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my girlfriend is dying


rbroussard54

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rbroussard54

Hello everyone. I'm new to this forum. I need someone's guidance.

My girlfriend is 20 and lives very far from me. She has a congenital heart defect and has had multiple surgeries in the last couple weeks. She was told she was in heart failure a few weeks ago and that she could live anywhere from a couple months to decades. They put her on the heart transplant list.

Then they tried a "last chance" procedure. They put in a pacemaker and repaired a heart valve. It was successful and they said she was going to be fine.

Friday night, she fell asleep right after we talked on the phone and she slept for 24 hours. She didn't realize she had slept that long. Her nose had bled everywhere and she felt sick so she went to the hospital. The doctors thought a lead had become dislodged from the pacemaker and so they went in to fix it. What actually had happened was she had a minor heart attack. They had to do a few more surgeries to alleviate the stress on her heart, I guess.

Last night, she told me she is dying and doesn't have long to live. Today, she said she is prepared to die and doesn't expect to make it through the week.

I'm trying so hard to be strong for her, but I am constantly breaking down. One minute, we had a future together. The next, I'm losing the best thing that's ever happened to me. I don't want her to suffer, but I don't want her to go. It's selfish, but it's the truth. What's worse is that I'm not physically there with her.

I need a miracle. I'm not very religious, but I've been praying often. I asked God for miracle. She's so young and has been through hell and back her entire life. She deserves happiness. If he doesn't want to perform a miracle, I asked Him to take her pain away and let her be in peace.

I don't know what to do. I don't know how to cope. Can someone please help me?

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I am so sorry you are having to go through this. And at such a young age. There are so many things going through your mind right now for sure. I'm sure you want to be there with her but can't so that is weighing on you. Perhaps you can Skype or IChat as some form of 'seeing' each other. if she is in hospice care or a hospital someone there can loan her a laptop or phone with this capability (if she doesn't have one already) so that part is done and then you need to borrow one if you don't have one. im sure you both have people who care and want to help and just need to be told specifically what they can do to help. they welcome being told/asked so they can help.

 

now is the time for you to call in the calvary - everyone you can think of with amazing listening skills (aka not thye talkers) and compassion to be there for you however you operate best (phone, in person) so you can just cry with support knowing there is someone there listening and wrapping you in support. if you don't know people with this skill you can call your local hospice as this is a free service to all who are going through what is called "anticipatory" grief. you may need some meds from a doc to be able to sleep and function. just be present for her and yourself. I read a good quote this week that applies: All we have is now. So you can only be in the now and be there for her from a distance reminding her of how loved she is, joking with her if that's her thing, talking about normal stuff if her thing is to be as normal as possible to the end. just mirroring where she is at in any given moment. saying I love you and that you know she loves you, that you forgive all misgivings and hope she has forgiven you, and that you will be okay.

 

my son got cancer at 20 and just died 7 months ago at 2 months shy of 23. mind numbing. my heart breaks to hear of young people suffering. or mothers. tragic.

last I want to remind you there is still hope. unless her doctors have said they see her organs shutting down, there is still hope.

many momma hugs to you. I can only give them now to others. wishing you peace.

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rbroussard54

Thank you msmom. I really appreciate your advice. I'm sorry for the loss of your son, also. No parent should ever have to go through what you went through.

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you are very welcome. thank you for your sympathy on my loss as well.

 

I wanted to check in on you to see if you were able to get some in person local help for yourself. sometimes it is easiest to send one blanket email or text to all you know who can be supportive in the way you need/want them to be saying something like "I know you care about me and want to help and need me to say what I need so I am now doing that. I need people to come sit with me quietly, letting me talk or cry or just be together as I'm about to possibly receive the most devastating news and don't think it's good that I am alone right now. So if you want to help out by doing that, just send me a note letting me know what day/time is good for you. I'm home the following days/times this week:____________. Thank you so much."  Something along those lines. People want to help but they need to be told very specifically things like "can we just be quiet?" or "can I have a hug?" or whatever it is you need. I find that people left to their own do not know how to just mirror you and what it appears you need and will want to fill the void w/ chatter that , for me - not everyone just me, is not helpful. For some that could help them to distract. I don't want to ignore the elephant in the room of my son's passing. I want them to just be quiet and receptive to letting me speak or cry. You do what's best for you and ask for it. The hospice counselors are amazing.

 

Again, though, I want to hold out to you (not knowing the details of what docs know) that there is still hope and that every day she is here is another day of hope. I hope she receives a miracle. Transplants happen. I know someone who got a double lung transplant. They happen every day.

 

Sending you wishes for peace.

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rbroussard54

Thank you for checking in on me, msmom.

My mom has been supporting me through all of this. She's been checking up on my girlfriend and is there whenever I need her. I'm very grateful for that.

As for my girlfriend, they put her on a medicine that makes her heart pump stronger and that is making her feel better. Also, her arrhythmia has suddenly gone away. The doctors can't explain this sudden, drastic improvement. I believe it is God. Today, she will be getting a second opinion. I am hoping for good news and have mentioned to her about a device called an LVAD that can possibly save her life.

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Again, you are always welcome (and deserving) to reach out and receive any help any of us here can lend.

 

That is awesome news re: her shift in responding!!!!! Awesome. I'm sure you were so joyous to hear that.

 

Here is another thought for you with helping her if she or those advocating her are okay with her some thoughts on it:  doctors in the US are very much becoming collaborative in their work. Not all but many. It is sometimes very easy to get a second opinion from the top docs. Other times it is not. But as they say in basketball - 'can't make the basket if you don't take a shot'.  I know it would seem logical that they might only offer one if they could see her in their office/hospital , and some do still run their practice this way. But others are of the belief that in dire cases they want to help and will take the risk of offering thoughts sight unseen, based on seeing the reports/scans. Cleveland Clinic is the number one hospital in the USA for heart problems/surgeries. Hands down and universally known. So I would start with them asking them if one of their docs would offer to look at her reports and scans and see if there is anything their brilliant minds see that would lead them to think there is an option that has not been tried yet that she is a candidate for.  My thinking which always worked was that I had nothing to lose by asking and everything to gain. When it is life/death people respond well. They want to help. They make exceptions. You can easily go to the web and look up World News Report of Top Hospitals to see the rankings by specialty to see the next top 10 hospitals after Cleveland Clinic so that the same request is made from several so that if some reject helping you have a crack at getting help from one of the others.  Doctors do confer with their peers who are considered experts. Sometimes on their own but sometimes only if asked to do so. It's a personality thing - some are not arrogant and realize they are not all knowing and the ego allows them to reach out. Others are embarrassed to do that. We had both types. And it is regardless of status/brilliance because we had all top docs and some reached out to others to confer and others wouldn't. It's about being brilliant but balanced in the ego to not be so conceited and fearful of looking 'less than' that allows them to call one another. One doc referred to another this way "he doesn't play well with others" when asked if he would confer w/ this top expert (referring to the expert). So you can't predict and never know. The nations top cancer doc actually gives out his cell number!!! 

 

Well that is my thought on something that her family could be doing if wanting and able to reach out for a second opinion - and third would be prudent at this point as she needs all the brains and eyes she can get looking at her case vs. limiting it.

 

sorry I didn't get on sooner (days) to respond with this.  best to you with momma hugs. can't have too many of those.

 

 

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