pberggren memorial thread

[Alysia]

*Hi all Andrew here - just hijacking Alysia's post for a second so I can add some context :) This thread is continued from this one: http://www.wegeners-granulomatosis.com/forum/weggie-s-stories/889-update-pberggren-267.html




Come on Alysia, time to get him out of there and fatten him up :tongue1::thumbsup:

trust me, I try to seduce him as much as I can :wink1:

[pberggren1]

Thanks so much everyone for your prayers and words of encouragement.

Looks like I will be in here for the long haul. That could be another month or til Spring, who knows for sure. At least I am in the best place possible. When God decides it is time to go home then I will go home.

[annekat]

I'm so sorry to hear you won't be out soon. :sad: That's a long time to spend in a hospital room. I hope you are able to get out and about a little bit. My best wishes and prayers for you and Alysia.

[Bing505z]

I see it's a stormy time for you Phil, keep your chin up. You're in my prayers.

[me2]

I'm sorry to hear you are being held over Phil. If it helps at all I have actual fond memories of some of my hospital stays. Even in the midst of pain and fear I was able to find moments that I still remember fondly.
I know it sounds a little whacky. One example was when I was extremely ill and could not get out of bed and walk for a very long time. I remember vividly the first time I was able to get up and make my way to the shower and take a shower. Just a simple shower. It was pure heaven.
I hope you find as much to enjoy as you can in your time there- and then get the hell out. You don't belong there. We all want you to go home.

[whatthewhat]

Phil, I join in praying for you.

[chrisTIn@]

...could be another month or til Spring, who knows for sure.

I hope it's just a few weeks.
Best wishes for a speedy recovery!

[RCOSSIO]

This is sort of Wegs related but not due to disease activity at the moment. Wegs did major damage to the lungs and in turn I got M. Abscessus, stenosis and bronchiectasis. So with all 4 of these it led to the pneomothorax. Tall skinny people are more prone to lung collapse.

Phil...dude hoping for a speedy recovery and once you are back on your feet my friend you WILL need to come down to South Florida. I will definitely feed you rice, beans, pork, yucca and bread and top it off with flan!

[Thinker]

I'm sorry to hear you may be in the hospital longer. At least you have good company! Keeping you in my positive thoughts and prayers that you get to leave sooner than later.

[Wegetarian]

Are you feeling better at all? I hope you are not in a lot of pain, but by the looks of the pics you posted I'm sure you must be at quite a discomfort :(

[jvilner]

Best wishes for a very speedy recovery!!

[Alysia]

*Hi all Andrew here - just hijacking Alysia's post for a second so I can add some context :) This thread is continued from this one: http://www.wegeners-granulomatosis.com/forum/weggie-s-stories/889-update-pberggren-267.html



I love the original thread..... page 265 or so.... it was cool ....
I wonder, andrew, if the new thread can send notifications for friends that wrote on the original thread ?

[Alysia]

we had couple of dramatic and scary days. I will try to copy to here the updates from Phil's page on face book and to write down what we had.....

[Alysia]

Phil :love: 20 August.

https://fbcdn-sphotos-g-a.akamaihd.net/hphotos-ak-xpa1/v/t1.0-9/10406628_1522552471290231_3510265248960809725_n.jp g?oh=876ec9a439910aee30cac12b9b3e0a79&oe=5472AE97&__gda__=1416090109_4ba205362c111b52fdba6504092aa3d a

[Alysia]

so, on wednesday after noon Phil started to feel pains in the chest. I was worried maybe the lung is down again and try to tell the nurse to call the docs. I tried and I tried but the nurse in charge didn't listen :predrage:

thursday, first thing in the morning I catch his doc and asked him to come and see Phil. he ordered and cxr which shows that the lung was down :crying:
late on Thursday evening, arrived doc who opened the valve of the chest tube, found in it somthing that blocked it, flushed it and we all hoped for better.
next morning, the cxr showed that the lung was up again :thumbup:

to be continued.....
with Phil you should always hold your breath :wink1::love:

[Alysia]

Friday norning we had a meeting with a doc from the transplant team.
this is what Phil wrote about it on his facebook page:




I've decided to go ahead with a double lung transplant. The lung transplant doc stopped by to tell me about the whole process. Next week begins a battery of tests to choke horse. On Tuesday they draw 40 vials of blood for the blood work. I will have to live in Edmonton for 6 weeks prior to the transplant as part of the workup. There I will do physio therapy in the mornings to get into shape and see the docs and other people in afternoons. This is about as a high of risk surgery one can embark on.

Once I am done with the 6 weeks in Edmonton then I am on the transplant list. It is like being pregnant and waiting with your bags packed. A plane would be sent to Swift once I go the call. I would always have to be ready for the call at all times.

The surgery itself is very intrusive and intensive. My heart and lungs go on bypass machines. It takes about 10 hours. At least one week in ICU afterwards and usually 3 to 5 days on ventilator. Then another 3 to 5 weeks on average in a ward recovering. Total recovery takes about a year.

I will have no immune system once this is done. They will shut it down completely. I will be on steroids for the rest of my life and other immuno suppressive meds like Imuran and Cyclosporine and about another 10 to 15 meds for as long as I'm alive.

After I get out of hospital after the surgery I stay in Edmonton for another 3 months for more physio therapy and follow up with docs, etc.

Then after that I will have at least monthly blood work with at least 6 visits a year to the doc in either Saskatoon or Calgary or Edmonton.

I will need a support person with me the whole times I will be in Edmonton. It is not an easy thing to go through, especially post surgery.

The lung doc today figured I was status 2, meaning I was the sickest of the sick to get a lung transplant.

Average wait time on the list is a year. One in ten die waiting for lungs.

The most common complications are infections, acute rejection and blood clots.

Given my young age he figures I should get another 10 years out of new lungs, possibly more.

Most of the donor lungs come from car accidents and strokes.

I will post again once I learn more. But first the pneumothorax must be resolved.

[Alysia]

continue:

Saturday: Phil started to feel sever short of breath. this time the nurse in charge was very caring and he called the docs. the cxr showed that the lung collpased again. so late at night he went for another chest tube. number 6. this morning the cxr showed that the lung is back up. thanks God.
please continue to pray. thanks for being with us.

[andrew]

I love the original thread..... page 265 or so.... it was cool ....
I wonder, andrew, if the new thread can send notifications for friends that wrote on the original thread ?

Nope they won't but they will have been notified of my last post with the link in it :)

[Michael Bell]

you are in my prayers, and I hope to hear some good news soon.
Mike

[chrisTIn@]

continue:

Saturday: Phil started to feel sever short of breath. this time the nurse in charge was very caring and he called the docs. the cxr showed that the lung collpased again. so late at night he went for another chest tube. number 6. this morning the cxr showed that the lung is back up. thanks God.
please continue to pray. thanks for being with us.

Good to hear that the lung is back up. :thumbsup:
You sure went through a lot, lately.

How is Phil's breathing now?

[RudiK]

I'm so sorry about all the problems you have to endure. I hope the lung transplant will work and you will feel better and be with us for a long time. You are in our thoughts and prayers.

[Alysia]

I will have to go back to Israel tomorrow :crying: and Phil is still here in the hospital.....

Sweetie,
You are my oxygen, giving me life,
My chest tube, expending my soul,
My PCA, taking my pains away,
My pick-line, going straight to my heart,
And It is so painful, unthinkable, unbearable,
To leave you here and go away tomorrow,
I wish I could do otherwise…
I am so sorry.
We are in the hands of God
He will bring me back to you.
soon. I hope.

[Psyborg]

I will have to go back to Israel tomorrow :crying: and Phil is still here in the hospital.....

Sweetie,
You are my oxygen, giving me life,
My chest tube, expending my soul,
My PCA, taking my pains away,
My pick-line, going straight to my heart,
And It is so painful, unthinkable, unbearable,
To leave you here and go away tomorrow,
I wish I could do otherwise…
I am so sorry.
We are in the hands of God
He will bring me back to you.
soon. I hope.

I'm praying for you and Phil both.
Numbers 6:24-26New King James Version (NKJV)24 “The Lord bless you and keep you;
25 The Lord make His face shine upon you,
And be gracious to you;
26 The Lord lift up His countenance upon you,
And give you peace.”’

[rebekah]

Alysia, thanks for keeping all of us updated on Phil. I am so sorry to hear all he is having to endure, but he certainly has been lucky to have you spend time with him by his side taking care of him. Sorry to hear he needs a lung transplant, but I hope that goes well and he has a fast recovery. You and Phil will be in my thoughts and prayers.

[annekat]

All best wishes and prayers from me, too, for both of you, as I've already indicated on Facebook. :wub:

[Alysia]

Update: lung collapsed again. Phil's sats are too low so he is now on 8 oxygen which is more then twice then the other days here. They changed the sucction machines and flushed the lines. Now we are waiting for another cxr. Please pray. P.s. I am going to call air canada to delay my flight.

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[annekat]

Thanks, Alysia, and so sorry for the bad news. Praying.

[Alysia]

I'm praying for you and Phil both.
Numbers 6:24-26New King James Version (NKJV)24 “The Lord bless you and keep you;
25 The Lord make His face shine upon you,
And be gracious to you;
26 The Lord lift up His countenance upon you,
And give you peace.”’

Thank you and all the others for your support. It means a lot. Love u.

[whatthewhat]

You both are surrounded by all our love and support.

[kieshara]

@Alysia

my mom mentioned something to me... she said if Phil get a lung transplant... wont the wegeners attack the new lungs as well??

[Alysia]

Update: I am still here. I delayed my flight. Yesterday evening Phil had fever and puffy legs. They started antibiotics. Fever is gone this morning but the lung is down. So in an hour from now my beautiful super hero is going for another chest tube. Number 7. Please pray. Thanks for being with us. Love u.

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[Debbie C]

Hope lucky # 7 helps. And glad to hear the fever is gone amd its is nice that you are still there with him,I'm sure he feels better having someone there with all that's going on. Remember ,Alysia you need to take care of yourself as well.Don't get too run down and make yourself sick.:hug2:

[Michael Bell]

my prayers and thoughts are with you both. I hope the power of all the love that people on this thread feel for you both makes a positive difference to you. And yes look after yourself Alysia.
Mike

[Psyborg]

Any updates Phil or Alysia?

[pberggren1]

I think the pnuemonia is getting better with the antibiotics, feeling a bit better this morning.

Talked with another lung transplant doc today as well. All departments are taking good care of me.

The could easily attack the new lungs for sure. There have only been 3 Weggies with lung transplants in Albert, most of BC and Sask. So I wish I would stop winning these lotto jackpots..........:wink1:

Alysia leaves in the morning..........:sad:

[Pete]

Sounds like you may be turning the corner to recovery. Hope all continues to go well.

Safe travels and time at home for Alysia.

[rif]

[QUOTE=pberggren1;89152]I think the pnuemonia is getting better with the antibiotics, feeling a bit better this morning.

Best news in a long time Phil. Sorry to hear that Alysia has to go home please wish her a safe journey.

Rif

[makabe]

I have been away from this forum for a while and have just gotten caught up on all that you have been through, Phil. I will keep you in prayer. Your last comment from today gave me a chuckle: yes, you need to stop "winning" these icky lotteries. I am sorry Alysia has to go home. Praying for you both and will continue to do so.

[Alysia]

So I wish I would stop winning these lotto jackpots..........:wink1:

Alysia leaves in the morning..........:sad:

I win you, sweetie :love: I have lots of tears and fears anout flying tomorow :crying:

[vdub]

Good luck to both of you!

Alysia, let us know when you are safely back home.

Phil, which hospital are you in?

[Alysia]

Good luck to both of you!

Alysia, let us know when you are safely back home.

Phil, which hospital are you in?

Hi. thanks for caring. there is a cease fire with the Hamas, so no shooting at the airport. I am safe home.
but my heart remain in calgary, in foothills medical center, main building, floor 6, unit 61, room 625 B. with my sweetie....
I was and still crying :crying: missing you like crazy, sweetie :love:

here is a link for a song that Phil sang to me. its on facebook: https://www.facebook.com/video.php?v=1529717977240347&set=vb.100006064779972&type=2&theater

[Alysia]

and an update if I still may: Phil wrote today that he went for a walk. makes me happy. getting better !

[rif]

Take care of yourself Alysia and stay safe.

Rif

[annekat]

Alysia, I think things can work out with you and Phil, somehow; it may take some time, but where there is a will there is a way. I think about both of you a lot. And I'm so glad to hear that he was able to take a walk! I want to see you both walking together someday.

[windchime]

Glad you are back safely Alysia. Wish you could still be with Phil, but things will work out in God's time. In the meantime hugs to both of you. :love: :hug1:

[vdub]

Its been a week since last hearing any news. Are things going well? Phil still walking a bit? Does Phil have any idea when he might get to go home?

[rif]

Have been thinking the very same vdub. They say no news is good news.

Rif

[Alysia]

my update is based on my talks with Phil and lately with his nurse.
the night before Phil had pains in his chest at the left side. later it turned out in the cxr that the left lung collapsed too :crying:
this morning (his morning, my afternoon) my sweetie didnt message me like he does every morning, and knowing from his night (my morning) that the left lung also collapsed I was madly worried. :crying: I called the nurse and she told me that he is going today for another chest tube for the left lung. it will be chest tube number 8. he was sleeping when she talked with me and she said that he had tough night. his sats are low (he told me that they were even down to 60's) so they raised his oxygen to 85 % which is huge. before that he was on 40% which is similar to about 10, which is also very high.
I am checking if I can be back to him. I will know at the end of the week. it is so scary and heart breaking and unbearble to be away from him when he is going through all this. I want to be there and to hold him for real. I just can't stop crying :crying:
please pray for him as strong as you can. thanks for being here. love you.

[annekat]

Thanks, Alysia. I'm so sorry to hear this and will continue praying. And please remember to take care of yourself, too. We don't want to hear that you are flaring.

[JeanMarie]

Alysia,
Continued prayers for Phil--thank you for taking the time to keep us up to date. I know you must be overwhelmed right now. Prayers for you as well!

[mishb]

I can't wait to hear your updates but at the same time, I don't want to see them :unsure:

My heart goes out to you and my prayers to Phil.

As I said to you privately, I just wish that there was more that I can do - from Australia :crying:

Much love to you both

[Jayne 14]

Thinking & praying for you both
Thanks for the update heartbreaking as it is
Stay strong
Xxxx


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[RudiK]

Thanks for the update Alysia, I hope and pray that Phil will get better. Good luck to both of you.

[Psyborg]

You two are in my prayers.

[drz]

Sorry to hear the distressing news. I think though it is harder on the concerned and caring family to watch helplessly than to be the patient so try take care of yourself too.


my update is based on my talks with Phil and lately with his nurse.
the night before Phil had pains in his chest at the left side. later it turned out in the cxr that the left lung collapsed too :crying:
this morning (his morning, my afternoon) my sweetie didnt message me like he does every morning, and knowing from his night (my morning) that the left lung also collapsed I was madly worried. :crying: I called the nurse and she told me that he is going today for another chest tube for the left lung. it will be chest tube number 8. he was sleeping when she talked with me and she said that he had tough night. his sats are low (he told me that they were even down to 60's) so they raised his oxygen to 85 % which is huge. before that he was on 40% which is similar to about 10, which is also very high.
I am checking if I can be back to him. I will know at the end of the week. it is so scary and heart breaking and unbearble to be away from him when he is going through all this. I want to be there and to hold him for real. I just can't stop crying :crying:
please pray for him as strong as you can. thanks for being here. love you.

[jvilner]

Hoping Phil gets better and that you take care of yourself as well!!

[chrisTIn@]

...she told me that he is going today for another chest tube for the left lung. it will be chest tube number 8...

...I am checking if I can be back to him. I will know at the end of the week...

Were they able to succesfully insert chest tube nr eight? I sure hope so, and hope the saturation will go up again, so Phil won't need all those oxygen and will be able to write a message here.
Good luck Alysia, with your attempt to fly back again, but as more people have said here already: take care of yourself too! Try to get enough rest too!

You both are in my thoughts. Many greetings from the Netherlands.

[Alysia]

thank you for your prayers and support and caring and love.
yesterday was very scary. they insert the chest tube but before, Phil felt so bad, like he is going to die :crying: he said after, that the docs saved his life. today I had short talk with him. the left lung is not up yet :crying: the docs consulted with his WG doc and they suspect that the wg is active :crying: so he will start pred and rtx and antibiotics. I hope all these can help.
please continue to pray. thanks for being with us. I love you.
p.s. I am ok. I just did my labs and they look good. I wish my love to Phil could have heal him, like his love to me is healing me.

[annekat]

Thanks, Alysia! I'm so glad, even though there are still issues, that Phil is feeling better and more like someone who is going to keep on living! You are right, he is a fighter. I'm also happy that your labs look good. Love to both of you!

[Jaha]

So happy to hear things are looking up a bit. I'm glad that they finally had wegs specialists check him out and maybe their txs, will bring him back to a more stable state. Please take care of yourself and keep an eye on your bodies messages. Prayers to you both and may everything continue to improve.

[Alysia]

Phil is moving to the ICU because his breathing is worse. I have tickets to fly to him at Sep 21. I am so scared. I can't stop crying. Please pray. Thanks.

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[Alysia]

Phil's mother just talked to the doc. No ICU. Yet ??? But ICU team are also taking care of him. His breathing is worse. Please pray. Thanks for being here.

[Thinker]

Keeping both of you in my thoughts and prayers. It sounds like he has a very good team of doctors and they are keeping a close watch on him. Hopefully the treatments and medications will take effect soon and he can start to recover.

[annekat]

Yes, we are here, and Phil is on everyone's mind with prayers and loving and healing thoughts. If he goes to the ICU, don't worry, they will take good care of him. Big hugs to you and gentle ones to Phil.

[Jayne 14]

Praying for you both xx


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[Alysia]

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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[Alysia]

I just talk with his nurse at the ICU. The markers don't show that its WG. But are the markers what count ? They are trying to find out what makes his breathing worse. If anyone has any idea please write here. Thanks.

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[pwc51]

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?

[Titus3:2]

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.

[BookNut]

Alysia, Thank God Phil has you and his family fighting for him. I am praying that he will soon beat all these problems with his indomitable will and you at his side...his warrior love!

[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 :sad: 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?

[LisaT]

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.

No need to apologize, Alysia! Everyone knows you are in crisis mode and we're all thinking of both you and Phil all the time.. Nobody expects you to keep up with everything else right now and we know how to reach you if we need you. I feel somewhat powerless and really wish I could do more or say more or help more... So please, if there is anything you or Phil need, anything my Calgary family can do to help, please let me know.... If you want to talk I'm here any time, any day. If this teacher's strike ever ends maybe I could even come see you and Phil while you're in Calgary... Just say the word, whatever you need or might help I will try to do. I know the number one thing is prayers, and I think everyone on here is doing our own version of that every day. Is there a priest or hospital chaplain going to see Phil?

Huge hugs and chicken soup xoxoxo.

[LisaT]

I just had another thought. Are Phil's Dr's consulting with any of the major Wegs specialists? Even if they are WG specialists themselves, there are so many different presentations and complications it is always helpful to check in with others. If they haven't already, perhaps they could talk to one of the vasculitis foundation docs, or from everything I know thus far I would ask them to call dr. Robert Rothwell in new Westminster bc. He is the one who has saved the lives of a number of those in the Bc support group. He's very experienced and unbelievably thorough. It would be worth a phone call and consultation with him or someone like him just in case they know of or think of another or idea or question or angle that might help. I'm not allowed to call him because he may be an expert witness in my insurance case. Maybe Phil's family or doctors could? Or the vf in Toronto...

[Titus3:2]

Lisa,markers and lab work can be meaningless.My left lung collapsed from a stenosis in the left bronchus for good in 1988.This stenosis could have easily been seen by an ENT doc in the clinic using a bronchoscope.Even though I was begging for help ,no one looked.By the time pulmonary did a bronchoscopy it was too late,and this is when the WG diagnosis was finally made in the hospital.At that time laser surgery was the surgery of choice to deal with this type of stenosis.The pulmonary doc in charge believed it was to risky because the stenosis was close to my heart.I begged him to do it anyway,but to no avail.When I had the pheumothorax in 2011, I only had one lung.A person can do quite well with one lung as long as it stays healthy. Phil's docs know a lot more than I do.Surely they will do the right thing.Lisa your absence has been missed.

[Psyborg]

Let Phil know we are pulling for him Alysia. And you of course as well.

[jvilner]

Alysia stay strong! Phil feels your love from across the other side of the world. Sending prayers to Phil and you!!

[Allisonquast]

Colin and I also send our prayers to Phil and Alysia! I do hope a vasculitis specialist is being consulted too but he is in great medical care, the foothills is world renowned. They will do all they can!
We are close too so if there is anything we can do we will try to help you Alysia in whatever way we can. Hugs!

[Alysia]

Thank you, dear friends from the bottom of my heart, for your prayers and thoughts nd precious info. I love you. Phil in not getting beter. Still in ICU. The docs can't tell yet if the meds will work. I am so scared. Freaking out. Yestrday Phil told me that he is going to die. I was crying madly. Then Lisa T helped me to connect with air canada. Thanks so much Lisa. I found an earlier flight. I am sitting now at the airport. Flight to Toronto will be in about an hour from now. Please pray as strong as you can for our beautiful Batman. Thank you for being with us. God bless you.

Sent from my GT-I9100T using Tapatalk

[Alysia]

:crying::crying::crying::crying::crying:Just to upate that he also has infections of yeast and ecoli

[Debbie C]

Alysia, Phil will start feeling better the moment he sees you. My prayers are with both of you. Safe travels:hug2:

[annekat]

Godspeed! Bless you both.

[kieshara]

:crying::crying::crying::crying::crying:Just to upate that he also has infections of yeast and ecoli

what does that mean if i may ask?

[BookNut]

Oh Alysia and Phil! Keep fighting this newest downturn. You are both so strong. God bless you both! I am thinking of you all day, every day.

[Hammy8241]

:crying::crying::crying::crying::crying:Just to upate that he also has infections of yeast and ecoli

Gosh that boy is greedy :) One problem not enough ehh? Mind you, if I got you to come and hold my hand...:)

Give Phil my regards Alysia and bring that smile back to his face and take care of yourself too. xx

[jvilner]

Wishing you both only the very best of health and happiness. Safe travels Alysia and your presence will be the best medicine for Phil.

[Sangye]

So I go away for awhile and the whole cart gets upturned. Phil, what the heck?? Unless there's a pool table in the ICU you have no business being there. Get yourself together. Find the fight in you. To quote the Dalai Lama (wrong religion for you, but still :wink1:) "Never give up. No matter what is going on, never give up." You got that? Too many people love you and need you in this world. You've got a gal flying from Israel for Pete's sake. I mean dude, come on.

[mishb]

So I go away for awhile and the whole cart gets upturned. Phil, what the heck?? Unless there's a pool table in the ICU you have no business being there. Get yourself together. Find the fight in you. To quote the Dalai Lama (wrong religion for you, but still :wink1:) "Never give up. No matter what is going on, never give up." You got that? Too many people love you and need you in this world. You've got a gal flying from Israel for Pete's sake. I mean dude, come on.

Yeah Phil, can't argue with the logic of Sangye.

........and Hammy, you scared me with that profile - I thought Jack was also coming back to tell Phil to get his butt out of there

Safe travels Alysia

[Psyborg]

Keep on fighting Phil! We are all praying for you.

Alysia I hope you have a very safe trip.

[sbeach78]

Did Alysia ever make it to Phil's side? Has anyone heard anything today? Phil your an inspiration to a lot of people in here , praying for you.

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

[Pete]

She just got there a little while ago. Stay tuned...

[Alysia]

Thanks so much every one. I love you. Thanks for the laugh Hammy and Sangye. I came here at about 2 oclock at night. 26 hours trip. Worth it to be back to my sweetie. He is very sweet but not getting better yet. Still in ICU. The docs are not sure if he is not getting better because of the infection, the WG or both. They are cautious with more meds. He also need to fight the infection. So they stopped the imuran. He still on pred 80 mg. No more rtx for now. AND they decided to do plasma exchange. Does any one knows about it ? And please bring some encouraging info.... he will start it tomorow. Right now they are putting the line for it. I am outside the room. The man is a super hero. We know that. Please continue to pray. Thank you so much. God bless you.

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[Psyborg]

Wish I had some info for you, but I don't have any personal experience with plasma exchange.

[LisaT]

I don't know about plasma exchange either, I'm just chiming in to say I'm thinking of and praying for you all the time. I wonder why they stopped the Imuran? That has been the best one for me (unless it's causing the headaches), but I know we're all different. Both my rheumy and ENT were surprised that it helped subglottic stenosis, which usually requires repeated dilations. So I wonder whether it might do good things for lungs too. Might be worth asking the docs? I guess because it suppresses the immune system and he needs to fight the infections.... Tell Batman we all love him and I'm sending healing prayers and love to both of you...

[rif]

If plasma exchange is same as plasmapheresis this can prove very beneficial as they continue it until all the bad cells are eleminated from the blood which can take several transfusions, My son had this when he was initially admitted to ICU, the specialist renal dialysis nurse came to his bedside with portable machine each day. I am sure this gave the doctors time to consider best form of treatment to save his life. Although my son was heavily sedated on life support which they had to do because of lung haemorraging I was assured the whole thing was painless. It looks worse than it actually is.

Sending you both my best wishes and prayers that this will give Phil the same result it gave my son.

Rif

[annekat]

I think your guess is correct, Lisa, that they stopped the Imuran because it is an immunosuppressant that will interfere with him fighting the infections. I am not clear on whether they know for sure that he is having a WG flare.

[drz]

Yes, plasma exchanges are often referred to as plasmapharesis. I had umpteen of them initially (they stopped counting units of plasma at a 100 plus units) and think it played a large part in my survival. I think Don had some too. It is sort of like getting an oil change as they remove the old plasma and put in new fresh stuff. I slept through many of them and expect Phil will too.
Best wishes for better health for Phil and less stress for Alysia


If plasma exchange is same as plasmapheresis this can prove very beneficial as they continue it until all the bad cells are eleminated from the blood which can take several transfusions, My son had this when he was initially admitted to ICU, the specialist renal dialysis nurse came to his bedside with portable machine each day. I am sure this gave the doctors time to consider best form of treatment to save his life. Although my son was heavily sedated on life support which they had to do because of lung haemorraging I was assured the whole thing was painless. It looks worse than it actually is.

Sending you both my best wishes and prayers that this will give Phil the same result it gave my son.

Rif

[drz]

Gosh that boy is greedy :) One problem not enough ehh? Mind you, if I got you to come and hold my hand...:)

Give Phil my regards Alysia and bring that smile back to his face and take care of yourself too. xx

I was really shocked and surprise to see Jack's avatar on a new posting as seeing it reminds me of Jack. I bet others did a doubled take too when they first saw it.

[Geoff]

Yes I can verify Drz's account of plasmapheris as I had numerous treatments when I was first admitted to hospital. Yes it looks mighty weird what with the machinery and miles of tubing but my experience was totally pain free and took several hours per treatment.

It certainly turned my health around, so much so that they commented on the fact that they had never seen such a recovery, especially with regards to my lungs.

So Alysia, I would take a deep breath and help Phil along this new path, It might not be the total answer but I always say as long as you have options you can live in hope.

Tell Phil to hurry up and get well, as the damage to my knees with all this praying is crippling me!

[Jayne 14]

So pleased your with him
Prayers & love from Worcestershire - u k


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[gilders]

Hope you're doing well.
I was initially on dialysis Mon, Weds and Fri. Then Tues and Thurs was plasmatherisis days. Both were painless.
Dialysis mimics the filtration of the kidneys. I was told my plasmatherisis worked by removing blood, spinning it at high velocity which separates the plasma from the rest of the blood. New plasma is "pumped" into your bloodstream at the same time. The new plasma was in glass jars and looked clear, but slightly yellow. They're about a pint in size and I think I went through 3 each session.

[LisaT]

Has anyone heard anything this morning?

[Alysia]

If anyone has the private phone or email of dr. Specks please pm me asap. Thx.b

[LisaT]

Does anyone know if Alysia got this number? I pm'd Cindy in case she has it... Don't know what else to do from here but will look online...

[Alysia]

Phil is not getting better. The inflamation marker is higher from day to day. I am madly scared. The docs here say that he might not survive. Already 2 days of plasma exchange with no change. How long does it takes ? We want to consult with Dr. Specks but we dont have his phone number. I sent him an email and checking around. Please, every info can help. Please pray for my sweetie. Please, God, don't take my sunshine away.....

[LisaT]

Alysia, did you receive pm with the numbers Cindy sent? Look back in your FB messages from me I just double checked and they're there. Hoping, wishing and praying for a turnaround. Maybe it's just taking a bit of time and the plasma will kick-start healing very soon...

[LisaT]

Foothills should have a chaplain who can say some prayers with or talk with Phil if he's afraid or feels that would help.

[Geoff]

OK ALysia, hang in there, I had about 5 plasmapheris treatments on consecutive days so perhaps Phil needs a bit more time, it might take time to turn the whole thing around.

Keep tough and pass on all our best wishes to Phil.

[rif]

Hi Alysia

It can take several rounds of plasma exchange, my son had over two weeks of it daily before they were confident it was showing signs of working. Hope you got those phone numbers.

Rif

[Sangye]

Alysia, is there a reason why you're only trying to get hold of Dr Specks and not other Wegs specialists? I recommend contacting every single one until you get through. And his doctors should be on the phone with other Wegs specialists immediately.

Sending my prayers to Phil and hoping he can turn it around quickly.

[Miranda]

Prayers are still coming!

[annekat]

This site has been shared on other threads here and on Facebook recently: InformationCanVasc (http://www.canvasc.ca/InformationCanVasc.htm). It sounds like there is some sort of "consortium" center in Calgary, and other related ones throughout Canada. On the pages of the site you can learn more about this organization and get names of vasculitis docs, some in Calgary. There is also a conference in Calgary happening Oct. 2nd! I wonder if Phil's docs are missing opportunities to talk to vasculitis doctors right there in Calgary. This is all so confusing. He's lying there in grave danger and people aren't using the resources available? I don't get it. I hope this can help in some way, that there really are docs nearby who might be able to help.

If you scroll down on the page linked above, you will find names of docs who are "core members" in all the provinces of Canada; there are two "centers" in Alberta, one of which is in Calgary. I'm getting that these are research and referral centers, not treatment centers, but the docs who are members are certainly vasculitis docs, in rheumatology or other fields related to vasculitis, and it would seem they would have their own practices and treat patients as well as refer patients to other docs and provide information based on their expertise. Contact info is given for these docs. I'd try calling the doc listed first in the Calgary section under Alberta.

[drz]

If anyone has the private phone or email of dr. Specks please pm me asap. Thx.b

I don't know how Phil emailed him in the past.

I had to call his secretary and explain what had happened since my last visit with him two weeks ago and the questions I had for him. She gave me her email address and offered to forward my questions on to him. I thought I could email him on the Mayo site like I can for U of MN Fairview clinic but couldn't find any link. I can download his last report and lab results but saw no way to contact him through my Mayo account.

He still has not responded to my questions so I wonder if he might be away from the office since I have heard he is usually rather prompt about responding to such questions. If my situation was an emergency I believe one of his colleagues would also respond if he was not available

I think his nurse might respond to any questions if you can reach hr through their regular phone line for their department.

[vdub]

I have been off the forum for about 2 weeks and missed a lot of this. And, for some reason, I can't read the first page of this thread. Only the 2nd page comes up for me, but its enough to figure out what is going on. I sure feel bad for Phil and Alysia. It must be awfully frustrating for Alysia to be in Israel and so many miles away. Like everyone esle, I wish there was something I could do. I am only 500 miles away from Calgary, so if there is something you think I could do for you, Alysia, please let me know.

[annekat]

vdub, yes, you have missed a lot. Alysia is currently in Calgary, at Phil's bedside, as he goes through plasma exchange. This is her second trip from Israel to there within the last 3 months or so, both extended stays. Maybe you knew about the first one. Unfortunately for some forum readers, more info is often shared on Facebook than the forum lately, probably because Phil and Alysia have many friends and family there who are not forum members.

[vdub]

Thanks, Anne! I'm glad she's there!

[Psyborg]

Alysia, I agree with Sangye, please try to hit every specialist you can until you can get the information you need. I am praying for both of you...I am glad you are able to be there with Phil through this.

[Sangye]

Alysia, I don't know you since I've been off the forum for awhile, so maybe you're able to summon the tiger in you already, I don't know. But if not, you must get in the doctors' faces and demand that a Wegs specialist be contacted asap. Don't accept any excuses, no "We're trying the plasmapheresis and then we'll see" nonsense that often happens. I've lost too many friends in this group to doctors being in over their heads. Even the Wegs specialists consult with each other. Thank you for being at his side to make sure he has everything he needs.

[annekat]

I agree with Sangye. I know Phil thinks his docs are quite competent, and maybe they are. But the more feedback you can get from any top WG specialists, the better. Not just ones listed in Canada on the CanVasc site, but any of the top ones that we have all heard of on here. I know you were trying to reach Dr. Specks and he seems like a good choice, since he has expertise in lung issues. But if nothing is happening there, then there are others you could contact. I should think any of them would be willing to have a say in this extreme and dire case. I should think Phil's docs already know who these top specialists are and could be making an effort to consult with them, saving you a lot of footwork when you are so stressed out. But if they aren't making that effort, or don't think they need to, what alternatives are there but to be proactive? It is easy for me to say, because I would no doubt be such a wimp in this situation. I cannot fathom how you must feel right now, with lack of sleep, probably not eating, and so stressed and afraid that you can barely make a decision. You are probably a stronger person than I would be, though.

drz, I have gotten the feeling in the past that Phil might have met Dr. Specks, at which point he could have been given his email address. I also think Phil may have given it to Cindy, who may have shared it in a PM on Facebook. Those are only impressions floating in my memory, and they could be wrong. But I know Phil has done a lot of networking with WG docs and patients, and it's possible that Dr. Specks would at least recognize Phil's name. I think your suggestion to try calling his nurse is a good one. It does seem like any attempt to get top specialists involved here is likely to take time and be convoluted. So if Dr. Specks indeed knows Phil or remembers him, it seems a quicker response might be forthcoming, although it hasn't been yet.... And he is a lung specialist. But some input from some top WG rheumatologists would also be a very good thing! I, for one, am concerned about whether he is getting the most effective meds in the right amounts for this urgent situation, if in fact they know for sure it is WG causing the inflammation.

[Alysia]

Scary days and nights here. Blood tests are tiny bit better today. Today day 4 of plasma exchange. Tonight RTX. And tomorow they are going to skip one day of plasma exchange. It it how it should be done ? Please pray.

[gilders]

Scary days and nights here. Blood tests are tiny bit better today. Today day 4 of plasma exchange. Tonight RTX. And tomorow they are going to skip one day of plasma exchange. It it how it should be done ? Please pray.

Hi Alysia,
Don't worry about him skipping a day of plasma exchange. I only had it twice a week for 4 weeks (if I remember correctly).

Thanks for the updates. As you know I tend to "disappear" for a while and then become more active on this forum. I'll certainly be hanging around, praying for Phil's recovery.

[rif]

Hi Alysia

As already said do not worry about them skipping a day, my son had his plasmapheresis in blocks of five days.

Rif

[annekat]

I'm so glad there are people familiar with plasma exchange on here, to set Alysia's mind at ease! She is going through so much anguish; everything helps, and just imagine how it would be without this great community of helpful people.

[drz]

Scary days and nights here. Blood tests are tiny bit better today. Today day 4 of plasma exchange. Tonight RTX. And tomorow they are going to skip one day of plasma exchange. It it how it should be done ? Please pray.

i was pretty sick during my time of plasma exchanges and had many I know but I don't think they did them every day as some times the body needs a while to sort of recoup from the treatments. I know I also had daily lab work and x-rays too to help monitor my treatment and expect they are doing same for Phil and may be using this info to determine when or how often to do the plasma exchanges.

[drz]

I know Phil has emailed DR. Specks in the past so wouldn't that address be in his mail box of contacts. If those emails were saved wouldn't they turn up in a search of past messages. I have found some addresses that way from old emails. I would also call his secretary and find out if he is away from the office and who might be covering for him. Mayo is ranked number one in pulmonary in USA so they have a few very competent doctors in that department.

[Alysia]

Thank you so much for your wisdom & info & prayers & love & support. We couldnt have made it without you. Love you <3

[Alysia]

At Monday night they gave my sweetie RTX but they gave it without solumrdrol before. I tried to insist on it, talking about the protocol but the bitch nurse kicked me out of the room and started it. The day after I asked the docs about it. They said that 80mg pred are enough and that rtx is not givven to people who are on high doses of pred. WTF ??? I think they are wrong. What do you think ?

[Alysia]

Phil's lung doc talked with dr. Specks. He doubt that the plasma exchange will help and suggests IVIG treatment. They will take blood tests today. What do you know about IVIG ? The last 3 days the blood tests are getting better, sats are better too. I was happy about it but the lung doc said that it is not signficant and makes me sad and scared again. Please continue to pray. Thanks for being with us <3

[Jules]

I've been off the site for a while and am so sorry to learn to how poorly Phil is. Alysia, if it's any help, my plasma exchange was carried out on week days with weekends off. Thinking of you both and praying. Julie xx

[gilders]

"What do you know about IVIG ?"
Not much, but this tells you the basics IVIG and Plasmapheresis (http://www.aboutgbs.com/IVIG_and_Plasmapheresis.htm)

Keep smiling and although doc doesn't seem too bothered about blood results improving, it's much better than them worsening!

[marta]

At Monday night they gave my sweetie RTX but they gave it without solumrdrol before. I tried to insist on it, talking about the protocol but the bitch nurse kicked me out of the room and started it. The day after I asked the docs about it. They said that 80mg pred are enough and that rtx is not givven to people who are on high doses of pred. WTF ??? I think they are wrong. What do you think ?

I've never heard of having Solumedrol before RTX. I know they give a little shot of pred and Benadryl (for me it was 100mg pred each time) but never Solumedrol. I've had it (Solumedrol) before but not with the RTX, so don't worry about that part. It makes sense to not give high doses of steroids and RTX together.... too much of an immune compromise.

There, one less thing to worry about.

[BookNut]

Phil's lung doc talked with dr. Specks. He doubt that the plasma exchange will help and suggests IVIG treatment. They will take blood tests today. What do you know about IVIG ? The last 3 days the blood tests are getting better, sats are better too. I was happy about it but the lung doc said that it is not signficant and makes me sad and scared again. Please continue to pray. Thanks for being with us <3

I know very little personally. It is something that my asthma/immunologist is considering for me. It is designed to support an UNDER-ACTIVE immune system....rather than the overactive immune system that I THINK is part of the Wegeners scenario. I suppose it is possible that with wegs, the immune system might be over-boosted and need to be tamped down. BUT...this is COMPLETE speculation on my part. Sounds like Dr. Specks should know best. Hopefully the hospital doctors pay close attention to his recommendations. I am SO glad that you have been able to get in touch with him.

And by the way...maybe you could encourage that bitch nurse to take some of her vacation time and get away from the two of you. You need much better than that!

[Ruotsi1]

I just had my first Rituxan infusion last week and they gave me 120mg solumedrol, Tylenol, and Benadryl prior to my infusion per MD at Cleveland Clinic.

[drz]

I just had my first Rituxan infusion last week and they gave me 120mg solumedrol, Tylenol, and Benadryl prior to my infusion per MD at Cleveland Clinic.

They are knowledgeable and skilled in this area but the major centers for Wegs some times develop different protocols that work for them so there may be more than one way to do things.

[me2]

Standard protocol here where I live is to use Solumedrol minutes before the Rituxan. I don't remember there being an issue with what my daily dose of prednisone is at the time. I have been on as much as 60 mg probably when also getting Solumedrol and Rituxan. I don't claim to know a lot about this but I don't know how you would end up reducing your daily prednisone if you don't do SOMETHING like Cytoxan or Rituxan. I don't remember hearing about there being a problem using either of these while also on high dose prednisone.

I had IVIG several years ago. I could not remember how it was supposed to work which I thought was kind of odd.
Of course very sick at the time. So I looked it up and found this: The precise mechanism by which IVIG suppresses harmful inflammation (http://en.wikipedia.org/wiki/Inflammation) has not been definitively established but is believed to involve the inhibitory Fc receptor (http://en.wikipedia.org/wiki/Fc_receptor).[4] (http://en.wikipedia.org/wiki/Intravenous_immunoglobulin#cite_note-4)[5] (http://en.wikipedia.org/wiki/Intravenous_immunoglobulin#cite_note-5) However, the actual primary target(s) of IVIG in autoimmune disease are still unclear. IVIG may work via a multi-step model where the injected IVIG first forms a type of immune complex (http://en.wikipedia.org/wiki/Immune_complex) in the patient.[6] (http://en.wikipedia.org/wiki/Intravenous_immunoglobulin#cite_note-6) Once these immune complexes are formed, they interact with activating Fc receptors on dendritic cells[7] (http://en.wikipedia.org/wiki/Intravenous_immunoglobulin#cite_note-7) which then mediate anti-inflammatory effects helping to reduce the severity of the autoimmune disease or inflammatory state.Additionally, the donor antibody may bind directly with the abnormal host antibody, stimulating its removal. Alternatively, the massive quantity of antibody (http://en.wikipedia.org/wiki/Antibody) may stimulate the host's complement system (http://en.wikipedia.org/wiki/Complement_system), leading to enhanced removal of all antibodies, including the harmful ones. IVIG also blocks the antibody receptors on immune cells (macrophages (http://en.wikipedia.org/wiki/Macrophage)), leading to decreased damage by these cells, or regulation of macrophage phagocytosi (http://en.wikipedia.org/wiki/Phagocytosis)s

--- So I remember now why I don't remember how IVIG works. It is because it is not precisely understood. I remember being less than encouraged by hearing that but then I realized how many things there are that we don't really understand how they work - we just know they do. I remember working out my own concept (which may be wrong, or just not precise) is that IVIG floods the blood supply with antibodies and overwhelms and confuses the unhealthy process that is currently going on (at least in my case).

The only fact I can convey is that my experience of it was that it was not like getting Cytoxan, Rituxan, or large doses of Solumdrol in that those things initially made me feel worse initially. I could not even feel anything with the IVIG- which is a good thing


I found this article about using IVIG in conjunction with high dose steroids and a pregnant woman with Wegener's: Successful treatment of new onset Wegener's gr... [Mod Rheumatol. 2008] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/18299958)

I also found this article that talks about the fact that it is used in conjunction with other therapies. It also talks a bit about what is confusing us. The fact that it is used for people with immune deficiency and also people with an over active immune system (like WG). They use the term immunomodulator. Which to me means it is something that somehow corrects underactivity or over activity at the same time.:
Clinical applications of intravenous immunoglobulins (IVIg) ? beyond immunodeficiencies and neurology (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2801038/)


And from an NIH funded Vasculitis Research web page:

What is the role for intravenous immunoglobulin (IVIG) in treating vasculitis?Intravenous immunoglobulin (IVIG) is not often used to treat vasculitis. IVIG is the purified antibody-containing part of the blood proteins obtained from blood donations. IVIG is most often used in treating vasculitis when a patient with active vasculitis also has an infection. Unlike most other treatments used in treating vasculitis, IVIG does not suppress the immune system, and hence does not make it more difficult to get over infections. IVIG may also be used when other standard treatments for vasculitis have failed or have not been tolerated well by patients. Treating physicians usually decide on a case-by-case basis how many days of IVIG to give. IVIG is usually given in monthly courses repeated courses monthly for 3-6 months.

And probably the best summary ( you could have skipped all my other stuff) from the Oxford Journal of Rheumatology:

The role of high-dose intravenous immunoglobulin in rheumatology (http://rheumatology.oxfordjournals.org/content/49/6/1040.full)

I'm really thinking about You guys , Alysia and Phil. I'm hoping and praying that you get the same miracle that I have.
It sounds like you have great doctors on board and also a great , and well respected, consultant in Dr Specks. I met him at a WG Symposium several years ago in Kansas City and he took some time to talk with me in the hall way about some questions I had. He is very competent and also has a genuine desire to help people.

(Oh, and PS, the only contra-indication I have ever heard of for Rituxan is an active infection. For me, my sinus infection had to be treated with antibiotics before getting Rituxan.)

[annekat]

Wow, Kirk, you really know how to do your homework. I don't have time to read the links but I read what you wrote, and it sounds like a great thing for Phil, especially if Dr. Specks says so. I hope his docs will quit messing around and get on it. Actually, I don't mean that they are doing the wrong things, I just think, why not follow Dr. Specks' advice ASAP?

[Sangye]

You absolutely have to have a big dose of pred circulating before you get rtx infused. That's how they prevent an anaphylactic reaction. Benadryl is not enough. Since Phil is already on 80 mg pred daily he's covered. I normally get 100 mg solumedrol (which equals about 150 mg pred). Dr Seo said he'd be willing to go as low as 80 mg solumedrol ordinarily but since rtx is my last option he doesn't want to take a chance. I also get benadryl, but he said that's not nearly as important as the high dose pred/solumedrol.

I asked Dr Seo about IVIG a few years ago. He said they thought it was a promising treatment for Wegs but research didn't support that hypothesis. He said they use it to support the immune system if a Weggie gets too immune compromised by treatment. Given that info, IVIG might help Phil recover from the infections but it won't help if Wegs is a big factor.

[Alysia]

Thank you so much for the precious info & wisdom & support. Kirk, you are so amazing with your help. God bless you all <3

[Alysia]

So, the nurse of the plasma exchange arrived but it turned out that the line is blocked. While we were waiting for the med to open it, arrived the results of the Igg blood tests. God's hand. The Igg is very low almost zero. The vasci doc explain that plasma exchange will be wrong now & that Phil is going to get Igiv treatment asap. Prob today.

[Alysia]

Do you know what is the doze for Igiv treatment ?

[Alysia]

Igiv just started now. Please pray for my sweetie <3

[Victoriaitsnosecret]

Praying for Phil! God bless him!


😃 victoria

[jvilner]

Praying while keeping my fingers crossed!!

[Alysia]

Igg today is normal. Do yoy think Phil should get more Igiv Iv ? We dont know yet what they decide. Please help.

[Alysia]

My sweetie is on pred 80mg. 40 twice s day. The docs didnt decide yet if they are going to reduce it. I think they shouldnt. What do you think ?

[gilders]

My sweetie is on pred 80mg. 40 twice s day. The docs didnt decide yet if they are going to reduce it. I think they shouldnt. What do you think ?
80mg isn't a HUGE dose (but certainly high enough to have it's effects), so at this stage I wouldn't expect it to be reduced.

Glad to hear his Igg is normal today. I must be tired or suffering from "pred dumbness", but can't think what Igg is??:confused1:

[annekat]

I'm glad IgG is normal; that is a lot better than being almost zero, like the other day. Gilders, from what little research I did, it stands for Immunoglobulin G. What the G means, I don't know. But it is apparently what Phil is getting from the IgIV.

Alysia, my gut feeling, based on NO expertise whatsoever, is that he should keep getting the IgIV. I thought I read that people usually get it for a few days. But the ones who have had it or have more knowledge are the ones who should answer. I also feel that he should keep getting the 80mg. pred as long as there is still a lot of inflammation. Just my two cents worth.

[Alysia]

This update is going to remain on the forum only. Please be careful that it will not leak to facebook. Phil doesnt want to make his parents scared. We had a serious talk with the ICU doc today. They cant tell what is going on, if it is an infection or WG or both. He said that it might be the lungs scaring, proggresively. In this case they cant help. I cant stop crying since that talk. Its so scary. So painful. Phil is also scared and sad. Plesse pray. If any one had any idea what it can be, please help. I asked the doc to consult and he said that he will consult with dr. Fauci. Next Igiv IV on monday.

[annekat]

Alysia, this is scary. If Phil can get through the infections or Wegs flare, whichever it is, or both, and be stabilized, maybe a lung transplant would be the next step. I don't quite understand why they are having so much trouble determining if infections or WG are involved. Peace and hope be with you both. Love and prayers are sent in your direction, all day and all night.

[Victoriaitsnosecret]

I'm praying for Phil! He was the firs to welcome me and I'm sure many others to the forum. This is sad news. I'm sorry. I know there are a lot of people praying for him and sending him well wishes. Get better Phil! We're all rooting for you!


😃 victoria

[Mas78]

I too hope that his condition will improve soon, I am a fairly newcomer to this site and have been reading these updates. On the pred. I wouldn't be concerned with the 80mg dose, I also took 40mg twice daily out of the hospital, but up too 500mg during my stay. Again I hope his condition turns for the better very soon!

[Sangye]

Oh man, progressive scarring (progressive fibrosis) is terrifying. I pray it's not that. It can be very difficult to tell Wegs from infection. It's happened to me a number of times. This is a lot for you to carry, Alysia. :sad:

80 mg of pred day after day is a huge dose. The higher doses like 500 or 1,000 mg solumedrol are used only for a few days when someone is in acute crisis. It's not safe to keep him on 80 mg of pred for very long at all. That's certainly enough to knock down the Wegs if that's the underlying problem, but it does make it more difficult to get an infection under control. It's a terrible choice. You must get a Wegs specialist involved, and at this point I would recommend getting more than one to help.

Keeping Phil in my prayers.

[annekat]

I agree, Sangye. I know in the past Phil has mentioned some WG specialists in Canada whom he holds in high regard, and then there are the ones in the US, too. It sounds like he has enough presence of mind that he could make some suggestions about which ones of these he'd like his docs to consult with, if possible. Dr. Specks has been involved. There must be others whose attention could be gotten.

[vdub]

Not much I can say other than we think of you two all the time. I wish we could receive some better news soon.

[gilders]

They cant tell what is going on, if it is an infection or WG or both.

Alysia I'm going to try and be positive here. During my time with WG I've had quite a few situations where Drs have not known what is causing various problems. But the body is an amazing thing. I believe the Drs did enough to slow down the problems I had (severe WG, renal failure, septicemia and pneumonia, all at the same time) and my positive attitude allowed my body to repair itself.
You probably don't know how much of a difference you're making to Phil's recovery. With you being there it's giving Phil an extra reason to fight. If he slips in to a "there's no use fighting" attitude then that's when he's in real trouble. Try to stay positive and keep Phil positive.

I don't know what to suggest about getting as many Drs involved as possible. Ideally you only need 1 WG specialist who can make quick, decisive and CORRECT decisions. You don't want a situation where Drs are waiting for other Drs to contact them or Drs can't agree on treatments, all the while Phil is just lying there waiting. Having said that, hearing other professional opinions can help to come up with new ideas. What I'm trying to say is that don't ever feel you haven't done things the best way for Phil. There is no completely correct, best way with this illness. You being there supporting him is the BEST thing you can do and you're doing it!

[rif]

Dont like the possibility of progressive scaring, As Sangye said a Wegs specialist is vital and as many as possible to pool their knowledge, do they also have an infecton control specialist on the team too.

You are both in my thoughts.

Rif

[vdub]

You being there supporting him is the BEST thing you can do
Totally agree with this.....

[LisaT]

This update is going to remain on the forum only. Please be careful that it will not leak to facebook. Phil doesnt want to make his parents scared. We had a serious talk with the ICU doc today. They cant tell what is going on, if it is an infection or WG or both. He said that it might be the lungs scaring, proggresively. In this case they cant help. I cant stop crying since that talk. Its so scary. So painful. Phil is also scared and sad. Plesse pray. If any one had any idea what it can be, please help. I asked the doc to consult and he said that he will consult with dr. Fauci. Next Igiv IV on monday.

this is potentially disheartening news. However, they DON'T know. You must assume this worst-case scenario is NOT what is happening. It has been scientifically proven many times over now that our thoughts can affect matter and help our body's cells to heal. Tell Phil his lungs are not progressively scarring. Tell him to visualize his lungs pink, healthy, full of good clean air... I know that it's so hard not to despair, but it won't do either of you any good. I truly believe that we can will our bodies to help ourselves heal. That is not to say that it is ever one's fault if it doesn't work, but you and Phil must both try. We're all sending you healing thoughts, positive energy and prayers. Tell him to visualize all of that healing light coming his way and infiltrating his lungs, fighting back any scarring or darkness. This is the little sliver of 'healing power' (respecting the forum's non-religious nature) in each of us, and we are pooling it together for him. Soak it up... Maybe listening to a healing meditation would help? dr. Bernie Seigel has very reassuring recordings that help you to connect on a cellular level and help your healing process, I'm sure there are many others like him, maybe even someone of Phil's faith??? This type of thing has been very calming and healing for me in the scariest times.

I will try to find contact info for someone from canvasc coming to the conference. I think I mentioned before to you that I spoke with Dr. pagneault (sp.) and he was very kind and willing to consult, maybe he is a good option . I'm not at home now but could probably find the number again.

We are with you, God is with you, (hope that's ok to say here), praying he can make it through this and get better enough for a transplant and a somewhat fresh start! Xoxo

[Pete]

With the improvement in Phil's labs, we hope that his health has bottomed out and that recovery has begun. Having said that, it looks like his recovery is going to be a long, hard climb. Good thoughts for recovery heading your way...

[mishb]

Tell him - that when he gets better, he is going to be in big trouble from all of us, for scaring you so :angry:
Also tell him to stop stressing and just worry about getting better. Hopefully the doctors and any WG specialtists can worry about the other stuff.

This morning on facebook you said that his blood results were looking better than the last ones - this in itself is very hopeful. :thumbsup:

Has there been any recent talk of the lung transplant - is this still on the cards? :confused1:

[Alysia]

Thank you so much from Phil & from me for your love & support & heart-warming thoughts. You give us strength to endure and to continue fighting. Phil read all your posts, I show him on my phone. Whenever he needs encouragement he asked me to show him the forum. Love you. God bless you.

[Alysia]

Transplant is not an option now. He is too sick to suvive it. The paradox is that he had to be much healthy for it and at the same time sick enough.

[Psyborg]

Is that a permanent thing or he needs to get healthier to make it an option again?

Tell Phil I'm hoping he'll see some improvement soon.

[Alysia]

blood tests continue to get better each day. But my sweetie is not feeling better. He is working very hard to breath all the time. He can almost only work on breathing. Nothing else. Eats almost nothing. With feeding tube. He is exhausted and sweating a lot all the time. Its hard for him to talk but he is very seeet and kind when he does.

[Alysia]

The ICU doc said today that he thinks that it is not WG flaring and that the treatment for WG made things worse, like more hard to fight infection, which was there for sure. I am not sure that its not WG activity. I think that things started to get worse and this is why they added the WG treatment. I even wonder if the hole in the lung that caused the pneumothorax was not wg-made, like the hole that we have in the saddle nose ??? I dont know.....

[Alysia]

Bob. He needs to get healthier, to pass lots of examinations and to do 6 weeks of excercises b4 he can be on the transplant list.

[gilders]

Thanks for the updates. I don't know his Facebook page, in fact I don't use Facebook, so this forum and your posts are the only way I can find out how he's doing.
I know it must be worrying when he's not feeling any better, but it's going to take quite some time. Improved blood results are probably the best we can hope for at this stage and fortunately that's what's happening.

[Psyborg]

Bob. He needs to get healthier, to pass lots of examinations and to do 6 weeks of excercises b4 he can be on the transplant list.

I'll pray that it happens.

[Alysia]

Igg today is lower. Still they didnt give him Igiv IV and they didnt even bother to tell me why not. Very frustrating and scary. I am asking that a wg expert will come. So far nothing. Cant they understand the dread ? My sweetie is sleeping almost all the time. Today and yesterday. I dont know what it means. I am still trying to understand this Igiv treatment. Every info is welcomed. Thanks for being with us. Love you.

[mrtmeo]

Hi Alysia,
My prayers are with you both.

It is my understanding that IVIG is to give the person igg antibodies when theirs are too low for fighting infections, but maybe someone else can clarify.

Also, sleep is necessary for healing, so all the sleep a person can get is best.
It's hard to get sleep in the hospital. REM and slow wave sleep is where the body does the repairs.

Here is more info on sleep and vitamin D by Dr Stasha Gominak.
Videos | Sleep, Chronic Pain, and Headaches (http://drgominak.com/videos/)

[Sangye]

Sleeping in the ICU is very difficult due to the constant lights and noise. He might just be needing extra sleep because he hasn't gotten enough. mrtmeo is right-- sleep is necessary for healing. Just be there with him and that is enough right now, Alysia.

[Thinker]

I'm not familiar with IGIV treatment but your past post mentioned he was exhausted from trying to breathe so sleep may be the best therapy for him right now. I think medicine is very frustrating in that it is not an exact science and every doctor has a different opinion as to what is the best or correct treatment. Keeping both of you in my thoughts and prayers that each day will get better. Take care of yourself also, and remember, the darkest hour is just before dawn.
Karen

[drz]

blood tests continue to get better each day. But my sweetie is not feeling better. He is working very hard to breath all the time. He can almost only work on breathing. Nothing else. Eats almost nothing. With feeding tube. He is exhausted and sweating a lot all the time. Its hard for him to talk but he is very seeet and kind when he does.


I remember when I was most ill the doctors often told me if i wasn't getting worse, I was getting better. Fighting for air can be very exhausting. I and some others here had to be intubated for a week or two to get the necessary rest to allow some healing to take place. It is encouraging to me that he is able to maintain consciousness and talk with you even if he sleeps most of the time.

What the ICU doctor said about infection versus Wegs is consistent with info I got from my Wegs expert at Mayo suggesting I treat the probable infection first in my ear and around the BAHA site before exploring possible active Weg which was also listed as a possibility by reader of my bone scan of my skull. It is possible to have both infections and active Wegs at same time but it is generally safer to treat infections first before beginning treatment for active Wegs.

Glad to hear he is getting better lab numbers as I think it means he is getting better even though it may take awhile for his body feelings to catch up. Best wishes for more improvement.

[Alysia]

We almost lost him today. That over sleeping was not a good one. He continued to be very sleepy. The ICU doc came to the room to talk with me in perfect timing. God sent him. I saw that my sweetie's sats are dropping for no reason. I talked to him and he didnt respond. At that point the ICU doc and the team started to work on him. I was shaking and crying and praying, thinking that he is dying. And then he was back.

[Sangye]

Oh no, how scary. :sad::sad:

[Alysia]

It turns out that the Fentanol machine was not ok. He got overdoze of it. They put him on bi-pap machine. Thanks God not tube. Yube means the end. He is getting med to clean the overdoze. Still too scary. Please pray.

[annekat]

Alysia, you were so right to be concerned about all that sleeping. Thank God you were there to catch what was going on with his stats and to say something, and thank God the ICU doc was there to mobilize a team to get to the heart of what the problem was. Very scary indeed, that these kinds of mistakes and equipment failures are happening. I'm praying that things get straightened out and fall into place from here on, and that he heads toward recovery from all these setbacks. You are a heroic presence throughout all this. :thumbup:

[Bing505z]

The BiPap should allow him to breathe easier .... Stand strong Phil

[Randy]

I've been off the site for a while and just heard about this. Hang in there Phil, we are all praying for you. Stay positive, we need you back to dispense your great advise.

[Geoff]

Keep strong Alysia, you are truely Phil's Guardian Angel.

Keeping our hopes up that this may be a turning point and that slow gradual progress is made from now on.

[Hammy8241]

I'm with you Alysia and Phil, all the way, in my thoughts and with my love. xx

[drz]

Alysia, you were so right to be concerned about all that sleeping. Thank God you were there to catch what was going on with his stats and to say something, and thank God the ICU doc was there to mobilize a team to get to the heart of what the problem was. Very scary indeed, that these kinds of mistakes and equipment failures are happening. I'm praying that things get straightened out and fall into place from here on, and that he heads toward recovery from all these setbacks. You are a heroic presence throughout all this. :thumbup:

Even in the best hospitals with great care it seems necessary or at least very desirable to have a guardian present to over see your care. I believe my survival was due to the constant supervision provided by my family who directed my health care when I was unable to do so. They can ensure hospital staff are fully aware of any important changes in ones condition and call for help when needed. Med errors are one of the leading causes of death (third in USA) in hospitals. Phil is very lucky to have such a dedicated guardian with him. But it is a very stressful job so Alysia try to take good care of yourself too. Is there anyone there to help support you or give you a break?

[Psyborg]

Even in the best hospitals with great care it seems necessary or at least very desirable to have a guardian present to over see your care. I believe my survival was due to the constant supervision provided by my family who directed my health care when I was unable to do so. They can ensure hospital staff are fully aware of any important changes in ones condition and call for help when needed. Med errors are one of the leading causes of death (third in USA) in hospitals. Phil is very lucky to have such a dedicated guardian with him. But it is a very stressful job so Alysia try to take good care of yourself too. Is there anyone there to help support you or give you a break?

I agree Phil is lucky to have you there with him. Please do watch your own health. ALl the stress of worrying for Phil can't be good for you as well I know he would want you to be well. Still praying for both of you.

[Yvonnea]

Sending prayers and healing thoughts from Sweden for you both.

[annekat]

I have seen on Facebook that Phil's parents are on their way back again. They have been ill and that's why they've stayed away for a bit. Alysia, yes, you need some breaks here, though I know it is hard to leave his side. Having more loved ones there for support will help. Bless you all.

[mrtmeo]

Thank God Alysia that you were there to see there was a problem and get something done.
So scary.
I am very suprised that they would give someone with respiratory problems an opioid.
Opiates suppress the breathing.
Keep a good eye on him and ask all the questions you can!
My prayers are with you both!

[Thinker]

What a frightening experience for both of you! Phil is blessed to have you there with him and watching over him so closely. I agree with mrtmeo about their choice of a pain medication. It doesn't make sense unless their was no other reasonable choice for pain control. Take good care of yourself, and please share our prayers and words of support with Phil's parents. After becoming a parent myself, I now understand how painful it is to watch your child suffering or ill and I'm sure this has been a very difficult time for them also.

[Alysia]

Update: my sweetie looks today much better. He is awake and his sense of humor is back. Still on higher oxygen. No more on bi-pap after he vommited. They still checking his blood gas. I am still afraid that they will put him on tube, one nasty doc said they might if this blood gas test will not improve enough. Tube means the end. Please pray that they will not put him on tube. We had parade of docs today: the amazing lung doc, the ICU doc that saved his life, the doc that is handling the Ivig, infectious diseases expert, and resident from rheumatology. The plan is to give him more antibiotics to cover all options and to continue the Igiv according to Igg level. Seems like the event of yesterday shaked them to start fighting for my sweetie. Please dont stop praying. Thanks for your caring. Love you.

[Alysia]

I am ok. Eating healthy. Sleeping enough. Having my daily walking from my hostel to the ICU. When my sweetie holds my hand, which he does most of the time, and yesterday all the time after he was back, I dont need anything. Just that he will get better.

[Pete]

This sounds much better about both of you. Hoping it continues!

[Psyborg]

It is encouraging that he's feeling better.

[mrtmeo]

Update: my sweetie looks today much better. He is awake and his sense of humor is back. Still on higher oxygen. No more on bi-pap after he vommited. They still checking his blood gas. I am still afraid that they will put him on tube, one nasty doc said they might if this blood gas test will not improve enough. Tube means the end. Please pray that they will not put him on tube. We had parade of docs today: the amazing lung doc, the ICU doc that saved his life, the doc that is handling the Ivig, infectious diseases expert, and resident from rheumatology. The plan is to give him more antibiotics to cover all options and to continue the Igiv according to Igg level. Seems like the event of yesterday shaked them to start fighting for my sweetie. Please dont stop praying. Thanks for your caring. Love you.

You are definitely in our prayers daily.
It's possible that he may have some withdrawals from the opiate overdose.
The worst of the withdrawals last about 3-4 days.

Also, I was wondering if they checked his ANCA and PR3 values and if they are elevated, could they use plasma exchange?
Plasma exchange will remove the anca's, but not sure if it removes the pr3's.

[drz]

Not sure what you mean about being put on "tube means the end". I and some others had to be intubated to save our lives. We were kept alive by various tubes to give our bodies some rest and time to heal. I know I would not have survived without this treatment. I hope Phil is able to recover without it but i don't think being intubated means the end.





Update: my sweetie looks today much better. He is awake and his sense of humor is back. Still on higher oxygen. No more on bi-pap after he vommited. They still checking his blood gas. I am still afraid that they will put him on tube, one nasty doc said they might if this blood gas test will not improve enough. Tube means the end. Please pray that they will not put him on tube. We had parade of docs today: the amazing lung doc, the ICU doc that saved his life, the doc that is handling the Ivig, infectious diseases expert, and resident from rheumatology. The plan is to give him more antibiotics to cover all options and to continue the Igiv according to Igg level. Seems like the event of yesterday shaked them to start fighting for my sweetie. Please dont stop praying. Thanks for your caring. Love you.

[Alysia]

My beautiful man is not with us anymore. He is in heaven now.

[sbeach78]

He will be truly missed, He was the first person to try and help me on here. He has blessed all of our lives, I am a better person just knowing him. My prayers for you and his family.

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

[gilders]

Really don't know what to say. I'm so sorry. I thought things were beginning to be getting better after you'd spotted the mistake with one of the machines.

Nothing can be said to ease your (or his family's) pain. But he knew you were there. He was not alone during his last weeks.

You have been the best possible thing for him.

Pleas take care of yourself now.

[gilders]

He will be truly missed, He was the first person to try and help me on here. He has blessed all of our lives, I am a better person just knowing him. My prayers for you and his family.



I don't think there was anyone on this forum that Phil hadn't advised in some way or another. Will truly be missed.

[ArlaMo]

I am so very sorry. I haven't been around lately and had no idea Phil was not doing well until Nancy (Shupe) messaged me last week. Please know you and Phil's family will be in my prayers.

[mrtmeo]

omg. I am so sorry.
I don't know what to say, but you were with him all the time and that means the most in our last days.
Unfortunately, I didn't get the pleasure to chat with him because I came her later.
You both will always be in my thoughts and prayers.

[drz]

I am sorry to hear this. Phil had a number of close calls previously so I expected he would pull through this one too.

I am sure his leaving was eased by your (Alysia) presence and attention during his last days. My condolences.

[LisaT]

I'm in shock. I know we knew this could happen, but I really had faith that he would pull through somehow. I know words can't even begin to ease your pain right now, but I'm so sorry for you and for Phil's family. He was blessed to have you by his side through this fight... We were all blessed to have him as a friend and to share in his advice, humour, and friendship. Please let me know if there's anything I or my family in Calgary can do to help you. Are you with Phil's parents? You shouldn't be alone now. Love to you and to Phil's family. I don't even know what to say. It's too sad. I will be thinking of you constantly...

[godgirl]

I am stunned. Truly stunned. Throughout this, all I thought was "Batman can do anything!" But then again, Batman is also human...

I am so, so sorry, Alysia. And I am also so, so glad you were with him.

Praying for you, his family and all of us on this forum.

Jen

[pwc51]

Such sad news. It is hard to express the shock I feel. Condolences to all concerned - our thoughts are with you.

[LisaT]

Alysia pl check my pm on FB. I sent you contact info for the Jewish chaplain of you want someone to say Kaddish with you or just come sit with you. I don't know whether Phil's parents are there with you or not.

[BrianR]

My deepest sympathy to you Alysia and to Phil's family. No words can lessen the pain that comes with such a deep loss. Divinity brought you two together. May you find peace.

[annekat]

Alysia, this is the last thing I expected to read today. I'm so shocked and tearful, for him, for you, his family and friends, and all of us. I am at least glad that he came to and had some happy, cheerful time yesterday, with you, holding hands and being in love. There are no words to describe this loss for all of us, and right now, especially for you. You will be in my thoughts and prayers constantly. Also his dear parents and siblings. God bless you all with peace and understanding and the strength to get through this. He is at peace now and feels no pain. I love you for who you are and for all you have done, and you did the very best you could.

[marta]

I am blown away by this news.
I am so deeply sorry for your loss Alysia, yet unbelievably grateful for the fact that you found each other. How much incredibleness can happen in such a short time.
I send you thoughts of courage and peace for the upcoming days. With much love.

[Thinker]

I was so sad to read this news. I hope it gives you some comfort that yesterday he was able to talk to you and hold your hand, I'm sure it did for him. My deepest sympathy to you and his family.

[JeanMarie]

I am so sorry Alysia. Please know my prayers are with you & Phil's family. I am so glad you were able to be with him & I know it made a big difference to him. Plwase try to take care of yourself at this terrible time.

[gilders]

I am at least glad that he came to and had some happy, cheerful time yesterday, with you, holding hands and being in love.

Well said Anne.

I believe both Barbara and Phil shared 7th July as their birthdays. It's a while away but we'll have to think of something to commemorate their lives next July 7th.

[me2]

I'm sorry we have all lost Phil. He was kind and funny and genuine. I am glad that he got to know such great happiness in his life as being with Alysia before he left. Phyl, Alysia and all his family, including us weggies , will be in my prayer.

[Psyborg]

I'm so sad to hear this. Phil has always been there for everyone. I'm so sorry for your lose Alysia, but I'm so glad you were there for him in the end. Please be safe and take care of yourself, that is what Phil would want.

[BookNut]

There are no words, no matter how much we want there to be. I was sitting next to Lake Erie with my beautiful 2 1/2 month old granddaughter in my arms and feeling very happy. Suddenly, a wave of sadness came over me and I began to cry. About an hour later, I read this sad news, and I understood what I was feeling. The time of tears came to me at about the time Alysia posted the sad news. The beginning and end of life..... Phil certainly did the very most with his time in between. So many will remember Phil for his kindness and his never-ending willingness to welcome and help all the members of this forum. God Bless you Phil. God Bless you Alysia. We all mourn with you.

[carriej22]

I have been crying all day about something else, and I couldn't understand why it was affecting me so badly. My husband came home, and told me to stop crying about the silly thing I was crying about. Then, only about 10 minutes later I discovered that Phil had passed and I began crying again... I am so sad and hurt and surprised.

[mishb]

Alysia is currently with Phil's parents who made it down to the hospital - yesterday I think.

I am still at a great loss as to what to say - like everyone has said, Phil was always there/here for everyone.
I am so glad I could call him my friend.
The only thing good about Phil's passing is that he is no longer in pain and no longer suffers from WG

Thankyou Phil..........Rest in Peace

[rif]

Such a shock no words can ever be enough. My sympathies to you Alysia and also for Phils parents and family. Please look after yourself.

Rif

[Hammy8241]

Nothing left to say. Agree with all the above. Alysia you are a real diamond and Phil's star will shine upon you just as brightly. Xx

[Rose]

This is such sad, sad news. I have been checking this thread daily sometimes two or three times each day hoping and praying that Phil would turn the corner and improve. Condolences to his parents.....to lose a child no matter what their age is truly devastating. Condolences also to his family and friends and to you Alysia an angel sent to him at his time of need.

[Dirty Don]

Brave man, brave woman...all is said and done...best to you Alysia...my tears for you both...

[Brooke]

Just saw this extremely sad news on Face Book.
RIP Phil. What a great guy, he will be missed by so many but never forgotten.

[ingemlb]

I remember when I first joined this forum in early February this year. Phil gave me a lot of good advice and I found his progress thread and remember reading right through it. It inspired me to start my own progress thread as I realised these can help others who are first diagnosed.

Via Alysia I have come to hear a bit more about Phil and I feel so very sad that despite all the prayers she lost her soulmate. It is also very sad to hear about anyone losing the battle with Wegener's. I found Phil's posts inspiring. RIP Phil and my condolences to Alysia and to his family.

[janNaz]

The news of Phil's passing is shocking and very sad. My sincere condolences to Alysia and Phil's family. RIP Phil.

[makabe]

I am so incredibly sorry to hear this news. Alysia, he was blessed to have known your love. I wish you peace and comfort right now as you mourn his incredible loss. Please take care of yourself as much as possible right now. My thoughts and prayers are also with his family tonight.

[renidrag]

So sad to learn of this loss. Heart with you, family and friends. No more words.

[Miranda]

So sad. He will be missed by many :(

[NikkiNicole]

I don't even know what to say. I've been staring at this blank box for what feels like hours. It's been an hour. It feels like more. Days maybe? I don't know. I can't find the words.
I've known that Phil was in the hospital, and I eagerly awaited Alysia's posts so that I could know that he was OK. I prayed for him every day. I hoped against hope and wished against time that he would pull through. It seemed certain that he would. I don't know how or why I felt that, but I felt that he would.
It doesn't seem real. It's also a major eye opener for me. Isn't it always when we lose one of our own? Phil was our own. He was outspoken, hardheaded and extremely knowledgable in his condition. He was a friend to all of us newbies and oldies alike. He always sent me a message when something wasn't right to check in.
How can he not be here anymore?
There is only one small consolation in this ... Alysia was at his side. Sweet girl who is thousands of miles from home having to face this alone. I wish I could hug you and let you cry. I am so glad that you were with him, giving him that love and happiness he needed before he moved on from this world to the next. Phil had strong beliefs and he's in a much better place now with a body that works much better than the one he had here.
Phil, you will be missed on the forum, on Facebook, and in life. Say hello to Barbara and all the others that went before you.
To all of us left behind. I love you all and we are in this together.

[vdub]

Difficult to believe the news that greeted me tonight when I opened the forum, but at the same time it wasn't totally unexpected. I'm glad that Alysia and Phil found each other if for only a few months. Unfortunately, Alysia has to carry-on alone. I feel as bad for Alysia as I do for Phil. Very sad day....

[RudiK]

I'm so sorry to hear of Phil's passing. We all lost a great friend and advisor. I'm sorry, Alysia, that you and Phil couldn't spend more time together, at least you made his last few days more bearable. My thoughts and prayers will always be with you, with Phil and with Phil's parents. May he rest in peace.

[Sangye]

I'm devastated to hear this. Phil was part of our original group here, back when there weren't too many of us and we were like a close family. We all used to check in with each other every morning and share some laughs. Jack is gone and now Phil. My heart is just broken and yet I'm so glad I was able to know Phil. We talked on the phone a couple times too. He had the best laugh. May he never know suffering again.

Much love to you, Alysia. I cannot ever thank you enough for caring for him all the way to the end the way you did. I'm glad he died with love in his life. All my prayers are with you, his family and friends.

[Bing505z]

As it is a time of great sorrow, and a time to mourn, it is also a time to reflect and celebrate the great life he lived. He no longer suffers. He no longer feels any pain. My deepest condolences ….Rest in peace Phil …..

[dmd8765]

I am a rare poster and frequent reader, one of many I imagine who has been informed by Phil's knowledge, heartened by his humor, and rooting for him during this latest and final struggle. I was at Mayo for a checkup last week and happened upon this outside of a restaurant near the Clinic. Perfect. We will remember.

DD

[maria garcia]

Ive been in shock since i got home this afternoon and read the post on FB. Phil was there for me since my daughter was diagnosed. i always knew who to go to when i had any worries. He was a a sweet soul always caring about others and never complained about his own disease. He had a strong belief in his religion and his soul was ready to go. i just finished reading a post he wrote here in the beginning of this post. He mentioned being ready when his time came. I read that today and i cried. His physical being wanted to live, he loved life , sick and all. He had found his soul mate. a wonderful angel who held his hand until the end , who prayed with him and fought with him until the end. Today I feel his death was unfair. I'm mad and sad. i will never forget you Phil.

[mmthomm]

My sympathies to you Alysia and to Phil's family. I haven't been on the forum for a while so was shocked to see this today. Phil was one of the first people to welcome me to the group when I joined last fall and was a source of a lot of information and support by reading all of his posts. I know he will truly be missed but I am grateful that he is no longer suffering...he went through so much with this disease. Sending prayers...


Sent from my iPhone using Tapatalk

[jvilner]

Alysia-my sincere condolences to you and Phil's family. The news is very difficult to digest. Phil had a wealth weggie knowledge that helped me when I needed it and he was a warrior to the end!! I'm happy that you were by his side. Please find some comfort knowing that you gave him such joy, love and caring ness when he needed it. My thoughts are with you.

[Wegetarian]

So sorry to hear this. When I joined the forum Phil was alway there to give me helpful advice, and we talked on Skype on occasions.
But I'm glad he had you with him in the hospital, that he didn't need to spend his last days alone. So great of you that you could be there with him.

[Marci]

I haven't posted in over a year but visit quite often. I wasn't on yesterday and decided I better check to see how Phil was doing. Hoping he was getting better from what Alysia's recent posting stated and when I read the last post I was in complete shock. Can't believe and don't want to, that he is gone. He was such a rock on this board and he was always here to help. What a blessing that Alysia and his parents were with him. Sending prayers

[Geoff]

Stunned to read this terrible news. I was convinved Phil would pull through despite the seriousness of his condition.

My thoughts go to his parents who have helped him over the years; its a parents worst nightmare to lose an offspring.

And now Alysia you must gather up your strength, as Phil would have wanted.

None of us know when our time will come, but you and Phil shared a precious moment that can never be erased.

I know all of us here on the Forum wish that we could be there for you right now, to help and support you. You are in our thoughts and prayers.

[Hammy8241]

Perhaps, if Alysia lets us know the day of the funeral, we could all change our aviators for the day, to something Batman related in a show of respect for Phil. I think he'd have loved it. What do you think?

[Jayne 14]

Prayers & love to u & all his family
I echo every lovely beautiful word above and feel the love from our weggies family xxx


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[Happy Camper]

So sorry to hear this news! Phil was always so helpful to me and everyone on this page. My thoughts are prayers are with you and his family!

[annekat]

Perhaps, if Alysia lets us know the day of the funeral, we could all change our aviators for the day, to something Batman related in a show of respect for Phil. I think he'd have loved it. What do you think? I think it is an excellent idea, and we could actually start changing our avatars any time. Or we could wait until the funeral, whatever people want to do. I think the Batman themed one that you have posted here is excellent.

[Psyborg]

I think it is an excellent idea, and we could actually start changing our avatars any time. Or we could wait until the funeral, whatever people want to do. I think the Batman themed one that you have posted here is excellent.

I agree excellent idea Hammy.