Not sure im strong enough...

[Stephanie78]

I've always thought I was a strong person. I've lost that confidence. I don't understand this disease. I guess I have this magical way of thinking. Ya know, go to the dr, get treatment and BAM you're good as new.
Today John fell in the shower while I was at work. Due to not wanting to scare the kids he laid there until he had the strength to get up. He is so weak I have to help him walk with him stumbling along the way. Tonight I bought him a cheeseburger. He gaged and cried the entire time he ate it. He kept it down! Later I gave him watermelon. It lasted 15 minutes and he threw up. He is continuing to lose weight and now his feet are numb. He is on the verge of tears all the time. I tried tough love by telling him he has to eat or I will take him back to the hospital. Problem is, I think he wants to be there. As long as he is there they are testing everything. Nothing can go wring without appropriate care. At home he has no clue what his body is doing.
I don't know what to do. Please tell me it gets better!!! He is asleep for the first time in 48 hours. He is in the recliner. He's exhausted, but just cant sleep. He can never get comfortable no matter where he is. I hurt for him. Im terrified that if he gets weaker that when we go for the chemo on the 7th he will not do well at all. Plus he has his renal biopsy the day before. How much longer before the good days come??

[watersedge]

Hi Stephanie,
You are going through a tough time, it must be very difficult for you to hold down a job, look after your kids and yourself and try and stay strong for your husband who my heart goes out to. Can the doctors put him on some build up soups or drinks like they use in the hospitals to help if he is losing a lot of weight and doesn't have much of an appetite? Why didn't they do the biopsy on his kidneys before he left the hospital? It must be nice to have him home but I can see your point, he probably feels safer in the hospital until he starts to feel better as you have people on hand all the time keeping an eye on him.
Take care

[chrisTIn@]

I agree with what Watersedge said, and I hope you will be able to discuss this situation with your hubby and the hospital-staff. It seems to me this is too difficult a situation for home-care.
Good luck Stephanie! Hold on, be strong and keep us posted please.

[Jack]

I understand exactly where you are both coming from. My wife is struggling to cope with my condition and I keep having setbacks that mean we don't seem to get a break from it. Since your husband is still in the quite early stages, there is a very good prospect of advancing past this stage, but being at home may not be the best thing for any of you at the moment. Maybe a feeding tube is the answer to the weight loss problem? I struggle with this one so much myself that eating is now a misery and I may have to consider a similar move, but understand any reluctance. I also often wonder if I can cope with any more of this.

[Stephanie78]

The reason he was last in the hospital was due to a reaction to the dapsone (preventive drug for his lungs). It caused inflammation of the liver. He had also developed an infection in his stomach. Due to this they wanted him to recover before doing the biopsy. The ultrasounds show that his kidneys are doing what they are suppose to do, however on this last stay ths nephrology team decided to look at his urine under a microscope and found whatever it is to indicate some involvement. He is already under the exact treatment he would need for his kidneys so they felt that it wasn't an emergency to get it done right then (last week).

Jack, did you ever have problems with swallowing? He has a problem with solid food. It is so bad that like I said before he gags and cried while eatting. He also has an issue with it tasting horribly.

While I understand him feeling safer at the hospital, he is getting the proper treatment out of the hospitals (med wise).
It is very overwhelming. I'm so pissed off at this disease! (As I'm sure you all are too).

[Jack]

In my case, I have difficulty swallowing due to a Pharyngeal Pouch. This is now so bad that even the larger pills are giving me trouble. I also have a sensitive stomach and ongoing problems with diarrhoea or sometimes constipation just to make a change. I hate all the build up drinks, I must have tried them all and they all make me feel sick. I now pretty much exist on tinned rice pudding and any other soft stuff I can find.

[Psyborg]

I am sorry to hear he's still struggling :( It's so scary what people go through with this, and it seems so inconsistent at times.

Has he had any of the treatments for Wegeners yet? CTX/RTX etc? I was lucky in that Prednisone seriously compensated for my symptoms when I started on it, but the actual "fixing" of the flare doesn't really start until the therapy starts. At least in my experience.

[watersedge]

Jack, I can see why you are reluctant to use a feeding tube, my dad hated it, he kept taking it out much to the annoyance of the staff, he had trouble swallowing also, they were afraid he would get aspirational pneumonia if the food went the wrong way, one day they would say o.k. he can eat soft food, the next day he wasn't allowed, it was so frustrating, they said they were more worried about the pneumonia than the weighloss and your thinking well how is he going to be able to stay strong and have a chance of fighting anything without proper nutrition for what he actually could take in the days he was allowed eat would not keep a small kitten going. I have an uncle who uses the peg as a means of feeding, he feeds through the night and then is not constricted to bed during the day, he gets everything he needs and doesn't lose weight. You sound down in yourself Jack, I know it must be very difficult for you at times, hope your feeling better in yourself soon.

[Stephanie78]

Jack, he stays constipated. He takes 2 stool softeners a day (Colace) and he will go 2-3 days with no BM and I will have to give him atleast 2 doses of mirelax (Laxitive) to get him to go. I have stocked up on soft foods such as cottage cheese, yogurt, soups, puddings etc... I also have softer fruits such as cantelope and watermelon. He does have a bad gag reflux while eatting solids. He also has a issue with the taste of food. I try to explain that we are eatting for surival now, not so much pleasure. I try to reassure him that it WILL get better, but I'm not sure I believe myself anymore so why should he?

Psyborg, he is getting treatment. He had his first CTX treatment 3 weeks ago (this Friday). He is also on Mepron for his preventive and 60mg of Prednisone. He is also on a slew of other meds that include things for his sinuses, nose, pain, antibiotics and more. He was hospitalized for over a week at the end of May and was put back in the hospital last week for a week due to him having a reaction to the dapsone (Preventive drug that they replaced with Mepron). He was given pulsate steriods via IV in the hospital which made him feel so much better at the time.

We have been home this time for 5 days.

Jack, I am so sorry you have stuggled for so long. It breaks my heart that anyone would go thru this. I do send you best wishes and hopes that you too run into some good days. You are definitley my hero on this board. Your wisdom goes beyond belief. Thanks!

[Psyborg]

I believe the CTX takes about a month to have a real affect. Hopefully he will start getting some relief from that soon. Perhaps 60mg of Prednisone just isn't sufficient? I know I started out higher than that initially, but my care was all wrong initially too.

[Stephanie78]

They originally had him on 30mg of pred a day. But this was from the dr who treated his with pred alone! That dr realized that he was over his head once his symptoms (that were limited to his sinuses???) Became not being able to walk, bleeding from eyes and ears and more! I know they said that the CTX last for a month in the body. They said that on week 2 it peaks which was last week. I too hope it gets better soon! He is pitiful. It's just hard seeing him like that.

[delorisdoe]

I sent you a long rambling private messag stephanie :)

[LisaMarie]

Stephanie,
I feel for you...My husband is in denial most of the time with my disease so you are so much stronger than you know....you also may need a moment to your self every week to regenerate...see if you can enlist other friends or family...also some home health with offer respite care service...I am so much better the i was 6 months ago ...so there is hope...I am able to start working out alittle to build up my strength I lost...I found a company that makes Protien plus drinks...Bolthouse farms...they have 30 grams of protien per bottle which is 380 calories but it is packed full of vitamins and both whey and soy protien...my favorites are chocolate and Mango...he may be able to tolerate them better and the cover the nasty taste of pred....they are either in the produce or milk and dairy section as they have to be in the frig...Remember we are here for you.....and there is always light at the end of the tunnel no matter how small it looks...Kepp us posted

[Jack]

It is a long time now since my initial treatment, but I seem to remember it starting with IV Cyclophosphamide and then changing quite quickly to a daily oral regimen. I later changed to a pulsed intake of the drug, but it just resulted in repeated relapses and was not for me. 60mg of Pred is quite usual, but I do think that they hold back a bit on the use of CTX these days. Sometimes I think that they are now too cautious and patients certainly don't seem to respond at the rate I experienced. I was lucky enough to move from being a bedridden mess to up and about in a few days, but the drug dosages were a bit scary.

[delorisdoe]

It is a long time now since my initial treatment, but I seem to remember it starting with IV Cyclophosphamide and then changing quite quickly to a daily oral regimen. I later changed to a pulsed intake of the drug, but it just resulted in repeated relapses and was not for me. 60mg of Pred is quite usual, but I do think that they hold back a bit on the use of CTX these days. Sometimes I think that they are now too cautious and patients certainly don't seem to respond at the rate I experienced. I was lucky enough to move from being a bedridden mess to up and about in a few days, but the drug dosages were a bit scary.

same here. scary but effective

[Stephanie78]

When talking with Johns drs. they seem very timid with certian medications. Not that they are not aware of what they are doing (UNC is one of the top places for research for WG) but they are still careful with things. They started him off at .7 of the CTX July he will move to .8 August will be .9 September will be 1 then he will taper back down. They had initially said he would hopefully be on it for just 3 months, however with the kidney involvement coming into play they said he will definitley be on it for the full 6 months. They keep saying that he was treated very quickly (He started having symptoms like allergies about a year ago, but nothing to make him see a dr until Feb) The ENT right away tested him for WG (He knew all about it) and after being mistreated for 2 weeks (By a local rheumy who only would do pred) We went to Chapel Hill and he was treated properly. So they claim that since he was treated quickly in the beginning that he will have a better success rate...Just doesn't seem like it to me!

I'm still pretty young (33) and I'm sure I'm in denial a bit. I refuse for him to see me cry or upset, I have to give him the impression that I am put together, that I can handle it and be strong, that I am not weak....
I also have to do it for the kids. We have been away a lot for the past month. The only time I get to spend time with Kimberlee (7) is when I am getting her ready for bed. Last night she made it into my bed (John was in recliner).
I'm just ready to have a normal life again. Not perfect..Just normal.

[Chris G]

I'm so sorry that things have not turned around for John yet. It breaks my heart to hear what you're both going through. I too think you need to take some time for yourself - to recharge, and to spend some time with your kids. You must be running on fumes. Is there someone who can sit with John for a few hours so that you can get away for a little while?

[Jack]

Although it may feel like you have to be there all the time, you also need to take a step back in order to protect yourself. If you burn out too it won't benefit anyone! During stays in hospital I have always asked my wife to cut right down on visiting because it is too much for her, I would feel happier if she took more notice of what I say because her stress is also mine.

[delorisdoe]

When I was in the hospital a few weeks ago I actualy did not want visitors. It made me feel like I had to entertain and it was akward. I told my husband not to come in the last 2 days. When he was in the hospital a few years ago on 3 seperate occasions he could not handle it if I was not there. His life was not at risk and I was not concerned and stressed about him so it was not hard on me.

[Sangye]

Stephanie, I'm just seeing this thread (my internet was down for 2 days). I'm so sorry. My early days were like John's. It was a living nightmare. Like him, I had all kinds of unexpected complications (and none would have been prevented or detected if I were hospitalized, if that's any consolation). I suspect he is having major reactions to the pred. It can cause severe depression and anxiety. Everything he's been through is enough to cause it, but the pred actually changes your brain chemistry making it all much worse. It affects people differently. I was a wreck on the higher doses during my first few months. And our previous emotional baggage gets really stirred up with something like this.

I suggest a consultation with a therapist and/or a psychiatrist. He may need an antidepressant or mood stabilizer to get him through this initial period. Right now it may seem like one more thing on the To Do list, but it may be as important as his medical care. You're doing an amazing job. I think you need to call in reinforcements.

[maria garcia]

I am so sorry! You are a strong women, dont stop believing it! Hopefully things will get better after the second dosage of Chemo. Try to stay positive.