the hospital, bossy sister and what are we avoiding?

January 16, 2015 at 4:07 am (Uncategorized) (, , , , , , , , )

finding the problem with my last post has been frustrating.  this process is mostly flow of thought.  so to purposely redo a post is difficult for me.  how was i feeling at the moment i first wrote about this experience? how do i get my head back in to that whole moment? so please bare with me through the next few paragraphs. to get his pound of flesh for my previous non-compliance, dr. o turned slowly, almost like the character in some horror movie, he asks… are you ready to do anything i ask you to do?  i look for the hint of smile and don’t find one.  oh he is good! out come the words i was not prepared for, so you would go by ambulance to the hospital?  inside i am a mix of emotions, i want to give some flippant answer but am acutely aware that this is a test of some kind.  “yes” is say. oh my beating heart be still, how bad can it be i ask myself.  well, self has an answer to that question but we are not going to discuss that here and now. it starts with going to the waiting area and bringing chris back to the treatment room.  trying to put what is about to happen in the best possible terms.  how to make all this seem like just a little side trip.  the nurse puts in an iv which i am most grateful for later.  she gets it on the second try, chris is watching and cringing with each slide of the needle.  the ambulance emt’s arrive to whisk me off to the er where i will be , if all goes according to plan, admitted to the hospital.  it is frankly sop (standard operating procedure) for this medical group.  my blood pressure was out of control.  way too high for someone with my health problems. not good for anyone but especially for someone with heart failure.  on the ride over, they used sirens to avoid stopping for lights and traffic, i find out the emt with me was in the army.  the emt driving is a firefighter but is required to do x number of hours as an emt.  we had nice conversation  on the way over and arrive fairly quickly.  i was concerned about my love getting lost along the way.  it is an area with a lot of one way streets.  we are now in a hallway waiting to be admitted to the emergency room.  after 15 minutes the guys (emt’s) start talking about the wait.  it was decided the nurse manager should be called.  our ace was the threat of going to another hospital.  within minutes there was a tech taking me in to a stock room to do an ekg.  this was followed by an assignment to a room.  things seemed to be moving in an efficiently speedy mode.  chris arrives and runs into a sweet friend of ours with the police department. she pops in to say hello and confuses the nurse.  no, the police are not with us i tell her. a dr. comes in and explains the “plan” to us, we are on board with this so called plan.  meds are administered and my blood pressure goes up and down within the next couple of hours.  chris pulls his chair closer and says ” i am going to call heather, angie and kristen.  i want to protest, however, i he is set on doing this and i have no good argument against this plan of his.  seems everyone has a plan except me!  i listen as he speaks to my younger sister and my heart hurts for her.  literally my heart started to hurt, the nurse comes in when the alarm goes off again.  chris steps out to make any further calls.  now things slow down.  a new nurse comes on shift and will be around for the next 12 hours.  he comes in and introduces himself, he assures us that the promised bed in an actual room is going to be a reality soon.  yes he says to chris, you can spend the night.  no, no i say. this is not my plan.  chris compromises with the promise he will go home once i am cared for in the promised land upstairs.  we sit back and watch as one then another are taken upstairs.  the nurse does not come back.  i can hear him calling and asking when this bed will be ready, reminding who ever is on the other end, that i have been waiting approximately 3 hours at this point. at last a young man comes for me.  in the meantime i have asked chris to bring some items to me upstairs.  as we are going up there seems to be some confusion, yes we are going to the third floor, however we are not going to the unit that is open for business.  we are going to a “unit” that has been closed for a prolonged period of time.  i remain on the gurney, now in this room i am moved to another gurney.  this was a recovery room for patients recovering from heart surgery.  two nurses have been pulled from another unit and have not even found where the bathrooms are on this floor. that’s right, there are no bathrooms in these so called rooms.  there are actually 2 bathrooms on this whole floor.  these have to be shared not only with patients but with their guests and there were lots of those.  i find the bathroom and show the nurses where they are for everyones convenience.  suddenly patients are being sent up from the er.  the nurses are overwhelmed and call their boss.  at this point i decide for self preservation i will unplug and plug all attachments from their machines. let’s cut to the chase here.  lots of dr.’s, physician assistants and nurse practitioners hear the story of my lapse of judgement regarding my little “shocker” in my shoulder.  my poor man gets lost driving and calls me, i try to navigate him back to the hospital.  he finds the interstate again and makes another run at the landing pad.  his plans are to stay with me and i have come up with a plan of my own.  there needs to be this buffer between me getting news and me passing it on to him.  i am very clear with all staff that nothing is told to him directly.  no matter what i am going to protect him the best i can.  that doesn’t mean leaving him in the dark, just that all information is given with the best twist possible.  i can tell he is grateful to be sent off home.  it is now his job to take care of the fur-babies and himself.  the young man who looks at the read out of my implant(ICD) and i confess to my lapse.  when the dr comes in there is some whispering.  turns out my battery started winding down on the 21st of october.  there is typically then a 3 month window to replace the battery.  i was looking at days now rather than months. the dr doing the surgery is such a nice guy.  very sensitive, i can tell.  he is obviously taken aback by the time between the implant surgery and the visit now where we are in a time crunch.  as i remain in this no mans land staff is coming and going.  they all offered their assistance but were visibly relieved to hear that i would not require their attention.  a bed was finally provided, it was moved in to the room i was in rather than me being taken to where the bed was previously. all through this i am talking to or texting my younger sister.  for the hour that i am on the phone with her i am not the sick sister, wife, mother, nana or great nana.  we laugh, typically at ourselves or if need be others, and the nurses are starting to look in, i know they are wondering what i find funny.  one nurse became teary when speaking to me.  this is what i avoid at all cost. most of us sick folk want to avoid this aspect.  please do not feel sorry for me.  there is no reason to what so ever. i have to stop as i am writing this post.  i am struggling with angina pain and fatigue.  not getting enough oxygen i start to have this numbness spreading over me.  until next tuesday when the battery is replaced i plan to just coast along.  my next post, which will be soon, i want to tell you what is going through my mind regarding this decision.  i will not avoid you or this decision and what went into it.  we need to talk about this and some other things on my mind recently.  what am i avoiding? we will speak of this at another time/ another post.  thank you for caring about me, i hope that you are not reading this feeling sad.  i’m not. angie thought i forgot to mention why i said my bossy sister! oh no, no, i am going to tell it here and now.  you might expect that she would be all gooey but you would be wrong.  she nagged me to the point of complete surrender on my part.  every contact included certain questions.  what do you mean your going home without the surgery?  when are they scheduling the surgery and my personal favorite…. do what they say, i mean it.  she knows me in a way others will never know me.  the time we spent on the phone laughing was exactly what i needed.  she has always known that weakness. our mother brought it to my attention just a few short months after she was born.  it came with a warning, “sissy” she knows if she makes you laugh it’s all over.  she still makes me laugh and yes that is how she still can get me to do anything.  chris makes me laugh in that way, it was one of the things that i fell in love with, over the years i have come to treasure that laugh of his.  oh how you will all be missed if things do not go according to PLAN.  i love you and will hang on as long as possible.

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Urban Dictionary: I’ll gladly pay you Tuesday for a hamburger today

December 15, 2014 at 10:37 pm (Uncategorized) (, , , , , , , , , , , , , , , , , )

Urban Dictionary: I’ll gladly pay you Tuesday for a hamburger today.

last night we had a couple of friends over for dinner and one of the couples knows that i have stopped taking my meds, at least intermittently for now.  just as we were getting ready to sit down greg asked if i was still not using my meds and how was that going. i quickly reminding him that was hush hush and he smiled with an apology. he believes this may be the best thing for me so that i can really enjoy these last days of my life.

as a result the first thing i thought of was this character.  basically that is what i am doing. i am not getting a hamburger but i am getting something now and offering to pay for it later.  of course he never had any intention of actually paying for his advance  and i know that i can not avoid paying for my advance.

last night was a rare night for me and i want to give a lot of credit to my guests. they were two couples and just fun, low key people. they both brought us poinsettia plants which are my favorites and i was so grateful and excited. one couple brought actual how made cookies and they are delicious!! charlotte is definitely a great cook.  her husband ken is one of the most kind men i have ever met and they are just interesting fun people to spend an evening with.  everyone just stepped in and helped where needed. it was not a big deal although they all know that i am suffering from heart disease along with a few other organs going in to failure.

by the end of the dinner i could barely stand, walking, even sitting was shear torture but it was my choice and gladly chose this time with these particular people for a reason. in the end chris and i and will say how much fun we had and as they may be the last people we entertain there are no regrets.

at the end of the day i was so swollen and just in pain i could barely walk to bed.  i couldn’t get my legs on the leg rest of the recliner. once everyone left  broke down and started crying from the pain.  by now i had taken 3 pain pills which is very rare for me.  i tend to get a prescription for 30 oxycodon once a year. usually they last for the entire year and so it concerns me to take so many in one day.  guess i will worry about this when the holidays are over.

i feel empowered knowing that i have friends who support my decision and will spend time with us without ever making me feel like i am dying.  make no mistake i am getting closer.  i feel it.  the visits from those that have gone before have become more frequent.  the bear is sometimes so close i can feel her breath on my face. she whispers of what it to come and how she just wants to be with me when the time comes.

the questions now are do i let him know and give him the option of being there or do i protect him and let him simply come to me when it is all over.  can i wait until angie is here? if so how long after she arrives do i give it? if i get “better” how much “better; do i have to get to make it worth the continued suffering?

for now i am just concentrated on my sister getting here on saturday and going to charleston for christmas with all the family.  now that is a great way to end your life.  i am grateful that i have had all these conversations with my family and so they all understand my choice and what i am asking of them.  i have the best family and friends.  wowow i am so blessed!!!

much love to you all and to all a merry christmas:)

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a good day?

October 5, 2014 at 2:57 am (Uncategorized) (, , , , , , , , , , , , , )

as he does every night, he gives me a kiss on my lips and hand. then he says “as always thank you for a great day.”

oh dear it has been a great day indeed.

i fell asleep about 8 am and woke at 11:45.  moving about in a bit of a haze i decided to make he and i eggs. that should be easy, right?  as long as i can keep all my fingers and not fall over one of the cats. work in the insulin and pills, heat the pan, slice, whisk and then there it all is.  i notice it is not cooking evenly but my balance is getting worse so we never liked hard eggs anyway.

eggs served and eaten, nap time, i wake again very late and he goes for take out.  we eat and watch a saved masterpiece mystery.  he rubs my legs that have been giving me great pain. oh his tough is still the thing that can bring me to my knees.

a couple funny shows and then he is off to bed.  it is nearly 4 a.m.. and i will soon join him. i am hoping for sleep. no not that peaceful eternal sleep, not until i decommission this badge in my chest. just sleep, may be i”ll be able to spend more time with him.

that is a great day to look forward too. yes looking forward is what we do a lot of these days. the nitroglycerin will make times easier though i think his leg rubs may beat them for effectiveness:)

 

a coffe at starbucks after visiting our favorite place barnes and noble:)

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our first road trip where we learned we really enjoyed each others company!

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maybe we don’t need to say it

October 10, 2013 at 2:30 am (Uncategorized) (, , , , , , )

for the past few weeks, maybe even months, he has been talking about what we are going to do for new year’s eve.  today he asked about valentine’s day.

we went to the biltmore inn a few years ago and it was fantastic.  the whole night was magic.  last year we went to the grove park inn for valentine’s day.  both of these are beautiful and yet very different places, they are in the mountains of north carolina.

i started to ask him why plan so far in the future?  then i stopped myself.  i know why.  he may not know why himself consciously but it is in there. it is in his heart and thoughts.

he hopes that making plans and  thinking about the future will somehow stop the inevitable from happening.  we do talk about what is coming, however, we don’t feel like we have to talk about it.  there are things that we both know. things we both hope for.  we hope that when the time comes it will be as easy as possible for death to be.

making these plans postpones de-activating the defib.  this does make it more difficult for me to make that decision.  should i do it before the new year? should i wait until after valentine day?  on good days i believe i can stay here through the holidays and even through the new year.  is that too much to ask?  i also find myself wondering if i turn this thing off am i turning my back on time i could ahead.

we don’t need to talk about these things.  we will have to play this one day at a time.  oh wait…. that is what we all do.  no need to talk about it now.  there will be a time for that, as there will be for us all.

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the expiration date is looming

January 10, 2013 at 1:13 am (Uncategorized) (, , , , , , , , , , , )

if i were a can of tuna no one would take me off the shelf.  heck i would put me back on the shelf.  when first given this news i remember thinking … well 5 yrs. isn’t tomorrow, the other thought was a rather defiant.. what do they know?  even  as someone who worked in research and having tremendous respect for data, i know that there is always an exception. well almost always. if you jump off a 20 story building i don’t think you are going to beat those odds.   so when i was first diagnosed with congestive heart failure the research  cardiologist brought out the reports to show me no one survives beyond the 5th year.  so that was 2008.  this is 2013, easy math.  i received this news on my birthday and that is 5 mos. from now.

a few things going through my mind as a result of this.  i want to have my defibrillator turned off. this is just a matter of when and not if.  if it is off there is a great chance i will just go to sleep and not wake up.  that would be my first choice.  there are other matters to consider and i feel that i have to make some choices on my own and not involve family or friends.  one of the blogs i read regularly is written by a woman whose daughter is dying. not just in the someday realm but in the very real now time.  tersia’s ability to share what she, her daughter and the rest of their family are going through has been of great benefit to me.  not only have i come to care very deeply about them i have come to see another side of this coin.  what we the dying choose greatly affects those we love and care for.  vic does not want to be sedated during these final hours and i can certainly understand how she feels. i might have even made the same choice.  now i am going to make sure my husband and family know that i do want sedation.   i am making this decision now in my present frame of mind.  who knows what i will think in the throes of my last hours?  it seems easier now to let everyone know my choice and i think it will be easier for me later to have in mind and abide by it.

other blogs have touched me and given me insight for which i am grateful.  when reading of a husband who is much-loved and loving , drives his beloved to tears, my heart has broken for them and i felt sure this loving husband would not want to cause such pain.   as much as i made every effort to anticipate issues that would create discomfort or pain, there has been much to learn from these generous of spirit women.  in writing for themselves they have made my path smoother.  in their pain, hopefully, my own family will endure less.  i want my family and loved ones to know, although i would prefer to die at home, i want what is best for them.

it is obvious he is thinking about this expiration date.  he makes as many plans as possible.  after december we had agreed to take a break and get some rest.  right away he started making plans and is pushing to make reservations over the next couple of months.  for a healthy person a trip every 6-8 weeks would be fun and it is fun to think about.  when it comes time to go, the reality of how tiring it all is comes crashing in.  i will try to make some of the trips and add to our memories, we have some friends coming from out-of-state in a couple of weeks.  i am looking forward to that.  we may go away for valentine day and if we are going to cumberland island it will need to be soon.  as far as the expiration date goes i know that it is down the road, i just don’t know how many curves are going to be along the way.

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saying goodbye

September 27, 2012 at 11:24 pm (Uncategorized) (, , , , )

growing up these were words i dreaded.  it was always in the back of my mind that someday my grandmother and i would go to california and i would have to stay.  i knew i was going to say goodbye to my grandmother and it would be painful.  when the time came it was more painful than i had imagined.

now i know that there will be a time when goodbyes are going to be needed.   there is a good chance that i will simply die in my sleep.  well that is if i get the defibrillator disconnected.   if things do not go that gently, goodbyes will most likely need to be said.  this is not something i have given a lot of thought to. i have found that writing here helps me process and the feedback gives me food for thought.

one possibility i have been pondering would be to say goodbyes through letters left behind or the videos i plan to make.  an amazing woman who shares the plight of her family and her daughter who has a terminal illness, made the remark (the daughter) that she thought she had more time.  it turned out she does have more time, however, the remark made me start thinking.  we always think we have more time until we don’t.

there have been times when my heart was failing, my kidneys were failing, and the last thing i would want to do is say goodbye at those times.

is there a kind way to skip goodbyes or make some alternative arrangement?

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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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Davey Jones dies suddenly and the bucketeers

March 12, 2012 at 8:07 pm (bucket list, davey jones, Uncategorized) (, , )

Davey Jones died suddenly of a heart attack at the age of 66. how did this happen?  although The Monkeys were popular when I was early teens they were not my favorite.  I hope it was sudden and he had done the things in life that he wanted to do.

one of the reasons I want to de-activate my defibrillator is to give myself the opportunity to go suddenly if that is what is supposed to happen.  with the defib that can’t happen, it will try to jolt my heart back into action even if my heart is ready to quite.  there are other reasons but I don’t think it would bring any comfort to those I love to discuss it here.   what I would hope is you know that I have not made any decisions without fully weighing the pros and cons.  this has not been an emotional response to my condition.  be assured that any choice made by me has been given much thought.

recently I joined a page on facebook that gives an opportunity to talk about your bucket list and to see what other people are hoping to do.  it has been a joy to read some of their comments.  this weekend I posed the question “if you knew you only had a year to live what would change on your list?” (keep in mind they do not know my situation) and the answers had some commonalities.  the major thing in common was spend more time with family, one was to beat down the door of a relative who had not been in their life for years.  many wanted to travel, there was one getting a tatoo.  my question would be why would you wait to make these changes?

since they do not know my situation someone asked me what would be on my list.  I will give some acceptable response as this seems the best way to behave.  in truth there is nothing profound on my list.  the reason for this?  my life has been my bucket list.  there are few things left undone and what I work on now is more day-to-day plans rather than plans to be completed at some future date.  over the years I have traveled to most of the places I have wanted to see and some I had never dreamed possible.  the whole idea of a bucket list fascinates me.  not sure I totally understand the concept, is it a list for when you retire? is it something younger adults make and try to do these things?  technically it means “before you kick the bucket” and that can mean different things to different people.  if you think you are going to live , not forever, to an advanced age it makes sense to save things to do during those retirement years.  my dad retired and had made plans to go to canada, to visit family and travel some more.  sounds good?  of course, unfortunately he died before getting on the road.  would he have done this sooner if he had known?

maybe knowing your on borrowed time is an advantage. over the past few years I have often wondered if it is a blessing or a curse to know.  for me it is a blessing.  to be able to say the things that need to be said, to get things in order so those I love are not left wondering what needs to be done.  hopefully enough has been done to allow chris to take a breath  before dealing with the next part of his life that won’t include me.

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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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