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.