LOOOONG story:
My husband went in for a Laparoscopic Nissen Fundoplication surgery. It was expected it would be 2-2.5 hours. I had my friend and her husband with me at the hospital because of my PTSD issues. Mike's parents also came and were a great support. At about 2 hours and 20 minutes after entering surgery, I got nervous. I knew it was just because I wanted him to be done and I had been too warm for too long. Nausea, dizziness, fatigue, vision, hearing, and feeling my extremities were all issues. I just wanted to see Mike and hear him.
After 3 hours they had finally finished. It went longer than expected. The surgeon met with us very quickly. "It was successful. Mike won't be able to drink or eat anything because they will do a scope the following morning to make sure everything looked okay." He showed a square of 4 in x 4 in saying it was a large hiatal hernia. I asked if all he used were stitches and he said Yes and then left in a hurry. When he left my friend said, "Well okay then!" and "He is young." The surgeon didn't spend much time, but he said the words I wanted to hear-it was successful.
We went up to the observation room he'd stay in for 24 hours and Mike was starting to come to. Everyone left and I figured all would be fine. However, shortly thereafter he threw up some blood. Then he screamed out in more pain than I've ever seen him in. More pain than he has ever felt. The nurse asked what he was feeling. He said, "Tearing. My lung feels like it's being torn open." He had incredible pain in his right lung. His blood pressure and heart rate were high (which is obviously to be expected. I knew that simply because of my own experiences), but the lung and chest pains weren't something I expected. The nurses were wonderful and I said it worried me. One nurse said, "Me too. I've never heard pain after surgery described like that." She told the doctor and he ordered an EKG and stat X-ray. They did an EKG and I watched it just like the others in the ER the few months before. Abnormal.
The surgeon came up and asked, "Michael, how do you feel?" He told him honestly, "I feel like my lung is being torn open." The surgeon said, "
What did you expect? You just got out of surgery." The cardiologist came up. He saw the EKG and said, "Hmm.." He looked at the monitors. Hmmm. The cardiologist then compared the previous EKGs from the ER visit a few months earlier to the current one and said, "Oh, okay." He told the surgeon that he would have been much more concerned-in fact that
he WAS concerned-because of the EKG and his stats. But since his other EKGs were the same (abnormal) and this one was the same (abnormal, but in the same way), that it should be okay. They would monitor him, though, because of his chest pain. I asked the doctors, "But, they said that his abnormal EKG was only because of his hiatal hernia. They thought it would get better after he had the surgery. Does that mean it is something else? His heart?" Our surgeon gave his second, "
He JUST got out of surgery. What did you expect?"He walked out and I looked to the nurses. I explained that I was sorry that they had to do another test, but that I had been concerned. We didn't know what to expect. Both nurses said they were too. "You were okay to ask and don't worry about him. He is....he is that way. Always. The hardest to read" (other nurses on later shifts said the same thing and about his communication 'style').
Mike had his X-ray and the surgeon came back to say everything was normal. No problems. AGAIN he told us that he just got out of surgery. The pain is just the trapped gas bubbles. Part of surgery. (Granted, we weren't told what to expect at all)!
We figured it was no big deal and my concern was unfounded. I shook it off and took my place of silence. I acknowledged that my extra concern was probably just my heightened stress of PTSD. I was being ridiculous. Settle down.
But Mike didn't get better. We thought we'd be able to leave within 24 hours as predicted for this type of surgery. He was still struggling breathing on his own. His heart hurt pretty bad- even worse than his stomach and incision sites. Whenever he was alert enough, he made sure to walk often. His heart rate, blood pressure, temperature, and other stats would fluctuate between high and normal, but not extremely high. On their own it raised no flags, but together he was not good enough to go home. I asked a few questions, but was put in my place.
I shared an extra part of our struggles with others via email or fb and
several voiced their thoughts that we should just "trust the doctor" and that none of it was a big deal. I know it was to calm me, but instead it rattled me. Granted, I was running on a lot of pain and very little sleep. I started having flashbacks of a couple really, really hard times in my past where I did trust doctors and shoved that inner voice down. By the 2nd or 3rd day, I became more and more concerned. Why was he still unable to breathe on his own? Why is he still so lethargic? Why was he still so pale? How is he getting just a little worse and worse? I didn't VOICE these, but I did wonder and asked a few questions leading to answer these. I am familiar with recovery from surgery and most of these are common. But there was this gnawing feeling that there is more and the surgeon's dismissive attitude and
lack of communicating ANYTHING at all was not something I should just sit back and watch.
I know most people have great experiences with doctors and surgeons. I am SO glad that is the case. But when my stress level was too high, sleep was low, pain was high, patience ran low, and PTSD was high, I started listening more to my gut than the doctor.
Let me tell you where TRUSTING DOCTORS got me:
- REMEMBER THAT TIME I STARTED TO DIE? --->A doctor put me on a prescription that interacted with another I'd been on for years. My pharmacist twice said he didn't want to give it to me and to ask the doctor about possible interactions. The doctor waved off my question and said everything was fine. Instead, month after month, he actually increased the dosage. I got to the point where I twitched on the floor, collapsed at work, became home-bound, and couldn't stand more than 2 minutes without passing out or vomiting. My intestines completely shut down. Bleeding over my kidney with bruises that looked like someone took a bat to my back. My doctor thought someone was abusing me. He didn't listen. I ended up in the hospital after 3 days of slurred speech, and then my eyes rolling back in my head and unable to stand. In time I came to and they brushed it off. The pharmacist's words that I'd forgotten about many months before kept running through my head. The day after the ER, I was crawling down the hall to take my meds and that warning I'd received came to me. I decided to NOT listen to my doctor. It took a few months, but I improved. LATER, when I got a new doctor and she saw how HIGH the dosage was on this new medication, she was appalled. Horrified, actually. Come to find out, I was experiencing SEROTONIN SYNDROME and was closer to death or coma than I'd realized. Granted, I felt like I was dying and had prayed for 3 days, "Heal me or Kill me," over and over to God. But, I hadn't realized WHY. My intestines have never been the same.
- REMEMBER THAT TIME I WAS IN LABOR FOR ALMOST 6 DAYS? --->The first time I went to my OBGYN appointment, I met with the nurse practitioner. I didn't have a good feeling and felt like I should get a different doctor. I was talked out of it, though, because I hadn't actually met the doctor. He was recommended by so many. Fast forward 8ish months, around my original due date (later they changed my due date, by a month, when they measured my baby in my ultrasound. But according to timing the due date was right on)......... My OBGYN thought I had a kidney stone, not that I was in labor. I mentioned that my mom only felt back labor and my sister only progressed with pitocin. What if I was the same? Why were they monitoring me on the front if my pain was in the back? The nurse came back to say, 'He says it's fine.' I went back to teach and still felt pretty bad. But, I can push through quite a bit. I called to say the kidney stone hadn't passed and pain increased. Doctor said, "Drink more fluids." Called the second day that the kidney stone still hadn't passed. "Drink more liquids." This had gone on since Wednesday night/ Thursday morning. It was now Saturday. I lost control of my bladder and was leaking. Kidney stones really do hurt and they seem to last for a long time. Sunday I had reached my limit. I hadn't slept since Thursday early morning. I called the OBGYN and still was told, it's just a kidney stone. I prayed for relief and felt that I should actually get a second opinion. I got in with an Urologist on Monday. He was shocked---Your OBGYN didn't do an ultrasound to see the kidney stone? No. You thought you lost control of your bladder? Yes. The urologist scheduled an ultra sound. There was NO inflammation. NO kidney stone. I hadn't lost control of my bladder, but had been leaking out amniotic fluid this whole time. I didn't need more liquids and Depends diapers. I needed the hospital. I had been in labor that whole time. We went to the hospital and I called the OBGYN AGAIN. Even though I'd called earlier that day, he was "in a meeting." His message via his nurse was, "I wasn't in labor, but if I wanted to, I was free to go to the hospital for them to tell me it was just a kidney stone." I got to the hospital and amniotic fluid was found. The doctor didn't believe them. "It could have been on the nurse's gloves from before." The nurses were flabbergasted. He demanded 3 tests. The OBGYN on call did the tests. I had almost NO amniotic fluid left except for 2 tiny pockets on one side. I was at risk. I was put on pitocin for THIRTY hours. Since my uterus was exhausted from working for so many days, I only progressed to a 5. I finally had a C-section and had my daughter Tuesday night. I was in labor for almost 6 days. All the nurses came in to see "that couple," and joked that I had the cutest 7 pound kidney stone they'd ever seen. I finished teaching that school year, and a day or two later, had a surgery to fix my issues from that horrible labor.
- REMEMBER THAT TIME I HAD A MINOR BRAIN SURGERY AND WOKE UP THINKING THEY WERE KILLING ME? THEN EVERYTHING BECAME 100000000xs WORSE?---> I was so hopeful about my Radio Frequency Lesioning for my Trigeminal Neuralgia. As I was discussing it with my neurologist, I had a quick feeling of "Oh no. Don't do it." But, I brushed it aside. NOTHING could be worse than TN. If medication had failed and this was the last ditch effort, let's do it. I CRIED because I was so happy that there was actually hope of relief. I had the surgery and everything got SO much worse. The issues I have now from waking up screaming and crying, begging them to stop, and the anesthesiologist unsuccessfully being able to put me under from that moment on remind me the issues I have from NOT being heard.
- REMEMBER HOW I HAD ANESTHESIA DOLOROSA AND INFECTIONS THROUGHOUT MY BODY LANDING ME IN THE HOSPITAL FOR 4 DAYS? --> Immediately after my surgery I got a cough and burning in my lips. Then stinging in my tongue. I emailed the neurosurgeon (my chart) and said my lips burned. I was told it should go away and to take Tylenol. The next day I emailed again that the Tylenol wasn't enough and what to do about the stabbing pain in my ear. I was told to take EXTRA strength Tylenol. And see my family practitioner about the ear. I called my fam doctor and couldn't see her for 2 weeks. Saw the Quick care doc and was put on a small round of steroids. Asked about what I do when I need another round, since I ALWAYS need extra rounds. Told to wait a week and then call. The next week I passed out twice, had a fever so bad I had to be covered in ice packs to stay conscious, and decided I would be happy to die. My husband and I both thought that I should go to the ER, but I reassured him I was fine. Two days later my fever was better and I went for my followup with the neurosurgeon. Almost 103 temp, sent down to the ER, and had pneumonia, UTI, sinus infection and possibly meningitis (but the cocky doc in training wouldn't listen to me and failed at getting the spinal tap all the way). I had anesthesia dolorosa, they could no longer help me with surgeries (I had 2 more set up), and was in the hospital for 4 days.
Needless to say, I've gotten to the point that if I have a question, concern, or thought, I've learned to speak up. I SHOULD speak up. But I questioned my thoughts because I'm a bit on the fragile side since my surgery. I knew that some of my own past experiences cast a shadow on my current experience. But, shouldn't I speak up and ask if we are being told NOTHING? Especially if I feel that the doctor/surgeon/nurse is being dismissive. I kept dismissing my gnawing feeling that they were missing something with my husband's recovery because of my own weird hospital issues. Eventually, though, I decided that I'd had enough silence.
Anyway, I started asking that they monitor him more. They were monitoring every 2 hours. But it was just a snapshot and I could tell when he started getting a little off. He didn't say anything or really look that different, but in that moment I wanted him monitored. This time I insisted that they check him and keep him monitored. That was when they realized that his blood pressure was all over and that cardiology actually shouldn't have given the all clear. They called the surgeon back and did another EKG. It was abnormal, just like all of his others. They checked everything and did another EKG longer, while keeping his bp, heart rate, and oxygen levels monitored. They realized what the issues were and finally were willing to discuss treating it. He was put on blood pressure medication and they finally recognized that his issues were bp + hiatal hernia. I had been VERY frustrated because right after his first EKG (waking up with surgery) they put him on bp medication. That was when his chest pain finally dissipated. But in time, the chest pain returned and then he got worse and worse. They didn't put him on the medication again and wouldn't discuss the idea that any heart issues were needed to monitor.
With his first response to the bp meds and the abnormal EKGs after surgery, I thought we figured out the last piece of the puzzle. They didn't think so and how dare I think that I could ask questions.
Couple that with my inability to walk easily, feel my feet for 6 days, hands for 2, vision and hearing messed up, so sick that I'm in the bathroom for half an hour, stabbing pains from Hades, sleep for only 1-2 hours for 2 days, nausea, dizziness, fatigue, and pain throughout my body....I reached my limit. I broke down feeling a weight of anxiety past my limit as too many reminders of my own experiences in the hospital crept up, the inability for my hubby to communicate with me much, and feeling so dang disabled. Thankfully there were so many intervening angels who saved the day. Many wrote messages of love and support on fb or text. My dear friends drove me back and forth so I could shower and get clothes. (Because every day they thought he'd improve and we could go home. But each day he wouldn't improve, they had no answers, and that was that.) Several stopped by to simply check in, give me food, give Mike a blessing, and help me through small bouts of PTSD.
Thursday night they wanted to move us to another floor. We were only supposed to be in observation for 24 hours. Instead we had been there for more than 3 days. Nurses who returned were shocked to still see us there. That evening there were no available beds. But in the morning they would move us because we were expected to be there until at least Saturday. Again, no one told us this until the nurses were changing shifts. Every piece of information we got about how Mike was doing or the treatment plan was through a nurse shift change and their report to each other.
It was that afternoon/evening that they put Mike on regular bp medication. Our dear friend also came to give an anointed blessing. About an hour later his stats had gotten just a bit worse (fever, oxygen) and I had some hesitations. But, once they had decided that he needed bp medication that nagging feeling inside that something was off had disappeared. I also knew he'd received a priesthood blessing that was positive. I no longer felt like I had to speak up about something. So, I went home to sleep. By the time I returned at 6:45 a.m. Mike was smiling. He was finally looking like himself. He was no longer pale, lethargic, or having chest pains. Everyone who saw him from then on commented on how much better he looked. Finally. 4 days.
Instead of moving us up to another floor, they decided he had improved so well that we could go home instead.
We asked a few questions of the surgeon.
He can return to work? 2 weeks
Wait, he can lift 50 pounds at work, always on his feet... TWO weeks.
Okay, okay, no more questions.
The nurses were more helpful and sent us home with paperwork that answered a few questions we had (which would have been great to have from day 1, since our surgeon didn't tell us anything). It recommended two weeks of liquid diet and his body seems to respond much better to this than solids. I still worry a lot about him going back to work in 2 weeks and lifting so much. But, apparently doctor knows best. =)
Mike is allergic to one pain medication and when I went to pick it up, the pharmacist voiced concern (flashback to my doctor who almost killed me and my pharmacist was cautious-eventually being the one who saved me). This pharmacist said the one pain prescription the surgeon had prescribed was in the same 'family' as this medication. Mike tried it for a day and after the weird things he experienced, he decided they weren't worth it. It is funny that the pain in the areas where the surgery were done aren't that painful. The pain is still in his heart. He feels like something is grinding in his heart. ALWAYS.
I'm grateful for the help, love, support, prayers, and blessings so many people gave. I know everyone truly wanted the best for us and were hoping to relieve the stress Mike and I were feeling. I KNEW it wasn't a life or death situation by ANY means. I knew in the end everything would be okay. But, I also knew that we needed extra help. He didn't recover like a normal patient and I am very grateful for all the doctors, nurses, and medical knowledge available. I'm just really glad we got out Friday afternoon instead of dragging it out longer and longer. My heart goes out to the many, many people who are suffering so much more in and out of hospitals in more dire circumstances. =( And I truly am grateful for wonderful medical professionals. I am NOT saying that this surgeon was horrible by any means. But, the lack of communication was frustrating. I also just wanted to answer all the questions we'd received in one loooooong blog post. It's simply easier that way since I'm limited in talking.
Thanks for the prayers, texts, fasting, blessings, meals, drives back and forth and back and forth and ... THANK YOU!
*********** UPDATE:
Mike lost 20 pounds in 2 weeks. (11+% of his body weight). He needed rest from the bed to the couch. His fatigue was like mine- Train Wreck Fatigue. Pure exhaustion, ESPECIALLY after he ate. If he ate more than 1/2 cup of food with 2 sips of water, he would vomit. By 4 weeks he had lost almost 15% of his body weight. It has been 8.5 weeks since his surgery and he still can't eat more than 1 cup of food per meal. He can't even eat 1/2 cup of thicker foods like mashed potatoes. He hates eating. But his weight has finally stabilized. His heart also stopped grinding and he doesn't need the beta blockers. =) He has had a cough for more than 4 weeks, though. =(
