Jill's Journal

Andrea Doherty  My hubby had the same thing but they didn't notice the fluid build up until he collapsed. He's now been home 3 weeks and improving sooo much quicker. You'll get there once the fluid is gone.

Shannon Gray  I wish I could give you a hug... the same thing happened to me. And I was at CC too. Prayers that you are on the road to full recovery after this.

Jill Boroniec  Thanks everyone :) It's helpful to know it's happened to others. I still have quite a bit of fluid on my R lung and that's after draining 2L from the pleural drain and 1L from the pericardial drain and a ton of diuresis. My weight is down 12 lbs since I arrived 3 days ago AND I wasn't looking puffy or anything prior to coming in. It's crazy. The team here says that they see this happen sometimes in "young" people (I say "young" because I'm 41 LOL) - I guess some people just create a huge inflammatory response to the trauma of surgery and being on pump. It's not something I really knew of or thought of until it happened to me. Good to monitor for increasing shortness of breath and tachycardia post-op though - the smartest thing someone here said to me is that there are good days and bad days in recovery but the gradual trajectory should be upwards. My recovery was going well until it wasn't - then I knew I needed to come back in.

Cameron Peek  I am so scared of this happening and how to prevent it. Did they have you weigh every day and track if you went up 3 lbs? Were you able to do your spirometer still?

Jill Boroniec  Hi Cameron - just by knowing it's a possibility, you're ahead of the game so you can monitor for symptoms closely. Sounds like it happens to 10-40% of people without a lot of rhyme or reason. Also, I think I have it worse than a lot of people for whatever reason. They did ask me to do daily weights and I probably did them every 3rd day or so. My natural weight fluctuates 5-7 lbs so I didn't pay a huge amount of attention when I was up 5. So - don't be like me. I was still able to do my spirometer - it was a PEP device and actually I felt it helped me when I was getting increasingly short of breath. I had bought an incentive spirometer before surgery "to practice" and on that my baseline pre-surg was 2000 and, post-op best was 1250. While I wasn't getting worse when I started to get more short of breath, I wasn't improving anymore. Other people with post-pericardiotomy syndrome have fever and chest pain - but I didn't have either of those. I wish you the best and hope this doesn't happen to you - be well :)

Sheri Wright  I had bicuspid aortic valve stenosis and aneurysm repair 5.8.2020.
Keep up the positive attitude! You'll be home before you know it! God Speed.

Deena Elani  Jill, time will pass quickly from hereon. Before you know it, you will be all fixed up. And you will be asking us how to best sleep at home:) Godspeed!

Susan Lynn  That's so cool that you and Nancy had the chance to meet! Best wishes to you, both! We're cheering for you!!! ❤❤

Michael Morrison  Didn’t have “pump head” but first day/night in ICU I was on such strong stuff and of course still coming off anesthesia, so I was definitely “out of it”. At one point, I remember thinking I was in a UFO and aliens were hovering over me (my vision was blurry and all I could make out were a few blurry figures hovering over me, it was the nurses). But by day 2, I was good, and never felt any cognitive deficiency after

David Smith  I think I had it but I believe it was a combination between the pain meds and not being able to use my arms and upper body very well. It lasted a couple weeks post op. It went away on its own. No pain though. Just bluh

Jill Boroniec  Michael - At least it makes for a good story! I remember my brother texting me the second night post-op that he was ready to go and I should come get him because there were fights breaking out everywhere on the floor, so I think he probably had a similar experience haha

Jill Boroniec  Thanks everyone - that's reassuring. Some of the studies I've been reading say more than 50% experience some type of cognitive dysfunction post-op and that for 10-20% it can be more long-term which is scary.

David Smith  Yeah. Good ole fentanyl. It’s great for the first few days. Then the oxys. That’s where I had to stop. I can tell why those are extremely addictive. I’ would feel better with no pain meds after three weeks. Stuff makes me feel stupid. 😜😜

  I do remember my thinking was a bit slow but like Marie it went away in a couple of days, but I do get the brain fog in the morning on and off.

Fred Earls  As a college professor who teaches online, I found this post and the follow in responses responses very informative. This is also a concern of mine, how long will it be before I get the ability back to think clearly after surgery. In case you wonder… Yes… I will be in the middle of an online class while I am in surgery. I hope to be able to type by Friday or Saturday so I can get the required grading done by Sunday midnight.

Cheryl Mann  Jill - pumphead was my number one fear going into this. I did experience some difficultly w “order of operations” my first day - if something took multiple steps, I was not always sure what to do first (like getting out of bed or getting washed up). I just mentioned it to my caregivers(although they couldn’t probably tell) and they helped me w instructions. At home, I use a whiteboard as a visual cue to what I need to be doing (just like in the hospital). It is helping me keep on track and also a nice positive affirmation of what I have accomplished during my day. What helped me the most was avoiding the heavy pain meds because I seem to be very sensitive to them. My nerve block really helped and IV toradol was wonderful - then I supplemented w Tylenol and an ice pack. Kept my head as clear as possible. I hope you hear through everyone’s stories that pump head is not inevitable and it is manageable. You will get better. I wish you fast healing and no pump head. :)

David Smith  Jill - Do you know for sure what valve or other prosthetic device they are implanting? I wished I focused a little more on that. I didn’t see any samples of valves but wished I ask. I was just in a hurry to get it done!!

Jill Boroniec  As far as I know, it's just a dacron graft to replace the ascending aorta but that's top of the list to clarify. My AV is ok without regurg/stenosis so I think they'll leave it for now. But this is a great point - one person mentioned that nobody told him the mechanical valve "clicks" and he didn't find out until a few days post-op. Yikes!

David Smith  Yeah I didn’t think too much about the valve. I just wanted the beer can size aneurysm out of me. The valve went with it.

Marshall Rader  I didn't know the surgeon until all test were done on me !! Just like Dave , wife and I chatted for about 20 minutes and that was it !!

Marie Myers  You could ask if an aortic valve repair is a possibility for you. Someone on this board had the Ozaki Procedure.

Rose Madura  Yes, the hospital gave me one and recommended this rather than a pillow. It made me feel very secure in keeping my chest safe when I coughed, sneezed etc. It was most helpful during my bumpy ambulance rides when I had complications. I recommend it!

Jill Boroniec  Thanks Rose! I like the idea of this better than a pillow. So inspiring to see you're almost 4 years out from all of this. Nice to know there is light at the end of the tunnel. Thanks for your help!

Cameron Peek  This website has a guide for 5 tips to prepare. It mentions that you cannot sleep in the bed and need a recliner. Do I need to have a recliner?

Lynn Loudermilk  You don't "need" a recliner, it is just a bit easier than laying in bed. I use a wedge in bed and it helps a lot, I do nit think I would be able to sleep flat, that is why I think people say a recliner. I did sleep in mine a total now of 3 nights. It all depends on how the day went.

Lynn Loudermilk  At my preop they said I would be getting one and I had it there waiting for me when I woke up . It all depends on your dr.

Rose Madura  I don't recall being told not to sleep in it and I think I did. They had it for me at the hospital. I did not have to order it. You may want to check with the hospital.

Patsy Stewart  First of all...prayers for your upcoming surgery. Try not to let your mind take you on a trip and to stay as positive as you can. You might want to have an extra set of sheets. I was told to change my sheets daily until my sternum healed. I almost got spoiled. Who doesn’t like fresh sheets every day?! I found having a shower chair helpful too. Taking a shower was like work and it helped to have a place to sit down when I got too tired. Sounds like you have a lot of the other items covered. Don’t forget to pack your chapstick, a long phone charger cord and nail clippers. :)

Deena Elani  Extra long phone charger cord
Sanitizing gel
Headphones, bluetooth, or ear plugs: my roommates had medical visits up to midnight and one snored loudly,

David Smith  Hello Jill - yes you are in excellent hands. I am 7 weeks out post op. My ascending aorta was roughly 6.2 at the root and very thankful that damn thing is out of me. My wife and I arrived at the hotel February 8th. I had a full day of tests on the 9th, heart cath on the 10th, more testing and met Dr Svensson on the 11th. My surgery was on Friday the 12th. I was in CVICU until Sunday afternoon and then transferred me to my step down unit. I was released from the hospital on the 19th and traveled 3 hours south to my home. (In the backseat of course). I feel great now and back to work part time. I work as a mechanical engineer and do work from home some. I was walking on my own the Tuesday post op with my IV pole. As far as things to take...I agree with the girls above about what to take. Definitely button down shirts!

Nancy Sells  Hey! I'm having my surgery on May 12th at Cleveland Clinic as well! Maybe I'm sure its a busy place but maybe I'll see you around. :) On my list to bring: Long phone cord, ear plugs just in case, Bathrobe, large pants, button up shirt or 2, socks with grip, post surgery bra, Kindle (though I don't think i'll need it) Peppermints, essential oil roller, chapstick...eye mask and dental release form.

Jill Boroniec  Thanks everyone!! These suggestions are so helpful. My Amazon cart is growing as you all type. David - so so awesome to hear from someone who has been there/done that. Very inspiring! Nancy - What a small world! I'm going to send you a message now.

Rose Madura  Something that was most helpful for me and my neck was a travel pillow both in the hospital and at home. It is something that was suggested on this site and out of everything, that was the best. Some of the nurses called me the pillow lady.

Deena Elani  Lynn, yes, I was by myself in the ICU of course, but the step-down room was not a single, it had two beds. Sounds like you were by yourself in your step-down hospital room? I did have a lovely view of central park!!!
(That was free. :)