Penny's Journal

Hey all, I haven't been on this site for some time. I completed rehab which was great and am back to doing my normal activities. Regular exercise is 2-4 miles per day plus 40 minutes of stationary bike. A couple months ago I started feeling dizzy during exercise but wasn't too concerned but when I had a follow up with cardiologist he put me on a 5 day heart monitor. I got the results today and it showed I was throwing PACs (premature atrial contractions). One of the guys in my rehab was having these after his bypass. I've increased the diltiazem to help my heart to regulate. I was just wondering if anyone knows if this is common after open heart? I'll be seeing my cardiologist on 4/15 to discuss this but as it's two weeks from now I'm just curious. Apparently it's not normally too concerning but because of the dizziness and when I'm laying in bed I often feel my heart quivering I wanted to know if anyone in this community has experienced it.

Today was the eval for rehab and I ended up walking 100' up and down the hallway to determine my BP, oxygen and heart rate for 6 minutes. Oxygen and heart rate were really good with a fast recovery for my HR to come down. BP was a little high for my liking especially the bottom number (dystolic?) and the nurse said it was something we would need to watch during rehab. I start Monday three days a week. She told me to make sure I didn't do my own exercise on days I come to rehab which my pup Mal won't like but we'll see how it goes. I also realized after my post yesterday that today is 8 weeks post op not 9 not that it makes that big a difference. Nurse did tell me that if my surgeon told me at my one month recheck I could lift up to 25# then at 8 weeks I can try lifting the 40 and 50# bags of chicken and bird food and see how it felt. So I unloaded the sunflower seeds and dumped them in my barrel - no problem. The pain I had been experiencing in my sternum has suddenly disappeared so I like that too. Thanks everyone for your support. And I really enjoy the updates that Adam does from seminars, etc. I continue to learn things every time.

Tomorrow - 10/18/18 - I will be 9 weeks post op. I am feeling great. No more afib and off the Amironidone since 10/10. Breathing is normal, down to one levalbuterol treatment a day and that is only because I don't want any leftovers. Still on Lasix, about 2 weeks of pills left and we'll see how things go once I'm off it. Had a post op echo and got the results last week. The peak gradient was 16 which is the best it can be based on the size of the new valve. The one I had in June the peak gradient was 71 - yikes! Very happy about that as is my cardiologist. Have been having some chest pain on the breast bone and of course I thought I had done something I wasn't supposed to but my cardiologist said no, that is the natural healing process and proceeded to explain to me how they wire the breast bone back together which is a trip to listen to him explain all of these procedures to me. I love this guy. Finally starting rehab, first evaluation is tomorrow. I had been denied the rehab because no clinical notes were attached to the authorization request and after talking to the rehab center and surgeon's nurse I happened to get my monthly call from my BCBS nurse and asked her if she could intervene since she said I definitely need the rehab. Apparently BCBS screwed up and didn't send the notes to the dr who approves the rehab for them. My nurse was livid. This was last Friday and on Monday it had all been approved. I did not know that my BCBS nurse was my advocate to make sure the insurance took care of everything but now I know if I have any problems in the future she is to be my first call. So my eval tomorrow at rehab will include a 6 minute walk on the treadmill. I should ace that since I have been walking 1 1/2 - 1 3/4 miles a day ending it all uphill since I live at the top of the hill plus 40 - 50 minutes of stationary biking for about a month. And according to my phone's fitness app I typically walk between 5-6 miles per day converting the biking into steps. I am cautiously doing more things around the house and yard - washed all the inside windows last week and trimmed a bunch of vines and flowers. Bought chicken and bird feed the other day but I don't think I should be lifting 40-50# bags of feed yet so that is a question for rehab. Still in the car for now. The one thing I have learned from all of this is that there will be good days and bad days and you just have to let your heart and body heal and eventually the good days will outshine the bad. I went into this with a positive attitude for recovery so I thought I was going to be a bad ass with this surgery and be superwoman afterwards. My heart gave me an attitude adjustment. So, give yourself a chance to heal and you will wake up one day and realize you've have more good days than bad recently and be on the mend.

Well, it was six weeks post op on Thursday, September 27th. Since last posting I have had some ups and downs but this week has been a great week. During the last couple weeks I developed more post op fluid (plural effusion technically speaking) in my left lung which created a cough that would not stop. Finally got an appointment with pulmonary and saw the same dr I had seen years ago when I had allergy related asthma and she remembered me. Got me on some meds that are working and I'm much better. My cardiologist took me off one dose of Amironidone (yeah - one pill down, about 5 more to go). On Saturday, September 22nd, I went into afib at home which was scary but I took an extra Amironidone and went to bed, woke at 2am back in sinus rhythm. Very tired the next day but felt much better on Monday. Tuesday I saw my cardiologist for a follow up and I had a bunch of questions for him which he answered fully along with a full description on what transpired during my surgery to anger my heart into misbehaving. Afib is typically temporary (90 days ish) but he will be taking me completely off the last dose of Amironidone very soon. I'll stay on blood thinner until we're both satisfied that afib will no longer be a problem but if I do happen to go into afib again he said to take an extra Cardizem rather than Amironidone. I had a post op echo on Friday and will have my follow up visit in two weeks with cardiology but the tech, who has done 99% of my echoes over the years, told me that it looked like my gradient was about 18 compared with the June echo when it was 71. Hooray. Supposed to be starting cardiac rehab very soon, waiting on insurance authorization, but I am back to riding my stationary bike 40 - 50 minutes a day along with my morning walk which was 1 mile this morning which includes the steep hill back to the house. Feels good. I've also been tracking my steps with my phone app and yesterday, between the actually walking and biking I did over 6 miles. My incision is still a little sore but has healed really well. I know I may still have some bad days but I am confident that my good days will outnumber any bad ones.

Since last I posted on 8/29 a lot has happened that kept me off the grid. Had 3 good days from 8/28-8/30. Felt great. The bottom fell out on 8/31. Very little sleep the night before and woke up to find my BP dropped to 97/40. Felt like crap. Fortunately was seeing a cardiologist for follow up that afternoon. I had been told on 8/28 by home healthcare nurse that she heard a skip in my heart beat which I hadn't heard about before. Upon seeing cardiologist and him telling me I could come off the Cardizem I asked about the skip so he gave a listen, felt pulse and said let's do an EKG. Sure enough, back in afib. He then said to come off the Valsartan HCT to bring my BP back up and stay on the Cardizem and Amironidone and scheduled a TEE and Cardioversion to shock me back in sinus rhythm. That was scheduled for 9/5. On 9/1 I coughed, not particularly hard, and my incision started bleeding again. It was a long holiday weekend. Overnight Sunday I felt my lungs getting fluid in them again so decided I would try to contact cardiology about getting a diuretic since I was off the HCT in the Valsartan. Fortunately they answered, spoke to nurse who to spoke to on call dr who prescribed Lasik. Started feeling better within 24 hours but sleep was elusive. Wednesday morning showed up for the TEE and Cardioversion and I was already back in sinus. I heard my regular cardiologist outside my room so I hollered "get in here". Needless to say we have a long history together and know each other well. He comes in and says I knew I heard your voice. So, no cardioversion, stay on the Amironidone for awhile longer to give it a chance to keep my heart in sinus along with the Cardizem. He explained everything to me about the afib, told me to relax and stop worrying. What a comfort it is to talk to someone who knows you and can answer my many questions without getting distracted or have to hurry off to another patient. Told him about my incision infection and then it popping open and how the home healthcare nurse had told I needed to keep the bandage off because the incision needed to dry and heal. He told me if it is bleeding then cover it. It's still going to heal. Love this guy. I felt like a ton of bricks had been lifted off me when I walked back out into the waiting area where my sister and neighbor had been wondering why they had not been allowed to come back to see me prior to the procedure. They had actually asked the lady at the desk to check on me and she told them the procedure was cancelled. When I walked out they said they hadn't seen that big of a smile on my face in a very long time. Today is a great day. We actually took my faithful companion Mal and drove down to our community center this morning and walked around on the flats which felt incredibly good. I fixed lunch, washed the breakfast dishes, fed my chickens some saltines and still feel great. All because I got to talk to my dr who is so reassuring to me. So, still steady and slow but feeling like I'm really on the road to recovery. And no more bleeding incision for 2 days. It does get better. See the surgeon on the 12th and hopefully he will release me to cardiac rehab. I have my doubts on driving yet though.

Today is best day yet. Got two good walks in before the heat hit, washed dishes while big sis took care of my chickens and birds and home healthcare nurse came (the best one yet!), said infected incision looks fantastic, keep bandages off and let it air heal and using my regular soap is perfectly fine. I feel fantastic. Except she also said I need to start wearing a bra to hold up the girls and support my chest. Oh well, it is still a fantastic day. 14 days post op. Love it.

Yesterday I felt better than the day before, drainage from the infected incision stopped, home healthcare nurse was fantastic, today is better than yesterday and I've almost lost all the fluid weight I gained in hospital. Had a great walk with my Mal this morning who instinctively must know he can not walk too fast and pull on the leash because he constantly looks back at to make sure I'm doing ok. It's a great feeling finally.

I'm 11 days post surgery, home finally being tended by my sister. Surgery went extremely smooth, aortic valve replacement with bovine. Out in 2 hrs, 1 hr in pulmonary till they pulled breathing tube then over to CVICU to spend night and half the next morning when I was moved to cardiac step down. Felt great Friday, up walking and doing my leg exercises. Guess I was still having gas head cause I thought it was 2am Sun morning when I went into afib but I'm told it was Saturday. Anyway I got up at 2am by myself to use bathroom and when I returned I was feeling weird. Wheezing and just not right. Nurse happened to come in and I told her and she checked monitor, said I ok and try to sleep. At 3:20am in she comes with a bag of heart rhythm meds and told me they had found on the monitor out at the desk I had gone into afib at 1:56am. Mmmm. The next day (I think) had chest x-ray and had fluid on my lungs so originally it was going to be needles in lungs to push the fluid out but instead pulmonologist said we'd try lasik and breathing treatments plus prednisone. Great for pred, now no chance at sleep. Day before and after surgery they were given me lopresser which was accounting for my headaches, nausea, etc. Saturday morning meds came in and lopresser was one and I refused to take it so I was put on cardizem, eliquis and the drip of amironidone plus the normal pill form for the afib. I went back into sinus rhythm overnight (either Sat or Sunday depending on who is telling it). Drip came out and several hours later back into it. I had just returned from walking and PT was showing me how to get out of bed at home. I sat in my chair and was resting when I had this huge wave a dizziness and headache in the back of my head. Called nurse which I had rarely done and told her about it. She said I looked fine but she'd tell the surgeon PA. Afib back.Drip back. Yes, that is a symptom. Then I had this rolling pain on my right chest going all the way around back. Called nurse, asked if that was also a symptom. No, you're fine. Surgeon came and I told him about it and he classic symptom. You're getting my drift about the nurse I had the last two days. Breathing treatments were working, I could finally reach my spirometer goals so lasik and pred gone. Did great walking at least 3 times a day along with exercises. Feeling better but no sleep! Finally requested Xanax at bed along with my own melatonin which they kept under lock and key. 😝 Sinus rhythm back and maintaining so Tue morning (which is why I think it started Sunday am not Sat am) and they were going to monitor me until discharge at 2pm. At that point I had to be my own best advocate mainly because I have this freaky body that doesn't respond well to obvious choice meds. I had taken Valsartan for years until the recall so I was changed to losartan prior to surgery which gave me headaches, nausea, etc. Before surgery I was able to get some clean Valsartan so when they started giving me my Valsartan I was happy. Tuesday morning they came in with losartan and I refused that. Come to find out the hospital pharmacy had theirs recalled and couldn't get. Too bad cause I was not taking losartan. So they said when I got home to continue with my own. Back to the drip and discharge. I was a little leery about getting the drip out at 11am and being discharged at two so we compromised on 3pm. Of course it was closer to 11:30 before the drip came out due to the most rigid and scatterbrained nurse that day. 3pm came and went and finally at about 3:45 she came in take the picc line out which they had to put in so the IV in my hand wouldn't blow out. She couldn't do it (of course) someone else came in. First nurse cut the stitch where the pacemaker wires were and told me I could take a shower when I got home and it would be fine. NOT. Kept bleeding for couple days. Anyway finally home on Tuesday evening. Slept like a log for the first time in 6 days, my best friend Mal was happy to have me home and would not leave my side for almost 48 hrs (my Plott hound), food tasted great, daughter and sister tending to me. Walking around yard feeling great Wed. Thursday I started having some leaking from my incision which was one thing that never bothered me. Fortunately home healthcare was coming that day. She was wonderful, gave me some big bandages and told me to call if it continued to drain. Friday was still draining so she was going to call surgeon and told me to call and insist on being seen. Guess what? Infection finding the weakest link to drain from. So antibiotics and antibiotics ointment. Yesterday was good. Got to walk outside my fence then around yard. Tired me but not too bad. Daughter left to fly back to NOLA and my sister and I decided she would help organize my freezer. I was just the labelling and bagging helper but I know I had handed her a couple bags that pushed the weight limit. Felt good though. Later I was in the bathroom washing my hands and had a cough, had left my pillow outside bathroom and a few minutes later I realized my bandage, shirt and floor were covered in drainage. I think I popped the imaginary stitch cause I now had a tiny hole in the incision. Called home healthcare since we couldn't get it to stop, went through 8 bandages in about 1 1/2 hrs. Home healthcare said if no fever or pain keep pressure on it and if it hasn't stopped by morning to go to ER. So I got 4 layers of bandage plus a towel and used my rice bag that I use for heat or ice on muscles to maintain a constant pressure. Slept in my recliner because my bed is harder to get out of. Sister slept on couch. Poor Mal had to sleep alone but he checked on me several times during the night. Morning came and bandage still looks good. Moral here - don't be a dumbass and think you're super woman. Feeling good but taking it easy today. Tomorrow is one day closer to getting healthy again. Oh yeah, forgot to mention I asked the surgical nurse for a picture of valve. Dr showed me on Friday. 2 leaflets severe calcium build up, the 3rd like a piece if concrete. How was I making it through all the exercise and yard work for the last few months. Perseverance I guess. Thanks for letting me ramble on.

Well, this past Thursday I took a turn for the worse again so I called the surgeon's office and we are now scheduled for 8/16. Thursday and Friday I felt like a Peterbilt truck had parked on my chest. Late yesterday afternoon the truck moved on and I'm feeling ok today but still taking it easy. Doing a little and resting then doing a little more. Needless to say I did not get on the road and drive to Durham for the concert. My daughter flies in Wednesday, brother gets here Thursday and sister next Tuesday. She will be with for the recovery at home. I am still very confident that I will fly through this whole process and in a couple months be able to do what needs doing around here. Going to a restorative yoga class tomorrow to teach me how to relax, mediate and quiet my mind.

My consult was wonderful. Dr. Williams is great, really liked him. He knew my history and wanted me to tell him what was going on. I told him about the potassium and he said immediately NOT to restart it. We discussed the two valve options in length and he told me that the bovine valves have come a long way and should last my lifetime but in the event it ever failed he could do the TAVR. When I heard that and no warfarin I was over the moon. So bovine it is. I could choose my date so since I have felt like my old self after getting off the potassium I stuck with my original date of 9/24 first surgery of the date so he's nice and fresh. At any point if I feel I need it sooner just call. He also told me no power walking, easy going so as not to over the stress my heart because that valve opening is quite small now. So I still get to go to Durham, NC this weekend to my brother's to see the LSD concert we've had in the works for months and go my daughter's from 9/13-9/18. I am psyched.

Well, I believe we've found the culprit making me so fatigued. Potassium! My level was just below the cut off on 7/26 so doctor put me on 20m of potassium to boost it. I started it on 7/28 and on 8/3 is when all of this started. My potassium had risen to 4.0 which was good but I just couldn't believe that all of sudden my aorta was causing this fatigue when I had felt pretty good and was very active. I read up on the side effects yesterday and guess what?! Side effects included all of my symptoms. So I called the cardiologist office and they told me to stop the potassium for 2 days and then restart with only 1/2 a tab. Today I feel great - just like my old self. Went for a mile walk, rode my bike for 25 minutes, did my outdoor chores and cleaned up the kitchen. Still feel great! Off for a massage and chiropractic adjustment shortly then see the surgeon this afternoon. Life is sweet today. Thanks for everyone's support.

My heart cath that I had scheduled for 8/13 was unexpectedly done on 8/3. After my regular exercise routine Friday morning of walking 2 miles and riding my bike for 30 minutes I had some breakfast and started tackling the house chores. Suddenly I had pain across my shoulder blades and pressure in my chest with shortness of breath. After realizing it wasn't just going away I called for the EMS who fortunately are stationed less than a 1/4 mile from me. I'm also fortunate that my neighbor is a nurse anesthesiologist who worked cardiac surgeries for many years and he jumped in the ambo with me to make sure the tech didn't give me nitro due to my aortic valve as he feared I had developed an dissection. Got to the hospital and after labs and chest x-ray and cardio coming they determined I was not having a heart attack and by then all pain and shortness of breathe had subsided. The cardiologist had seen my last echo and knew I was scheduled for the cath and he gave me the option of going home or doing the cath right then. I said let's do it and within the hour it was done and surprising to everyone all of my arteries are clear as crystal. I came home that afternoon and will call the surgery practice tomorrow to get my consult scheduled to get this surgery moving. Took it easy all day yesterday except for a 30 minute bike ride and walking to my neighbors' last night just to get out of the house. Felt great to shower and take the bandage off my wrist to be able to use it again and felt really good this morning. Only took a short walk - about a 1/2 mile then did my chicken chores and picked a 1/2 bushel of peppers expecting to roast and can them but was suddenly overcome by fatigue. Having rested for an hour I thought it would be a good time to update my journal. Hoping, hoping, hoping I can get a relatively quick appointment with a surgeon and get this ball rolling. I'm ready to get back to feeling like I can conquer the world again. This fatigue sucks!

I saw my cardiologist yesterday and we are moving forward with surgery. The heart cath is scheduled for August 13th. Had my labs too so now I'm just waiting. I will meet a surgeon soon after. I'm still opting towards September 24th but it depends on surgeon schedule. Hopefully the cath finds nothing so I'm keeping positive about that so I can be in and out.

I will be seeing my cardiologist on 7/26/18 to make the necessary plans for my heart valve replacement surgery which I want to have the end of September. I know that I have to get pre-authorization from the insurance before moving forward but think that I will probably get a couple of appointments scheduled Thursday for a surgeon and possibly a heart cath. Anyone have any suggestions for questions to ask? I have a long list but I would definitely love to hear more.