Cristen's Journal

This past Thursday marked 6 weeks since my complex mini-sternotomy to repair an ascending aortic aneurysm and severe unicuspid aortic valve stenosis. My follow-up appointment this past Friday with Cleveland Clinic cardiologist, Dr. Tuzcu, officially marked the very first time in 30 years that I received GREAT echocardiogram results (insert epic power ballad of Queen’s “We are the Champions”). This challenging experience has definitely been a physical, emotional, and spiritual journey. I’m incredibly fortunate for the tremendous amount of support, though I must admit that the healing process made it very difficult to stay up-to-date with my heart-valve journal and respond to an abundance of phone calls, texts, e-mails, and Facebook messages. Before continuing my story, I feel it’s necessary to pay tribute to our heart Sister, Lisa Fuller. I initially began following Lisa’s story because we shared the surgery date of December 18th, and she was so kind to reach out to me with well wishes. Like so many members of our heart-valve community, I was deeply saddened when I read her husband John’s posts regarding the complications she endured. I can’t imagine the pain and sorrow that her family is experiencing; I will continue to keep the Fullers in my thoughts and prayers. I honestly didn’t feel like journaling after Lisa’s death coupled with the physical pain that I was experiencing during Week 2 of recovery. In short, it was just awful! There were times that I felt like someone had literally stabbed a knife through my right shoulder blade piercing all the way through to my right breast. By Day 10, I gave up on the pain medication (Oxycodone and Tramadol) prescribed at discharge because I was sick of the opiate high that offered very little relief. Day 12 was the lowest of the lows and my first follow-up appointment at the Cleveland Clinic. I slept terribly the night before and could hardly pull myself out of bed in the morning due to the incredible pain ripping across my chest. As I stood in front of the mirror that morning, I remember feeling so frail and despondent as my heavily bruised arms just hung in utter pain and discomfort from my protruding shoulder blades and collarbone. I didn’t have much of an appetite following surgery, so the lack of nutrition really effected my healing during this time. I really couldn’t have made it through that day, or the following weeks without my Mom’s support paired with simple, yet informative advice from an APRN. Nutrition really does make all the difference in the healing process. I was advised to replace large meals with small snacks every hour. Honey Bunches of Oats with vanilla almond milk, grapefruit, and multiple flavors of sherbet became my new best friends. Just as I was starting to feel a little relief heading into Week 3 of recovery, I received a call from the APRN at the Cleveland Clinic regarding elevated ALT and AST liver enzymes that showed in the initial follow-up lab results. Since I didn’t have a preexisting liver disorder, I was naturally alarmed especially after reading the worst-case scenario that this could be an early sign of valve tissue failure. (Damn you, Google search!) My mom joked that I must have been feeling a lot better on Week 3's trip back to Cleveland since I had the energy to openly share my frustration and impatience with the Hepatologist. After having more blood taken than what I did prior to surgery, it was ultimately confirmed that the mild liver dysfunction was most likely due to the cardiopulmonary bypass machine and anesthesia … verse the Hepatologist’s initial cRaZy talk! On a side note, I did later apologize to the doctor for my behavior. I’m being candid about these hardships because I want to encourage other heart-valve patients that IT WILL GET BETTER! The greatest advice I received was from my amazing surgeon. Upon our initial consolation, Dr. Roselli made it very clear to expect "bad days" during the recovery process, but to trust that the next day will be better. The other bit of simple, yet informative advice he gave was to "take it slow." It's quite easy to compare our recoveries to other patients. I didn't walk out of the ICU, and I certainly didn't jump on a treadmill 4 weeks post-op. This pain and fatigue was like nothing I’d ever experienced before … and I was trained in gymnastics by a Russian! ; ) In closing, I whole-heartedly believe that returning to Ohio to seek medical care at the world-renowned Cleveland Clinic was truly the best decision I’ve made in my life. For those facing aortic valve surgery, I highly suggest watching Adam and Dr. Stewart’s Webinar “Advances in Aortic Valve & Aneurysm Treatment.” Since we only have one heart, it’s imperative to take advantage of the best healthcare available and latest technologies for treating and curing our heart disease. My next step on the road to recovery is Cardiac Rehab. I’m in awe and totally inspired by so many patients’ success stories, and I can’t wait to join that growing list!

While reflecting on this past week, it's incredible the progress I've made since last Friday in the ICU! Before being discharged from Cleveland Clinic this past Tuesday, I finally had the drive and commitment to take my first shower. The hospital of course has the best set-up for maximizing your safety (hand rail, shower seat, hand-held shower hose), so I highly recommend taking advantage of the amenities. Since I have hypotension, it was also comforting to have a nurse available to check my vitals once I was finished. Once again, I was VERY fortunate to have Michael's assistance, especially since he grew up with 3 sisters and knows how to wash long hair ; ) I was slightly anxious about being discharged 1 day ahead of schedule; however, it was nice to return to the comfort of my family's home. Though I enjoyed not being "poked" anymore, I did find the first 24 hours of pain management challenging. I considered weaning off the pain medications, but it's NOT practical and NOT worth it to suffer in pain! I've been strictly following the recommended dosage every 4 hours (even through the evening), and it has helped tremendously. Happy Holidays and I'll continue to post through recovery. Best wishes to everyone as we enter a New Year in good health!

Whew, it has been quite the journey! I'll try my best to give a quick run-through of events leading up to today. First off, my support group ROCKS = ) It's almost overwhelming at times to have so many people following my progress, but still GREATLY appreciated. My boyfriend Michael truly is such a wonderful man! I still don't know how my Mom and Michael put up with me in the ICU, but I'm sure I kept them quite entertained with some wild hallucinations from all the medication. I was in the 2nd session of surgeries on Thursday. Check-in at the Cleveland Clinic was at 10am, and I was finally taken upstairs to start IV's around 1:30pm. Sam and my Mom, brother Matthew, Michael, and I had some good laughs during that time span. Humor is always the best medicine! I grabbed the side doors while being wheeled out just to give them one last giggle (the nurse however didn't find that too funny). Prep went very quickly before being wheeled into the OR. My anesthesiologist made it a very comfortable transition. My last memory was briefly speaking with Dr. Roselli. He was in great spirits and rockin' a gold chain ... man, this guy is awesome! Haha He had a group huddle and my last words were, "GO TEAM!" I woke up in the ICU relaxed, but still with my breathing tube inserted in my throat. Nurse Jacki was fantastic and gently guided me through the removal. I admit that the breathing tube was my greatest fear because I have a bad gag reflex - it was no problem at all. It was around 1am at this time, but I wanted to see my family and let them know I was okay. After a call from the nurse, my Mom and Michael quickly returned from the hotel (Intercontinental Suites is located within walking distance). They were so happy to share the results from my surgery. Dr. Roselli met with them post-op to explain that he called an audible once accessing the valve. Instead of a bicuspid aorta, I actually had a uni-cusp leaflet that he was able to repair verse replace. He salvaged the healthy section and replaced the diseased tissue with a portion of porcine material that my stem cells may actually replace. This ultimately means that I may never require another surgery for my new bicuspid valve - pretty phenomenal! I couldn't process any of this information at the time. This is when my crazy stories began. There were ants on the ceiling, my family's black lab came marching through the room, I pondered how my pudding cup was manufactured, and I had these vivid entrepreneurial ventures that made perfect sense. I slept in 5-10 minute segments my entire time in the ICU and consumed little food. I was very fortunate to have my own private corner room during those 2 days. I wanted my family there, but I was too medicated to properly communicate when they visited. I couldn't even focus to read or write until I was moved to a private recovery room late Saturday afternoon. Prior to leaving the ICU, the drainage tube was removed from my chest, along with the jugular and artery ports. I was still heavily medicated and felt little discomfort. My pacing wires were removed Sunday. Though I still struggle with the pain radiating from my very small 3 inch incision site and muscular tension across chest/neck/shoulders, I feel comfortable standing and walking. My head feels very heavy, but I'm sure a lot has to do with the effects of pain medication and lack of nutrition. I had my first follow-up echo and CT Scan with contrast today - everything is progressing nicely. My blood pressure is relatively back to "my normal" (98/55) and I may get to go home tomorrow. I still haven't had a BM, but getting ready to drink some prune juice before progressing to other tactics. In closing, I can't speak more highly of the Cleveland Clinic and their medical staff. I wouldn't want to be anywhere else! Happy Holidays and will update again soon . I left a lot of details out, so please feel free to ask me any questions that you may have concerning recovery. Reading other patient's stories and Adam's book was invaluable in my preparation for this procedure.

To all my Friends and Family - The day has finally arrived! I'm glad I waited to post until this morning because I'm truly in high spirits. I'll be heading over to the Cleveland Clinic at 10am for check-in. I'm appropriately dressed in my beloved University of Cincinnati attire and ready to do battle - it will be a "great day in Bearcat history!" ; ) I can't thank you all enough for your support during this time. Sending all my Love! XoXo Cristen