Happy Mother's Day to all mothers of all family shapes and sizes!
Continuing to get better in a frustratingly non-linear way. I have a good day, then a bad day, then a good day and I have yet to figure out what the pattern is.
Pain stuff: I'm off the long acting narcotic. I was a bit naive about that because I believed Marianne, Dr. J's nurse, who said, "Most people, once they drop either the morning or evening dose, don't even notice it." Obviously, I am doped up and my own nursing judgement is questionable. When you take away 30mg daily MS Contin, you're gonna need more short-acting oxy. So I was really disappointed that instead of needing 3 - 4 tabs of the 5mg oxys in a day, I shot up to needing six per day immediately after stopping the long acting. Which is stupid, because that's a good thing. I need 4 - 5 a day now, and so far today it's been six hours since I've had any narcotic, and I'm doing okay. There really is no such thing as pain-free. But I can walk around and do small things at 3/10, which is generally where I live. I'm scheduling the neurontin, and trying to schedule the ibuprofen, but at the amounts I'm taking, it's really beginning to tear up my stomach. And tylenol is nothing but a sugar pill that contributes to nausea...not just worthless, but actively harmful.
Breathing: My breathing feels easy, but the highest I can get on the IS still is 1000cc...today I'm doing about 800cc. I'm walking every day but yesterday, no less than 3/4 of a mile, but generally about 2 miles. On Wednesday, I actually jogged! It felt awesome! I suspect it was entirely too much too soon, but it felt great at the time. I'm coughing a little today, and I think it's because I did nothing yesterday. Later today, I'm gonna lay on my stomach and have Mark percuss my back. I had a pleural effusion when I left Arizona, and I suspect I've still got fluid in there....atelectasis if nothing else. I don't think walking alone is getting rid of it. I have my IS next to me today, and I'm gonna try working on it more. Chase, the trumpet-playing, distance-runner 16 year old, can put 3500. That kid makes me want to try harder. My heart feels great. Can't even explain that to you because I would never have said my heart felt bad before this. The heart LOVES the little bit of exercise I'm doing. I can feel it. When I push it, I'm feeling strain in my vessels on my left neck/upper chest.
Time off: I got the notice that Cigna approved short term disability until Monday, June 6. I'm glad. While I think it's very possible that I'll be off all narcotics after three weeks (which will be this coming Thursday), and I'm using one Valium maybe every other afternoon, I am not strong yet. I can get up and get showered in about the same time, and get dressed, but then I need about a 10 minute rest before I can do anything else. Mornings are difficult. They're getting better, but there is no way I could do a full workday today, or tomorrow. And it's hard to visualize me being able to do that next week, which will be one month out. My lifting restriction is 5lbs for six weeks, and I asked for the whole six weeks. I don't have to lift patients anymore, but I do have to help some patients to and from wheelchairs to exam tables, and some of our patients have legs that weigh considerably more than 5lbs. I am positive my coworkers would help me, but I'd feel safer after the six week CXR.
Concentration: Despite taking not a ton of drug anymore, I still feel out of it. When I'm in pain, I bark and feel badly about it. I have all these books I want to read...and I've finished two since being off, but my brain is REALLY not back to normal. I'm sick of Law and Order reruns, but there are afternoons that that's the only thing my brain has capacity for. I've watched two bad vampire movies this week, am caught up on my RuPaul's Drag Race, Vikings and Game of Thrones. Lenny Brisco is my go-to for mental check-out.
Being at home: Mom and Dad left Friday, and drove straight through on Saturday. They were with me nine days, which is the longest I've been with them since I was 18, and was home for a trimester because I had mono. (I remember very little of that.) We didn't fight, which was great. But I was ready for them to go, and they were ready to go back home to their routine and their stuff. By Friday, I couldn't stand them (well, Mom, really) watching me. I'd be in pain, and take something for it, and she'd watch and worry. Drove me nuts. She did a lot of cooking for us, and Dad would always walk with me...when he got bored, he started working on our deck, pulling out rotten boards and replacing them. While I really hate to put my 67 year old father (or 66 year old mother) to work, it seemed to make them feel better. They thought they'd be helping me shower and stuff, and I'd be bed ridden. We had some nice dinners together, the five of us. I'm glad they came, and I'm really glad that Monday I have the entire house to myself until Mark's home from work. Not that I'm going to be doing anything different....just haven't been alone in three weeks.
Eating: I'm eating less than 1500 calories a day still (frequently less) because food is not interesting. And I'm never hungry. If I eat an apple, I'm stuffed. I've lost 5lbs since day of surgery (that's preop, so not including in that the gallons of fluid I'm sure they pumped into me intraop). I still want fruit a lot, and veggies. I've had maybe two glasses of wine this week, but only because you can't eat Italian food without wine. I haven't wanted any more. I certainly don't mind the weight loss, but it may contribute to my fuzzy-headedness and weakness. I'm drinking a ton of water. Off Miralax or any bowel stuff, too. It's nice to have some things normal.
Incisions & bars & the cosmetic stuff: They're healing, and Mom did take me bra-shopping. Actually, she sat outside Victoria's Secret while the salesgirl refitted me. ("I'm not comfortable in that store." "Ma, it's a store for women." "I know. I don't know why.") I include this because nowhere in any of the pectus forums or videos did I find any patient talking about what happens after when it comes to this. None of us do this surgery to make cosmetic changes...there are far easier ways to fix that problem than cardiothoracic surgery. But it changes you, and I couldn't find any adult women talking about the aftermath. Anyway, they sized me to a 36 now, because the bars poke out right where the bra line rests. You'd think that a front clasp would be better, but holy shit, that was painful. Can't even tell you why, I just ripped that thing off immediately. Kind of expected the change to 36, but she bumped me up a cup size too, which was not logical''''but a B does fit a little strangely now. And a C doesn't look ridiculous. I don't look ridiculous. I mean, I'm bruised and I've got these incisions and stuff but I have a normal looking chest...the bars do poke out a bit, but it is really not bad. At some point, I could actually wear a swimming suit that doesn't look ridiculous...even a two piece. I have never work a bikini in my life. Who knows.
I'm tired now, and though I'd love to dive into something productive, I've been up and doing stuff all morning. Walking, mild chores and stuff. And even without any oxy on board, I need to turn off my brain and watch some Lenny Brisco or something.
Better day by day in some way or the other.
Continuing to get better in a frustratingly non-linear way. I have a good day, then a bad day, then a good day and I have yet to figure out what the pattern is.
Pain stuff: I'm off the long acting narcotic. I was a bit naive about that because I believed Marianne, Dr. J's nurse, who said, "Most people, once they drop either the morning or evening dose, don't even notice it." Obviously, I am doped up and my own nursing judgement is questionable. When you take away 30mg daily MS Contin, you're gonna need more short-acting oxy. So I was really disappointed that instead of needing 3 - 4 tabs of the 5mg oxys in a day, I shot up to needing six per day immediately after stopping the long acting. Which is stupid, because that's a good thing. I need 4 - 5 a day now, and so far today it's been six hours since I've had any narcotic, and I'm doing okay. There really is no such thing as pain-free. But I can walk around and do small things at 3/10, which is generally where I live. I'm scheduling the neurontin, and trying to schedule the ibuprofen, but at the amounts I'm taking, it's really beginning to tear up my stomach. And tylenol is nothing but a sugar pill that contributes to nausea...not just worthless, but actively harmful.
Breathing: My breathing feels easy, but the highest I can get on the IS still is 1000cc...today I'm doing about 800cc. I'm walking every day but yesterday, no less than 3/4 of a mile, but generally about 2 miles. On Wednesday, I actually jogged! It felt awesome! I suspect it was entirely too much too soon, but it felt great at the time. I'm coughing a little today, and I think it's because I did nothing yesterday. Later today, I'm gonna lay on my stomach and have Mark percuss my back. I had a pleural effusion when I left Arizona, and I suspect I've still got fluid in there....atelectasis if nothing else. I don't think walking alone is getting rid of it. I have my IS next to me today, and I'm gonna try working on it more. Chase, the trumpet-playing, distance-runner 16 year old, can put 3500. That kid makes me want to try harder. My heart feels great. Can't even explain that to you because I would never have said my heart felt bad before this. The heart LOVES the little bit of exercise I'm doing. I can feel it. When I push it, I'm feeling strain in my vessels on my left neck/upper chest.
Time off: I got the notice that Cigna approved short term disability until Monday, June 6. I'm glad. While I think it's very possible that I'll be off all narcotics after three weeks (which will be this coming Thursday), and I'm using one Valium maybe every other afternoon, I am not strong yet. I can get up and get showered in about the same time, and get dressed, but then I need about a 10 minute rest before I can do anything else. Mornings are difficult. They're getting better, but there is no way I could do a full workday today, or tomorrow. And it's hard to visualize me being able to do that next week, which will be one month out. My lifting restriction is 5lbs for six weeks, and I asked for the whole six weeks. I don't have to lift patients anymore, but I do have to help some patients to and from wheelchairs to exam tables, and some of our patients have legs that weigh considerably more than 5lbs. I am positive my coworkers would help me, but I'd feel safer after the six week CXR.
Concentration: Despite taking not a ton of drug anymore, I still feel out of it. When I'm in pain, I bark and feel badly about it. I have all these books I want to read...and I've finished two since being off, but my brain is REALLY not back to normal. I'm sick of Law and Order reruns, but there are afternoons that that's the only thing my brain has capacity for. I've watched two bad vampire movies this week, am caught up on my RuPaul's Drag Race, Vikings and Game of Thrones. Lenny Brisco is my go-to for mental check-out.
Being at home: Mom and Dad left Friday, and drove straight through on Saturday. They were with me nine days, which is the longest I've been with them since I was 18, and was home for a trimester because I had mono. (I remember very little of that.) We didn't fight, which was great. But I was ready for them to go, and they were ready to go back home to their routine and their stuff. By Friday, I couldn't stand them (well, Mom, really) watching me. I'd be in pain, and take something for it, and she'd watch and worry. Drove me nuts. She did a lot of cooking for us, and Dad would always walk with me...when he got bored, he started working on our deck, pulling out rotten boards and replacing them. While I really hate to put my 67 year old father (or 66 year old mother) to work, it seemed to make them feel better. They thought they'd be helping me shower and stuff, and I'd be bed ridden. We had some nice dinners together, the five of us. I'm glad they came, and I'm really glad that Monday I have the entire house to myself until Mark's home from work. Not that I'm going to be doing anything different....just haven't been alone in three weeks.
Eating: I'm eating less than 1500 calories a day still (frequently less) because food is not interesting. And I'm never hungry. If I eat an apple, I'm stuffed. I've lost 5lbs since day of surgery (that's preop, so not including in that the gallons of fluid I'm sure they pumped into me intraop). I still want fruit a lot, and veggies. I've had maybe two glasses of wine this week, but only because you can't eat Italian food without wine. I haven't wanted any more. I certainly don't mind the weight loss, but it may contribute to my fuzzy-headedness and weakness. I'm drinking a ton of water. Off Miralax or any bowel stuff, too. It's nice to have some things normal.
Incisions & bars & the cosmetic stuff: They're healing, and Mom did take me bra-shopping. Actually, she sat outside Victoria's Secret while the salesgirl refitted me. ("I'm not comfortable in that store." "Ma, it's a store for women." "I know. I don't know why.") I include this because nowhere in any of the pectus forums or videos did I find any patient talking about what happens after when it comes to this. None of us do this surgery to make cosmetic changes...there are far easier ways to fix that problem than cardiothoracic surgery. But it changes you, and I couldn't find any adult women talking about the aftermath. Anyway, they sized me to a 36 now, because the bars poke out right where the bra line rests. You'd think that a front clasp would be better, but holy shit, that was painful. Can't even tell you why, I just ripped that thing off immediately. Kind of expected the change to 36, but she bumped me up a cup size too, which was not logical''''but a B does fit a little strangely now. And a C doesn't look ridiculous. I don't look ridiculous. I mean, I'm bruised and I've got these incisions and stuff but I have a normal looking chest...the bars do poke out a bit, but it is really not bad. At some point, I could actually wear a swimming suit that doesn't look ridiculous...even a two piece. I have never work a bikini in my life. Who knows.
I'm tired now, and though I'd love to dive into something productive, I've been up and doing stuff all morning. Walking, mild chores and stuff. And even without any oxy on board, I need to turn off my brain and watch some Lenny Brisco or something.
Better day by day in some way or the other.
