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.

15 Comments

  1. Susan said,

    I’m sorry for all you have to go through. Love you!

    • s blake callahan said,

      i truly appreciate your kindness. in truth i have a very good life and am quite happy more often than not. love and hugs to you

  2. prenin said,

    And so the saga continues! 🙂

    You’ve come a long way Sandy love and I hope you have more to go before the inevitable.

    You are a beautiful person and I love you both for your courage and for your determination not to become a medical pincushion! 🙂

    God Bless and keep you both! 🙂

    Prenin.

    • s blake callahan said,

      dear prenin having friends like you that support and encourage me really makes a difference.

      of course i hope for many more days but will be content with however many i am given.

      love and hugs to you my friend

  3. jmgoyder said,

    I learn so much from you Sandra – so much! Julie xxxxxxxxxxxxxxx

  4. Al & Alice said,

    First, I have to tell you that you are a really strong person. You did a really nice job with the doctors and you are correct that their job is to run tests and fix you. It does put them off balance when the patient says no and also that the patient knows about their condition better than the doc does. Let me say that I feel for Chris, I was there at one time, but dealing with doctors taught me that I had to be assertive or they would walk all over us. Maybe remind him that at some time you may not be able to handle the docs and he needs to be ready to do the job. About the anemia, if you have any faulty heart valves, go online and look into the destruction that bad heart valves do to red blood cells due to turbulence at the valve output. We couldn’t find any bleeding with Alice either after much testing so I suggested the turbulence damage. After several attempts, one doc agreed it could be that. Take care.

    • s blake callahan said,

      fortunately i don’t have any problems with my valves but thanks for sharing that information. as for chris it is just not in him to be very assertive. i am going to share your comment with him and open that discussion up though. you are so right that there may come a day when i can’t speak for myself. i guess that is why i have my living will and have talked to our family. my sister and step-daughters are very out spoken and i feel confident they will step in if needed.

      i think of you and alice often and hope that things are going as well as can be in the circumstances.

      blessings to you both

      • Al & Alice said,

        Really glad your valves are OK! Thank you for thinking of us and things are going as well as can be expected. I guess the best way to describe it is that each day is an adventure.

  5. maggiebea said,

    It’s often amazing to me when a young hospitalist/doctor imagines he knows better than the patient what should be done about incurable disease. Now, if he could offer something non-invasive, painless, and easy to do, that would make you significantly more comfortable, that would make sense to me. But trying to get your husband to agree to force you to do something you already said you didn’t want …

    So sorry you’re having to defend your right to the life (and death) of your choosing. So glad you are so clear in what you want for yourself.

    It is a joy to walk alongside you on this journey, even at this distance. Many Blessings for a gentle trip from here ahead.

    • s blake callahan said,

      the great thing is he isn’t my primary care doc! my pmc is a great guy who understands me and his plan was for me to go in and get the transfusion then come home. he knows i am at the point where invasive tests are not a part of my plan. it may be difficult for him at times but he sticks to the plan. we have a rapport seldom found with a dr.

      trying to drag my husband in to that discussion was inexcusable as far as i am concerned. my husband would never go against what we have agreed on. we have talked about this extensively and we have shared out decisions with our family.

      defending my choice is an honor and i hope that we are moving toward a change in this country.

      i am grateful for your support and care. i wish you peace of heart on your journey.

  6. Terry said,

    There is strength and acceptance in you that shines brightly through your words. I have always admired you and have thought how lucky I am to have met you through our blogging. God bless and stay who you are!!!

    • s blake callahan said,

      not so sure about the strength, i do the best i can though:) i am so proud for you with your book coming out and managing the impending passing of your brother. you are in my thoughts and i continue to wish you peace of heart and know that you will find it.

  7. appletonavenue said,

    It’s too bad you had to go through all this. It seems you can read doctors very well. I like the way you stick to your guns and don’t let the doctors order a bunch of, at this point, senseless tests and procedures. Thinking of you often.

    • s blake callahan said,

      some docs are all to used to just telling people what to do and having them do it. i look forward to reading more about your journey.

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