Okay this could be my last post but I may look into the boards from time to time. I’m not going to give away any details regarding who we are as that is a violation of TOS. But I will give some general news about my mother’s passing and a bit about her struggles.
She didn’t die of EM but of course her disease and the severity of it could have contributed a bit toward her downfall as it affected her ability to do other things and that could bring on health complications that helped to bring her passing. She was on a restricted of her own choice liquid diet, well that is to say she kept from drinking to many liquids. That to avoid pain, and avoiding pain flares resulted in a number of compensating activities over the years which kept building up and up, into a huge number of habits, that were unnatural and somewhat hurtful on her health. She also was getting on in years, being 83 years old when she passed. Her mother lived to a ripe old age of 99 expected her to live just as long.
Even though she had EM and it was painful and she as on a lot of Opioid drugs for pain. She could barely walk that is she suffered from pain from walking and activity so she avoided that. But in the last few months she was standing a lot and trying to clean up or straighten out an area, so she had some seemingly room for improvement and had cut back on some of her pain medication. So things were kind of trending slightly better. But overall she had 7 level pain and 10 level pain flares for most of the past 20 years. Almost always a 7 or 10 but sometimes perhaps so low she didn’t notice. But the 10 level flare was always immediately available suddenly and affected our lives greatly. We did so much for her but always one wishes they could have done more.
About 90 percent of my workload was dealing with her issues and caring for her. So once she passed a HUGE burden of caregiving passed away with her. Leaving a huge amount of time.
What happened was the last 6 to 9 months she was having bowel problems, a bowel prolapse event would keep happening. This is a bad thing to experience and with EM of course it’s even worse. Because in order to operate and schedule one you have to go to the surgeons office and we could barely go anywhere as she was often in such bad shape she was to sick to go anywhere. They also judge the ability to recover based on you’re ability to walk which was not great for her.
What happened as can happen was she had a bad prolapse event where the bowel could not be returned into her body and she had to go to ER and have emergency surgery. They did the surgery and they checked and thought she could do rehab even without walking as she was pretty strong and could do exercises from her bed. She was anxious and troubled and demanding. They removed Ativan from her normal drugs it was greatly reduced and she had it for pain off label and was used to having it to sleep. So she lost sleep and was actually more like sleep walking when awake although they seemed to be unaware of that. She was sent home for rehab, but none was ordered for the house and we had to go to her doctors office but she still had an obstruction that didn’t clear and infection followed. We returned to ER and she had an infection they could not find. They could not find the source of the infection and the infection was cultured once then a second one again, but they could not find out where it was. Maybe lungs, maybe somewhere else. Surgeons would not go back in, although they did remove some of the stuff in the bowel digging it out. Sorry for the graphic info, but this is what happens with bowel obstructions.
The infection would wax and wane. White blood cell counts would go up. The infectious disease specialist said it definitely was an infection not inflammation. I had to believe that. I felt it could be blood thinners and potassium standard for those recovering was sending EM flares and that inflammation could be creating white blood cells elevated and perhaps no infection was there, but the blockage was still evident and surgeons for some reason refused to go back in to find out what happened. She was losing so much sleep and food was barely going in her. They were feeding her via IV then not feeding her. They were measuring food intact but that included liquids so it seemed to be mostly liquid. They seemed to be as much in the dark as we were. I was confused of course and she had flares, but no pain from flares as massive doses of TYLENOL were being given as well as the patch and norco. but little Ativan as they were saying she’s calm. She was calm alright she didn’t even know how to use the call button and was calling for help talking into her PLIFF. She was an ideal patient because she wasn’t using the call button. Probably to out of it.
She needed ATIVAN for sleep, but they were giving her FULL DOSES not many only seven doses of 1mg in the same number of days, but two the last night. She normally took 1/2 mg ativan every four hours. The Ativan may have helped push down her blood pressure and when we arrived in the morning she had already seemed to have a blood pressure crash and 02 crash and was nearly lifeless when we found her gasping for air and with hands upright reaching to heaven. We talked to her and called for help and they had a CODE team rush in. 20 doctors and specialists of course arrived the top team in the hospital what a thing to behold. They said her BP crashed from medication. . . of course it did. But she had delirium likely as well so that may have confused my view of things.
Having seen her not sleep for days without Ativan in a 2014 hospital stay and long treatment and surgery I was used to the no sleep from Ativan. But she was tired. Full code they take her to CCU and they are fighting for her life. She goes up there and we go up to visit her. She was set to be discharged in three days and on heavy antibiotics and then this happened unexpectedly.
So now she had a 50/50 chance. Then they find fluid on her lungs all of a sudden, who knows when that happened. They had been giving her cat scans and found nothing earlier now all of a sudden fluids to drain, probably from a heart issue . . . my guess. So now about 1 hour later I’m waiting and I’m told she bled out, massive amounts of blood on the way to the CCU and they give her a lot of blood and she has 6 units but should have 9 or 10 in her. She has LOW BP and 02 is so low they have to do blood analysis as the PLIFF won’t read it. She also had a VENT and stomach tube put in her. She’s on max BP medication to raise her BP and it spikes to 240/something they stop the meds for a short time. Then her BP crashes back down to low. Below 70 when not pumping and not far above 70 maybe 85/60 or some low number I forgot the exact figures, but she’s on full code. The guy who will do a CAT SCAN drain of her lungs shows up, the surgeons show up. If they can stabilize her they will go in. Now they found the abscess wounds from her surgery and the bleed out likely caused that to be easily found. I could go on and on, but it’s just a steady decline.
BP keeps getting lower and max BP increase and treatment to stop blood from the arms and legs to keep blood in the core means the nerves and muscles are starting to die from lack of blood and her kidneys fail so she needs dialysis. She can barely stand EM much less dialysis and a tube and feeding tube to breath and eat from. She has limited blood transfusions left and blood pressure keeps slowly going down. She had a living will and didn’t want to live as a vegetable or in a severely crippled state. She actually had been hoping and praying for death to go to heaven for months now anyway. Asking her prayer partners to pray that she dies. Well now she is out of it and passing. So when the BP gets below 70 for the high figure also the VENT is putting air in her at 15 per minute but she is breathing at 25 per minute to help get 02, well once her BP crashed that low and she has MULTI organ failure already, it was time to let her pass.
So we told them to stop the BP medication and her BP continued to go down for 15 minutes and she passed away. Of course it’s a shock to see anyone pass, but we knew where she was going to a better place and she suffered so much with EM for the past 20 years, we knew she was in a better place. Of course anyone who loses a loved one wants to blame the hospital although they truthfully do everything they can and have limits to what they can do. No matter how I replay it or analyse it, the end result will always be the same. The fact is she didn’t heal properly and bleed out and no amount of medication would have stopped that. She was literally on the way out the minute she left to go to ER and of course in the end medical science can kind of determine how you will go with the decision on what things to stop. She almost died 2 months earlier and both she and I thought she was going to pass away. And in that ER visit she went from Darkness to light and started praying and preaching and prophesying and speaking to the wishes she had for her children and loved ones and her feeling of our calling. And it was the greatest contrast of darkness to light I ever saw. It was amazing that day about 2 months earlier.
She had the perfect script or words it seemed to pass away and said all the words and I recorded almost all of it because I was alone with her and her children and husband were not there. Then when she died, there was no words, but I already had them from the 2 months before. So she passed likely without pain and perhaps some would say she was gone and her body was just functioning for as long as 8 hours but it’s difficult to say. She was not very responsive at all for 12 hours before she passed. But we always assume they are still there and can hear us. So that is how her life ended. Ironically her husband is 97 years old and I figured dad would pass before mom did. But she passed away first. Of course there is a grieving process. But also there was a huge amount of relief we got as we had this huge burden taken away.
She also had survivor benefits from both dad and my pension plans. I didn’t even realize I had done that with my pension and was shocked to find our pensions actually going up. So ironically we have way more cash flow now that she is gone, than we had before. Way fewer bills and dad is an old guy with some health issues, but he’s a real sweetheart compared to mom, because her needs were just so much greater. He’s far more independent but I still watch and take care of him. I’m sorry if this post has a lot of negative details, but these things do happen and we never know when we will pass. Mom always witnessed when she could but was tremendously limited in what she could do and we were kind of lonely like living on Mars or something for the past 20 years. As fewer and fewer people could visit or stand our house and things become worse and worse and more and more like a nursing home. So that’s the end of her life, but the beginning of her joining others who passed before her. She was finally cured, but not the way we had hoped. She left but left in a different way and doesn’t’ have to suffer anymore. Ironically we did not plan for her funeral and she was never big on that stuff. I heard some of the wishes she had for her funeral mostly to have one like her mother so her relatives could meet.
She hadn’t mentioned this to others, so they didn’t expect one. It was thrown together abruptly and at the last minute by me. I heard what the others thought, but had to go with her wishes as she seemed to express them so we had a funeral and I gave a sermon teaching of sorts for about 20 minutes. Things didn’t go as smooth as they might have with better planning but I expected her to go home and recover not go home to heaven. In spite of her disease she wanted to witness to others and wanted the to miss bad things after they die.
She said to me I don’t want people to go to hell because I walk in it every day. That was her attitude and in the end that is the important thing, how you deal with the problems you face and how you treat others. So this is the end of her story. But ironically there are signs of EM in our family. we haven’t been genetically tested but some have experienced EM like issues and it could be NAV 1.7 defect related. Mom had the EM triggered by Risperdal which permanently put her in a horrible condition of EM. She also had a reaction to Amitriptyline, and the two may act the same way on certain 5HT receptors. If that was the cause, then those affected negatively by Amitriptyline, should avoid Risperdal at all costs.
I don’t know if anyone in the entire planet can say they got EM from this drug however. I never met or read of anyone getting EM from that drug. Although thermal regulation issues can happen as a rare side effect per their side effect warnings. So this is what we know. What we’ve posted. We may have eventually got her tested for the genetic version. My sister may be the 33rd person in the world to have burning ear syndrome and takes a heart arrhythmic drug that seems to have helped her with her burning ear and scalp issues. Mexiletine is a heart rhythm medication that helps some with the NAV 1.7 sodium channel defect so that is a clue that this could be genetic. Additionally another person in their genetic line has a burning leg issue of neuropathy symptoms but that was a result of a spinal injury, so that may not be any kind of proof. EM is a mysterious disease and rare to treat and can be caused by so many things. Mom tried a number of different pain medications and I’ve posted about them elsewhere. In the end EM didn’t kill her but it certainly affected the quality of life for three people and stopped us from being able to have a normal life. So the “new normal” of Covid shut downs was not a big deal for us, we almost had a 20 year EM shutdown from the world, keeping us close to the house. These kinds of things happen of course with rare diseases. Thanks for reading my various posts through the years, and I won’t have a lot to add from a caregiver perspective as mom has moved on.