let’s put the congestion back in congestive!

November 12, 2012 at 2:20 am (angina, defibrillator, end stage congestive heart failure, gratitude, heart failure and exhaustion, how does it feel to die, living with dying, symptoms of pulmonary edema, sypmtoms of pumonary hypertension) (, , , , , , )

after our trip to the coast i came back with an additional 13 pounds of fluid in my body.  i feel like a balloon that has been inflated beyond capacity. tie a string to my toe and put me in a parade! of course i would never fly with all that extra weight. not like i am gonna blow away here anytime soon.  day after day, one reason or another i have not taken the meds to help.  the fluid pill makes me itch from the inside out. it feels like i could just scratch my skin off to get to where the darn itching is.  my dr. has even given me meds to counteract this effect. there are other times i itch like this and it is just the combination of meds i take along with the disease.  all that can be done to help has been. this is just a case of it is what it is.  last night after a great day out i decided to bite the bullet and take the fluid pill. it is much stronger than the lasix which is the first prescription most get.  this will leave my skin dry and even cause some joint pain but i will be able to breathe better.  so here i am this morning 5 lbs lighter. this means, and i already knew this, that i will need to go through this one more time to get back to what is normal for me.

i am not talking about this just to be complaining. there is actually something very nice, for me at least, about this.  friday night i got together with a friend who also has some of the same heart issues as i do.  so that is not good for her and i hate it for her.  she has two boys who are still young and now a new granddaughter.  she has had enough loss in her life to deal with.  all of this aside we went out friday night and it was just fun.  neither of us had to feel like we were holding someone else up or taking too long to walk.  when you are out with someone who doesn’t have any health problems they are walking much faster than we can. sometimes there is the look back to see what happened to you and other times people get to the table and realize they are alone.  most of the time we all just laugh so no feelings are hurt.  going out with someone who can’t walk any faster than you means you both get there at the same time and you both understand.  no apologies are needed.  a whole evening of not feeling like i am slowing down anyone else.  i was exhausted by the time i got home but felt so great at the same time.

not looking forward to taking another pill but i know how fortunate i am that there is a pill.  it has come to pass that i know how my grandmother felt.  she used to talk about how much the world had changed since she was a girl and when i think about how much has changed since i have been alive.  things that use everyday like the microwave have been developed in my lifetime.  medicine has really changed, what is being done with robotic surgery completely amazes me.  medication is nothing short of a miracle.  things that in the past were considered terminal/incurable are not only being cured but those things that used to cause great suffering are now an inconvenience.  just think, cancer that was a death sentence is now treated and in months the patient is cured!  even if not cured the years added by modern medicine is astounding.  i have a defibrillator in my chest!! a pacemaker to set the rate of my heart, medication to push fluid out of my body.  that we can create a human being and give that human being life is unbelievable.  to keep a human being alive longer, and not just alive but alive and living a happy life, is incredible. glad i got sick now and not a few years sooner. grateful for the time i had with my friend and grateful for the time we both have been gifted by the medical innovations.

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the rights of the dying, do we really need it spelled out for us?

May 27, 2012 at 3:34 pm (death, death with dignity, defibrillator, doctors, dying, euthanasia, family, feelings and thoughts, how does it feel to die, meditation and pain, pain medication, religion and death, rights of the dying, truth, Uncategorized) (, , , , , , , , , , , )

the following is from another source and is sited at the end of the article.  my question after reading this is do we really need a book that tells us how we want to be treated and that in an ideal world this is how we would all be treated?  these are just some of my personal thoughts on the subject.  we all have some basic human rights and we know that not all in this world enjoy those rights for many reasons.  some it is political, religion or even on the smaller scale it is the world we as a family or community have created.  in other’s there are these rights and more, the luxury of being able to afford such rights.

my opinion is just that an opinion. the book itself may be of great value to some, just not me.  please make up your own mind if this book is for you.  my goal here is just to continue the discussion and not to critique this book in any way.

The Rights of the Dying

The right to be treated as a living human being

* we are born are we not with the right to be treated as a living human being? do this imply we must remind people we are living? in some cases it is easy  for our loved ones to stop asking our opinion about things, usually due to kindness and not wanting us to use our energy on the mundane.  most of us want the mundane. we want to know that we are still contributing on some scale no matter how small.  it is a blessing to me that my friends still seek my advice or opinion. sometimes they just want an ear and that is part of being a friend or sister or spouse.  would you check our account balance or has that check cleared? can you text since i don’t text? can you help? even in the smallest way is just part of being a living human being.

The right to maintain a sense of hopefulness, however changing its focus may be.

*in my opinion no one can take away your hope!! even if it is the smallest hope for the day. this is something that is personal to each of us. to say we can lose that right is ludicrous.  did the prisoners of the camps have the right to hope? of course they did. not even the Nazis and the extermination could take away their hope if they decided to make that part of who they were.  no doctor can change if i decide to hope, and if that hope is not that i live but that i die with ease that is my right too.  do i need a book to tell me that i have this right?

The right to be cared for by those who can maintain a sense of hopefulness, however changing this may be.

*this one is a bit more tricky. by cared for do they intend that medical staff be required to stay hopeful?  do they have to be hopeful for me to receive good care?  if we can focus on medical staff first, it is certainly desirable for my dr. to remain hopeful and to let that change. don’t they also have to be able to be honest with their patient. i for one want to know the real deal and not some fairy tale.  not that long ago women weren’t always told the truth and in fact dr’s could make that decision for the entire family..  sometimes husbands were told and then it was up to them to make the final decision of what the little woman would be told.  my dr. does not have to hope that there will be a miracle for me.  i can hope for what i choose.  as a former nurse it makes sense that an attitude of supporting the patient in what they hoped for would be requisite.  it is of course what we would hope for in family that cares for us.  let’s not mistake what we would like and what may not be an option. if you are being cared for by family they may not feel hopeful.  do we then say they are not adequate caretakers?

The right to express feelings and emotions about death in one’s own way.

* there are rights and there are responsibilities that go along with these rights.  do i have the right to say whatever i want without regard for the feelings of others? this isn’t just a question for someone who is dying. just because you are dying doesn’t give you the right to disregard the feelings of others.  someone who is not dying has the right to say how they feel about their life and those around you have the right to say that is not acceptable to me. if you are hurting someone else with your words how is it so special that you are dying?  the reality goes beyond this, if you were to say to your doctor i can’t take this and i am going to go home and end it all he then has to take steps to protect you.  this may not be the result you want however if you say whatever you want without thought to consequence it may not lead where you want.  telling someone they have the right without explaining the consequences seems a bit irresponsible.

The right to participate in all decisions concerning one’s care.

*this is a patients right and not just for the dying.  you may have guessed by now that it annoys me for someone to “write” a book without having some new or crucial information.  books cost money, people buy them thinking the person writing has some expertise unless it is just a personal account of events/your own life.  it does leave me wondering who is being denied this right? years ago elderly patients were not routinely being asked to participate and since they grew up in an era of the dr. knows best they often gave up this right willingly. it is sad to think this was happening, the good news is our society is making strides in rights for everyone.

The right to be cared for by compassionate, sensitive, knowledgeable people who will attempt to understand one’s needs.

* is this a re-hash of previous rights?  were the writers being paid by the word here? again in an ideal world and we would hope this goes without saying.

The right to expect continuing medical care, even though the goals may change from “cure” to “comfort” goals.

* we have entire specialties now that focus on the comfort.  hospice is the go to for this. they also

The right to have all questions answered honestly and fully.

* we should expect this not just as a patient with a terminal illness.  if we are not getting honesty from those around us this may not be a new problem.  my hope would be that we deal with dishonest relationships before we arrive to this gate.

The right to seek spirituality.

*this doesn’t seem to be a problem now if ever. when in the hospital a chaplain came to my bedside each day.  my issue was the opposite, it was assumed that i am christian and even when i explained as kindly as possible that i am not christian he pushed to come anyway.  he was a nice man and i couldn’t bring myself, even in intensive care, to assert my right NOT to seek his prayers.  oh well, i decided it wouldn’t hurt me so no harm no foul.

The right to be free of physical pain.

* one would only hope but i am here to tell you it may be a right, however, you are going to have pain and will have to decide how you want to handle this as an individual. my choice not to take meds may not be your choice.  pain is a part of living, again this is an individual choice. toward the end many change their mind about the comfort meds can offer. some decide to keep their awareness and forgo that aide.

The right to express feelings and emotions about pain in one’s own way.

*this is just filler. this has been addressed in earlier points.

The right of children to participate in death.

* again not sure why we need to be told that our family has the right as do we to be in their loving presence at the end if that is what all concerned choose.

The right to understand the process of death.

*each death is different and dr’s can give you some information based on previous cases but keep in mind your experience may be unlike others.

The right to die.

* we have the right to die but not with dignity except in a few states.  we can refuse life-sustaining measures but in doing so we give up the right to be pain-free.  those who oppose death with dignity say we can just stop taking meds or nutrition/water. in doing so we will eventually die a long and sometimes suffering death.

The right to die in peace and dignity.

* this is a legal right in some states but not in the majority. this is a shame on our society.

The right not to die alone.

*again this is not really a right as i see it. it is our wish for those who do not want to be alone at the end.  too many do die alone and lonely. until we have a society that does something to change this, it is an ideal and not a reality.

The right to expect that the sanctity of the body will be respected after death.

*if forced to call 911 as you are not under hospice care the 911 team must do everything possible to restore you to life.  that is not being respected as i see it.  we can expect it and need to understand it is a possibility that it won’t happen.  just remember that your family is going to do all they can to ensure this.
“The Needs of the Dying” by David Kessler
 

 

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Back to the list making

March 21, 2012 at 11:26 pm (angina, coping, death, defibrillator, family, Uncategorized) (, , )

so I have had a couple of days to think about what happened the other night.  after seeing the video about the man being eaten by the orca and then immediately hearing about my friends brother, it was really just overload.  my emotions seem to be affected more lately. everything I read says that happens, however, I had not experienced it so maybe it was wishful thinking but there you go I was hoping to avoid this one. would it be so much to ask?  just one little symptom.  there haven’t been any complaints from me to this point and not to be a baby here but I have suffered some fairly intense pain and without much fuss.  so far it has just been the annoyance of canceling an event or evening with friends or family.  sunday we were going to have the occupants of the moonshine mansion over and had to cancel.  it worked out well in the end as something unexpected came up on their end as well.  monday was a total loss and yesterday was not much better. 

tonight though we had dinner with our friends and it was so enjoyable that even the pain from the angina could not bring me down.  my sister Angie called earlier and we gabbed a bit.  I told her about the video and the friend’s brother.  it occurs to me the statistics may be right and we are wrong. maybe I am not going to be the exception.  research shows I will not live to see year 5.  February marked my 4 yr anniversary.  my angina is now unstable and that is not a good sign. it moves me closer to setting a date to have my defib turned off. she asks if his was off and i say no.  she says this time next year I will remember this and celebrate that we are right, I will make it. 

this brings me back to my list making.  i have a clear understanding of what his stuff means to him, that is not the issue here.  he becomes overwhelmed and as he gets older it is harder for him to lose anything.  even a sock.  he was cleaning out drawers ( I have to laugh here) and as i came in the door a single sock flies across the room and into a drawer that was supposed to be the object of his attention.  why keep one sock? i may need it.  honey really?  okay the other one is in there.  show me.  no.  please show me. no, you can take my word for it.  please just show me. okay, there is no other sock.  then maybe you can let this one go?  for you.

if he can not part with a sock how will he part with my things?  so I try not to collect anything he will need to decide about later.  my hope is our girls , all of them if need be, can help him move through this difficult time.  one other way of handling this is for me to designate people to receive certain things.  i am sure there is going to be a lot of “what the hell?” and she must have been kidding when they see the list. all I can say is I hope they keep their sense of humor!  this stuff has to go to people who will do with it what he would not be able to … let it go.

back on track and making my lists again. there are still some things to be done.  in between we are still living life to the fullest.  tonight my love said I will make it longer than anyone expects because I am loved.  i know he means to encourage me to stay positive.  the truth is people die everyday who are loved. people who have a great support system and the money to buy the best care possible.  this is another gift i enjoy, we have great insurance so that isn’t a problem.  just knowing there are no worries about money and seeking medical care gives me an advantage that so many don’t enjoy.  we all deserve it. everyone deserves to have the best medical care and not have to worry about the bills or can they even get in.  we do live in a great country but we are not done! we have far to go.  maybe if our elected officials would be required to make a to do list and show it to the public we could judge them on what they are actually going to do in their service of us.  they are supposed to represent us aren’t they, I mean all of us. not just the republicans and not just the democrats.  ok I am way off track here. 

my life will be gone in the blink of an eye. if no one is looking will anyone know? will I be missed?  these are questions that come to me and then I think …

why would people not want to have healthcare for everyone, how can people be better informed about hospice care and what about that Rush Limbaugh calling that girl a slut and saying it is “entertainment”   these issues will be here after i am gone.  they seem to move me from the small world of me to the real world of us.

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I was not expecting this …..

March 20, 2012 at 2:51 am (death, defibrillator, dying, how does it feel to die, life is random) (, , , , )

a couple of days ago I messaged a friend in another state.  we are not exactly friends but are acquainted in a rather strange way.  TG has a brother who had a defib implanted about the same time I did.  the brother was doing well and enjoying this gift of extra time as I am.  tonight I saw that TG had answered my message and it started with how he and his wife are doing, then he says his brother passed in Jan.

of course I am happy for the brother who had his brother for the extra time.  I am happy for the brother who had the gift of time.  he seemed to make the most of that time.  it was not a cure of course and so he is gone.  just like that …. one moment we are here and next we are gone.

earlier today a friend sent a video that showed a man on the beach, he is waving to his friend who is holding a video camera.  the man is waving and suddenly an orca scoops him up and he is gone.  he was not in the water, he was on the edge of the water.  if his friend had not been looking no one would have ever known what happened to this man.  that is almost incomprehensible.  he was just gone,  just like that…. gone.

my own health is changing, now I have angina or maybe I always did and it is just severe enough to notice.  I have booked and planned the trip to oklahoma for my husbands reunion.   if I can’t make it I am hoping that one of his daughters will go.  I will do my best to go if I am not gone by then.  It could happen to any of us, we are smiling, waving, and then we are gone.  just gone…..

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to do list- hair, funeral home and cat food

March 1, 2012 at 4:30 pm (defibrillator, military funeral) (, , , )

to do lists have been my salvation for many years.  usually there are so many things to get done or want to do that if I don’t write them down and prioritize, they wake me in the middle of the night.  even though I have a great memory it has been a fear that I will forget something that wait.  even now with little to do other than get up I find a way to have a list.  there always seems to be something that I would like to get done and though now the list is more of a suggestion than a have to it gets made and gives me something to focus on.

monday the list was get your hair colored, go to the funeral home and make sure to pick up some cat food.  to an outsider that might seem like an odd list as no one item has more importance than the others.  well actually there is one more important, getting my hair colored.  no way am I walking around with those roots:)  over the years I have considered letting it go grey, I am old enough to be grey now so it would be perfectly natural.  it is a gauge for me in some ways. if I ever stop caring about my roots or think I am too tired to take care of it then I am in trouble.  as I told my hairstylist there is no way I am dying with grey roots. 

after checking off the hair appt we are on to the funeral home.  this is my idea and chris trusts me that it is wise for him to go.  the idea is to make him as comfortable as possible.  let him meet the guy who will be handling things.  this way when the time comes he will not feel so disconnected from the people who can help him manuever through the process.  we sat down with dave and told him what we wanted.  there was that moment of awkwardness when he thanked me for my service.  his father had served in the military and he was a self-proclaimed army brat.  he gets the forms and starts filling them out.  I do not want the super-deluxe casket that is just going to be burned with me,  no I am opting for the nice cardboard box. much more practical I say to him, my eyes are meeting his but my attention is on my love and how he is doing.  a few jokes and soon chris is asking if I want the one with the sunroof.  then there is talk of leather upholstery but it makes me hot and it is going to be hot enough I say.  david is not sure what to think, I see it on his face, he is not my concern, chris is.  david is fine with the basics, once he knows I am entitled to more than the 200 or 3oo most v.a. customers get he is telling us all about the different options available.  we had originally decided not to have any military honors when the time comes.  david made some points to us that i now feel were a gift.  as the son of a veteran he talked about what an experience it had been to attend his fathers funeral with the honors.  chris who had been in agreement with me now says maybe we should for our grandchildren and my son-in-law. maybe they would find that meaningful.  david had been ready to be a one man funeral until that point.  he actually said if we would let him he would take part of my ashes and intern them at the national cemetery. he showed us pics and it is really beautiful.  rolling hills, trees and headstones that look like Arlington. the “niches” are behind very respectful and simple plaques.  my answer was that chris should do as he feels with my remains, the service or memorial is for him and my family, it makes no difference to me what goes on as long as I am cremated. it was interesting to watch as chris started to think more about what others in the family might want.

we talked about not wanting to call 911 at the time of death and he agreed.  at first he thought we could just call the coroner’s office but after doing some checking he came back and said we will have to call 911 unless I am signed up with hospice.  this seems ridiculous to me but there you have it.  the law used to be if someone was under a drs care for a terminal illness the ambulance and all that entails could be skipped.  so now I will talk to my dr about what can be done.  hospice for me is a waste of resources.  it is still my intention to go at home not in a hospital or hospice if at all possible. 

have to go take care of my last list item for today, go to the bank.  so the new list will be see the dr., make an appt with the cardiologist to disconnect the defib, buy a new tablecloth and check when we can visit with family.  lot’s to do and naps to take. better check on cat food.

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to defibrilate or not that is another decision to make

January 25, 2012 at 4:03 pm (defibrillator, end stage congestive heart failure, how does it feel to die, Uncategorized) (, , , , )

having the defibrillator implanted brings with it some questions of its own.  at what point to unplug and go “au naturale”   there was some hesitation on my part to have this thing installed in the first place. not to say I regret it now as that is not the way I think about things or try not to.  once the decision is made my goal is to make that work. if it doesn’t it can be   re-evaluated.  over the years many decisions have been re-evaluated, fortunately not as many in the past few years.  at the time of this decision I was not alone in the dr.’s office. husband sitting, leaning forward in that anxious fight or flight mode.  cardiologist determined to have this device implanted in my body, sitting there it struck me that these two men had the same goal but for very different reasons.  the man I love says we have to do this, it will give me more time with him and he with me. doesn’t that make it worth doing? what to say to that?  of course it must be done, if not then the conclusion will be made that more time with him is not what I want.  of course I want more time with him.  who would say no to more time?  like the commercial who wouldn’t want more money?  there is of course the fine print.  it is in fine print for a reason, much like the wizard of oz and “pay no attention to the man behind the curtain.”  here the fine print is the surgery itself, the everyday problems with the device, and finally how does it work in the end?  picture this, you are at the end of your life, peaceful and accepting of what is coming, you are surrounded by family, your loved ones or even just your cat.  you close your eyes ready for the big sleep, then a horse kicks you in the chest.  yep the defib does not go so peacefully into the night.  the mission is to shock your heart and keep it pumping. there is no off switch.  forget about drifting off to sleep and being at peace.  no you have the rolls royce in your chest my friend so there are a few more kicks to come!

this does not appeal to me.  timing is everything they say and though I have still not met “they” it is my opinion in this case they are correct.  not wanting to do this too soon and miss even a day of life while it is still so sweet to me, not wanting to wait too long and be denied the option of disconnecting this device, timing is everything.  this is the 4 yr anniversary and there is (statistically speaking) not to be a 5th anniversary.  there is always the first or the exception to any situation.  there may have been people who did make it to 5 and beyond, they may not be a part of the group used to establish the statistics.  there is an equally good chance that I will not make it to next february which would be entering my 5th year.  no one has made it to year five,  end stage congestive heart failure….   no still not tragic:)  sorry I had to give it a moment. 

strange how we all react so differently to the same stimulus.  for myself this is no tragedy.  life has been an amazing gift. whatever comes now I don’t really mind.  there have been so many moments of sheer delight and even today when I am physically struggling, my life is rich.  when done here will make my way to the double recliner bought so we could sit side by side.  just being there, talk or not, cats on the lap, texting with friends or family, just being.  days like today are a reminder of how serious this really is.  no denial here.  the body does not allow for that and that is not what I want.  it is what it is and today it is challenging.  ahhhh but there is tomorrow and hope for a better day!  going now, to sit and just be.  will keep thinking a bit about whether or not to turn this device off.

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