Note: This post is a continuation from Parts 1-4 of the same title. I will try to make this post as stand alone as possible, but it will make more sense if you read the other posts first. This is a true story of a medical odyssey that serves as a reminder that mistakes are made and sometimes you need to be your own advocate and not blindly trust any doctor when it comes to your health and well being. Knowledge is power and a little skepticism could save your life.
After I was released from the hospital, I went home and felt better for the first few days. It was the week of Thanksgiving and I was happy to be home. The stabbing pain that I had been experiencing in my lower left-side rub area stayed away for the first few days. I was able to sleep laying flat again, which was a great joy. Over the course of the next few days, the pains began to gradually return, which was a concern, but the pains were not as bad as they had been so I was not ready to rush back to the hospital again, especially since I didn't feel like they really did anything to find the cause of the issue or resolve it.
Since the hospital released me on a Saturday, I had to wait until Monday morning to contact my gastroenterologist and my general practitioner, both of which the hospital wanted me to schedule follow-ups with. The gastroenterologist scheduled me for an appointment within two weeks as advised by the hospital.
Unfortunately, my luck getting an appointment with my general practitioner was not so good. I was told that because it was a holiday week, they were closed Thursday and Friday and could not get me in until Wednesday the following week. I was still not feeling well and felt like the situation was deteriorating. Sometimes the stabbing pains would come back suddenly. I was also very tired and the pain medication given to me by the hospital did not help much.
In the week and a half since I left the hospital, I began to experience some pain in my chest similar to the pain I had experienced back in late October when the urgent care misdiagnosed as "just GERD". This was diagnosed a few weeks later by the same urgent care (different doctor) as pleurisy (inflammation of the lining around the lungs). The pain took on a startling new dimension this time. Instead of being simply painful to breath, I was now getting very painful sharp stabbing pains in my chest with every breath I took. The deeper the breath, the worse the pain.
I contacted my general practitioner and practically begged them to take me in for an appointment sooner, but they told me that there was really nothing they could do for me. The shallow breathing and stabbing pains continued on and off over the next few days while I waited for my appointment. I was back to sleeping in a half sitting position propped up in bed by a mountain of pillows. Laying flat was impossible and I felt like I was gasping for air.
The smallest tasks, like taking laundry out of the dryer) left me exhausted. I was also having the severe and frequent diarrhea and suspected that the C, Difficile bacterial infection in my intestine had returned as it has a very high rate of re-infection. I washed my hands after using the bathroom so many times a day that the skin on my hands was raw and bleeding. Simply moving my finders would cause the skin on my knuckles to crack open and bleed.
By the time I was finally able to gt to the general practitioner for my appointment, I was in rough shape. As I walked into the building, I felt slightly dizzy, very sweaty, and nauseous. I fought it off with mind over matter, but by the time the nurse brought me into the office and started talking my blood pressure, I felt the urgent need to vomit. I desperately told the nurse I thought I was going to throw up. She stared at me like a derper and I repeated it a little sharply. She them took the lid off the bio-hazard trash bin and slid it over to me.
At the same time, I began to feel my stomach rubble and knew I was going to have diarrhea. I told her that I needed to use the bathroom and she led the way. I made it not a moment too soon and felt slightly better, but I was still very hot and calmy, even though I had no fever. I was also extremely tired and gasping for air to the point where I could not speak more than a few words without gasping, which caused more stabbing pain in my chest.
By the time I walked back to the exam room, the physician's assistant (PA) was there. I did not have an actual doctor anymore because my doctor since 2002 retired back in October without even bothering to tell me. She had merged her practice with a new group and when she retired, I was shuffled off to a PA, who looked at me blankly the first time I walked in and asked me if I was a new patient because she did not have any of my medical records!
The PA gave me a very brief examination as I sat on her table gasping for air complaining of being very hot and having chest pains.
She began asking peppering me with questions about my hospital visit even though I cannot hear well (being legally deaf) and ignoring the fact that I was ill and in pain which made it very hard to focus. She apparently did not have the report from the hospital and said she would send me for a blood test and a CT-Scan to check for a pulmonary embolism. I told her I had had about 3 CT-Scans and a few x-rays in the last 3-4 weeks and I'm sure if I had that it would have shown up. I was concerned about the amount of radiation exposure in such a short time and wanted to avoid more.
I then continued to complain about being hot, having stabbing pains in my chest, and not being able to breath. She asked me if I wanted to go to a hospital at that point. I asked her if a hospital could do anything for me and she said there was nothing that could be done for me and that I should pain the pain killers the hospital gave me (or Ibuprofen or Tylenol if I had to drive) and/or put a hot or cold pack on my chest.
Since she told me a hospital could not do anything for me, I declined. She then had an EKG done on me by her assistant. Immediately after the EKG, I knew I needed to get to the bathroom again immediately so I told the technician and left the exam room. When I came back, no one was there and I sat gasping on the table for about 5-10 minutes before the PA returned.
She told me that all my vitals looked great. I was ready to cry because I was in horrible pain and was told basically nothing could help me. She then actually asked me if I was feeling okay because she didn't think I was "as chipper as usual". I wanted to slap her upside the head at that point for asking such a stupid question. How chipper could a person possibly be expected to be while in severe and constant pain and not being able to breath?
She asked how far away I lived and if I was able to drive. I mumbled some answer and then left. She asked me to call when I got home, but even as I said I would, I knew I would not bother. I did not feel like this office cared about anything except perhaps their own liability for allowing someone who was clearly very ill to leave and drive.
When I got home, I called my gastroenterogist and told them I was having stabbing pains in my chest and it was hard to breath. I also told them I was having bad diarrhea again and thought the C. Difficile may have returned since the hospital cut me off the antibiotic when they determined I didn't have it anymore. I could tell that the doctor was not happy that the hospital stopped the antibiotic treatment. He filled a prescription for double the dosage and told me I would need to stay on it for 6 weeks.
They also told me they could not do anything about my chest pains and breathing issues and that I should go to a hospital if needed, but that these pains are common with the Costocondritis (inflammation of tissue and cartilage in the chest and rib area) that the hospital diagnosed me with. Since their assessment seemed to agree with what the PA had told me, I tried not to worry. I took a Tylenol and put a hot pack on my chest. I was still gasping for air and exhausted even though the stabbing pains intermittently receded).
Over the course of the next 4 days, I felt better at first and even went out to dinner at a restaurant to celebrate my mother's birthday. The next day I woke up and the breathing and chest pains worsened. I was home alone as my boyfriend was working a double shift. The situation worsened as the day wore on. By bedtime, I was in severe pain. Any movement caused such pain that I was literally screaming. In fact fact, it was so bad that I made my boyfriend sleep on the couch because he tosses and turns all night and I did not want to be jostled while he was doing his Shamoo impression in his sleep.
I thought I was going to die, but based on what the medical professionals told me, I did not want to be sitting in an ER overnight. To help me bear the pain through the night, I promised myself that if I lived until morning, I would go to the hospital. A different hospital this time. I barely slept as I would accidentally move and wake myself up by screaming in pain. It was literally like being stabbed in the chest.
In the morning, I could not bend over to put my own socks on because it hurt too much and felt like being crushed in addition to being stabbed and not being able to breath. My boyfriend helped me get dressed while I screamed in pain every time I moved or gasped too deeply for breath. I did not think I was going to make it and my parents and boyfriend suggested an ambulance, but I was concerned my insurance wouldn't pay and the hospital was not too far away so I thought we could probably get there around the same time.
My boyfriend dropped me off at the ER entrance and I staggered up to the front desk panting with my hair uncombed and gasping for air. I told the lady at the desk that I literally thought I was going to die right then. She quickly gave me form to sign and I was whisked off in a wheel chair and put on a gurney where they took my blood pressure and then took it again because they couldn't believe that it was 89/62 and thought their equipment malfunctioned.
At that point, I was given a ER room and put on IV fluid. A chest x-ray showed that I had enlargement around my heart. I was wheeled off for a CT-Scan and then a Echocardiogram before being admitted around 10 pm that night. I was hooked up to a wifi heart monitor and the doctor from the cardiology unit came in and told me I had fluid in the chest and lung area which was constricting my heart and lungs.
The doctor told me that the fluid had been there "for weeks" and had turned from clear liquid into a jelly like substance that they did not feel they could drain simply and that surgery may be necessary to cut a window and insert a tube to drain it. For the surgery, would need to be transferred to another hospital and then remain in the hospital about a week afterward and then another 1-2 weeks at home recovery (due to needing narcotic pain medications and rest). The good news was that after the surgery, I would be cured with no further treatment necessary for this condition.
I was both very frightened, and yet relieved. Having felt so bad for so long and being told nothing was really wrong and just take a pain pill by other doctors and hospitals was mentally very rough. I stayed in the hospital a full 7 days and because I was responding very well to an anti-inflammatory called Colchicine ( https://www.webmd.com/drugs/2/drug-8640/colchicine-oral/details ), the surgeon opted to not perform the surgery at this time.
I am now under the treatment of a cardiologist and she said the situation may take several months to completely resolve. If at any point the inflammation gets worse or stops responding, I will have to have the surgery (which sounds unpleasant). The situation is on going and I may write another post later to update.
The morale of this sage is that even medical professionals make mistakes and they make them much more often than anyone realizes. If only my condition had been properly diagnosed at the first hospital, it could have been resolved simply and without any complications by simply using a needle to draw out the fluid. Fortunately the first hospital did not bother doing further testing once they decided it was a case of costcondritis. Maybe the fact that the first hospital also completely misdiagnosed me as having Shingles should have been a warning as to their incompetence, but when you are feeling poorly, its often difficult to think clearly.
Ultimately what was misdiagnosed as "just GERD" and Costcondritis ended up being pericarditis (inflammation of the lining around the heat) and pleuritis (inflammation of the lining around the lungs) both with effusion (which means fluid build up) which constricts the heart and lungs. I also had a completely collapsed left lung.
If you know there is something wrong with your body, do not let any medical professional tell you that you are fine. I don't care what their machines say. Do not let them tell you to just take a pain pill when you experience an extreme change in your body. Keep pushing until they can find and explain the reason for the changes in your body. The root cause needs to be addressed. If that had been done in my case, instead of just pawning it off with some vague terminology and pain killers, perhaps this would have been turned out much better.
I feel grateful to the second hospital for actually finding the source of the issue and resolving it in the least invasive way. That's what good doctors do. Unfortunately, we are indeed living in a world of fast food health care. Many doctors are part of groups and are overbooked and overwhelmed. Things get missed. Sometimes important things that get people killed. I'm one of the lucky ones. If I had let this go another couple of week, the fluid would have continued hardening until it eventually turned into concrete like consistency. At that point your heart can't beat and you can't even be shocked back to life.
I hope my story helps someone else who is suffering with an unknown issue and being brushed off by their medical professionals. Or maybe a doctor will read this and try to understand how frustrating it is to be a patient who is experiencing an issue and doesn't feel like they are being helped. Thank you all for reading the series and God bless.