Friday, February 23, 2018

When is it OK to punch a doctor in the face?

I was so terribly upset and crying my eyes out. I could hardly breathe and my body was quivering. And then the doctor said something that made me so angry. Somehow I did not blow up in the doctors face. I made a fist and then thanked him if you can believe it. Looking back now, I wish I had told him the truth of the matter. I often go over it in my mind and part of me wishes I told that doctor what I really thought of him. To this day, it makes me so angry. I never know when that anger will bubble up. Usually while I am walking alone.

I don't think I have ever really gotten into the details of that week in April, 2015. There a lots of details but I will give a brief summary so I can keep this short. I will never forget that horrible day.

John was at work one day when all the sudden something happened. I know from an analysis after-the-fact that he must have experienced fear to go along with the sudden pain in his head. And he had temporarily lost his eyesight for a short while. He certainly knew something was very wrong. After being rushed to the hospital, he was admitted into the Neurology ICU at Fairfax hospital where he started getting round the clock care.

At first, the doctors speculated that he had meningitis. But with John's history of Spina Bifida and Hydrocephalus, it seemed likely that he was having a problem with his shunt. He had experienced shunt failures in the past when he was a young boy. These failures led to near death situations. Thankfully his specialists back then knew exactly what to do. The fix was shunt revision surgery.

It seemed like John might be headed for another one of those corrective surgeries. But for some reason, that course of action was not pursued. Instead, John suffered immense pain in his head and was weak and not hungry. The staff at the hospital treated his pain with pain medicine. In fact, they over medicated him. No one thought to consult with John's neurologist who was familiar with his history. Despite my mother asking them to do so. Their answer to my mom was that John's doctor would not come to Fairfax Hospital. In hindsight, we should have documented this as one of the many failings of the hospital.

After more than a week in the hospital, most of the time in horrible pain, the doctors finally decided to perform shunt revision surgery. This surgery involves opening up the skull as well as the abdomen to insert a new shunt which is a long plastic tube that drains excess spinal fluid from the brain. Shunts are very common in people born with Spina Bifida and Hydrocephalus. Here is a photo of John's head after the surgery.



Remarkably, despite the doctors bumbling about all week trying to decide what to do, the surgery was seemingly a success. For the first time in a long time, John's headache was gone. And I can tell you that he was pretty darn relieved. His anxiety had gone way down and he was starting to picture himself going home.

However, that night, things took a huge turn for the worse. I spent the night with John in his hospital room. Unfortunately, I did not realize what was happening before me. John's condition was getting worse and worse. His headache was gone but something else was happening. His heart rate was elevated. It was higher than my heart rate gets when I run several miles and he was not moving and had not been out of the bed in days. And he had shortness of breath. And John's belly was swollen. I alerted the nursing staff but they said that the monitoring machine would alert them if there was a problem. So much for care. You would think a health care professional would be worried about elevated heart rate for hours and hours, shortness of breath, and distended belly.  But the machines....

So John spent that night in horrible pain, uncomfortable and scared. He would call out my name and say, "Water." I would drip a few drops of water into his mouth and tell him that I loved him. Hearing those words seemed to comfort him. He said, "I love you too." That is all I could do. His condition got worse and worse. I complained to the nurses but they seemed nonplussed.

In the morning, a nurse came in and said that he needed to be prepped for surgery. They were going to do exploratory surgery to see what it was that they had screwed up when they did the surgery earlier. I heard a doctor say that perhaps they had "nicked a bowel." As part of the surgery prep, the nurse told John that she had to insert a tube down his nose to drain the fluid that was accumulating in his stomach. When the nurse was about to put in the tube, she said, "This is going to be uncomfortable." John belted out, "Just do it!" He was tired of the hospital, tired of the nurses, fed up with being in so much pain.

As soon as the nurse inserted the tube, it started to drain a dark red and brown fluid into a collection chamber. The chamber was filling up rapidly and the nurse called for help. They needed more chambers quickly. Just then, John violently vomited more red and brown fluid. His eyes rolled back and he crashed. The nurse had to call for the emergency crash team. A team of doctors rolled in with special equipment. One young doctor was asking the nurse questions she did not have the answers for. But I had been with him all night. I told him how many bags of IV fluid he had consumed which is the main thing he seemed to want to know. I am not sure what they did but they stabilize him. But John was weary, uncomfortable and in pain. It was around this time that John started moaning, "I want to go home." It still haunts me to this day. "I want to go home. I want to go home!" It was plea for all the madness to end. The poking and prodding, the procedures, and of course, the pain.

After that, the rest of the family had arrived. They took John down to for emergency surgery. I remember my Mom telling him that the doctors were going to make him all better. Honestly, John's eyes seemed to show his disbelief. He knew things were bad. He did not seem to believe us. The anesthesiologist had quite the concerned look on her face as she had my Mom sign consent papers that mentioned that any surgery has risk involved, etc. I guess the hospital has to cover itself. They don't want to get sued I suppose.

They took John away on the gurney and we all filed out to the waiting room. We were all now in a familiar place. John had so many major surgeries in the past and he always came through and recovered like the trooper he was. As we were waiting, I decided I could go get everyone lunch. So I took off with everyone's order and drove to a sandwich shop in Vienna. On my way back from the sandwich shop, I texted my brother Erik to ask about drinks for the sandwiches or perhaps another question. He told me to just come back to the hospital. When I arrived, I could not find my family in the waiting room and then I saw one of the pastors from the church.  He looked me in the eye and told me the bad news. John had passed away.

I was shocked and so angry. They took me back into a room with the rest of my family. They were all there and had a head start on the realization that John was no longer with us. I cried and cried. I was so upset. Soon after, some hospital staff arranged to have us go back and see John. A woman explained that his hand might be warm but that he was indeed gone. We went back and there he was. He was covered in a sheet with a tube sticking out of his mouth and his hand on his chest. I grabbed his hand and it was ice cold. I wept uncontrollably and said, "It''s not right! It's just  not right." John was my pal. He always had been. And I was devastated by his passing. We all were.

And then enters the doctor. He was here to tell us what happened. He went through some lame explanation about how it all went down on the operating table. Ultimately it was a pulmonary embolism that killed John. But this is where the doctor made a big mistake. He said, "Well, he did not feel any pain when he died." That made me so angry. But I squashed the anger. It was an amazing feet of control really. How could he say that. John spent his last week on this earth in terrible pain. He last words were, "I want to go home!" He spent the entire night with an elevated heart rate and shortness of breath. He was dying right before me and it was at no time pleasant. How dare this doctor say that. My brother Erik saw my clenched fist and later told me he thought I was going to lose it. I didn't but sometimes I wish I did. For John. My pal. My buddy. My first friend. My inspiration. By brother. I love you John. I miss you and will never forget you.











Sunday, November 12, 2017

2017 TCS NYC Marathon Race Report

My quads and hamstrings are burning, yelling at my body to just plain cut it out. I am hungry but don't feel like eating anything. There are throngs of spectators shouting and clapping. The ring of cow bells can be heard from all around me. But the spectators don't really speak to me for some reason. Their screams seem to go around me rather than encourage me. It is almost as if they are not really there. I am hurting and my body is pleading with me to just stop already. Then, just as I pass mile 22, I see a giant screen ahead of me. And on that screen, I see the following picture.


I have to admit that I burst into tears. But the picture was the just the shot I needed. I got to look at it for at least 20 to 30 seconds. The picture must have been over ten feet tall on the huge screen. I cried and I talked to John. I was here because of him. I was suffering and in pain but as John said, "It will go away eventually." With 4 miles to go, I just wanted to walk. John helped me persevere and keep running. Granted, I was well off my pace as I was fading hard. But look at that picture. Look at the joy in his accomplishments. I will always cherish my memories of John and our life as brothers. I miss him every day. 

My New York Marathon debut was less than ideal. I had managed to raise nearly $4000 for Team Spina Bifida so my main goal was accomplished before the starting gun went off. But there were a few factors that lead me to have a race that could have been better. 

For starters, my nutrition plan was not planned out well enough. On the morning of the race as I stood in line for food at about 4:40AM in the hotel, I realized that my plan of getting a bagel sandwich was thwarted as they did not have any bagels. They had them yesterday and the day after, but not on race morning for some reason. I got a couple of croissants and a Red Bull. I thought that with those things in addition to the bananas and other things I had in my bag, I would have plenty of calories. In retrospect, I should have gotten the food I wanted the day before. 

After getting our food, we went back up to the hotel to put the finishing touches on morning preparations and then headed out for the 20 minute walk to the NYC Library where I was scheduled to pick up the 6AM bus. The logistics person for the NYC Marathon is a proper planner. There were corrals and police directing directing traffic for blocks and blocks leading up to the bus pickup corner. There were multiple volunteers and check points and so many buses double parked as far as the eye could see. Everything was well planned and well executed. Everything went off like clockwork. 

My buss trip was uneventful. The guy next to me did not seem to want to talk and simply looked at his phone the whole time. It took about an hour to get to Staten Island where we got off the bus and were herded through metal detectors and security screenings onto Fort Wadsworth. It was 7AM. My wave did not go off until 10:15. One important thing to note was that it was easily 10 degrees cooler on Staten Island and quite breezy. I was under dressed for sure. It was going to be a long cold wait before I got to actually run. 

Once I got through security, I took trip number 1 to the porta john. I took my time in there. It was nice and warm. I then made my way to the Blue Race Village. There were three different villages setup, each with it's own pre-race food, hot water, porta johns, etc. I hung out for a while on the curb with my arms wrapped around my knees as I shivered some. I had a few conversations with strangers and took a picture for a small group. There were loud speakers all around with the same informational messages playing on a loop. But the instructions were in 4 or 5 different languages. It was sort of funny to hear a person's voice speaking in another language until they got to the phrase "therapy dog" which I guess does not translate well into other languages. 

I decided to get closer to my actual start corral which was Wave 2, corral A. I hung out there for a bit before making at least 3 more trips to the porta john. I ate all the rest of my bananas and had more Red Bull. And I continued to shiver. I really felt sort of miserable just sitting around shivering. 

I have a space blanket underneath the shirt - it was not enough
At last it was time to start walking over to the Varrazano-Narrows bridge. There were several announcements made that there were no bathrooms on the bridge and to go before you left the start villages. I thought I had taken care of everything but wouldn't you know it, right before the gun went off on the bridge, I had to go again. There was nothing I could but hold it until I had a place to stop. 

When the gun went off, we all took off. I immediately got into the pace I wanted to run for the race. Looking back, starting off at pace after sitting around shivering for 3 hours was probably the worst way to start a race. Normally, it takes me about 3 miles to warm up before I can start hitting my paces. Going out cold like I did without properly fueling my body lead to my less than optimal performance. I started out great but after about mile 8, I could start to feel the slightest ache in my left quad just above the knee. And I still had to pee so bad. Somewhere between mile 9 and 10, I found a good stopping point and hit he porta john. It was like that scene in Austin Powers.


Despite stopping for so long to go, that mile was not terrible. I ran at 8:13 min mile for that one but then the next 3 were right on pace at 7:52, 7:46, and 7:52. Then I hit another bridge which slowed me to an 8:00 for that mile. And then I started to fade a bit. My legs were starting to hurt quit a bit and I was only on mile 15. Also, the chatter among racers had died down and it was strangely quite on the bridge from Brookland into Manhattan. All I could hear was the pitter-patter of feet on the pavement. I was not the only one starting to struggle. 

Melissa had planned to be at around mile 16 so I kept focused on that. When I did get into Manhattan, I was greeting by a wall of sound. Despite a dreary, cool, and drizzly day, people in Manhattan had come out in droves to cheer. Somehow, I did see Melissa in the crowds as she cheered for me. I got a nice boost from that and tried to maintain my pace. 

By mile 19, the wheels really fell off. I was hurting and had slowed to a 9+ minute pace which was more than a minute off what I wanted to maintain. And it just got worse from there. Rather than describing each mile, you can see the great fade below. 

Splits TimeCumulative TimeMoving TimeDistanceElev GainElev LossAvg PaceAvg Moving PaceBest PaceAvg HRMax HRAvg Run CadenceMax Run CadenceAvg Stride LengthAvg Vertical RatioAvg Vertical OscillationAvg GCT BalanceAvg Ground Contact TimeCalories
18:01.58:01.57:551.0016108:017:557:281411541811911.117.28.049.0% L / 51.0% R25693
27:25.215:277:191.0001777:257:197:081371441731781.267.39.548.1% L / 51.9% R25879
37:50.523:177:501.0039307:507:507:201381481721861.197.79.447.9% L / 52.1% R25991
47:42.931:007:42.91.0020207:437:437:201421461711781.227.79.648.1% L / 51.9% R25989
57:51.638:527:471.0016237:527:477:071451501701771.217.99.748.1% L / 51.9% R25790
67:4646:387:411.0020397:467:417:171431541701781.227.99.748.2% L / 51.8% R25685
77:34.354:127:321.0013307:347:326:411481521701751.258.19.748.3% L / 51.7% R25287
87:47.31:01:597:451.002677:477:455:461491561711781.217.79.548.5% L / 51.5% R25692
97:55.91:09:557:521.0059367:567:527:221501561711901.197.79.448.5% L / 51.5% R26092
108:13.21:18:087:361.003498:137:367:101451531632201.228.19.748.2% L / 51.8% R25079
117:52.31:26:017:461.004977:527:467:351501551721801.197.99.548.2% L / 51.8% R25486
127:47.11:33:487:421.007497:477:426:231481551722231.277.99.748.4% L / 51.6% R25178
137:50.91:41:397:441.0026267:517:447:251501541731861.197.89.448.5% L / 51.5% R25380
148:02.51:49:418:001.0043398:038:007:171481531701861.177.99.448.7% L / 51.3% R25573
158:52.01:58:338:461.006208:528:467:121451501711771.068.78.948.9% L / 51.1% R26763
168:29.32:07:028:261.0075438:298:266:251471551721781.109.79.148.8% L / 51.2% R26166
178:29.92:15:328:271.0016698:308:276:021421481721781.118.59.448.9% L / 51.1% R25446
188:27.12:23:598:231.0023528:278:237:321431471721811.118.29.349.2% L / 50.8% R25751
199:18.02:33:179:131.00309:189:138:061371461711771.028.48.849.6% L / 50.4% R26839
209:58.12:43:159:501.0046109:589:509:041301361691770.968.68.349.7% L / 50.3% R27830
219:35.32:52:519:341.0033399:359:348:511291381711780.988.68.750.0% L / 50.0% R27332
229:17.53:02:089:131.003239:179:137:511381431691771.028.99.249.6% L / 50.4% R26750
2310:103:12:1810:001.003010:1010:008:041341451671740.958.88.649.9% L / 50.1% R27750
2411:063:23:2411:051.0095011:0611:059:161321431641760.899.48.449.4% L / 50.6% R28453
2511:033:34:2711:021.00436211:0311:029:021281401631790.909.08.249.9% L / 50.1% R27945
2611:143:45:4211:111.00333911:1411:119:081291411651780.879.18.349.8% L / 50.2% R28055
274:02.63:49:444:000.5013108:058:006:151421471691741.199.39.448.8% L / 51.2% R26438
Summary3:49:443:49:443:49:0926.50932879
At this point in the race, I just wanted it to be over. And that's when I saw John's picture on the screen. I still continued to fade but seeing his smile and knowing his history of perseverance helped me keep going even I was off the goal pace.

I saw Melissa one more time after coming out of Central Park before going back into Central Park for the final half mile or so. I continued running although it was more of a shuffle. I managed to pick up the pace a bit at the end as I ran across the finish line. I had managed to PR by more than 15 minutes which is a big accomplishment. But I had the potential to do much better. In the end, I represented John well and raised a good chunk of change for Team Spina Bifida. If I ever do another stand alone marathon, I will actually train for it as a marathoner should. My training was mostly for Triathlon and if I really wanted to do well, I would need to focus on running. Maybe someday.

As I sit and write this, I am still sore and still recovering. Running NYC was a fun experience and there is a lot about the race I enjoyed. But my execution could have been much better. I have leaned a great deal and know what it will take to improve.

Here are few pictures from the trip.
That might be a smile


Oh. The pain!


That is NOT a smile!


But that sure is!
Central Park the Day Before the Race
Times Square
Radio City Near our Hotel
Another Times Square Pic
Panoramic - Probably good one to open on your computer