Probably far too personal, but here goes...

[InChrist]

Brief (for me ) backstory: I was in the hospital Jul 2-3 this year for what was initially thought to be CHF, congestive heart failure. I have not been able to breathe, I wake up at night gasping and feeling like I'm suffocating. I had sleep apnea surgery in 2004. I've been swollen... hands, feet, face (bushy beard notwithstanding, you can still see the puffiness), tired all the time, no strength, most of the symptoms of CHF.

I get an ECG, EKG, stress test. Mr. Heart is in perfect shape. I even ran for 2-3 mins. on the treadmill. Heart rate and breathing came back to normal within 2-3 mins. Cardiologists' eyebrows went up, jaws dropped. Not bad for a fat guy who's supposed to have CHF. OK, so we find my thyroid is out of control again (hypo, time to adjust medicine).

Fast forward to yesterday (or is that rewind? )...

Follow up with my internist of 20 years, who yells at me because I gained weight. Yeah well, if you can't breathe it's kind of hard to do much exercise. So I yelled back at him. He takes blood for just about every test except pregnancy. I go back yesterday for that follow up. My hematocrit and hemoglobin are entirely too high. I hear him say to his interns "he has polycythemia". He gets onto a FaceTime session with another doctor who is a hematologist and oncologist. Why the eff are you talking to an oncologist? He says to the other doctor "I'm sending him over right now". OK, so I go and see this doctor. He looks at my blood work, asks me a ****-ton of questions, examines me, pokes around my belly. He hits a tender spot and says "ah ha". He says it feels like my liver or spleen may be swollen or there's some other mass he can't define. So I'm going for a CAT scan.

He says that everything is consistent with polycythemia vera. What the @!$%*&# is polycythemia, dammit!?

Polycythemia vera - Symptoms and causes

So, I have these symptoms:

• Itchiness, especially following a warm bath or shower
• Headache
• Dizziness
• Weakness
• Fatigue
• Blurred vision
• Excessive sweating
• Painful swelling of one joint, often the big toe
• Shortness of breath
• Numbness, tingling, burning or weakness in your hands, feet, arms or legs

So yeah... I'm a member of Club C, "C" Is For Cancer; The Big C, The C-Word. My husband is sitting there listening to all this like

• Is it fatal? Only if left untreated. Death by stroke, heart attack, pulmonary embolism.
• How long do I have? Treated, my normal lifespan.
• Can it be cured? No.
• Can it be treated? Definitely.
• What do they do to treat it? Blood thinners (and/or low-dose aspirin), blood-letting, medication to tell the bone marrow to stop over-producing red blood cells.
• What causes it? Genetics, particularly a mutation on the JAK2 and/or TET2 genes (must investigate this further, for knowledge's sake).

So now I know why I've been feeling like ****-on-a-Ritz.

Cancers do run on my maternal side, killing all of them:

• Grandmother, colon cancer.
• Mother, ovarian cancer.
• Aunt #1, leukemia
• Aunt #2, liver cancer.

My paternal side: they were all too nasty and evil to catch anything. People asked me what my father died of. I'd say he got tired of my mother's **** for 53 years, so to get away from her he died.

Seriously, so I put on my battle armor, sharpen my sword, and look forward to getting my strength back.

In my prayers as you go through this battle.

 

[Jainarayan]

It sounds a lot better than it could have been. First you now know WTF it is. Second you know it can be managed, if not cured. Third, it need not shorten your life. So, with suitable treatment you can get your life back. The only snag is these various regimes you need to manage the condition. They do not sound too ghastly or inhibiting.

When I read the first part of your story I thought of my wife's diagnosis with ovarian cancer and the various stages she went through - seven years mostly good quality, before it got her in the end.

The most useful advice we got was some tough love from a surgeon who was himself diabetic. We were feeling sorry for ourselves, after being told the cancer had come back after chemo. He said to us: "Like a lot of other people, you have a medical condition. Manage it." So we did, and soon felt a lot better for taking that attitude.

Good luck.

I’ve heard the comments “I have X condition/disease, it doesn’t have me”.

I was fairly athletic, more than I gave myself credit for at the time. I was a power lifter, mountain biker, runner. There’s stuff I can’t do because of my back surgery, but I’m looking forward to getting back into the gym, going on my road walks/hikes... getting my mojo back.

 

[Jainarayan]

The crazy cure hucksters are always around to prey on the ill.

The conspiracy theorists are always around to say there is a cure for cancer.

It is all nonsense and lies, Yet intelligent people fall for it.

When people are desperate they’ll try anything.

 

[Jainarayan]

In my prayers as you go through this battle.

Thanks.

 

[Twilight Hue]

Brief (for me ) backstory: I was in the hospital Jul 2-3 this year for what was initially thought to be CHF, congestive heart failure. I have not been able to breathe, I wake up at night gasping and feeling like I'm suffocating. I had sleep apnea surgery in 2004. I've been swollen... hands, feet, face (bushy beard notwithstanding, you can still see the puffiness), tired all the time, no strength, most of the symptoms of CHF.

I get an ECG, EKG, stress test. Mr. Heart is in perfect shape. I even ran for 2-3 mins. on the treadmill. Heart rate and breathing came back to normal within 2-3 mins. Cardiologists' eyebrows went up, jaws dropped. Not bad for a fat guy who's supposed to have CHF. OK, so we find my thyroid is out of control again (hypo, time to adjust medicine).

Fast forward to yesterday (or is that rewind? )...

Follow up with my internist of 20 years, who yells at me because I gained weight. Yeah well, if you can't breathe it's kind of hard to do much exercise. So I yelled back at him. He takes blood for just about every test except pregnancy. I go back yesterday for that follow up. My hematocrit and hemoglobin are entirely too high. I hear him say to his interns "he has polycythemia". He gets onto a FaceTime session with another doctor who is a hematologist and oncologist. Why the eff are you talking to an oncologist? He says to the other doctor "I'm sending him over right now". OK, so I go and see this doctor. He looks at my blood work, asks me a ****-ton of questions, examines me, pokes around my belly. He hits a tender spot and says "ah ha". He says it feels like my liver or spleen may be swollen or there's some other mass he can't define. So I'm going for a CAT scan.

He says that everything is consistent with polycythemia vera. What the @!$%*&# is polycythemia, dammit!?

Polycythemia vera - Symptoms and causes

So, I have these symptoms:

• Itchiness, especially following a warm bath or shower
• Headache
• Dizziness
• Weakness
• Fatigue
• Blurred vision
• Excessive sweating
• Painful swelling of one joint, often the big toe
• Shortness of breath
• Numbness, tingling, burning or weakness in your hands, feet, arms or legs

So yeah... I'm a member of Club C, "C" Is For Cancer; The Big C, The C-Word. My husband is sitting there listening to all this like

• Is it fatal? Only if left untreated. Death by stroke, heart attack, pulmonary embolism.
• How long do I have? Treated, my normal lifespan.
• Can it be cured? No.
• Can it be treated? Definitely.
• What do they do to treat it? Blood thinners (and/or low-dose aspirin), blood-letting, medication to tell the bone marrow to stop over-producing red blood cells.
• What causes it? Genetics, particularly a mutation on the JAK2 and/or TET2 genes (must investigate this further, for knowledge's sake).

So now I know why I've been feeling like ****-on-a-Ritz.

Cancers do run on my maternal side, killing all of them:

• Grandmother, colon cancer.
• Mother, ovarian cancer.
• Aunt #1, leukemia
• Aunt #2, liver cancer.

My paternal side: they were all too nasty and evil to catch anything. People asked me what my father died of. I'd say he got tired of my mother's **** for 53 years, so to get away from her he died.

Seriously, so I put on my battle armor, sharpen my sword, and look forward to getting my strength back.

Being someone who is in the heart attack Club , Afflicted with type 2 diabetes, diagnosed with moderate sleep apnea. One deaf ear , need glasses....

....and I'm old to boot! *Yikes*

I feel your pain implicitly. OW!!!!

But you know, take things in stride, do what you need to do, and continue to live the happiest healthiest life you can. Sounds cliche but there is some sound foundation to be had with that type of outlook.

For me I'm alert enough to address my health issues, but not so much I attach my selves to my problems that would take away all the joy that is still out there in life.

Basically chip chip upper lip, and all that.

Life goes on no matter what, and as long as there are still interesting and fun things to do I'm going to be a happy man and strive to have the best coronary artery disease, and type 2 diabetes , and sleep apnea anyone ever had!

Sounds delusional, but there's a method to the madness. Basically don't let the things you can't change get you down , simply because life is life and it's normal once you are able to realize it. =O)

 

[Jainarayan]

Being someone who is in the heart attack Club , Afflicted with type 2 diabetes, diagnosed with moderate sleep apnea. One deaf ear , need glasses....

....and I'm old to boot! *Yikes*

I feel your pain implicitly. OW!!!!

But you know, take things in stride, do what you need to do, and continue to live the happiest healthiest life you can. Sounds cliche but there is some sound foundation to be had with that type of outlook.

For me I'm alert enough to address my health issues, but not so much I attach my selves to my problems that would take away all the joy that is still out there in life.

Basically chip chip upper lip, and all that.

Life goes on no matter what, and as long as there are still interesting and fun things to do I'm going to be a happy man and strive to have the best coronary artery disease, and type 2 diabetes , and sleep apnea anyone ever had!

Sounds delusional, but there's a method to the madness. Basically don't let the things you can't change get you down , simply because life is life and it's normal once you are able to realize it. =O)

I can’t agree more. When I thought it was CHF, because the symptoms overlap, I cried driving home from work, that I don’t want to die. The prognosis for CHF is worse than for this. So there was a real possibility I might have only a few more years, if I was lucky.

I was sitting in the mall this afternoon watching people. I was wondering who was living with what problems. Someone once told me if we all put our problems in a pile, we’d go looking to take our own back.

 

[Shadow Wolf]

Sorry to hear that. Hopefully everything works out well for you. *hugs*

And I keep resisting a colonoscopy. I think I should rethink that policy.

The colonoscopy isn't bad. It's the prep the night before that is awful. But still better than letting something easily caught and treated go on growing until it's too late (I get to have one every few years due to a history of polyps including a pretty big one).

 

[shmogie]

Oh, I’ll have it done. I’m just a stubborn and rebellious Sicilian.

Yes. My first wife died of breast cancer at age 35. When she was told that there was nothing more to be done, she was terminally ill, she began alternate therapies. I knew they wouldn´t succeed, but I didn´t want to destroy her hope.

She died in while we were holding hands.

Starting with these therapies is pure suicide.

 

[Jainarayan]

Yes. My first wife died of breast cancer at age 35. When she was told that there was nothing more to be done, she was terminally ill, she began alternate therapies. I knew they wouldn´t succeed, but I didn´t want to destroy her hope.

She died in while we were holding hands.

Starting with these therapies is pure suicide.

I’m so sorry. Alternative medicine has its place but I don’t think it should be the first line of defense.

 

[Jainarayan]

Sorry to hear that. Hopefully everything works out well for you. *hugs*

The colonoscopy isn't bad. It's the prep the night before that is awful. But still better than letting something easily caught and treated go on growing until it's too late (I get to have one every few years due to a history of polyps including a pretty big one).

Oh I’m not put off by the procedure itself. I’m not wild about the prep. I think it’s stuff called Go-Litely.

 

[Shadow Wolf]

I think it’s stuff called Go-Litely.

Such a cruel and ironic name.

 

[wizanda]

So you see, as @exchemist rightly points out, someone might decide to forego the traditional treatment and actually sign their own death warrant.

Was only trying to suggest Ayurvedic is to put in what the body needs; yet not to worry Judgement Day is soon, and all will be removed from reality anyway.

Increasing our pip consumption, drinking soursop juice, having some weed in our diet (there are legal hemp products globally), and going vegan, are known preventative measures; which will not kill us, instead they just increase the bodies own defence mechanisms.

Added a disclaimer; sorry for offering friendly health advice on this forum, forget people are not friendly here.

In my opinion.

 

[exchemist]

I’ve heard the comments “I have X condition/disease, it doesn’t have me”.

I was fairly athletic, more than I gave myself credit for at the time. I was a power lifter, mountain biker, runner. There’s stuff I can’t do because of my back surgery, but I’m looking forward to getting back into the gym, going on my road walks/hikes... getting my mojo back.

Yes, why not? You may even find that, after your little brush with the Grim Reaper, you appreciate life with a bit more intensity than before, when you could take it for granted. At any rate I am sure you will soon start feeling better from the correct treatment, which will make a huge difference.

 

[Jainarayan]

Yes, why not? You may even find that, after your little brush with the Grim Reaper, you appreciate life with a bit more intensity than before, when you could take it for granted. At any rate I am sure you will soon start feeling better from the correct treatment, which will make a huge difference.

That’s exactly my point!

 

[Jainarayan]

forget people are not friendly here.

I have to disagree with that. There are well-wishes and offers of prayers here from people I often vehemently disagree and debate with. And I think that’s worth more than gold. Ok, that last line was just for dramatic effect.

 

[exchemist]

Was only trying to suggest Ayurvedic is to put in what the body needs; yet not to worry Judgement Day is soon, and all will be removed from reality anyway.

Increasing our pip consumption, drinking soursop juice, having some weed in our diet (there are legal hemp products globally), and going vegan, are known preventative measures; which will not kill us, instead they just increase the bodies own defence mechanisms.

Added a disclaimer; sorry for offering friendly health advice on this forum, forget people are not friendly here.

In my opinion.

You claimed these things could cure cancer. That is dangerous lies.

 

[Vinayaka]

Thanks... best wishes to him too. I worry about that too, I'm 62 years old. And I keep resisting a colonoscopy. I think I should rethink that policy.

I've had 2 of those ... nowhere near as bad as it sounds. Physical symptoms of stress, often what happens first, varies from individual to individual. "Don't get your s.... in a knot" has its origins in medicine I'm sure. That was me. Treat the stress and the physical symptoms dissipate. (Only when it is stress related) Your situation just sounds complicated.

But people really vary on how they treat their physical bodies, and their views on its relative importance. For me, its the house I (this soul) live in, so best to keep it maintained without overly thinking about it.

 

[Jainarayan]

I've had 2 of those ... nowhere near as bad as it sounds. Physical symptoms of stress, often what happens first, varies from individual to individual. "Don't get your s.... in a knot" has its origins in medicine I'm sure. That was me. Treat the stress and the physical symptoms dissipate. (Only when it is stress related) Your situation just sounds complicated.

But people really vary on how they treat their physical bodies, and their views on its relative importance. For me, its the house I (this soul) live in, so best to keep it maintained without overly thinking about it.

I should have had one years ago. I'm sure at my next follow up they'll "suggest" it again, so I'll tell them to give me the script/referral. I'll have to take Uber, since my husband doesn't drive, You can't drive yourself because of the anesthesia. That's probably the single biggest pain in the *** (no pun intended) reason I've been resisting.

 

[Jainarayan]

So yeah... the cancer is under control, hematocrit is good. So why do I still feel like crap? Short of breath, wake up suffocating, have to sleep in the recliner, swollen like a water balloon, gaining weight like crazy, fatigued, dumb as a box of rocks, oh the list goes on.

So I had a CT scan of my chest, abdomen and pelvis. The report says steatohepatitis, aka Non-Alcoholic Fatty Liver Disease. The shortness of breath is because my abdomen is full of fluid, aka ascites. My body is basically poisoning itself. Apparently it’s an easy fix, however, as long as it doesn’t go any further. Change of diet: eliminate white flour, sugars, portion control, more fruits and vegs, legumes, sort of Mediterranean; and slowly start exercising again and lose 50 lbs.

Let’s do this.

 

[Hockeycowboy]

@Jainarayan ,

Best wishes! Find a good park and walk around.