Wednesday, January 30, 2019

The Surgery

It's been interesting for me to hear how this surgery is handled at different hospitals. There are differences from place to place. Here's what happened with mine.

I was asked to check into the hospital on Sunday, January 13 at 12:30pm.  Because it was a weekend, I'd have to go through the emergency room. Jim and I arrived and got checked in and taken to the fourth floor. The third and fourth floor at IMC are dedicated to cardio and pulmonary patients. It took a couple hours for everything to be processed and get us into a room. We were given a list of about a dozen things that would happen that day. They ranged from bloodwork to Xrays to watching patient videos. When they came to get me for the chest X-ray, they brought a wheelchair and insisted I ride in it for the xray, because it was a long walk away. It was really disconcerting.

That evening, the kids drove down and we went out to dinner as a family. Saying good night to them as they left was really tough, and I struggled not to cry. Nerves were setting in, and I was having dark thoughts about whether or not it would be my last chance to see them.

That evening, I was given a couple of hospital sponges full of stuff that looked like iodine. I was instructed to shower and clean myself thoroughly with them, first one and then the second, paying special attention to my chest. Another hygiene issue on the list was shaving. My surgeon said that they basically shave men from neck to ankle. For me, they just wanted a bikini type shave. I have had laser hair removal so they skipped that step.

Jim and I tried to sleep together on the cot thing they had in the room, but since it's more narrow than a twin size bed, I eventually gave up and slept in my hospital bed.

At 4am Monday morning, they woke me up. They had me repeat the iodine shower. The phlebotomist came in and set a special IV that was in an artery in my left wrist. This allows for continuous blood pressure monitoring. (Fun fact, 16 days later, the whole underside of my wrist is still really colorful from this). They also set a regular IV. They had me put on the hospital gown. I also met with the anesthesiologist, who seemed very nice and very good at his job. After that, they gave me a shot of something to help calm my nerves, which was very much appreciated. Things get a little fuzzy after that.

Around 7am, they came with a gurney for me. They took me down to the second floor where surgery would take place. Jim and I said our goodbyes there. I waited out in the hall for a few minutes and then they wheeled me into the surgical suite. They knocked me out at that point, and I don't remember anything for hours (thank goodness!).

Surgery went very well, and very quickly. I was only on bypass for about 90 minutes. There was around an hour on either end of that to get me ready for surgery and to observe my heart working, then sewing me up again.

The next thing I remember, I'm in the intensive care unit.They have my hands tied down, and the breathing tube is still in place. The night before, when I'd talked to the respiratory therapist and she got my initial spirometry test, I'd mentioned that loopy me may not be a fan of the breathing tube and may try to pull it out. I'd tried to mentally prepare myself for waking up to the breathing tube still being in place, and I'm glad I did. It was one of the bigger fears I had about surgery, but it ended up not being too bad. I was completely unable to talk, and I had to make sure I breathed with the tube. A couple times I got off rhythm because I coughed or swallowed. That gave me a sense of being unable to breathe, but I got back on track quickly. I was disappointed that my husband wasn't in there when I woke up, but I guess they were waiting for me to stabilize a little before they brought him back.  I'm not sure how long the tube was in place, but I'd guess a couple hours after I woke up. After a half hour or so, they brought my husband back. They untied one hand so I could hold his hand, and I wrote a note asking for other hand to be untied so I could scratch my face. While this time is a little fuzzy, I was more or less mentally there and knew not to mess with the breathing tube. I felt weak and a little sore, but not too bad.

FINALLY, after a couple hours and a few written notes from me, they had husband leave the room and removed the breathing tube, which wasn't a big deal.

I was desperately thirsty but they didn't feel I was ready for that yet. The nurse finally gave in and let me rinse my mouth with water and spit it out. We did that a few times and it helped a lot. I graduated to getting a little bit of water and ice chips, and I was feeling better. By this time, it was around 8pm. We were told Jim couldn't spend the night in the ICU, so I sent him home to get a good night's rest.

My night in the ICU was not a good one. I'm not 100% sure of my memories, because I've heard stories of ICU delirium, but I am pretty sure my memories are accurate. Shift change happened and I got a new nurse. The new nurse would not let me eat ice chips or swish water in my mouth. She insisted I'd just swallow the water, which irritated me. Finally she did give me something to drink. I am not sure if I swallowed some wrong or what, but I know I started coughing and ended up throwing it up. She changed my hospital gown and then refused to give me any more painkillers or water/ice due to it. By this time, I was really starting to feel pain, both in my incision and terrible back spasms. I am not sure if it was oversight or on purpose, but for the most part, she put the nurse call button/remote thing in a place that I couldn't reach. I did beg her to do something/anything to help with the pain, and mentioned that the back spasms were the worst. She did rub the worst spot on my back for a couple minutes. Because of that, I don't think my mental nickname of Nurse Ratchett was fair, but it was a really rough night.  She did say if I could sit in a chair, she'd give me ice chips and pain meds, so you better believe I drug my carcass into a chair. Around shift change, they were amazed that I was already in a chair and decided I was ready for the regular floor. I was on board with that because I did not like ICU at all.  Before I could leave ICU, they wanted to lose a couple wires. So, they removed the artery IV and this other giant mass of wires that were plugged into my right jugular vein. I was enthusiastically on board with that because I was overwhelmed at all the wires and tubes connected to me. Besides the two mentioned, I had one or two regular hep lock IVs, a drainage tube (that was two tubes going into my abdomen, but combined into one a couple inches after leaving my body), two wires going into my abdomen and touching my heart in two different spots to pace my heart if needed, a constantly EKG which had half a dozen electrodes taped to my body and the box in the pocket in the hospital gown, and a urinary catheter.

Jim was back by then. He and the nurse thought I should try to walk from the ICU to the regular floor, and I thought that was a super idea. So, they helped me out of bed and I walked to the elevator to go back up to the fourth floor. I was successful, though I was taken aback by how weak and tired I was.

I ended up spending Tuesday-Saturday nights in the hospital. It was a lot of pain, lack of sleep, and lots of blood draws. Interestingly enough, back spasms were more painful than the incision pain. Jim was a rock star, trying to massage away the pain. He bought this wooden tool that looks like the ice cream cone from Melissa and Doug playset to try to preserve his thumbs. It helped so, so much. I can't imagine how the time would have gone without him there to help get me comfortable as possible in bed, help me get out to go to the bathroom, and cheering me along for my walks. After a couple days, I asked if they could give me a muscle relaxer for my back, and that made a pretty dramatic difference.

One thing that surprised me is that many patients after a major surgery like this find that their blood sugars are really high- they believe it has to do with the fight/flight response. By treating the high blood sugars with insulin, it prevents problems down the road. They found if they didn't treat the high blood sugar, a surprising number of patients who weren't diabetic before leave the hospital insulin dependent. My blood sugars were a bit high, so for the first 3 days, they were giving me insulin a few times a day. I was also on a "carb controlled" diet, but it sure seemed high in carbs to me.

Pain relief is a weird thing in hospitals now. I think they want patients comfortable, but they're really scared of addiction. My pain meds were "as needed", which means I had to request them. It took me a while to realize that, so there were some painful moments where I was trying to patiently wait for them to bring them. I felt awkward ringing for the nurse because there were a couple patients on our floor that were..... high maintenance.

Each day that went by meant less tubes and wires connected to me. The chest drainage tubes were painful and deeply unsettling. It was weird to see all that crud coming out of those tubes. The other strange thing is the machine that held the stuff that came out made this bubbling sound. It was a pleasant, white noise sound until you realized what it was. I called it human stew simmering. When I referred to it as such, the nurses invariably choked laughing. Removing them was mildly painful. What REALLY hurt to remove was the pacing wires. Ouch.

By Saturday, I was tube free. I had a hep lock on my right hand, and the EKG wires, but was otherwise free, which was nice. However, the hep lock was good for delivering some medicine, but not for taking blood. Phlebotomists came at 3:30am each morning to draw blood. My arms are extremely colorful from all that. We had hoped to go home Saturday, but I still wasn't breathing very well and my oxygen was a little low, so I had more more night.

Eventually, I was released on Sunday and was able to go home.

I've now been home from the hospital for 9 days. I still feel quite sore, but I am not taking the heavy painkillers, and just take motrin. It's hard to be so sedentary, but on the other hand, I don't feel well enough to do my regular routine. I am not allowed to drive until the surgeon releases me, which will hopefully be 2/27. The PA removed the steristrips from my sternotomy, and I'm very pleased with how that's healing. My outward scar is only 4 1/4" long, which was a pleasant surprise. I don't think it'll be all the visible in the first place, and most of my shirts are high necked enough that it won't be showing most of the time.

I think I had unreasonable expectations for recovery time and pain management. That has been frustrating. However, each day I feel a little better and a little stronger than the day before.

I have been completely overwhelmed with all of the support and love from my friends and family. People have been so kind and helpful and it has made me emotional. This has definitely been the most difficult thing I've ever been through, but having my amazing husband, kids, family and friends lifting me up has made it immeasurably better. I can't imagine going through this without having a huge support network.

Wednesday, January 9, 2019

Consult with Surgeon #2 and scheduled!

Today I had the surgery consult with the second doctor, which is the one that I had initially chosen as my first choice. I have a couple friends in the valve research/clinical trials sector, and they both recommended Dr C. Additionally, my uncle's friend had minimally invasive valve repair last summer, and had a great experience with Dr C.

Today I arrived at the office, and I was given the same paperwork I've filled out several times before. They weighed and took my blood pressure (113/72!!) and took me back. I first met with the PA while Dr C looked over my echocardiogram and other information. Lori was really great. She had an excellent bedside manner and was very informative and engaging.

Eventually Dr C came in and we had a great conversation with him. We kept getting sidetracked because he enjoys photography as well (though he's a Nikon guy.  *sigh*) He impressed me with his knowledge and number of surgeries he does. He agreed with Surgeon #1 that the sternectomy route was the better way to go since I'll most likely need both my mitral and my tricuspid valves replaced. He said he's only aware of one doctor in the country that does both through the side of the chest. He's observed that surgery and feels like he could do it, but he hasn't done it. If I wanted, I could be his first. I politely declined. I'll go old school for this. I told him that my first priority is to have a good repair that will perform well and last a long time, and I'd rather have him start off in the center than decide to switch to that after a while. My only concern with the sternectomy is that the scar be straight. He genuinely offered to let me draw the incision line. I think I may take him up on that!!!

We scheduled the surgery for five days from today. I have been taking fish oil supplements, and it turns out they act a bit as a blood thinner, so I have to be off of those before he can operate. I will arrive at the hospital on Sunday morning. They'll do all kinds of pre-op stuff, and then I'll go into surgery Monday morning. They said it'll take approximately 5 hours to do the repairs.

I have to admit that as this has drawn on, my anxiety has ratcheted up, and I probably have been drinking a bit more than I should. I called my cardiologist and asked for her to prescribe something for that, so I picked up that prescription today. It's not Xanax, and I'm a little disappointed, because I've been interested to see what that's like.

After we met with the surgeon, we were able to say a quick hello to an old high school friend who happens to be a cardiac PA, as well as one of my hiking friends who also works on the clinical side at IMC heart institute. He had really great advice, insights and food for thought. While I am a good candidate for repair, I need to consider what I'd want for replacement if I can't be repaired. Do I want a pig/cow valve (more organic, no blood thinners, but doesn't last as long) or mechanical (probably last forever, but a lifetime of blood thinners and accompanying risks). It's definitely something to think about.