Renewed perspective: When the doctor becomes the patient

When we think of the patient experience, we typically place a good deal of importance on educating the patient on the clinical, often complicated, aspects of their diagnosis. We go to great lengths to explain what their condition is, what’s happening in their body and what the treatment will entail. But what happens when the patient has a wealth of medical knowledge already? When they’re used to being on the other side of the stethoscope. For one Parkview physician, Mark O’Shaughnessy, MD, FACC, Parkview Heart Institute, that turnabout became an unsettling reality. 

After a routine HeartSmart CT scan revealed some suspicious lung nodules, the well-respected cardiologist suddenly found himself in pursuit of an elusive diagnosis. He hit a few bumps along the way – including an excruciating kidney stone – but eventually landed on a diagnosis, a tentative treatment plan, new appreciation for the Parkview staff and a fresh outlook on the patient experience altogether.

Dr. O’Shaugnessy began keeping a journal of his medical journey, in addition to a separate Praise and Blessings Journal with his wife, Laura, where they would reflect on the gifts they received as a result of their experience. The physician graciously offered to share his personal entries, in an effort to highlight his trials and tribulations, the grace that can be found in the highs and the lows, and how his period as the patient changed his perspective forever. 

“These excerpts sum up the angst I felt/feel,” Dr. O’Shaughnessy said. “While I have a name to this condition and believe it is likely benign, my daily worries never go away. The grace we feel now and felt throughout the process by individuals who helped care for us and continue to pray for us is truly humbling and healing. Helping others helps as well, through my work with Fort Wayne Fire/Public Safety has been a God-send, along with my patients. It’s important for me to let the ‘system’ know that we are amazing and true healers in my book. This is not a small thing. Our culture starts at the top and permeates throughout.”

 

 

2/14/18

Praise and Blessings Journal
“Praise for heart scan and cholesterol screening – thankful for early diagnosis of lung nodules. Blessed by Mark being in the medical field, having knowledge and access to the system.” – Laura

 

3/4/18

Praise and Blessings Journal
“We are blessed to have each other; our strengths, faith and commitment to each other. Loving patients being there for us, not even knowing the comforting words of affirmation they are saying. One patient said, ‘You are my guardian angel,’ thanking Mark for giving her more time with her family.” – Laura 

 

3/6/18

Praise and Blessings Journal
“Very supportive office. Roy [Robertson]’s friendship and support will always be remembered and Mark will always be grateful. The firefighters are a blessing, being able to give back to such a wonderful group. Blessed that God encouraged me to journal with thoughts, prayers and scripture. Looking back, I was gaining strength and wisdom to trust God and do good.” – Laura

 

3/7/18

Mark’s Medical Journal
The adventure began innocently enough on Valentine's Day. Wouldn't it be fun for us to go as a couple to get our heart scans and cholesterol checks? Even though I had a positive coronary calcium score, 12, and was initially pissed, I was able to find some silver lining and have chosen to use this to my advantage when I speak with the fire department to convince ones with positive scores to begin therapy. This is where I thought it ended. Positive heart scan, begin Lipitor®, bing, bang, boom. Then I came home late one evening, not in a great mood because of the hectic day, and Laura tells me I need to go look at my scan. Something’s not right on the chest portion.

Convinced I would only find the usual non specific nodule, I dutifully raced back to my office and find this is not the case. I have multiple ground glass ill-defined nodules bilaterally. Well this isn’t good! So ends my sleep for the next several weeks. What could it be? Knowledge is a blessing and a curse. I can't help but go dark.

I confide in Roy Robertson, a great friend and outstanding physician. who orders the CT scans I want. I’d never experienced the IV contrast before. It does warm one from head to toe. Unfortunately the CT's document multiple pulmonary nodules and virtually nothing else except an incidental renal stone. Labs? All stone cold normal. Symptoms? Hate to disappoint, but none. Now that I see the nodules on the CT, maybe I am short of breath when I run. But no, not really. I had an awesome run this weekend. Weight loss? Not an ounce. The only symptom is sleeplessness and this is just my anxiety. I ask Srinivasan Devanathan to look at the scan for his expert pulmonary opinion and he told me he will and will get back this weekend.

He calls me back within the hour and tells me I shouldn’t wait for a repeat scan in 3 months as recommended by radiology,but proceed with an evaluation immediately. He has already called Eric Peterson who will arrange it for Friday. My PET scan is Monday with my visit to the Cancer Center on Tuesday. PET lights up like a Christmas tree with the lung nodules throughout and lesions in my clavicle and left pelvis. Well blow me down. Have to get some tissue in order to make a diagnosis.

The waiting is killing me. I literally feel like I am crawling out of my skin. Of course, I have to keep up an appearance of calm. All the while I am screaming inside, “Help me! Get me off of this ride.” Next, it’s biopsy time. The MA told me she would try to arrange it and that Radiology would call me in a couple of days. Wait, I want to know now! I don't have any patience, so, I go from the Cancer Center to find a Radiologist. Guess who I find eating lunch with Eric Peterson? Mike Kinser. "Mike, can I talk to you confidentially?" I explain the story and tell him that I really need an answer. He calls me an hour later and I'm on for Friday afternoon.

They’re taking a piece of my Ileum/pelvic bone with a CT guided needle. That's going to be fun! I just hope they get enough tissue to make a diagnosis. "First, name the problem" - Rolly McGarth. I've got a lot of fight in me, I just need to know my foe. It is the unknown that is the most disconcerting. We are just beginning. Am I scared? Hell yes.

Praise and Blessings Journal
“Laura! That’s it, nothing more needs said. I am so blessed. Wouldn’t, couldn’t do this without my rock. Early identification! Had it not been for the heart scan who knows when we would have found this thing. Sleep. I slept most of the night last night. Only up once and for a short time. Yea sleep! Diversions. Being busy at work caring for others takes the focus and worry off myself.” – Mark

 

 

3/8/18

Mark’s Medical Journal
Still no news, but perhaps some clarity tomorrow, biopsy day. Not really looking forward to this. The plan is to aim for the Iliac lesion on the left where it lights up on PET. I must be honest, I do fear the pain. Not really sure what to expect. Right now, I just want the name of this adversary. It's almost impossible to fight an invisible and anonymous opponent. Like fighting a mythical creature that has no form or substance. We swing wild through the air but strike emptiness. One of my biggest fears is that we get no answers from this biopsy tomorrow and have to start over from square one.

 

3/9/18

Mark’s Medical Journal
Another 3 a.m. morning. I dreamt of procedures all night. I was doing them, or watching them, or having them performed on me. Don't need Jung to tell us what they represent. I am anxious! I want answers, but I am afraid of what the answers might be. I'm afraid of the pain of the procedure. I'm afraid I will embarrass myself because of the pain, or worse, as I come out of sedation. I'm afraid they won't get answers. Is this the right approach? I don't want to go through all of this to find out that it was normal or nonspecific. I really just want it to be over. I worry about work; how am I going to work around my schedule? I worry about Laura, the kids, friends.

Praise and Blessings Journal
“Supportive and caring colleagues offering me support. Roy and Pete offering concern, assistance and support. People asked me if I was angry at God, and my reply was that I am better positioned to deal with it then many because of my job; being able to navigate the complicated system is a blessing. Feeling God’s and all of our parents’ presence. I mean I literally feel their warm embrace. We are not alone! I think about end of life discussions with patients and know my work there is not done. Rae Harris-Davis, a Southside grad, was my nurse in prep for the procedure. Wonderful person who prayed prior to them taking me back. Amazing.” – Mark

“Just took you back. Staff could not be any nicer. Feeling powers surround you. Oh my gosh, another gratitude. Dr. Devanathan just called (you’re still back in surgery) to say that he was thinking of you at this very moment and he and his family are praying for you. He spoke of the support you have given him. Praise for the staff – Rae, Tiang, Brenda, Marissa, Julie, Rad tech and Dr. Jeff Birn.” – Laura

 

 

3/10/18

Praise and Blessings Journal
“Sleep! I got 11 hours and awoke with the confidence that no matter what happens, God is with us. While it’s a bit preliminary, (still don’t have a name) I’m thankful for this illness. It has allowed us to pause and witness God’s love in and around us daily. It was always there but we covered it up with the busy of our lives. Rae praying for us before procedure, Srinivason [Devanathan] calling out of the blue, this morning’s devotion. God speaks to us daily, we just have to be willing to listen.” – Mark

 

3/11/18

Praise and Blessings Journal
“I’m armed and mentally ready for Mark and I to handle anything that life puts in front of us. Praise for Mark asking in church for prayers of unknown health concerns. Beautiful walk to the other side of the lake and back. Able to share our love and fears totally. I love our walks.” – Laura

 

3/12/18

Praise and Blessings Journal
“Another God wink that came in an unexpected package – a kidney stone! Unbelievable pain for Mark. Praise for counting on one another. Being there for one another. Kindness in the ER staff. Pain relief! We found out the bone biopsy was benign! A huge joy was the nurse, Brittany. She shared with us that her daughter had genetic issues. She wanted to ask Mark questions. We listened to her concerns, Mark explained what is happening and our own experience with our daughter. We felt joy comforting her. Felt blessed to be present and an extension of your perfect love.” – Laura

“Praise for the LaGrange ER staff and pain meds – oh what a relief it is. Knowing the system and our friends at Parkview Heart Institute. I met a sweet nurse, Brittany, in prep who is more stressed in life than we are right now. Laura ministering to Brittany took our anxiety away. Satish Velagapudi, Amazing! He is all the clinical skills wrapped in one of the most compassionate souls I have ever met. The procedure went well and stone pain is gone. Not sure the emotional pain is completely gone. Laura is a bit stressed. Normal MRI last night. And, we have a name: Sarcoidosis and not ever sure if it is active. No baseline to compare but compared to the alternatives we are relieved. Who would have thought a kidney stone could be a blessing? Home now, alone so I can write and reflect on the last weeks. So many blessings packed into so little time. Must not slip back into our old ways once life gets back to normal. It is an opportunity to reprioritize!” – Mark

“It is official - our children all know of our journey since Valentine’s Day. I’ve dreaded telling them since we did not know with any certainty what was going to happen. I could never be more proud of them. All three reacted with love, concern, empathy and a strong sense of family.” – Laura

“Praise for a good night’s sleep! I can face a new day and begin the work on the problem when I’m well rested. Each of our children have God’s gift of love, compassion and empathy. Each of them, in their own way, are true healers. While their paths are diverse the end goal Is the same: love. Thankful for Laura’s laugh. Even when it comes at somewhat inappropriate times (Like when I’m trying to take tape off a sensitive area). The joy does lift my spirit. Being back at the lake sitting in the sunroom waiting for the sunrise knowing that God is with us always.” – Mark

 

 

3/16/18

Mark’s Medical Journal
Now that we have a name to our foe, I have a pseudo-plan of action.

Some of what I have learned …

1) Life is always better shared. Not a new philosophy but definitely reinforced this past month.

2) Look for God’s presence in my life daily. Open my heart to the possibility and welcome it with open arms.

4) Value my free time more and become more selective when agreeing to do extra-curricular activities.

5) Redefine health and fitness and create a more rounded regimen.

 

3/17/18

Mark’s Medical Journal
Slowly getting back to normal. Urinating is no longer excruciating. Initially it was like peeing fire and severe cramping in the right kidney. I have a constant back ache, which I assume must be the stent, which comes out tomorrow. I have convinced myself I’m going to do it myself! We shall see. I don’t want to use it as an excuse but I do want to choose activities that will leave a lasting legacy. When we are faced with our own mortality, real or imagined, we begin to critically dissect our life work and legacy and wonder if we have left the impact we could have.

Praise and Blessings Journal
“The last week is a whirlwind. The days, times, events, names are still a jumbled mess in my mind. To think the simple joys that I took for granted, but now I see a new joy with a renewed soul. My heart jumps and skips a beat when I hear Mark playing the guitar and singing. I give thanks to you, God, for your journeys, trials, tribulations and successes. Looking back, I never thought there would be such joy from pains and sorrows but we must trust your timing and trust you will do good.” – Laura

 

3/19/18

Mark’s Medical Journal
It’s amazing how quickly one slips into established behaviors. At work one day and I’m right back to old patterns. I worry about little aches and pains. I have multiple muscle cramps and wonder if this is somehow related to the sarcoidosis. I am basically committed to a conservative approach to this condition, no plans to begin treatment, assuming the CT shows no progression. Then I worry about inconsequential things. Is my tongue sensitively because of sarcoid. The muscle cramps, the bruise on my arm from the IV … is it too big? I’m almost lost.

Took the stent out yesterday. Went to the shower with Laura in the bedroom in case I passed out. So now I’m basically back to normal physically but I have changed morally and spiritually. I want the transformation that occurred last week to last.

Praise and Blessings Journal
“These past several weeks have confirmed that joy is a choice. We must pick joy over sorrow, anger and frustration throughout the day. Where the mind leads, the body will follow. I give ultimate praise to both of our parents. They were great examples. They always chose love, hope, faith and joy. May we be examples of finding and choosing joy through faith, hope and commitment.” – Laura

 

3/20/18

Praise and Blessings Journal
“Praise for sharing our experience with others, witnessing how amazing God has been in our lives these past several weeks, helps place this whole thing in perspective. Visiting our caregivers from last week to hand out thank you cards to express our gratitude, having the experience together to allow us to minister to others who are going through similar problems. We have a whole new ability to empathize.” – Mark

3/21/18

Mark’s Medical Journal
I can’t tell if my physical exhaustion is just let down from a month of worry, a week of real illness with the stone, statin-induced, a URI or something more. Perhaps the “sarcoid” is active or something a bit more. Presently, I don’t have the energy to worry. My run yesterday was a real struggle. Am I just out of shape or is it something more? The only way to tell is to just keep pressing onward. Dwelling on what could be doesn’t fix or solve anything. Put one foot in front of the other and see where we end up.

Praise and Blessings Journal
“I am so very tired. Tired beyond description, physically, emotionally, spiritually. I worry we missed something or that the sarcoid is more active than we felt. Then the devotions today – I don’t need to worry because God has this. Worry gets me nowhere. God is with us always. I’ve got work to do.” – Mark

“My heart hurts that I can’t take away your fear, or your physical, mental and spiritual exhaustion. You have tried to be all to all people. Feeling that you would be letting people down – and killing yourself in the process. Let me be the strong one for a while. As for lack of sleep, I’ve been training for this since the kids were born. You rest. As for the worrying, I’ve been training for that for years, too. The miracle is that I’m calm, because God has told me that He’s got this and I feel it in my very soul. Let me take away your worry for you. Emotionally, I’ve already had my meltdowns. They are not news to God. There is something lifted from my shoulders. When you are in a heap, confessing, ‘I have nothing left to give. I’m physically, mentally, and emotionally spent. I am broken and I can’t do it alone,’ you can feel the Holy Spirit inside and hear Him whisper. ‘You rest. I’ve got this.’ I find joy in knowing that when one of us is down, the other will carry them. Let me be there for you.” – Laura

“I have praises for this journal. Placing it on paper somehow sets it free. After my pity party yesterday, and despite a very busy day, I was reminded of God’s presence and love. Focusing on others helps me to stop worrying about myself. Brittany taught us that.” – Mark

 

 

3/22/18

Praise and Blessings Journal
“’Don’t forget to show hospitality to strangers. For some who have done this have entertained angels without realizing it.’ Hebrews 13:1-2

Think of all the angels we have entertained in the last month. The names blur but the memories of our interactions will never dull. Yes, I still have fear creep into my daily thoughts but I find incredible solace and comfort as I share our experience with others and I see God’s perfect love mirrored in their faces, reflecting directly back to us. I wouldn’t sign up for this to happen, but I wouldn’t give back a single minute.” – Mark

 

3/23/18

Mark’s Medical Journal
With all the acute “crises” at our backs, I am left to deal with the aftermath. While we still are not sure exactly what we will do as therapy, I personally prefer watchful waiting, assuming that we don’t uncover some other manifestation or progression of disease in the upcoming testing (eye exam, Pulmonary Function Test, 48h urine, repeat CT). Watchful waiting is much more challenging as doubt creeps into my thoughts often. Do I really have no symptoms? Has my running suffered because the sarcoid is indeed more than we thought? Is this really sarcoid? We simply must get back and work. Suppress the doubts, trust in God to work with us. I have so much to do before I go Home.

 

3/24/2018

Mark’s Medical Journal
First weekend call since the crisis began. Can I live in God’s peaceful love and grace in the midst of the chaos? This is my task. My goal. It is easy to rest in God’s presence when we are on vacation and not stressed but a whole lot more challenging when our backs are against the wall. Open myself to the wonder.

 

3/27/18

Mark’s Medical Journal
PFTs are supra-normal. One more hurdle successfully crossed. If the eye exam is OK and repeat CT shows no progression or perhaps regression, my plan is for no treatment. This is the best of all possibilities. I find myself using this “Illness” as an excuse to back away from things I really didn’t want to do. I need to continue to try to free myself of things that are not as important to me or don’t help ne accomplish my life goals.

 

3/28/18

Praise and Blessings Journal
“Not every day can be a mountain top experience. Being back, it takes a bit more work to squelch the chaos and look for God’s still, small voice. I praise and am thankful for the mundane. Daily life and routine without the extreme highs and lows has a lot to offer. There is a certain peace and security in the mundane. I wouldn’t trade our life for anything.” – Mark

 

4/2/18

Mark’s Medical Journal
It is interesting how I longed for a name to my nemesis and now that we have one I find myself avoiding its use. I always qualify my answer “it’s probably sarcoidosis”. I can’t’ even bring myself to say it in an unqualified manner. While most of the studies have been normal to date, I am consumed with anxiety that perhaps my new knee pain is related. What about the hip pain and the heart palps that I have had for years? Could they be related to the sarcoid? In a certain sense, it would have been easier to have a diagnosis of cancer, a curable one, in that we would have a clearly defined treatment plan and end game. The nebulous nature of this diagnosis serves to create more questions than answers. Now I have to turn this uncertainty into a positive with my interactions with my own patients.

 

 

4/3/18

Mark’s Medical Journal
As I settle into a new reality with a label hanging around my neck, I have some difficulty truly grasping this new normal. I have always been healthy. I was the marathon man. I was invincible. Father Time was chasing me, but I still was able to do things people half my age couldn’t imagine. Now I must face my own mortality, truly for the first time. I’m not planning on dying any time soon but the label in and of itself has had a profound effect on me. I am mortal. There will be a time that my life will end, and just that realization changes things. We spend the majority of our lives never really thinking about such topics. When it occurs to others we are able to place distance between them and us. When it hits home with our own illness, even a minor scare, it is much harder to shake. It causes us to pause, reprioritize our life, find which is important and hold onto that for all that we are worth.

 

4/4/18

Mark’s Medical Journal
I’ve got these nagging issues that continue to keep my thoughts and anxieties on this illness. My palpitations that have been present for years seem to have increased in frequency. Or, am I just more aware? Sarcoid can affect the heart. Now I think I need an ECHO and ECG. I somehow thought that once we had a name to this thing that all would be fine. Turns out that’s not the case. Sometimes having medical knowledge is a curse. I have too much info and I entertain all the possibilities. Turns out ignorance is bliss. How do I move forward? I guess time and focusing on others rather than myself can go a long way to bring back the inner calm.

 

4/5/18

Praise and Blessings Journal
“Helping others really is the salve that soothes the wound. Yesterday I committed to be the light in others. Visiting the hospice patients in their homes, praying for Brittany. It is amazing what this does. My personal worries, anxieties and self-pity melt away, replaced by God’s love mirrored in others who have real need. My woes are petty in comparison. Love is meant to be shared with everyone we meet. I am uniquely positioned to share this love because of my profession, but, I must look beyond the obvious to find ways to share this love.” – Mark

 

 

What is sarcoidosis?
Sarcoidosis is an immune response to exposure to some poorly defined toxin and the body’s attempt to wall off the toxin. It can be aggressive and cause injury to multiple organ systems or can be completely benign.  

 

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