pberggren memorial thread

[Alysia]

These pix with tubes bring back some memories of some unpleasant tougher times. I think though it was harder for family to watch than it was to be the patient.

I do like the happy smiling one and that is the way to remember the joy you shared.

I want to appologize if I hurt you, drz, or any one else here, by any pic or post. Please let me know if I did, so that it will not happen again. Thats the last thing I want....

[Alysia]

Thank you Anne & Kirk. Your kind words warm my sore heart.... Jana wrote to me somewhere on facebook that the stay at the hospital with all the rough time we have being through, is prob traumatic for me. I think she is right. BUT we also shared many days and hours of joy of being together, even then, untill his last day. We did many funny selfies. I will try to post them tomorow to the album in my profile.

[Alysia]

When I was back, my sweetie was in the ICU in very bad shape. In the ICU I didnt take any pic of him. It was too much heart breaking, scary and stressful....

[mrtmeo]

I have been coming to this forum since July 2014 and have seen at least 4 people die from this disease.
The laxed attitude of drs regarding this disease is very scary and shows that awareness needs to be pushed.
If Drs could get this disease treated very early, there might be less deaths and much longer life spans.
Deaths like Phil's, Dodi's daughter, Barbara's and Jack,s could have been avoided if treated properly.

[annekat]

I have been coming to this forum since July 2014 and have seen at least 4 people die from this disease.
The laxed attitude of drs regarding this disease is very scary and shows that awareness needs to be pushed.
If Drs could get this disease treated very early, there might be less deaths and much longer life spans.
Deaths like Phil's, Dodi's daughter, Barbara's and Jack,s could have been avoided if treated properly.

Unfortunately, even with proper treatment, WG patients can die of complications of this disease. In our immunocompromised state, sometimes a serious and possibly unusual infection will take hold that we cannot fight off. This, I believe, is what happened in the cases of Al and Lightwarrior, the two I was most closely connected with, personally. In Al's case, he may have been able to avoid this by not going on a cruise that his family wanted him to go on. We must do our part to safeguard our health and realize we may be more vulnerable than we feel.

However, you are absolutely correct that doctors are too lax and not properly informed, especially the ones who have had little or no experience with WG and may have the arrogant attitude that, as doctors, they are qualified to treat anything. They don't realize they are in over their heads with this disease. I'm afraid that's what happened in Phil's case, at the hospital.

[Jaha]

Alysia,
I am glad that you can have all those good memories. I truly think that Phil is still teaching all of us and he is doing it thru you. Whether they be good pics or bad pics they both hold lessons for all of us about our medical care, our close connections of a community and most of all how quickly things can change. I do believe that this has to be helping your healing process and that you are doing a great thing in sharing with us. Please take care of yourself, and thank you for being you.

[drz]

I want to appologize if I hurt you, drz, or any one else here, by any pic or post. Please let me know if I did, so that it will not happen again. Thats the last thing I want....

I remember the tougher times of being all tubed up in ICU but being reminded of it made me very happy and glad that I am doing so much better now. Some times we forget and need reminders of how bad things were in the past so we can be joyful and grateful when we are doing better again. Thanks for sharing your pix.

[Thinker]

Alysia,

I have lost several family members in my immediate family and I can relate to you in how painful the grieving process is. I think it's an important part of the healing process to tell your story, which includes the good, the bad, and the ugly. After my sister and brother died, my other sister and I would talk about the same stories over and over again, I guess trying to make some sense and closure to our pain, of what seemed to be a senseless tragedy. Thank you for sharing your story and pictures with us, and know that we will listen and read them, and be here to support you.

Peace on your journey,
Karen

[Alysia]

Deaths like Phil's, Dodi's daughter, Barbara's and Jack,s could have been avoided if treated properly.

Its almost the only thread I am reading and writing in, for the last 3 months or so, so it seems that I missed the thread about Dodi's daughter.... can anyone please tell me which thread is it ?

[Alysia]

I remember the tougher times of being all tubed up in ICU but being reminded of it made me very happy and glad that I am doing so much better now. Some times we forget and need reminders of how bad things were in the past so we can be joyful and grateful when we are doing better again. Thanks for sharing your pix.

thank you so much, drz, and all the others here for your support & understanding and caring. it means a lot to me. I love you. thank you for being you and for being with me.