what’s in a number anyway?

March 2, 2014 at 2:47 pm (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living will, living with dying, medical power of attorney, no more tests, rights of the dying, support system, testing for kidney failure, the dr. says)

yesterday before i was discharged the GI dr came in to see me.  he was being consulted to determine where i am losing blood.  at first he was smiling, bordering on jovial. then he says the familiar words “has anyone told you that your liver is cirrhotic?”  not meaning to, i laugh. he becomes not so jovial.  i explain that yes we have known that for about 3 years. one of the first tests, aside from blood work, i had ordered was a ct scan of my abdomen.  to his surprise my liver disease is much more advanced than my blood work reflected. this is no surprise to me as i have always been that way. years ago my white cell count had been perfectly normal even though my appendicts was  ready to burst.

he wants to know what i am doing about it.  when i tell him nothing he starts glancing at chris as though he will say something that makes more sense to him. that is not going to happen.  i explain that we have decided i am not going to have any more invasive procedures or tests.  if there is something you can do about it that would make sense wouldn’t it? he is asking and searching our faces, thinking this will make us come to agree with him. the silence grows and he is now saying that of course there is nothing anyone can do to “cure” my deteriorating liver but that is not so important to him is it?  for him  there is a disease so i must do something in response to that.  do nothing? that is not what he is trained to do.

once he realizes we are not going to stay and engage in more testing he is gracious. he smiles again and says he wishes us the best. let him know if we change our minds. if we want a dr closer to where we live he can recommend someone.  he is going to let the hospitalist know that i can be discharged.

earlier that morning met dr paul.  he is an exuberant youngish man who has all the answers.  this dr who makes the decisions over who comes and who goes clearly loves what he does and appreciates his status.  he has come here from another continent and is now living his dream.

dr paul stands over my bedside and insists i remain laying in bed.  he begins to outline all the testing i need.  we listen patiently. when he is finished i let him know that we appreciate all that has been done in the 2 days i have been in the hospital.  i look him in the eyes and say i am ready to go home.  yes i say, nodding, i understand everything he has said to me.  for the first time he acknowledges my love and asks how he is related to me.  when told he takes a tactic.  he will convince the man and i will follow. not so my husband assures him.

it became clear to me when i was being admitted that chris and i have more clarifying to do.  one of the routine questions i was asked, while filling out admission papers, was regarding an advanced directive. then i was asked if i was a dnr (do not resuscitate). i said yes, he started asking questions. something he does, that not everyone understands, is go in to detail that can be overwhelming.  there is seldom a simple answer for him.  over the years i have learned when to settle in and listen.  other times i know that we will have to save the discussion for later.  in this instance i started to explain the question so we could give an answer we agreed on. immediately he started coming up with different scenarios, any possibility.  i knew this was going to be a conversation for later.

i consider this sort of a dry run in some ways.  he now understands that being in the hospital is not where i want to be and why.  i know that i am going to need to give more time to explaining what the living will can do for us.  other family members are going to need to be a part of the conversation in order to give him the support he is going to need in the future.  as soon as the dr’s started asking us to make decisions he became withdrawn and like the deer in the headlights.  it would have been easier for me if he had been able to show more support.  not that he wasn’t supportive of me, he just couldn’t stand up to the professionals.

one of the things that sort of surprised me was the out pouring of love and support from family and friends.  my friends here have become such an important part of my life.  the words of encouragement, support and love were heart warming.  thanks to technology i was able to see comments and facebook comments.  if i had been there longer i would have taken out the computer and talked to you.  knowing you are on this journey with me eases the way.

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time magazine and how to die

June 10, 2012 at 3:29 am (death with dignity, doctors, dr. peter goodwin, dying, end stage, joe klein, living will, rights of the dying, time magazine and how to die, Uncategorized) (, , , , , , , , , , , )

Dr. Peter Goodwin was an activist and used the law he helped to pass in his own death.  Goodwin gave lectures and interviews as long as he was able about the  importance of advance directives at the end of life as well as open and frank  discussion with loved ones. He wanted the end of life to be as gentle as  possible and within the patient’s control. He was also a big advocate of  allowing dying people to receive hospice care early, rather than letting doctors  continually try to cure them. “Physicians are taught to treat, and they often go  on treating and treating and treating,” he said. “It’s very, very difficult  because they have so much in their armamentarium — so many new ways of treating  cancer, so many new ways of treating heart disease — it’s very difficult for  physicians to give up.”
Read more: http://healthland.time.com/2012/03/14/peter-goodwin-the-dying-doctors-last-interview/#ixzz1xGEBQm11

a man named joe klein wrote an article describing the journey of his parents deaths.  in one part he discusses the hospital his father was in and how it was such different experience since the drs are not fee based.  as goodwin mentions in his interview and article, there is a push for drs under fee based practices to do tests that are not really of benefit except to make people feel like “more” is being done.  at some point there is no more to be done.  drs at the hospital in PA told him his father was in kidney failure and even if they could pull him through this time it would only be a matter of weeks before he would be in the same situation and there would not be anything to do for him.  it was left to them to make a decision of how they wanted to move forward.  standard procedure requires patients or families to decide whether they want a “do not resuscitate” order or not. 

a so-called reporter alex jones who rants and raves about the article does his best to mislead the audience.  after just minutes of watching this rush limbaugh want to be, it was clear how uninformed he truly is. what makes me sad is to think of the people who will see him and take his word rather than investigate or read the article.  it is merely a tirade on “socialized” medicine.  which of course we already have so ????

more nonsense  can be found in online sites that misrepresent themselves such as the health ranger.  this is their lead in:  The Health Ranger discusses the new TIME Magazine issue entitled, “How to Die!” which promotes death panels, killing the elderly to save money (and earn bonuses!).

mr. klein observes that the drs who were not being paid to do more procedures and consult with yet another dr without asking the family. the same family that will be paying for all that consulting.  the level of candor, sanity, and humanity from these drs he dealt with was stunningly high. 

this is something some will not benefit from. the drs will order more tests and more specialists until the last breath is taken or it is too late to preserve the patients dignity.  one of my many blessings has been to have a dr who puts the individual patient and their desire before anything else.  he is honest and candid, my trust in him has been earned.  it would be hope for all terminally ill patients to have a doctor like mine.  he understands who i am and how i want to die.  he also knows how i want to live. 

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Dr. Phil and euthanizing disabled adult children, this is why people fear euthanasia!

April 18, 2012 at 12:23 am (dr. oz, dr. phil, dying, euthanasia, how does it feel to die, living, living will, Terri Schiavo, the bad cripple) (, , , , , , , )

while we were gone the dvr was running.  on these long nights where sleep is more than elusive and even with 400 channels there is nothing to watch!  just before chris goes to the dentist i turn on the recording of dr. phil.  this was not your every day dr. phil.  for once he did not give any advice.  the only commitment he made was to say he would not want to live the way this mother’s adult children were living.  both of this woman’s children suffer from a debilitating disease.  it all began when they were very young, it gradually took them away from what most of us would consider a life worth living.  this is a question each person must ask and answer for themselves, what does it mean to be living?  video was shown of her adult son and daughter. both have feeding tubes and can not eat even puree food.  the bags are hung and over several hours each receives all the nutrition needed to sustain life.  the son has not eaten in 17 yrs and the daughter has not eaten in 5.  the mother asserts that they do not have any pleasure and may not even have pain.

the mother does not go to visit her children regularly as it is so upsetting to her.  this is understandable and until someone walks in her shoes please don’t judge her.  she was accompanied by her attorney, he was dr. kevorkian’s lawyer.  obviously he is an euthanasia advocate.  the problem here as i see it, she let the feeding tube be inserted when she had the option to withhold feeding for them.  now she wants to give them a lethal injection to end their life.  many would say she should have then and could now remove the feeding tube.  she doesn’t want to see them suffer any more. it may also be a factor that she is getting older.  does she worry who will care about them when she is gone?  they are blind, maybe deaf and have little brain activity if any.  one woman in the audience just kept saying “these are your children.”  well she knows that.

since most states consider ending your life with dignity illegal ,the only way to legally end their life is to withdraw the feeding tube. a slow torturous death at best.  to ask her to watch her children die this way seems cruel and unnecessary.  the same argument was made on the dr. oz show.  many disabled individuals see this as a slippery slope and after watching this show I have a new understanding of what mr. peace tried to share with me.  since the feeding tube was inserted at the time and there was full knowledge of what lay ahead for these loved ones it seems to have reached a point of no return.  this is not like teri schiavo since she had made it known to others what she wanted and her husband just carried that request to its end.  as children they could not say we do not want to live this way.  they depend on the kindness of loved ones and indeed strangers.  the law allows her to remove the feeding tube and yet not make the end easy and loving.

the question for me is if for some reason my own family was faced with the decision to take steps to keep me alive would they be able to say no?  even dr. phil made the observation he would not want to live under the conditions that these two people are.  why aren’t we having more discussion about this?  how do you have this discussion with those you love?  is there a segue to, do you think I have the right to end my life with dignity?  it is not an easy conversation and yet one that could make things easier.

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one more thing… the dr. says it is angina

March 20, 2012 at 2:34 am (angina, living will, medical power of attorney, medical terminology, symptoms of angina for women, Uncategorized) (, , , , )

a few weeks ago I had to go for my usual check-in with the dr. and told him of some new symptoms.  well not exactly new as they have been going on for a few months.  this was not news to me, I have already done the research for any new information.  there is always the hope that new and improved treatments have come along since the last time I was current with what goes on in the medical field.  there are 3 types of angina, stable, unstable and the third only happens to a miniscule percentage of the population.  for at least a year I have had the stable angina.  the pain usually comes on  after some type of exertion, it doesn’t last too long, especially if I go sit down and rest.  my symptoms have changed and now most likely has become unstable angina.  it can last up to 30 min or more and is accompanied by nausea, abdominal pain and some of the others that are going to be listed below.

some good news though I was reading my living will and medical power of attorney and it states that my appointed rep (of course that is my husband) has the right NOT to call 911. if he knows it is my wishes then he is required to follow those instructions.  I still have some concern for him and know that he may call just out of concern for me.  this can not be easy for him, to know that he may be faced with an incident similar to the one 4 yrs ago.  he just couldn’t decide whether to call 911 or not.  of course he didn’t know then just how serious this was going to be.  if he had not called that day I would have died.  in some ways I can not help but wonder if that would have been for the best.  just a matter of a few hours and this would not be an issue now.  so that is his point now, he called and they were able to treat me and here I am some 4 yrs later.  whatever he decides will be the right thing, it has to be what he can live with.  I have hoped to keep his and my loved ones best interest in mind always.  if I have ever made it difficult for them I hope they will forgive me.

this past weekend the two of us and heather went to see “Following the Fleet” at the High Museum in Atlanta.  heather is a daughter that anyone would be proud of, I am so fortunate to be a part of her life.  in april we are going to charleston, it is our granddaughters birthday and a good excuse to visit.  we bought her birthday gift already, saw a cute dress and couldn’t resist.  I have been buying gifts for family and friends and putting them away.  chris hasn’t asked me why I am christmas shopping just a couple of months after the holidays.  I like the thought of still giving gifts after I am gone.

this is the High Museum

 

I have tried to upload a slide show that was forwarded to me and I have kept it and look at often.  it is not only beautiful but has some great life advice. hope it works:)

snow

read my horoscope in the t.v. guide and thought this was interesting,    the support of friends and family is fuel in your tank.   “sharing your process will inspire them to take better care of themselves, too.”  I have never been a big believer in horoscopes and not sure this changes that, however, if this is true and even one person makes the effort to take better care of themselves I will gratified.

so here is a list of the information I mentioned:

Stable Angina

The pain or discomfort:

  • Occurs when the heart must work harder, usually during physical exertion
  • Doesn’t come as a surprise, and episodes of pain tend to be alike
  • Usually lasts a short time (5 minutes or less)
  • Is relieved by rest or medicine
  • May feel like gas or indigestion
  • May feel like chest pain that spreads to the arms, back, or other areas

Unstable Angina

The pain or discomfort:

  • Often occurs at rest, while sleeping at night, or with little physical exertion
  • Comes as a surprise
  • Is more severe and lasts longer than stable angina (as long as 30 minutes)
  • Usually isn’t relieved by rest or medicine
  • May get worse over time
  • May mean that a heart attack will happen soon

Variant (Prinzmetal’s) Angina

Variant angina is rare. A spasm in a coronary artery causes this type of angina. Variant angina usually occurs while you’re at rest, and the pain can be severe. It usually happens between midnight and early morning. Medicine can relieve this type of angina.

Microvascular Angina

Microvascular angina can be more severe and last longer than other types of angina. Medicine may not relieve this type of angina.

if you know there is something wrong with your body and your dr. does not listen find a doctor that will.

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terri schiavo and other tragedies

August 9, 2011 at 2:47 am (choice, death with dignity, euthanasia, family, how to die in oregon, living will, medical power of attorney, Terri Schiavo) (, , , , , )

as the world watched the tragedy of Terri Schiavo and what her husband and family went through, I decided then and there my family would never go through that. it was beyond sad and at times I felt such anger at the system that let her life and the tragedy of her death become a t.v. event and sideshow. this young woman had said to her husband and friends she would not want to be kept alive by artificial means and yet that is exactly what happened since she did not put it in writing. the anguish her parents went through hoping that somehow she would recover when several reputable neurologists stated that would not be the case here. her husband going through years of struggle with the same people he had once been family with. this was not an easy event for anyone involved, and those of us on the sidelines had some pretty strong opinions.

the one thing I hoped would come of this is more people taking care of business before it was too late for them. no family should have to go through this especially when it can be prevented. too many think oh I can wait I am still young, and healthy. well she was young and she thought healthy. beyond the group in Oregon and their fight to have the right to die with dignity are the cases like Terri’s. if she had just left her husband the medical power of attorney he could have made the necessary decisions and not fight with her parents, if she had left a living will her desires would have been crystal clear and no one would have been the bad guy making the decision to let her die with dignity.

don’t we all deserve to have some dignity left to us at the end? I certainly want to have my choices respected. more people need to understand the value of these documents and how easy it is to take care of now vs. letting your family deal with it during their most vulnerable moments. I understand for some it seems unnecessary, they will never be in that situation, but I am sure the young Terri didn’t think she would be either. we never know what is going to happen so accepting we are not safe from all things and that we are indeed frail human beings may be difficult but not as difficult as what the Schiavo/Schindler’s went through!

I would not have the energy today to take care of this so I am grateful to have it behind me and know that all of my family, whether they agree or not, know what my wishes are and that Chris has the power of attorney and my living will.  this Wednesday I have to have a ct scan of my  liver and possibly surgery to follow. for the past few weeks I have felt pretty good but the exhaustion is back along with the pain so we will see what happens. I am prepared for whatever comes good or bad. that is the best any of us can do. I don’t know whether to wish the growth is large enough to be removed, since this would ease some problems it is causing, or hope for it to be too small for removal. either way we will deal with it and be happy for whatever comes. we just celebrated our 16 anniversary, each milestone I am here for gives me such joy! now I am hanging on for the holidays:) I know they are months away however if I think how close they are it makes me feel like yeah I can see myself here for another thanksgiving, another christmas, another birthday for my dear grandson and son-in-law. I hope to continue to look forward, although looking back and remembering what a great time I have had makes looking forward even better! I wish for you all to take care of business like the living will, and take care of yourself, keep looking forward with anticipation and looking back with no regret.

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