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Author Topic: Holy crap my health is flying away  (Read 9635 times)
gothiclovemonkey
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« on: August 09, 2012, 05:40:20 PM »

I never wanted to believe that i was actually sick, that i actually had kidney failure, that i wasnt invincible.
Ive been treading along for 5 years not really being the most active patient in the world, my mistake yes, but who really wants to believe that tehy have something wrong with them? who wants to take a bazillion pills a day? who wants to follow a crappy diet that wont even help u lose weight lol

I went to the ER, short of breath, thinking probably fluid overload. The admit me, end up saying i have pneumonia. walking pneumonia.
not a big deal, ive had it a few times now... they decide to run some more tests, some because i tell them about my arm issues ive been having, so they want to make sure its ok. other tests, im really not sure why they did them....
SO, they said i need some work done on fistula, ok no biggy, been there done that, a few times.... and send me home because until the pneumonia clears, theres nothing they can do.
Tonight, i get a phone call... from the dr who sounds strangly nervous, which immediately kind of freaks me out. she tells me that my heart isnt doing to well, i dont really understand what is wrong with it, something about a normal heart does something with blood at a rate of 60, mine is doing it at 40, something about the blood being pushed out of me to the rest of my body isnt strong enough? and my front bottom part of my heart isnt moving at all, and my heart is enlarged. she said she cant really tell me much about how bad this is, because she isnt a heart dr, but that its not good and she was sorry to tell me over the phone, but wants me to start taking asprin right now, and she will call in the a.m.

now i hate when people remark at my age vs. illness, but jessussss im 28, and i have a young child, what the hell am i supposed to do? whats best for him? my dad offered to take him for the school year in case this happens again...but i cant be away from him that long, they said i could see him anytime i want, but thats every min of every day lol idk what to do.... im so upset, and confused, and i just want whats best for him... why do any of us have to deal with any of this?
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"Imagine how important death must be to have a prerequisite such as life" Unknown
HemoDialysis since 2007
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boswife
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us and fam easter 2013

« Reply #1 on: August 09, 2012, 06:01:59 PM »

Gothiclove, try your best to keep calm and yea, it doesnt sound so good but!!!!! my old mans heart has same issues and he's still truckin along, just things your going to have to do to build it bak up some.  I know some can be worked on with exercise, and others, well pills.  There is hope so for tonight, try to keep calm, know your in my prayers, and let us know whats going on as soon as your comfortable..  :grouphug;  and many many  :pray;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
MommyChick
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Me & my precious Miracle !!!

« Reply #2 on: August 09, 2012, 06:39:48 PM »

Many thoughts & prayers headed your way!
Hopefully your doctor is just over reacting since she did say she isn't a heart doctor.
Good Luck & Lots of Prayers  :pray;

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~ Hello All, My names Marna ~

- 1995 - 12 yrs old found out my kidneys were both failing
- 1996 - Dec. 3 I received my 1st kidney transplant at age 13, after 7/mths on the waiting list
- 2005 - In Aug. transplant failed after 9.5 years, had to have a nephrectomy due to being very ill & massive hypertension
           - End of Aug. 1st time on dialysis
- 2006 - Had my fistula placed & ready to go
- 2010 - My little Miracle was born 6/mths into the pregnancy, weighing 2.4 lbs & 13.25 in long
          - Found out my PRA is 100% & I have antibodies that CAN'T be decreased
- 2013 - Oct. 2nd  *** I finally received my kidney!!! ***
          - Dec. 3rd I had 3.5 parathyroids removed, due to them interfering w/my new kidney.
Cordelia
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« Reply #3 on: August 09, 2012, 06:44:35 PM »

Do what your heart tells you. Listen to your heart.
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
jbeany
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Cattitude

« Reply #4 on: August 09, 2012, 06:51:16 PM »

Okay, I know it's hard, but try not to start envisioning worst case scenarios until you talk to the doc and get real results.  Keep in mind that part of the doc's panic might have been from fear of getting sued for not catching something important while you were actually under her care!  I wouldn't make any decisions about where your son should be living until you have some actual news and a treatment plan.  This may mean they can do something to fix this, and it may just be just another long-term problem to add to your list.  (We've all got those lists, and after a while, I just figure "What's one more thing?")  Hey, if the doc was in total terror, she'd have had you come back to the ER, not told you to take an aspirin and wait for a call in the morning.

Hang in there!   :cuddle;
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

gothiclovemonkey
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« Reply #5 on: August 09, 2012, 09:31:42 PM »

i feel so sick to my stomache with stress...
i know i shouldnt worry about the what ifs so much, but how can i not? it isnt just my life im dealing with. hes 8, and he doesnt understand things yet, and i dont know how to prepare him, in the event something bad did happen. i want him to be prepared as much as possible.
one thing i dont understand... maybe someone here could, but i dont so much care that this is happening to me, but to him... he doesnt deserve this crap. he deserves the best.... i dont think i give him that. i love him so much and idk what to do.
pj has  already told me that if something happens to me, he couldnt keep jareth even if he wanted to, he works odd hours, and he wouldnt be able to handle him. and this week i had to send him to my dads while i was in the hospital.
and i just dont know how to feel about that.........but i know that pj isnt his father, and its not his responsibiblty.
this has been weighting on my mind for a while now, but this week has really opened my eyes, especially now, with my heart acting up.
id be having chest pains but i blew it off because i have panic attacks often, and athsma too, so i didnt think anything of it. im under way to much stress.... part of me is thinking i should move back in with my dad.... but what kind of relationship will that be for pj and i? then again, or relationship is more like a friendship anyway.....
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"Imagine how important death must be to have a prerequisite such as life" Unknown
HemoDialysis since 2007
TX listed 8/1/11 inactive
LISTED ACTIVE! 11/14/11 !!!
Traveller1947
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« Reply #6 on: August 10, 2012, 02:05:12 AM »

Try to calm down, goth.  You don't where you stand until you talk to the cardiologist, so no point in worrying in advance.  Chances are, your heart problem can be managed with medicine and/or lifestyle changes and won't require that you be separated from Jareth.  Sending many, many good wishes your way and prayers to keep you strong. 
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amanda100wilson
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« Reply #7 on: August 10, 2012, 07:27:10 AM »

I had an ejection fraction of 34, and congestive heart failure.  my hear recovered so there is a chance tha yours will too. I do have an enlarged heart, a side effect of long-standing kidney failure.  suggest that you give your doctor a call and get an immediate referral to a heart doctor so that toucan be adequately and accurately assessed.  thinking of you.   :grouphug;


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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
gothiclovemonkey
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« Reply #8 on: August 10, 2012, 08:46:23 AM »

The concern with Jareth was there before this current heart thing. I seem to always be sick or too weak to really do much of anything, i do what i have to but he needs and deserves more than that. im concerned also that if something were to happen while at treatment, i couldnt make it in home in time for him to get home from school, or if im at treatment, and he needs to come home... theres just so much... idk what to do.

The doctor is setting something up with a heart doctor, but she said they cant really do anything until after the pneumonia is gone.

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"Imagine how important death must be to have a prerequisite such as life" Unknown
HemoDialysis since 2007
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AnnieB
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« Reply #9 on: August 10, 2012, 09:50:43 AM »

 If you're having chest pain, you might want to consider going to the ER. I'll be keeping you in prayer for both the health concerns and the worries about Jareth.  :cuddle;

Anne
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jeannea
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« Reply #10 on: August 10, 2012, 11:55:27 AM »

I'm so sorry you're having this problem now too. It's hard to know what this heart thing really means. Try not to panic.

One thing you might want to consider for your son's benefit. Do you have your legal papers in place? It's important to protect him. You need a will that states who you want to take care of him in case something happens to you. Most of us don't want to think about the worst happening but you need to make sure he is protected.

I think you'll be ok once you have a cardiologist taking good care of you. It's really hard to be your age and sick.
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monrein
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Might as well smile

« Reply #11 on: August 10, 2012, 12:11:57 PM »

I can only imagine how overwhelming this all is GLM but as others have said you must try to stay as calm as possible and slowly get things in order one by one.  The doctors should be able to help with what you need to do to best care for yourself and your part is to do those things.  Regarding your son, you do need to have backup plans in place in case you end up in hospital suddenly and with plans in place hopefully you can stress out a bit less in the day-to-day.  You also need longer term plans like where he would live if anything were to happen to you etc. and all of this is absolutely true for everyone with kids or responsibilities to others, regardless of their immediate health situations.  Emergencies aren't planned events and we are all at the mercy of the unexpected.

One day, one thing, one action at a time Jen.  Keep breathing, keep moving, keep planning, take care of yourself and keep doing whatever little things you are able to with Jareth.   :grouphug;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
gothiclovemonkey
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« Reply #12 on: August 10, 2012, 02:56:36 PM »

i have a will already, unfortunately, i may need to revise it... i had originally put that my father would take him, and in the event that he passed, my brother and his wife would but now they are divorced and my brother has lost his mind so that wouldnt be a good idea... i really dont know what id do now... i dont really have other family that would even concider taking him. And outside of IHD, i dont really have friends, i mean, offline, i dont have friends...

i have an apointment coming up next week
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"Imagine how important death must be to have a prerequisite such as life" Unknown
HemoDialysis since 2007
TX listed 8/1/11 inactive
LISTED ACTIVE! 11/14/11 !!!
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