Kidneys and Lungs and Heart, Oh My!

Well, after a soft launch of 1 Day 1 Week this past Monday (August 30) to a network of friends, some future topics that were requested included: Denial vs. Dealing, Handling the Unknowns, Self-Care, and Caregiver & Patient Conflicting Beliefs / Wishes. Those are among countless topics to write about as standalone blog posts and/or be interwoven into my overall blogging journey!

For today, I’m going to focus on Kidneys and Lungs and Heart, Oh My! Did you catch the play on words from the Wizard of Oz? Whether you did or didn’t, it’s from the book/movie’s famous line “Lions and Tigers and Bears, Oh My!” that Dorothy said as she, the Tin Man and Scarecrow entered the dark, creepy forest. The correlation to being a new caregiver/patient advocate and my mom’s life-threatening situation? It is about a journey in a strange land, that is difficult and fraught with obstacles, making new friends along the way, facing some scary situations, killing the Wicked Witch, and discovering that you had the power within all along. Some of these analogies may immediately seem obvious and others not, so put on your ruby red slippers (or, old-school Chuck’s or Air Jordan’s), and don’t forget an oil can and pail of water…and follow the yellow brick road to…

…the proverbial “to be continued” – at the end of my Beginning of the Journey post on August 29. I left you with a very hopeful statement, “Late in the evening of June 1, 2018, my mom arrived by ambulance at Cleveland Clinic in Weston, Florida, and from that point on there was a sense she was at the right place to save her life!” That was indeed a “good” feeling, though we didn’t know what color the road would be or what was really going on with her. In fact, for the first time during my mom’s precipitous health crash over the previous month and up to that very moment on the morning of June 2, we heard that my mom’s life was is grave danger. While we intuitively knew things were heading in the wrong direction and could conceptually understand her life was in the balance, it hit very different when such well-respected doctors verbalized this to us!

This is where the Wizard of Oz correlation begins…” a journey in a strange land, that is difficult and fraught with obstacles.” We had no idea what that land was going to look like and what obstacles were going to be in the way along the path to her life being saved – not to mention (although I will in future posts) what life’s journey would look like after they figured out what was causing her organs to shut down. Kidneys and Lungs and Heart, Oh My!

The initial steps into this strange land were scary on many levels and needed to be done concurrently to save my mom’s life. It started with her immediately being put on dialysis. Her kidneys were failing, rapidly. She had an astounding amount of fluid that had built up inside of her entire body; her weight had ballooned to 195 lbs. from 140 lbs. Also, her ability to breathe was decreasing quickly. My mom needed much more treatment than the oxygen she had been prescribed by doctors before Cleveland Clinic Florida, so she was additionally put on multiple rounds of respiratory therapy each day. Heck, it’s a wonder she could breathe at all considering only 10% of ONE lung was clear! As for the heart, they needed to take a close look at that because of the kidney and lung issues, along with her blood pressure being out of control (putting it mildly) – the doctors weren’t going to leave a single brick unexamined on the road to a diagnosis.

Everything was happening so fast, yet so slow. There was constant movement with teams of doctors, nurses, patient care techs, respiratory care techs, imaging techs, transporters, housekeeping, and so many other personnel coming in and out of the room. Yet, it seemed like an eternity, as with each test and lab result there was no diagnosis – meaning there couldn’t be an overall plan of treatment to save her life beyond the hospital. Fortunately, just as Dorothy, Tin Man and Scarecrow met the Lion and they all became friends … we became new friends with the healthcare staff that were caring for my mom. In my heart, I believe that these wonderful people were (are) not only excellent practitioners that would get to the bottom of my mom’s situation, but their kindness and compassion helped ease some of the anxiety for my mom (and my family) during what was the first incredibly scary experience. Quite a number of these people remain in our lives today, considering the 17 hospitalizations (100+ days!) over the following 22 months from June 2018 through April 2020, and countless clinic appointments, tests, etc. (Below this post, I have noted a few of the incredible physicians that saved her life, remain key parts of her journey, and would recommend to anyone! To all of the other healthcare staff that were key to saving her life in June 2018, I’m not including your names for privacy reasons because you are not public on the Cleveland Clinic Florida website…but please know we believe you were an essential part of saving her life, too!)

Okay, I’ve shared the Oz interpretation aspects related to “a journey in a strange land, that is difficult and fraught with obstacles”, “making new friends along the way” and “facing some scary situations” – and you may ask, “Todd, what the heck do you mean by killing the Wicked Witch, and discovering that you had the power within all along?” Well, let me bring you along the rest of that initial stay at Cleveland Clinic Florida hospital.

Over the course of the first 10 days in the hospital, in addition to daily lab work, dialysis and respiratory therapy, continual tests were administered (including bone marrow biopsy, kidney biopsy, pulmonary function, echocardiogram, x-rays, etc.) and with each result the doctors couldn’t figure out the underlying condition…but they continued with a diligent process of elimination. Then, “Eureka!” – they figured it out on the 10^th day! Based on the most recent tests in combination with everything she had going on, my mom was diagnosed with a disease called Scleroderma …and in her case, specifically Systemic Sclerosis – a rare, chronic autoimmune rheumatic disorder characterized by degenerative changes and scarring in the skin, joints, and internal organs and by blood vessel abnormalities. As part of this diagnosis, they better understood what issues were present such as kidney disease, interstitial lung disease, and others brought on by Systemic Sclerosis/Scleroderma. Now, the specialized Scleroderma team of doctors at Cleveland Clinic Florida (who had already been involved due to her health issues) could begin to precisely determine a course of treatment. Although many treatment aspects were critical, one included a miracle drug called Captopril that is indicated for patients with Scleroderma renal crisis. Without this drug, she (and others with this diagnosis) would not have a chance to live very long before the kidneys completely failed. Starting at that point, my mom has been very fortunate to have access to this drug at a relatively affordable cost because of her health insurance. This is a key aspect that has kept her alive to this day. That said, there have been and will be many other issues for her to overcome along her journey!

For now, I’ll bring the Wizard of Oz interpretations to a close. Regarding “killing the Wicked Witch”, the witch is a metaphor for Systemic Sclerosis – although there’s no cure and there have continually been lots of scary situations, overall my mom has been constantly “killing” it. This leads me to the final interpretation of “discovering that you had the power within all along.” My mom never thought she had the strength or courage to handle serious disease, but she has demonstrated both (and much more) in her 3+ year battle with this insidious disease. She has had the power within all along!

~ More to come in future blog posts about my mom’s journey

and of course caregiving/patient advocacy ~

Caregiver/Advocate Takeaways

• As a caregiver/patient advocate in an acute (or any) situation, constantly make lists of questions to ask the doctors. Don’t assume you’ll remember. It’s tough enough when not dealing with a stressful situation.
• If you don’t catch a doctor when they visit the room – you may not have an opportunity until rounds the next day. Doctors typically make rounds in the morning, often very early. Ask when they anticipate being there the next day…and arrive an hour earlier.
• With Covid protocol sometimes prohibiting visitors/advocates from being in the room:
  • Ask a nurse, preferably the charge nurse on the floor, what is the best way to communicate with the doctor(s) considering Covid protocols. If you need more than provided, kindly and respectfully push for what you need.
• Whether or not assigned to the room of the person you’re caregiving/advocating for, nurses are typically very compassionate and helpful in getting questions funneled to doctors for potentially more prompt responses. Keep in mind: nurses and doctors are human and dealing with many patients, so it may take persistent patience when trying to connect with them.
• Remember: if you are the patient’s healthcare surrogate either by nature of your relationship or through legal documentation, you have a right to receive information about the patient. As in a previous post, I recommend reviewing the American Hospital Association’s Patient’s Bill of Rights.
• In acute situations, or any time, try to breathe, remain calm and be positive – the patient has a better chance to feed well off that than from frenetic and/or negative energy!

Three key Cleveland Clinic physicians alluded to in this post

• Dr. John Donohue (rheumatology)
• Dr. Rute Paixao (nephrology)
• Dr. Jinesh Mehta (pulmonology)
• There are so many wonderful physicians, nurses, and other healthcare personnel at Cleveland Clinic Florida – in the clinic and the hospital – that have played an important part in my mom’s Scleroderma journey and my journey as caregiver/patient advocate. For privacy purposes, only physicians who have a profile on a Cleveland Clinic or other public website will be noted in future posts – though we’re grateful to all personnel that have been kind, compassionate and excellent at their profession!