pberggren memorial thread

[Alysia]

Today it is 9 months since my sweetie flied to heaven.... I wrote to him the following:
(it contains some religion but I am not expressing arguments just telling what had happened.... besides not many are coming to this thread so I hope its ok. if anyone find it not in place please let me know and I will edit).


my beautiful Phil,
I remember so clearly every minute that I was blessed to be with you… I remember your last day on earth.... Heaven is a prize, so much better then earth. This is why God takes the best first. you are in peace now, my sweet love, joyful in the presence of God, like you have always wanted.
Your last full day on earth was a better day for you, compared to previous days. You felt better. Your sense of humor was stronger and you made jokes and some comedy show about the scary day that before, when you lost consciousness…. You asked me to tell you how it was again and again because you didn’t feel anything and couldn’t remember. You rolled your eyes and made me laugh… we had a hope…
Our dear Fr. McDonnelle came. We were so excited to tell him what had happened. He was our best friend all those scary days in the ICU. Holy and humble man, God bless him. you couldn’t receive communion because the nurse didn’t allow you, after you threw up in the morning. You wanted to receive it without the nurse's permission but Fr. McDonnelle didn’t want to risk you. it was amazing to see in all the previous days how after receiving holy communion you looked so different, you were able to sit and talk for a while and your face was shinning in a special light… Fr. McDonnelle gave you his own scapular after he saw that I was trying to wash yours, after the vomiting. you passed with it. before he left, Fr. McDonnelle asked me to call him if we will need him at any hour…. None of us knew if it was going to be, and that it was going to be so soon…
…. Before the evening came, you threw up again. we had a dumb nurse, She just set there, chewing gum and doing nothing… but I was with you… and you were with me… you held my hand all day with your warm good hand. You held me and I held you.
You were really tired when the evening came… and worried…. Many questions… how are you going to make it…. I comforted you .... I made you smile…
I saw that your sats are dropping for no reason and I called the dumb nurse, but she said that it is just because of the angle of the bed and she made it higher.
you fell asleep peacefully with your cute smile, holding my hand. I was worried, watching your sats, I was afraid to wake you up, so I was just sitting there, holding your good hand, looking at your beautiful face, inhaling your sweet smell… if love could have heal, you would have being the healthiest man on earth..
until I was also tired…. So I wrote you a note. We always left messages to each other.
The night nurse looked like a good one and assured me that I can go to sleep. She promised to give you my note when she will wake you up for your medications. And she did.

[annekat]

Alysia, it helps you and us both for you to "re-live" these events, I think. In my opinion, there is not too much religion in it. I am not Catholic, but don't mind at all hearing about the kind and compassionate priest who was there for Phil and cared enough to give him his own scapular. Thanks for sharing.

[Alysia]

as some of you may know, I asked for an investigation at the hospital after Phil's death because there were too many fatal mistakes which lead to his death. They killed me sweetie. I sent them a letter and had a long phone talk with a Lady from the hospital and then Phil's parents also talked with her. It took them 8 months to reply.
We got the answer. It made me cry (again) and I am very angry. The answer is a disgrace. It’s a shame. Full of lies. They didn’t really check things. They are just trying to cover themselves. To escape from responsibility. Men's lives worth nothing. It seems that they don’t really care and that they are heartless not only about Phil's passing but that they don’t care about other patients who might pass because of all those issues.
If reading the following can help even one friend here, my Phil will be very happy up there, me2. His death will not be in vain.
I will post here couple of posts.
The first is the letter that I sent them. Describing all the mistakes. Then I will post the answer. Phil's mother scanned it so I will post it as a pictures. It is 5 pages.
Please let me know what do you think and what do you suggest to do. There are medical issues in their letter which seems to me very wrong.
I started to write an answer. I need your feedback about medical issues and also where to send it. I think that I will not send it to the damn hospital. I don’t trust them even a bit. I need to find someone above them to send it to him. if you know to whom I can send, I will be more then grateful.
It’s a long reading and needs time and patience. Thanks anyway.

[Alysia]

At July 20 I brought Phil to the ER at "Foothills medical center" Calgary, and stayed with him all the time until August 30. Then I had to fly back to Israel but I was back to him since Sep 16 until he passed away at Oct 2. I was with him for the first 5 days 24/7 and after that about 14 hours a day, by his bedside. (I slept in the hostel inside the hospital)
I witnessed all what he had being through in the hospital. At the times that I was not there, I talked with him couple times a day, corresponded with him, and he let me know everything that happened to him.
I have documentation of almost every day, written by me and/or by him, with friends witnessing on real time. (on facebook and on our forum).

I will first describe the situation of death and 2 days before it, and then I will continue to describe his medical history and the list of fatal mistakes the hospital did with him. mistakes which I suspect caused his death. Mistakes of malpractice and negligence. Things that should have never happened.

At Sep 30 at about 15:00 in the afternoon I noticed that the saturations numbers of Phil are dropping for no reason. I asked him what happened and he didn’t reply. I saw that he was not responding. His eyes were rolling. The ICU doc just came into the room so he moved the team and they revived Phil. Phil was back to be conscious although he was still losing is from time to time and we had to call him to wake up and to respond. The docs checked what happened and said that the pump machine which delievered Fentanyl (narcotic/ opiods/ pain killers) was damaged and delievered overdose of the medicine. this caused him to lose consciousness. They couldn’t tell how long he was already getting overdose. At that time he was already on that specific pump about 3 weeks since he got to the ICU.
More malpractice: at the 3 days before Sep 30, Phil complained about being very sleepy, dreamy, drowsy. It was because of that overdose, but No doc came to check him!
more, where were the nurses all those days, they were supposed to check the pump every shift ! more, Where was the pharmacy to make sure that the amounts of medicine are rational ? the co2 in his blood at that day were extremely high, much more then they were when he came to the ICU. (above 140. The day he arrived to the ICU it was 70). They can claim that it was caused by his deteriorating breathing but why did it deteriorate so much since he came to the ICU and got better treatment of antibiotics and treatment for his wegener's disease ?
Continue: After they revived him, at Sep 30, they said that the med last in the body only 6 hours. It is not true. There can be relapses of that med even 3-4 days after stopping it.
The day after, Oct 1, he looked better. Not sleepy and drowsy.
At the night between oct 1 and oct 2 his sats dropped again and he stopped breathing. The co2 levels were again extremely high. He passed away at Oct 2 at about 10:40 in the morning.
The day before (Oct 1) I suspected that the med is still in his body because his pupils were huge and his mouth was loose when he talked. I told the nurses couple of times. they ignored it ! No doc checked him to make sure that the med is not active anymore. No contra-med was given at Oct 1, only at the day before, Sep 30 after the event.
The day before Phil passed, the other issues that because of them he was in the hospital, looked better: his white blood count was back to normal, means no infections, his wegeners disease was treated by Igiv Iv and rituximab. His lung was up and it seems that his pneumotorax is starting to heal.
The docs said that they don’t know what killed him. all the symptoms showed to the overdose of that medicine and accumulating use of it.
Most serious: They should have never give him that medication (Fentanyl) at all ! It is a medication that suppress the breathing. It is not allowed to give it to people with respiratory problems. But they did since day 1 at the ER. They encourage him to use it: "press the pain button" and no doc ever stopped to think about the damage that is it causing him, accumulating in his body, suppressing his breathing more and more.
After each procedure that required him to "push the pain button" his breathing went worse then before. His ca2 became extremely high as a result of it, as was obvious at Sep 30. Fatal malpractice and neglect !

There is still long list of fatal mistakes which I am going to write down.

I have pictures from our romantic trip in Banff and Canmore from July 11 and until july 19, until he went to the hospital, pictures showing that he was not in such a bad shape when he went there. They made him sick more and more until they killed him. I am sorry to use this word but this is what I suspect that they did.
Also to mention that he was a candidate for lung transplant, which means that he had to be in a good shape enough to go through it. He didn’t have time to continue the procedure which he started at the hospital.

At July 20 when I brought Phil to the Er they diagnosed Pneumothorax at the right lung. First, as I already said, they put him on Fentanyl. They should have never do it ! no one explained to him the side effects of suppressing the breathing ! no one asked if he agree to take it ! no one stopped to think that it made his breathing worse. All those weeks that he was there. I wish I knew then what I know today.
Then, they inserted a chest tube in the ER – it was done by unexperienced doc, without checking on CT before, in a wrong place on his chest (too down) and with wrong tube.
Later at that day when we were at unit 61 they said all the above (location wrong, etc). by mistake one of the nurses took the tube out. So at that day he had to go for another procedure of chest tube, number 2. Again, they did it without CT, still in a wrong place, too down, although they admitted that it should be more up. Please remember that every procedure like that demanded more Fentanyl which accumulated and killed him eventually.

During his stay at unit 61 they put 8 chest tubes. I can give details of every one of them. I have it all written. The point is that it took them too much time and chests tubes to figure out that it should be higher on his chest and also to figure out which kind of chest tube is the right one to put. Only at chest tube number 7 they understood that it cant be a chest tube with pig tail but more wide and open one because the pig tail chest tubes were getting blocked from mucous and stuff like that. Chest tube number 8 was on the left side.

More then that, they should have followed him every day by cxr but they didn’t and there were couple of times in which his lung collapsed and they didn’t pay attention to this.
I will never forget the day he complained about shortness of breath and pains in the chest like his lung is collapsing. I went to tell the nurse and the nurse in charge, named June, at unit 61, at least 6 times but they ignored it. Only in the morning after when the docs came they started to check it. Still It took hours until they made cxr and until he went for another chest tube to take the lung back up. It was August 20, the day that I asked for help and the nurses ignored. From that day he started to get worse all the time.

Another point. Since day one at unit 61, I explained that he is on medications for Wegener's disease (imuran daily and rituximab every couple of months) and that he is immuno- suppressed and should not be with sick people who might infect him more. They ignored this as well. You can see in his file how many infections he was getting again and again just by being there unprotected. They should have put him in a clean room. I asked it. no one listened to me. At around Sep 10 he got Ecoli and yeast infection. It is obvious that one of the nurses didn’t wash her hands after the toilet, and didn’t put on gloves when she gave him his nebulizer. No other way that this specific germs could get into his lungs. This infection almost killed him and was the reason he was sent from unit 61 to the Icu A.

More then that, when I was there, at unit 61 and ICU A, I had to tell all the time the nurses and other staff members, to put on gloves when they treated him or gave him meds or nebuliser. Why should I tell this so obvious thing ? ? ?

Another fatal mistake/ neglect. Since day one they knew that he has Wegener granulomatosis. No Wegener expert was on his case seriously as should have being.
They only consulted on the phone and only one expert saw him when he was at the ICU, which was too late and only once. They said that Dr, Girard was on his case, but actually he saw him only once and never followed him again. They sent doc from plasmaephersis, dr. Classen, who IS NOT a vasculitis expert and he didn’t followed the case as he should have, he came only twice, when there was a need for more follow up.
Eventough I was asking for a vasculitis doc to consult with, every day, no one came. when I asked another dr. Girard, lady doc, who is working at ICU A for a vasculitis expert she told me she is an expert too. she is NOT a vasculitis doc. With all respect. (her passive aggressive behavior is another issue).
More, Only too late, 3 days before he was sent to the ICU, they started to consider that there might be an activity of Wegener as a possibility. Only then they started to give him treatment for wg. If they would have being consulting a vasculitis expert when he just came, they could have known that the holes in the lungs can be the result of wegener's activity.
2 months of being in the hospital passed by without dealing with this possibility !

More, When I tried to tell the docs of the Thoracic team about the possibility of Wegener causing holes in the lungs, they kind of mocked me. Why being so arrogant and at the same time so ignorant ? ?

I must be decent and tell that there was one saint, so to say, doc: Dr. Paul Ronald Maceachern , pulmunolgist, who gave best care possible. He even consulted after we asked for, with dr. Specks at the US, consultation which helped a lot, because Dr. Speckes told him to give Phil an IGIV IV. This treatment was miraculous because that after it, Phil's blood tests were significantly better. It was too late, when he was already 2 weeks at the ICU and the Fentanyl was already accumulating to kill him.
The consultation and treatment should have happened long before. It was neglect not to consult with a vasculitis expert, and not to have one checking him regularly. The vasculitis foundation is offering docs for consultation for free.
Also, they should have give him the Igiv treatment every day in a row but they only gave it in interval of 6 days, eventhough the blood tests of Igg showed that it drops and he should have get it before. He should have given that treatment long ago but they didn’t give it because they didn’t bother to consult with a real expert.
They say at the ICU all the time that they don’t know and cannot tell what is going on with him, if it is the infection, the wegeners or other. I asked them to bring an expert. To think outside the box. They didn’t.

Another mistake: they gave him in the ICU an IV of Rituximab not according to the protocol. They must give solu medrol 120 mg before, and they didn’t. We can't tell what damage it caused him. again, more neglect, ignorance, malpractice, arrogance. When I tried to insist, the nurse kicked me out of the room. Her name is Collete.

They can claim that he was very sick and dying anyway but being already sick should have made them more attentive and responsible and caring and cautious and not the opposite.
They could have saved his life if: they were not putting him on that fentanyl medication, letting a vasculitis expert follow his case from day one, cautious not to cause him to get unnecessary infections, then he could have survive and still be with us.

I also want to be honest enough and to tell about another saint that was in ICU A. I don’t know his full name. his first name is Neil and he is the manager of the nurses. He was very caring, supportive, thoughtful, precious kind soul.
It there is a way to send my gratitude to Neil and to Dr. Macchearn (the good doc I wrote about above) I will be grateful. I don’t want only to blame but also to give credit to those who deserve it. too bad that others were not like them.

Phil is the love of my life. Nothing can bring him back but if that investigation will be effective enough to save other patients life, then I did what I should do, to honor Phil's memory and life.

[Alysia]

first page. I "cut" the private info.

[Alysia]

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[Alysia]

I know it’s a lot of reading and I don’t want to overwhelm the kind friends who were willing to visit this thread..... so I will try to be more specific and accurate in what I am looking for:
What do you think about :
1.contrainidication to the use of Fentanyl and hydromorphin in patients suffering from respiratory problems, and wg. Do they have to ask patient's consent, to explain the risks ?
2. the necessity of sterile environment for us. Sterile/isolation room ? use of gloves always ? etc. how can one be infected by e-coli & yeast in the lungs unless by a dirty nurse ? (sorry, I am angry!!)
3.the necessity of involving wg expert in the treatment. From the beginning.
4.the necessity of daily cxr in a case of pneumothorax and chest tube ?
5. whom can I address ?
Thanks anyway.