Phil is in my thoughts and prayers.
Phil is in my thoughts and prayers.
Knowledge is power! Wisdom is using it to make good decisions!
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
wow, Keith. this is an amazing story. if you can, I would like to know more details. becuase this is similar to what is happenning with Phil. the leak continue. how much time you were with the chest tube ? how many chest tubes ? how was your breathing and sats ? how much oxygen you needed ? how did they know that the leak still exist ? can you tell more about the blood patch ? is it risky ? how it works ? every info will be very welcome. sorry for asking so much. thanks a lot.
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
thank you so much, my precious friends, for being here, for your thoughts and prayers and kind words. it means a lot to me and help me so much. I will also let phil know about all the info and support here.
he is still at the ICU. his parents are with him. he is a bit better. pain gone. breathing and sats a bit better. they lower the oxygen from 85% to 60%. he has feeding tube through the nose. they did many tests to try to understand what made him worse in the last days. no results yet. his legs are puffy and he has no energy. they treat him as if he has a flare although they doubt it.
I miss him madly and very scared. but I know that he is very strong, body and soul. please continue to pray. thanks. love you.
p.s. I appologize for not writing at the forum now at other threads. I dont have a free mind even to start reading them. I am sorry. I will try to compensate when things will be more calm.
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
If it is a flare then they are already on to it before the markers show anything.
However if it is a flare his markers should have shown long ago because he has been short of breath for many months.
This is part of the reason you went over to him, so that you could get him to the breathing specialist to teach him some techniques to help.
This is why I hesitate to think that it is caused by the wegs dog.
Either way doesn't really matter. It is still the case that his lungs need help.
We continue to pray and send our love to you both and his family.
Don't worry about the other threads. I am also having difficulties keeping up with them at the moment.
I think I now have 3 pages to look through We will catch up again will things settle down.
Keep Smiling
Michelle
Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS
I only had one chest tube in,and the chest tube was in for ten days,and it was painful.I can only imagine the pain ,and shortness of breath Phil is having.He has been in the hospital at least 7 weeks.God bless him.The machine that the chest tube was hooked up to could tell the hole that caused the pheumothorax was leaking,and that hole was caused by WG.I had been suffering from chills and fever,and was on Cellcept at the time as a maintenance drug for WG.The docs really screwed up again.They thougth I had pneumonia.While I was in the hospital a bronchoscopy was performed,and this proved it was WG.I do not remember how much oxygen I was on,sorry.The blood patch is not risky,but other methods to patch the leak are.I was awake the whole time it was performed.If a lung has collapsed because of a stenosis,a chest tube will probably not work.Phil and you are in my thoughts and prayers,and every one else on the forum.We miss you and Phil.Keith.
"You can tame anything,except the human tongue"
Keith, how did they diagnose the bronchial stenosis? Maybe Alysia can make sure they've checked for it. I wonder why they haven't tried a blood patch. Maybe they can. Markers sometimes lie or don't tell the whole story. I don't know why. But with all of these diseases the bloodwork can show a different picture for different people, for example those of us who are ANCA-negative or 'sero-negative' meaning one has the disease but not the usual blood markers. I think they provide a clue but can't be totally relied upon. Alysia, sorry if have been getting just the Facebook updates and not checked here for quite a while. I will read through now and make site I haven't missed anything just in case I can think of anything else that might help... He is getting great care and I'm sure knowing that his love is on her way soon is helping him stay strong. You are amazing and I'm so glad you're on his side and will soon be by his side. Make sure you're taking care of yourself too, you can only continue to be strong for him if you're getting enough rest and food and caring for yourself too. Bug gentle hugs to both of you.... Prayers too, of course.
Just when the caterpillar thought the world was over, she became a butterfly.
- English proverb.
One more question Keith, why did docs refuse to try to save your collapsed lung? Do you have only one working lung to this day?
Just when the caterpillar thought the world was over, she became a butterfly.
- English proverb.
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