pberggren memorial thread

[mishb]

Such a gorgeous place.

I love these photos

[Alysia]

So today, a year ago, started in a magical place, romantic condo in Canmore, and ended after many scary rough hours in the deathtrap called: "Foothills Medical Center". It was the beginning of the end...


We were supposed to drive back to swift current. Before anything Phil needed his morning's irrigating and nebulising. He also tried the exercises that his new respiratory therapist gave him with the 'acapella device'. Later we asked again & again if the device might have triggered the lung to collapse. We got negative answers. I have my doubts. Weggies friends, please be careful.

Suddenly my sweetie said that he was not feeling well. He asked me to pack for him and to take him to the hospital in Calgary. He became at once very weak & quiet. Being totally attuned to him, beyond any words, I packed & drove to Calgary as fast as I could, while being careful not to shake the car. I sensed that my sweetie is in pain.

I dropped my sweetie first in the ER and then went parking.

In few minutes I was back to him and I was amazed & scared seeing that he was already surrounded by couple of nurses and being checked.
I asked him: "what did you tell them that they accepted you so fast ?".
Dr. Phil said: "that I have pneumothorax".
I asked: "what does it mean ?" And he answered, sadly: "it means that I am in big trouble".

He always knew to say a lot, in few words.

Then they inserted through his rib cage a chest tube. It must have being terribly painful but my Batman didn't even bat. Not one sigh. He was making joke with the stuff and then tried to make me happy, seeing me tearful.

He always knew how to make the best out of the worst. But he also allowed me to cry: "its ok. You can cry. Let it all out". While holding me. So kind & caring & loving.

Then they took us up to the unit. One nurse wanted to send me away. I said that I am not going anywhere. I think in another day I told a nurse who wanted me out of there, that she will have to bring the police for that. She didnt. The first 5 nights I slept on a couch near my sweetie.

That day didnt ended. Another nurse, by mistake took out the chest tube while changing the dressings. At 21:00 at night we went for another procedure of inserting chest tube. Tough day.

But as tough as it was, right after dr. Phil understood what the treatment should be, he was more relaxed, joking, caring and most amazing by his gratitude for everyone and everything. Especially to God.

[Alysia]

I wrote to my sweetie:

I want to find those stairways to heaven
and climb them up to you
and write on each one and one
how much I love you
With sweet memories
with smiles and tears
With every breath that I take
with every beat of my heart...
untill I will get there
and you will be waiting for me
To hold me again
and never let go
forever.
it will be heaven.

[Alysia]

10 months since my sweetie passed.... I wrote to him the following:


10 months since you flied to heaven, my pure Phil​ and a year since those rough days of your last fight on earth...


so many memories, good days & bad days, pains, fears, tears and also laughs & smiles & endless love...
I am grateful to God for sending me to be with you just in time, for every minute of just being with you, my courageous Batman, and for taking you to heaven.


I just wanted (still do) to be near you all the time, remember ? when I had to go to buy some things I used to tell you: "don't make troubles while I am away" . you always smiled big at me. Oh, I miss your melting cute smile, my beautiful sunshine...
Remember how tearful I went to my room at the hostel, when the Nazi nurse didn't allow me to stay after 21:00 ? But then we chat on facebook.
Whenever they did any procedure I was grateful when they allowed me to stay in the room, wearing mask & gloves... otherwise, being restless waiting outside the room, praying so strong to God that I think that the echo of my prayers was heard all around heavens....
Like that Saterday night when they took you for another chest tube, urgent one, and they treated you until 02:00 am or so... I refused to go to sleep until I saw that all is well with you.... and you, half a sleep, half saying something cute... Always so sweet, so loving...
It was just unbearable, unthinkable, to be away from you...
It still is. How can I be so long so far away from you ???


So I try to be like you, my super hero & my inspiration, like you endured most rough times with patience, peace, Faith & love. I am still so far behind you, but I pray to be worth to join you. I love you always, in all ways & forever.

[Alysia]

Rough days with all the memories of my sweetie's last fight a year ago... it feels like yesterday and at the same time every minute without him is a torture... I miss him so much... the world is so dark, empty & alienated without him... feeling lost....
2015-08-08 21.47.48.jpg

[Alysia]

"And can it be that in a world so full and busy, the loss of one creature makes a void, so wide and deep that nothing but the width and depth of eternity can fill it up!"

(Charles Dickens)

2015-06-13 14.00.07.jpg

[kaysee]

Remembering Phil. Can it really be a year already. Rest in peace Phil. We will never forget you.

[Alysia]

I want to update about my answer to the hospital. I wrote our answer (with Phil's parents) but didn't write back to the damn hospital (FMC in my letter, Foothills Medical Center) but to "Alberta Health Services" which are above the hospital. The lady there first tried to convince me and Phil's mother on a phone call to "close" the file. I made it clear: not so fast. I wrote to her back:

"I can understand why you and FMC wants to close the file, I feel your pressure on us to do it.
But it does not respect my man's life and death, our grief and mostly the fact that his death could have possibly being avoided.
Eventually the file will be closed, but not before those who are responsible for his death, will, at least, know it and do everything they can that not one patient will die like that.
My man's life is so very precious. Please respect that".

my sweetie would have now say: I am glad you are by my side....

so after that, the lady from Alberta Health Services changed her "tone" and asked us to send all our concerns with suggestions and she also asked what would be an appropriate response from our point of view, so I wrote to her the following, again, after discussing it with Phil's parents:

an appropriate response, from our point of view, will be :
1. FMC accepting responsibility for their malpractice, negligence, fatal mistakes, arrogance that prevented life saving consultation, and the use of a drug which killed our Phil. No more lies. No more dismissing. No excuses. No going around. No manipulations.
Simply acknowledging the facts. With full respect to Phil's life & death.
2. Making changes inside the health system about all the issues that we mentioned. Relating seriously to our suggestions, in order that not even one patient will die again, as a result of those issues.

all the issues are in my letter to her, which I will now post on another post.

[Alysia]

This is my answer to the answer from the hospital plus my suggestions for future treatment. I hope that my suggestions can be helpful for you my friends, while negotiating about decent health care.




My answer to the letter from "Foothills Medical Center" from June 15, 2015.

Priority 1#: Fentanyl use:
why was Fentanyl started in the ER when the patient has Wegener's Granulomatosis (WG) disease?
FMC answer: there is no contraindication for use of Fentanyl in WG.
My answer: the point is that Phil had 5 lung diseases at once: not only WG: he had WG, Micobacterium Abscessus, Bronchial Stenosis, Bronchiactesis and Pneumothorax. He suffered from severe shortness of breath. He had serious respiratory problems. They knew it all, both the ER and at the unit 61.
There is a clear cut contraindication for the use of Fentanyl with patients suffering from respiratory problems, like Phil. It is well known fact that Fentanyl and or hydromorphine can cause respiratory depression until death. As was the case with Phil.
FMC are ignoring those facts in their reply.
They could have used other pain reducing meds. But They didn’t. (suggestion for future treatment of patients, especially with respiratory problems: don’t use Fentanyl or hydromorphin).
They should have explain to Phil the side effects and the dangers of the use of Fentanyl and to get his formal consent for the use of it. or to enable him to refuse it. he was very strong and could have endured pain if he would be informed about the dangers of using that med. but they didn’t. (suggestion for future treatment of patients: to give all information about the dangers of the drug and get formal consent).
They could have limit the use of Fentanyl only for the procedures. But they didn’t. (suggestion for future treatment: to limit the use of it to minimum if any).
He was on this medication more then 2 months, while his breathing was deteriorating and not one dr. stopped to consider the fact that what caused the deterioration was the Fentanyl. Negligence until death. (suggestion for future treatment: to make constant assessment if any use of Fentanyl, especially for a long time, is causing damage).
It is well known fact on the medical literature that use of Fentanyl can cause respiratory depression until death. Didn’t the doctors know it ? if they didn’t then they are not qualified. But if they did, it is a medical negligence causing death. I don’t believe they didn’t know it.
Switching the Fentanyl in the ICU to hydromorphine, (like FMC wrote), only make things worse. Hydromorphine can also cause respiratory depression. It’s a drug which is being used in executions. Again, no one asked for Phil's formal consent or for his parent's consent. They can't give medicine which can kill a patient without his formal consent. It is unethical. (suggestion for future treatment: get a consent after giving full information about the dangerous drug).
More, the withdrawal symptoms of hydromorphine can last 72 hours and not like I was told in the ICU, that it is only last 6 hours. They treated Phil for withdrawal only in the first hours but not later.
I quote: "the clinical team felt that Philip did have an episode of narcotic toxicity, based on the clinical findings at the time…..this type of episode can occur due to other issues, such as build up of metabolites (products of the breakdown of the drug by the body) in the blood stream".
They do admit that the narcotic toxicity was the result of the medicine, this way or another. It doesn’t matter if the pump was fine or not. They were responsible to his life and they failed. It should have never happened. They should have watched him, while on that drug to make sure that there will not be such "build up of metabolites". No excuses. (suggestion for future treatment is obvious).
This drug should have never being given to Phil. Never. It not only killed the pain. It killed my beautiful man.
More, It is a fact that the nurses and dr. Lam told me and Phil's parents on the phone, that Phil got overdose of that medicine. It is either they lied (which I doubt, they were all too excited during the event to be able to lie) or that FMC are now making excuses and lies to escape from responsibility.
Why didn't the nurses or physicians assess his condition ?
It is true that the nurses assessed him but there were days in which only a resident, who knows nothing, came to check him and it was not a decent check like a patient in the ICU should be given. At the 3 days before Phil lost consciousness when he complained about being sleepy NO doc checked him. I informed the docs on their visit but they just decided to lower his sleep medicine. But no dr. came to check him ! nurses are not enough. Otherwise why being in ICU ? (suggestion: a real doc (please forgive me, dear residents) should check a patient on ICU not only once a day, which didn’t happen ! but also couple times a day).
And, its not my business but how can a poor shy resident learn anything without an expert beside him ? just to say that in unit 61 it was much better, residents came with experts and had the opportunity of learning. On the ICU, where docs should fight for patients lives, its unthinkable that for couple of days only a resident will see the patient. No matter what. And this was the case with Phil.

Priority 2# spread of germs:
FMC are only mentioning what the policy SHOULD BE, but they don’t give any answers why things were not according to it. Why the unit was filthy ? where did Phil got the infection of the e-coli and yeast in the lungs ? How did the germs get there ???
I do believe that the nurse in the ICU who told Phil's father that he was infected at the unit, didn't lie.
They totally ignore my observations about treating Phil without gloves. Maybe there is a need to use gloves more then they think. Some of the nurses are NOT following the procedures of hygiene as they should have. I saw couple of nurses working without washing hands, without wearing gloves and without using hand sanitizer. I also saw respiratory therapists who came to treat Phil or change the oxygen etc. without any hand hygiene.
Again, FMC are escaping from responsibility.
(obvious suggestions for future treatment: to make sure that the staff will wash hands, replace gloves, use hand sanitizer, make sure the unit is clean, etc.).

More, It make no sense to claim that Phil was not in a condition to demand sterile environment. Being immune compromised is enough. Not only in Israel, UK, US, Australia but even in Canada in another hospital, a friend with WG in a much better condition, got a private sterile room. It is also what the vasculitis foundation recommends. If there was a vasculitis expert on his case since the beginning, I am sure the expert would have demand that.
Since the first day I asked the nurses and the docs again and again not to risk Phil in a germ's full-environment. Not only they ignored me, they even scolded me for asking it.
(future suggestion: patients who are immune compromised need a clean, sterile room and handling. Too many are dying in vain because they are not properly protected).

Priority 3#: lack of vasculitis specialist:
The only consultation was on the phone after Phil's mother and I asked for it and it was only because we were blessed to have dear dr. Paul Mcchcrean. He was the only saint in that place. (if there is anyway to thank him, I will be more then grateful). The ICU docs didn’t agree to consult with an expert. This consultation, however, was only once, on the phone and too late.
There should have being a vasculitis expert on his case since the FIRST day. And there was none. It is a fact. They didn’t consider his WG as something crucial enough, out of ignorance and arrogance. If they would have asked an expert they would have understand that his WG was smoldering, causing the holes in the lungs, and not enabling the lungs to recover. Only an expert could have tell that although there were no indications at the beginning for flaring (only later), the WG was active. It’s a matter for an expert. (future suggestion: when it’s a case of vasculitis there must be a vasculitis expert on the case, checking the patient in person every few days).
They don’t give any reasonable answer why there was not a vasculitis expert on his case. Doctors from pulmonary, nephrology, and rheumatology, with all respect, are NOT necessarily experts in vasculitis. More, no one from nephrology came. All those who came from rheumatology were shy residents who knew nothing at all. The docs from pulmonary admitted that they are not WG experts.
There should have being a WG expert on his case. Otherwise it is a evere negligence until death.

Priority 4#: chest tubes:
Again, after being told in real time something, FMC are changing version. We were told couple of times that the chest tube that was put in the ER was in a wrong place. It should have being put by an expert and not by a resident and in a CT room and not like they did. (obvious future suggestion. Let the experts put a chest tube in the best conditions).

More lies:
The comment on page 5, is again a lie. The nurse didn’t call any doc at that day. Only the morning after I called his doc at the corridor. I can provide evidence for this, because Phil and I documented everything on our facebook and we have a documentation of that event in real time with friends as witnesses. I have documentations in real time for all my claims from above with witnesses in real time.

Its seems that FMC are dismissing any serious and decent investigation of what leads to Phil's death. They escape any responsibility. Admit nothing. But all the things that I mentioned are facts that they can't ignore.
It’s a shame and disgrace.
Instead of a decent and honest effort to really save patients' lives, they are just trying to "save" their "reputation". To "cover" themselves with lies and excuses.
This is not how a health system should work in a decent world. It’s an ill system.
"Foothills medical center" is responsible to the death of my beautiful Phil.
Sadly, they don’t really care about men lives, otherwise they would have checked seriously and for real, and would not only try to dismiss.
They should have learned from this case how to give a better treatment. But sadly they didn’t bother.
I know that nothing will bring my beautiful Phil back. but I honestly want to prevent other deaths like that. For other patients' sake, and to honor Phil's memory.
Thank you.

[mishb]

I think you have done very well with this letter.
Surely it will have some sort of impact in getting things changed for the better, so that no other has to be subjected to the same situation.

Phil will be proud of you