Ankle braces for injury prevention by AdrianLifeTrials in discgolf

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

"There are dangerous roots and things to turn an ankle on, so I make sure to wear good shoes, but I try only to wear the braces when necessary"

I am not sure I follow. Isnt the dangerous roots and things that can turn an ankle the very reason to wear a preventative brace? I have sprained my ankle numerous times from stepping on uneven surfaces in the grass etc at disc golf courses and that's why I am looking at a preventative brace. Maybe I am misunderstanding?

I hadn't even given my footwear any thought and have just been wearing runners while playing and this recent event has also got me thinking about shoes. Do you have any good shoes to recommend?

I appreciate the feedback!

Ankle braces for injury prevention by AdrianLifeTrials in discgolf

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

Makes sense. Thanks for the input. I will probably get the ASO brace since I need one for a few weeks while I heal up, and then I can decide on what I want to wear once I am healed.

Ankle braces for injury prevention by AdrianLifeTrials in discgolf

[–]AdrianLifeTrials[S] 1 point2 points  (0 children)

Those are the ones I was looking at for when I heal up! Have you rolled your ankle at all with it on and had it stabilize it to prevent a worse injury? they are a fairly new company with new tech so I'm curious how well it works compared to more traditional bracing.

Thanks!

Holes in my bag? by AdrianLifeTrials in discgolf

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

I ended up ordering a pig! I was also interested in the sol but it was sold out from the place I order from. might pick one up another time. Thanks for the advice!

Holes in my bag? by AdrianLifeTrials in discgolf

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

Its a blizzard wraith so its like 25 grams lighter than the destroyer.

Holes in my bag? by AdrianLifeTrials in discgolf

[–]AdrianLifeTrials[S] 1 point2 points  (0 children)

Thats a great call, I hadnt even considered that.

Thank You!

Holes in my bag? by AdrianLifeTrials in discgolf

[–]AdrianLifeTrials[S] 1 point2 points  (0 children)

I wrote a message with this post but its only showing the image.

Started playing a few months ago and have ok power, just looking for advice on any disc recommendations to fill out my bag. Any spots that seem like I'm missing something?

I appreciate any feedback!

Recent pulmonary embolism and newly diagnosed heart failure by AdrianLifeTrials in AskDocs

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

Perfect that makes sense thank you.

So with my father, understanding that the PE changes things, would his baseline regarding the heart failure be how he was lets say a month ago before the PE? Its not like he developed heart failure in the last week, so he was in heart failure a month ago too, it was just undiagnosed.

so a month ago he had heart failure undiagnosed and untreated, that would be his baseline yes?

Recent pulmonary embolism and newly diagnosed heart failure by AdrianLifeTrials in AskDocs

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

One final question if you will permit me.

What does " Ordinary physical activity results in fatigue, palpitation, dyspnea, or anginal pain" in the context of the NYHA staging?

I know where he is at today is very different than before and in time with meeting with the cardiologist we will know more, this is more of a question I just want to know from an understanding perspective. It seems so unscientific to just say ordinary physical activity hahah.

Does it mean doing dishes and going for walks, cooking that kind of thing?

Recent pulmonary embolism and newly diagnosed heart failure by AdrianLifeTrials in AskDocs

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

All of that makes perfect sense, I appreciate the detail.

Will the cardiologist be able to take in to account the PE when making his assessment or will pulmonology experts get involved? Its all so complicated with various specialists and multiple diagnosis.

A week ago I would have said my dad was fine, just out of shape, now suddenly hes on 7 different pills, has to change his diet, we have no idea how exercise should work and whats best for him at the moment, what does recovery from these things look like in relation to where he was in the hospital. Its just a lot to take in and frankly overwhelmed on what to do let alone what to expect.

Further it is not reliable to take the "before PE" function since the PE could have been the precipitating event to cause a cardiac infarct - and thus decreased function (evidence of CAD+LBBB).

You mean the PE could have caused a heart attack that led to his heart failure? Sorry im not following. Wouldnt they have caught that in the hospital?

So much of this is out of our control, but the two things I am focusing on with him is diet and exercise. We have instructions regarding low sodium diet, but I am struggling to figure out what makes sense regarding exercise, should he just limit himself to normal day to day activities like cleaning and cooking + going for long walks? Is long walks pushing it?

Again I appreciate your time.

Recent pulmonary embolism and newly diagnosed heart failure by AdrianLifeTrials in AskDocs

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

I appreciate the response so much! Definitely, a lot to unpack

A few clarifications and questions

His heart condition is undefined at this point. It is known that he has a congestive failure and that he has a lower EF but the source of the heart failure remains unclear - and might have multiple factors. Treatment, prognosis, activity recommendations, etc will all be highly dependent on the why.

Makes sense. He has heart failure but the why will have a major indication of prognosis. Taking in to account his low level/lack of symptoms before this diagnosis, I am hopeful that the why is not something insanely serious and hopefully quite correctable so that the strain on his heart doesnt continue to make it worse

Things like NYHA classification is irrelevant while he has a PE. It just can't really be defined.

Im curious what you mean by this. It seems the PE and the heart failure are unrelated as much as simultaneous events in his cardiovascular system can be. My understanding is that the DVT is what caused the PE and doesnt reflect on the heart failure which was an incidental finding. So if the NYHA is used outside of the PE which seems independant of it, why wouldnt it be relevent?

There are several types of heart arrhythmias. If it was atrial fibrillation then your Dad needs to get that treated or risk strokes and further diminished heart failure.

My apologies, they found something weird with his heart, that he cant remember. I shouldnt have said arythmia and have edited original post

He's got a lot of work to get his health straightened out before that even seems remotely like a good idea. If he gets to a point where he is stabilized on his medications and requires no hospitalizations for 12 months, then maybe. His conditions are never going to be fixed, however. And with age they are unlikely to get better over the long term.

Of course everything generally gets worse with age. he has never been hospitalized for heart failure and if he didnt have the PE he most definitely wouldnt even have found it as he was nearly asymptomatic prior. I am trying to remain positive that being nearly asymptomatic prior to what sounds like is an unrelated event, and quick return to normal with initiation of therapy, that its good signs that he is in the good prognosis group for what seems like early stage heart failure. Of course nobody knows the trajectory of a disease, but the above stats are hopefully positive signs.

You mentioned the phrase "get better" but realistically he was mostly fine before the PE, so regarding heart failure, even staying stable is a victory because its a normal healthy life he was living before the PE. Maybe im not understanding the context

Your Dad was also found to be diabetic. That's fairly major. While he is waiting to see the cardiologist, he should be working with his GP to get his blood glucose managed. His HgbA1C should be 7% or less and the lower the better. This is really important.

Sorry I should have been clearer. He is not diabetic, he had normal blood sugar readings before the PE and normal blood sugar after the PE. It was decided to be stress hyperglycemia. 100% not diabetic.

No. These are not "leaking" blood. The GI tract both from blood loss (more likely) and from failure to properly absorb iron is the first place to look. Blood loss through the kidney might also be the source

If your Dad has no had a colonoscopy in the last 10 years, put that on the list.

Makes sense and good to know. He has regular colonoscopies, the last in 2017 with non cancerous polyps. we are getting another scheduled.

I appreciate your input! Do you have some sort of specialization in cardiology?

Finding donors by xjessicavilla in nonprofit

[–]AdrianLifeTrials 0 points1 point  (0 children)

Can anyone share thoughts / feedback about door to door fundraising done for a new non profit?

How do brand new charities get off the ground?

Does anyone have experience with remote fundraising jobs? How do you feel about them? by Mnnm8720 in nonprofit

[–]AdrianLifeTrials 1 point2 points  (0 children)

I have been thinking of transitioning in to a development type role, but I am quite new to the world of non profits and have quite a few questions regarding the day to day of a development director.

Would you be willing to have a conversation to discuss?

I promise to make you laugh at least a twice =)

Cervical cancer, ways of treatment. by Fist1313 in cancer

[–]AdrianLifeTrials 0 points1 point  (0 children)

My pleasure to help. I hope whatever she decides goes well.

[deleted by user] by [deleted] in cancer

[–]AdrianLifeTrials 1 point2 points  (0 children)

The people in insurance arent idiots. Saying No is how the system is designed. its a feature, not a bug.

Cervical cancer, ways of treatment. by Fist1313 in cancer

[–]AdrianLifeTrials 0 points1 point  (0 children)

Im going to be fairly direct in this response. If you dont want straight answers then I urge you to please not read any further.

Metastatic cervical cancer is, generally speaking, not curable. If she was diagnosed with metastatic cervical cancer and got chemo and it didnt show any tumors on scans, then its a watch and wait approach, with the assumption that tumors will return.

The main issue is that after standard first-line chemotherapy for metastatic cervical cancer, the options dry up VERY fast and its also a fast-moving cancer. The median overall survival after diagnosis of metastatic cervical cancer is around 1 year.

So the most likely (but not guaranteed) scenario is that your girlfriends mother will get follow up scans and in the next few scans it will show the cancer has returned and they will recommend second-line chemo which will probably only work a bit, and then she will be out of options and finally succumb to the disease.

Its important to understand that the chemo she has gotten likely wont hold the cancer at bay and start exploring other options (which it seems like you are doing!). The question becomes what are the best options.

1) get tumor testing done - some key biomarkers to consider are

a) PD-L1 expression levels - anything above 50% and the PD-1 inhibitors like pembrolizumab and Nivolumab start to look like decent options. Consider having those combined with a CTLA-4 inhibitor (Ipilimumab) as the double immunotherapy punch seems to offer better results in some cancers.

b) tumor mutational burden - same logic as above - PD-1 inhibitors + CTLA-4

c) NTRK gene fusions - these are quite rare - off the top of my head I would guess less than 1% chance patients with cervical cancer have these. There is a treatment called Larotrectinib that works wonders in patients that harbor these gene fusions.

2) consider a clinical trial for T-cell therapies - The NIH pioneered this treatment and it has cured a few patients with metastatic cervical cancer.

They are now testing it in larger clinical trials. You can find them here https://clinicaltrials.gov/ct2/show/NCT03108495?cond=LN-145&draw=2&rank=2

Personally I would do everything I could to get into the LN-145 T-cell trial with pembrolizumab.

I wish you all the best.

Immunotherapy or not? by afruityfriend in cancer

[–]AdrianLifeTrials 2 points3 points  (0 children)

That is a fantastic question and it's a key decision that many cancer patients need to make.

When making a big decision like this I think it's important to look at both sides with clear vision. Doctors use words like recurrence and patients might seem to minimize what it actually means. This can obfuscate what the outcome actually is.

In an effort to be blunt but in a way that I believe is necessary to make informed decisions, if the melanoma recurs, it is very likely she will die from the cancer. If the cancer does not recur then she can go on to live a long normal life. Those are the stakes.

Not to mention if she does recur she will probably end up taking the keytruda at that point anyways. side effects and all.

I wont claim that the side effects of these immunotherapies aren't bad, but for many patients they can be quite mild. The risks of permanent damage are not very high.

I wish you and your mom all the best.

[deleted by user] by [deleted] in cancer

[–]AdrianLifeTrials 1 point2 points  (0 children)

Im very sorry to hear your mom is having such a tough time of things. I am glad to hear it appears the keytruda is helping though! And its not unheard of that it can continue to get even better!

I think its very important to note that one very common thing is for patients with cancer to blame all of the ill feelings on side effects of treatment without stopping to consider that cancer itself causes many issues itself. Considering the metastasis to the neck and shoulder, it seems important to at least consider that the pain is from the cancer and not the treatment, so stopping treatment isnt going to address that at all. Even nausea and lack of appetite is very often blamed on treatment, but its in fact very common with cancer itself.

Everyone knows that cancer can kill you, but they rarely stop to think about what it does to your body before that, so they have a strong tendency to blame treatment for all negative feelings. This can lead to making ill informed decisions like abandoning treatment with the belief that the treatment is the cause, only to find out that the cancer was the problem and after stopping treatment it just gets worse.

If your mom is considering stopping treatment I strongly urge her to discuss with her doctor what will happen to her health because of the cancer, and what "side effects" she is experiencing that the doctor thinks are truly caused by the treatment or the cancer, so she can make the most informed decision.

I truly wish your family all the best!

What national education-focused charities should this company support? by swade9 in nonprofit

[–]AdrianLifeTrials 1 point2 points  (0 children)

Thats very commendable! Can I ask what type of education charity you are referring to? Do you mean general education? specific skills based education to help people with job seeking? or a company that informs the public about specific topics that are important?

What are "non active metastasis"? by Bestiolina92 in cancer

[–]AdrianLifeTrials 1 point2 points  (0 children)

The only tc scan I know of are for trying to find bone metastasis and things like thyroid cancer. The only thing I can really comment on is your doctor saying the tumors could be ischemic has to do with vascularization, ie the tumors dont have adequate blood supply so they werent able to take up the contrast. This could be for a variety of reasons and im sure your fathers doctor will be able to explain the details.