Patricia's Journal

Today was my follow-up visit with my surgeon, Dr. Lewis. So it meant hitting the road bright and early for the drive to B-ham. Had to get a chest X-ray first, then had the surgeon consult. Dr. Lewis is pleased with my progress. He said the X-ray looks perfect. My lungs are fully open and I can ditch the spirometer. Hurrah! He said my insomnia and anorexia are normal, and in fact most heart patients experience these post-surgical kinds of changes. Things will get back to normal over time though it varies by patient. He stressed to me that I did not just have surgery...that I had one of the most major kinds of OHS, a double valve heart replacement, so of course I will be tired and frustrated with my progress at times. I'm back to work next Monday and hoping my energy will last all day. I will need to pace myself for sure. Tomorrow is my last visit from the home RN. Once I go back to work, they don't come anymore. So I will have to drag myself down to the Coumadin Clinic for blood testing, which is a huge pain literally and otherwise, as it's clear across town in the medical district where there's (a) no parking and/or (b) limited expensive parking. I also want to do cardio rehab, but found out their only offered times are weekday mornings and early afternoons. So disappointed. Don't they realize some people work? I can't take time off to again drive clear across town, work out for an hour, then have to find a place to shower and drive many miles back to work. The job I start Monday is new (developmental assignment I competed for) so I think that would be really asking too much of a new employer, too. It's too bad that they don't offer evening or weekend cardio rehab sessions for those of us who work. Not everybody with heart issues is retired.

I took a few days off from blogging to quietly enjoy the holidays. Hard to believe that in 4 days, it will have been a month since my surgery. I wish I was improving faster. Had a bit of a setback with a fever for a few days. Fortunately it didn't send me back to the hospital. My appetite is nil, though. Nothing tastes good, not even old favorites. It's odd, but my stomach doesn't even growl if I go a whole day without food. Of course I know I should eat, but it's hard to force such a thing. My sleep schedule is still messed up too, so I sleep in bits and pieces when I can. I need to get back on track in the next few weeks though as I'm headed back to work. Hope everyone has a happier, healthier New Year!

Tomorrow I'll be getting a cheesecake that I ordered some weeks ago from a co-worker's son who was holding a fundraiser. Great timing as I'll have it for Christmas. DH doesn't like cheesecake so it will last me extra long. Between this treat and my recliner, I have it made now. Saw the cardiologist yesterday who said I look good and my incision is healing nicely. It's not a pretty scar though. I haven't been taking any pain meds and she thinks I should at least to sleep. I just don't like the way they make me feel. I admit the pain is constant at various levels, mostly around the incision. Recliner helps a lot in relieving that pull. I don't know what they did to my poor arms on that operating table, but they hurt something fierce, especially at the shoulder joints as if they were wrenched over my head. Heat packs help some. Everything will just take time and patience. I need to work on both.

Today was a big outing. I haven't been able to rest comfortably anywhere and our living room couch is too low and poofy; it doesn't have good support and is hard to get up out up of out. So we decided to shop for a recliner. I have I one non-negotiable: Made in USA. Yep, expensive. But will last many years, and we found a nice one that will be delivered Saturday. Trying it in the store was like Christmas and they were having a sale. I'm not a big shopper but this chair feels awesome!

A home health nurse is coming in a couple days a week to check my vitals, my meds, my incisions and a long list of other stuff. They are right here in town so it's handy. Tomorrow is my first trip to get my coumadin level checked at the clinic. Even though I got two bio valves, I will need to be on warfarin for a few months. You have to get frequent blood checks while on this nasty stuff. One reason I chose bio over mechanical valves is I didn't want to take blood thinners forever with all the risks and restricted diet. I also know I couldn't stand any ticking sound in my chest. Sure, steampunk is cool, just not in my chest.

As DH posted, I am finally home. It felt like I would never get out of the hospital. Let's face it, you never truly get any rest in there...but despite all the hassles, the PBMC staff went above and beyond. What a great hospital! There is so much I need to do at home, but I am restricted and my energy waxes and wanes. I have to pace myself. Will take awhile for my schedule to settle and my sleeping patterns to normalize. Good thing I have some time off.

Our update for Dec. 12: Finally the news we have been waiting for...Patricia can go home today!! So gather up the belongings, get the prescription drug package, etc. Drove home and after a short rest into the shower. The wound bandage/vacuum system came off in shower (as they said it would), so now no more devices dangling. Good show Girl! Your Dear Hubby.

Here is our update for Dec. 11: Dr. Lewis was here Sunday morning, "Patricia, you still have too much water so you will need to stay at least another day." :( So more of the usual bathroom, shower and walk. Actually walked THREE times today. Getting a bit easier to get in and out of bed. Final central IV line removed :) Appetite a bit better, but still more thirst than hunger. Hard to sleep as nurses and such always in to do some poke or prod- that is after they scan my wristband like some packaged item at a grocery checkout. Hang in there girl. Report and encouragement by Dear Hubby.

Update for Dec. 10: Recovery progressing just like the day before. Had to walk two times. Doctor feels still a bit too much water retention to allow a safe release-darn! Will take it day by day from now, they decide stay or go each day in the morning.

Dear Hubby's Update: Dec. 9 was a productive day for Patricia's recovery. Walk happened at least two times-maybe even three. Plus a shower. Healing going well. Just waiting for a bit more water/weight loss to allow for discharge from the hospital. Super effort my dear!

Dear Hubby's Dec. 8 update: Patricia took a shower and was in and out of bed to chair many times. The getting up and down is the most stressful, hence painful, part. No hall walk today but hopefully with some rest that can resume on Friday. Keep at it Girl!

Dear Hubby with Dec 7 update: Princeton Baptist Hospital is taking great care of Patricia. Wonderful doctors, nurses, staff and meals. Yes, meals. In a hospital. Full plates of potatoes, meats, veggies that reminds one of the golden age of air travel in the 1950's. Unfortunately, appetite is still down a bit. Girl is thirsty though...let the water, iced tea and cranberry juices flow. More of those mysterious hoses and tubes have been removed-all that remain are an oxygen tube, a portable wound vacuum and the cardiac monitor. Today was first day of walking...the entire length of the hall and back. Walk went very well, but it was still painful. Throat still a bit dry and sore so only a little bit of quiet conversation right now. Thursday should be a repeat of today with MORE walking. Way to go Warrior Girl! Dear Hubby wants you home soon.

Dear Hubby with latest update: After one night in the post-op recovery room, Patricia was moved to a regular hospital room. To do this she had to get out of the bed into a wheelchair. At the new room, into the bed with just a bit of help by the nurses. Regular food for meals and by mid-day the IV drip tubes were removed. Getting in/out of bed a few times today. Hopefully by Dec 7 walking can slowly start. Way to go girl !! Your proud hubby Steve.

Dear Hubby reporting on Patricia: Was able to see Patricia approx one hour after the surgery-she was looking good, but still deeply asleep. Nurses told me breathing tube would come out around 6 pm and that 8 pm would be the best time to visit with a chance of having her awake. Only at the end of my visit, around 8:30 pm, did Patricia briefly wake up. We spoke and she wanted some water. Visiting hours are over for the day. Recovery very smooth so far. Hopefully Patricia will get moved from intensive care to a regular hospital room on Tuesday.

Patricia's surgery has just been completed. She is being moved to the intensive care for recovery to begin. Dr. Lewis and team performed a TEE just prior to surgery that unfortunately indicated that both the mitral and aortic valve would need to be replaced. So the surgery was conventional rather than minimally invasive. Patricia wont awaken for several hours yet, so I volunteered to post the initial post-op report.

Monday Nov. 28th I started my odyssey of pre-admission tests. The first hurdle was the special CAT scan. The tech explained that my kidney function needed to be tested before anything else, because if that’s impaired, the CAT much less surgery can’t happen. She said the kidney function test would be done with a simple finger poke. Not fun but not a deal-breaker. She didn’t mention until said finger lancet was poised that she needed to fill an entire vial of blood from my single poor finger. This was a first for me. Wouldn’t it be easier to draw blood than squeeze a single finger that hard to get so much blood out? Well, it got done anyway, but because I’d been fasting for hours I was dehydrated and the blood wasn’t easy to coax (pound?) out. That was the first hurdle of the day, but of course the IV was still looming. The tech promised she would only try once and then send for the big guns. She kept her word and when she couldn’t get my IV going, sent for an RN. He got the IV in first try but also triggered Old Faithful in the process. Fortunately I had on a black shirt and dark olive pants. (Bonus: The cheery RN did include practical laundering instructions with his post-poke pep-talk!) Next I got to sit around for a long time with a big 20 cc syringe dangling fashionably outta my elbow vein while the CAT was prepped. After so much fanfare, the CAT itself didn’t take long. But the saline flush burned for some reason, and the contrast gave its usual unpleasant metallic aftertaste plus the embarrassing “Help!-Ima-peeing-my-pants” sensation that, fortunately, is just an illusion. CAT done, I thought the worst must be over and all that remained was paperwork. But what paperwork it was. Impressively piled to the ceiling. To give you an idea, my CAT was at noon and I finished the paperwork about 4 p.m., without taking any bathroom breaks or getting lunch or even a single sip of water. And I still wasn’t done. When told I needed to give blood (again with the needles, and they wanted 7-8 vials I think), I just about passed out. Again my dehydrated condition made it really hard for the tech to find a good vein and she was all apologies. Finally she hit a vein but it dried up and almost instantly clotted. She actually prayed aloud and the flow restarted without another poke. So I was literally witness to a bloody miracle, as Monty Python might quip. The last remaining hurdle was a simple chest X-ray. Why that couldn’t be done earlier with the CAT (it was in the exact same place) was bewildering. Even the staff admitted it’s silly to send patients schlepping all over the hospital grounds for this stuff, rather than grouping it together by place/function to save time and effort. Yep, this hospital is small compared to many, but we still need a physical map to find our way around. Tests finally over and having gone nonstop 12 hours with no sustenance, I requested...OK, DEMANDED...Cheesecake Factory. It was about a 22 minute drive from PBMC. It was surprisingly empty, no wait, we got a booth and everything tasted superb. I was just as excited by the salad that I so rarely get to have (Chinese Chicken Salad) as the cheesecake. Will post a photo of crowning achievement. Before I forget, let me wrap the pre-admin testing topic by saying that everyone I’ve encountered at PBMC so far, from the info desk folks to the RNs, has been genuinely kind and helpful. Nobody was gruff, abrupt, or impatient. I’ve had many and less-than-stellar medical experiences in the past, but so far the PBMC staff is exceeding all expectations. Their warmth and sincerity truly makes everything a little easier. ~Patricia

The trip to Birmingham last Sunday seemed like more like an episodic ordeal from LOTR, but that was just mere coincidence. When I picked dates, hadn’t even considered the fact that everyone would be returning home from the Thanksgiving holiday that night. So the drive took about 3x longer than normal due to post-holiday traffic. It was stop-and-go with the car in first gear most of the way. Plus a couple big wrecks mixed it up, so traffic went down to single lane for many, many miles. Good times! We left early afternoon (normally a 1½ hour drive) but finally got to Bham about 7 p.m. That meant we had to take a raincheck on Cheesecake Factory, because we had to check into the hospital’s hotel by a certain time. On the weekends, most of Princeton Baptist Medical Center’s (PBMC) entrances aren’t open. We had to park at the hospital’s east entrance and hoof it almost half a mile dragging our bags to get checked in. On top of everything else, DH has a broken foot (but my rebel/bad boy isn’t wearing his medically prescribed boot), so we must have looked quite a comical sight, both of us limping and hobbling along at a snail’s pace. I think during normal hospital business hours we may have been able to ask for a wheelchair or some kind of help, but only the ER was open Sunday night and the halls were deserted. We just walked slowly but tried to keep a quick sense of humor. You gotta pay to park your car at the hospital but if you leave the lot for any reason, you have to pay all over again when you return. So by the time we got checked into a room, neither one of us could bear the thought of re-hiking the ½ mile back to the car and driving clear across town in the dark, nope, not even for that rarefied cheesecake. We were hungry though after spending half a day trapped in I-65 gridlock. By a stroke of luck we discovered a Subway right in the hospital that was open for about 30 more mins after we arrived. Voila, dinner! (Admittedly a purely desperate impulsive move). Honestly though, that mundane turkey sub tasted amazing. Our onsite hotel room was quaintly reminiscent of a long-gone decade with Carter-era furnishings and avocado-green walls to boot, but it was clean. Was so exhausted I slept despite bursts of noise like sirens (our room was near the ER and also a helipad that saw action). I didn’t even mind the thwop-thwop-thwop-thwop of blades right outside the window. As usual, my writing is getting overlong, so I’ll stop here and force myself to parcel out the goodies. Watch for Part 2 tomorrow :) I'll try to remember to post it before we zip back to Bham. Cheers~ Patricia

Today Dear Hubby (DH) and I are headed down to Bham to get my pre-admission paperwork and a special CAT scan done a week ahead of my surgery on Dec. 5th. We have things to do in our hometown first, so we won’t hit the road until later this afternoon. We’ll be staying overnight right at the hospital’s hotel. Many pre-surgery hoops to jump through tomorrow. I imagine I will be mighty hungry by the time it’s all over. Gotta fast for the CAT starting at midnight tonight (I’ve never lucked out and gotten an MRI; seems I always end up having to get a CAT…which means fasting, the inevitable battle of getting the IV in, and the general unpleasantness of contrast dye!) I had a standard CAT in January 2016 when my world last turned upside down. I’m pretty sure that I’m way over the recommended max lifetime limit for CATs now with my darkly impressive medical history. However, this CAT scan tomorrow is a special kind needed for this specific surgery. I’d asked if I could get it done at my local hospital (thus avoiding the NASCAR-sponsored white-knuckle freeway drive to Bham), but the surgeon’s office wasn’t sure that they offer this kind of CAT here. In the end I decided it’s better to drive down and get it done by the folks actually doing the surgery next week, so they get exactly what they want/need. Otherwise it’d be my luck to have it done locally and it would be done wrong or not have exactly what they need, so I’d have to do it all over again. There’s a kind of humorous irony that I’m traveling so far to get a major procedure done at a smaller hospital. It’s about half the size of my local hospital and of course tiny in comparison to Cleveland Clinic, but Dr. Lewis says the staff at Princeton Baptist Medical Center is amazing, especially the nurses. I’m looking forward to finding out if that’s true. (Think that’s a first for me, looking forward to ANY hospital visit…:) DH and I also decided that despite the serious reason for today’s Bham drive, that doesn’t mean the trip itself has to be grim and joyless. Since I have to start fasting at midnight tonight, I’m planning on checking into bedtime with a last, lingering happy swallow of carrot cake cheesecake from the Cheesecake Factory in Bham. ~Patricia