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My story
I am very new here. I thought I would write a bit about me so you all have a better idea where I am coming from. It is quite long, so I will summarize it by saying that my wife's life-long illness caught up with her and took her from us one month after her 41st birthday. Her death was likely hastened by one big mistake on my part and a plethora of really bad moves on the part of some very ignorant and blind doctors.
I could write a book about the events surrounding my wife's death. In fact, I am going to do just that. A kind of owner's manual for SLE/MCTD (systemic lupus erythematosus/mixed connective tissue disease) patients. Something written from the perspective of a patient and her husband regarding the difficulties that others may run into. And maybe, just maybe help to prevent someone from going the same grief we did. The story surrounding my wife's death is heartbreaking to say the least. It is a tale of ignorance, incompetence that is almost criminal....and her brave, fighting spirit that got her to spend 41 years on this planet.
My wife (Ruth) and I were living in Arizona when she passed away. We had just moved there, only spent about a year in the desert. We had lived in Wisconsin for about 10 years prior to that.
That’s where the big part of my book comes in. Getting her to a rheumatologist was a nightmare once we got to Arizona. In fact, she died before she could get an appointment with one. We moved there in April and the soonest she could get an appointment was October. If she had been a cancer patient, surely we could've gotten an appointment with an oncologist right away. Heart patients get to see cardiologists. Kidney patients get to see nephrologists. I didn't understand what the problem was. An SLE/MCTD patient needs their specialist too. The "S" in SLE stands for systemic. This is a "whole body" illness.
Anyway, she ended up in the hospital with pneumonia two weeks before the appointment and then once in the hospital they flatly refused to bring in a rheumatologist. In fact, I actually filed a complaint against a doctor who not only refused my request for a rheumatologist, but was downright insulting about it. This internist actually had the gall to “quiz” me on why Ruth needed a rheumatologist. And then, when I showed him up by displaying my knowledge of antiphosolipid syndrome and how it related to her pneumonia, he lied to me and said “the body doesn’t work that way”.
She was in the hospital for a week before she had to be put on a ventilator. She was in a drug induced-coma for two weeks, the maximum time allowed, before they put a tracheal tube in and brought her out. By early November she was in a nursing home/rehab centre. She was on both a vent and dialysis. Her kidneys shut down thanks to the antibiotics they were using. Even though she was an SLE patient, her kidneys remained very strong most of her life.
She was in and out of the hospital several times between November and February. She became very frustrated because she couldn't talk thanks to the tracheal tube. I had to do all her talking for her. In addition, she couldn't move thanks to her muscles atrophying while in the drug induced coma.
So she felt very helpless and scared. She was watching these doctors with no clue how to deal with an MCTD patient and flatly refusing to call in a rheumatologist. They were trying to manage her platelets with transfusions, manage the recurring pneumonia and other issues. At one point, they actually wanted to do a bone marrow biopsy. The first hematologist was ready to jump right in. I said no and refused to sign the consent until he consulted with me and Ruth. He explained that they needed to figure out why she kept having low platelets. I explained that from what I knew, most lupus patients have blood issues happen AFTER the blood leaves the bone marrow. Not before. I also told him that thrombocytopenia was a classic symptom antiphospholipid syndrome, something she had been dx'd with 20 years earlier. So what it boiled down to was you had an SLE patient with comorbid APS who was being treated with vancomyicin, an antibiotic know for wreaking havoc with the blood. I told him that I could not understand where his confusion came from. After consulting with a second hematologist, the finally decided against it.
Finally in February, she came home. She still had a tracheal tube in and needed IV drugs and tube feedings. Despite physical and occupational therapy, she still could barely raise her arms let alone get out of bed. I had to do everything for her. Tube feedings, mouth feedings, drugs by mouth, IV drugs, suctioning her trach tube, bathing, toileting....everything. She couldn’t move at all. I slept maybe 2 hours a night. At one point, I actually passed out from exhaustion. But I had been promising her that once she got home, then she was MY patient and I would do everything I could to make sure she would once again prove the doctors wrong and make a full recovery.
Then, in mid-February, she ended up back in the hospital with pneumonia...which turned in to septic shock...which, thanks in part to the Methotrexate and Plaquenil made it impossible for her to recover. Since I was the one who pushed the doctors to restart her multiple-DMARD therapy, I carry around a great deal of guilt about that. She was put into a drug induced coma about 3 days after admission. After a few days in the coma, her doctors told me there was no hope. It was all over. I fought with them. Begged them to understand how many times I had heard that in the past.
Then they showed me how much blood pressure medicine she was on...and her blood pressure was still way too low. They said they couldn't give her anymore and she likely had less than a day to live. As her medical power of attorney it was my call. I knew what she wanted. I had to take a deep breath and remember that and then make what she wanted, what I wanted.
On the 4th day, with her sisters and her mother surrounding her, I told the doctors to stop all treatment except the sedative. She was gone in about 6 minutes.
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