Your Advice

[Stephanie78]

I'm sure you all know our story. I'm having a bad "Is everything going to be ok" day. I know that the disease takes it's toll on people. I realize my expectations were a lot higher then they should have been. But I look at my husband (Please don't get upset or take this part personal) and can't help but wonder "Is he dying"? Each day he seems to get weaker. He is unable to eat solids. His body heaves until he vomits atleast twice a day (Withouth the sensation of being nasueated). He stumbles when he walks. He doesn't talk to me anymore. I just am losing all spirits. I know he is going thru a lot physically, mentally and emotionally and I respect that. People walk up to me and tell me "Oh My God, I didn't even reconize him". I thought that once on prednisone he would gain weight, not continue to lose it. He goes to his internal medicine doctor on Monday. I have my BOOK of questions. But there are questions I would LOVE to ask with John NOT in the room (Just to keep from upsetting him).
I had someone (who apparently decided to research the disease) tell me last night.."Although his life has been shortened, you can't give up"... Why would you say that to me (The shortened part)?
I'm angry..at the disease, at other people and at God! I just don't understand anymore.

[Psyborg]

I think it is reasonable for you to request a few minutes to talk to the doctor. You are going through a lot, and I think at times this stuff is on the people around the patient emotionally more than the patient.

There is nothing to say that anyone's life is truly shortened. While I'm sure it takes it's toll, some people get long term lasting remission. The recovery is as varied as the disease itself from what I can tell. That was pretty insensitive a thing to say, and it's precisely the kind of thing someone might say trying to seem helpful or supportive.

Have you tried contacting the specialists and letting them know he appears to be deteriorating at home? I know you are already scheduled to go back, but maybe they'd want to see him sooner.

You've been tough through all of this, I know my family was all terrified last year when I was sick, and at this point John is sicker than I was. I will say that he's probably less afraid than you are. If I had to venture to guess the lack of talking is probably that his body is so focused on fighting that his external faculties are reduced. Please try to stay strong, we are all pulling for you and John in our own ways.

[Jack]

Life shortening? Well, as already stated the disease is so variable that it is impossible to say and it can also turn so quickly that you can't even make predictions for a particular case. As for dying, the same is true. I made a post a few weeks ago saying that if people had seen me in the condition I was in that day they would not have given me very long (emaciated, wheelchair bound, coughing up an alarming amount of blood into the toilet!), but things soon changed. Many of us have been close to Death's Door on occasions, but have managed to pull through. "Hang in There" is a favourite expression on the Forum.

A lot of your husband's mental attitude is probably due to the Pred in addition to the shock of the situation as Sangye has already posted. Please take note of her advice, since this may be a condition open to treatment. Your specialists should be kept informed about any changes in his condition and I'm a little surprised that he is not more closely monitored. In the early days of my disease I was hospitalised for ten weeks straight and was dragged back much to my annoyance whenever things started to go wrong.

[Stephanie78]

Thanks guys. Today has gotten a little better. John ate a chicken pot pie and some fruit cocktail. I spend a lot of time in the store looking for "soft" things he may be able to eat. His stomach continues to be an issue (Hurting a lot ). His color is better today as well. More pinkish then the grey color.
As for the doctors keeping a closer eye on him...The main problem is that his GP will no longer see him due to her not knowing the disease. She referred us to an internal medicine dr. He goes there on Monday and they will interact with the specialists in chapel hill. He then goes to the pulmonary dr on wed (the local one). He knows all about WG but on our first visit the CT was great. Now that there is lung involvement we will start seeing him regularly. We will keep with the kidney dr in chapel hill. They are one of the best groups in the US (dr Faulk).
Problem is..when you have a group of specialist that have only seen you in the hospital (although they are great) I always get "this is to be expected, its part of the disease". Hopefully having a dr here will help in those situations. I know he is getting the proper treatment, but that doesn't make what's he's going thru any easier.
I honestly think the meds are more of the problem then the disease right now. They did say that the meds have bad side effects but they are better the what the disease can progress to without being treated.
Yesterday was rough, we had a go around over his meds and him eatting. Someone mentioned that they went to a nursing home for a while per their request. I told John that if he didnt eat and take meds that may become an option. I wasn't wanting to be mean or heartless, but I had to get it in his head that he had to do both. I think they may be why he is trying harder today. I went to the bathroom and cried washed my face and went about my day after the conversation. If it worked, then it was worth it.

[vdub]

If you want to talk to the doc alone, arrange it with the nurse. Prior to the appt, ask her to take him to get blood work or urinalysis or something, leaving you alone with the doc.

As far as the disease being "life shortening". Absolutely, but you no one can say if it is weeks, years, or days.... No one knows. Yeah, it's going to take a toll -- it has to. It's a serious disease with serious consequences, but you can't dwell on that. I think all of us have been through that same phase. It's tough, but hang in there -- acceptance of the reality will come along in due time and it gets much easier after that. I can't say for sure, but I think Jack is probably our longest living member. Believe he's had the disease for 25 years or so. Am I right, Jack? So, don't get trapped into reading the articles that say he only has 5-8 years left -- technology and medical science is improving all the time.

The meds have terrible side-effects! They're horrid and it's very difficult to tell if you are sick because of the disease or the drugs. I think everyone on the forum will tell you that. And, the cycle goes up and down in the blink of an eye. A couple days last week weren't too bad, but the past two days have been terrible. Worse yet, I can't nail the good/bad cycle down even by keeping a journal.

Good days will come along and cherish them when they do..... I am reasonably old (60), so I actually have a "bucket list". Unfortunately, I already had to draw through some of the items on my list because I simply can no longer physically do them. So when the good days come along, make the best of them....

[Sangye]

Stephanie, it just breaks my heart to see John and you going through this. As the others have said, Wegs does not shorten the lifespan when it's treated properly and you can stay ahead of complications. People might hear it's incurable and automatically assume it's terminal. Not true! Please do not think this is the best John will be. I believe his docs will help him over these hurdles and he'll begin to turn around.

Looking at your posts, here are the things that leap out at me that I would bring to the doctors' attention:
1) Severe depression

2) Stomach issue
Ctx can cause gastroparesis (http://en.wikipedia.org/wiki/Gastroparesis), which means the stomach is not as active as it should be and the contents sit there too long before emptying. Some of the symptoms are nausea, heartburn, stomach pain and weight loss. If acid is refluxing into the throat it can cause symptoms like easy gagging and difficulty swallowing. Many doctors miss this diagnosis. I know of at least one Weggie who had this for quite awhile but her doctors ignored it. I would really lean on them to explore the reason for his throat and stomach problems. Some tests that would be indicated: gastric motility test, x-ray and/ or CT of head, neck and abdomen. In the meantime, I think he may have to accept a feeding tube. Malnutrition causes depression, so he's locked in a vicious cycle.

3) General, severe decline
It could be caused by the 2 issues above but they need to take you seriously and rule everything out.

[Chris G]

I keep hoping each day that I'll log on, and read your post saying that John has turned a corner.....that he's eating, gaining strength, and feeling better. Hang in there Stephanie. I'll keep waiting for good news from you.

[drz]

I can repeat much of the advice above. I had told you before I requested a skilled nursing home placement after an unsuccessful home trial and between the hospital admissions and skilled nursing home care I was in in-patient care for five months last year. I also requested and received mental health services from a psychiatrist and psychologist and believe this was very helpful to me. I also found it very helpful to talk with the medical social worker when I had questions and concerns about a family member with serious chronic life shortening disease. Another good source of support are the "Caregivers support group" for family members who have a serious illness or condition. I found it important to get outside support to avoid over burdening family and friends and to also find people who really can understand and empathize with your situation.

One of my several return hospital admissions last year was caused by GERD affecting my throat, swallowing, nausea, and voice which they feared was a flare of Wegener's attacking my throat but evaluation indicated it was damage from the acid reflux causing my problems and these symptoms subsided after doubling my Protonix.

We all know the treatment is often dreadful but my guiding words from a friend with Wegener's has been "If you can survive the treatment, things will get better". Just because you look and feel awful doesn't mean you will die. I thought I would die last year and many of my family and others also expected the same, but I survived and am feeling much better now so things can get better. Like Yogi Berra said "It is difficult to predict things, especially the future!"

So Hang in there and hope for the best. Best Wishes to you for better days.

[Stephanie78]

Thanks Drz.
I did speak with the specialist last week in Chapel Hill. One of the options a person has when they are not eatting is a feeding tube. He is against that one. He stated that he would use that as a lost resort. Since John is so young he feels that it would hinder his ability to eat later in life. We did discuss the nursing home option. It is an option that my husband is not open to. Since we have had that conversation concerning the nursing home he has tried harder. He tries to eat, he really does. Someone made a comment on here the other day that totally triggered an "AHA" moment for me. They said that his body is working so hard on the inside to fight off the disease that the "external" things stop (Like talking to me). Made me think...If his body is fighting so hard on the inside that could be a reason it caused him to heave and vomit up what he eats. We go to the intermal medicine doctor today and hopefully we will get somewhere with this. I am going to ask for a referal to a nutritionist so they can guide us on what he needs to eat, what he can eat and etc...
The one thing that ticks me off is that UNC did a "prescription" for Physical Therapy. We called several PT groups in the area and no one will see him UNTIL a dr here in the local area refers him!!! Again hopefully todays visit will get us somewhere on that as well.

Saturday was his last day on Flagyl and Levaquin so hopefully that is what caused some of the pains and sickness he has felt over the past week. I read the side effects and the stomach pain was one. But after reading his preventive med (Mepron) it also has that side effect. I'm praying it was the antibiotics because the Mepron is his "forever" medicine??

[Stephanie78]

Stephanie, it just breaks my heart to see John and you going through this. As the others have said, Wegs does not shorten the lifespan when it's treated properly and you can stay ahead of complications. People might hear it's incurable and automatically assume it's terminal. Not true! Please do not think this is the best John will be. I believe his docs will help him over these hurdles and he'll begin to turn around.

Looking at your posts, here are the things that leap out at me that I would bring to the doctors' attention:
1) Severe depression

2) Stomach issue
Ctx can cause gastroparesis (http://en.wikipedia.org/wiki/Gastroparesis), which means the stomach is not as active as it should be and the contents sit there too long before emptying. Some of the symptoms are nausea, heartburn, stomach pain and weight loss. If acid is refluxing into the throat it can cause symptoms like easy gagging and difficulty swallowing. Many doctors miss this diagnosis. I know of at least one Weggie who had this for quite awhile but her doctors ignored it. I would really lean on them to explore the reason for his throat and stomach problems. Some tests that would be indicated: gastric motility test, x-ray and/ or CT of head, neck and abdomen. In the meantime, I think he may have to accept a feeding tube. Malnutrition causes depression, so he's locked in a vicious cycle.

3) General, severe decline
It could be caused by the 2 issues above but they need to take you seriously and rule everything out.


I am totally going to ask the dr about the stomach issue you stated. That is exactly what John is experiencing. It seems to start later in the afternoon with his stomach cramping horribly. When it happens he will hiccup and burp which makes me believe it has something to do with indigestion. He is on nexium but it doesn't seem to help at all.
Seems like "Soft Foods" are the only things he swallow. Meat makes him gag everytime! And then even when he can swallow the soft foods, his body will heave and cause him to vomit. There is no nasuea at all and he pretty much has no warning before it happens.
With his insurance with work he actually has on his plan where he can see a specialist up to 12 visits for free. I believe we will be looking into that! He definitley needs to talk to someone, and I believe it is hard for him to tell me how he feels in fear of scaring me.

[Stephanie78]

I keep hoping each day that I'll log on, and read your post saying that John has turned a corner.....that he's eating, gaining strength, and feeling better. Hang in there Stephanie. I'll keep waiting for good news from you.

I keep hoping I will one day be able to log on and write that he is doing better! I long for a good day. Actually Saturday was not too bad, but the afternoon and evening was! I keep hoping and praying that the antibiotics that he was on and took the last of on Saturday were what kept him from feeling well... Fingers crossed that's the case!

[gurinbasra]

Hey Stephanie,

Just look at how many of us who have "been there, done that", have responded to your message. This is the hope and dream you should hold on to and we'll all look forward to hearing from John one day too. Just a thought about the stomach issues, I think it's one that can be controlled, back in 2009 I had a really bad relapse and I think it was due to some kind of virus I picked up as I'd just completed my one year of chemo. I remember I was throwing up for a whole week, I remember being on the ambulance stretcher now waiting in ER, and I had just puked again, and I kept thinking, I've never felt so awful with pain and throwing up, that that was the moment I was ready to just take a pill and check out! And yet, I got through it, after three weeks of trying different nausea medication, they gave me one that works on the brain to block the gag reflex, so even though my stomach was having issues, I just couldn't throw up anymore and thus, I started to get my energy back - dehydration and starvation just makes things worse, so be sure to look into making sure that the vomiting is stopped.
I think you're a wonderful, caring, intelligent wife, and from someone who's been that sick and has changed, I really appreciated that my hubby, my rock stayed by my side, brushed aside how I'd changed especially with the high dosage of pred, and now that I'm well, I just love him even more and am able to return all that loving! Take care!

[Sangye]

Stephanie, I'm happy to see your replies. I think you're really well-prepared for those doctor visits this week!

[Stephanie78]

Today appointment accomplished a lot. His internal medicine doctor set him up for physical therapy as well as with a nutrionist. We also spoke with him about johns swallowing/eating issues. He called upstairs to a GI dr and sent us straight up there. He said it looks like he has thrush/yeast infection in the back of mouth so he will go in at 7am to have a endoscopy done to see if that's the problem or if threre is another issue.
The IM dr also put John on a sedated anti depressant drug. He said he was kinda shocked he was not already on one. He said that compared to other cases he thinks johns is pretty severe (funny since the very first dr said it was a mild limited case).
He agreed that chances are the meds are one reason John feels so horrible and even stated that depression can cause a person to not recover.
I made meatless spaghetti tonight hoping he would be able to handle it (even made the pasta mushy) and he still gagged and ended up vomiting it up. Hopefully tomorrows visit will get us on a new path concerning that part.

[NicShaf]

Stephanie,
First, wow, I can't believe someone said that to you about your husbands’ life being "shortened". The thing that I have found about Wegs is that because it is so rare, there isn't very much accurate information out there, and I'm betting that person got some bad info thinking it was fact when they said that. Still, that is incredibly insensitive of them to say…some people should bite their tongues.
When I started Preds and Ctx, it took Preds about 6 weeks to make me start to gain weight…and for the first week or two I was still losingweight, Most of that I think was because I was too depressed to eat or do anything…not a good feeling. And my Ctx took about 6-8 weeks to start making me feel better.
I know this must all be so hard on you. It’s so hard to explain to someone who is healthy how it feels to have your health taken away from you. I’m sure your husband is going through a lot right now that he doesn’t know how to process…I know I didn’t. I had a hard time getting back to everyday things, and my husband had a hard time understanding…he kept telling me that I was going to get better and it was going to be ok…and I kept thinking, “that’s nice, but how do you know?”. And, at the risk of being too honest here, I was jealous of all the healthy people around me. Not that I would EVER wish Wegs on anyone, but that nagging question of “why me” was always lingering around. Getting past the diagnosis was by far the hardest thing I have ever had to do emotionally. And, I didn’t start to get better emotionally until I started feelingbetter physically. If John is still not feeling well, it is probably that much harder to deal with it all.
I think you should ask the doctor some questions, and if you feel more comfortable asking while John isn’t in the room, you should do that. I’m the Weggie, not the spouse of a Weggie but I had questions I didn’t want to ask in front of my husband and my Mom when I was first diagnosed, I totally understand not wanting to upset anyone…but on a side note, I’m willing to bet John has thought of all the questions you’re going to ask…his mind is probably going a mile a minute with all kinds of scenarios that Wegs could bring, it’s hard not to think about it all the time.
I totally understand your anger, I think we’ve all been there. I’m so sorry you and your family have to go through this, Stephanie. But I’m glad that you come onto this forum to vent and ask questions. I hope we can help you both in the healing process.

[Sangye]

Stephanie, I'm happy his doctor sent him to the GI doc and they're doing an endoscopy right away. Glad he got an antidepressant, even though personally I think only psychiatrists should be allowed to prescribe them. It can be tricky to find the right one. But I'm going to keep my fingers crossed that the one he's on will work exactly as it should. Best of luck tomorrow. :smile1:

[pberggren1]

Stephanie, I'm happy his doctor sent him to the GI doc and they're doing an endoscopy right away. Glad he got an antidepressant, even though personally I think only psychiatrists should be allowed to prescribe them. It can be tricky to find the right one. But I'm going to keep my fingers crossed that the one he's on will work exactly as it should. Best of luck tomorrow. :smile1:

"I think" only psychiatrists should be allowed to prescribe them as well.

[Stephanie78]

Not sure how I feel about who prescribes the antidepressant. I asked for something to help him sleep which is the main reason he prescribed it. He will be going to see a psychiatrist as well so I will let them change it if necessary. Really doesn't matter tonight though, the pharmacy didnt have it and refused to transfer it elsewhere and since it was called in there was nothing I could do about it.
He's in a lot of pain tonight with his stomach. Wish I could take it all away.

[Sangye]

Oh man, I wish I could take that pain away, too. Hang in there John!

[drz]

Not sure how I feel about who prescribes the antidepressant. I asked for something to help him sleep which is the main reason he prescribed it. He will be going to see a psychiatrist as well so I will let them change it if necessary. Really doesn't matter tonight though, the pharmacy didnt have it and refused to transfer it elsewhere and since it was called in there was nothing I could do about it.
He's in a lot of pain tonight with his stomach. Wish I could take it all away.

I would be looking for a new pharmacy. I have never heard of one doing that. On the time or two they didn't have it, they call around and borrow it from another pharmacy unless it is a refill and no rush so I can wait a day or two for it.

[vdub]

I would be looking for a new pharmacy.
Definitely agree with drz... That is totally absurd that they wouldn't transfer the script. I have scripts transferred at least 5 times during the course of a winter while we travel. The only one I have trouble with is the testosterone. It can only be transferred between states once.

I would also agree with the depression and I'm glad you are seeing a psychiatrist. Some anti-depressants work faster than others. When I cracked up, they gave me an anti-anxiety drug of some sort. It was supposed to act very quickly. I never got the chance to take it, tho, because I ended up in the psych ward until the steroids wore off.

I'm on celexa now. I think half of the free-world is on celexa or something like it. I think it helps, but who knows. It takes about 6 weeks for celexa to get into your system and begin to work. If something like celexa is prescribed, you need to follow the docs orders very carefully. You can overdose on it and end up with seratonin syndrome.

I'm also on ambien. Sheeeseee, what am I not on? Ambien is great stuff for getting some sleep. If, however, John is having stomach issues and vomiting uncontrolably, then they might hesitate to give him something like that for fear of choking in his sleep. But, I don't know. I'm not a doctor. Stuff to think about, tho. Hope things start looking up for you. There is a light at the end of the tunnel.

[MCC]

Hi Stephanie, I'm so sorry the treatment is not having a good effect straight away, I hope he turns a corner soon.

Re) the life shortening, I asked my doctor and he said it's unlikely I'd sooner than a person without wegeners.

[JanW]

I'm with drz. I would be looking for a new pharmacy.

Reading your posts, Stephanie, it seems like your husband has a severe, not limited, case of the disease (doesn't he have kidney involvement anyway -- that usually takes away the limited label) and I would just try, if I were you, to stay on top of the docs so that they don't brush off everything (not that they are doing this) with a 'well, this is what WG is' or 'this is how the meds always act.' Frankly there is a wide variation and the doctor's goal should be to get the disease into remission and make John as comfortable as possible. I think sometimes when you are very ill -- I saw this with my mobility problems, which were in no way as serious as what John is going through -- there is a tendency to say, "well, perhaps you will always have that pain in the ankle" or "this is the best it's going to get." I pushed on that and pushed on that (and was obviously in a much healthier state to do that -- my disease got under control quickly), and you know what, I got the PT, got the meds increased and my ankle went from horrible pain to slight limp that I can live with.

It's the same thing with my stenosis. There are patients here will similar who have had to accept a trach because of who their doc is -- "it's the best we can do, this is going to make you be able to breath and that's what counts" when there are other options (better, less disfiguring) for those patients.

Yes, we all have to accept a new normal, but it doesn't mean that docs shouldn't try every trick in the book to restore quality of life to as high a standard as possible. I think that when you have a chronic serious conditions (this, cancer, etc.) some docs just don't quite know how to go about that, and think "this is as good as it gets."

Hang in there.