Deb's Journal

Can't believe 7 months ago I was getting out of surgery. Feeling pretty good physically. Still trying to get to the gym a few times a week to get on a treadmill. Need to work on upper body work now....had to play crash cymbals twice this week and boy, those pectoral muscles are really letting me know they aren't happy. Haven't gotten back to the things I used to do prior to surgery... Working at the vet isn't possible yet since I have trouble picking up items (the shoulder acted up again post-surgery because of disuse and my incision just doesn't feel that great when trying to pick up squirming animals that are more than 18 pounds. Tried to go back to orchestra but the stress of being pulled back into a section leader role was just too much. I was already doubting my playing ability - since I hadn't played in almost a year - and the anxiety and aggravation brought on by the responsibilities of being a section leader previously were too much (even though I tried to step down from that role)...so the only option I felt I had in order to NOT hate performing again was to completely step away. I assisted the section by copying music, finding additional players, getting rental instruments, etc. - but that was all I could manage to do. Am I happy about that? Not really..... but I would hate to end up despising something that brought me great satisfaction in the past. Maybe I can return to my role next season. Work is work....not much I can say about that. Stressful, yes. Again, not much I can do about that aside from trying to not get angry and irritated by the little things and not take on too much at one time. I've learned I don't want to return to the hectic life I had before. I miss doing things that used to be fun. They aren't fun right now because I'm severely depressed --- but that's something else I'm working on (and it happens every fall thru spring for me anyway - so nothing new there). I do know I want more ME time and less feeling like I'm obligated to do x, y, and z for this group or that group. And I want to spend more quality time with my family. In the end, they're the ones who will be there for me (hopefully) and I should be nurturing those relationships now. Anyway.....I didn't mean for this post to be such a downer....or so wordy. Ready for my new attitude? "It happens" and "Oh well". It will be interesting to see how the holidays progress and what things will be like in the spring. I usually perk up a bit mood-wise then....plus I miss kayaking - which is something I haven't done in quite a while because of my shoulder and then my heart surgery.... maybe this spring or summer.... Something to look forward to!

Well, today was my last day of cardiac rehab. I'm going to really miss it. I enjoyed the social aspect - and I had really good staff and patients in my class. Hard to believe it has been 12 weeks since my surgery. I'm going back to work (my full-time job - not my part-time one yet) on Thursday (8/21). Kind of nervous about that but my activity level has increased a lot over the last couple of weeks so that I've been busy most of the day due to some other family health issues - so hopefully that's prepared me for a full day at work. It will be a short week anyway....just 2 days then I can recover over the weekend. I've signed up for a gym membership locally so I can continue to walk the treadmill or ride a bike on crappy weather days and when it gets too dark in the morning/evening to go walking to be safe. My plan is to see if I can get the exercising in before I go to work - at least 3-4 days a week....then I don't have to worry so much about having to stay late at work or having something else come up. I'm not a morning person though, so we'll see.... I was out filling some birdfeeders today and realized what a difference a few weeks makes. A few weeks ago I was still having some problems with reaching and hanging the full feeders and getting the seed out of the storage containers - pain and pulling. Not so much now. Feeling a lot better, although I didn't realize it as it was happening. I'm still re-evaluating a lot of things - what to go back to doing, activities I want to start doing, what stressors I want to try to eliminate from my life if I'm able, etc. To that end I'm not returning to playing in orchestra right now....again, family issues and getting back into the swing of work and a "normal" life are my focus. I'm not going to jump right back into everything I was doing before my surgery.... I wasn't happy, I was really stressed out all the time, and I don't want to return to that life. My therapist tells me that's normal - I had a major surgery that changed my life. I kind of feel guilty that I'm not more grateful because I didn't have the big changes that a lot of people report post-surgery. My cardiologist says that's normal too.... We caught my problem before it became a big problem. I'm very lucky I have drs who believe in making repairs before the patient is compromised. I can't be happier with the outcome. I know I questioned why I had the surgery while I was recovering...but overall the whole process was a good experience. I have nothing bad to say. So I guess I am kind of grateful.

Still confused why I get so tired in the afternoon and end up falling asleep...but from what I read from others, this is typical so I'm sure it will get better. Walking every day - either on the treadmill at rehab or on my own. This morning I walked 3 miles. That's more than I've ever done in the past. All this walking is helping my weight; I've dropped about 10-15 lbs since the surgery. Hope to drop about another 20-30 but I'll take what I can get. :) Yesterday after my rehab session (in the am) I went shopping for another pair of sneakers - since my ankles are now acting up from the walking. Podiatrist gave me script for orthotics/braces but don't know if insurance will cover those so for now I'll take her suggestions for new sneakers and try that first. Then I met with 2 of my grandkids and their mom for lunch, hung out at their house for a while and played Xbox 360 with them, then visited some co-workers from my part-time job (since I had to drive right by the place to get home). Long day.....longest day I've done so far and it wiped me out. But it's all good...gotta get used being out and about and social for 6 or more hours a day. Finally got things straightened out (hopefully) with my short-term disability and FMLA stuff.... cardiologist office sent the revised papers in to the appropriate people. The plan is to wait to return to work until I finish cardiac rehab then go to work the following week for 3 days instead of a full 5 days...ease into it I guess. Between dealing with that and some other insurance/billing issues I've learned that I really need to work on my stress reduction/handling preferably before I return to work. I wasn't good at it before so I'm not expecting miracles but I really do need to get a better handle on my stress levels. Life is to short to be pissed off all the time about stupid crap. Now that I'm feeling more like myself I'm trying to work through re-evaluating my activities. I was pretty sedentary before my surgery. Now that I'm walking more, I like being outside. I miss kayaking and probably won't be doing that until maybe the fall or next spring...looking forward to and wanting to plan to do more of that in the future. I want to do some hiking but will have to see how the ankles do with just walking on pavement first before trying to scramble around on trails. I guess I'm making a bucket list of sorts - things I'd like to do that I didn't before for whatever reason and things I don't want to do anymore. Getting more activity and exercise is on that list. I feel better doing it and I don't want to get out of the habit. The hard part is going to be sticking to my guns about it when life returns back to "normal". I was pretty busy before and I'm not sure I really want to go back to that kind of schedule. I like having some down time. I like not worrying about causing disappointment by saying no to doing things for people. I worry a lot - always have...and for some stupid reason I actually care about what people think and want them to like me....which makes me sometimes (a lot of times really) overextend myself. I don't want to fall back into that old pattern. And I don't want to feel badly about the decisions that will be made to NOT fall back into that pattern. I just want to feel good for a while. Like some others, I was mostly asymptomatic before surgery so I didn't have the "Aha! I feel so much better" and was feeling kind of guilty that I wasn't more grateful for having the surgery done. I'm tired of feeling guilty for the feelings I have. It's OK to feel that way - there's nothing wrong with it. Thanks to those of you who've made the same comments in your journals. It really helped me come to terms with the way I was feeling and made me see I wasn't a bad person for feeling that way. OK....I've rambled on enough. Sorry for the digression. Basically, I'm pleased with the way I feel right now and am looking forward to continuing to feel even better in the weeks to come. Thanks for letting me rant..... :)

I cannot believe how tired and lousy I feel today. 6 weeks post-op and thought I was feeling better. I like cardiac rehab and the people I've met. I'm walking just about every day for longer periods/further distances. Trying not to feel guilty for not walking today and kind of taking it easy in the hopes that I'll feel more like myself and have more energy tomorrow. Today I'm just exhausted and feel like I have lead weights for arms and legs. While thinking about it and writing this I just realized I should maybe cut myself some slack... This is the first week where I've had something to do and some place to be every day of the week. Rehab on Mon, and Wed this week and since I wasn't comfortable driving yet Jill was dropping me off before she went to work and picking me up around lunch time (my rheab session is at 9 am). Tuesday afternoon/eve Jill took me to to get a pedicure. Drove the short distance to get my allergy shots and meet a friend for lunch on Thursday. Yesterday we had 14 people at the house for 4th of July (11 grow ups and 3 grand kids) for the entire afternoon plus I walked with the grand kids (ages 7, 5 and 3) to the playground at the nearby school. I didn't realize how much activity that was - at least social interaction-wise (I'm kind of an introvert so I recharge my batteries with quiet and solitude even though Jill points out I talk to everyone and it looks like I'm having a great time). That's a lot for me. I think I'm normally tired (maybe not exhausted but tired) after we have everyone at the house on holidays. Ok.... I'm chalking the feeling crappy to just a lot of activity and interaction this week. Tomorrow will be a better day. I'm almost sure of it.

Had my last visit with the surgeon last week. I've been cleared to drive but still don't feel comfortable enough to do it...still feeling every bump in the road, still don't feel like I can turn my head enough to check a blind spot, and the seat belt is still too uncomfortable to wear without having a pillow or pulling it away from my chest. Maybe later this week... Started cardiac rehab last Friday and had my 2nd session today. So far, so good. Overdid it this weekend --- went out looking for a new car with Jill - so we were out walking a couple of lots and actually bought a car....I forgot how long that process is. Came home on Saturday and was dog tired and wiped out. Rested on Sunday - felt guilty about not doing much but everyone keeps saying to listen to what your body is telling you - and mine was saying just rest up. Today was better....rehab in the morning, some time on the computer this am and this afternoon, cleaned off my desk... Still not feeling back to normal - but the drs all tell me to give it another couple of weeks - that most people start feeling more like themselves at about the 6 or 7 week mark. Here's hoping! Hope all my compatriots on HVJ are doing well with their surgeries and recoveries....thinking about you all.

Goofed when out walking the other day. Didn't plan my route before I left the house. Ended up not taking any water with me because most of my walks are 15 - 20 minutes and figured I'd be back to the house. Ended up getting a little turned around and having to walk almost 45 minutes (phone app said it was 1.5 miles).... I really felt crappy while I was out and was staring to get nervous that I'd have to call someone to come get me. Talk about stupid.... Sneezed this am and boy did that hurt - along with a nice "crunch". I see the dr and get an X-ray on Monday anyway to see how things are healing. Maybe all of this on top of some social stuff at the house is a bit much and that's why I'm having such a rough day today... Tired of being so uncomfortable and at times somewhat painful and having to think before I do something....Maybe I'm just tired. Waiting to have that revelation that all of this was worth having done right now - just not feeling it. I know it had to be done but just not seeing the benefit yet. My shoulder that I had surgery on earlier in the year is all tight and I wonder what kind of range of motion I'll have by the time this is all done ---- since I had just finished PT a few weeks before the heart surgery. Just having an off day - thanks for letting me vent here. Tomorrow will most likely be better....

Today is 3 weeks since my valve repair. Walking every day at least twice a day if not more for longer periods so I'm making progress there. Very uncomfortable lately... Not so much overly painful, just very uncomfortable -probably because I haven't found a comfortable bra for support yet. Lots of headaches. Hope that's going to get better with time. I've had ocular migraines before but never got too many headaches - just the occasional sinus headache. Now I get them more than once a day and almost always the same place on my head. I'll bring it up with the surgeon at my follow-up next Monday. Had my interview with cardiac rehab nurse on Monday. My first session is next Friday. Looking forward to it I think.

Almost 2 weeks post-op.... Feeling better.... just taking Tylenol for pain as needed now and that's helped the brain function a bit better. Still have problems with concentrating - reading is a chore - but I'm hoping time will help clear that up. I already can't stand sitting around at home but my two dr appts yesterday also show me I'm not quite ready for prime-time with a busy calendar just yet. Wore me out. Drs all are happy with my progress - everything healing nicely. Today I'm actually sitting at my desk and trying to clean up some email before my mailbox (home) fills up. Trying to make up a list of things to do each day - to set up a routine (which is what work helps me with) for each day --- that helps keep me more stable mentally and lets me see progress....as small as that may be. I go for my cardiac rehab interview next week - classes are all full right now but at least all the paperwork will be in place when openings start happening and I'm cleared to attend (probably another 2-3 weeks). Hope all my other surgery compatriots are doing well. I've been too tired lately to keep track of many of the posts but hopefully by the weekend will have more energy and concentration to do so. Take care all....

Well, last week at this time I was in the hospital with a bunch of tubes still in me. This week I'm home. Struggling some with remembering it's going to take a while to feel better and heal. Ladies - Christine was right - be prepared to possibly get your period again even if you just had it. One of the many things surgery and anesthesia screws with. Haven't posted anything lately because today is thr first time I've been able to concentrate long enough to string words together somewhat coherently. Been walking and eating better - although the appetite still waxes and wanes. Working on cutting back on the prescription pain killer - also a cause of my brain fog. Jill is having me put face pictures in my little log book so I can keep track of when I feel good vs bad overall and not just say I had a bad day. To everyone who has written in my guestbook...thanks for your support. Again, if I haven't answered it's not because I don't want to.... I just couldn't wrap my head around the task. Follow up appts with surgeon and cardiologist are on Tuesday. Hopefully I'll get more info about the surgery itself and the OK from the drs that everything is progressing as it should. Need a break right now. Will write more later.

Deb is being released today. She has come a long way in four short days and she has a long way to go. She is looking forward to going home but also has some trepidation about being out of the safety of the hospital.

I posted a six paragraph update yesterday that never showed up. Probably user error but... Deb is doing great! Three of the two chest tubes came out yesterday. Took out the art line and the four pacemaker wires. There have been no complications or set-backs. They figured out the best pain meds yesterday and that made all the difference. She sat in a chair for eight hours and took a short walk yesterday. Ate some pudding even though she had no appetite. Watched some TV and then actually slept for six hours! The night before she only dozed in five minute increments and then felt exhausted all day. Foley catheter was discontinued this morning and she is looking forward to oatmeal for breakfast. These are big improvements. She is using her incentive spiromitor hourly and getting better with it each time.

Deb is steadily progressing. She came off the ventilator at 4:00. She is down to just the nasal canula for her O2. She is in a good deal of pain; the meds are helping somewhat. She is eating ice chips; dry mouth is a big complaint. Deb has three chest tubes draining a lot. The nurse said two will probably come out in the morning. That might help reduce her back pain.

2:00 pm - Had a few minutes with Deb in the ICU. Lots of tubes, wires, and machines but she looks good. They kicked me out so they could give her a bath then they will let me back in while they wake her up and take her off the vent.

Deb is out of surgery and it went well. They were able to repair the valve which is good news. The surgeon said it took a little longer because it was complicated; I guess we'll get more information about that later. He also said the next 24 hours are critical. Still waiting to be called back to her room.

We got to the hospital at 5:30. They took Deb back at 7:15. Deb did very well this morning; she was calm and not overly stressed for someone about to have open heart surgery. Of course she got VERY calm after they gave her a shot in the butt of something to relax her. It worked. She was downright cheery as they wheeled her away! I'm in the cardiac ICU waiting room. Just got an update from the nurse... Surgery is going well. She is "prepped" (chest open and she is on the bypass machine) and they are just starting work on the valve. Next update will be when they are finished.

Had the rest of the pre-op stuff done on Monday. Tomorrow is the big day..... Have to be at the hospital at 5:30 am - which means we leave the house around 5 am. Still scrambling to get things done and to get packed and ready. It's already after 8:30 pm and hope to get at least most of the things on my list done so I can still take a something to get a good night's sleep but still be able to wake up at 4 am and function. Talked to my mom and brother tonight to hopefully make them feel a little more at ease about not coming to Delaware for the surgery. Doubt it helped. My wife, Jill, will probably be updating the journal tomorrow and maybe the day after -- at least until I'm coherent enough to update it myself and not write a bunch of gibberish. Hoping everything goes well - the plan is to repair the valve but if that can't be done then it will be replaced with a mechanical one. Either way I'm good and looking forward to having more energy and not being so tired all the time.

This time next week I'll be in the hospital and having surgery. Time flies - ha ha ha. I would probably feel better about everything if I didn't have so many irons in the fire right now. Not ready to go out at work; not prepared at home. Haven't been feeling so hot lately either - stomach is acting up - and I can't tell if it's stress, allergies, the bug that's been going around lately, or a combination. So - between not eating well and not sleeping well I'm really beat and not feeling like i'm ready to take on the surgery. Too much to do and too little time.... Insurance company being a stickler meant I had to go somewhere else for my pre-op bloodwork and UA and have it done early. The rest of the tests will be done on Monday morning. Then filling out and signing paperwork and consent forms on Wednesday afternoon and it's a done deal.

Saw the heart surgeon yesterday to get my questions answered. Set the date for May 22. Not real keen on it yet because of the conversation we had about whether to do the surgery while I was in a depressive episode. He wouldn't want to do the surgery if I was at either end of my mood swing....wants me to be more toward the manageable middle. While I'm not the most depressed I've ever been, I'm definitely not in the "middle" of my swing and definitely not feeling it's appropriately manageable right now. Medication will take too long to work (usually 4 weeks, never works for long and has too many side effects) and the other treatment that did work for me isn't covered by my insurance at this time (we have to appeal) and is too expensive to pay out of pocket for AND will take 1 - 2 weeks to work as well. May 22 works well in one instance because we have family that will be off for Memorial Day weekend and can take care of my mother-in-law while I'm in the hospital and when I first get home. The date isn't great for work - but I'd have to wait until October - November for that to work out and there would always be something else to deal with there. I just want to get this over with so I can start feeling better in general. So I guess I need to get moving and get stuff organized for two weeks from Thursday.....

Everything is coming along nicely. Still don't have full strength but the dr says that's normal and to keep working on the strength stuff at home. That means I can now focus on 1) getting my current depression treated (and arguing with the insurance company about covering that treatment) before the next surgery and 2) getting my heart surgery scheduled. Of course, now I get another set of opinions by other people --- so now I'm confused all over again. My psychiatrist asked if anyone had discussed minimally invasive surgery instead of open-heart surgery. My referred surgeon wants to do open-heart. My psych reminded me that Dover, DE is not necessarily the hub of innovation and at times can be a little on the back-woods side...and my therapist said the same. They both reminded me that the valve is fixed as soon as I'm off the operating table - that the long recovery is primarily due to letting the sternum heal after being split. I'm getting conflicting feedback as to whether to even have the surgery done at the local hospital. A little overwhelmed and not really in a great place mentally to start playing these games. I may be limited to who I can see or where I can go because of my insurance coverage and also the fact that my mother-in-law lives with us and staying local is a better chance that we can find someone to stay with her or Jill can run back and forth between the hospital and home to take care of her while I'm in the hospital. Logistics are a pain. Overwhelmed by stuff at work too since one of my co-workers is retiring July 1 and they are not replacing him. We've got tons of stuff to do and I'd be potentially leaving my other co-worker to do it all by herself. I'm already clinically depressed, don't sleep well, and am tired all the time. I don't even care if I have the surgery or not now ---- would rather just drop dead some days. That won't happen of course, and I know it's just the depression talking - but I really don't care and wish I could just find a hole to crawl into. Sorry for venting....it happens. I'll be better tomorrow probably. Trying to read through some of these journals from others to see how they handled things and made their decisions.

Still haven't set a date for surgery yet. Had another test (ultrasound of carotid arteries) last week. I guess that all looks good too. So now I'm just waiting for my shoulder to finish its recovery.... still in physical therapy 3x a week but getting some strength back and range of movement is almost normal. I visit the orthopedic surgeon at the end of this month again. My wife and I are trying to figure out when to have the surgery since we need to find someone to stay with her mom while I'm in the hospital and also to help out when I first get home. Between her work schedule and my work schedule (I've got a guy in my group who is retiring in July so I'm stressed about that) I just don't know when is a good time. Everyone keeps telling me there is no "good time" but really - I'm tired of trying to juggle everything and get it to fit in to everyone else's schedules with minimal impact. I'm concerned about having a severe depressive episode during all of this. I have bipolar disorder and get frequent depressive episodes. I know I'm dealing with one right now --- did pretty well through the whole shoulder surgery and holidays but kind of tanking right now. Just talked with my therapist yesterday about my concerns that my "attitude" and mood will negatively impact my recovery from heart surgery. Will be making an appointment with my p-doc to discuss addressing the depression before having the surgery. Waiting for the surgeon to call me back to answer some questions but that's been about a week....guess I'll just have to make an appt to ask the few questions I have --- even though they are probably pretty stupid questions. I've been reading some of the other blogs and journals and have found them quite helpful. Thanks to everyone who writes...