Hi y'all. I'm new. Please let me introduce myself.
Hi DU,
I've met my post count; so I thought I'd introduce myself. I'm UUN (unique user name.) I found the DU about a year and a half ago. I have been a lurker. About the time I decided to be a participant, life sure pulled a fast one.
I know this is going to sound woe-is-me and over-the-top, but I swear it's all true. Three months ago my husband had 3 minor strokes, all on the same day. He had THREE strokes---cerebral vascular accidents, not TIAs (that's details for the initiated). Dear Husband (DH) is only in his late 40s.
Doctors said that if you have multiple strokes on both sides of your brain, it almost always comes from the heart. Sure enough my husband had a vegetative mass on his mitral heart valve. So we went to the best facility in the state to get his heart valve replaced. Surgery went fine. Three days after he was discharged my hubby was complaining about swelling and pain in his feet.
I searched through the discharge papers and could only find an 8 to 5 number to call. Alternatively, I called the home-health care nurse. She was disinterested. After checking my dear husband's vital signs, we decided to call the 8 - 5 number in the morning.
That Monday morning my husband woke up with Afib and a pulse rate of 200. After a trip to the local ER, DH was flown back to our state's preeminent hospital where he was diagnosed with heparin induced thrombocytopenia with thrombosis (HITT). If you ever have open-heart surgery, you will most likely be given heparin, a blood thinner. What doctors don't tell you is that between 1 and 5 % of people given heparin will have HITT---that's right, between 1 and 5 %. Why they can't narrow the numbers further is a question for a capitalistic, for-profit healthcare system. Of the people who develop HITT, 30 % will die; 50% will lose limbs. I know those numbers look funky. But I can't find better data. My mind goes to conspiracy theories that say the health-care system is deliberately concealing that information.
After another two weeks in the hospital, my husband was released to in-patient physical rehabilitation. His feet looked bad. They were badly discolored up to his ankles. The doctors assured him he was fine. He would lose a few toes but otherwise walk normally. Dear husband (DH) spent three weeks in physical rehabilitation where he learned to walk on dead feet. Two days before Thanksgiving and with little notice, the hospital declared him rehabilitated and discharged him. Did I mention this is our state's preeminent health-care facility? They released him with dead feet.
Let me be clear, DH had dry gangrene on both of his feet up to his ankles. This seems obvious now; but looking back I see that the doctor in charge of physical rehabilitation never once looked at his undressed wounds. Why didn't I insist that his doctor examine his feet? I know now that it is a false assumption that your doctor is paying attention and giving you the best care. The nurses administering care to the wounds are not necessarily passing on information to the doctors in charge. You'd better be very active in your own healthcare ESPECIALLY if you are in hospital.
At home, we made arrangements to see a wound care doctor. After a few visits, the woundcare doctor said that DH's limbs needed to be amputated. We got a second opinion. The second opinion was, "Uh, yeah, they need to amputated and don't walk on those feet. They could fall apart." So up to this point we had been told, "Walk! Walk! It will do your body good." ---This from a doctor who never once looked at his feet.
Mid December DH had his right hand and both feet amputated. He is in good spirits. He is a real inspiration. Our healthcare system is not. We probably have the best insurance our state offers (BCBS). We went to the best facilities. Of course, some of our woes are attributable to bad luck. But a good portion is due to a malignant healthcare system.
So our healthcare is why I have just met my 10-post count. I've been a bit pre-occupied. I hope to be a more active participant as time heals.
Life is not all bad. We are debt free. We own our house free and clear. We have over 20 years of a true and loving relationship. My DH is loved by all who meet him. I am a recluse. Funny how that works. His well-built social network has rallied round him. His co-workers donated more than three months of paid leave. DH is an inspiration. I know that he will walk with prosthetics just fine. He is so sweet and open. I confess I am a bit bitter, but I try to do better. I'm not bitter at my DH. I know he was wronged by our system. I'm trying to move on---spreading the word about heparin---doing what I can---gathering strength from you, Democratic Underground.
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Welcome to DU and I am so sorry about your (and this country’s) health care plight
I hope you always find friends and solace in all your days
As a recluse myself I know how vital this site is for us. Being a recluse doesn’t mean not being deeply interested in what’s going on in the world. DU is perfect for finding out what you ARE interested in. And it’s got some of the most intelligent and savvy people you can imagine. And, as you know there is as much heart here as anyone could ever need!
I get it... mine is the same story, a few different circumstances... spend some time at DU; good place to escape for a bit
it is ok to feel bitter once in awhile, just don't let it affect your health... eat well, stay hydrated
I feel some affinity with you. I too am lucky to be financially pretty secure. House paid off, debt free, and 27 years with the man of my dreams. However, he's the recluse and I'm the social butterfly.
My hubby describes me as one who "speaks doctor" because I've had a chronic condition for over a decade now, and have learned to be an advocate for myself and my family when it comes to healthcare. And, as you have found out, it's not always easy. I'm glad your DH seems to have found some peace with his situation, and I'm so very sorry that you and he have had to go through all of this.
Take care, and welcome again to DU.
What a nightmare you and your DH have been through! Sadly, I'm not very surprised. Healthcare in the US can be a real nightmare. Seems like it's getting worse, not better. Thank you repugs and your crazed efforts to destroy the ACA and cut funding for medical research. 
Sending best wishes to both your DH and you. 
