Johns Update (8-3)

[Stephanie78]

Wow! That's all I can say about this unwelcomed disease.
Johns Hemoglobin levels have remained "stable". Monday they were 9.1 Yesterday 10.2 which is a HUGE improvment from 6. He has now had 4 Plasma Exchange Treatments. He will have 3 more (Today, Thursday and Friday). He is on oral Cytoxan and will have his 2nd RTX infusion on Friday evening. We have been told that he is the worse case that they have seen at Chapel Hill with Dr Falk. I don't like my husband being the winner of that award!
As to date his damages are.... Lungs, Kidneys (mild), Sinuses, Spleen, Liver and Heart. Yesterday he had a Heart Cathetarization which showed that he has a 80% blockage in a secondary artery (which is not a HUGE issue) and a small embolosim in one of his main arteries. His heart is only pumping at 45% of othe strength they expect it to. They stated that with his age and the fact that was perfectly healthy prior to WG that they will "Assume" it is all due to the disease. Since he has been bleeding into his lungs, having blood transfusions and the plasma exchange they can not do surgery due to him having to be on blood thinner/asprin. They have him on BP medicine and a Heart med that will help regulate the heart until he can do the surgery.
They also think he had a blood clot rupture in his foot (Which is GREAT because it could have just as easily went up to the heart instead of down to the foot). They can't do any amputation to the toes until he recovers from everything else. They will meet and give us a game plan on Friday. Due to possible infection that can occur they will have to decide soon as to how they will treat it.
Johns spleen is dying but he doesn't really have to have the spleen so we are ok with that. They are still stumped on why his stomach is bothering him. Infection? Inflammation? not sure. But it's NOT where the bowels are dying which is great.
So on this visit we are adding a Cardiologist and Wound Specialist to his list of Drs. He is now out of ICU and on the renal floor. He is eatting now and able to walk around the halls (with help).
They have ordered him a walker for home to help him get around when I'm not there. He will have PT at his regular place but also have a Therapist come into our home to help him. They have also diagnosed him with Protein lacked malnutrition, not neccesarly because he has it but so we can get a nutritionist without our insurance denying it again!
They have also written a referal to a physciatrist (sp) for him to see. We are "hoping" he will come home either Saturday evening or Sunday morning. This has definitly been THE WORSE that we have been thru with this ordeal.

[Brooke]

Yes, Wow is right. Sorry that he has to be going through this. I guess on the positive side, the doctors know what is wrong so they can treat him.
Hope he gets better soon
I am Brooke by the way, I'm not sure if I have introduced myself to you or not..

[DEE]

Sorry you have all been on such another rollercoaster ride.Hope things settle down and you get all the treatment you need . DEE x

[Sangye]

Wow, Stephanie. I do believe John's is the worst case of Wegs I've heard of. I also believe that without being at Chapel Hill he probably wouldn't be alive. I'm keeping John and you in my thoughts and prayers.

[Psyborg]

You'll both be in my prayers Stephanie, I hope he starts to see some improvement now that they have some of this tracked down. What a hard road you've been on

[Chris G]

Thanks for the update Stephanie. I've been thinking about you guys. I hope the improvement continues steadily.

[RudiK]

Stephanie: I'm sorry for all the suffering John has to endure and hope that the doctors have found the right combination of medicins to knock the illness into remission and make him feel better. You are in our thoughts and prayers, and may god bestow his blessings on John so that he can lead a healthier life without pain and suffering. Rudi K.

[elephant]

Stephanie, I am so glad he is turning around a little bit. Sounds like he will be there for a while. He is getting good care there. Take care of your self too.

[mishb]

Everyday I look forward to your next updates on here or fb.
John has become a kind of legion in my household with everyone wanting to know how he is going......I hope that doesn't sound rude.

Wow, one step forward and then half a dozen backwards. Surely things can only move forward from now on. (fingers and toes crossed)

Take care Stephanie and as always, we are all sending our thoughts and prayers in your direction from Australia