so what is the gift here?
November 22, 2015 at 5:22 am (Uncategorized) (congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, kidney failure, living with dying, the dr. says, waiting for the end)
each day i try to start the day or at least end the day with a personal embrace of what gift this day has brought to me. for certain there are days that are more difficult than others. some days all i can do is be grateful for being gifted that day. even on a day i am only awake a few hours i cannot let the day pass without acknowledging the gift of that one more day.
as you may know i had a transfusion a few weeks ago. it was performed as an outpatient and really seemed to go well. each day afterward i retained more fluid, a problem with congestive heart failure that eventually takes your life. by friday i couldn’t say more than one word without gasping for air, after some coercion, from those i love, i had to go off to the emergency room. from there i went straight in to the hospital.
there was a build up of fluid that even the i.v. lasix couldn’t completely relieve me of the fluid that was and is smothering me. my kidneys were compromised by the lasix so i had to stay an extra day. you will never guess what the cure for my kidneys being less than 100%. it is fluid! they gave me a salt water based fluid i.v. which yes increased my retention while at the same time bringing my kidney function to a level needed to discharge me from the hospital. i left with a walker and oxygen. my body has not been able to release this extra fluid to date. there are times when i cough and choke. it feels like i can not get any air. it would not be any different from someone putting their hands around my throat and choking the air out of me.
afterward i am gasping, shaking and a bit disoriented. the gift? he sits beside me and i know that i am loved. i have had so many more days than i could have hoped for in the beginning. who knows what is ahead or just around the corner? right now i know that i will not be able to travel for the holidays as we have in the past. no, we will not be going to charleston this year. maybe these are the last holidays for me.
how amazing if i am given these last holidays! oh who knows when the last time or last day will be? we can just be grateful for the gift of today.
i want to mention that we have some friends who brought us food a few days after i came home. it was so wonderful to know that there are such caring people in the world and they are our friends. i have a friend who works at one of our favorite restaurants, she came to the hospital after working a double shift. she brought me my favorite food. so many gifts in one life time. i am so grateful for each day and each person that touches my life. i have made friends here, on Facebook and of course in real-time. i have friends in other states that i have not ever met, some have been my friends for years though we have not seen each other in over 10 years.
the oxygen keeps me breathing for now. my heart keeps beating for now. my soul is grateful… always.
does this make me wimpy?
November 9, 2015 at 12:05 am (Uncategorized) (congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, kidney failure, living with dying, plueral effusions, the dr. says, waiting for the end)
i have written concerning my feelings, this applies only to myself and is in no way a judgement of anyone else, regarding the use of the e.r. and pain medication. tonight i have broken both of these soft rules. i have always known that i may indeed have to use the e.r. at some point. i just thought it would be under more dire (?) circumstances. just minutes ago i asked for and received a shot of morphine. i just need to rest a few hours. i just need to be able to regroup and move forward from here.
on tuesday i had a blood transfusion. it has to be done either through the outpatient or as an admitted patient when you have congestive heart failure. it is considered risky and my cardiologist muttered under his breath as he left my room today “she should not have been given the transfusion.” although i did not have an immediate reaction i did start a slide down hill that only going to the e.r. and being admitted could stop. for a couple of weeks i was battling a virus, possibly pneumonia. then came the transfusion and my body just couldn’t handle it.
i was adamantly against going to the e.r. until this,
angie: you’re not the one with the dying sister who is going to suffer the loss.
for a moment i thought she was joking, she had made the comment to me once that i could not use the “i’m dying card.” so in the void left by this deeply raw and honest truth i replied, “you’re not going to play that card are you because you can only use it on a limited basis.
i look at her and am a bit ashamed that i have brought her to this point. how could i not see that she and he are worried and frustrated by my rejection of possible remedy. her eyes hold what could become tears, oh i want to move across the room and hug her tightly but i am too ill to do so and know that i must go to the dreaded e.r.
she has bought in to the opinion of some nurse on the phone line who tells her i will get oxygen and just take some home with me. of course i am now in a room as a patient of our local hospital. that alone is the frustration i carry. does this make me a wimp? have i given in to the idea i can be fixed? no, this i know for sure, i have not been blinded to the reality that i am coming to that place where there are no more steps to be taken. it will be time to open myself to the universe and welcome this part of my journey.
my mind is analyzing and seeking the answer to this question, by asking for pain medication have i crossed a line that changes me and what i stand for? my chest x-ray showed pleural effusions. i will explain in my next post but for now let me say that there is a high level of pain involved. given time i have no doubt i can walk with this pain without fear or dread. tonight though i have asked for relief. just for tonight i jokingly welcome this wimp who decided not to be brave tonight. tonight i am a wimp and i can love this part of myself. she will have to take a back seat tomorrow but for tonight she is calling the “shots.” not as clever as judy or any of the other real writers i have come to love but not bad for a wimp.
good night to all you brave beings who face your battles with grace that leaves me inspired and in awe. good night to all the wimps who i am learning to respect and understand in a new day and new light. now if i can just get a few hours of rest here where the lights are never off.
the diary of anne frank
November 2, 2015 at 4:15 am (Uncategorized) (blood transfusions, congestive heart failure, death with dignity, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, the diary of anne frank, the dr. says, waiting for the end, where there is life)
just about every kid in the u.s. has been required to read the diary of anne frank. i have a few books that i have read multiple times, each time having new thoughts and even discovering a turn of words that i now see in a different way. before living in germany i dreamed of some day visiting the camps and more importantly the last place this brave young girl lived out the last days of her life.
“where there is life, there is hope.” anne frank. she was so young and had done nothing to deserve what was going to happen to her and her loved ones. don’t worry i am not about to compare myself to anne frank. we all have words that touch us deeply and guide us through life. these seven words have gotten me through some pretty extreme situations. after all if this young girl could be so incredibly brave and still believe there is hope how can i not?
these past two weeks have definitely challenged my desire to honor these brave words. it has been a two full weeks since i went to the dr. at the time i mentioned having all the symptoms of a sinus infection. these are routine for me and expected on a regular basis. later that evening i was coughing uncontrollably and realized that i had been doing so for at least a week maybe two prior to this visit. as the days went on i had fever and the exhaustion became worse. the feeling of drowning whenever i tried to lie down convinced me that i most likely had pneumonia. i have had this before, however, since the symptoms can indicate other illnesses it can be difficult to nail down (without an x-ray that is). the dr had given me antibiotics so i thought and still do think that it is just a matter of time for it to clear up.
tonight i am not so sure. maybe i haven’t been sure for two weeks. where there is life there is hope i tell myself. our family had been planning for months to all meet in hilton head, south carolina. there was going to be a car show and everyone had the bug to share this event. as the time came closer, it was this weekend, it became clear that i would not be able to go. although angie had been a part of the planning and had some great ideas for family fun time away from the car show. she immediately stepped up and insisted she stay home with me. my sweet man was so torn i felt relieved when he finally headed out. up to the last moment he would say “what if something happens while i’m not here?”
whether it is from the anemia or the heart failure or the possible pneumonia my exhaustion reached a new high. sleeping was and is difficult. if i lie down my breathing becomes strained and rattles. i use my inhalers with little to no effect. dozing for periods of time only to wake in near panic as my breathing becomes impossible. the fluid retention is more serious than it has been to date. if i thought i had difficulty before this raises the bar to an all new high.
let me walk you through this. if i were to stand behind you with my hands locked around you in the position to perform the traditional motion for someone choking, then suddenly squeeze and push against your solar plexus you would experience what i am on a continuous basis. this isn’t to elicit sympathy. i say this in order for my next thought to be easier to understand. these words that have resonated with me for most of my life have taken on a new vision.
i see this young girl writing in her diary what a young girl believes, where there is life, there is hope. it was the hope of a young girl who had not yet truly lived her life. she hoped for an end to this insanity that had her life on hold. on the other hand i am on the other end of the time line. i have hope, it just isn’t the hope of a young girl with her whole life ahead of her. tomorrow i go to get cross typed and matched for the blood transfusion i am to receive on tuesday. it has to be done through the outpatient dept due to the congestive heart failure. transfusions are risky for us. it is clear to all that i need this, my concern is with my obvious increased fluid retention i may not be a candidate. my hope is that i am able to have the transfusion. if not then i hope for relief to come after the holidays. i ask for this not for myself but for my family. it would forever leave a dark cloud over future holidays for my grandchildren. for the rest of their life it would be sitting there in their heart.
so here is my where there is life there is hope, i hope to spare my loved ones the memory of this loss to be forever linked to what should be a joyful time of year. i hope to see them over the next couple of months. i hope to leave with dignity. i hope to leave knowing that those i love feel my love for them. and dare i hope for you? i hope that you know the kind of peace of mind and heart that i have been blessed with. i hope that you are loved the way we are meant to be loved. i hope that you leave that door open no matter what has happened in your past.
the dr. says 