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Wow, PD-I so wish that they would give you answers. I hope that if he does have an infection, that it will go away with meds, and I hope that the cancer is non-existant. *hugs*
Well Danny is finally home. They are going to give him 3 weeks to heal before we talk about what kind of chemo treatment he will have to do. I know they said it was stage 1 and from what everyone tells me thats good since it can be treated but I can’t help but stress out over it all.
I don’t know what I can say other than that you and Danny are in my prayers. This is MAJOR unfair! (watched a friend die of CF as a kid, Danny beat it WOW, and now THIS!?! 👿 )
So hopkins just called and it seems they sent him home with pneumonia. We may have to take him back in for iv’s now.
purpledoggy wrote:So hopkins just called and it seems they sent him home with pneumonia. We may have to take him back in for iv’s now.
Oh for Christs sake….You’re kidding me….Hopkins saved my dad’s life then tried to kill him again so I don’t put too much faith in them….Even though they’re supposed to be the best at what they do.
Oh sweetie, I wish all the best for you and Danny and Alyssa. Sending HUGE HUGS and warm fuzzies and love and healing energy and happy thoughts and prayers and everything else to make it all better!!!! WE LOVE YOU GUYS!
I’m sending healing thoughts and thoughts that you guys catch a break for once!!!!!!
This is SOOOO UNFAIR for both of you! 🙄
Unfortunately this is how it goes when a spouse is ill–one thing on top of another. Just when you think things are going to settle down something else pops up! Enough to drive you crazy! The advice to take care of you is well given–honestly, how will you hold up and take care of Danny when you’re down? Your mom, his family and whoever is trying to take up your time need to take a major back seat right now. Things have not settled and are still up in the air. My best to you and Danny and I hope things settle down for you both, you get some answers and healing all the way around will begin! [hugs]
aww purpledoggy! Sometimes life really sucks and this seems to be one of those times… I think of you, Danny and Alyssa endlessly and wish there were something more that I could do for you…
twindragonsmum
tdm
So I’m starting to think that Hopkins is trying to hide something from us. From the get go once they did Danny’s surgery and told us he had cancer no one has sat down with us and said “hey this is what we found and this is what we need to do next”. Transplant has pretty much kicked us to the curb. They sent Danny home with pneumonia and now ONE WEEK after being home they brought him in to get a pic line placed and he has started on iv antibiotics. He has been trying to talk with the head of transplant ever since he was sent home. They keep telling us that the doctor will call us and he never did. So when he went in for his pic line placement they said the head of transplant would come talk to him there and guess what…. he never did. So today he called again and was told “hes with a patient but hes going to call you right back” and guess what HE NEVER DID! No one wants to talk to us and tell us what needs to be done. Danny has had to fight just to get something done about this pneumonia that he didn’t get until he was inpatient at hopkins. It seems that transplant figures Danny is a lost cause and they don’t want to deal with us anymore. I think they know they screwed up royal by not doing anything about this “spot” over a year ago that turned out to be cancer. I’m on the verge of calling a laywer. I want a copy of that original ct that said there was a spot 16 months ago that they didn’t follow up on until this year. If it says what I’m pretty damn sure it will say I want to nail them to the wall! No one should have to go through what they have put us through. They treat us like children, that we don’t know whats good for ourselves and that they are high and mighty John’s Hopkins.
I would certainly lodge a complaint. You can also ask a lawyer if there’s anything he/she can do for you. The most important thing is to find a way for Danny to get proper care!
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http://www.sarahjestin.com/feedbacklists.htmAs an unlikely as it may be to happen, you should probably put him up for another lung transplant, especialy if it hasn’t spread….I would demand all the documentation on where this lung came from and if neccessary get DNA testing done to prove that it actualy came from who they say it did (was a pretty young kid if I remember right? In his early 20s? That lung should not have had cancer.) 😡 👿 They’re acting really shady. I talked to my mom about it and she suggested the second transplant. She also sends her sympathies and hopes that everything works out somehow! GIGANTIC HUGS!! WE’RE ALL HERE FOR YOU GUYS!!!
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