Frey Life- Did you know that Mary has CF? Part 2

[ceasg1]

It actually gets worse. Today she was not happy abut the work the particular hospital required (not a huge fan of saying the hospital name in it when it is an evaluation and probably the first of many). They talk abut the schedule and commitment about transplants and she was saying how the schedule was not taking into account about the human aspect but thats part of the transplant. In order to get the best results, she has to stick to the schedule even if she does not feel good both pre and post transplant. She also said how they view things as an insurance requirement while some of the things are for her to have the best chance of success. She says how it is hard to do that if she has a headache and is struggling with the like commitment idea that is needed. A transplant is in some ways a full time job and it seems clearer that she is not ready for the commitment needed for it to have a better chance of success. A 16-20+ hr surgery is a toll on anyone but they need to be in good enough shape for it. Yes, she's sick, but if she is not in an ok physical state for it, there is no chance that she will be able to make it.

She also pulled the nasal tube out once she was allowed to which also makes me feel like she's not ready for the amount of probing that will happen if she gets a transplant. A transplant is not a long surgery and a month later you run around. There are plenty of tests that need to be done because rejection is a serious and real issue. Yes it isn't easy, but she needs to realize that as she gets sicker she needs to do more stuff to care for herself and will also have to go through more tests and stuff.
She says how she'd rather be at a normal gym away from other patients which makes me wonder if she wants the attention for having a coughing fit. I wonder if she sees it as a way to get attention, yet doesn't want to deal with the seriousness of it at the same time. I'm not sure if she's seen it as the threat it is, but more of a way to get stuff from people in a variety of forms.

[lucky181]

In today's video she said she's at her best health right now. Maybe that was compared to everyone else in the workout room or maybe she meant that she doesn't have a cold right now. She's obviously not at her best health or she wouldn't be having the evaluation. I guess watching the other patients working out and coughing upset her.

I don't think she's come to terms yet with the fact that they requested a full transplant evaluation. Peter seems to understand and then she corrects him...."when I need a transplant." I've been watching their videos for a couple years and it seems to me that she just doesn't have the energy that she used to.

Peter mentioned the new drug name: Vertex. I thought she said she could be taking it in the fall but I'm not sure. If so, that leaves a full summer to get sicker.

This situation is a big game changer for them and I'm sure it's tough since they both seemed shocked that she's at this stage right now. I would imagine if she gets on the list, that's when she'd have to be doing PT 4 hours a day and they'd have to move down there. Or should she be doing that much work out at home just to get in shape before being listed?

[WatchandWonder]

It actually gets worse. Today she was not happy abut the work the particular hospital required (not a huge fan of saying the hospital name in it when it is an evaluation and probably the first of many). They talk abut the schedule and commitment about transplants and she was saying how the schedule was not taking into account about the human aspect but thats part of the transplant. In order to get the best results, she has to stick to the schedule even if she does not feel good both pre and post transplant. She also said how they view things as an insurance requirement while some of the things are for her to have the best chance of success. She says how it is hard to do that if she has a headache and is struggling with the like commitment idea that is needed. A transplant is in some ways a full time job and it seems clearer that she is not ready for the commitment needed for it to have a better chance of success. A 16-20+ hr surgery is a toll on anyone but they need to be in good enough shape for it. Yes, she's sick, but if she is not in an ok physical state for it, there is no chance that she will be able to make it.

She also pulled the nasal tube out once she was allowed to which also makes me feel like she's not ready for the amount of probing that will happen if she gets a transplant. A transplant is not a long surgery and a month later you run around. There are plenty of tests that need to be done because rejection is a serious and real issue. Yes it isn't easy, but she needs to realize that as she gets sicker she needs to do more stuff to care for herself and will also have to go through more tests and stuff.
She says how she'd rather be at a normal gym away from other patients which makes me wonder if she wants the attention for having a coughing fit. I wonder if she sees it as a way to get attention, yet doesn't want to deal with the seriousness of it at the same time. I'm not sure if she's seen it as the threat it is, but more of a way to get stuff from people in a variety of forms.

Yep, this latest video just validated everything I said. She is not capable of handling a transplant and all that is required for recovery and staying healthy afterwards. She is such a mess. Listening to her whine and cry while knowing children...little children...who are a cancer patients, living day by day with chemo, tests, needles, words too long to pronounce, and keeping their cool whilst knowing their tiny lives could be stolen from them at any day, not having the comfort of their parents or family around 24/7. They put her to shame. She needs some balls. Truth

[missmaj]

Oh dear - just watched the vlog about day 3 of the evaluation and was really shocked by Mary's reaction. The previous 2 posters above were so spot on. It's an unkind parallel but Mary reminded me of a small child starting school who reacts badly when the teacher tells her she must sit still in class and not run around the room and play. Mary really is miffed that in this hospital she is not "special", that she is not the centre of attention and that she is expected to actually work hard and conform to a schedule. One comment that says it all is when they are in the car at the end of the day and Peter suggests they go and get something to eat and Mary says "Are we allowed?"

[devilishtenshi]

She posted the other day on Instagram that they are saying she will need double lung and liver for sure. So that’s scary. But they are still hoping some new medicine will delay it.

Sorry for the off topic but did y’all hear Chronically Jaquie passed away?? It was really sudden and unexpected

Oh wow! What happened? Where did you find out? I used to watch her up until more recently.

And I think Mary is in denial. She understands she needs a transplant. She even understands her health is going down hill. But she isn’t getting they want her on a list soon if she is being evaluated. I think peter gets it. He seems down to me.

Overall I’m enjoying these videos though because I’m learning more about what an evaluation looks like


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[SWISSMISS]

She is the least 30-year old I have ever seen, even in the face of all this trouble. They were insinuating that people were "not nice" and then said they were "yelled at" for being late. I work in a University Hospital, not unlike Duke....it is common for appointments to run behind. Staff wouldn't yell at a patient, never. We get fired for that type of thing and I've never seen it happen. Her comment, "are we allowed to eat" was more petulant childish pouting. She didn't get her way.....and no, nobody cares if you didn't get Chick Fil A...they are too busy trying to save your life. If she knows it's a quick pace, no time for food, why don't they get some protein bars or whatever? I just kept thinking, hell....this is any day of work for the rest of us.....and these people are saving her life....just go along and be compliant. For once.

Mary is just pissed because she's not running the show. She has the staff beat down at her hospital I'm sure from the years of hassling them. It's a peds ward, and they probably do whatever to just shut her up. Duke isn't going to put up with her crap. Somewhere inside she knows this....which is why she is tripping. You don't get to go to Anytime Fitness to do your PT for a multiple organ transplant. Is she kidding? Everyone coddling her and performing her every whim all these years has not helped her.....she is not prepared for any reality. A transplant is a serious situation that requires 100% dedication.

I don't appreciate her snarky comments about the staff, about insurance, all of that. They don't buy health insurance, we are all paying for this and it's fine but she's not grateful at all. I know it's terrifying and all of that, but if I had a terminal disease and they said get on the mat with the other patients and work out so we can fix you....I'd do it. No questions asked. Duke does more of these than I think anyone....I think they know best. Mary likes to play like she's a doctor...like she knows best. She's just another CF patient in this situation and it's bugging her.

I hope this all works out. She's an asshole to the highest, but nobody deserves to be sick like this. Peter looks like he's going to drop.

[lilienthal]

She posted the other day on Instagram that they are saying she will need double lung and liver for sure. So that’s scary. But they are still hoping some new medicine will delay it.

Sorry for the off topic but did y’all hear Chronically Jaquie passed away?? It was really sudden and unexpected

Oh wow! What happened? Where did you find out? I used to watch her up until more recently.

And I think Mary is in denial. She understands she needs a transplant. She even understands her health is going down hill. But she isn’t getting they want her on a list soon if she is being evaluated. I think peter gets it. He seems down to me.

Overall I’m enjoying these videos though because I’m learning more about what an evaluation looks like


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Jaquies lower intestines herniated and wrapped around her feeding tube what caused her intestines to lose blood flow and subsequently die.


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[RinseandRepeat]

In today's video she said she's at her best health right now. Maybe that was compared to everyone else in the workout room or maybe she meant that she doesn't have a cold right now. She's obviously not at her best health or she wouldn't be having the evaluation. I guess watching the other patients working out and coughing upset her.

I don't think she's come to terms yet with the fact that they requested a full transplant evaluation. Peter seems to understand and then she corrects him...."when I need a transplant." I've been watching their videos for a couple years and it seems to me that she just doesn't have the energy that she used to.

Peter mentioned the new drug name: Vertex. I thought she said she could be taking it in the fall but I'm not sure. If so, that leaves a full summer to get sicker.

This situation is a big game changer for them and I'm sure it's tough since they both seemed shocked that she's at this stage right now. I would imagine if she gets on the list, that's when she'd have to be doing PT 4 hours a day and they'd have to move down there. Or should she be doing that much work out at home just to get in shape before being listed?

I have a very close friend who got an evaluation for a heart transplant at Mazankowski Alberta Heart Institute. In his case, he immediately moved into an apartment very close to the hospital (across the street actually) and waited. He was extremely fortunate in that he waited less than a week for a heart. He is two years post transplant and doing splendidly. My friend always had an amazing attitude regarding his ailment. He did everything that the doctors advised him to do. I totally agree that Mary doesn't seem to comprehend that a full transplant evaluation means that if you are accepted, you're likely going on the waiting list NOW. Peter 'gets' it. You can see it in his eyes. I'm no expert and can only speak to the one experience I've had. Perhaps the rules and protocol are quite different in Canada.

[WatchandWonder]

Interesting Day 4 vlog. It is like Mary just had a wakeup call that she can't even process and "needs time" to understand that 50% of a transplant is physical and 50% is psychological. Yeah, no kidding. Stop being such a whining little brat and buck up. They can easily turn her down in favour of other people who also need livers and lungs that will be able to handle things, not call them names, not panic at every ache and pain, not expect the world to revolve around her or cry because she missed a meal and is just another patient among thousands. What would happen if she did get the transplant, all went well and she comes out of it healthy? Can we finally see this girl grow up? I doubt it. She relies on her illness as an excuse to keep Peter and everyone else wrapped around her finger, waiting on her hand and foot. Will she even be able to enjoy the freedom that comes with breathing normally? Also the doctors don't want to wait long and talking about the small window they have to do such an elaborate surgery in, which neither of them seemed prepared for, but I mentioned it a few posts back. They saw her condition. Someone has to die that is a perfect match for her for both lungs and liver. Does she even have an ounce of compassion for that person and their family? Is she willing to make sacrifices and give up her childishness for their sacrifices? And there is already a list, all over the country, world-wide. So that makes the window even smaller. I totally understand that she could die during surgery, she could die because her body rejects either lung or liver or all of it, or infection, heart attack, stroke, etc.. If she doesn't do it, she will die from CF. But if this is her only chance, she should get on that list ASAP if they accept her and not hesitate. Now they will need to consider moving and he will lose his job as pastor. They have a bumpy road ahead of them.

[lucky181]

It was interesting to learn how rare double lung and liver transplants are.

I found an article written by Duke regarding their lung/liver transplants (12 done from 2000-2016. 8 were due to CF). Average wait time after being listed was 106 days. It sounds like they should start planning on moving down there soon. I understand these are major changes that they weren't anticipating but better to be ready when the time comes or are they thinking they have a year or more. I guess it would depend on the new drug.

I wonder if the vlogs from now on will be filled with transplant info and "processing it while still being human."

[devilishtenshi]

She posted the other day on Instagram that they are saying she will need double lung and liver for sure. So that’s scary. But they are still hoping some new medicine will delay it.

Sorry for the off topic but did y’all hear Chronically Jaquie passed away?? It was really sudden and unexpected

Oh wow! What happened? Where did you find out? I used to watch her up until more recently.

And I think Mary is in denial. She understands she needs a transplant. She even understands her health is going down hill. But she isn’t getting they want her on a list soon if she is being evaluated. I think peter gets it. He seems down to me.

Overall I’m enjoying these videos though because I’m learning more about what an evaluation looks like


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Jaquies lower intestines herniated and wrapped around her feeding tube what caused her intestines to lose blood flow and subsequently die.


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Is this a rare complication? Is this something say Mary has to worry about? Or are the odds slim.


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[kofi]

She posted the other day on Instagram that they are saying she will need double lung and liver for sure. So that’s scary. But they are still hoping some new medicine will delay it.

Sorry for the off topic but did y’all hear Chronically Jaquie passed away?? It was really sudden and unexpected

Oh wow! What happened? Where did you find out? I used to watch her up until more recently.

And I think Mary is in denial. She understands she needs a transplant. She even understands her health is going down hill. But she isn’t getting they want her on a list soon if she is being evaluated. I think peter gets it. He seems down to me.

Overall I’m enjoying these videos though because I’m learning more about what an evaluation looks like


Sent from my iPhone using Tapatalk

Jaquies lower intestines herniated and wrapped around her feeding tube what caused her intestines to lose blood flow and subsequently die.


Gesendet von meinem SM-G900F mit Tapatalk

Is this a rare complication? Is this something say Mary has to worry about? Or are the odds slim.


Sent from my iPhone using Tapatalk

From what I could gather online, in Jacquie’s case the hernia might have been caused because she didn’t use her tube and she tol many painkillers.

[missmaj]

Mary seems to think that she will not need her lung/liver transplant for a long, long time - she even said in today's vlog that she's "fine" now - but from what she and Peter said, the cardiothoracic surgeon seems to want to proceed soon. I wonder if she and Peter will start making plans to move near the hospital given the time it takes for a donor to be found once she's listed, or if they will continue as they are and just hope for the best. I mean, if she were listed soon and got a call to say organs were available, she may well turn them down because she thinks she's not sick enough.

[WatchandWonder]

Mary seems to think that she will not need her lung/liver transplant for a long, long time - she even said in today's vlog that she's "fine" now - but from what she and Peter said, the cardiothoracic surgeon seems to want to proceed soon. I wonder if she and Peter will start making plans to move near the hospital given the time it takes for a donor to be found once she's listed, or if they will continue as they are and just hope for the best. I mean, if she were listed soon and got a call to say organs were available, she may well turn them down because she thinks she's not sick enough.

If she did that she would be an idiot. But it is her life and her death. A pity she is dragging her husband through all her muck along the way. He can't have a decent marriage, kids, job, friends, vacation time. His life is completely limited and he has no autonomy. Glued to her side, cleaning up her puke, patting her hand every time she freaks out, kissing her vomit tasting lips. He has been reduced to nothing more than a mere Mary Minion. What a life.

[Disabledgirl7]

Maybe I missed something, but why would they have done Mary's evaluation right now if she weren't ready to be listed right now? I mean, they do Bunches of tests to determine that she's eligible to be on the list, and she'll only be getting sicker with time- so if they were going to wait weeks or months to list her, wouldn't they have to then test her again to make sure she's still eligible? I don't think they would have done the transplant evaluation now if her need for a transplant is as far in the future as she thinks it is...

[Teauhvana]

Maybe I missed something, but why would they have done Mary's evaluation right now if she weren't ready to be listed right now? I mean, they do Bunches of tests to determine that she's eligible to be on the list, and she'll only be getting sicker with time- so if they were going to wait weeks or months to list her, wouldn't they have to then test her again to make sure she's still eligible? I don't think they would have done the transplant evaluation now if her need for a transplant is as far in the future as she thinks it is...

Exactly. She's in denial.

[Hayley11188]

I just caught up on Eval Day 3 and was so annoyed. Yall are exactly right, she realizes she isn't running the show there and she cant handle it. Like I'm sorry but how does she not hear herself? Saying the hospital that does more transplants than anyone basically doesn't know as much as she does because they do things differently than she likes. Honestly if anything she probably made a ton of snarky comments there and started getting pushback, and her childish mind took that as being "yelled at". What a brat. I've never in my life heard someone complain about transplant evaluation like this. No shit it's hard, it's a life saving procedure. My husbands uncle had a liver transplant last year and had to do SO many things you wouldn't even think of, like having teeth literally pulled because they needed work and he couldn't afford it, and they could pose an infection risk post op. Not one peep from him, because he knew it was his one chance at living. What a joke she is.

[Lurker2017]

Regarding the Day 3 video - why couldn’t Peter leave at some point to get food and bring it back for her? Why does he have to be with her constantly? I’m sure there are plenty of food options in the hospital.

And I have a question about the cross-infection situation in the exercise room - why would it be so different at this hospital in terms of protocol? Is her hospital in Boston being overly cautious? I kind of got her concern about it because clearly she has been told to avoid other CF people. I wish she had explained what their reasoning was because I’m sure she asked.

[JEEv]

I also noticed that on the first day (where she commented that it was only doctors in the cafeteria) that she removed her mask as she walked in! Clearly not that bothered when it suits her.

[JEEv]

I also noticed that on the first day (where she commented that it was only doctors in the cafeteria) that she removed her mask as she walked in! Clearly not that bothered when it suits her. I agree that there is no reason that Peter could not have gone to have got something for them to eat or drink. Maybe they were put off if they had to pay for them both to eat as they are used to the hospitality of her usual hospital. I wonder if Peter will be allowed to set up camp in her room at Duke and what will happen to their pet dog?