John's Follow-up appointments!

[Stephanie78]

So, John has come a long ways in the past 3 weeks since being in ICU. Last Wednesday he had an appointment with his Cardiologist. Really no good new NOR bad news. His BP was still on the high side. During the appointment we realized (easy to do with so many meds) that we had messed up on his daily dosage of one of the BP meds. Instead of taking it twice a day, he was taking it once a day. We corrected the mistake and since then his BP has been pretty decent. Yesterday it was 143/80.
Yesterday he had appointments with the Wound Doctor/Vasculitis Surgeon as well as his neuphrologist (Dr. Falk) The Wound Dr said that he feels Johns foot/toes will heal on their own. They put him in a boot to keep pressure off of the toes to help with the healing process and now has us putting a ointment on it and dressing it daily. GOOD NEWS THERE!
His other appointment went pretty well. According to the Urine test (under the microscope) it looked like the kidneys were doing better. John is still very weak due to the disease/medicine mixture. They decided to start tapering him off of the prednisone (Slowly) and the oral Cytoxan. They said the RTX should take effect in the next month. Dr Falk said that he feels John will possibly reach remission by Spring. He has high hopes... IF he does NOT get an infection during the winter/sick season. He made it clear that we have to be rude and not let anyone in our house that so much as has a stuffy nose. He said that an infection would be really bad and then said "I refuse to let you die under my watch" (which explained how serious an infection would/could be). His man prescription....FOOD! He told John he has to eat more...Like a moose...Graze ALL DAY. So we felt like it was a good appointment. We went to Olive Garden on the way home and celebrated (Just the two of us which is basically unheard of when you have kids). This morning I wake up and have an email from his Dr stating that they received his blood test results and that the kidneys actually look worse then they did when he was in the hospital (Function) UGH!!!! Twas a short lived celebration. They changed his BP medicine due to tha one he was on (COZAAR) can actually damage the kidneys if taken while malnurished/dehydrated. We are still going to celebrate!
We are planning a trip for next April/May. Dr Falk instructed him to do so. Anywhere he wants. Start planning and we are NOT to cancel. He said "YOU WILL GO ON THIS TRIP AND YOU WILL ENJOY IT". So looking forward to that day!!!
He is losing his hair, was told it was due to the cytoxan (Oral) his skin is getting really thin (Which is due to the prednisone...He has been on it since April). They say he has been on it way too long. He did say that although Prednisone is a good thing for you with WG that it is HORRIBLE getting off of it. He said the soreness will come back for only a few days.
Maybe we are getting back to a new normal once again! So ready for it. Until then my family will be hiding out in our germ free, clorox smelling, lysol sprayed, mask wearing, home for the next 5 months watching movies, playing games and getting John fat!

[renidrag]

So happy for you guys. What a time you have had. Best to all
Dale

[Psyborg]

Thanks for the update Stephanie, I'd been wondering how John was doing. I hope things continue to improve and the kidney issues get straightened around.

[pberggren1]

Thanks for the update Steph.

John should not have too much trouble puting on some weight while on pred. So please just feed him the good foods: lots of fresh veggies. Stay away from processed foods and refined carbs and sugars.

And as far as cleaning in the house goes I would not use Clorox or Lysol. Those are harsh chemicals that can actually make you sick. I just use vinegar and water to clean most things and sometimes mix in some lemon juice and baking soda.

[elephant]

Glad John is doing good. Do you know what his creatinine is? ( kidney function blood test).

[Sangye]

That's wonderful, Stephanie. I really appreciate your detailed updates.

I second what Phil said about Clorox and Lysol. Bleach and pine oil are both bad lung irritants. This is a good time to switch over to natural cleansers. The ones Phil recommended are great or you can find some already prepared in stores.

I also suggest getting HEPA air purifiers for your home. It's important to have very clean air, especially with winter coming up. Get a "True HEPA" and make sure it's the right size for a room.

[pberggren1]

I forgot about the HEPA air purifiers as well. Ditto to what Sangye says.

[mishb]

That all sounds like excellent news Stephanie.
More little steps forward this time for John instead of backwards steps.
Very soon it will be giant leaps...straight ahead.

My husband is a cleaner and he agrees with Phil and Sangye

[Stephanie78]

So the vinager mixture with water is sufficient enough to clean even bathrooms? Being from the south I was raised with Clorox and Lysol. I have recently bought some 7th generation things that are "green" cleaners?!?
Give me all of your ideas. I would love to try them!

[mishb]

My husband said, vinegar, water, bicarb soda, lemon juice, vanilla essence. He uses all of these and more.
He said to google what to use each for and how to mix them. Try googling - cleaning with vinegar and so on

Sorry, I'm not very good at the cleaning side of things .... have left it to him for the past 20 years or so.