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.
Ketchupman
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ketchupman
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Thank you for taking the time to write at what must be the hardest of times. Kim will find peace and you will know that you could not have done anything more to help her and all the other victims of PSP.
Oh Ketchupman, I'm so sorry you are both going through what I know we will all go through. I totally understand the way your faith has been tested. I know God is with us in this but I do do shout and cry out to him a lot these days.
I pray that He will make the final journey for your darling wife pain free and that you will know that special peace that only He can give.
I'm thinking of you and Kim and everyone else on this journey, it's such a hard, painful time. I wish you strength to cope during this agonising time and send you both my love and prayers.....
Love and thoughts with you and Kim. She's very lucky to have such a loving and caring husband and I'm sure your constant presence and support offers Kim so much comfort. Thoughts and prayers are with you xx
Dear Ketchupman, as others have said, your Kim was very lucky to have found such a loving husband, so fierce in the fight for her life. No one could have done better, and many of us can't come close to doing so much. You've are an inspiration to us all, and your big heart and sound advice have been a constant support for the community. While hoping for the miracle, I will also wish for you in this terrible time the comfort of your loving family and of your many friends, among whom I beg to be included. Hugs, love and peace, ec
Easterncedar expressed my feelings to a tea. Kim has been blessed to have you as her advocate. My prayers are with you and Kim. I wish I could do more for you ...With you in spirit, Christine
May I add, dear Ketchupman, that Kim must be a wonderful person, too, to have inspired such devotion. You both were lucky to have found one another. Love, Ec
Thanks for all the kind words. I have been truly blessed to have such a loving wife and wonderful mother to my children. I know if the roles were reversed, she'd be doing the same thing for me. Even though I'm imperfect and a sinner, I feel that caring for my wife allows me to be just a tiny bit more like Jesus.
Ketchupman
Ps. It was a rough night and she's definitely not out of the woods, but she's still by my side and fighting this round like a champ.
Still with us and fighting. And me too. I'm pretty disappointed with this hospital. I think because they know she is covered under hospice and because I'm here, they don't have to do nothing. Been exactly 24 hours and still haven't seen a hospice nurse and no pain meds, just Tylenol and antibiotics. But Kim has been so out of it, I just pray she's not in any pain.
Km, I can barely type for crying. What can I say. You have tried SOOO hard, it's put me to shame. You HAVE fought a good fightand by golly are still fighting it. Why is it we are not only our loved ones greatest advocate; but when you know you can depend on these people (the medical team) bam , they let you down so hard. It does not suprise me that they've never heard of PSP, but not to be able to distinguish pneumonia from a clear lung?...And then not to feed a patient who has been admitted to their hospital? I get it they don't have all the fancy paperwork, but it seems like they could override that paperwork for the health and welfare of the patient.....And when I went to the hospital they knew all the drs, and tests I had just had in the last few days.....I was rather taken aback by everyone having this info....but now I can see how it would be a good thing in the case of your wife...Too, I am sorry you had to do everything the nurses were supposed to. But who could do it better than you anyway....
All that aside, Let me encourage you that in these next few days to not give up hope that her earthly body will be strengthened. And let me encourage you as well that when it is time to go, if she has loved the Lord, that she is leaving this world only for greater glory! When it's time to let her go, do not be afraid. (My last sentence is filled with hypocritical disdain as I am not sure I will have that celebratory attitude if and when B dies before me...so forgive me km)
Well darlin, let me leave you with a prayer:
Lord , You have given us much, and we thank You, In times of trouble You tell us "lean on Me" , yet we seem to run away...our faith falters..but You do not, Lord. You are still there Lord....Help Dan to still be there Lord. Give him the spiritual, mental and physical strength that he needs as he tries so hard to hold up his lovely wife one more day, one more day, one... more... day.... Comfort Dan and Kim in these trying days Lord...
Praying for you and Kim. Your email saddens me and just in reading all your past post, I know how hard you both have been fighting this battle. You are amazing...never giving up and never losing hope that some miracle will happen. Hang in there my friend and know that you are loved and supported by everyone that is on this site.
Ketchupman my heart goes out to you, makes me think of what is to come. I love your posts when you say your precious bride, you must love each other so much, there is so much love in your posts. Praying for you and sending you a big hug xxxxxxx
It is so hard to understand this disease unless you are directly impacted by it as a patient or caregiver. So grateful that I have all of you to vent with. I have learned so much from you Ketchupman. Never giving up. Hang in there.
Ketchup, so sorry to hear that you are going through a really tough time together. My thoughts are with you, stay strong whatever the outcome of this horrible situation.
My thoughts are with both of you and your nearest and dearest at this very difficult time. PSP is a horrible dark disease, but for a few fortunate sufferers there are sometimes a few nuggets to be found.In your wife's case she may have come to realise the depth and scope of your love were more all encompassing than she might ever have imagined or expected. x
So sorry to hear about Kim, hope things are a little better for you both now. I`m crying with you as it is something we will all have to face at some point.
Dear Ketchupman, so sorry that your wife is so ill right now hard times, keep your faith and know that our Lord hears your prayers, he stands beside you both.
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End of life concerns 
End of life
When will this end my dear lord?
PSP brother's life ended with morphine without consulting him
