We are home again TAKE 2!

[Stephanie78]

So we are home again! As you all know John was at University of North Carolina Chapel Hill Hospital the week of Memorial Day for a week due to the Weg. He came home, seemed to be doing great when he left the hospital. Had a good 2 days and went back down hill. This time he was doubled over in pain, no appetite (lost 9lbs in a week SERIOUSLY!), turned yellow (Skin and eyes) and couldn't sleep. Honestly I thought KIDNEY FAILURE. (Although his kidneys seemed fine earlier). Oh, and he was short of breath. SO, We were sent back up to Chapel Hill last Monday. They too noticed the yellow. His urine was the color of coke/sweet tea. All blood work showed his bilirubin levels were outragious as well as his liver enzymes. They thought his galbladder was acting up and scheduled the ER for surgery. However the GI dr called that off once he saw the CT. SO.....If you remember correctly he had a reaction to the septra (The first preventive drug they used for the lungs) and they put him on the Dapsone (They said there are only 3 they use). Well, the Dapsone had a very rare never seen in their patients side affect of...wait for it.....LIVER COMPLICATIONS! We should play the lottery, with Johns odds these days we JUST may have some luck! They immediatly took him off of the dapson, gave him multiple antibiotics via IV (He had developed an infection in his stomach) and pushed the Fluids. Within 48 hours the levels were down! Liver looked a lot better! SO, they put him on his last option Mepron. A liquid medicine that is the color of a yellow that is brighter then bright and thicker then thick. OH and before insurance cost $1700/month! Luckily we have A.M.A.Z.I.N.G insurance and only have to pay $55!
Bad news was, they did a study on the urine (Via microscope) and found that there is some kidney activity going on. SO we will go back on July 6th for a renal biopsy and on the 7th he will get his 2nd does of the chemo.
While he was in the hospital he also developed sever acid reflux (Vomiting and Pain) so they put him on Nexium.
So now he is on....

CTX (once a month chemo)
Prednisone (60mg day)
Mepron (Preventive)
Valtrex (For the mouth sores)
Calcium Tablets (2 a day)
Nexium
Colace
Bactraban (For his nose/sinuses)
Ocean Spray (For his nose/Sinuses)
Saline Mist (For nose/sinuses)
Flonase (for nose/sinuses)
Ear Drops (forgot the name)
Levaquin (Antibiotic)
Flagyel (Antibiotic)
Zofran (Nausea)
Oxycodyne (Pain)
Vicadin (Pain)
CVS (Laxitive)
Albuterol Inhaler (For shortness of breath)

and I think thats it???

He was released on Friday night. He seems to be doing better this go around. Still sore, weak and exhausted. His testicles still hurt, so we will be visiting a urologist here in town this week. He will also start Physical Therapy. He lost all his muscle in his arms and legs which makes it hard to walk or stand as well as even open a bottle of water. He will be off work for a long while they say. He's not allowed to drive a car. So the saga continues. Hopefully this is the last of the hospital stays for a while!

Thanks for all the kind words and advice!

[NicShaf]

Stephanie,
I hope he is home for good this time and starts feeling better each day. Hugs to you both!

[Sangye]

Thanks for keeping us updated, Stephanie. You sure are doing a great job of keeping all the details straight--wow. (And I know you're doing it without much sleep, too!)

I lost track--why is he on Levaquin and Flagyl? Those are both very heavy duty drugs and just one of them alone can knock you pretty flat, even without having Wegs or being on all the other drugs. Flagyl is also very hard on the liver. The liver helps to process inflammatory chemicals, so when it's stressed pain is worse. John should make sure to eat a healthy diet to keep from stressing his liver more. If veggies are too hard to digest right now then you can blend them into a drink or eat them like baby food.

I'm glad to hear his docs are getting him into PT. I was in the same kind of shape for a long time and none of my docs thought of that. Pred causes the muscles to waste also, so it's important to do whatever he can to preserve what he has and build up.

[Stephanie78]

I lost track--why is he on Levaquin and Flagyl? Those are both very heavy duty drugs and just one of them alone can knock you pretty flat, even without having Wegs or being on all the other drugs. Flagyl is also very hard on the liver. The liver helps to process inflammatory chemicals, so when it's stressed pain is worse. John should make sure to eat a healthy diet to keep from stressing his liver more. If veggies are too hard to digest right now then you can blend them into a drink or eat them like baby food.

They said that he has an infection in his stomach. They said that the two antibiotics treat different areas which is why he is on two different ones. He will take Levaquin until Sunday once a day and Flagyl until Sunday 3 times a day and then should be done.
He isn't eatting much, however I do make sure he gets the veggies (cooked/steamed) and lots of fruit. He doesn't want to eat because nothing taste good, but I force him. I feel like I have a picky toddler again! I keep reminding him that if he doesn't eat he is hindering his recovery process. I bought him some activia yogurt with hopes that eating that will help his digestive system.
While he was in the hospital he ran a fever of 100.4 but they couldn't figure out what was causing the fever??

And yes...I am very sleep deprived right now. I returned back to work today.

[Sangye]

Oh gosh, a sick husband, little kids and you have an outside job? Hats off to you for staying sane.

Make sure he gets much more veggies than fruit though I bet he wants the reverse. Fruit will cause an overgrowth of yeast. He no doubt has that by now but it can make it much worse.

Activia is okay. He really needs a proper probiotic, though. A good, mid-priced brand is PB-8--available at any health food store. Take 5-7 billion units (1-2 pills) on an empty stomach (ie, 45 mins before eating or 2-3 hrs after eating). If he wants to take it in the middle of the night that's great. He should stay on it indefinitely since he's on antibiotics.

I wonder if his loss of taste is due to nasal congestion. If so, it'll improve as the ctx kicks in.

[Psyborg]

Holy smokes, you guys are going for quite the ride I hope that him being off the Dapsone he'll start recovering. Good luck to you.

[Stephanie78]

He has the metalic taste in his mouth as well as the sores that he developed from all the meds he is on (They said the CTX and Pred causes that?) So when he eats if it doesn't taste weird due to the metalic taste then it burns because of the sores! Only thing he found that he likes is canteloupe. (Good thing it's in season).
Our biggest problem is the "using the bathroom". He is doing the stool softener daily (At night) and doing mirelax twice a day. That is why I bought the activia with hopes that it would help him go.
Any suggestions on helping that area? That is what is causing him the most discomfort right now.
And yes...A sick husband, Two kids (14 and 7) a job (Accountant) and the other everyday things that a mom/wife has. PLUS I have run the kids program at our church and this week is Vacation Bible School. I'm ready to check out for a while!

[delorisdoe]

okay, when i was sick a few weeks ago the metalic taste was strong-i was on two strong doses of two strong antibiotics and yes it makes you not crave food. I was diagnosed with diverticulitis. turns out half of the people you meet have diverticulosis. Everyone has advice. My boss told me that her doctor told her when she had her first bout of it that she shoud eat the cereal fiber 1. she told me so I bought it. all i can say is wow. if you get the flake variety not only is it good but it has 52% of your daily required fiber. I also eat yoptimal or activia-you can even use the yogurt instead of milk. The cereal works so good for me that i am not sure I should eat it everyday. I do notice a HUGE difference on days i dont eat it. I was in grocery stores and comparing the % of fiber in different cereals and the closest I could find was 28%. I realy am shocked at what a difference one bowl of cereal made in my life. He he...i dont like to talk about poop.

I hope he starts to get better so he can ditch some of theses meds. Thank God for insurance.

[Psyborg]

I too had the metallic taste in my mouth with the CTX. Constantly tasted like I was sucking on a piece of metal almost.

[pberggren1]

okay, when i was sick a few weeks ago the metalic taste was strong-i was on two strong doses of two strong antibiotics and yes it makes you not crave food. I was diagnosed with diverticulitis. turns out half of the people you meet have diverticulosis. Everyone has advice. My boss told me that her doctor told her when she had her first bout of it that she shoud eat the cereal fiber 1. she told me so I bought it. all i can say is wow. if you get the flake variety not only is it good but it has 52% of your daily required fiber. I also eat yoptimal or activia-you can even use the yogurt instead of milk. The cereal works so good for me that i am not sure I should eat it everyday. I do notice a HUGE difference on days i dont eat it. I was in grocery stores and comparing the % of fiber in different cereals and the closest I could find was 28%. I realy am shocked at what a difference one bowl of cereal made in my life. He he...i dont like to talk about poop.

I hope he starts to get better so he can ditch some of theses meds. Thank God for insurance.

Everyone poops.