Dealing With A Life Threatening Diagnosis that is not FIXABLE.

I am in an altered state of mind lately. I thought I was quite healthy until I was diagnosed with a Thoracic Aneurysm. This rocked my psyche. Don’t know what my priorities are anymore. One thing is for sure, I am vulnerable and need to prepare for a hasty exit.
I know many of us seniors live with this kind of thing, but I was in denial. I know that we could “Be stricken” at anytime, but it took a diagnosis for me to be more convinced.
How do we all come to terms with this? I vacillate between “eat drink and be merry” and going into an extreme prevention mode.
The doctors are not much help. With cancer, even 0 stage, they are all over you, with my diagnosis, all I got was “SEE YOU in a year. There is not much else to do for me, I have nothing that caused this to treat. I am a normal weight, normal blood pressure and no diabetes. Surgery in at an early stage is riskier than the condition, so it is not fixable.
I do think that I needed a better doctor than I had. It is amazing how we can be in a state of denial, and in time, I will probably go into denial about this; it is too hard too handle otherwise.
So, In time, I will get adjusted to a new normal and a new stage of living when you know that you are getting to the final curtain of this drama of life. Good grief, this final act is HARDER than I thought.

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  1. Rose, I really feel for you – it is a terrible situation to try to cope with. Perhaps you should consult another medical resource. Do you have a good relationship with your GP – perhaps he/she can provide some support and guidance. Or perhaps there is a group in your area- or an online resource – where people with the same condition can meet and talk about how they are dealing with their own diagnosis and what support and resources there may be out there.

    In the end I guess all you or any of us can do – and it sounds trite I know – but live each day to the fullest you can – hopefully you will be able to continue to enjoy your daily life with those you love for a long time to come. As my Grandmother used to say ‘none of us goes before our time’ — we each have a day/hour no matter what we do or do not do in this life.

    1. Katelin, thank you for grasping the condition and understanding. We have a first class medical center 350 miles away, and I will try to figure that all out and maybe I will be checked out there in 6 months which is the recommended time between the first diagnosis and the next testing to determine rate of growth.
      the aneurysm has to grow to a critical size in most cases before surgery is done. None of the choices are good. Before I had this condition, I did not know of an aorta aneurysm. Thank you Katelin.

      1. Rose… I really feel for you….have you thought about cannabis oil….I dont know how readily available it is over there….it is really gaining a big following here for all sorts of things from cancer , arthritis, epilepsy…the list is endless…..its controversial but it is gaining a lot of support here.

        1. ozzie, have thought of cannabis, but it is not available to me here. I never heard of cannabis oil, but the thought of rubbing it on sounds appealing. I am not in one of our progressive states. I googled it and hemp oil is available and cannabis is not available. cannabis is illegal in my state for any purpose. Hemp is also illegal but there is talk of legalizing it.

          1. Sorry to hear that….there is so much research about this and it is helping so many people…I get so frustrated that this natural herb is illegal….it has been proven…sorry to go on about this…I know its not helping you…hope all goes well for you..xxx

          2. Ozzie, this reply is to the comment below. I know that you are correct in what you say, but I think the liquor industry does not want to compete with cannabis. People applying pressure on their government is the only way to change things. So passing the word along and ranting may change things. I appreciate your interest.

    2. Goldengirl, everything you say is comforting and you make sense. My GP is NO help. He is “on vacation” when I need him and he has done nothing. I had been trying to find a new one but the good ones don’t take Medicare which is our Government insurance or they are not taking new patients. My state is not a good state in which to be sick. We have no first class hospitals in our state. Some of the states bordering this state do have first class hospitals. Mt condition is fairly rare and many people die before being diagnosed. I cannot complain, I have had good health for a most of my life. I have not been given a prognosis which is part of the problem. Thank you, GG. you are a comfort.

    3. Golden Girl, After some attempts, I have found a new Primary care physician, but my first appointment is in January, but that is not that long. My doctor has not seen or talked to me in months even though I have this DCIS and aneurysm to deal with. I appreciate all your help. You have a lot of good sense and a way with words. Thank you.

      1. That is a good positive step, Rose and hopefully your new Primary Care Physician will turn out to be someone with whom you can feel comfortable discussing your situation and your concerns and, most importantly, provide the necessary support and care. It sounds as if your previous doctor certainly did not have a very ‘caring’ attitude – or sensitivity to the concerns you would obviously be experiencing.

        Stay strong – you are anyway — and take all the support and caring that is offered to you.

  2. Rose, I can only imagine how difficult this is for you, and how the medical issues are always there on your mind, no matter how much you try to focus on other things. GoldenGirl has some very good advice. I truly hope that there is more help for you, Rose. Somewhere there must be other doctors who could give you more of their time, other options perhaps, which could lead to greater peace of mind for you. Please keep us informed.

  3. Get another opinion/diagnosis Rose……I was diagnosed with the same thing about 9 months ago…Got a second check and scan..result,NO aneurysm ! …Could,nt find one !…….Anyway..My mom was diagnosed with a thoratic aneurysm about 50 yrs ago…she lived another 25 yrs and died of a stroke eventually…..You are in good shape and living sensibly…Dont let this throw you and dont panic …… 🙂

    1. cappucino, I appreciate your sharing your Mom’s experience and yours. I did see an aneurysm on an echocardiogram and it was also on a CT scan. It is surprising that you were misdiagnosed, but if the person doing the test measured in the wrong place that might account for it, but usually you can clearly see an aneurysm. Mistakes are made and I am glad your aneurysm was just a mistake. Thank you for your concern and comment.

  4. Hi Rose, I really don’t have much knowledge about your health problem, but I do know you cannot let yourself fall into a state of negativity, easier said than done I know, but you must try and remain positive, the power of positive thinking works for many…….take Capps advice and seek further opinions……..my thoughts are with you……..Positive ones…..xxx

    1. Thank you, Starlette. I have read a lot and still don’t know as much as I need to know. Starlette, being positive always beats negativity. I will remember that and focus on the life that I have. Thank you very much, starlette.

  5. Hi Rose, I can empathize with you. I have been diagnosed with a dilated aorta which I have been told can burst at any time. I, like you, was gobsmacked. I was also diagnosed earlier this year with emphysema from passive smoking AND I HAVE NEVER SMOKED – I was peed off !!! But Rose there is nothing I can do about it but just carry on. I have changed my GP as he prescribed nothing for my emphysema and I will need help with my breathing in the not too distant future. I worked for a General Surgeon years ago and he had many breast cancer patients and I used to make myself sick worrying about getting that, and he said to me one day “Diane stop worrying about that none of us know what will happen in the future – you could walk out of this office and be hit by a truck” He was a very wise man. Keep on keeping on Rose. Take care xoxo

  6. Forever young, if you have an aneurysm “that could burst at anytime, isn’t it time to operate. That is what they do when the aneurysm get to certain size and/or level of risk. There is a degree of an aneurysm rupturing at anytime but the risk is related to size and other factors. I have a little emphysema but it has not progressed much and I was not told that anything about progression. I have not smoked and spent little time in passive smoke. I worked in schools, so smoking was limited. Maybe, you need a better statement about your condition. Thank you for your comment.

  7. I don’t need a better statement about my condition – I am well aware of it and accept it. I don’t want surgery for my dilated aorta – that is my decision. As for the emphysema there is no cure and I have been prescribed an inhaler to help slow the progression. I was surrounded by passive smoking for the greater part of my life, but because I didn’t smoke I never expected to get passive emphysema. If my dilated aorta bursts and I die immediately – that is my wish !!!!!!!!

  8. Everyone that has cancer makes their own decisions how to get treatment. I was told by the prostate doctors I see, as have a large prostate , that I have prostate cancer stage 4. Very dangerous unless I got treatments of radiation and hormone. I went home and prayed for 3 days and told my wife the Lord says he has healed me. So went back and told doctors i wanted no treatments and the Lord has healed me. They were not happy but said we will not see you anymore, That was 6 years ago and and now 85 years old. Doctors at the Air Force base hospital have run many scans and say no prostate cancer can be found and come back in another year if needs arise.