Accepting "No Cure"

[KimC]

Hi,

I saw my cardio and pulmo on Mon./Tues. and got the most sobering news ... the chest pain has no cure, is pathological and if we can't get it under control with meds, I will be hospitalized for further tests/treatments.

The good news is that my lung function is excellent, despite the recurring bronchitis. My pulmo now thinks the asthma is cardiac-related, something I've known intuitively for months.

The other good news, according to my cardio, is that he's positive that I don't have "fixed" coronary artery disease.

I also started Imdur, a long-acting nitro yesterday and am feeling OK, i.e., no chest discomfort so far. Last time I tried Imdur I felt progressively fatigued but also didn't know the cause of the chest discomfort. Now that I know the cause, I'm willing to stand the fatigue.

My BP was 90/60 yesterday and my docs are wondering if I can I tolerate the meds that control the angina. I've put on some water weight and am forcing myself to take a nap during the day, which helps. Thank God I don't have to work at this point in my life. I can't imagine asking my boss for a two-hour lunch window to catch some Zzzzzzz's!

I know that many people in our community have learned to accept "no cure" as the final diagnosis. My cardio said no procedures or surgery would cure the disease, meds would control the symptoms though.

Any advice, books or thoughts to share that could help me from feeling alone or anxious?

Thanks,

 

[Marguerite53]

Hi.

Hi.

Hi. I was just checking in and saw your post. You are a gallant woman. I cannot imagine the depth of your disappointment, but I can tell you that your choice to weather the reality with acceptance is beautiful.

Keep posting. I know there will be so many more words to come from others.

Warm wishes.
Marguerite

 

[Glenda]

Kim I'm so sorry about your news. Hugs and prayers are coming your way. When I feel all alone in my despair, I have to remind myself to look up. Morning and evening show us the reassuring sign of God's presence. Let God carry the weight of your burden and guide you each step of the way.

 

[Ross]

What may not be possible today, may perhaps be possible tomorrow. Never give up, Never give in. Now teach me how to live those words.

 

[Karlynn]

Kim,
You are a rock. Keep looking for the positive news that I read in your post. And as Glenda says - Look up. The 6 years that I struggled without answers were the most difficult time in my life. It sucks. But children are a blessing because they don't give us much time for self-pity. During that time I had a favorite song, by my favorite artist Rich Mullins. The song is "Stand" and the chorus is: If I stand let me stand on the promise that You will pull me through. If I can't let me fall on the grace that first brought me to You.

It let me know where my strength (as little as it was at the time) came from and also let me know that there was a place for me to seek comfort when the strength just couldn't be mustered.

You remain in my prayers. The drs. may be saying "no cure" right now. But you didn't mention "no hope". Ground yourself with reality, but take the time to fly with hope.

 

[Yaps]

I too have

I too have

ateriosclerosis... with severe claudication, no'cure' is my dx as well..I think I have come to terms with this..and was suffering from guilt that I may have done this(as per Clinton's dx)..but have investigated the link with high homocystein levels ..well docs agree, my **** level last week was 15.. anything over 7-10 is considered dangerous.
As so many in my family haved either died or suffered such debilitating strokes (my aunt in her 30's) we have made a sure bet that it is in our gene's.
Homocystein blocks the absorbtion of vitamins and amino acids,which over the years can cause pre-mature degeneration of the arteries.
Now no matter what , all my children and their children are taking.. fish oil, b-12 vitamins,and folic acid.
I want to be the last of my family to die from this.Stop the cycle.That is my goal.
The mitral valve to my knowledge only my son has inherited, one granddaughter may have it ,echo wasnt clear.
I don't really think about this dx ..unless something draws me to it... I have prepared as much as I can, but we shall see.. Im stubborn
Love Yaps

 

[Eloise]

I was sorry to read this post,and even though I'm new here....those two words "no cure" are horrid,stuplifying,numbing.I would try hard to focus on the solution then,which is medication.Having faced with these two words before, I do a few things...for a whole week I let myself brood/cry/etc for an hour a day.Then I force myself do get at least one thing done,even it's doing dishes.I listen to music and find huge comfort in the song "I hope you dance" (can't recall who sings it)I also keep a journal which I find helpfull too.Good luck to you,I'll be thinking of you.

 

[Nancy]

Kim-

I am sorry to hear that your news is not the best. Many medical conditions cannot be "cured", whatever that means. But they can be controlled either with medications or surgery.

There are so many wonderful combinations of medications available today that weren't available yesterday. Please remember that drugs are being developed as we speak and applications are being submitted for clinical trials as we speak. And special procedures are also being developed.

Joe is a prime example of several medical conditions which cannot be cured. But they are being controlled with medications and some very new ones to boot.

So Ross is right, Never give in, and Never give up. It sounds as if your doctors are taking things seriously and will be doing lots of testing and investigation on what works the best for you.

I hope you fired Dr. Bozo, and these are the "good guys".

 

[Sherry]

Hi, Kim,
I've been following your story for several months now and just have to give you a big <<<<cyber hug>>>>. I wish I had some words of advice for you other than to just stay as busy as you can. My doc is treating me for asthma right now that is probably surgery-related (this many years after the fact), and it really gets me down too. The incessant back and chest pains that go along with asthma are something I never really knew much about. I guess we can all just have faith and think positively that we're still around for our loved ones. My teaching job really keeps me focussed and my mind off the constant discomfort. Are you in a position where you could volunteer at a local school or something? Just an idea. Take care, girl, and know we're all here for you.

 

[bvdr]

Hi Kim,

I'm sorry you are having to adjust yourself to this most unpleasant news. I know how you have fought over these many months to find out what was happening to you and how you so often had to come against those in your life who would have liked to dismiss your symptoms as of a "hysteric" variety.

As hard as it seems, you can learn to live with this and end up having a happy life and be a blessing to those around you. Your children love you and how you go through this will teach them many things. As others have already said, your strength will come from above. We love you here, Kim and want you to know that we are here for you as you find your way.

 

[ericaj]

I understand completely..

I understand completely..

Hi Kim,

I too understand what you are going through.. I also have cardiac related asthma as well as symptoms which are not clearly diagnosed yet or defined well.. My doctors keep running tests and I try to keep plugging along. I do get frustrated -- especially at times like this where I am sick for the 4th time in 2 or less months.. -- But unfortunately all we can do si hope our doctors come up with good solutions and answers and hopefully they can help us.

Take care,

Erica

 

[KimC]

Speechless

Speechless

So many gems in your replies ... I can't even speak right now.

Thank you, thank you, thank you for making me feel "un-alone."

From the bottom of my deep heart --

 

[Gnusgal]

Kim, I just now saw your post and I can 100% relate. I also have been told that there are no more surgical options for me. Now it's just a matter of waiting and trying our best to maintain some sort of quality of life until it's transplant time... Let me tell you, it's HARD. I think I've cried just about every day since finding out. But coming here does help. Knowing that I'm not alone is comforting. You are in my prayers.

 

[Bryan B]

Hi Kim,

I know that "no cure" is a tough diagnosis to deal with. But I agree with some of the others that have mentioned that "no cure" today doesn't necessarily mean "no cure" down the road. I'm having my wires taken out Tuesday, and my surgeon has already said not to get my hopes up that this will relieve my chronic pain. I think he is trying to mentally prepare me in advance for a possible "no cure" scenario. I agree with Ross..."never give up, never give in", and if you figure out how to do that please pass it on to me because I'm having a hard time accepting that I may have to live with this pain indefinitely. I hope the Imdur helps control your symptoms!

 

[Abbanabba]

Hi Kim, wow - that's a tough break, but you have an amazing attitude and that always helps. I guess also KNOWING what the problem is helps...... there's nothing worse than feeling bad all the time and not knowing WHY. It probably won't make the pain any less, but at least you can "deal" with it. I hope the treatment plan they've devised helps to make things easier for you.

Sending best wishes and positive thoughts your way...
Anna : )

 

[Harrybaby666]

Hi Kim,

Hi Kim,

We are both in a tough spot...I have been having to deal with the new diagnosis of Pulmonary Hypertension--when they should have told me a year ago that I have it--and I have to admit that I too, am really having a hard time right now..I try not to let it show, but they have told me that This Pulmonary Hypertension is a major culprit in what has gone wrong with my heart, and the fact that it's a very dangerous disease really makes things worse, because I know deep down inside how it's all going to end up for me. The only thing that I can offer is what I try and remember and employ is that I have all of these wonderful people here on this site who know where I (We) are at one way or another, and that carries me through...I hope that you will know this and that we are all right by your side and especially the almighty god is with us all..Take Care, Harrybaby666

 

[Harpoon]

You can see there's LOTS of people pullin' for ya, including me...



Personally, I don't buy into the "no cure" thing on a general level. There ARE cures, we just don't know them yet....


There is however a LOT to be said for treating symptoms to maintain a "good" quality of life inspite of one's condition. I've got what seems to be an eternal, hacking cough that usually comes up every morning a few minutes after I've gotten out of bed and can come up again, apparently without any reason or trigger, at various times throughout the day. It's got all my doctors baffled and I THINK there are a few different causes for the same cough, including a stomach reaction to the meds I've been on for well over a year and will probably stay on for life.

I haven't quite settled for having a persistant, nagging cough, but I haven't gotten very close to any good answers as of yet either. It's very frustrating.


However, in the grand scheme of things, we all could be a lot worse.

The plan of attack is important. Knowing where you stand and what you're going to do about it is good for drawing strength from, even if it isn't a "resolution" to the problem(s) at hand.


Hopefully the changes you and your doctors are making will help you feel better. Sometimes we just have to be actively looking for ways to adapt to our conditions as they evolve so we can maintain as close to a "normal" life as possible.


It sucks, but can be done and usually done very well.

 

[KimC]

"The plan of attack is important. Knowing where you stand and what you're going to do about it is good for drawing strength from, even if it isn't a "resolution" to the problem(s) at hand."

Agree 100%. I'm a "problem-solver" and tend to approach things as such. I don't want the disease to define my life. I am not the disease.

I already have some limitations and am struggling not to succumb to the depressing feeling that I'm "different" from normal people my age.

But I've learned from sharing my health problems with others that I'm not alone; it's amazing what people will say once you've opened the door. One of my closest friends said that she's infertile -- this news after many people around her have thought that she was too caught up in her physique to have kids!

Thanks again, everyone.

Much love,

 

[Harrybaby666]

Hi Kim

Hi Kim

I know what you mean by feeling different from others our age(I noticed that you and I are the same age except for a few months difference), and it is hard...like today for instance, I have no car at the moment, and I have to struggle to walk over to the store. Well, when I tried to cross the street, some younger kids in a car wouldn't stop as I was crossing the street and actually tried to hit me....they shouted at me to use the (#$%!!#) crosswalk. Well, they made me feel pretty badly because I couldn't walk the extra distance to the other crosswalk to get across the street...Needless to say, I got a wake up call that I am starting to fail...I just wanted to let you know that I know it's not easy....Take Care, and Stay Well... Harrybaby

 

[Harpoon]

Two days a week I have to walk several hundred yards (it might be close to 1/4 of a mile actually, dunno) from one end of a huge and long parking lot to the other and then some to get to one of my college classes. It's an art class so I get to carry a tackle box full of art supplies and a big portfolio case that has my sketchbooks, a drawing board, an 18x24" newsprint pad, and various other odds and ends in it. The thing's pretty heavy and doesn't have a shoulder strap (though I "rigged one" today) so it's a bear to lug around.

My wife has a handicap tag that we hang from the mirror when she and I are out driving around. I've been tempted to use it myself on occassion....


Right now, I sort of force myself not to. I figure if I can walk the distances it's better exercise for me than taking a shortcut and parking only a 100 ft from where my class is. However, that may change once winter sets in. I dunno how well I'll be able to trudge through a cold, snowy parking lot like that.


Finding limitations you didn't have before is frustrating to no end... You really should be able to do it, your mind is screaming that you can, but when you actually try your body says, "no way, no how!" and that's hard to take.

I always take stairs over the elevator when I can. It takes more time and effort now than it used to, but I can still do it and it seems to me that because I still can, even if it is with greater effort, then I should keep doing it that way for as long as I can.... Stopping and taking the elevator seems almost like giving up, in some small way.