Not The Most Patient Patient
That’s me after trying to send my son a text from UVA Hospital yesterday but having no signal, and after waiting 3 hours in the surgical family waiting room, and then another 3 hours in a pre-op room. After not eating and drinking all day. Operating rooms are like runways, and Joe and I felt like we were crammed on a plane and stuck on a tarmac for 6 hours waiting for take-off.
I’m amazed at how the medical world is tuned-in and so responsive to physical pain but almost oblivious to the suffering a person like me goes through when I go without food and drink for nearly 24 hours. Waiting was a sentence, and I would have thought that the doctors would be more aware that a person needs to be strong and in good shape before a surgery (laparoscopic), and not weak and tired and full of stress hormones.
As someone who’s been managing Chronic Fatigue Syndrome for most of my adult life, I am already in a deficit and often have to gear myself up to just go grocery shopping and run errands. After so many hours of being hungry and waiting, I was suffering from sensory overload, to the point where people’s voices made me jump. It took so much energy to listen and even more to respond that I was wishing everyone would only say what was necessary. Small talk drained me. I described it to Joe as if he had just been through a boot camp obstacle course, followed by psychological mind testing games, and all while going without food or water. It hurt.
For a while in the main waiting room, I stretched out as best I could, closed my eyes and drifted, letting the sounds of all the people’s voices float by in random pieces like a sound collage. That was helpful. I remembered Norman Cousins book about getting through a heart attack (my issue was far less serious) by staying very still and conserving his energy.
But by the time I was in the pre-op room waiting for the surgical procedure, I had broken down and was crying. Nurses and doctors from the surgery team came in and out to talk to me, but I honestly couldn’t process most of what they were saying. Their friendliness was in such contrast to my physical and emotional state that it made me more irritable, (although there was that one funny anesthesiologist who had me cracking a smile). Joe put on a phone recording of birdsong for me. That, and the few slices of navel orange contraband that I sucked the juice out of in the bathroom were lifesavers.
My surgeon came in and put me at ease. He does liver transplants, so I knew that he was more than capable of removing a large (benign) 12-centimeter cyst on my liver and bunch of medium sized-ones, and that it would be kind of routine for him. From the moment I met him at our initial appointment, I felt I would be safe in his hands. I felt seen and understood, and I received more information from him in the first 15 minutes than I got from the several doctors I had seen earlier, after I ended up in the local ER with severe pain on my right side. One doctor actually mentioned taking my gallbladder out to make room for the large cyst that was pressing on it.
Initially, a CT-SCAN was done to rule out appendicitis, and that’s when it was discovered that I have a polycystic liver. I learned that it has a heredity component, but that many people have them and never have a problem. The doctors don’t know why mine got so big.
Back in the pre-op waiting room, eight months after that ER visit, there were so many people to meet when I wasn’t up for meeting people and couldn’t think straight when they asked if I had any questions. The only questions I could think of to ask were “how long after surgery until I can I eat” and “when can I take a hot bath (two weeks!)
“I don’t know. I don’t remember,” I heard myself say a couple of times when I was asked the same typical questions, ‘When’s the last time you ate, drank, went pee?’ What’s your birthdate? What’s your doctor’s name?’ By the time I got into the OR, it was so late that shifts had changed and many in the team were new to me.
What was in that oxygen? The last thing I remember was an oxygen mask on my face. When I came to, I was dreaming that I was part of the team working on my own surgery. I can’t remember if I actually said “Is Trump still president?” or whether I was telling the story of what actually happened last year after my first colonoscopy.
My doctor called Joe to let him know it went well. The post-op nurse called him soon after, asking him to come to my room. She had asked me if I wanted crackers, and I answered “But my husband has the best snacks.” He came and I happily ate a leftover omelet, with feta cheese, spinach and olive tapenade, some Brussel sprouts and cheese and pretzels.
About an hour after that, Joe and I were ready to head home (a three hour drive), but we stopped near the University to get a dessert snack. I was woozy on my feet but walking well enough to buy my own raisin oatmeal cookie to go with the Starbucks tea that Joe got me. I met a drunk man near our car who thought I was drunk too.
High Five! We were on our way, and were both amazed that we pulled it off, that I still had my gallbladder and that the post-recovery pain was less than we thought it would be. Less, that is, until the anesthesia and meds wore off and I woke up in the middle of the night loudly vocalizing pain and unable to find a position I could bear.
No more skimping on the meds we thought, but we later learned that painful episode, and a few others like it, were due to the trapped CO2 gas that they fill patients’ abdomens with in order to have room and a view to do laparoscopic surgery. Oddly, I felt the pain as much on the right side of my neck and shoulder as I did at the wound site. A little googling explained it as “referred pain.” When the gas irritates the diaphragmatic nerves, that pain is referred upwards through nerve connections, eventually landing in – and aggravating – the shoulder.
So now I’m on the porch listening to real birds and feeling very thankful that all is well.
April 13th, 2018 2:51 pm
Colleen, I’m happy your home listening to birds. It sounded horrendous. I’ve often wondered about all that before and after time and know it hasn’t been easy for Cori, Bill, or I. You really captured it well. but I’m sorry you had to have the experience.
Chelsea
April 13th, 2018 3:05 pm
Hi Chels, Everyone was so good and it’s a great hospital. I think I have to be more adamant about needing an earlier time for a medical condition. I’d have to haved fainted or threw up to get their attention. Crying doesn’t work unless it’s for physical pain. Of course you can’t guarantee anything. If my doctor had to do a quick emergency liver transplant I would have been bumped gladly and be happy for the person getting it. My brother died waiting for one he never got.
April 13th, 2018 3:23 pm
I’m glad to hear that things went well and you still have your gallbladder. They will tell you you can be up and about a lot sooner than you should be. Take 8 weeks and do nothing but heal. Advise from someone with 9 abdominal surgeries under her guts. Take care of yourself. The world needs your words.
April 13th, 2018 3:37 pm
Thank you, Anita! This is much easier, so far, than the two C sections I had with my sons.
April 13th, 2018 4:33 pm
I am so glad you are doing well, and sorry for the pre-surgery crap you had to go through.
April 13th, 2018 5:45 pm
Very happy you are ok!
April 13th, 2018 6:07 pm
I think I was still high on the anesthesia yesterday. Today has been more of a rude awakening. Thanks for all your thoughts! I wrote this more for the humor than to complain, but that was part of it, and to address that there is more to it than physical pain.
April 13th, 2018 8:22 pm
I’m so sorry you’ve had this experience, such as life throws all kinds of curves at us. And you know, it’s okay to also “complain” about it too – because there is no sense in denying the uncomfortable factor that totally encompasses all aspects in waiting – waiting for and on procedures, even if everyone (support staff care/physicians etc.) are doing their best …. there is no one manual for one size fits all as to how each feels, reacts and responds in these difficult situations – so no need to excuse this perhaps less to your liking side of yourself in this arduous moment.
And oh, I can imagine that now, more pain will embrace for you some time – as all of the after effects wear off – please take as good care of yourself as you can, rest and be well … I and hope you will heal well and in Godspeed.
Sending you good wishes and thoughts Colleen.
April 13th, 2018 8:39 pm
Sending healing thoughts. Do take all the time you need, listening to bird song and whatever other delights you can find. We are thinking of you.
April 13th, 2018 8:40 pm
So glad you are home healing and cysts are benign! Never let the pain get ahead of you. Take meds as prescribed even if you feel ok for the first 4 or 5 days. Then you’ll be home free! Walk when you can to protect yourself from clots. You’re going to feel so much better after that first shower. Sending many good wishes your way. Nurse Joe sounds like a great conspirator! Lots of 45 news today so things are perking along. 🙂
April 13th, 2018 9:33 pm
I am so happy this surgery is behind you! You had me scared for awhile, but now it is done. Sorry you had no food or drink. You can’t though – it’s not that the medical field doesn’t care or not interested – it is because if you eat-you could vomit during surgery and then you aspirate. I am sure they told you this. But I am again! I love you and hope you won be in too much pain in the days to come. XO
April 13th, 2018 9:34 pm
Sorry about all the crap they put you through, having to wait so long. Take care of yourself. I’m glad, though, that you got a humorous story out of it. Sending good vibes and lots of energy your way, my friend.
April 13th, 2018 10:19 pm
I know why they do it, She. The thing is that I could have eaten breakfast at 6 am when we left for the 3 hour journey if I knew the surgery was held up by more than 3 hours. Nothing after midnight same as nothing after 6 am considering that. It was too long and caused me another kind of pain.
April 13th, 2018 10:39 pm
I’m sending you my 6 words for Saturday early:
positive vibes, best wishes, more vibes
Glad you’re home and at least somewhat comfortable. Dig the birdsong, Sister. Relax. Rest up.
April 13th, 2018 11:20 pm
I understand now how hard it was for you and I am sorry! Sending healing vibes ! xo
April 14th, 2018 4:56 am
Sending big love and healing your way Coll. Sorry you went through so much and suffered with the lack of food. Now it’s time to focus on life and the simple pleasures all around you like the sound of birds and just being still and knowing that no matter what – all is well. xo ?
April 14th, 2018 9:39 am
So far the pain has turned out to be as bad as my cesareans, I think because I expected it to be easier and was avoiding the painkiller regiment every 4 hours, which when in the hospital for a week the nurses brought it on time. I’ve learned my lesson on that. The pain has taken a toll.Better today, (day2) I hope. Thanks all.
April 16th, 2018 7:54 am
I’m so glad you had a good surgeon and that the operation went well. I feel your pain about the long wait since I do not do at all well without water and food…. I don’t understand why even the best hospitals keep that inflexible nothing after midnight, no matter when the operation is scheduled. You could have eaten breakfast and still waited as long as overnight would be for the first person in the OR!