Terminal Illness And Acceptance

[BlueOrange]

I was talking about these topics with some doctors recently. They advise that pretty much everyone needs time. Nobody is ready when they first get the news, but with continued support, they get there.

So, for what it's worth, your reaction is a completely normal healthy-person reaction.

 

[cat-lady]

I'm so sorry to hear that. For me whenever I'm dealing with loss nothing else helps me quite like faith. I lean on prayer and the Bible. That helps give me the peace to still enjoy the little things in life still worth enjoying. I also like to focus on what I can do when all the stuff I can't control gets overwhelming. Sometimes that might just be little stuff but it still helps.

 

[mamachick]

Dear Lionheart,
I was in ER yesterday and thought of the irony of this post. I thought I had a bowel blockage or something and have been really sick past few day. CT of belly said I did not, but blood work showed 5 for likelihood of pulmonary embolism, and since embolism can mimic blockage, they did CT of chest. It revealed end stage COPD and I am not even on oxygen or daily breathing treatment. I had breathing tests months ago and drs said I could not have advanced test because breathing was too bad, but never referred me to pulmonary specialist. In addition, I have a nodule on right lung and also ?Aneruysmal dilation of left pulmonary artery?? I looked that up and keeps showing me pulmonary aneurysm. Now they say to see PCP and get referral to pulmonary specialist.

Admittedly, I have been living on cigarettes and Pepsi since ptsd, but my insurance denies any treatment and I don't qualify for free because of husbands income even though separated off and on and I don't have access.

Please know, Im not looking for sympathy. I just wanted to let you know that I have some processing to do right now for myself. Unfortunately they never did give me a valid diagnosis but now suspect it is flu due to fever and other symptoms.

 

[Lionheart]

@brat17

If I can help support you through this please allow me to, you have been nothing but open, warm, and helpful to me and I'd like to return in kind.

I wish you improved health / total healing,

You are in my thoughts and prayers,

Lion

 

[mamachick]

Thank you so much Lionheart. I may take you up on that too. Right now I am reflecting on the past years and how I have handled them, or not handled them, and have not even had a desire to quit smoking, which of course I sure do now. So some reflecting on things, some processing the information, but also knowing that I need to speak to medical professionals to get a better understanding of what this means. Since 10 yrs ago I had a partial pneumothorax with broken rib I just wonder if it has anything to do with it. Things do not seem real conclusive right now.

 

[Deleted member 541]

@brat17 Please take care of yourself!

 

[mamachick]

My sister brought me medication today and also read the report that says ANEURYSMAL DILATION OF THE LEFT PULMONARY ARTERY. Since I left a message for my family Dr at 9 am and have not heard back, we called the ER who did the report. The secretary said they didn't have the report and to call my dr. Finally a nurse got on the phone and said "we are not permitted to discuss reports with you" . I said, but if I come into the emergency room then your dr will explain this to me right, because all the information that I am finding says that this is an aneurism and sounds serious. She said "that is correct". So If I wish to go sit for hours again and pay another $1000 for third time in 3 days, then I will get an answer. None of their reports are adding up.

Dr even document appearance of throat when he never looked. Much is insignificant, but, I am feeling much like my sister did when she kept being told she had GERD and arthritis and actually had stage 4 pancreatic cancer that metasticised to both lungs and liver. Too tired, too sick, and just giving up. Once finally diagnosed, lived only 6 weeks-finally with palliative care and not in the severe pain she suffered with for nearly a year prior.

As I stated earlier in this thread, I have no fear of dying, just let me go peacefully in my sleep and not with all the pain I have been experiencing. I have pain meds saved up (not for suicide-just over stocked) to help myself for a bit, but sure don't want to be dependent on these asshats. The hospital where my husband is employed has there own health insurance and dictates totally what a patient gets or does not get, including diagnosed. Looking back, last May my pulmonary function showed late COPD and recommended seeing specialist and breathing treatment, but my dr who is also employed at this hospital said no further treatment necessary.

If I was a happy person, I would be really pissed! Just kind of complacent at the time!

 

[Lionheart]

I hope that my words come out right... I never know, I just know that I speak from the heart and mean no harm, so please take these words in the spirit with which they are given....

I wish I could say that I have more faith in doctors, insurance, and pharmaceutical companies but, sadly I don't.:(

I feel that the way you are being treated is entirely non-acceptable and there is no excuse for it!!! Somehow, someone, somewhere, needs to be held accountable for the deplorable practices that you are describing.:arghh;:banghead: *((I am a happy person (generally) and I am pissed at the way you are being treated!!!)).

I once had a doctor tell my ex-wife that she was dehydrated and needed to go home and rest, when I insisted that she be seen by a different doctor, the diagnosis was a rare thyroid disease that was endangering her life. (go figure). hmmph

$1,000 is steep when ya ain't got it and who has the energy to sit and wait for hours on end?. It is like they want you to give up and go away or something and that thought makes me feel very angry!

It just ain't right...you deserve better treatment!!!

@brat17 I am your friend and I will be here for ya thru whatever may come to support / encourage you.

I wish you the best possible health, healing, recovery....

from the heart,

Lion

 

[mamachick]

Your words are always great because they do come from your heart Lionheart.

It makes me angry when I hear stories such as that which happened to your ex wife. I know these practices are just not acceptable and when I hear about them it pisses me off, but after hearing of my husband being their financial man for 36 years and his stories, I know it is just a business. They may be called non profit, but that is the biggest misconception there is. Its where I met him, when all the residents were getting perks from pharm companies and going on skiing and other trips, as well as partying all night working and operating in the morning. (usually residents). I watched them go to respiratory to get some oxygen to sober up (supposedly). I was an outsider and didn't do these drugs but were at parties and events and it was no secret in the 80's. This would not be acceptable now, so they have found a different way to run the business I suppose.

Its been a real up and down day. I waited all day for a call from my family dr. The pain, chills, shakes, fever , nausea, and all returned by 3 or so. The dr office called at 4:30 and wanted to know what I want after leaving a lengthy message. The girl said she would pull ER report and have dr look at it and call me back. I was in the middle of this very ill period and couldn't explain real well while clinging porcelain with cramps. Of course they did not call back today. I treated self with nausea and pain meds and hot bath to warm up and an hour later able to eat a bit. The waves of sickness seem to be getting further apart so that is good, and I am hoping this is flu symptoms or something. However, I told the dr of breathing changes and lung pain since last March when I was hospitalized at this same hospital. He did not want a ct of chest them because of radiation. The truth is this, he was and is a wonderful dr, but the hospital bought him out a couple yrs ago and since this time, he no longer runs his practice, the hospital dictates everything he does. I can see the writing on the wall.

The CFO is a female and I don't have the right word for her in my vocabulary, but she has withheld all mental health treatment for me. My therapist even suggested that I fake addiction to get ptsd treatment-what does that say. Yet she makes about 300K per yr. while screwing employees out of every benefit they ever had. Now everything has big deductibles even with co payments. Nobody can understand their policy. We get no benefit if we go to the competitor, won't even see without full cash payment so there really is no choice. Im not sure how my feelings are mangled, I feel angry, sad, distrustful, remorseful, maybe even some relief in there, definitely fear. Just all over the place.

On another note, my sister brought me 2 different E cigs that she buys in quantity on line. One is called Fling, the other is NJoy. I am using the NJoy and it is not bad but she said she uses a couple a day and they are about $3 each in quantity.

Thank you so much Lionheart. Praying and thinking of you. I feel very close to you in all of this!

 

[Lionheart]

@brat17 I hope things settle down for you and you get the info you need and deserve to have!!! It must be scary to not feel any trust in the system that is supposed to be treating your illness etc.

As for my situation:

My sister has pretty much given up on herself and her life and it really bothers me. However, I might be able to persuade her to use a vape pen and to at least cut down on her smoking. I beleive that depression is leading her thinking / behavior, but there is only so much that I can do for her. I can love and support her but ultimately she must make the big decisions that affect her life.

I must add that I think she and I both need to be medically treated for anxiety/depression before we are going to have much success in stopping smoking. However, I broke my vape pen and need to buy another one. I am thinking I will buy the NJoy vaporizer for my sister and perhaps for myself as well.

Please let me know how your experience goes with these E-cigs...I'm rooting for you. Go @brat17 Go

I have a horrible habit of smoking filtered cigars and drinking mass quantities of coffee throughout the day....this is def not in my best interests, but I suspect will take some real determination to stop. I am switching to decaf coffee and herb tea and am trying to cut down on smoking, but the force of old habits die hard it seems. I will need all kinds of support and encouragement and something else to do besides sit around, over-thinking and smoking cigs etc.

Smoking obviously speeds COPD and hastens an early demise which I know we do not want for ourselves or our loved ones. Perhaps thru this healing journey we can continue to support and encourage one another and fully embrace the life that we have.

sending up prayers,
and sending out healing hugs for you,

Lion

PS: I did go to the website and got a total of 75% off of two vape pens from NJoy, one for myself and another for my sister...its crazy but it costs less to buy a new vape pen than it does to order a new tank (replacement part).

 

[lostforgottensoul]

I think she and I both need to be medically treated for anxiety/depression before we are going to have much success in stopping smoking.

No you don't. I wasn't and am still depressed and have massive anxiety. The vaporizer serves as the psychological thing I do when upset. I just changed what I am psychologically addicted to. And I say psychological because i found 97% of it is just psycholoically needing to hold something that felt like a cig between my fingers. I found as I went on to lessen the cigs (and I quit inside of a week so when I say lessen i mean a pack to 5 the next day to one the next to a few puffs the next) that I could hold an unlit cig and smoke on the vap and was fine. Then eventually I just didn't need to hold the unlit cig (though yesterday found, as suspected, that I do have to hold my vap all day).

but I suspect will take some real determination to stop.

It does, I do agree there that it takes a lot of determination and a ton of will power. But what is more of a determination, or reason to have a ton of determination, then having COPD?

Personally, though, I wouldn't go to decaf first or at the same time, I'd cut out the smoking first then switch to decaf. Because you are addicted to both and doing both at the same time is making it twice as hard on you. Smoking is the most directly impacting on your COPD so Id do that first and be on the vap only for a week or so then start to cut the coffee and drink decaf and tea.

I agree coffee all day isn't good but I don't see it, out of the two, as most important and I think trying to cut off both at the same time is making it all twice as hard and I think this

but the force of old habits die hard it seems.

is true but worse when trying to both aa the same time.

Just a thought. Or a few thoughts.

 

[Lionheart]

No you don't. I wasn't and am still depressed and have massive anxiety.

I am hoping that you are right, I mean, I believe your experience, I just hope and pray that my experience matches yours.

I still think that I need some type of treatment for the anxiety, (esp. when it's bad, and some therapy and continued medication for the depression but I won't wait to stop smoking. I am gonna get started as soon as the vape pen arrives.:)

I appreciate the reminder not to do too much at one time, I will definitely put vaping first.


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