update on my husband...

[Stephanie78]

Oh my gracious.....what an emotional week. Tuesday (as stated in previous post) Johns rheumy in Wilmington NC fired him due to John getting worse and him NOT knowing how to treat him. John is 35 and healthy. He biked and ran for exercise. So to see hi go thru this has been heartbreaking. By the time we arrived in Chapel Hill he had to be rolled in. He could no longer work. Symptoms were...
Can't walk due to stiff and sore joints
Bleeding from eyes, ears and nose
Sore mouth
Swollen sore testicles
Abdominal pain
Couldn't hear
Ruptured ear drums
Could barely whisper
No BM for a week (other then a small one with milk of magnesium

When we arrived in the emergency dept they rushed him into the back. He was listed in critical condition . After several hours, numerous scans, bloodwork, UA and multiple doctors looking at him he was admitted on the renal floor. His kidneys and lungs are still good.
John co tinued to go downhill. He was not alert at all and his body was continuing to do things that puzzled the doctors. Finally after some test came back they realized that he had infection in his bladder, testicles, and ears. He also had a severe case of thrush which is said to be caused from the antibiotics the other ER put him on...
Now lets to back to the other ER. Remember they did a ct and dx him with diverticulitis??? Wrong!!! After doing a ct here they found that WG was taking its toll on johns colon. He did NOT have diverticulitis. Stupid doctors!
On Wednesday I was told by the nurse that John was her sickest patient. He has 5 infectious disease drs, 2 rheumys, a pulmonary dr, renal dr and 2 optometrists. He has been given pred via pill and another steroid via IV. Ciprofloxacin for the infection, a sinus rinse with an ointment in it and tonight started CTX. They had him on the "r" medicine (I can't remember the name) injection but he had a horrible reaction to it and to the septra. ( looked like it was sunburning his face and neck.)
he was given a pneumonia shot today as well. He will be given a drug to replace the septra but that will happen on Monday.
We were told that IF we would have stayed in Wilmington at the rate he was going he would have possibly died.
He is still in bad shape but making improvement. He wears a horrible rash on his lower body and has swollen joints (especially in hands and legs) with rashes covering them. He is extremely anxious.
They say we will be here for a little while longer. But that's fine...
Never experienced such a rollercoaster before.

[Jack]

Oh dear Stephanie, I do hope they get to grips with this soon. At least it now sounds like things are moving in the right direction. The reaction to Septra is well known and can be very serious so I'm glad they picked it up quickly.

Not much help I know, but you both have all of my best wishes,

[DEE]

Sorry things have not been so good. Thinking of you both .DEEx

[mishb]

I'm so glad John is getting the correct help now.
My thoughts and prayers are with you both

[renidrag]

You certainly have gone through a lot, so glad John is starting the road back. Positive thinking.
Dale

[Psyborg]

Holy smokes, glad to hear he's finally getting the correct care. I think a lot of us go through similar bad car initially, but this is one of the worst cases I've seen so far I hope things improve quickly for both of you.

[BrianR]

Marta and I are thinking of you Stephanie. I do not know what else to say as I am dumbstruck. Stay strong and get through this. Tell your husband he has a lot of people out there sending positive energy.

[Sangye]

Oh my gosh, Stephanie I'm so sorry. Thank goodness he's finally getting the care he needs. I hope you'll be okay with me using what has happened to him as to make a point for other newly-diagnosed.I know you did the best you could and took action getting to Wegs specialists as soon as things started to go downhill.

I'm sure we're all stunned reading the above update. For newly-diagnosed, this is why you need to get a Wegs specialist involved asap even if you're currently happy with your care and/or your involvement is "mild." Wegs can change on a dime. When Stephanie first posted about her newly-diagnosed husband he only had a stuffy nose. This was her first post: Any Advice Welcomed! Just Diagnosed!

Hard to believe that was less than a month ago.

[Stephanie78]

Sangye, please feel free to use my story as an example.
Never did I imagine WG could progress so rapidly.

John did great with the CTX. He will get one treatment per month for 6 months OR until bloodwork and systems show he no longer needs it. The steroids are making him very anxious at nights. They are giving him one that he will have via IV for 3 days. He is also extremely emotional in the evenings which is understandable with all he's been thru and all the meds in his body.

Jack, I've never seen a reaction like that he had with septra. They said he was lucky to be on the steroid or it could have been worse. He's having reactions to several meds which is why they are keeping him longer. They won't let him leave until all meds agree perfectly.

Has anyone had the pleasure ofspodting the great beighy red pin head size spots rash from WG? Johns covers

from his upper thighs to his feet. Not bothersome or anything just there...if so, does it go away?

He seems to be doing great today. Tired and weak still but he's alive! This experience has definitely taught me to go with my gut. Just because they are a dr does not mean they are right.

Thanks for the kind words!

[BrianR]

Sangye, please feel free to use my story as an example.
Never did I imagine WG could progress so rapidly.

John did great with the CTX. He will get one treatment per month for 6 months OR until bloodwork and systems show he no longer needs it. The steroids are making him very anxious at nights. They are giving him one that he will have via IV for 3 days. He is also extremely emotional in the evenings which is understandable with all he's been thru and all the meds in his body.

Jack, I've never seen a reaction like that he had with septra. They said he was lucky to be on the steroid or it could have been worse. He's having reactions to several meds which is why they are keeping him longer. They won't let him leave until all meds agree perfectly.

Has anyone had the pleasure ofspodting the great beighy red pin head size spots rash from WG? Johns covers

from his upper thighs to his feet. Not bothersome or anything just there...if so, does it go away?

He seems to be doing great today. Tired and weak still but he's alive! This experience has definitely taught me to go with my gut. Just because they are a dr does not mean they are right.

Thanks for the kind words!

Great to hear things are improving!! I am not being a downer when I say there will be more ups and downs to come, just being realistic. With the proper treatment he will steadily improve even with the occassional set back. And...it is understanable that he is emotional in the evenings given what he (and you and your family) are going through. Remember that the pred can really, really accentute those emotions. Pred, especially at high doses, can make one very moody in both directions, high and low. Be prepared for that and know that all will settle down with time and proper treatment. Others on the forum have experience with this and know much more than I.

One thing I was told by so many people when Marta was first diagnosed was that I needed to stay strong and to take care of myself. This is easier said than done but it is very important for you AND yuor family. You have a way to go but you'll get there.

Keep us all informed please.