congestive heart failure has a friend called pulmonary hypertension

January 5, 2012 at 4:03 pm (Uncategorized) (, , )

no one tells you about the every day changes to expect with congestive heart failure.  they can range from the small annoyances such as dry skin to gasping for breath after walking a few feet.  CHF often feels like coming up for air when swimming underwater a bit too long.  the fluid in my case has built up to the point it displaces other organs.  my liver is already enlarged, a by product of CHF, so add about 3 pounds of fluid with no place to go and said liver gets pushed around and creates a level of pain that is quite surprising.  don’t know how others handle it, since I have made pain more of a companion there are times I actually talk to it.  this may need to change as it is now so automatic I may be mistaken for someone with mental health issues.  a few days ago the pain was so intense and surprising I said out loud, “wow that was uncalled for” and poor chris thought I was talking to him.  before going to bed we ( the pain and I) have a one-sided conversation about the limits and boundaries set forth.  it goes something like this, me- okay that is about all I can take for today so just let me get some sleep and tomorrow we can meet again,, pain- basically has two responses, one being a sharp wrenching pain that clearly states no way not tonight and two no response at all. the second leaves me guessing but hopeful, the first lets me know to hold off going to bed as to not disturb my man.

went to the movie last night with a couple of friends, and although I knew it was possible the pain would be coming along for the ride, it struck surprisingly hard about half way through the movie.  luckily I was at a femme kick ass movie with a couple of kick ass girls:)  my resolve to not be broken during this time led to some dilemna.  trying not to bring attention to one’s self may in fact bring attention to yourself.  some things are out of my control, when short of breath gasping for air is not the easiest thing to control. go back to the earlier example, my years of practicing breathing techniques has paid off much to my delight.  even so it could not be entirely ignored.  this brings some discomfort for me just knowing that others are now faced with ignoring the heavy breathing or checking if I am okay.  though their concern is appreciated I can see myself laid out on the floor and saying “really I’m fine.”  yes Ido know how ridiculous it is to lie but that is easier than what would happen if I didn’t.

something I have explored more lately is the pulmonary hypertension that has come along with the congestive heart failure.  here are some of the symptoms for PH:

  1. shortness of breath (dyspnea)
  2. fatigue
  3. leg edema
  4. general weakness (asthenia)
  5. palpitations
  6. feeling of fullness in abdomen (from enlarged liver)
  7. chest pain (angina)
  8. coughing
  9. lightheadedness, dizziness
  10. fainting (syncope) or near-fainting (presyncope)
  11. bluish fingertips or lips
  12. nausea
  13. loss of appetite
  14. hoarse voice

these are symptoms I experience on a daily basis. along wth those of congestive heart failure. I am going ahead and sharing those here and now.  it is alot to take in and some are overlapping.

1.  shortness of breath- You may find yourself short of breath after mild exertion or even while at rest. Heart failure ain’t much fun

2.  fatigue

3.  good days/bad days-  Pay attention to your body and when it says to do nothing but rest, do nothing but rest.

4.  edema – You may swell up at times. Some episodes will be mild. Other times, you may swell up like a balloon.  It can be very scary, especially the first time.

5.  lightheadedness

6.  memory trouble – Like it or not, your brain is not getting as much blood and therefore oxygen, as it wants. Between that and all the medications, you are going to have a lot of trouble remembering things – not “who am I?” but “what was I supposed to do next?” sort of things. this is frustrating for me at times as it can happen in the middle of a conversation, that feeling of  I know this word but just can’t find it.

7.  misc. symptoms (there are more) 

1. dry cough   

2.  dry skin  

3.   palpitations

4.  discomfort- Feels wrong to lie on your left side

5.    numbness-Sitting or sleeping in the wrong position causes your limbs to go numb. Tingling in arms or legs may occur during the day

6.   can’t lie flat may cause shortness of breath 

7.   nausea- happens in end-stage CHF

8.   difficulty sleeping Don’t know why but it’s fairly common. Getting to sleep may also be a big problem. Like we aren’t already tired enough! 

9.   lower leg or foot pain Don’t know why but lots of CHFers experience this (including me), often badly enough to need painkillers

10.    feeling of physical”wrongness” This is impossible to describe , I get this only rarely but when I do, I am pretty sure I’m going to die, it makes me feel so “wrong.” I have no idea what causes it and no doctor has been able to give a reason for it though it is commonly reported by patients.  this has only happened to me 2x. once when I was actually entering end stage and my sypmtoms were at their height and when I had a raging fever due to a kidney infection.

these sypmtoms do not mean that life can not be enjoyed, though technically in end stage heart failure I am in hopeful stage, new year stage and what comes next stage!  don’t let yourself be defined or ruled by these symptoms.  honor them, your body and soul.  gonna take a break and think some happy thoughts along with some breathing.  maybe text some friends and family, we must all make our choices in how we live our life, I choose to dance in my dreams and love in heart.  I do not want anyone to compare their experience to mine as we are all on our own journey, your symptoms may be worse or hopefully not as severe.  if you are the caretaker of someone with this disease I encourage you to talk openly, ask your questions now and take care of yourself.  you deserve to be cared for as much as your loved one.

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