I've always dreaded writing this particular post. I've read so many of my dear friends post on this site where they shared the news of the passing of their loved one. I've cried along with you each and every time. Today I took my precious bride of 35 years to the hospital emergency room because I thought her UTI was getting out of hand and that our local hospice organization wasn't doing enough. Only to find out after we get here that her UTI was showing improvements, but they discovered she had aspiration pneumonia. Her right lung is 2/3 infected. The hospice nurses never detected this and even her pulmonary doctor at the hospital said it was hard to detect. Over our 4th of July weekend, her oxygen level was around 89, her heart rate was soaring to 115, and her temp would go back and forth from normal to 102.5. I really thought I was losing her this past Saturday night. I called in our family and several close friends and they had a chance to see her one more time, although she was totally out of it. Sunday, I was determined it was just a bad UTI, so I had the hospice nurse get another antibiotic prescribed after I showed her the results of the UA that I took (I bought my own UA test strips a few months ago ... 80 for about $80 US ... And worth every dollar). But after 2 days of antibiotics, she only seemed to be getting worse. So I got her into our car by practically dragging her out of our home and then I drove like a race car driver to get her to the hospital, going 45 miles over the speed limit. Fortunately everyone saw my emergency blinkers and would get out of my way. And fortunately the ER wasn't too busy and they took us right away and put her in the "crash room". They had me explain what PSP is (not a sole ever heard of it and there were 3 doctors and about 5 nurses in the room), they started her on oxygen and put in an IV. They took a urine sample and also did a chest X-ray. Once they confirmed she still had the UTI, they started her on an IV of levoquin. And after seeing the infection in her lungs, they started her on Clindamyacin. After about 3 hours in the ER, they moved her up to a private room in the hospital. I plan to stay by her side 24x7. I've constantly had to be there for her, applying suction, catheterizing and changing her Depend, providing her some nourishment with my own supply of Jevity (we have to wait until tomorrow for their speech therapist and nutrionist to show up and order the PEG feeding). Apparently they are extra busy on the floor today, due to our 4th of July holiday. I guess there was a lot of pent up demand for hospital care.
Her pulmonary Doctor stressed that we are near the end, so even if she recovers from this bout of pneumonia, more will definitely follow, even though she's not taking anything by mouth (food or water). And the subsequent ones will be even harder on her and he doubts she will survive. Her blood pressure was extremely low (84/60), so they've been giving her IV fluids to try to increase it, and it has. Right now, it's 105/70.
It's been a long battle, over 7 years. We've fought the good fight. Tried multiple things to find a cure for her and mankind. She was a part of the Davuentide clinical trial in 2012. We did Stem Cell Therapy in 2014. We tried Salsalate in 2015. We tried to enroll in the C2N trial this past December, but was told she was too far progressed with PSP to be a viable candidate. And I've tried various herbal and vitamin supplements that I had researched and read where there they could possibly provide relief or even cure her. And most importantly, I've prayed. I've prayed hard that the Good Lord would cure her and give us more time together. I'm a fairly strong Christian, but my faith has definitely been put to the test these past few years and especially these past few days. And I know that test is only going to get harder in the coming hours/days.
Please keep Kim and our family in your prayers. I continue to pray for a miracle.
I love you all and I pray for each of you who are battling this disease.