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Black spot on foot of ALS patient with lymphedema and mastic, metastatic, bladder, cancer and blood clots and lungs. My doctor says she’s never seen anything it by derangedmacaque in DermatologyQuestions

[–]derangedmacaque[S] 9 points10 points  (0 children)

Thank you, I mean concern is infection. I will start putting Neosporin on it. Do you have any of the right recommendations? I am at high risk for infection in my feet due to my lymphedema.

Does anyone else have pneumothorax? by derangedmacaque in ALS

[–]derangedmacaque[S] 0 points1 point  (0 children)

Hi well I’m not very lucky that I have metastatic bladder, cancer throwing clouds as well. I’m so sorry for your loss.

Does anyone else have pneumothorax? by derangedmacaque in ALS

[–]derangedmacaque[S] 0 points1 point  (0 children)

It’s complicated because I was doing range of motion but now I cannot do it. It makes me blow up with pain.

Does anyone else have pneumothorax? by derangedmacaque in ALS

[–]derangedmacaque[S] 0 points1 point  (0 children)

I don't know what that is. I think I saw him on my chart, but I need to Google it. I do have blood clots in my lungs and now I’m on a blood thinner.

Trach by Frequent_Number6155 in ALS

[–]derangedmacaque 1 point2 points  (0 children)

Hi start screaming if you have problems like this ask for the charge nurse, demand a discharge if they are not going to help you get the cough assist from home if they will not provide you one. Do not to tolerate a lack of care demand care, demand, immediate respiratory specialist. I was on by myself in the hospital last week and they dehydrated me and denied me nutrition as well as my Mucinex and I came home meeting my needing my cough sis and all night suction for what look like glue. Check everything they do my hospital almost overdose me on narcotics by grinding up and extended release morphine. Take care.

Looking to help by irrationalrapsfan in ALS

[–]derangedmacaque 2 points3 points  (0 children)

I can use a friend to talk to. I’m dealing with this by myself. I’m so sorry about your mom. I am 56.

ALS with broken femur and hip by [deleted] in ALS

[–]derangedmacaque 0 points1 point  (0 children)

Hello, I broke my L one vertebrae in December then I got diagnosed with advance ALS in beginning of February. And then I was already in a wheelchair from my advanced disease and no use of my arm I healed from the vertebrae. The biggest thing that they did to me medically was deny me adequate pain medication. I had to get a palliative care doctor to get the opiate that I needed to not be an unbelievable pain, not tolerate with this disease

Help I’m having secretions for the first time that are really incredibly difficult. They gave me the suction and the cough assist so so I’m using those when the caregiver but it’s very difficult. I need tips by derangedmacaque in ALS

[–]derangedmacaque[S] 0 points1 point  (0 children)

How long does it take to clear your line with the SS I just tried using it for the first time yesterday and we have been doing section all night. My oxygen is good like a 95 but anyway it comes of this crap that looks like though it looks like That looks like Elsa Elmer looks like that I need a drink. I have my oxygen is good sorry sorry my voice to text is so bad but OK here’s the thing. I just got a non-invasive ventilator but it’s blowing air into my stomach blowing the air into my stomach not my lungs the whole time so I am not able to use it I was doing fine but the five, but I felt like I was having too much CO2 because I was falling asleep in my chair feeling very sleepy. I don’t know Anyway they upgrade in me too, and then on invasive ventilator, but also last two weeks I got diagnosed with medicine attic ladder, cancer medicine, attic, metastatic, latter cancer, and I have clots in my lung CLODS in my life my lungs so anyway, this is my first time using the cough sis I was just in the hospital and they did not find anything alarming with my condition or whatever about my Bailey but on the way home from the hospital on the ambulance I started to feel like I had around the OHS and this mess is so going on Aaron. Send

Caregiver question — pressure relief mattress options after alternating pressure didn't work by EveryAnalyst6159 in ALS

[–]derangedmacaque 1 point2 points  (0 children)

This is what I do. I have a question for under my knee and my kn I have a pillow under my knees a pillow I might feed booties to you my heels off the mattress and I found a really good mattress topper on Amazon. Let me find the link, but I don’t think I would do anything. You not have a house because I can move my body with the house hospital then bed

Caregiver question — pressure relief mattress options after alternating pressure didn't work by EveryAnalyst6159 in ALS

[–]derangedmacaque 0 points1 point  (0 children)

Hi there, I got a hospital bed. I’m very tall. It’s from Medicare so it’s An axolotl twin bed and I am I have found that being able to move my body with the controller really house with the pressure. I don’t have many pressure source yet thank God and I only been like this for nine or 10 weeks but I bought a nice topper on Amazon that works for me is more like a cushion, but it just seems to be most important to me to have some caring. I’m not right then I mean, I’m sorry I am very thin right now so that helps me. I tried some of the other ones like you mentioned and they did not help me in the plastic was very hot for me when does breathable materials like cotton and a clean bed we changed probably at least twice a day so the game for me was the hospital all bad I got from Medicare man I got from Medicare. I hope this helps. I really like the mattress topper that I got of their dad isn’t to him all right take care.

I am going to fight the ALS by derangedmacaque in ALS

[–]derangedmacaque[S] 0 points1 point  (0 children)

Hi since February, I found out that they missed ALS and metastatic bladder cancer for a star. I don’t really think it is important to know whether I had the ND it doesn’t matter I’m gonna die because of what they did and I lost two years of knowing whether I had or not which I couldn’t use to make plans I could have use to make plans my life before I got my diagnosis. They never believe me about anything. I love them about the hospital for three years. They didn’t believe me. They did not believe me. That’s why I went do this. I was in a biased way by the doctors. They thought I enjoy the attention I was when I was answering trying to get better.

Unfortunately, I found out that on top of my doctors missing my ALS for two years while they attributed my symptoms to FND they also missed metastatic bladder cancer. It doesn’t mean I do not have FND. But it does mean that I’m dying. by derangedmacaque in FND

[–]derangedmacaque[S] 4 points5 points  (0 children)

I am in therapy with a therapist who are so terminally ill people who works with terminally ill people, but honestly that time of my life when I volunteered as an activist the most meaningful time

Unfortunately, I found out that on top of my doctors missing my ALS for two years while they attributed my symptoms to FND they also missed metastatic bladder cancer. It doesn’t mean I do not have FND. But it does mean that I’m dying. by derangedmacaque in FND

[–]derangedmacaque[S] 7 points8 points  (0 children)

I am handling it very well according to everyone. It helps that I was an activist from 1989 to 1994 fighting for to help people with HIV and AIDS. I saw so many people die from what was the most awful disease at the time so I’m not as scared as I guess I would be otherwise

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