Aug 22, 2017 Latest post:
Feb 12, 2018
My story actually began over a year ago when I nearly died after an episode with Diabetes Insipidus, which caused a domino effect causing lithium toxicity, then kidney failure followed by complete delirium. That occurred December, 2015/January, 2016. Since then there's been a battle of waters raging within me ever since. The fluid retention started becoming an increasing problem last late summer..,I was slowly gaining more and more weight even though I was barely eating. As the water retention would increase especially in my stomach, I would sit down to eat; after 5-6 bites , I felt like I ate a 5 course meal! Through the holidays late 2016 and early 2017 the fluid retention was out of control. My nephrologist, primary care physician, and other specialists kept trying to change medications, increasing and decreasing doses, etc. to no prevail, the fluid retention continued throughout the spring and summer of 2017 - Lymphedema therapy has been attempted for the past 3 months, but no progress. In the meantime, I've been getting more short of breath, appetite the same (except my brother Steve's pancakes earlier this month!), and the weight kept fluctuating up and down-no remarkable changes except those already mentioned. My Palliative Care physician - Dr. Sonia Karimi referred me to a Cancer Rehab/Lymphedema Specialist-Dr. Nancy Hutchison. After reviewing all my medical history, examining me and chatting with me, she said: "Patricia...there are no other options for you-all efforts have been exhausted...to attempt further aggressive methods (to remove the water), would send you into immediately failure." "I will message Dr. Karimi now with my recommendations-that comfort care will be your best option." I said "you know, Dr. Hutchison-as long as I can remember I have had nightmares of me drowning...and that's exactly what is happening-I'm drowning on the inside."☹️ She took my hand and said "I'm so sorry...but if it's any consolation-you look so good for someone so ill...people don't realize how ill you are." I said I hear this a lot! LOL.
That very Thursday-one day later, Dr Karimi called and told me after speaking with Dr. Hutchison and my nephrologist Dr. Otteman, the only option left is comfort care and then advised Hospice admission. (I had been advised and prepared for this 2-3 months ago, but Medicare wouldn't fund at that time). I reluctantly agreed. By Friday I was meeting with the admissions nurse. She ordered a better/more effective mattress for my hospital bed...it was delivered yesterday!! Now, that same mattress my PCP had been working on for the last 6 months! Wow! The expediency of Hospice! You'll get to know more of my warped sense of humor; but I guess Medicare is glad to find things if the patient is dying! If my prognosis had been better, they'd still be fighting me and the drs. on this!!
I kept my spirits up extra high the next couple days-after all it was the weekend of my goddaughter's wedding!! Ashley and Kevin were married in a beautiful service; a fun reception followed. I attended their gift opening Sunday-another fun day! Then I was in tears last night as I'm really beginning to face reality. I've been told for the last year I wasn't going to make it very long, but I proved them wrong. I'm hoping I prove them wrong again by being the longest patient in Hospice for Diastolic Congestive Heart Failure! Live-Love-Laugh has been one of my mottos before all the signs and knick knacks came out with the motto. Faith-Family-Laughter are words and priorities I live by. I love my family and friends and the Lord with my whole heart! I'm fighting for as much time and events with them as possible. September I'm cohosting a baby shower for my niece Kassy Schroeder who is expecting a baby girl - Rory - in October! I'm looking forward to our first Halloween here - heard there's lots of trick or treaters in this neighborhood; and am looking forward to late fall/winter holidays and events. John and I will be celebrating our 26th anniversary in September and hope to make a trip up to Duluth early October. We're headed to Cloquet Labor Day weekend with Sarah where we'll spend a full day in Duluth that Saturday and Hoffman Oak Lake Campground that Sunday visiting Dave and Cindy Partch and Merri and Russ Penning. So you see, I have lots to do and I plan to do it all!! I'll update more later. Today I meet my Hospice Nurse and care team at 1 pm. Till I post again-as I always say to Libby "I love you to the moon and back" (been saying this, too, before all the bric a brac had been coming out with the saying everywhere!) Love and prayers - Patti 😍💞🙏🌹🌼🌺