*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.c...ggren-267.html
trust me, I try to seduce him as much as I can :wink1:
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*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.c...ggren-267.html
trust me, I try to seduce him as much as I can :wink1:
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.
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.
I see it's a stormy time for you Phil, keep your chin up. You're in my prayers.
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.
Phil, I join in praying for you.
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.
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 :(
Best wishes for a very speedy recovery!!
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.....
Phil :love: 20 August.
https://fbcdn-sphotos-g-a.akamaihd.n...ba6504092aa3da
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:
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.
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.
you are in my prayers, and I hope to hear some good news soon.
Mike
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.
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.
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.
All best wishes and prayers from me, too, for both of you, as I've already indicated on Facebook. :wub:
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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Thanks, Alysia, and so sorry for the bad news. Praying.
You both are surrounded by all our love and support.
@Alysia
my mom mentioned something to me... she said if Phil get a lung transplant... wont the wegeners attack the new lungs as well??
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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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:
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
Any updates Phil or Alysia?
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:
Sounds like you may be turning the corner to recovery. Hope all continues to go well.
Safe travels and time at home for Alysia.
[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
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.
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...type=2&theater
and an update if I still may: Phil wrote today that he went for a walk. makes me happy. getting better !
Take care of yourself Alysia and stay safe.
Rif
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.
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:
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?
Have been thinking the very same vdub. They say no news is good news.
Rif
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.
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.
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!
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
Thinking & praying for you both
Thanks for the update heartbreaking as it is
Stay strong
Xxxx
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Thanks for the update Alysia, I hope and pray that Phil will get better. Good luck to both of you.
You two are in my prayers.
Hoping Phil gets better and that you take care of yourself as well!!
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.
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.
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!
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.
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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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.
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.
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.
Praying for you both xx
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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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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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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?
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.
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!
Phil is in my thoughts and prayers.
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.
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.
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.
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.
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.
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?
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.
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...
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.
Let Phil know we are pulling for him Alysia. And you of course as well.
Alysia stay strong! Phil feels your love from across the other side of the world. Sending prayers to Phil and you!!
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!
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.
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:crying::crying::crying::crying::crying:Just to upate that he also has infections of yeast and ecoli
Alysia, Phil will start feeling better the moment he sees you. My prayers are with both of you. Safe travels:hug2:
Godspeed! Bless you both.
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.
Wishing you both only the very best of health and happiness. Safe travels Alysia and your presence will be the best medicine for Phil.
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.
Keep on fighting Phil! We are all praying for you.
Alysia I hope you have a very safe trip.
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.
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She just got there a little while ago. Stay tuned...
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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