Kathy's Guestbook

I'm having robotic mitral valve repair on Thursday, and I just have to say: thank you so much for posting all you did with such great detail and frequency! Reading through your journal really helped me to know what to expect and put my mind at ease.

Hi Kathy I’m on countdown for my Robotic mitral valve repair surgery March 2nd What I would like to know is there any specific type pj’s for comfort post surgery for hospital stay or after at home? Congrats on your victories! Shainy

Hi Kathy! I also go to HHB in Plano. I had an appointment with Dr. Harrington, but only saw Dr. Schaffer. They say Dr. Harrington can be "lead" surgeon when I have surgery, but I am impressed with Dr.Schaffer. I have ascending thoracic aortic aneurysm 4.9cm. Schaffer says the risk of surgery right now is equivalent to the risk of rupture. Trying to decide to get it over or wait? Suggestions?

Hi Kathy, I have read through your journey as I am preparing for a very similar one. I too am planning to be at Baylor Heart Hospital, and the two surgeons I am looking at are Dr. Ryan and Dr. Smith. Both minimally invasive, with Dr. Smith ofcourse the Robotic expert. I have my confirming TEE scheduled for Jan 5th, with my Cardioligist(Dr. Vallabahn, Baylor Dallas) indicating my regurgitation has noticeably increased and my LV has enlarged.(even though I have no symptoms yet) . Once I have images and much better view for doctors to determine likeliehood of repair, I will meet with Dr's to decide on which minimally invasive/Dr to choose. I really appreciate all of your detailed updates and your energy/recovery are incredibly inspiring! Cheers, Don

I also had a dialated aorta starting at 4.2cm. I either had an MRI or CT scan yearly until the measurement was 4.6cm. After that I had an MRI or CT scan every 6 months. I had more MRIs than CT scans due to the radiation of the CT scan. Overall it took 5 years of monitoring for my aorta to dialate to 5.0cm which Dr. determined was the time for my surgery. I think they base the time For surgery on a person's height and weight.

Kathy they are upingvto 50 mg metroplol tartrate daily to take care of PVCs- dos you have pvcs? They kept me overnight but are releasing me now- I am very nervous

I am here in Plano now & dad did well with his TAVR on Wed. Keeping an eye on him. My first appt is 5/17. My local sister here said your name was familiar & saw you 2 have 17 "mutual friends" on FB. All volleyball related.

Dear Kathy, I am sure that your medical Team will diagnose and treat your fluttering. Having a fast heartbeat is much much better than not having a heartbeat at all. Keep faith and enjoy every minute of life.

Hey Kathy I read your note on my in my journal about you not needing to be on Coumadin after your procedure. I found out that Coumadin is necessary whenever they put a new ring on the valve to strengthen the annulus that supports the leaflets. (Kind of like putting in a new door frame when replacing closet doors) You may not have needed that done in your case which makes your recovery so much easier. It takes about 6 weeks for the tissue to grow into the ring so I'll need to be on Coumadin until that process is completed. How are you doing since being discharged?

Hey Kathy- I too am a gramma (lol) and have a (hopefully) mitral valve repair at Cleveland Clinic along with an ASD repair Based on you talking about your incisions did you have robotic surgery? Now did you drive to Cleveland or fly? Either way how was the trip home? It sounds as if you are recovering VERY fast! I miss running too.... my doc told me to actually hold off on the running until after my May surgery... I am walking tho.. I am overwhelmed and stressed!

hi Kathy!! I'm Cathy Zuber from chilly Illinois! I have been following your story . thanks for all the great info. I find it great that you can walk a mile!!! Just a few days after surgery!! I have severe mitral regurgitation, I'm waiting for the angiogram, then, I will have OHS. I can only walk about 30-50 feet without feeling short of breath and achy in my legs! keep up with the great healing. Your posts have helped me lots!

Hello Kathy, I will be thinking about you all day tomorrow and saying prayers that all goes well and that you will be soon on the way to recovery. I will soon be on a similar journey just don't have the date yet: same Doctor, same hospital, and same valve repair and method. Continue to stay calm, the waiting is almost done!

You must be getting jittery now, with your surgery tomorrow. I hope you have something fun planned to take your mind off of it. I'm sending up prayers for a successful surgery and easy recovery. See you on the other side!

Hi Kathy, I had aortic valve replacement surgery at the Plano Heart Hospital. My surgeon was Bill Ryan and was an excellent choice. My surgery was about 2 years ago and my recovery was very fast, thanks to the superb job that Dr. Ryan did, and the fantastic staff at the Plano Heart Hospital. I researched surgeons over a period of 7 years prior to my surgery and am very happy with my choice. No worries, you will do great, also, the food is really good, they have a fantastic cafeteria and will prepare anything you want, as long as it is approved by the doc.

Kathy, I am on the very similar path. Heart murmur for a long time, now aortic insufficiency and now talking with surgeons and doing some more tests. I have no symptoms, either, no smoking, not overweight, etc. I got the diagnosis in Dec. All very new but I know so many people who have been through it successfully No surgery is pain free but we are lucky to have such great cardiac care in the US. Hang in there, you're not alone!! Jeffrey Jacobs Alexandria VA

hi..i see you're headed to surgery soon. wishing you good luck. i'm in same situation as you. have not decided on surgery date yet though....chicken! have you any symptoms other than regurg. and palpitations? that is all i have...no shortness of breath or fatigue...etc.....

Dear Kathy, I want to wish you the best for your treatment for mitral regurgitation. I would like to share my experience to hopefully help. About a year ago, my family member (asymptomatic) had non-invasive mitral valve repair surgery to repair degenerative mitral valve prolapse (anterior leaflet, ruptured chordae) with severe regurgitation. We chose a hospital in the US and a Very experienced surgeon. The surgery went fine, but the severe regurgitation (primary leak at posterior leaflet but also multiple jet leaks) returned after 9 months. Re-surgery will be needed when symptoms begin, we are in watch and wait mode with the cardiologist. After the discovery of the new leak, I did a lot of reading, and this surgery is in no sense a "slam dunk". There are a lot of technical decisions and other factors that impact the success and durability of the surgery. One of the biggest issues I see in your case is making sure that your Hospital and surgeon have done a large number (volume) of your surgery technique with the robot that they plan to use on you (not a new model of the robot), since there is a large learning curve, and mistakes / accidents happen. There seems to be evidence that a rigid full ring annuloplasty has better success than the C band for the mitral valve. The choice for the sizing of the ring and the length of any needed Gore Tex chords is critical to the success of the repair. We are currently trying to gather more information about best practices (not part of the pre-surgery discussions) to be better informed in preparation for my family member's next surgery. In case you would like more information, I have been impressed with the surgeons and website for Mt. Sinai's cardiac surgery in New York; lots of good information. God bless you. Maria

Kathy, Since I read your post I felt a strong need to respond. I had my mitral valve repaired on 11/16/2016 and am now at home and doing well. I spent one night in the ICU, and was released on the 21st. I am 57, female, with a bmi of about 22 and good blood pressure. I was totally asymptomatic up to the time of the surgery. The problem was discovered about 2 years ago on a routine visit to my rheumatologist, (I have osteo-arthritis). Although I routinely go to my internist and gynecologist, she was the only doctor who took the time to use a good old-fashioned stethoscope. Immediately after listening to my heart, she checked my ankles and asked whether I had any shortness of breath. I regularly did aerobic exercise both in a gym and outdoors and had no complaints. She recommended I see a cardiologist, which I did. That cardiologist had did an echo cardiogram in the office which resulted in a diagnosis of mitral valve prolapse and severe regurgitation. He then recommended a transesophageal echo, TEE. I was told I wouldn't need any anesthesia for the TEE. However, I couldn't swallow the tube and as a result got emergency anesthesia. (It was out of network so I got a $900 bill which I fought and got eliminated.) The results confirmed the severe regurgitation but also confirmed no vegetative disease of the heart. The cardiologist recommended I get echo cardiograms every 6 months and take a very low dose of lisonopril to reduce the stress on the heart even though my blood pressure was in the healthy range. Since the doctors seemed so impressed with my murmur, I borrowed a stethoscope from a nurse friend and could hear it was quite noticeable. I had none of the typical precursors - rheumatic heart fever or drug abuse but was later told it must have been congenital. I fit the stereotypical body type - small-boned, small-chested and extremely flexible. After about 2 years of monitoring, my current cardiologist recommended a repair since my ventricle was gradually showing enlargement. I had read that if I did nothing, there was a 90% chance I would develop things such as congestive heart failure. I also read the mortality rate from this procedure was quite high. Since I love being active I eventually reconciled myself to getting the problem fixed. Since my diagnosis I did some internet digging and consulted with a couple of RN's I knew and trusted. Everything and everyone pointed toward not if but when I should have surgery. At first I felt I needed to go to one of the specialized hospitals: Cleveland Clinic, Cedars Sinai, etc. However, by the time I was ready I was on a ppo plan which meant I needed to stay in Arizona to get the cost covered. My cardiologist strongly recommended a local doctor, Dr. Gyu Gang. I found it very difficult to research doctors. Most medical websites are too general. I spoke with friends and got some referrals but decided to meet with Dr. Gang. Dr. Gang had an excellent resume, was reassuring and told me he did about 100 of these procedures a year and had about a 98% rate of repair versus replace, which was my ultimate goal. Based on all the internet information, I assumed I would get the minimally invasive procedure - which would mean faster recovery and less noticeable scars. Dr. Gang quickly informed me that in my case, I would need the full open-heart procedure since my fault appeared complicated. Normally I am a person who does a lot of research and gets more opinions. However, I'm also a surgeon's daughter and believe it's important to go with doctors who instill trust. I felt that, based on Dr. Gang's statistics, his resume and my cardiologist's recommendation, he was my best chance for my hoped for outcome. Although I was hoping for a repair, I had to be prepared and make a choice in advance for a natural or artificial valve. I chose the natural, despite its limited life span, to avoid blood thinners for the rest of my life. I was checked into the hospital on the 15th of November when I had a heart catheterization. The results were good with no blockage. It's a relatively painless procedure where they go through the groin then plug it up. I was hoping to watch but was drowsy and on my back so didn't get to see much. The next morning I went in for surgery. My surgery took about 3 hours and I was on bypass for 67 minutes. I came out of it well and my breathing tube was removed quickly. Happily, I got the repair I was hoping for. An annuloplasty ring was inserted, my torn chordae was repaired with gortex, my leaflets were trimmed to fit and the doctor removed the appendage to prevent future heart arrythmia. Since my vitals were good, I spent only one night in the ICU. The care I received at Banner Desert Hospital in Mesa, Arizona was excellent. Post Surgery For the first 2 days I was in a lot of pain despite pain meds. I've always had a sensitive back which doesn't like lying flat so I guess the operating table was the culprit. The first two nights were very difficult. The nurses helped a lot. I finally asked for an ice pack which I placed on my upper back. With that and a morphine drip I was able to sleep a few hours. Despite this, I was quickly getting up and walking - to a chair and, once I got the catheter removed by about day 3, around the floor. To combat the constipation from pain meds I took stool softeners, drank water continuously, added as much fiber as possible from the menu and used miralax, phillips milk of magnesia and a suppository before it could build up. Eventually I replaced the ice pack with a heating pad from home, which helped ease my back. The tv wasn't bad but I had downloaded a bunch of books onto a kindle so I had plenty of reading material to help pass the time. I found staying in the hospital to be mildly disorienting. Sometimes I didn't even feel like I was in Arizona! While in the hospital I had a catheter, (removed by day 3), a central line, a drain for the wound and a heart monitor. I brought a robe from home and some comfortable shoes so I could walk around the floor without feeling too self-conscious or uncomfortable. You are monitored around the clock so even if you can sleep you won't get to since they will be taking your vitals, collecting blood and checking your blood sugar about once every 2 to 3 hours. I was put on warfarin about day 3, which I am supposed to be taking for about 2 to 3 months. My goal was to get my INR rate to between 2 and 3. I reached this quickly and am maintaining it. I am still on a low dose lisonpril and have a beta blocker added. At first I was holding fluid so my doctor put me on lasix for a couple of days which quickly drained the fluids. When I was released from the hospital I had no drains. Since I've been at home I've weaned off the pain meds. I mainly have pain at night, trying to get into a comfortable position for my chest and back. Although I am walking about an hour every other day, I get very easily fatigued doing simple things like chopping vegetables, moving pots and pans, even sitting up typing on the computer. I also sometimes feel a bit wobbly and have recurring ocular migraines. It appears that my body needs a lot of energy just to heal. However, my doctor said I could actually drive after 2 weeks, off pain meds and I can shower, walk up stairs and take long walks. My scar is healing quite well. At first there was a lot of swelling but this has diminished. The scar is about 7 inches long, from my clavicle to the bottom of my sternum and is quickly turning to a flesh color. The flesh is quite sensitive next to it but the sternum isn't really painful, it just feels sort of tight. Of course the hospital required me to pay my full deductible balance. I had a high deductible of $6,500 which I had put into a health savings account. I have been getting some bills in the mail but have so far avoided looking at the insurance website since I'm fearful that some bills may be out of network or have a balance due. I'll be facing it soon though so if you want an update on that let me know. My husband lost his job a couple years ago and I've been a stay at home mom and executor of my parents' estate up until about the same time. I hope to get a job after full recovery. We were on the Affordable care plan this year, with a Blue Cross Blue Shield PPO, but that option will cease to exist next year. Just another reason I'm glad I had the operation while I could still chose and afford excellent care. Good luck to you. Pam de Butler