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 Nicknameless
Posts: 4565
  
Location: I can see the end of the world from here! | Although I cringe to put my personal problems on here...I need some help & I don't know where else to turn except this wonderful forum of massive info!!!
My husband's been in/out of hospitals all winter...loooong story. It started with his doctor suggesting a neurologist for a possible 'movement disorder' (dystonia...of which he's yet to test positive for...we don't think he has it). The neuro said the CT found where he'd had a small stroke at some distant time & his carotid was blocked (85%), in the meantime his dr. put him on Celebrex for osteoarthritis...this did not agree w/him, caused extreme dizziness, then was put on Arthrotec along w/trihexyphenidyl. The pharmacist accidently filled the trihex...prescription w/5mg instead of 1mg. He took this for 5 days. He became so confused & a walking zombie along with hallucinating 24/7 & having panic attacks. Then it paralized his bowels and God only knows what else internally causing him to 'blow up' and affecting his ability & 'space' to breath. Christmas Day...go to a larger hospital where he'd had bypass surgery in 1999 & still maintained medical check-ups...no blocked carotid. They put him thru the Pulmonary Breathing Test (while he's still 'blocked')...sent him home w/inhalers. Meanwhile the doc puts him on Clonazapam (for anxiety) and Tramodol instead of Arthrotec. None of this did anything to alleviate the pain, hallucinations or paralized stomach. After much screaming (me) I finally got the neurologist to 'get' that 2 weeks of blocked bowels was NOT ok. That is when he found the prescription problem...ok....we think we're on the right track to recovery. Paralysis starts going away...
Then a heart cath February 3rd to check the old grafts...oh yeah, he's always had a heart murmer, leaky aortic valve & congestive heart failure they've been 'watching'...his original cardio dr. retired :(
So...all looked great they said...still didn't explain the shortness of breath...or the 'impending doom' feeling.
I'm talking about a man who has worked hard his entire life...he's been run over, hit by lightening three times, horse wrecks, plane crash blah blah blah...a tough man among men. Not a whiner...doesn't really feel pain so much.
Yet...a kind, gentle soul.
Feb 28...rush him to ER in another state (closer...and losing confidence everywhere else). Emergency gall bladder surgery. Stones, infection, lesions....yippee! Maybe that was the problem all along...we hope. Well, I guess that dr. didn't take serious all the previous history...or the fact that his potassium levels were high (5.3) compared to sodium.
Home on Saturday...back in local hospital Monday. Lasix...swelled up all over.
I had told his primary care dr. to do something! My husband is dying.
Echocardiogram....oh...he's a canditate for valve replacement, aortic stenosis...
Salt Lake City: Heart cath to check interior pressures & mitral valve, too. So 2 hours later the doc comes out to tell me my husbands a very sick man. Acute heart failure. ICU for 4 days then another 4 in a private room....recommend an LVAD (Left Ventricle Assist Devide) if meds don't work, Clint says he'd rather just die. So here we are...he was 35 pounds lighter after the stay and continues to lose weight daily. Can't eat, can't sleep...potassium high again, sodium low...passed out Saturday after stupidly lifting wood pellets into stoves. I called ambulance as his bp was 44/28 before they got here...it went back up to normal within minutes though...heart dr was not surprised @ his follow up appt Monday, just said no more lifting...has another appt tomorrow.
If you've read this long & can follow all this...thank you!
'I' think his main issue now is food! He's starving...and his diet is so restricted, what he needs he can't eat. All the fruits & veggies just aren't cutting it. Do we need a nutritionalist? It just doesn't seem like the doctors are 'connecting the dots'...I'm not dissing them, just trying to figure out what to do as he's not a lost cause! His EF (for those that understand) was 33%....not a death sentence.
I sincerely thank anyone who has info to share & possible solutions as I'm just about at the end of MY rope. |
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 Accident Prone
Posts: 22277
 
Location: 100 miles from Nowhere, AR | Most doctors are not as educated in nutrition as they need to be, but not all nutritionists are current in their education (my hubby's step-mother comes to mind--we about came to blows last year over what she fed my hypoglycemic child). I would definitely give that a try, tho, as something is obviously out of whack--be picky about who you listen to and follow your gut feeling. Praying for him. God is the ultimate healer. 
Edited by Three 4 Luck 2014-04-02 9:48 AM
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Hungarian Midget Woman
Location: Midwest | No advice, but I'm very sorry you are getting the run around from these doctors. Are you near a large city? Or a University Hospital? If it's possible to travel, I would go and get a second opinion. There might also be a new technology or surgical protocol they can do instead of what a local hospital is capable of.
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 The Famous Hot Wing Chicken Girl
Posts: 2964
| I have no advice other than to seek a nutrionist but please know that I'm praying for you and your dear husband! |
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 Texas Taco
Posts: 7499
Location: Bandera, TX | Wow! No advice just hugs and prayers.
May I ask how old your husband is? What a terrible ordeal. |
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Expert
Posts: 5321
Location: Texas | I can hear the frustration in your post and also the love for a great man! I pray the Dr.s can come up with a solution and that your husband feels better soon! You both have been through so much. Many many hugs and prayers!! Maybe Dr. Scott can suggest some alternatives! |
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Nicknameless
Posts: 4565
Location: I can see the end of the world from here! | We finally got into the University of Utah...they're very good I think! They're trying to get his blood levels figured out while I'm trying to figure out how to feed him. From what I understand, once you have your gall bladder removed the stomach doesn't digest fats how it should...I'm thinking this is why he's losing so much weight. The heart dr gave him the green light for cardio rehab (we're in the boonies so we get to monitor that ourselves) but he's so weak...he's starving, literally before my eyes. Loses 1-3 pounds a day. |
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Nicknameless
Posts: 4565
Location: I can see the end of the world from here! |
He's 65. And thanks all of you for the prayers...they're much needed.
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 Swiffer PIcker Upper
Posts: 4015
Location: Four Corners Colorado | Sent you a PM
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 Can You Hear Me Now?
Location: When you hit the middle of nowhere .. Keep driving | I'm sorry your family is going through this. I have had my fair share of doctors and nurse mishaps and confusion with my father since he was paralyzed and I understand how frustrating it is.
What I am thinking your husband needs is a meeting with everyone. I'm getting this feeling that even though records are available to the other doctors there are too many different things going on at once. I would approach the doctors that see him on a regular basis and see if there is a possibility of a conference call to get everyone on the same page. I'd think that one solid plan of action would be better then multiple. Put a nutritionist in the mix as well so he can work on a diet plan to suit your husbands needs.
JMHO but we did this with my dad and it helped a lot (minus the nutritionist). He has 4 doctors and then home nursing multiple times a week that comes through; and they all try and do something different and their own way. Having everyone on the same page makes for less stress and confusion. I just don't know if every doctor would agree.
ETA: I am not going to make a suggestion on what it could be or if the prescriptions are counteracting each other because I don't have the knowledge in that area. But I am wishing you guys all the best and lots of hugs and prayers.
Edited by ndiehl 2014-04-02 10:08 AM
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The Advice Guru
Posts: 6419
| Start researching internalists in your area. And go and see him. This may end up being expensive, I would suggest consulting a lawyer regarding the px mix up, as prescriptions are supposedly independently double checked.
I would be looking at kidney function tests, how is your husband urinating? Is he on anything for the high potassium, as getting into the 5's can cause heart problems. Kayexelate is the px drug I am thinking of
Are the bowels working?
Is he on any anticoagulants? And what meds is he on? I also suggest consulting with someone who works entirely with medications, as he may need different meds.
I would suggest speaking with a dietician.
Where do you live, maybe someone on the board can point you in the right direction
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 Reaching for the stars....
Posts: 12708
| You need a medical advocate -- but YOU may have to be that person!
All these medications are researchable online. Do it. Print or write it all out. Connect the dots. Call the prescribing doctors on anything that doesn't sound right. Question EVERYTHING. Make them explain it to you. You and your hubby are the paying customer here, you are not out of line questioning and demanding explanations. Get second opinions if you need to.
My sister and I had to sit on the rehab facility daily, sometimes more than once a day, to keep my moms medications right. I spent a lot of time online researching. My sister has the education to understand this stuff so she was prime, but I got pretty educated on a lot in a short time too. You don't have to understand the chemistry - contraindications and side effects are written for every medication.
MANY prayers for a smoother time ahead!! |
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  Whack and Roll
Posts: 6342
Location: NE Texas | I don't have any advice, but my thoughts and prayers are with you! Hoping you are able to get everything figured out, medications regulated, and I pray that your hubby is able to come home and enjoy life pain free. Hugs to you, I know this can't be easy.  |
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Expert
Posts: 1543
Location: MI | weekendgambler - 2014-04-02 9:58 AM
I can hear the frustration in your post and also the love for a great man! I pray the Dr.s can come up with a solution and that your husband feels better soon! You both have been through so much. Many many hugs and prayers!! Maybe Dr. Scott can suggest some alternatives!
This... and many, many hugs. |
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Nicknameless
Posts: 4565
Location: I can see the end of the world from here! | cheryle, bowel function is normal now, his creatins come back good (kidney's)...I'm sure it's a matter of getting the meds right. They did have him on 40mg lasix, I cut him down to 20 until his appt, dr agreed...then they took him off it completely, however, he's still on spironolactone which helps the body retain potassium & lisinopril for hbp which also keeps the potassium up...
I've read & studied so much of the meds...just trying to connect things myslef so I can get the doctors on the same page. Worse than herding cats...much worse! |
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 Roan Wonder
Location: SW MO | I don't have any advise just hugs & prayers |
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 A Somebody to Everybody
Posts: 41354
Location: Under The Big Sky Of Texas | No advise here either, just hugs and prayers for the both of you |
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 Popped
Posts: 20421
Location: LuluLand~along I64 Indiana | i agree on researching for an internalist... that is their specialty to connect dots.... i know that my bosses mom would not be alive today had they not demanded one for her care. mm god bless you for taking such good care of your other half.... |
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 Shelter Dog Lover
Posts: 10277
| lonely va barrelxr - 2014-04-02 10:02 AM You need a medical advocate -- but YOU may have to be that person!
All these medications are researchable online. Do it. Print or write it all out. Connect the dots. Call the prescribing doctors on anything that doesn't sound right. Question EVERYTHING. Make them explain it to you. You and your hubby are the paying customer here, you are not out of line questioning and demanding explanations. Get second opinions if you need to.
My sister and I had to sit on the rehab facility daily, sometimes more than once a day, to keep my moms medications right. I spent a lot of time online researching. My sister has the education to understand this stuff so she was prime, but I got pretty educated on a lot in a short time too. You don't have to understand the chemistry - contraindications and side effects are written for every medication.
MANY prayers for a smoother time ahead!!
This. My niece lived her life in and out of the hospital. My sister became a walking encyclopedia on her condition. She asked for copies of everything and went over them. I can't tell you how many times she connected the dots when the drs didn't. Don't be afraid to step on toes. Prayers |
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 Expert
Posts: 1930
Location: Not where I should be... | Hugs and prayer to you. I hope that you can get some answers very soon.
I have a disorder that causes my body to absorb too much water... all because of a cyst on my pituitary. This washes out my sodium and makes it dangerously low. I have been able to manage my problem by fluid restriction. I used to drink lots of water to be healthy... it was killing me! I had severe headaches and extreme confusion and dificulty functioning.... I had way too much fluid in my body and my heart was having an extra hard time working. It took my demanding tests to figure my problem out.
Soooooooo many drugs alter your sodium and fluid balance. Please be sure to check on that possibility with his meds and be sure that he's not drinking too much water that is diluting his sodium. You did say that his kidney tests were ok so I assume they check output and osmoality, but I just wanted to point how so many drugs alter our body's natural balance... I have to even watch taking ibuprophen. |
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