Jacqueline H.
Post-surgery cardiology visit
Sep 18, 2007
My PCP had taken me off one of my Coreg doses, but Dr. D. said that the kind of Coreg I have been taking is not long-acting so once a day is not good enough. He is switching me to a one-a-day version instead. I was at 118/80, which seems like a good reading to me.
The only downside was that when they did my EKG, I was throwing a lot of PVCs for the first time in years. Dr. D. had never actually seen them on any of my EKGs up until this point, although I told him about my history with them. I wasn't having any caffeine yesterday, but I had been having some stomach soreness, so maybe that influenced them. In any case, I don't have to worry about them unless they start to make me faint, which they never have.
Faculty picnic
Aug 30, 2007
I don't know if it was because everything was pretty soft or what, but I was still hungry when I finished my first plate, so I had a second piece of fish (another 1 1/2 oz.) and a tablespoon of baked beans. Then I felt satisfied and was able to watch Dan and Danny eat dessert (petit four cakes) with no envy at all.
Nonetheless, I realized something. I ate that second plate more because I was anxious about the situation than being truly, 100 % hungry. I was tense because I spilled something on my blouse and didn't have my Shout stick with me to make sure it didn't set. I was even more anxious because I realized I am ALWAYS anxious when we are in a social situation with Danny and a "normal" population. He was behaving just fine, although I was embarassed when I noticed his nails were not as clean as I'd like. But I realize that I am ALWAYS tense when I am around him with other people because *I* don't know how to behave in front of "normal" people when I am with him. We do tend to still talk to him like a 4-year-old at times ("Dan, don't shovel your food." "Dan, wipe your mouth, baby, you have crumbs on it.") and I feel self-conscious that it comes across as if I am a control freak because he is, after all, 20, developmentally delayed or not. It makes me feel like a bad mother in front of people I don't usually spend that much time with. I guess I only really feel comfortable in front of close friends or other special needs parents, because I am NEVER self-conscious about my interactions with him in situations with people from those two groups.
And of course, when I feel that way, what do I want to do to stuff down those feelings? I want to eat something to distract myself from feeling crummy. I think there was definitely some of that going on tonight in that second plate of food.
The whole thing left me feeling kind of sad and down tonight, like a failed mother. That's even worse than being fat.
First day back to work
Aug 27, 2007
As I expected, I ate SO much less today because I was back at work! I had 1/2 c. of cottage cheese for breakfast, a cheese stick at 11:30 when my blood sugar felt low, then 3/4 of a chicken fillet and 1/2 slice of tomato for lunch. (And I do mean half a SLICE of tomato!) In the mid-afternoon when my sugar felt low again, I ate a very small banana. I was starving for dinner when I got home at 4:30, so we had dinner early and I had a HC TV dinner of meatloaf and asparagus. Then I had a board meeting tonight, after which I had some crackers with melted cheese and salsa. In between, I got most of my water for the day, and at least 70 gm of protein, so I feel I did well.
While I definitely felt I grazed less at work, it is still going to be a challenge adjusting to eating at school. I think I've got great choices there, but it's just getting over the psychological adjustment t o eating differently in that familiar place. It felt very strange to go through the various lines (entrees, salad, deli) and fully grasp exactly how little I could eat. I picked out the chicken patty and two tomato slices, but I could NOT eat all of that when it came down to it! It was definitely weird as well to be the person at my lunch table with the smallest selections and finding that every one else's plates looked inedibly huge to me, even if they were objectively normal lunches. (For instance, one person had a sandwich and some yogurt with fruit and nuts mixed in -- very healthy, but about six MEALS for me.)
It was an eye-opening experience. The next big test will be to see how faculty in-service goes tomorrow.
1 month out
Aug 22, 2007
Because I'm tolerating solid food very well, Valerie was pleased with how I am doing. She told me I should expect to lose 3-6 lbs a month from here on out, which is less than I had heard on the boards. I'm just glad that the next day or two after the visit, the scale started moving again. After my shower this morning I actually weighed 255, although I won't count it as an "official" weight until I go to the office.
First walk around complex
Jul 23, 2007
I was mostly lazy today because it was raining for most of it, but I did finally go for a walk around the apartment complex tonight during the evening news. Instead of just walking down to the end of the building, or taking a short cut around, I did the full loop this time. By the time I reached that last turn, I was tired enough to want to rest for a second, but I still managed to get back home without giving up and calling Dan on the cell to come rescue me.
I’m looking forward to trying protein drinks starting tomorrow. The clear liquid diet is starting to taste incredibly monotonous with nothing but fruit flavors and broth. The thought of a vanilla or chocolate protein shake sounds mouth-watering at this point.
I have been having food dreams. The night before the surgery, I dreamed I was eating something at my mom’s house and remembered I couldn’t eat it, so just chewed it up and spit it out. Last night, it was chasing giant slices of pizza that were blowing away on the wind in a park or cemetery. I keep reminding myself that it isn’t that I won’t ever eat again as that I just can’t eat as much of the same things.
Meanwhile, something must be working as it is supposed to as I am now down to 269.
Coming home and too much food!
Jul 22, 2007
I came home on Friday, July 20, just around noon, barely 24 hours after I had left the operating room. So far, I have been feeling good – no pain, and very few problems adjusting to the liquid diet except for boredom. I am tired, but that’s been the only true indicator I’ve had such a major surgery.
Tonight was the first night that I overate. I had gone over to Karen Rosenbaum’s for tea and sipped at it comfortably, and when I came home, I had some beef broth. The big mistake was in also having a half a container of sugar-free jello after the broth. I sort of felt I was getting full before that, but I made darn sure of it by eating the jello, and now I’m paying for that with feeling that horrible Thanksgiving overstuffed feeling. I thought that since everything was liquid, it would just go right through my pouch. Evidently not so. The combination of the broth and the jello is definitely ‘staying,’ and not only does it feel uncomfortable, but I really would like to drink some more water, but I’m afraid to for a while.
I guess I can only view this as the first lesson learned with my new stomach: it really does have limits.
A good night and good luck
Jul 20, 2007
I had a really good night. When I woke up around 1:30 a.m., I had a little bit of gas pain, so I got up and walked around for a couple of laps. I then slept pretty well most of the night, getting up to go to the bathroom only once or twice more. (I am kind of dehydrated from having nothing but the IV.) My blood pressure was kind of low when they did my vitals around 5 a.m., 9050, but I felt fine and they figured it was because I was sleeping.
I have seen a whole slew of doctors this morning – a resident whose name escaped me; Dr. Patel; another group of residents led by Dr. Patel (they got a kick out of catching me working on my laptop); and Dr. Seelagy’s partner, Dr. Steeger. The last turned out to be a bit of good luck. Just half an hour before, I had been putting my CPAP mask back on and the plastic where one side of the elastic straps attach to the front of the mask snapped off, making the mask unusable! I was sitting here plotting what needed to be done as far as calling the doctor’s office and medical supply company when Dr. Steeger came in. He was able to give me the scripts I needed and we should be able to stop by Oxymed when I am discharged since we pass right by it on the way home.
The only downside of this morning was that the first time I passed gas, it wasn’t just gas. I only made a small mess, but I had to have my sheets changed and I lost the gown I had been using as a robe. Most of the nurses have been great, but the assistant who changed the bed was short with me about the gown because they don’t keep plus-size gowns on this floor. Well, why the hell not? And I’m sorry, but if I need it, I need it. I was nice, though, and said that it wouldn’t be a problem since I had my own PJs with me and I’d just wear them after my shower. The only negative is that I can’t walk in public until I do get a chance to change because my bottom is hanging right out the back of the gown I’m wearing! Or I’d be up walking a bit more.
They have promised me some ice chips and then liquids this morning and if I tolerate them, I’ll be going home around noon or 1 p.m. I feel good, so I have no problem with it. Everyone (including me) is impressed with how fantastic I am doing. All those prayers must be working. J
First walk
Jul 19, 2007
I started to get sleepy while switching back and forth between Supernatural and a Larry King interview with Tammy Faye Messner (who is clearly in the final stages of her cancer, weighing in at 65 lbs), so I decided I better get my walk in. I walked up and down the unit, which is smaller than I realized and kind of cute! It is officially the [somebody or other] Private Pavilion and there are a couple rooms that appeared from the outside to be a little more upscale than mine. As much fun as I had meeting [??] while staying at Princeton, it’s much more relaxing to have a private room. Not that I am spared some of the same challenges I had at Princeton with my second roommate – the gentleman across the hall appears to not know exactly where he is or why.
I walked a first lap from one of the unit to the other with my IV, but the wheels were so loud, I felt it was inconsiderate to other patients to be doing it like that at this time of night. I went back to my room and called for a nurse, who disconnected me from the IV when I explained my concern. She was also a sweetheart and took a picture of me (still attached to the IV) as my first walk-at-the-hospital picture. I walked two or three more laps of the unit without the IV, but it was really warm outside my room and I found that I was starting to get kind of weak. Not very, but enough to remind me I had had surgery today. (Which has been surprisingly easy to forget!)
The nurses are very happy with me: I walked a good distance in their estimation, and I’m peeing, which is also cause for excitement on their parts. Yay, me! So, now I am all hooked back in to all my equipment, from the inflatable boots to my new, vitamin-filled IV, and am going to settle in to watch TV, read and then go to sleep. I feel good, although another staffer just too my sugar and found it to be 201, probably thanks to the sugar water IV they have been giving me all day.
What a blessed day! I hope my surgery sisters have had as successful a day as I have had.
Evening of surgery
Jul 19, 2007
I finally started experiencing some pain around 6:30 tonight. It was more like muscle pain in my abdominal wall maybe because I wasn’t being as careful in how I moved as I probably should be with major abdominal surgery. I asked for some pain killer, and they gave me some Dilaudid in my IV line. Holy @#$!$!! I felt it flowing in my arm and then realized it was making me woozy just within seconds. Since I was sitting up in the lounge chair, I decided I had better move back to my bed. I made it there alone, but I noticed that my eyes were tracking slightly, which was a first for me with a medication. It’s definitely an effective drug, though; my pain was gone within just a few minutes. I was also falling right asleep, so I called the nurse for water for my CPAP because I didn’t want to sleep without it on a night like tonight, of all nights.
While I was waiting, I called Dan to ask him to remind me about taking the Dilaudid because I was concerned that I would not even remember tomorrow morning. While we talked, he told me Karen R. was on his cell phone line to check up on me. We arranged for Karen to call me and we talked just very briefly as I was drifting off from the drug. If I am discharged tomorrow, she said she would plan to give me a day or so at home and then stop by to see me there. (Guess we better find a temporary location for those dish boxes removed from the closet while we wait for the FIOS installation after all, yikes!)
Once my CPAP was all set up, I read for a little while and tried to watch TV, but was just too sleepy, so I took what turned out to be a short nap. My night duty nurse, Andrea, came in, took my vitals, and then told me the game plan for the next few hours: she is the one who is finally going to make me get up and walk the halls, and I have to do it before 11 p.m. Fortunately, I’m feeling awake and pretty good after my little nap, so I’m going to do it around 10 p.m. or so unless I find there is nothing worth watching at 9 p.m. Andrea also gave me permission to unplug my IV for trips to the bathroom, which is half the battle in remaining active, so I’m happy.
If all goes well tonight, I will start on my clear liquid diet with breakfast in the morning, and if I am tolerating things well, I will be released tomorrow afternoon. Woohoo, is that quick or what? But I have to say that I feel so good, I don’t feel rushed about it at all.
Both Andrea and one of the other night duty nurses told me that I will most likely begin to experience gas pains during the night tonight, and their best advice is to try to walk them off before taking any more drugs. If I find that my pain seems more like a muscle pain, Andrea also suggested trying the Torodol instead as it is especially good for that.
I am so glad I did this. And I’m so glad people have been praying for me – it feels as if all those prayers have been answered with a so-far easy and good surgical experience. Thank you to all my friends who are thinking of me! I love you guys.
Live from the hospital
Jul 19, 2007
Not only did I survive the surgery, I actually feel pretty good! Only minor discomfort at this point, and no nausea at all. They haven’t gotten me up to walk yet, but I’ve been up several times to go to the bathroom since my catheter was removed. My nurse in recovery was a real sweetheart (nina? Nila?) and she took excellent care of me while I readjusted to being aware. When she dropped me off in my room (248, a small private room), she gave me a hug, which was very sweet of her and welcomed by me. I got moved into my room around 2:30 or so.
I’m still hooked up to an IV, heart monitor and compression stockings (which I really like and wish I had at home for massage!) I have my incentive spirometer and I’m blowing in it as often as I think of it because even I have noticed that I have some fluid in my left lung and that my sats aren’t running well if I sit and breathe quietly the way I often do.
Every time I go to the bathroom, I have to go in a little pan thing at the front of the toilet which measures my output. I seem to be averaging 100 ccs a visit; don’t know if that is good or not. One of the residents stopped by to take a look and listen and he said it is very important that I stay well hydrated, which is going to have to rely on my IV, since I can’t have anything, even ice chips, just yet. My mouth is horribly dry and my throat is slightly sore, but the nurses are giving me lemon-glycerine swab sticks to use in my mouth.
Dan and Danny stopped by around 5 for a little bit. Dan helped immensely by unpacking my bag for me, putting away my clothes, setting up my CPAP, and setting up the computer. I now feel all ready for my overnight stay! He even brought me the new TV Guide to read when I asked.
Need to rest now; I’m going to watch the cute little TV they provide (for $6 a day, which is cheaper than Princeton was) and just relax for a bit.
I arrived a little before 7 a.m. at the ACC unit. Dan just dropped me off since I wanted him to make sure that Danny got his bus at 7:40 a.m.. He still wasn’t back to the hospital by the time they took me down to holding a few minutes after 8 a.m., but he finally showed up around 8:20 a.m. This was better than Dr. Fares, who was markedly late and apparently has a reputation for it! He was in the hospital, but apparently down talking to the residents for some time, finally showing up a little after 9 a.m. I don’t even remember going to surgery; last thing I knew, I was still in the holding area, and then I was in recovery, slowly waking up. Dan says Dr. Fares told him it went “perfectly,” as he had anticipated, and I’m likely going home tomorrow sometime.