. His employers have been very understanding and supportive so far, but I am very worried about his position. I currently work two jobs and since I just came off of maternity leave, I am not eligible for FMLA until May 2015. So, in addition to the constant worry about my husband's health, we also have financial and work concerns, and our 3 babies. Thank you everyone for such a warm welcome and the support. Again, I am so happy to have found you all.

[Alysia]

Hi Christine,
I don't know what is harder, to be a weggie or the one who take care of...
your husband is blessed to have you, so devoted and caring.
rtx is a great med. a miracle. but it takes time...
meanwhile you have us with you.
this forum, for me, is life saving, physically and mentally.
so, you come to the right place. welcome.

[Dirty Don]

Sighs...I have no job...just an old retired golfer!! Just kidding! But, I am retired, so my situation, other than the disease, doesn't compare to your husband's. Many on here work with WG in their lives...I know it's a struggle and very 'iffy' at times. But, if his employer is understanding AND knows about the kind of disease your husband is now stuck with...then there will come a time soon when he returns to work if only part time at first. The drugs really should help him feel close to normal again. Once he continues work, and he will, his home and daily life will change a lot too. He will be tired, perhaps depressed from time to time (depends on his attitude and ability to stave off the WG effects at times), and many of his evenings will be spent resting instead of chores/duties/meetings, etc. Depends on how bad this is for him and how he reacts to the drugs in the long run. I have a great support system in my family, and most of all, my wife...she keeps me balanced when I think I'm falling, laughing when I think I'm depressed, and she tells it like it is which, no matter how much I whine, is how I like it under these circumstances. Hang tough C...this will feel as if you have the disease too at times...and you will tire of it and try to put it in some corner of your mind...but your heart will tell you he needs your help and understanding as far as you can extend it. This will be as tough on you as it is on him...hang in there...it does get better, just not normal again! Sighs...reaches for cup of coffee...somedays it's hot, somedays it's cool...no matter, I still drink heartily from the cup! Take care!

[windchime]

Don, I saw that you were on your couch for 6 months before feeling right. What was the status with your job? My husband works for a small company that does not have short term disability. His employers have been very understanding and supportive so far, but I am very worried about his position. I currently work two jobs and since I just came off of maternity leave, I am not eligible for FMLA until May 2015. So, in addition to the constant worry about my husband's health, we also have financial and work concerns, and our 3 babies. Thank you everyone for such a warm welcome and the support. Again, I am so happy to have found you all.


The financial aspects of this disease can be depressing. I would suggest applying for social security disability. It will ask if you (your husband) expect to be disabled for more than a year. I would say yes. You can complete the application on line and the clock starts ticking as soon as you submit it. If you are approved you start getting a check in 6 months. I would apply and if he isn't down for a year then you won't need it. However, I would file the paperwork to get the clock ticking on the 6 months. The online application is easy, but you can also go to your local social security office. The United States Social Security Administration (http://www.ssa.gov)

[Christine1219]

Don, you are truly awesome! As is everyone else here. You all make me hopeful that it is possible that my husband will return to work, the golf course and playing with the children :rolleyes1:

[marta]

Hi Christine and I too am sorry that you had to search us out but glad that it is here you landed because this group of people on here has literally saved my life, possibly more than once.

All the advice you're getting is golden and I don't have much to add to it. I'm only thinking of one possible question for your husband's docs. I know that in cases where there wasn't much progress and the situation seems to be going downhill after treatment, there is the option of plasmapheresis... which is a process that removes your blood and cleans your plasma and then infuses it back into your body. It's kinda like dialysis but for your plasma. I know that Jack had it done a few times, when the proverbial poo hit the proverbial fan. But this is why you need a WG specialist... they know what the options are, and what to look for and when to jump into action. We've had many discussions on here how the biggest problem once we get a diagnosis is being over-treated or under-treated by a well intentioned but ignorant in WG health professional. I was under the care of such a doctor and it almost killed me.... it was this group pushing and pushing me (and I pushed back because it seemed impossible from my town) to get an expert, but I finally did and it was the best thing I ever did for myself and my family.

One other thought I want to share with you regarding the kids. I remember getting driven home after the hospital and seeing a mom and a kid walking down the street hand in hand.... my daughter was 3 years old at the time. I started to cry because at that moment, I couldn't even imagine being able to walk down the street holding my daughter's hand... I truly felt that physically defeated by this disease. But Hana and I go skiing now, we go for hikes, we wrestle, we squak at each other and I love every single moment of it. I can't do the physical feats I use to be able to do, but I spend quality time (both emotional and physical) with my monkey - she's 7 years old now and getting fast on her bike and running, but I can still keep up (for another year or two - ha ha)... So there is a light at the end of the seemingly endless tunnel. I promise.

Baby steps forward. The biggest lesson I got out of this disease, is the baby steps concept. Just celebrate every single little step in the right direction - focus on the positive forward momentum and deal with the negatives without giving them too much power.

All the very best to your family in this insane time. Know that this too shall pass.

[KimH]

Hi, I live in NW CT and went to see Dr.Lebovics In NYC. He is an ENT and on the board of directors of the vasculitis foundation. There is a Dr Spiera in NYC who is a rhuematologist and there are drs up in Boston. Dr lebovics did an amazing consult for my rhuemy. The vascultis drs are caring people. Since your husband is so sick right now and that you have your hands full perhaps a phone call to one of the vasculitis centers. like boston, might give you some answers/ guidance. Finally going to see a doctor who has seen hundred of patients like me was the best thing I have done for myself through the course of the disease. For me seeing Dr. lebovics was all I needed as " fortunately" the disease has remained in my sinuses. Thinking of you.

[annekat]

Hi, I live in NW CT and went to see Dr.Lebovics In NYC. He is an ENT and on the board of directors of the vasculitis foundation. There is a Dr Spiera in NYC who is a rhuematologist and there are drs up in Boston. Dr lebovics did an amazing consult for my rhuemy. The vascultis drs are caring people. Since your husband is so sick right now and that you have your hands full perhaps a phone call to one of the vasculitis centers. like boston, might give you some answers/ guidance. Finally going to see a doctor who has seen hundred of patients like me was the best thing I have done for myself through the course of the disease. For me seeing Dr. lebovics was all I needed as " fortunately" the disease has remained in my sinuses. Thinking of you. Kim, I'm glad to hear your visit with Dr. Lebovics went well! It must be nice to know you are being cared for by the best. Now you can enjoy the holidays.:smile1:

[Christine1219]

Hi Kim,

Thank you for the information. We are in CT also (Fairfield County). When my husband improves, we can look into NYC and/or Boston. Thanks again!

[Christine1219]

I am having an extra anxious day. I was going to include that in my post this morning but didn't because I was hopeful it would pass. But, it has not. Hubby had a bad night. His coughing was very bad through the night and this morning. He had his last rituxan infusion today. I thought that we would have seen more improvement by now. He is completely off the antibiotics and we are fearful of illness. My mind has been racing all day. I don't know how you all stay so strong.

[annekat]

I'm so sorry you and your hubby are going through this, Christine. I've heard that RTX does take some time to work. I hope and pray that things will turn around for him soon.

[Dirty Don]

Anxiety is part of this disease. Don't know how 'deep' the cough is, but if it IS a deep one, he has to be careful of pneumonia on top of this...if it's one of those irritating coughs that is more in the upper airways I was simply told to suck on sugarless candies/drops, etc. It worked...it continues to work as I still cough but not nearly as badly as in the early days. Hang in there, both of you.

[annekat]

There is coughing of all types with Wegs. I'm not presently too worried about any of my coughing, but sometimes it sounds so bad that people may think I'm either about to die or have a very bad, contagious thing, like maybe bronchitis or a very bad cold. But it is just stuff that has originated in my sinuses and collected in the upper part of my bronchial tubes. It sounds the worst when I'm about to cough something up. Then, once I do, everything is clear. I'm not saying that your husband's cough is not something serious, or that it is normal at this stage of treatment, because I don't know. But there is the possibility that it sounds worse than it is, as in my case. I have noticed it happens a lot more with the colder, drier weather. However, I know he's at an earlier stage of treatment and you would be wise to touch base with your docs about any of your concerns. Best wishes to him and you.

[whatthewhat]

I'll just add that Rtx does take months to really sink in, so to speak. Hang in there. This is the worst part, but it gets better.

[Evie22]

Hi Christine,

Great that you found this informative site, and lots of support here. When I was first in hospital ,it was for six weeks, and I was hemorrhaging from everywhere, and only for the luck of a Dr. who had trained in the Mayo Clinic, I would not be here. Having said that the treatment 17 years ago was much harsher then now, but I think it kicked in faster. It must be a very frightening and exhausting time for you with such young children. If you could make sure that your husband it propped up on as many pillows as possible, maybe this will aid his cough and drink loads of water.

[Christine1219]

As I mentioned, we have 3 children ages 4, 2, and 7 months. The 7 month old is home with us as I am still breastfeeding and need him home at night with me. Then in the daytime he goes to my parents or in-laws when I go to work. I am sleeping on the couch and my husband is in our bedroom. Our 4 year old and 2 year old have been taking turns staying with my parents or his parents. I desperately want them home, but my husband is terrified that they will get him sick. I even got him masks, but he is so scared to have them home. Is the immune system in WG always like this? Or is it just while he is going through the rituxan? Or will it be like this for a number of years? It just seems crazy that our kids can't live in our house. This is killing me. Any info will be much appreciated.

[Dirty Don]

Your husband is experiencing, thus your family, the paranoia of WG because it is such an unknown. Totally natural...but he must understand that he is being super careful when he doesn't really have to be. My pulmy told me that while I am to be careful of infections, I am also just as capable as recovering from a cold/flu as the next person as long as I'm on the drugs...or, in remission w/wo drugs. When I'm around my grandchildren I think the same thing, but, for one, I'm not giving up the hugs and slobbers and 'I wants' for this disease...it doesn't harm them or me. Secondly, as long as your husband continues to follow protocols he will get better and all these emotions will become secondary. The kids can come home, in my opinion. They will learn they can't always be jumping on him, and he will learn he can try to jump with them...not fair to either of them to not experience some forms of 'family'. The kids will not get sick from this other than being isolated from dad...and he needs to realize that there's more than just his health at stake here...no, he will most likely not get any sicker than he already is with the kids around.

[Pete]

I just came through two infusions of rtx about six weeks ago. I also have two grandchildren (ages 2 years and 8 months) whom I continue to see two or three times a week.

As long as the kids are either staying at home or with their grandparents (not in a day care center), you probably won't catch anything from them. Just take normal precautions regarding hygiene.

[annekat]

I agree it is OK to have the kids at home. Just take precautions such as frequent hand washing and using hand sanitizer often. If one of the kids catches something, or has been around another kid with something, by all means I'd keep them away from your husband temporarily, but not to the extent of taking them out of the house. I haven't heard of anyone on here who has done that.

[Barbara N]

My husband has been extremely ill since the end of September. He was having a lot of pain in his pelvis and prostate. The urologist began by ruling things out - no kidney stones, no bladder or kidney issues, etc. This led to them thinking prostatis. He was being treated for that about 2-3 weeks and was deteroriating. Was not responding to any oral or IV antibiotics. He was in such severe pain and could not empty his bladder that we brought him to the ER. CT scan showed bladder outlet obstruction which they were attributing to an enlarged prostate. They put in a foley catheter and sent him home with pain meds. It was a terrible weekend. He suffered incredibly. Monday we went back to the ER and he was admitted. The urologist did a partial TURP (trans urethral resection of the prostate). Clinically nothing was adding up. He was in the hospital a little over 2 weeks when they came in and said there is nothing more they could do for him! They did another CT scan to check on the prostate and the lower lungs were visible in the CT scan and showed lesions. They thought the infection was seeding to his lungs and heart. They did a bronchoscopy and that is how he eventually got his diagnosis of Wegener's. They started him on Prednisone and Rituxan. He was in the hospital for 22 days, came home for 4 and had to go back because of high temps and an extremely high white count. He is home again, but not doing well. He has a very aggressive cough that produces a lot of bloody sputum. He is in constant pain in his sinuses and he has since hurt his hip and is using a walker. My husband is only 37 years old and we have 3 young children ages 4, 2, and 6 months. The MD's said his case is very unusual to how it began. I am here seeking support and wondering when/if things will improve for us. It has been so bad for so long. This disease is truly ruining our lives.

Things will get better, it doesn't feel like it sometimes but you usually get a break from time to time. I seem to have a lot of similar problems as your husband. My kidneys have shut down, I have tracheal stenosis, a bladder infection, sepsis, that won't go away. Some how it seems to pull it together and give you a break. Yes, this does control our lives. I am lucky because I ride and that helps a lot physically and mentally. Take care and try and have the best Christmas ever, Barbara

[woz]

Hi Christine, this is the place to ask as many questions, as you can, write them down, as you think of them, and then post them when you go online. Ask anything, the more you know, the easy it will be when you go and see the doctor. When I came out of hospital, I was extra careful with my hand hygiene, and still am today, anyone who comes to my house knows not to come if they are coughing or sneezing. I first became ill, exactly 1 year ago, took 3 months to find out what I had, sinus problems(inside my nose rebuilt), red eyes, kidney and lung involvement, aches and pains, fevers sometimes 3 a day, headaches from hell, lost 20 kilos, as well as other bits and pieces wegs affected. Thee months on cyclo (200mg), bactrim 3 days a week, started on 100mg pred tapering down about 10mg per week. 3 months later changed to , 150mg azathiaphrine and started to taper pred from 30 mg down to zero ( off pred about September), I went back to work, end of June 20 hours per week, and then slowly increased it till I was back full time.I drive a truck for a living, reasonably physical job. I am currently on a maintenance dose of 150mg azathiaphrine, and will be on that for about another year. This disease affects everybody, in many different ways, I know I am one of the lucky ones, and your husband could also be, time will tell, eat healthy, listen to your doctors, ask them as many question as you can, don't forget to write them down.

All the best to you and you family.

Regards Woz.

[Evie22]

Hi Christine,
Sounds like hubby is in panic mode and very understandable as it is all so new and scary, but this is distroying your young family, he needs to consult his medics on precaustions, it took me 18 months to get into remission, a happy medium has to be put in place for you and the children. If he has doubts about the health of anyone around him then yes wear his mask, I personally use lots of Tea tree to clean surfaces , have a dab of Lemon Myrtle under my nose, keep my hands well washed, and get on with my life. And you need to take better care of yourself, you are going to need all your strength to keep going and hubby need to realise this is effecting more then him, harsh but true. The road has plenty of bumps but it will get easier when everyone gets used to this lifelong condition.