Update on my dad

[Deb Roy]

He had a great day Monday - ate some jello, drank, and even tried to stand on his own. The doctor's had lowered the air on the chest tube and were even talking about taking the chest tube out by the end of the week! Until yesterday when I got the call that dad had Congestive heart failure. The doctors checked him for blood clots on the lungs (no clots), gave him a echo and his heart valves looked good. They moved him back down to ICU to monitor him and have upped his lasix due to the fact that he has fluid in both lungs, around the heart and his whole body has swelled again. The first thing he said to me was 1 step forward and 2 steps back.
We did hear the cardiologist talking to another doctor while they were looking at his pictures and he said that the his lungs are covered with this disease.
Please keep praying everyone; I understand that there are going to be down days, but never expected this many and so severe.

[NicShaf]

You are in all our thoughts and prayers. I hope you're Dad starts improving soon.

[Sangye]

Deb, I'm so sorry. Your dad must feel devastated. Tell him to hang in there and just focus on getting through each day, or hour. That is how my early days were and I feel great sorrow for anyone else who has to deal with such a pile-on. Hugs to you and keep us informed.

[LisaMarie]

Deb
I have placed your father in our prayer chain...I try to remember that God is bigger and we may never know the reasons for what happens to us but pray it is all part of God Plan...and trust me that is hard for me to write much less believe...but I was told to have the faith of a mustard seed and anything is possible...God Bless and keep us posted

[maria garcia]

Im so sorry! How long has your father had Wegners? Im new here. I will be praying for your dad. Stay strong for him.

[Thakator]

hi Deb - - Just a note to provide a little encouragement. I too developed CHF as the result of Wegs and have had to have my heart stopped and rebooted twice as a consequence; not directly caused by the Wegs but as the result of an open lung biopsy (known for causing A/Fib which then develops into CHF) to confirm the Wegs and then a major flare in the lungs with the attendent severe shock to the heart's rhythem section. Was bad for awhile, but the encouraging news is that it can be subject to fairly rapid improvement once they get all of that fluid out (huge difference) and they get the other stuff under control - - or as close as we ever get to it with Wegs. Mine has improved (not disappeared, mind you, but safely better) and his may very well - - there is room for hope then, even with this very serious add-on to your dad's travails. Best wishes, Ron

[Deb Roy]

thank you everyone for your kind words and encouragement. He had two transfusions, his blood pressure has improved. The doctors had warned us that they were trying not to intubate him again and after the transfusions it looks like they may not have to. The Rhemy has upped his Cytoxin dose. The lesions on his body look much better; the main concern is that all the meds are affecting certain parts of his body, which is mainly his lungs, they are not as concerned about his kidney's and lungs at this time. They are trying to get the fluid that keeps building up in his body out of him.
Maria, my dad was diagnosed with Wegener's 4 weeks ago, he has been in the hospital now for 6 1/2, but he has had symptons since December. We have been told that he has a severe case but he keeps fighting to overcome all the obstacles that are put in his way.
thank you again to everyone this has helped me tremendously; Each and everyone of you are in my prayers. -