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I’m sitting in the oncology lab with Danny now. They are going to start his chemo today and we are waiting to see if his lab work comes back ok before they give him the drug. I brought the laptop so I would have something to do.
We FINALLY met with the oncologist today. They are talking about starting Danny’s chemo next thursday. I can’t remember the name of the drug they want to use (it was something long and I think it started with a p) but its iv and they said he will have to take it once every three weeks. Right now they are talking about four rounds so hopefully by the time the weather starts to turn around he will be done. They did a chest xray and it shows he still has a pneumothorax from surgery and his pulmonary function test shows that hes back in the toilet. His function now is what it was when he was getting evaluated for transplant. We hope that once this pneumo goes away and hes able to start pulmonary therapy that his function will increase but only time can tell. We are meeting with another oncologist next week just to get a second opinion. I didn’t ask what kind of survival numbers we are looking at since I don’t really want to know.
I suffer from IBS and anxiety which has gotten pretty bad as of late. Before I could manage by taking some time out during the week to do something I enjoy like go on a hike or just sit outside and watch the local wildlife. I also play World of Warcraft to unwind at the end of the day. Now I can’t manage without taking medication which has helped me quite a bit and to my surprise I don’t feel drugged from it. I really didn’t want to take any medication but my normal routine wasn’t helping my stress levels anymore. If you really feel you can’t manage your anxiety anymore you could always try medication and see how it makes you feel. I was very surprised at how well they have worked for me and I feel perfectly normal.
It looks like a recast with tons of dust, eyes that are too big and an ugly fake stone in the forehead.
I got a mysterious call from the health department telling me to come in and get the shot. I think the fire department set it up so that way we could both with (I get the shot and they can say they still didn’t give it to me). I had to drive an hour away to the health department building and wait an hour in a crowded room to get it but I got it. I can’t believe what a fiasco it was to get this stupid shot.
I know making such a big stink about this is putting me on the raidar of the white shirts at headquarters but I don’t care. Its not like I’m asking them to bend the rules for me. I’m asking them to follow the guidelines set forth by the CDC and give me the shot instead of the mist. I deal with at least one suspected swine flu case a day at work and it would be nice to have some kind of protection from them other then dowsing the medic unit down with cavacide after every patient like I do now.
Oh boy have I cause a storm at work over the H1N1 vaccine. My job is giving out the vaccine because we are in a priority group (fire department). They have both the shot and nasal mist forms of the vaccine. I can’t receive the nasal mist because of Danny being a transplant patient but my job will only let me get the nasal mist form of the vaccine. When filling out the papers to get the vaccine its asks if you are the primary caretaker of someone who is immuno suppressed and if you check yes then you have to get the shot. My job is telling me my husbands condition does not qualify since he is not in a “protective environment”. I wrote the CDC and got a letter from them and my husbands doctor explaining that I am not able to get the nasal mist only the shot. My job still refuses to give me the shot and told me that any doctor can write up a letter saying their patients family shouldn’t get the mist blah blah blah. One of my co-workers is in the same boat I am. Her husband is waiting for a double lung transplant and she filled out the papers and GOT the shot. When I brought this up to my supervisors they told me they are not allowed to talk about other co-workers. So now I feel I’m being discriminated against. I have gone all he way up the chain of command and even got my union involved and still they wont budge. I wanted to file a grievance but work is telling me that its not something I can file for. Thankfully I’ve been able to get Danny and Alyssa vaccinated (I pissed more people off doing that lol). I can’t believe what a fiasco it is just to get this stupid H1N1 vaccine! I just can’t believe the government wasn’t prepared for this. Two of Danny’s cf buddies that he talks to online have died this week form the H1N1 flu and so many others are having a horrible time trying to find the vaccine.
This guy is sitting on my work bench collecting dust atm. I so want to finish him but its not gonna happen any time soon. I was working on a tauren costume for halloween too but thats not going to get finished either /pout.
Because he has cancer he can’t get a second transplant. The only how he can get another one is if he can remain cancer free for 5 years. We’ve called the transplant center in pa and they are sending us information to have our records moved there. I’m just so frustrated with it all.
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.
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.
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.
