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.
prenin said,
November 22, 2015 at 5:53 am
Sounds like you have a real battle on your hands!
Yesterday is done, Tomorrow is not given and now is a gift which is why it is called The Present! 🙂
Love and huge hugs my friend always! 🙂
Prenin/
jmgoyder said,
November 22, 2015 at 5:54 am
I’ve probably said this before, Sandra, but your blog should be a book of comfort and guidance to others. You amaze me!
s blake callahan said,
December 9, 2015 at 1:54 am
you honor me with your praise! no book, we all have a story and mine is not so different. love and hugs my friend xxx
Julia Sweeney said,
November 22, 2015 at 8:07 am
I am grateful also , that I have the two of you in my life. You are a gift of love and understanding.
s blake callahan said,
December 9, 2015 at 1:55 am
you are such a special friend to us and you know how we feel about you!
michelle waits said,
November 22, 2015 at 9:48 am
Thank you for sharing your story, when you were ready. I’m so sorry you’re having this experience, but so admire your always positive attitude of Gratitude
s blake callahan said,
December 9, 2015 at 2:08 am
michelle with all that you are enduring to have compassion for others is remarkable. you are an inspiration, i admire that you are able to continue on in life and never complain. i send you love and wishes for peace of mind and heart!
Terry said,
November 22, 2015 at 12:28 pm
I have no words to say. I can only ask our God to keep you strong and pain free as possible. I want you to know how much I love you and care about you. Hugs
s blake callahan said,
December 9, 2015 at 2:10 am
you are so kind and i would love to see you give some of that kindness and compassion to yourself. sending you love and hugs!
Terry said,
November 22, 2015 at 12:31 pm
Mo matter what I think , I,want you to know how much I love you and how much I care about you. Big hugs. I am sending prayers to God eight now for you
Terry said,
November 22, 2015 at 12:32 pm
I meant right now
Linda P. said,
November 22, 2015 at 10:06 pm
I am new to your blog, having found it while searching for symptoms related to CHF. My brother was diagnosed with CHF more than a year ago, and he’s recently experienced some symptoms I worried might be related. Thank you for your honesty when discussing both the blessings and the sufferings related to this disease. Know that you help me to better understand what he is experiencing and will experience. I pray that you have enough relief to find ease during this Thanksgiving week.
s blake callahan said,
December 9, 2015 at 2:30 am
i am sorry to hear about your brother and glad you found my blog. i hope you will find medical information and more importantly patient information, you know the stuff doctors either don’t know about or don’t talk about.
does he have a pacemaker/defib? what percentage is his output? do you want to share what type of symptoms he is exhibiting?
unfortunately i think relief is a dream once dreamed, however, as long as there is hope…..
Linda P. said,
December 18, 2015 at 12:55 pm
A pacemaker was discussed at one time, but he refused it. His ejection fraction–Is that what you were referencing when asking about output?–was at about 38%, I believe, two years ago, but I am not certain if that has changed. His symptoms include edema and shortness of breath after any exertion.
s blake callahan said,
January 2, 2016 at 4:54 pm
if he drops below the 30% (it may vary based on age) the drs. will most likely offer him a combo of the defib/pacemaker. he should certainly be evaluated every 3 mos. to keep things from getting out of hand. edema and shortness of breath just go with the territory, that doesn’t make it any easier to stand by and watch as a loving daughter i realize.
please accept my apology for being so slow to answer. i hope you feel free to come here and ask anything that might be helpful to you or just a place to talk about your concerns and feelings.
Judy said,
November 22, 2015 at 11:11 pm
If you lived near me, I’d be bringing food over and serenading you. For now, I like to imagine it.
It amazes me how you are struggling physically, while at the same time being completely in joy of making it through another day. What can I say? You are an inspiration to every human on this planet. And most certainly, me.
Hope you are able to have some better moments so you can really celebrate the holidays this year with gusto. Love you.
s blake callahan said,
December 9, 2015 at 2:31 am
i can see it and i am at peace. thank you my friend
Linda P. said,
December 5, 2015 at 4:45 pm
Thinking of you on this day.
s blake callahan said,
December 9, 2015 at 2:32 am
i thank you