I am now 4mos post-surgery...
I attacked some blackberry bushes and ended up overdoing it. Spent the next 6 days in bed. My scar and chest were aching so it was good to rest my body. Then, I started having neurological events. I was walking with a friend and my mouth went numb followed by some loss of motor control in my right leg. This lasted for hours. I've since had a number of similar events. Also, back in June I had a thunderclap headache that was brutal. My docs sent me to the ER and the MRI showed white matter changes consistent with MS. I was able to see a neurologist within a week and he ruled out MS. However, I may have had a stroke in my medulla oblongata based on the MRI image. Because my great vessels aren't formed right (the left common carotid comes off of the brachiocephalic instead of the aortic arch), there is a higher index of suspicion that the vessels in my brain may also be different. The neurologist said that surgery on the aorta can cause vessel spasm in the brain. This can cause TIAs in people with small vessels...
I read the link that Adam sent in his newsletter about bypass machines and how they can throw microclots causing "pump head." I may be dealing with that as well... Just when I thought I was progressing well...
Barbara Wood Sorry to hear of your challenges Soggy! I guess we expects bumps right after surgery but months after, when we've been feeling well & confident...a bummer. ... Read more
Barbara Wood Sorry to hear of your challenges Soggy! I guess we expects bumps right after surgery but months after, when we've been feeling well & confident...a bummer. Several people on here have had small strokes after the fact. Hope all turns out well for you. Keep us posted please...
My scar at 2 months. It's starting to feel tight at times and is finally scab free. I have to remind myself that my scar is still healing so my insides are still healing. Patience...
Soggy Rodent Thank you :)... It's been interesting hearing people's comments about my scar like, "Are you going to get cosmetic surgery on that?" "You should get a tattoo ... Read more
Soggy Rodent Thank you :)... It's been interesting hearing people's comments about my scar like, "Are you going to get cosmetic surgery on that?" "You should get a tattoo on your chest to deflect attention away from your scar." "I don't want to see that, it looks angry." My answer tends to be that I'm gonna have it out in the open because it's a sign that I've been through some shit, hah!
Civita Fahey People can be really ignorant, I feel.. seriously, we that carry a scar have been through a lot and if we want to expose it then so be it.. why should you ... Read more
Civita Fahey People can be really ignorant, I feel.. seriously, we that carry a scar have been through a lot and if we want to expose it then so be it.. why should you hide it.. it doesn't make you less beautiful, in fact, I think it makes us more beautiful (inside and out ) as we have become stronger people.. Proudly display it Soggy, I don't hide mine.. it will eventually get lite and it won't seen much, but until then be proud!
Marie Myers I agree with Civita. I work with a nurse who has had a heart transplant 10 years ago. We always do a "virtual " Chest Bump when we see each other!
We have "Scar Pride" !!!
Laura Jacobs I cannot believe that people say things like that to you. That's terrible. I think your scar looks really good. It is also so straight and tidy. Mine is only ... Read more
Laura Jacobs I cannot believe that people say things like that to you. That's terrible. I think your scar looks really good. It is also so straight and tidy. Mine is only 3 weeks old and still scabby etc. My scar is squiggly (back and forth) and not a straight line at all and I have a big lump on the top of it about the size of a half walnut. I hope it will get straighter once the sealant wears off. My cardiologist seems to think that the bump will reduce in size but will not disappear all together. I am hoping that the bump will go away....has anyone healed completely and been left with a lump at the top of the scar?
Marie Myers My bump is much less defined at 3 months post op. My heart transplant friend has no noticeable bump at all.
Soggy Rodent When my scar was new, it looked like the bones weren't wired together so that they would lie flat. My chest looked like at old fashioned tent. That has now ... Read more
Soggy Rodent When my scar was new, it looked like the bones weren't wired together so that they would lie flat. My chest looked like at old fashioned tent. That has now flattened out. The only deformity that remains is under the skin. I can feel a lot of strange shapes under the skin that weren't there before. I'm guessing the shapes are where the bones have gaps between them when wired together and/or the wires themselves. I'm wondering if what you're describing, Laura, are the wires. I know somebody else who had wires that left a lump and he was told it would always be there. It's gone down but never went away completely.
Soggy Rodent I agree, Marie, scar pride! I just went to the gym for the first time with my scar out. I expect people to stare because it's not common to see somebody my ... Read more
Soggy Rodent I agree, Marie, scar pride! I just went to the gym for the first time with my scar out. I expect people to stare because it's not common to see somebody my age with a scar like this. I think people take your lead. If you act embarrassed, people will say awkward, weird things. If you walk with your shoulders back and chest out, with pride, your scar won't get as much attention, knuckleheads aside ;)
Soggy Rodent While visiting a friend in Oregon, where cannabis is legal, she gave me a balm to put on my scar. The ingredients were CBD (a chemical in cannabis that is non-psychoactive ... Read more
Soggy Rodent While visiting a friend in Oregon, where cannabis is legal, she gave me a balm to put on my scar. The ingredients were CBD (a chemical in cannabis that is non-psychoactive and has pain relieving and anti-inflammatory effects) and a number of other natural oils, such as avocado and coconut oil. My scar responded very well to it. It flattened out and became less inflamed. When I got home, I left the balm behind and started putting Vit E on my scar because I've heard many people attest to how wonderful it is. However, Vit E had the opposite effect for me. It made my scar angry and it became raised again. I have just procured more balm with CBD. I will keep you all posted on how well it works.
Marie Myers Can you get that balm on line? ( I am guessing probably not ). And also, yes, the wires under the skin do create a little bump. I have 2 areas that are a little ... Read more
Marie Myers Can you get that balm on line? ( I am guessing probably not ). And also, yes, the wires under the skin do create a little bump. I have 2 areas that are a little noticeable due to wires. I think they are for keeps. But like you said, if you act self conscious and awkward, others will too. .
Marie Myers The scar really does improve with time. I will take a pic of mine one of these days..
Soggy Rodent CBD creams can be found on-line. I would suspect that healthfood stores would probably carry it as well. There is also a CBD oil that is taken orally for anxiety.
Marlene Valenciana Rita I bought some vitamin e oil and use it everyday. You can hardly see the scar now it's 4 no old. Hang in there..
2 mos out...
Journal posted on July 14, 2017
I have done long distance drives most of my life, without any issues. At 6wks from surgery, I decided to take a long drive. My body did not like it. I am not a person who normally gets headaches and I got a doozy. I was struggling to get a wet top over my head and all of a sudden I could feel arteries on the back of my head start painfully throbbing and it traveled to the top of my head. The pain was so bad I was rocking myself while holding my head. I thought I was going to have a hemorrhagic stroke. I had the headache feeling for a few days. Two weeks later, I drove home and have that headache feeling again. I'm guessing my neck muscles are super tight and that's what's going on. No more long drives for a while. The masseuse and chiropractor are my next trips...
Roger Bideleux Hello, great photo, thanks. I was interested to hear of your experience driving! What a nasty experience. I am really keen to be allowed to drive again and ... Read more
Roger Bideleux Hello, great photo, thanks. I was interested to hear of your experience driving! What a nasty experience. I am really keen to be allowed to drive again and wonder if many others have experienced headaches after a long drive. I assume you were the driver and not just a passenger? Can you tell us how long the drive was, in time or miles, and were you driving on particulalry twisty roads? Did you ask your doctor if these symptoms are common? I do not want to plan any long drives too soon if this is to be expected.
Best wishes for a continuing recovery, Roger
Civita Fahey it took me a while to drive long distances too.. my doctor actually made it a restriction until 12 weeks.. Im just about 12 weeks now and its better.. long drives would exhaust me.. it will get better..
Marie Myers I was also surprised that I was a little sore and more tired than I expected to be when I started driving again. But I felt back to normal within a week or so.
Lynda Ruiz At 7 weeks,since I am not back home yet, driving has only been around town in my dad's car with me as the driver. 2 weeks ago I was a passenger for a farther ... Read more
Lynda Ruiz At 7 weeks,since I am not back home yet, driving has only been around town in my dad's car with me as the driver. 2 weeks ago I was a passenger for a farther drive,but no problems. Being anxious to be at home I will wait a couple months before driving from AZ to CA to see my daughter and get my beach time.
Soggy Rodent The first leg of my solo trip was 170mi with 4hrs of driving. I was tired but ok after that leg. Four days later, I drove 330mi with 6hrs of driving. Both legs ... Read more
Soggy Rodent The first leg of my solo trip was 170mi with 4hrs of driving. I was tired but ok after that leg. Four days later, I drove 330mi with 6hrs of driving. Both legs were mostly freeway miles. I stayed in the AC the whole time so I know it wasn't the heat that gave me the headaches. The first headache came when I was bending over, which my body doesn't like since surgery, and wrestling to take off a wet top. The headache was sudden and severe. I didn't call the doctor because the headache improved within 10min. However, I was left with the feeling of the beginning of a headache for a few days.
My drive home was 1.5wks later, 400mi, with 7hrs of driving. I've been very careful to not bend over for very long and that seems to have kept the headaches at bay, though I can feel them waiting in the wings. My thinking is that having my arms held up for long periods of time stressed my neck muscles. That, combined with not being able to bend over for very long were most likely the cause.
Laura Jacobs That sounds horrible Soggy!! I am no where near ready to drive and not anxious to start.
Soggy Rodent One week after surgery, it was a huge challenge to take a shower. 5wks post-surgery and this is my challenge. I can't wait to be able to jog again. It's been so long...
Rita Savelis Oh, gosh. Stairs still wear me out. Go for it Soggy!
Barbara Wood Those steps strike terror in my heart! Did you climb them after taking the photo?
Soggy Rodent Before... I started walking very slowly. First, holding my pillow to my chest and only around the house. Then, I walked only to my next door neighbor's driveway. ... Read more
Soggy Rodent Before... I started walking very slowly. First, holding my pillow to my chest and only around the house. Then, I walked only to my next door neighbor's driveway. Then I made it to the corner of my street. Little by little, I made it to the stairs. I rest a lot inbetween walks... You'll get there when your body is ready...
Barbara Helen Dance Hi thank you for your message, now that I am on the last week countdown, its soooooooo, very hard not to keep thinking " this time next week I will have been ... Read more
Barbara Helen Dance Hi thank you for your message, now that I am on the last week countdown, its soooooooo, very hard not to keep thinking " this time next week I will have been admitted ready for my surgery on the 4th July. But after my. Messages of support, I take a deep breath, and recover my composure, (oh .a..and of course breath out...... and untill the next time.....I'm fine...😖😞😓. I hope your recovery is going to plan, and I wish you all love and best wishes for your hearts future.xx
First post-surgery appointment
Journal posted on June 19, 2017
I had my first post-surgery appointment with my surgeon today. He said that I'm healing great and should start pushing myself with my walking. I asked him about my valve and he said that it was interesting in a weird way. It is rare for the valve to not match what is seen on the CT and echo... I was told that next week, I should start to feel my energy increase. I guess 6wks is where I'll round the corner... I was also told that my INR only has to be 1.5-2.5 so I won't have to worry as much about getting back into whitewater. Very good news!
This was my aortic "valve." All cusps were fused and it wasn't moving.
Phyllis Petersen Wow! I'm glad to see they replaced in time. Good for you fighting for your needs, especially with what they found. Good luck in your recovery!
It's been almost 5 weeks since I had my aortic valve, ascending, and transverse aorta replaced. I chose to have a mechanical valve so that I wouldn't have to be opened up again. My surgeon (Dr. Miller, Stanford) told me that at my age, 48, I would need another surgery within 5yrs if I had a biovalve placed due to calcium deposition.
I feel like I may be progressing more slowly than many others. I still get very winded easily and have to walk very slowly. My legs get sore from walking on flat ground. I got minimal exercise before surgery because I was so symptomatic. Maybe this is contributing to my healing time?
I'm wondering if I'm progressing more slowly because my valve was so bad or because I had a lot of tissue replaced. Or, should I be pushing myself harder? I would appreciate any and all information you could share :)
Marie Myers Have you seen your cardiologist since surgery? I would get their opinion on your recovery first. Also have they started you on cardiac rehab? That definitely ... Read more
Marie Myers Have you seen your cardiologist since surgery? I would get their opinion on your recovery first. Also have they started you on cardiac rehab? That definitely got my recovery going stronger. I was in pretty good shape before my surgery, because my bicuspid valve was functioning well enough for me to be playing tennis. Yours may well be a slower recovery due your symptomatic pre op time.
Barbara Wood I'm almost 4 weeks past mitral valve repair, & I feel that my progress has been slow too! Part of that is having had an unrealistic expectation of how I would ... Read more
Barbara Wood I'm almost 4 weeks past mitral valve repair, & I feel that my progress has been slow too! Part of that is having had an unrealistic expectation of how I would feel 1 month out- this in spite of many brutally honest journals I read about individuals struggles on the road to recovery- I've always seen myself as pretty infallible. And I have battled nearly constant afib for the past few weeks. I've landed back in the hospital, a very frustrating experience, while waiting for a cardioversion- not the recovery I anticipated! I am slow, sometimes breathless, a little weak in the knees & like to cling to my husband's arm when I walk- not my pre surgery tough independent self at all!
At this point I've accepted that my recovery is uniquely mine & will take place at a pace I am comfortable with- I push myself a little, I don't baby myself but I'm patient with myself- it will come when it comes. Ohs has been a humbling experience for me!
Laura Jacobs This is a very good lesson for me. Patience. Thank you.
Soggy Rodent I haven't seen my cardiologist since surgery yet. I have dreaded meeting with him because I didn't appreciate how he spoke to me at my last visit, which was ... Read more
Soggy Rodent I haven't seen my cardiologist since surgery yet. I have dreaded meeting with him because I didn't appreciate how he spoke to me at my last visit, which was before surgery. He told me that I had stable severe aortic stenosis, do I know why I was having these symptoms. He told me I shouldn't be having these symptoms. When I told him I had chest pain he told me that I looked fine while standing. His tone was snarky. He was invalidating my very real experience.
Soggy Rodent Barbara, I can't believe what you are going through. To have to go back to the hospital is awful. I had to go to the ER after being home a couple of days because ... Read more
Soggy Rodent Barbara, I can't believe what you are going through. To have to go back to the hospital is awful. I had to go to the ER after being home a couple of days because I had a pleural effusion and couldn't get any sleep. With a pleural effusion, you become short of breath when you lie down. They refused to give me oxygen so that I could get some rest. They sent me home without doing anything for me. Very frustrating! Thank you for sharing your story. It helps to hear that I'm not the only one. frustrated with the pace of progress.
Bob Fessler Soggy...from what you said, that would be my excardiologist. There must be another one who would listen to you, believe you and not be snarky with you.
Barbara Wood Soggy, thanks. I willingly went into the hospital to speed up my cardioversion date. They give priority to inpatients for the procedure & only schedule 1 outpatient ... Read more
Barbara Wood Soggy, thanks. I willingly went into the hospital to speed up my cardioversion date. They give priority to inpatients for the procedure & only schedule 1 outpatient appt./ day. Seems weird, but by checking myself in I went to top slot, so I can have my procedure Mon. rather than Fri. The hitch is I have to wait around as a patient thru the weekend. But I really think I will feel so much better, it's worth it to me:). Best of luck in your recovery- keep us posted please!
Soggy Rodent I've spoken to my cardiologist's office about switching to another doctor in the practice. The doctor I want to switch to has told me to have one more appointment ... Read more
Soggy Rodent I've spoken to my cardiologist's office about switching to another doctor in the practice. The doctor I want to switch to has told me to have one more appointment with the jerk so he doesn't feel like he's stepping on the jerk's toes. Can't wait until the switch is complete!
Rita Savelis Hello Soggy. I took a very long time to "progress" after sugery and I was told pre-surgery that it takes a very very long time to not feel tired and to get ... Read more
Rita Savelis Hello Soggy. I took a very long time to "progress" after sugery and I was told pre-surgery that it takes a very very long time to not feel tired and to get one's energy back. I was glad for that warning, and am always surprised when I hear a story about someone jumping back to normalcy so soon without having many/all of the common side effects (afib, fluid retention, etc...)
Being able to post or take photos or do anything even somewhat cheery soon after OHS was way outside of my normal.
I had 4 pleural effusions and they made me very tired. A lot of effusions will reabsorb by themselves, I had to have my 4 drained.This was over a 2 month period post surgery. I remember not wanting to lie flat because I felt I was suffocating, but other than that just exhaustion, exhaustion, exhaustion. Every day the same as the last one.
With or without pleural effusions sleeping and getting some rest is very very difficult and can be for weeks after surgery.
It's all hard.
You just have to vent about it and take one day, one moment at a time. Rest when and how you can. Take it really slow.
And comparing to others is the worst. It is common to share only the good stories.
I hear you Barbara and Soggy! I also had the habit of bouncing right back after my previous surgeries. OHS was the mother of all surgeries and it is really really hard to explain to someone what recovery is often like.
Surgery is a breeze, it's recovery that takes strengh.
You are both in my thoughts. Take care.
Marie Myers Good post, Rita... I am amazed when I see smiling OHS patient pictures 1 day post op. I was a tired, cranky, blob of jello who was not smiling...
Rita Savelis I admit to also having been in the cranky blob of jello club! Take care fellow members.
Laura Jacobs Thank you for the post. A friend of ours is telling us that "his friend" had no pain at all and was up and about in a couple of weeks. I have been thinking ... Read more
Laura Jacobs Thank you for the post. A friend of ours is telling us that "his friend" had no pain at all and was up and about in a couple of weeks. I have been thinking that I am going to sound like a baby if I am not the same. Your posts will help me shelve it all, and focus on staying positive and patient.
Matt Sheffield You're progressing, that is something to celebrate. Craig Miller is the man. I've heard so many great things about him. One of the best in the business. ... Read more
Matt Sheffield You're progressing, that is something to celebrate. Craig Miller is the man. I've heard so many great things about him. One of the best in the business. I had the same surgery as you a year ago, 6.21.16. Ended up with Pericardial Effusion which set me back a bit (another 7 days in the hospital). After that got dialed in, I was on the road to recovery. I walked three to four times a day. I would put on some music and walk. It took a awhile, but I finally got there. I'm shooting hoops, coaching baseball, waterslides, and riding four wheelers (moderately), I am on Warfarin. They replaced my aortic aneurysm with a dracon graft. One day at a time, walk, walk, and walk. You'll get there. Take care.
Matt Sheffield You're progressing, that is something to celebrate. Craig Miller is the man. I've heard so many great things about him. One of the best in the business. ... Read more
Matt Sheffield You're progressing, that is something to celebrate. Craig Miller is the man. I've heard so many great things about him. One of the best in the business. I had the same surgery as you a year ago, 6.21.16. Ended up with Pericardial Effusion which set me back a bit (another 7 days in the hospital). After that got dialed in, I was on the road to recovery. I walked three to four times a day. I would put on some music and walk. It took a awhile, but I finally got there. I'm shooting hoops, coaching baseball, waterslides, and riding four wheelers (moderately), I am on Warfarin. They replaced my aortic aneurysm with a dracon graft. One day at a time, walk, walk, and walk. You'll get there. Take care.
Soggy Rodent A pericardial effusion sounds absolutely awful!... Yes, Dr. Miller was awesome. A had a jerk for a cardiologist (I have since fired him). Had I not found Dr. ... Read more
Soggy Rodent A pericardial effusion sounds absolutely awful!... Yes, Dr. Miller was awesome. A had a jerk for a cardiologist (I have since fired him). Had I not found Dr. Miller, I think I woulda lost my mind. He's a very caring man.
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I attacked some blackberry bushes and ended up overdoing it. Spent the next 6 days in bed. My scar and chest were aching so it was good to rest my body. Then, I started having neurological events. I was walking with a friend and my mouth went numb followed by some loss of motor control in my right leg. This lasted for hours. I've since had a number of similar events. Also, back in June I had a thunderclap headache that was brutal. My docs sent me to the ER and the MRI showed white matter changes consistent with MS. I was able to see a neurologist within a week and he ruled out MS. However, I may have had a stroke in my medulla oblongata based on the MRI image. Because my great vessels aren't formed right (the left common carotid comes off of the brachiocephalic instead of the aortic arch), there is a higher index of suspicion that the vessels in my brain may also be different. The neurologist said that surgery on the aorta can cause vessel spasm in the brain. This can cause TIAs in people with small vessels...
I read the link that Adam sent in his newsletter about bypass machines and how they can throw microclots causing "pump head." I may be dealing with that as well... Just when I thought I was progressing well...