January 10, 2022
We were told by my wife’s Interventional Radiologist that there isn’t going to be any more surgeries. He said that she had too many coils and not enough lung tissue for surgery. Her last surgery was so difficult that the coil had actually ripped the hole bigger, so they had to use a stent. She is going on palliative care next week, until she says she’s ready for hospice.
How the hell does a person deal with this? My wife is only 48, she has another 59 year’s of life… but nooo gods plan is to destroy my life, how do you deal with it!
January 10, 2022
Honestly, I don’t know.
If it helps to do so, tell us anything.
Is she unwell already or just no possibility of further treatment, as you’ve already said? I don’t want to ask you to go through it all with us. Just talk about it if it helps to do so.
Lots of from me to both of you.
Both the Mayo Clinic and her Interventional Radiologist came to the same conclusion.
Perhaps this is gods plan, well you know I hate gods plan. We don’t have a time line, she sees a lung specialist and then palliative care. We had asked about a double lung transplant, and they said her condition is to far progressed for a lung transplant.
Her AVM begun to present themselves on her finger tips, nose, lips, and beginning around her torso. We literally live at the hospital and just go home to sleep.
I am really, really dreading the day I wake up alone, without her. I carry a 9mm bullet around with me, I guess to entertain the thought, because I know I won’t be able to handle the loss
Excuse me if I ask some random questions but do you have children?
I’ve got a work colleague who was on holiday in Sharm El Sheikh in about 2004 when there was a terrorist attack on their hotel: a vehicle careered into the front of the hotel and was then exploded. My friend’s eldest son saw the “accident” and ran over to help and was killed in the explosion.
This was just as devastating as the situation I think you’re describing.
What I saw subsequently was that both Pete and his wife mourned the loss of their son for such a long time that it felt to me like their other kids got completely forgotten. They forgot to enjoy the people they still had because of losing one.
Now, I think it is natural, normal and completely understandable and there’s a good faithfulness about it but honestly there was so much more for them to get out of life than they were doing. And their kids needed them.
My wish for you is that you don’t lose sight of anyone else who you love, who needs you, who appreciates you, who loves you, when that most difficult time comes.
Lots of love,
Todd, I am really sorry to hear this news. I can’t begin to think I know what you are going through and feeling. Is there any local services that you can reach out to? I do know my mind would be going a million miles an hour in a whole lot of different directions. In the past it has helped me to better understand my own feelings, and ways to manage some strong emotional responses due to some personal experiences I have had as a first responder.
I know my example pales in comparison, but the point I want to make is I was skeptical until I walked in and started talking. I was fortunate to have access to the support worker within my organization, the biggest challenge was to go.
Her condition is “already showing signs that she will need special long term care” her AVMs have completely gone out of control, they are beginning to “manifest” more aggressively all around her body than what’s “normal”.
But I two cases are the same. She will be at home (when asked) where she wants to do her palliative care and hospice.
I’ve only been managing 13 hours a week of sleep. I so truly love and appreciate her but I need help, and in hind sight, I don’t want to be away from her in the event everything goes south.
Todd, it all makes perfect sense and the love you have for each other is wonderful to behold.
I assume that she has a diagnosis of HHT – Hereditary Haemorrhagic Telangiectasia – and it is this that is affecting her so widely.
Honestly, it sounds dreadful and I can’t really comprehend what you’re both going through.
I’ll always send my love, however. Lots of love to both of you from me.
My heart aches at this. I too, had a tremendous amount of frustration and bitterness. All we are guaranteed is time and we don’t know how much. I hope you spend your time wisely.
Sir I am sorry the doctor said this too you. He is not God either. I believe you should keep her as healthy as you can and wait. She is young and strong yet. Do what is right for the both of you and ask elsewhere to see if something else can be done. God bless you both and please take care.
Follows the lead of the black and brown brothers at my church when I stand, applaud and say,
"Amen, brother Rafa. Preach it! God has a plan, God is working his plan. His plan will bring more people to his world. No matter what we think, no matter what we know, God’s plan is bette for us, for those we love and for those who are around us.
I can only imagine how you both must be feeling. It can be a very lonely place no matter who you speak to. The world your life just seems to stop, and nothing, nothing is as important than family and spouses. Nothing else matters and all we want is for it to return to where it was.
I am not quite at the stage that your wife is at, but i too have been told there is nothing that can be done, life preservation only. I am unsure of your own circumstances etc, but the only thing i can offer is an ear and some kind of understanding, as at some point unless i leave my own country and seek help outwith i too will be in this situation, i am just unsure when.
If you ever need someone to vent at, speak to or anything for that matter DM/message me if that helps.
I suffer too with an AVM so can relate just like many on here. If it helps feel free anytime and i will try to get back as soon as possible.
I can relate on many levels, not only with AVMs but how people deal with certain situations.
My own brother commited suicide many years ago, i was the eldest big brother and had to be strong for everyone, including my parents. I learned to even in the short term how to deal with cetain issues and if it helps can easily chat with you.