pberggren memorial thread

[Happy Camper]

Phil is in my thoughts and prayers.

[drz]

Phil is in the ICU. He said that he is getting there the best care. the WG is flaring. He got rtx the night b4 this one. He also got solu medrol 1000mg and now pred 80mg. I wonder if the hole in the lung that made it collapsed, was caused by the WG. If anyone knows any info that can help please write it here. He has hard time breathing and almost no energy. I am madly scared and crying a lot. I have a flight on Sep 21. There were not places in flights b4 and I am kind of freaking out being away from him when he is going through this scary fighting. Please pray for him. Thanks for being here. Love u.

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Do you have option of going standby to get a seat from a no show or last minute cancellation? Often air lines have special deals and rates to fly quick in cases of death or serious illness in family. Phil sounds like part of your family to me.

[Alysia]

Do you have option of going standby to get a seat from a no show or last minute cancellation? Often air lines have special deals and rates to fly quick in cases of death or serious illness in family. Phil sounds like part of your family to me.

Thanks drz. I am checking every day to see if there is any cancellation of flight before. we are going to have holidays, so this is why all the flights are full. as for the prices, they have no mercy. any change costs. but I don't care.

[Alysia]

For me my WG flared ahead of the markers showing it! Sadly it was not until the markers had caught up that my Rheumy believed it - by then I needed more treatment than if they had jumped earlier. Maybe it is the same for Phil?

thanks for the info. I will let Phil know about it.

[Alysia]

Alysia,I will briefly tell you what happen to me.My left lung totally collapsed from a left bronchial stenosis in 1988,and the docs refused to try and save the lung.The stenosis was caused by WG.Fast forward to August 2011.This is the short story.I had a pheumothorax in my right lung ,and barely made it to the hospital. A chest tube was inserted,and saved the day.The pheumothorax was caused by WG.There were no markers other than inflammation.The lung inflated,but was leaking , and the chest tube could not be removed.To seal the leak in my right lung the pulmonary doc did a blood patch.Blood was taken from my leg,and injected into the chest tube,and this sealed the leak.There are various methods used to stop the leaking.The blood patch is the most conservative.If the lung or lungs are collapsed because of a stenosis dilation is the best hope.Phil's problem is very complicated.I have been focusing all my prayers on Phil.Thank goodness he has you.Keith.

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]

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.

[mishb]

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.

[Titus3:2]

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.

[LisaT]

Alysia,I will briefly tell you what happen to me.My left lung totally collapsed from a left bronchial stenosis in 1988,and the docs refused to try and save the lung.The stenosis was caused by WG.Fast forward to August 2011.This is the short story.I had a pheumothorax in my right lung ,and barely made it to the hospital. A chest tube was inserted,and saved the day.The pheumothorax was caused by WG.There were no markers other than inflammation.The lung inflated,but was leaking , and the chest tube could not be removed.To seal the leak in my right lung the pulmonary doc did a blood patch.Blood was taken from my leg,and injected into the chest tube,and this sealed the leak.There are various methods used to stop the leaking.The blood patch is the most conservative.If the lung or lungs are collapsed because of a stenosis dilation is the best hope.Phil's problem is very complicated.I have been focusing all my prayers on Phil.Thank goodness he has you.Keith.

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.

[LisaT]

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?