let’s put the congestion back in congestive!

November 12, 2012 at 2:20 am (angina, defibrillator, end stage congestive heart failure, gratitude, heart failure and exhaustion, how does it feel to die, living with dying, symptoms of pulmonary edema, sypmtoms of pumonary hypertension) (, , , , , , )

after our trip to the coast i came back with an additional 13 pounds of fluid in my body.  i feel like a balloon that has been inflated beyond capacity. tie a string to my toe and put me in a parade! of course i would never fly with all that extra weight. not like i am gonna blow away here anytime soon.  day after day, one reason or another i have not taken the meds to help.  the fluid pill makes me itch from the inside out. it feels like i could just scratch my skin off to get to where the darn itching is.  my dr. has even given me meds to counteract this effect. there are other times i itch like this and it is just the combination of meds i take along with the disease.  all that can be done to help has been. this is just a case of it is what it is.  last night after a great day out i decided to bite the bullet and take the fluid pill. it is much stronger than the lasix which is the first prescription most get.  this will leave my skin dry and even cause some joint pain but i will be able to breathe better.  so here i am this morning 5 lbs lighter. this means, and i already knew this, that i will need to go through this one more time to get back to what is normal for me.

i am not talking about this just to be complaining. there is actually something very nice, for me at least, about this.  friday night i got together with a friend who also has some of the same heart issues as i do.  so that is not good for her and i hate it for her.  she has two boys who are still young and now a new granddaughter.  she has had enough loss in her life to deal with.  all of this aside we went out friday night and it was just fun.  neither of us had to feel like we were holding someone else up or taking too long to walk.  when you are out with someone who doesn’t have any health problems they are walking much faster than we can. sometimes there is the look back to see what happened to you and other times people get to the table and realize they are alone.  most of the time we all just laugh so no feelings are hurt.  going out with someone who can’t walk any faster than you means you both get there at the same time and you both understand.  no apologies are needed.  a whole evening of not feeling like i am slowing down anyone else.  i was exhausted by the time i got home but felt so great at the same time.

not looking forward to taking another pill but i know how fortunate i am that there is a pill.  it has come to pass that i know how my grandmother felt.  she used to talk about how much the world had changed since she was a girl and when i think about how much has changed since i have been alive.  things that use everyday like the microwave have been developed in my lifetime.  medicine has really changed, what is being done with robotic surgery completely amazes me.  medication is nothing short of a miracle.  things that in the past were considered terminal/incurable are not only being cured but those things that used to cause great suffering are now an inconvenience.  just think, cancer that was a death sentence is now treated and in months the patient is cured!  even if not cured the years added by modern medicine is astounding.  i have a defibrillator in my chest!! a pacemaker to set the rate of my heart, medication to push fluid out of my body.  that we can create a human being and give that human being life is unbelievable.  to keep a human being alive longer, and not just alive but alive and living a happy life, is incredible. glad i got sick now and not a few years sooner. grateful for the time i had with my friend and grateful for the time we both have been gifted by the medical innovations.

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you do the math

July 28, 2012 at 7:56 pm (dying, end stage congestive heart failure, gratitude, how does it feel to die, symptoms of pulmonary edema, sypmtoms of pumonary hypertension, Uncategorized) (, , , )

i am exhausted.  if you have ever been tired of being tired then you get my drift here.  in the past while going to grad-school, working and interning more often than not if i had any spare time it would have been used to get some much-needed sleep.  while in the army, where there is no such thing as a 40 hr work week, and trying to raise a child, sleep was a rare and treasured time.  like most of the world i have known exhaustion but not this kind.

this is different and the knowledge that it comes from being ill does not make it any easier to endure or explain. it is an embarrassment that at times i do my best to hide and other times just avoid explaining yet again why i am not talking on the phone or going out with friends.  even with my husband there are times when it seems like too much to ask, just how far can any one person’s understanding go?  how can i reject an offer to go out once again, especially knowing he will not go without me? so smile, say give me 30 minutes and do whatever it takes to get out that door and in to the car.

just breathing is a job. seriously it is hard work and part of what exhausts me.  if i eat i know that i am  going to need to rest for a couple of hours afterward.  that’s right, eating for me is like jogging a couple of miles or so.  at times just opening my eyes is so much effort i may sit here with them closed.  this is not just how i am affected.  anyone with congestive heart failure suffers the same problem.

here is where the math comes in.  with congestive heart failure the congestive part is the fluid that builds up in your body because your heart can not pump hard enough to support the circulatory system, and thus push the fluid through the organs needed to then push it out of your body.  so it builds up, many women know how it feels to once a month get a pound or two of fluid and they think that is, and it is, uncomfortable.  so imagine if you woke up with 6 to 8 extra pounds of fluid.  first of all try to picture what that many pounds of fluid looks like. how many gallon jugs would that fill? now ask where in your body is all this fluid going to be held?  of course some is in the extremities, legs, ankles and hands.  the rest is in the trunk of your body.  so start with a gallon jug of fluid,  picture that being poured in to your abdominal cavity.  just how much “extra” room do you think surrounds your organs?  so all this fluid is pushing against your heart, liver, kidneys, pancreas and any other organs that have not been removed.  lungs no longer have the ability to fully expand.

i am exhausted, luckily it doesn’t take any energy at all to think about how wonderful my life is.  how much love i have to give and am given so freely by others. we live in such a miraculous time and place.  it is hard to breath and yet i am breathing, that is a gift that may end at any moment and that is okay.  like most gifts we enjoy them and treasure them.  i grew up very poor so there weren’t a lot of gifts, for this i am grateful. it taught me to not ever take a gift for granted.  life is good, life is our greatest gift.

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