What's Your Ailment?

[fanboy-ish]

Visited my epileptologist this morning.

He’s 99% sure it’s temporal lobe epilepsy, he prescribed another electroencephalogram just be 100% sure.

He diagnosed me with interictal dysphoric disorder, basically a mood disorder that occurs in between seizures, increased my medication dose, even though he’s not sure I’ll be able to tolerate it, in case it’s too much I’ll keep my current dose and add a second medication; he won’t change my medication because it’s the only one that can keep the mood disorder, as well as some parts of my behavior/personality that are due to the epilepsy, at bay.

He also wants me to do another cycle of antidepressants.

He says I’m improving, though, as I’ve been having less seizures than before; however, he clearly told me that, with my kind of epilepsy, it’s very difficult to get to zero seizures, he’s aiming at reducing them to zero or, at least, getting as few as possible and as mild as possible.

I’m lucky I found this doctor, I trust him 100%, and it’s nice talking to him, he understands what I’m going through, he understands things that other people consider borderline lies, exaggerations, excuses or rudeness, he knows I’m not doing things, or behaving in a certain way, on purpose.

 

[Scepticalscribe]

Had an appointment with the ENT Dept this morning, following a series of massive nose-bleeds late last year.

 

[Huntn]

Had an appointment with the ENT Dept this morning, following a series of massive nose-bleeds late last year.

Was anything determined about them?

 

[Huntn]

Chap 8- A day trip to the emergency room. (Just a log, not fishing for sympathy. 🙃)

Yesterday, a little adventure for me. I have been dealing with a Temproral Arthritis diagnosis before that. seeing a Rhumalogist this week to discuss continued treatment… my impression is basically take steroids forever.

In addition for about 2 weeks, my back, right side has been bothering me when sleeping at night, a sensitivity centered on my right waist area, regardless of position, but minimized when sleeping on my stomach. I even changed to sleeping on the floor and a futon. I experienced several bouts of pain, centered on my right side and abdomain. I had an appointment set up with my primary doctor for this week to look at it, but after a significant onset of upon pain upon rising from bed. yesterday, I was worried about an appendicitis and was not going to wait until Tuesday, so drove to a local hospital emergency room.

They CT scanned my abdomen, and I was suprised by the result, a significantly enlarged right kidney with a large cyst in it. The Emergency Room physician tried to admit me into this hospital, but I was told, there was a kidney guy, but not a urologist available that day at the hospital, so they were going to send me to another hospital.

I told him, if that was the case I wanted to go to my primary hospital, (Houston Methodist) 20 miles away. He told me that was a diferent system, and that it would be a drawn out to “get approval“ and if he just put my name in for this Hospital System (HCA) that likely they would send me to a hospital 36 miles away. I told him no.

Plan B was because I was stable, low pain, not debilitated, he could discharge me, as long as I proceeded to my preferred hospital, which we did. This is where things get exciting.

I’m driving a Mini-Cooper which is a small car. On the way over to, I noticed tension building in my side-back, we pulled into a fast food place so my wife could grab a bite, she had not eaten that day, and I barely made it out of the drive through, into the parking lot, where I advised her, she would have to drive the rest of the way due to increased pain in my back.

As I stood up, I barely made it to the passenger side, when what I can only describe as an attack/event hit me with the worst pain I’ve ever experienced in my life. My right side was churning, pulsing with spikes of 10/10 pain, I did not puke, faint, but I may have screamed a little ending up on my hands and knees.

My wife was asking me, for her to drive me or call an ambulance. I said Ambulance, as I imagined something in my guts might explode and a fade to black. Fortunately that did not happen. I remembered that standing up after any discomfort associated with this condition, usually meant relief. So still on my knees. I straightened my torso and hung onto the roof the the car, which made no difference at first but eventually my raging kidney started to calm down.

The paramedics found me hanging on the side of the car, and assisted me to getting to me feet, got me into a stretcher, and by that time, my kidney had calmed down, as the event was over, gave some florinal which was appreciated, and they drove me to the hospital.

The previous hospital had given me a typed report and a CD copy of the CT Scan, which was handed over to the new Emergency Room physician, and now I was at my preferred hospital for the rest of the afternoon.

To wrap this up, of possible interest are the following:

• The initial read from the first ER doctor was this was the largest kidney he had ever seen 2x+large, it was full of cysts, with one particularly large cyst.
• He was not a urologist, but I asked if this condition was operable, and he seemed to think it would result in a likely kidney removal.
• However, at hospital No.2, I was advised that this condition was usually fully operable (after the ER physician consulted with a urologist), that the kidney could be drained, cysts could be removed and maintain kidney function, and it was normally handled as out patient!
• There could be cancer involved, but that remains to be discovered.

So I’m scheduled to see a urologist the beginning of this week to start resolving this issue. Later in the week, I’ll be seeing the Rhumalogist about the Temporal arthritis. I have not been significantly sick in my life,muntil I hit 70…
I’ve been preoccupied, typed this up here first for you, but will be throwing it into the What’s You’re Ailment thread.

A day trip to the Emergency Room yesterday, a little adventure for me. I have been dealing with a Temproral Arthritis diagnosis before that. seeing a Rhumalogist this week to discuss continued treatment… my impression is basically take steroids forever.

In addition for about 2 weeks, my back, right side has been bothering me when sleeping at night, a sensitivity centered on my right waist area, regardless of position, but minimizedcwhen sleeping on my stomach. I even changed to sleeping on the floor and a futon. I experienced several bouts of pain, centered on my right side and abdomain. I had an appointment set up with my primary doctor for this week to look at it, but after a significant onset of upon pain upon rising from bed. yesterday, I was worried about an appendicitis and was not going to wait until Tuesday, so went to a local hospital emergency room.

They CT scanned my abdomen, and I was suprised by the result, a significantly enlarged right kidney with a large cyst in it. The Emergency Room physician tried to admit me into this hospital, but I was told, there was a kidney guy, but not a urologist available that day at the hospital, so they were going to send me to another hospital.

I tood him, if that was the case I wanted to go to my primary hospital, (Houston Methodist) 20 miles away. He told me that was a diferent system, and that it would be a drawn out to “get approval“ and if he just put my name in for this Hospital System (HCA) that likely they would send me to a hospital 36 miles away. I told him no.

Plan B was because I was stable, low pain, not debilitated, he could discharge me, as long as I proceeded to my preferred hospital, which we did. This is where things get exciting.

I’m driving a Mini-Cooper which is a small car. On the way over to, I noticed tension building in my side-back, we pulled into a fast food place so my wife could grab a bite, she had not eaten that day, and I barely made it out of the drive through, into the parking lot, where I advised her, she would have to drive the rest of the way due to increased pain in my back.

As I stood up, I barely made it to the passenger side, when what I can only describe as an attack/event hit me with the worst pain I’ve ever experienced in my life. My right side was churning, pulsing with spikes of 10/10 pain, I did not puke, faint, but I may have screamed a little ending up on my hands and knees.

My wife was asking me, for her to drive me or call an ambulance. I said Ambulance, as I imagined something in my guts might explode and a fade to black. Fortunately that did not happen. I remembered that standing up after any discomfort associated with this condition, usually meant relief. So still on my knees. I straightened my torso and hung onto the roof the the car, which made no difference at first but eventually my raging kidney started to calm down.

The paramedics found me hanging on the side of the car, and assisted me to getting to me feet, got me into a stretcher, and by that time, my kidney had calmed down, as the event was over, gave some florinal which was appreciated, and they drove me to the hospital.

The previous hospital had given me a typed report and a CD copy of the CT Scan, which was handed over to the new Emergency Room physician, and now I was at my preferred hospital for the rest of the afternoon.

To wrap this up, of possible interest are the following:

• The initial read from the first ER doctor was this was the largest kidney he had ever seen 2x+large, it was full of cysts, with one particularly large cyst.
• He was not a urologist, but I asked if this condition was operable, and he seemed to think it would result in a likely kidney removal.
• However, at hospital No.2, I was advised that this condition was usually fully operable (after the ER physician consulted with a urologist), that the kidney could be drained, cysts could be removed and maintain kidney function, and it was normally handled as out patient!
• There could be cancer involved, but that remains to be discovered.
• I have not been significantly sick in my life, until I hit 70. 🫣I get an annual physical, kind of wondering why this was not caught sooner. It could be my worthless primary care physician who was hesitant to actualy examine his patients. 🤔
• I don’t see a urologist on a regulat basis, but maybe I should.

So I’m scheduled to see a urologist the beginning of this week to start resolving this issue. Later in the week, I’ll be seeing the Rhumalogist about the Temporal arthritis Diagnosis.
🫣

 

[Scepticalscribe]

Was anything determined about them?

Yes.

It appears that I have what is described as "a deviated septum", which serves to make me somewhat more prone to this condition.

I have also suffered from sinus troubles since my teens.

Now, hydration (which I have found alleviates my sinus issues) and which I have been diligent about for over two decades - I consume between one and two litres of water a day, and that is not counting freshly squeezed fruit juice and coffee - which was approved and applauded by the specialist - does help; as does Olbas Oil.

A saline spray was recommended, (to use weekly).

Surgery and cauterisation (the latter of which happened with my mother, who suffered from the same problem for much of her adult life - I merely had three explosive nose-bleeds in rapid succession late last year) are not considered necessary in my case.

 

[Huntn]

Chapter 9- Off To The Races.

As you may recall in the last Chapter, I dashed from one hospital to another (Sat 25 Nov) because the first hospital would not accept me (thank goodness) but there was a price to pay, wreathing in pain, howling at the sky, contemplating my soon to be altered existence.

For anyone who says “what the hell, why was an ambulance not taking you?“ The last time my wife rode an ambulence 5 miles to the hospital, it was attempted extortion by the County of $5k, later negotiated down to $2k and when I left the first hospital, there was no significant pain, after the doctor pressed all over my abdomen, and I was stable.

While in the new hospital, my new urologist, Dr. S had conferred with the Emergency Room Doctor, Dr.H and the plan was for me to see him see him on Monday, 27Nov, which I actually managed to do, having to hit the phone, first thing Monday morning, penetrating his office‘s antiquated phone system no one answering, leaving multiple messages. Having them call me back almost felt like a miracle!

The plan in his office was to send out an imaging order for a CT scan with enhanced contrast to the hospital, so the doctor could get a better picture of what was going on in my gut, before pulling out his scalpel. So that week of 27Nov, I went about my business, saw my New primary doctor on Tuesday (28th) and got her up to speed.

Saw my rheumatologist on Wednesday (29th) regarding my Temporal Arteritis*, the plan there is to ween me down off the high dose of Prednisone, to something more healthy without bringing my symptoms (severe headaches, and risk of damaged optic nerve) back.

*I had been calling it Athritis, which is incorrect.

About Wed (29Nov) , I had expected the Hospital to have called me, and while in the Urologist’s office that previous Monday, I had asked the front desk staff about the “imaging order”, one of the girls had it, but was complaining that something was missing, and I actually left there thinking, “ah, they will take care of it”.

So on Wed (29Nov), I called Dr. S’s office 4 times and ended up leaving 4 urgent messages. These messages were urgent, because although I had been given trusty hard core pain management”medicine on the previous Saturday, about Tuesday my abdominal pain had increased to a point where I had to start taking hydrocodone pill every 4 hours and where I could no longer sleep in bed due to pain, where my easy chair had sufficed to sleep in for several nights, it was no longer sufficient to stave off my abdominal side, back pain. In other words things were coming to a boil for a second time. 😳

Then I get an “oops” message from Dr. S’s office the order had been delayed to the hospital. No, not possible? 🤔

I arrive at Thursday (30Nov) morning 4am with acute pain on my right side. Joe, my kidney is very unhappy, but not yet spasing out. That would be the pulsing, undulating, pushing nails out into my cut feeling that freezes me in my tracks. I wake my wife and ask her to take me to the hospital, a 20 mile drive. I recline the seat on the Toyota to about 50 degrees, gingerly climb in and fortunately Joe is semi-satisfied it is not being abused by me.

At the hospital, I get the CT with enhanced contrast, constantly in debilitating “give me a couple minutes” pain as any pressure put on my abdomen based on normal movements sets off Joe. The ER doctor consults with someone and they decide to put a drain (needle, tube, external 600 ml bag) into the “liquid filled” cyst.

I’m lightly sedated in an operating room, am told there will be a slight pinch as a needle is inserted into my side. Almost immediately the pain recedes as the bag starts to fill. Repeatedly emptied about 2.5 liters flows out, like formerly having an extra half gallon milk jug taking up space in my gut pressing up against my kidney.

I’m admitted to the hospital for observation. I have to say I had the best hospital food I’ve ever eaten. The next morning Dr.S. the urologist walks in my room with good news, I don’t have a giant damaged kidney with big cyst inside, but a giant liquid filled cyst that is semi surrounding the kidney and that now that the cyst is draining, relieving pressure on the kidney, the kidney is function is returning to normal! Great news, and they were going to release me from the hospital. The plan is to meet with the urologist, this morning 5Dec and decide on the next step.

Because they had been recording how much liquid was draining from the cyst at the hospital, no one asked me, but I continued to monitor this from home as I continued to empty the cyst bag that I keep in the pocket of my pants. It’s been draining at a variable rate of 22-100 ML per hour. The liquid was red, then over the weekend transistioned to pink, and now is a light tan color, but it still flowing. The doctor had mentioned something about it drying up, but so far it has not. I could easily imagine, the next step is to pluck that sucker out. Not so fast, more to come…

 

[decafjava]

Oh man so sorry to read this, I am glad there is finally something positive now I hope things continue to improve for you.

 

[Huntn]

Oh man so sorry to read this, I am glad there is finally something positive now I hope things continue to improve for you.

Actually I’m not distressed and thanks for the kind words!

 

[OldCorpse]

Wow, reading this thread is quite humbling - it started all the way back in 2014, 9 years ago! Incredible. And the OP is still in charge - another amazing fact. Hope you're doing better these days, Huntn!

It started in my 30's, but the older I got, the less sure I felt of what I knew in a "positive" sense. As a kind of compensation, I understood on a deeper level, what is *not* true. Analogy: imagine there's a treasure buried somewhere in the city. There are strong opinions as to where it is buried - for example "the park" - that's "positive" knowledge, you 'know' it's in the park, so you say I know the treasure is in the park. But say, you've been digging in that park all your life - and now you KNOW that the treasure is NOT in the park, so that's a kind of "negative" knowledge. Now you say, I don't know where the treasure is buried, but I do know it's not in the park.

That's where my knowledge of the world has been going. In the negative direction. I don't know the answer to many questions that a person has in life - and when I was young (teen - 20's), I thought I knew the answer to "the park". Now I say "I don't know", but I do know that what many *think* the answer is, is simply not true. I don't know the answer, but I do know that "your" answer is wrong. That applies to all sorts of areas, including politics. So many of us take a "side" - and think "our" side is right and theirs is wrong. With time, you realize that while certainly their side is not right... your side is not right either; your side has significant flaws too, very significant, so significant it's not worth waving the flag for your side - you won't go over to the other side, but you won't march with conviction for your side either. The certainties drop off, doubt grows.

The side effect of this is loss of faith in "gurus" and "those who know", "authorities". I have studied (out of curiosity) medical topics all my life (although that's not my area of work). I have reached the point where with great sadness and dismay I realize that I very, very frequently know more about an issue or subject than the "specialist" - as I found out with two cardiologists in a row, specialists who are well respected in their field. I knew about certain biological reactions and new drugs being investigated in Europe, and they didn't. It's a very disconcerting situation, when you sit in a doctors office and know exactly what they're going to say (because that's their diagnostic tree), and exactly why it's wrong in this case and exactly why they won't believe you and the appointment is not long enough to educate them, nor is your position to lecture them. So you sit in depressed silence and just go through the motions, so that you can say to your insurance "I consulted with the specialist".

This you realize is true not only in the medical field, but everywhere. The politician doesn't "know better". The lawyer isn't necessarily "right", the car mechanic is just going by the manual and this case is different, the computer geek/programmer hasn't seen your problem before and his "solution" doesn't work. And so on.

In my field (entertainment industry) there's a saying that the screen writer Bill Goldman came up with about people in the industry "nobody knows anything". What he was describing is how there are many so called "smart" executives and producers and programmers and so on, legends and "authorities" and successful operatives who you assume KNOW STUFF. You can turn to them for advice, because they "know". They know what makes a film successful, a screenplay, a musical composition, a song, a story, an acting style etc. - they can predict that it's "going to be a hit". Except, that NOBODY, but NOBODY can. Not a single person has ever been able to reliably predict what will be a hit. They may get lucky this time or the next time, but that's just luck, and in time they'll make a huge mistake. Because the truth is "nobody knows anything". There are no authorities. There's only you, your instinct and your individual responsibility.

Nobody knows anything. No doctor, no matter how famous and respected and Nobel prized can tell you how long you'll live, how much time you have with your cancer, your disease, what will happen with your health. NOBODY. There is no authority.

The key however, is that this must not be based on "blind scepticism". The exact opposite is true. It is based on more knowledge on your part. It is where the famous saying by Socrates comes from "I know that I know nothing". There's this funny anecdote about a guy who was listening to Elon Musk (don't want to offend any fans of Elon Musk!) - here it is:

"He talked about electric cars. I don't know anything about cars, so when people said he was a genius I figured he must be a genius.

Then he talked about rockets. I don't know anything about rockets, so when people said he was a genius I figured he must be a genius.

Now he talks about software. I happen to know a lot about software & Elon Musk is saying the stupidest sh|t I've ever heard anyone say, so when people say he's a genius I figure I should stay the hell away from his cars and rockets."

And that's the key. You don't distrust "authorities" just on principle - like "I don't trust doctors/lawyers/engineers etc.". You don't trust precisely because you have a reason not to trust. You know too much. And realize that they are... wrong! You've been to the back of the restaurant, the kitchen, you know how the sausage is made - unfortunatly, you know, you wish you didn't, so you could enjoy your meal.

And that's where I come across some "diet" or some guru along the lines of the just promoted Dr. Fuhrman, and your eyes glaze over. Not because you generally "don't trust", but because you know too much about diet and many studies over many years, and you see the giant holes in his statements. Provably wrong. There are so many "gurus" out there that people trust for no reason, just because they're "popular" or "an influencer" (lol!). Or on the other side - distrust for no reason. Both attitudes are wrong. "I don't trust vaccinations" - uhmm, OK, but why? And soon you find out, they have zero scientific arguments, or just rely on nonsense from FB or some email, or an "influencer". Informed Scepticism - that's the key.

Sometimes I miss the past, back when I was young and put my trust in "they know better". Today, I realize that it was simply a way to avoid responsibility to do your own study of the subject - and for that matter, how can you do a deep dive into everything - medicine, law, car engines, literature, nutrition, art history, ancient history, economics, social science... etc. into infinity. You can't. You feel forced to rely on "authorities". But you feel terribly sad, when you go to one of those specialists and realize, "the more I know about a subject, the fewer 'authorities' I trust".

You know your body. You live in your body. Your doctor does not live in your body. They may mean well. They went to a great school. They have a fantastic reputation. But they still don't live in your body. Trust your gut, your senses, your lived experience. As the saying goes about a politician who tries to convince a voter that the politician's plan is working "whom are you going to believe, ME, or your lying eyes?". I believe my own eyes. If a doctor tells you "you're cured, fine, it's all in your head" whatnot, remember: you are the final arbitrer of your own health. Putting your trust in some authority may feel good, because someone else is "responsible" and takes the burden of making decisions away from you... it feels nice and warm, until they lead you over the precipice. When you're falling down onto the rocks below, it's too late to say "it was a false comfort! False authority! I should've trusted my feeling in my body!".

Anyhow the older I get, the less I "know".

 

[Huntn]

Wow, reading this thread is quite humbling - it started all the way back in 2014, 9 years ago! Incredible. And the OP is still in charge - another amazing fact. Hope you're doing better these days, Huntn!

It started in my 30's, but the older I got, the less sure I felt of what I knew in a "positive" sense. As a kind of compensation, I understood on a deeper level, what is *not* true. Analogy: imagine there's a treasure buried somewhere in the city. There are strong opinions as to where it is buried - for example "the park" - that's "positive" knowledge, you 'know' it's in the park, so you say I know the treasure is in the park. But say, you've been digging in that park all your life - and now you KNOW that the treasure is NOT in the park, so that's a kind of "negative" knowledge. Now you say, I don't know where the treasure is buried, but I do know it's not in the park.

That's where my knowledge of the world has been going. In the negative direction. I don't know the answer to many questions that a person has in life - and when I was young (teen - 20's), I thought I knew the answer to "the park". Now I say "I don't know", but I do know that what many *think* the answer is, is simply not true. I don't know the answer, but I do know that "your" answer is wrong. That applies to all sorts of areas, including politics. So many of us take a "side" - and think "our" side is right and theirs is wrong. With time, you realize that while certainly their side is not right... your side is not right either; your side has significant flaws too, very significant, so significant it's not worth waving the flag for your side - you won't go over to the other side, but you won't march with conviction for your side either. The certainties drop off, doubt grows.

The side effect of this is loss of faith in "gurus" and "those who know", "authorities". I have studied (out of curiosity) medical topics all my life (although that's not my area of work). I have reached the point where with great sadness and dismay I realize that I very, very frequently know more about an issue or subject than the "specialist" - as I found out with two cardiologists in a row, specialists who are well respected in their field. I knew about certain biological reactions and new drugs being investigated in Europe, and they didn't. It's a very disconcerting situation, when you sit in a doctors office and know exactly what they're going to say (because that's their diagnostic tree), and exactly why it's wrong in this case and exactly why they won't believe you and the appointment is not long enough to educate them, nor is your position to lecture them. So you sit in depressed silence and just go through the motions, so that you can say to your insurance "I consulted with the specialist".

This you realize is true not only in the medical field, but everywhere. The politician doesn't "know better". The lawyer isn't necessarily "right", the car mechanic is just going by the manual and this case is different, the computer geek/programmer hasn't seen your problem before and his "solution" doesn't work. And so on.

In my field (entertainment industry) there's a saying that the screen writer Bill Goldman came up with about people in the industry "nobody knows anything". What he was describing is how there are many so called "smart" executives and producers and programmers and so on, legends and "authorities" and successful operatives who you assume KNOW STUFF. You can turn to them for advice, because they "know". They know what makes a film successful, a screenplay, a musical composition, a song, a story, an acting style etc. - they can predict that it's "going to be a hit". Except, that NOBODY, but NOBODY can. Not a single person has ever been able to reliably predict what will be a hit. They may get lucky this time or the next time, but that's just luck, and in time they'll make a huge mistake. Because the truth is "nobody knows anything". There are no authorities. There's only you, your instinct and your individual responsibility.

Nobody knows anything. No doctor, no matter how famous and respected and Nobel prized can tell you how long you'll live, how much time you have with your cancer, your disease, what will happen with your health. NOBODY. There is no authority.

The key however, is that this must not be based on "blind scepticism". The exact opposite is true. It is based on more knowledge on your part. It is where the famous saying by Socrates comes from "I know that I know nothing". There's this funny anecdote about a guy who was listening to Elon Musk (don't want to offend any fans of Elon Musk!) - here it is:

"He talked about electric cars. I don't know anything about cars, so when people said he was a genius I figured he must be a genius.

Then he talked about rockets. I don't know anything about rockets, so when people said he was a genius I figured he must be a genius.

Now he talks about software. I happen to know a lot about software & Elon Musk is saying the stupidest sh|t I've ever heard anyone say, so when people say he's a genius I figure I should stay the hell away from his cars and rockets."

And that's the key. You don't distrust "authorities" just on principle - like "I don't trust doctors/lawyers/engineers etc.". You don't trust precisely because you have a reason not to trust. You know too much. And realize that they are... wrong! You've been to the back of the restaurant, the kitchen, you know how the sausage is made - unfortunatly, you know, you wish you didn't, so you could enjoy your meal.

And that's where I come across some "diet" or some guru along the lines of the just promoted Dr. Fuhrman, and your eyes glaze over. Not because you generally "don't trust", but because you know too much about diet and many studies over many years, and you see the giant holes in his statements. Provably wrong. There are so many "gurus" out there that people trust for no reason, just because they're "popular" or "an influencer" (lol!). Or on the other side - distrust for no reason. Both attitudes are wrong. "I don't trust vaccinations" - uhmm, OK, but why? And soon you find out, they have zero scientific arguments, or just rely on nonsense from FB or some email, or an "influencer". Informed Scepticism - that's the key.

Sometimes I miss the past, back when I was young and put my trust in "they know better". Today, I realize that it was simply a way to avoid responsibility to do your own study of the subject - and for that matter, how can you do a deep dive into everything - medicine, law, car engines, literature, nutrition, art history, ancient history, economics, social science... etc. into infinity. You can't. You feel forced to rely on "authorities". But you feel terribly sad, when you go to one of those specialists and realize, "the more I know about a subject, the fewer 'authorities' I trust".

You know your body. You live in your body. Your doctor does not live in your body. They may mean well. They went to a great school. They have a fantastic reputation. But they still don't live in your body. Trust your gut, your senses, your lived experience. As the saying goes about a politician who tries to convince a voter that the politician's plan is working "whom are you going to believe, ME, or your lying eyes?". I believe my own eyes. If a doctor tells you "you're cured, fine, it's all in your head" whatnot, remember: you are the final arbitrer of your own health. Putting your trust in some authority may feel good, because someone else is "responsible" and takes the burden of making decisions away from you... it feels nice and warm, until they lead you over the precipice. When you're falling down onto the rocks below, it's too late to say "it was a false comfort! False authority! I should've trusted my feeling in my body!".

Anyhow the older I get, the less I "know".

Chapter 10 should drop soon.

 

[Huntn]

Chapter 9- Off To The Races.

As you may recall in the last Chapter, I dashed from one hospital to another (Sat 25 Nov) because the first hospital would not accept me (thank goodness) but there was a price to pay, wreathing in pain, howling at the sky, contemplating my soon to be altered existence.

For anyone who says “what the hell, why was an ambulance not taking you?“ The last time my wife rode an ambulence 5 miles to the hospital, it was attempted extortion by the County of $5k, later negotiated down to $2k and when I left the first hospital, there was no significant pain, after the doctor pressed all over my abdomen, and I was stable.

While in the new hospital, my new urologist, Dr. S had conferred with the Emergency Room Doctor, Dr.H and the plan was for me to see him see him on Monday, 27Nov, which I actually managed to do, having to hit the phone, first thing Monday morning, penetrating his office‘s antiquated phone system no one answering, leaving multiple messages. Having them call me back almost felt like a miracle!

The plan in his office was to send out an imaging order for a CT scan with enhanced contrast to the hospital, so the doctor could get a better picture of what was going on in my gut, before pulling out his scalpel. So that week of 27Nov, I went about my business, saw my New primary doctor on Tuesday (28th) and got her up to speed.

Saw my rheumatologist on Wednesday (29th) regarding my Temporal Arteritis*, the plan there is to ween me down off the high dose of Prednisone, to something more healthy without bringing my symptoms (severe headaches, and risk of damaged optic nerve) back.

*I had been calling it Athritis, which is incorrect.

About Wed (29Nov) , I had expected the Hospital to have called me, and while in the Urologist’s office that previous Monday, I had asked the front desk staff about the “imaging order”, one of the girls had it, but was complaining that something was missing, and I actually left there thinking, “ah, they will take care of it”.

So on Wed (29Nov), I called Dr. S’s office 4 times and ended up leaving 4 urgent messages. These messages were urgent, because although I had been given trusty hard core pain management”medicine on the previous Saturday, about Tuesday my abdominal pain had increased to a point where I had to start taking hydrocodone pill every 4 hours and where I could no longer sleep in bed due to pain, where my easy chair had sufficed to sleep in for several nights, it was no longer sufficient to stave off my abdominal side, back pain. In other words things were coming to a boil for a second time. 😳

Then I get an “oops” message from Dr. S’s office the order had been delayed to the hospital. No, not possible? 🤔

I arrive at Thursday (30Nov) morning 4am with acute pain on my right side. Joe, my kidney is very unhappy, but not yet spasing out. That would be the pulsing, undulating, pushing nails out into my cut feeling that freezes me in my tracks. I wake my wife and ask her to take me to the hospital, a 20 mile drive. I recline the seat on the Toyota to about 50 degrees, gingerly climb in and fortunately Joe is semi-satisfied it is not being abused by me.

At the hospital, I get the CT with enhanced contrast, constantly in debilitating “give me a couple minutes” pain as any pressure put on my abdomen based on normal movements sets off Joe. The ER doctor consults with someone and they decide to put a drain (needle, tube, external 600 ml bag) into the “liquid filled” cyst.

I’m lightly sedated in an operating room, am told there will be a slight pinch as a needle is inserted into my side. Almost immediately the pain recedes as the bag starts to fill. Repeatedly emptied about 2.5 liters flows out, like formerly having an extra half gallon milk jug taking up space in my gut pressing up against my kidney.

I’m admitted to the hospital for observation. I have to say I had the best hospital food I’ve ever eaten. The next morning Dr.S. the urologist walks in my room with good news, I don’t have a giant damaged kidney with big cyst inside, but a giant liquid filled cyst that is semi surrounding the kidney and that now that the cyst is draining, relieving pressure on the kidney, the kidney is function is returning to normal! Great news, and they were going to release me from the hospital. The plan is to meet with the urologist, this morning 5Dec and decide on the next step.

Because they had been recording how much liquid was draining from the cyst at the hospital, no one asked me, but I continued to monitor this from home as I continued to empty the cyst bag that I keep in the pocket of my pants. It’s been draining at a variable rate of 22-100 ML per hour. The liquid was red, then over the weekend transistioned to pink, and now is a light tan color, but it still flowing. The doctor had mentioned something about it drying up, but so far it has not. I could easily imagine, the next step is to pluck that sucker out. Not so fast, more to come…

Chapter 10- December
Through out this ordeal, regarding my right kidney, there were some pronouncements made that turned out not to be accurate.

• “Enlarged kidney full of cysts”- emergency room doctor after viewing initial CT, when asked by me, the finishing touch, “it will probably have to be removed”.
• “A large liquid filled cyst attached to the kidney”- when first look at by my urologist.

This was later corrected to be a “subcapsular uranoma”.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7930576/

“Subcapsular urinoma is defined as the collection of urine between the parenchyma and capsule of the kidney.”

https://my.clevelandclinic.org/health/diseases/24094-urinoma

The Urinary Tract & How It Works - NIDDK

Describes how the urinary tract works, why it’s important, what affects the amount of urine produced, and how to keep the urinary tract healthy.

www.niddk.nih.gov

Any knowledgeable medical professionals, feel feee to correct me, but in essence a urinoma forms when urine stops flowing from the kidney to the bladder as it should, completely, in total, and instead leaks out into the subcapsular membrane that surrounds the kidney. This can be caused by a blockage, in the kidney or the ureter that is the tube from the kidney to the bladder.

My case is unusual because often this condition is associated with an injury which as far as I know did not occur. However it has been noted on my right kidney a bend, possibly a kink in the ureter, that might have restricted urine flow enough to cause this condition.

The doctor’s plan was to encourage the urine to start flowing back to the bladder as it should. So plan A was to insert a stint from the bladder, though the ureter, into the kidney. This was an out patient procedure, the stent would provide a definitive path for urine flow from the kidney to the bladder. However in early Dec when this was performed, about 20% of my total urine output continued to drain into the kidney bag, fluid coming from the kidney membrane area.

The doctor explained that the bladder can actually provide back pressure to the kidney, and to further encourage drainage, plan A-2 would be to insert a catheter into, yes I’ll say it, my penis 😬 and into the bladder. This procedure, conducted by Nurse Ratchet (kidding) was very painful, as no numbing agent and no warning was given, as compared to a cystoscopy when they examine your bladder with flexible, rod, camera, and use a numbing agent before any hardware is inserted. In this case, I exclaimed “OUCH!!!” and could imagine I heard a chuckle in response.

So over the Christmas holidays I suffered with a tube hanging out of my privates, strapped to a bag on my leg, and varying degrees of discomfort from, burning to occasional razor blades, to being pierced by nails. I even managed to attend a family Christmas gathering where most people knew my condition, thanks to my wife, but were nice enough not to ask me about it. Besides me walking with a limp, it was not obvious that I had 2 tubes coming out of my body. It was easy to stuff the kidney bag into my pants pocket and it not be noticeable.

This catheter achieved what the doctor wanted, my kidney bag stopped filling urine. After 2 weeks, on Friday (Jan5) I went in and had the dreaded catheter removed. It came out easier than it went in. Over the weekend, the kidney bag remained dry. On Monday (Jan8), I had a Cystocope to remove the stint and the bag remains dry. And this coming Friday, I’m scheduled to have the kidney bag removed.

What next? There is more to be done, I’m just not sure at this point. I can’t say, I am cured at this point, but things are looking up. I believe my kidneys will be studied for functionality via CT scan, urine, and blood work. They don’t know why this condition formed, it’s possible, that any blockage was removed, but no blockage was cited. I believe this bend/kink in my ureter will be further examined as something suspect.

So I’ll close this chapter with, don’t forget about my Temporal Arteritis. I’m still working with my rheumatologist, I’ve reduced my prednisone intake from 60mg to 20mg per day, and now they have started me on a scary medication called Actemra, (read the possible side effects) a once a week injectable whose purpose reduces your body’s immune response, to increase the rate at which I can get off the prednisone, or stabilize at a low rate of steroid exposure, and my understanding is to get off the Actemra too.

 

[OldCorpse]

Huntn, I'm glad your kidney did not have to be removed! I recently read an article about how in 2022 they established that 250,000 - quarter of a million - people died as a result of misdiagnosis in the ER - this is easily googlable info. Those are deaths. But there are even more *injuries*, including serious, life altering or life shortening injuries as a result of misdiagnosis in the ER. Throw in the misdiagnosis in the rest of the non-ER medical industry and no wonder that medical practice caused deaths are the third leading cause of death in America.

So being misdiagnosed is hardly surprising. Your doctor - the one you rightly dropped - didn't think anything serious was afoot. Had you trusted him, where would you be today? And the ER recommending something that might result in serious consequences (kidney removal), also not surprising.

As I said before - you must be your own advocate, don't blindly trust any kind of "authority". The odds of misdiagnosis or no diagnosis is extremely high. It kills more people than anything except heart disease and cancer. It injures even more. You go into the hospital, and you're taking horrific chances - like jogging at night on a busy freeway, wearning black.

I'm glad you are alert, Huntn, and hoping things will continue to get better for you.

 

[AhmetRyzen]

I have no broken parts of my body. I hope it was enough.

 

[Huntn]

Chap 11- Feb2024
Kidney- It’s been a couple of weeks since the dreaded catheter was removed. I’m back to using the pool and gym. I can tell it’s been 3 months since I worked out. I had to spend some time remembering how I organized my lap swimming sets as it was not set in writing anywhere.

I’m due to get a CT Scan on Monday to check my kidney and see if it is stable or has reverted to leaking, fingers crossed.

I have occasion noticed some slight aches on my right side, but they are not the same as when I first got symptoms for the kidney issue back in October, discomfort in my lower back while sleeping. I have been working out, and those aches could have something to do with exercise.

Temporal Arteritis- I’ve been on a schedule weening myself off of Prednisone (steroid). I started at 60mg of Prednisone, and am now down to 9mg. Last month I started taking Actemra. The purpose of this medicine is to lower the body’s immune response. Remember Temporal Arteritis is an auto-immune disease, so it’s purpose is to keep the body’s immune response in check while lowering the amount of steroid’s I’m taking. My understanding is that helps you increase the rate at which you reduce steroid consumption. The end game is to get off medicine completely or to remain on steroids at a low amount of daily consumption, as if this was something that might go away and not come back. That remains to be seen.

One shocker is that last year I was with Anthem Medicare PPO and my first 1 month order of Actemra was $250 to me. This year we switched to Aetna Medicare Preferred PPO and the price was substantially higher. No, I did not check the cost of this medicine in advance of switching. It just did not occur to me.

The way it breaks down is that that the manufacturer’s approx cost is $9800 asking price for 4 single use self injection pins, taken once a week. CVS Specialty RX negotiated the price down to $4500, and agreed to pay $3300, leaving me with a $1200 copay.

My understanding this is because medicare pays up to $5k, then you hit the “donut hole” approx $2k. gap in coverage, before Medicare catastrophic coverage begins and at that point, if I understand it correctly, I have to pay 5% of the $4500, which is $225. I’ve told my wife, that if this is incorrect, and next month they want $1200, I’ll pass and revert to just weening myself off Prednisone at a slower rate (with doctor guidance). The entire reason this medicine exists is to speed up the process of getting off of steroids. I asked for financial assistance, and was advised there was none available. Stay tooned.

 

[OldCorpse]

Yeah, the cost of medication is a serious problem. What can be done about it, I don't know. In general, medical costs rise dramatically the older you get. And the closer to the end one gets, the more costly it becomes. End of life care is the most money that you'll ever spend on medical care in your life.

Naturally individual situations differ. If you have a chronic condition (f.ex. diabetes), you can have high ongoing costs regardless of age. But it's just a sad reality that we all (or most of us) have medical issues pile up in our older age. It's true for me too. Then again, it doesn't automatically mean we'll spend money to treat - sometimes we ignore or live with back pain, or some other ailment, and it may not show up in medical costs, but it sure enough is a reality in our daily lives. I have some stomach issues, but I just live with it - I really don't feel like dragging myself from doctor to doctor with zero resolution... when I was younger, I went to several, they were all perfectly useless, so since then, I've just stopped complaining, I just live with it. That's true for many "minor" things, I just don't bother. If you looked at my medical chart you'd conclude that I'm super healthy - the reality is that the chart reflects my lack of trying to get "help", not that I magically got better - because I've had doctors fail at diagnosis/treatment so often I just gave up... now my chart looks like "wow, miraculously cured of all complaints in recent years!".

I'm not saying medical science has made no progress in recent decades. But the chasm between what people need and what medicine can deliver is vast. It's anecdotal evidence, but almost anyone I talk to, has a similar story "I have this issue, but they can't figure it out, so I gave up".

Hope you're feeling better, Huntn... the reason we gather money all our lives, is so that we can spend it all toward the end

 

[Huntn]

Yeah, the cost of medication is a serious problem. What can be done about it, I don't know. In general, medical costs rise dramatically the older you get. And the closer to the end one gets, the more costly it becomes. End of life care is the most money that you'll ever spend on medical care in your life.

Naturally individual situations differ. If you have a chronic condition (f.ex. diabetes), you can have high ongoing costs regardless of age. But it's just a sad reality that we all (or most of us) have medical issues pile up in our older age. It's true for me too. Then again, it doesn't automatically mean we'll spend money to treat - sometimes we ignore or live with back pain, or some other ailment, and it may not show up in medical costs, but it sure enough is a reality in our daily lives. I have some stomach issues, but I just live with it - I really don't feel like dragging myself from doctor to doctor with zero resolution... when I was younger, I went to several, they were all perfectly useless, so since then, I've just stopped complaining, I just live with it. That's true for many "minor" things, I just don't bother. If you looked at my medical chart you'd conclude that I'm super healthy - the reality is that the chart reflects my lack of trying to get "help", not that I magically got better - because I've had doctors fail at diagnosis/treatment so often I just gave up... now my chart looks like "wow, miraculously cured of all complaints in recent years!".

I'm not saying medical science has made no progress in recent decades. But the chasm between what people need and what medicine can deliver is vast. It's anecdotal evidence, but almost anyone I talk to, has a similar story "I have this issue, but they can't figure it out, so I gave up".

Hope you're feeling better, Huntn... the reason we gather money all our lives, is so that we can spend it all toward the end

I’ve spent more money in the last 5 months on medical and seen the doctors more times than in my entire life for serious issues or so it seems. However, in the spectrum of serious medical issues, these 2 issues are relatively inexpensive, and the most expensive single item was $2000 for 2 months of Actemra, while in the Medicare donut hole. The rest of the year as long as I am on this medication, it will be $100 a month. If we were in a place where critical discussions could be had, we could have one about pharmaceutical companies and the price of meds that many people can’t afford, so I’ll resist.

 

[HDFan]

Have one allergy medication which bills to insurance at a bit less than $100K per year.

 

[avro707]

Mine was/is broken femur, where it goes to the hip.

That was a stupid bicycle accident on a slippery surface I couldn’t see back in early 22.

Hospital visit resulted from that and screws inserted to fix it together. It took all of 2022 to heal up. I was on blood thinners (nasty stuff) and couldn’t do much. I also had left side atrophy pretty badly so I ended up way off balance and one leg shorter.

I’m walking again and riding a bicycle but not like I used to. But at least I can.

That one was a long battle.

 

[OldCorpse]

Mine was/is broken femur, where it goes to the hip.

That was a stupid bicycle accident on a slippery surface I couldn’t see back in early 22.

Hospital visit resulted from that and screws inserted to fix it together. It took all of 2022 to heal up. I was on blood thinners (nasty stuff) and couldn’t do much. I also had left side atrophy pretty badly so I ended up way off balance and one leg shorter.

I’m walking again and riding a bicycle but not like I used to. But at least I can.

That one was a long battle.

It all depends on your age at the time of the accident. Falls resulting in hip/leg fractures for older people are often a prelude to terminal decline leading to death within 12-18 months. Part of the reason for the decline is severe muscle loss due to limited mobility that’s a consequence of the injury. It becomes a vicious cycle of sarcopenia, loss of mobility and slow/absent recovery.

If you graph the decline and progressive frailty, it is a series of stepwise drops in the curve. Each decline becomes the new baseline of functionality and you don’t typically see any subsequent INcline, except if engaging in very strenuous physical therapy designed to claw back muscle mass and capability. That unfortunately requires a great deal of dedication and preserverance, and it’s a rare patient who is up for that kind of commitment. What happens instead is you lose muscle, have another accident and lose yet more muscle until you’re in irreversible decline.

It’s different for a younger person, who can bounce back relatively easier, but it’s still recommended that you exercise hard enough to get back to at least your previous baseline.

I had a motorcycle accident in my late 30’s, and was immobilized with two broken hips (and forearms and hands!) for several months and a number of surgeries. Once I got out from the recovery center after half a year, I consciously dedicated myself to physical therapy and an exercise program. I had a great physiotherapist who explained to me what was at stake. So I was super diligent and ended up in much better condition than before the accident, despite all the hardware that’s permanently in my body.

Ever since (some 25 years ago!) I have made sure to never let my muscle mass decline, because I don’t want to get into that spiral. I am on the cusp of becoming officially “old”, and I intend to preserve my mobility and functional strength for as long as I can.

My recommendation: try to get back to your former strength and *more*, however hard it may seem, because you want your baseline to be as high as possible.

Remember, there are three elements to your musculature - muscle mass, muscle strength, and muscle power; each is different and distinct, and all three need to be tended to.

 

[Richard8655]

Per the above 2 posts, I used to be an avid bicyclist, but now not at the level or frequency of before. Even with sticking to bike paths and trails, some road riding and vehicle crossings are necessary. I broke my collar bone (common bike injury) a few years ago and almost got run over by a car at a traffic crossing. IMO, drivers have gotten very careless over the last few years, especially less accommodating of cyclists sharing the road.

As a result and as I get older, I've transitioned to lap swimming. No real stress on bones or joints and practically no chance of injury from an accident. The exercise is as good and to me a better overall workout. I do miss the outdoor scenery, though, as staring at a blue line on the bottom of the pool lane can get a little boring!

 

[fanboy-ish]

Visited my epileptologist this morning.

He’s 99% sure it’s temporal lobe epilepsy, he prescribed another electroencephalogram just be 100% sure.

He diagnosed me with interictal dysphoric disorder, basically a mood disorder that occurs in between seizures, increased my medication dose, even though he’s not sure I’ll be able to tolerate it, in case it’s too much I’ll keep my current dose and add a second medication; he won’t change my medication because it’s the only one that can keep the mood disorder, as well as some parts of my behavior/personality that are due to the epilepsy, at bay.

He also wants me to do another cycle of antidepressants.

He says I’m improving, though, as I’ve been having less seizures than before; however, he clearly told me that, with my kind of epilepsy, it’s very difficult to get to zero seizures, he’s aiming at reducing them to zero or, at least, getting as few as possible and as mild as possible.

I’m lucky I found this doctor, I trust him 100%, and it’s nice talking to him, he understands what I’m going through, he understands things that other people consider borderline lies, exaggerations, excuses or rudeness, he knows I’m not doing things, or behaving in a certain way, on purpose.

It took me a while, the good part of December to adjust to the new dose, but the fun didn't end there.

Early January I got pneumonia (mild case), I had to take a few medicines, one or more of those medicines gave me an allergic reaction that I started treating and the beginning of this month, it's improving, just as soon as I started noticing improvements... piles decided to flare up, so I started this other therapy too.

Yeah, no shortage of fun during the last 4 months.

 

[jz0309]

Mine was/is broken femur, where it goes to the hip.

That was a stupid bicycle accident on a slippery surface I couldn’t see back in early 22.

Hospital visit resulted from that and screws inserted to fix it together. It took all of 2022 to heal up. I was on blood thinners (nasty stuff) and couldn’t do much. I also had left side atrophy pretty badly so I ended up way off balance and one leg shorter.

I’m walking again and riding a bicycle but not like I used to. But at least I can.

That one was a long battle.

broke my femur due to a mountain bike crash almost 11 years ago, got 2 rods into the femur (still have them). 4 or 5 days later I got a pulmonary embolism due to a blood clot in the broken leg. Was put on Xarelto ... 6 months later I was on my mountain bike again, sticking to simple/flat trails, and another 2-3 months later I was back on the trail where it happened. I got off the Xarelto after ~ 6 months and have never experienced issues/symptoms.
I mountain biked more (and harder) afterwards for like 7-8 years, stopped as I developed arthritis in my neck but now ride daily on my spin bike that I bought ~ 3 months after my femur break ...

 

[OldCorpse]

Per the above 2 posts, I used to be an avid bicyclist, but now not at the level or frequency of before. Even with sticking to bike paths and trails, some road riding and vehicle crossings are necessary. I broke my collar bone (common bike injury) a few years ago and almost got run over by a car at a traffic crossing. IMO, drivers have gotten very careless over the last few years, especially less accommodating of cyclists sharing the road.

As a result and as I get older, I've transitioned to lap swimming. No real stress on bones or joints and practically no chance of injury from an accident. The exercise is as good and to me a better overall workout. I do miss the outdoor scenery, though, as staring at a blue line on the bottom of the pool lane can get a little boring!

Good on you that you're exercising, congrats! Taking care of yourself as you age is crucial to having some kind of quality of life as you age.

If I may make a suggestion though - if you have joint problems, swimming is good. However, it is really rather important to note one thing - you still need exercise that strengthens your bones. As we age, bone strength can become a problem (particulary for women!), and osteoporosis and osteopenia can progress despite exercise, if the exercise does not involve actual impact on the bones. Cycling and swimming and such non-impact, non-load bearing exercises are good for the muscles and tendons, and you'd think that it would have good effect on the bones, but it's far more complicated.

In reality, cycling has some benefits for leg bones, but not to the extent you'd think. You actually need to subject the bone to impact or at least load bearing. The shock to the bone, such as runners experience provides a signal to the bone to increase density - although obviously that only applies to leg bones for runners. Running does nothing for your upper body bones, and not much for your spine. Swimming is even worse from that point of view - it really is mostly aerobic exercise (which is super important!) and improves your cardio-vascular and pulmonary fitness, vo-max etc., with some muscle/tendon involvement, but you still need to directly address your muscoskeletal system.

To directly address your muscles, you need load bearing exercises - this doesn't necessarily mean lifting weights, although obviously that is what is mostly associated with anaerobic exercise. Lifting weights is great for your muscles and bones - in the areas you address. But you can accomplish a lot with just bodyweight exercises or incorporate some bands. If you do weight bearing on your legs - it can just be squats, and right there, you've addressed your leg bones and muscles, and depending on the style of squats (including just bodyweight squats), you can address most of your leg muscles. But that does not much for you upper body and trunk - these need dedicated exercise too, for those muscles and bones.

And remember - you need different kind of exercises to address each aspect: muscle mass (and bone density), muscle strength (you need strong bones too, just taking meds to up your bone density is not enough!), and muscle power (plyo).

Finally, you need some balance exercises. This is what mobility is: muscle and bone strength, balance, and neuromuscular conditioning, cardio-vascular fitness and endurance. That's the whole stack.

 

[Richard8655]

Good on you that you're exercising, congrats! Taking care of yourself as you age is crucial to having some kind of quality of life as you age.

If I may make a suggestion though - if you have joint problems, swimming is good. However, it is really rather important to note one thing - you still need exercise that strengthens your bones. As we age, bone strength can become a problem (particulary for women!), and osteoporosis and osteopenia can progress despite exercise, if the exercise does not involve actual impact on the bones. Cycling and swimming and such non-impact, non-load bearing exercises are good for the muscles and tendons, and you'd think that it would have good effect on the bones, but it's far more complicated.

In reality, cycling has some benefits for leg bones, but not to the extent you'd think. You actually need to subject the bone to impact or at least load bearing. The shock to the bone, such as runners experience provides a signal to the bone to increase density - although obviously that only applies to leg bones for runners. Running does nothing for your upper body bones, and not much for your spine. Swimming is even worse from that point of view - it really is mostly aerobic exercise (which is super important!) and improves your cardio-vascular and pulmonary fitness, vo-max etc., with some muscle/tendon involvement, but you still need to directly address your muscoskeletal system.

To directly address your muscles, you need load bearing exercises - this doesn't necessarily mean lifting weights, although obviously that is what is mostly associated with anaerobic exercise. Lifting weights is great for your muscles and bones - in the areas you address. But you can accomplish a lot with just bodyweight exercises or incorporate some bands. If you do weight bearing on your legs - it can just be squats, and right there, you've addressed your leg bones and muscles, and depending on the style of squats (including just bodyweight squats), you can address most of your leg muscles. But that does not much for you upper body and trunk - these need dedicated exercise too, for those muscles and bones.

And remember - you need different kind of exercises to address each aspect: muscle mass (and bone density), muscle strength (you need strong bones too, just taking meds to up your bone density is not enough!), and muscle power (plyo).

Finally, you need some balance exercises. This is what mobility is: muscle and bone strength, balance, and neuromuscular conditioning, cardio-vascular fitness and endurance. That's the whole stack.

Thanks and excelleng advice! Yes, variety and balanced exercise is critical. Though much less than before, bicycling is still on my agenda. Also hiking long distances. You also make a very good point about weight bearing workouts and bone health.

At my age, I see heart health as especially key and for me swimming has the most benefit in that area, more so than the other forms mentioned. I used to have high blood pressure (work stress related), and since doing an hour or more of 5-day/week lap swimming, no longer need meds for that. Retiring also helped.

But again, your points are well taken.

 

[avro707]

Was put on Xarelto ... 6 months later I was on my mountain bike again, sticking to simple/flat trails, and another 2-3 months later I was back on the trail where it happened. I got off the Xarelto after ~ 6 months and have never experienced issues/symptoms.

Oh that’s what I was on too, Xarelto (rivaroxaban). It was somewhat more pleasant than the injections in hospital which hurt like heck.

I’m mostly good now, just weaker on the left side. I’ll get there eventually. The FTP is up at 263w with roughly 60kg, but obviously well short of the 313w I used to have. I can still surprise people on steep hills.

I’m using weights and doing a lot of walking when I can.

During the bad times I just had to keep mind active with movies, books, whatever and friends ringing me up checking on me daily. That last bit helps enormously with coping mentally when you go from very high levels of activity and fitness to losing what you are used to doing.

You just lay down all day and if you aren’t occupied your mind inevitably wanders to the will I be able to ride again, how will my walking be, etc, or just thinking about day by day the fitness you worked hard for slipping away. I guess a lot of athletes go through that when they get a potentially career ending injury. It’s not just the career issue but the daily rituals of training and upheaval of what is normal is a pretty big thing.

When I hear of professional rugby players or others getting the bad injury news I sort of understand where they are at. It’s a big shock.

Of course there is always worse and the big “C” has claimed a number of friends recently.

It’s different for a younger person, who can bounce back relatively easier, but it’s still recommended that you exercise hard enough to get back to at least your previous baseline.

I'm early 40s so not super young but not that old either. I had a very high level of fitness before the accident so that helped make things somewhat easier than they would have been. If I had been overweight (like I used to be in my younger days) I can imagine how much harder things would have been.

I'm back into fairly hard exercise indoors using Zwift and I ride outside on real bicycles a lot but never at the level I used to do, I'm a lot more cautious. I'll push uphill but I don't attack corners or the descents in the way I once did. It just isn't worth the risk. The other limit is that the maximum power isn't there. Where I once had maximum 1240w power, that is now about 550-590w.