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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what are you waiting for?

January 26, 2014 at 6:37 pm (death, end stage congestive heart failure, gratitude, heart failure and exhaustion, how does it feel to die, living with dying, testing for kidney failure, the dr. says)

As you may know we have done some traveling in the past few months.  There are stories to share and some pics to post.  So why haven’t I done this?  I have been waiting to feel better.  The problem with that is I am not going to feel better.  This is the new norm for me.  Don’t get the tissues out just yet.  Though my latest lab results confirm my decline they also inspire me.  Isn’t life just a little bit dearer when we are in a moment like this?

There is no doubt I love and appreciate my family and friends.  If I were healthy would I have such acute awareness of my blessings? I hope I would but know that life can get in the way sometimes and we aren’t always as thoughtful/mindful as we could be.

The lab results for my creatinine, bun and potassium were high so according to webmd-

A BUN test is done to see how well your kidneys are working. If your kidneys are not able to remove urea from the blood normally, your BUN level rises. Heart failure, dehydration, or a diet high in protein can also make your BUN level higher. Liver disease or damage can lower your BUN level. A low BUN level can occur normally in the second or third trimester of pregnancy.

Tests that give insight as to how your liver is working show that mine is in a down ward motion.  I could likely use a blood transfusion at some point.

So those are the technical results that confirm what my body is telling me.  It asks the question, what are you waiting for? This is the new norm. be grateful and do the things that are important to you.

What are you waiting for? Is it time to stop waiting and start acting? I don’t want to miss out on anything.  No more waiting for me.  I hope no more waiting for you; life is too precious to spend it waiting.

p.s. the caps are because I did this on word and just copied it here.  It means nothing that I don’t usually cap and have on this one:)

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