Deb's Journal

Today marks 4 weeks post minimally invasive mitral valve surgery. For the past few days, I feel much more like myself. The pain at incision sites has decreased to the point that I don’t notice it as soon as Tylenol wears off. Yesterday, I ran up a flight of stairs without even thinking about it. And, I have no bodily sensation of anxiety. Apparently that feeling in my heart that I thought was anxiety was my screwed up mitral valve! Yes, I still have worried thoughts but not with the miserable bodily sensations. And, I think about all the posts on this site about people anxious about surgery— and those are real worries— but I think it all is amplified in our mind because the bodily sensation of heart problems feel similar to the bodily sensations of anxiety.

For those of you considering or facing major travel for surgery: I decided to have surgery far from home in ordering to have both a top ranked hospital and be close to family. I don’t regret the decision and learned things along the way including: 1. In advance, no medical provider would give me a definite date on when I would be ready to fly home. The most they would offer is “that seems about right.” I was discharged 3 days post surgery and stayed with family for 5 more nights— meaning I flew 9 days 2. We booked our flights directly through the airline and paid a little bit more to be able to have tickets that had no penalties for changes or cancellations. This provided peace of mind. 3. Ask for a wheelchair for navigating the airport on the flight home. Between feeling achy and less spry, I felt vulnerable to being jostled. Going through airport security in a wheelchair was a much more humane experience than the normal scene (which should be a timed Olympic event). I did not use the wheelchair to board the plane, but did pre-board with passengers needing extra time. 4. Try to fly earlier in the day. Since the surgery, pain has been worse and energy lower in the evening. Getting to our destination at midnight was hard.

When anxious, sometimes I obsess about stuff with the idea that if I have just the right thing I will feel better. On the other hand, I prefer not to accumulate stuff nor do I want to be wasteful on many levels. This leads to a lot of thinking/research for even small purchases. In fact, I found this blog while googling something about what to pack. So here is my list: 1. I have seriously bonded with my slippers which were advertised as “snow sneakers” on Amazon. The brand is Ryka. At around $30, it was a mid-range price. The grippy sneaker-like bottom gave me so much confidence during those first few hospital walks. Bonus: I wore them to pre-post appointments. 2. Men’s boxer shorts 1 size too big— something I read about on this blog. As soon as the catheter came out, the boxers went on and I experienced the simple joy of knowing my butt was covered. Nurses were easily able to look at the groin with the loose boxers. 3. Smooth Move tea. It is reliable helper for me. Get Regular tea also works. I checked with my medical team before using. 4. Maxi pads. As I had been warned, my period came several days early. And on blood thinners. 5. High cut undies. The Haines 4 pack at Target. 1 size too big. These are perfect with groin injury. What I did not need: 1. Book. I love to read but could not on painkillers. I did use my phone with headphones to listen to books, podcasts, music, meditations. 2. Knitting! What was I thinking? I had no concentration plus the yarn would have tangled in the IVs 3. Bra. Following the advice of someone else on this blog, I bought a bra without underwire. I can’t face it yet. Perhaps I will know when I am ready for work when I can not sweat putting on a bra. Ok— because I know comfort without a bra depends so much on size, I am a 36C. Currently, I am living in camisoles a size too large. What I wish I had: Very soft, very light scarf to drape around neck wounds

I am documenting my experience with pain early after surgery so that it might be helpful to others. The sources of pain in the immediate aftermath of surgery had a few locations: 1. Back pain focused around right shoulder 2. Incision sites around right breast and right armpit 3. Ribs Details: The shoulder pain is likely due to positioning during surgery. I am told it is a common complaint and goes away in a week. Aside from medications, I found Lidocaine patches and heat pad and gentle massage from family helpful. Right breast: It feels like my right breast is encased in cement. Tender. This spot definitely feels better each day. Ribs: upper part of ribs hurt when inhaling while chest drainage tube is in. Once the tubes came out that area is sore but not painful. Now about pain medication in the hospital: USE IT. I tend to overthink things and have a hard time figuring out what I want. So the question of rate my pain on a scale from 1-10 was hard. As long as chest tubes were in my pain was probably never lower than 2. As long as IVs are in, nurses can push a medication into you blood steam for fast relief. In the ICU, nursing was so close by and that I had relief at my first twinge. On the progressive care unit things took longer- the response to my reluctant use of a call button was fast but then the nurse would leave while she figured out which med and got it. Also, different nurses responded at different times and would start talking with out reading the chart. It was frustrating and I was in pain. The answer for me was to have a pump with a medication I could administer on my own. I would strongly recommend this at least until chest tubes out!!! Things I wish I knew before: - the goal is to be able to walk and move as much as possible. Use meds to keep pain down to move more. - accept that between the tubes and the surgery incisions, my body was seriously traumatized. It was ok for me to rely on all the pain medication available to me— at least in the hospital - avoid chasing the pain by letting people know how much I hurt sooner. At one point on the progressive care unit, before having a pump I could control, my pain crept from 2 to 4 before I hit the call button and was at a 6 before meds finally administered. After that it took awhile to come down—this is chasing pain. Once I could control the flow myself, I could act at the first twinge of a 3. I could also dose myself before a walk or before various procedures. Problem solved! Next post will have some details of stuff I packed that was useful.

Surgery was on Wednesday and I was out of the hospital on Saturday. I am 49, in good health except for the mitral valve issue found just 3 months ago. I do yoga and walk but not an athlete! My repair was successful with only “trivial regurgitation.” Going into my surgeon was quite confident it could be repaired rather than replaced. Day of surgery: 5:30 am arrival; 7:30 am surgery scheduled. By about noon, off bypass, around 3 in ICU with family. From that point on, either my husband or my sister stayed by my side my entire stay. When my sister asked the ICU nurse if she could stay through the night, the nurse said she couldn’t sleep there and then offfered her a blanket and ignored her sleeping in the recliner next to me. Intubation came out in the OR. In the ICU, I still had attached to my neck were 4 IVs, 1IV in each arm, 2 drainage tubes in my chest, and a catheter. Incisions around my chest and groin were bandaged. I left the ICU by about 10 am the day after surgery. Fairly soon after arriving on the progressive care unit, 1 chest tube and all the neck IVs were removed and the catheter came out later that night. The next day the 2nd chest tube came out. I was able to leave the next day! I will write another post about pain another day. I craved details and while I know everyone’s experience is different I hope some details help some people.

I just spent a full day of pre-op activities and received final approval for robotic-assisted mitral valve repair on Wednesday. So far, my experience at Mayo in Minnesota has been excellent. I know I am in this huge facility and sense thousands of other people but the patient experience attentive, focused, and obsessive care around preventing infection!

For those of you who have recovered from robotic assisted mitral valve repair surgery, I am wondering about what to expect at the incision sites, particularly in the first few weeks. Also, how is range of arm motion impacted in the first few weeks? Will I be able to pull a shirt on over my head?