Cynthia's Journal

Cynthia H.  Thanks Lise. Done day 1 testing. Phyllis, yes, very efficient. Longest echo ever, but everyone is super nice.

Phyllis Petersen  They keep things moving! I hope you're going to have a very nice dinner after starvation followed by a grueling day of testing. Did you meet the surgeon today or will you meet him tomorrow?

Phyllis Petersen  I did wear my jammie bottoms once I was in stepdown, but didn't bother with the top since they just had too much to do up there. The hospital actually provided a toothbrush and toothpaste, even cleaning my teeth with a spongy thing with non-rinsing paste while I was in ICU. I was so thankful for that. I asked for a surgical bra (thank you whoever wrote about those), which made me more comfortable. I think I might have done some sudoku puzzles. My concentration wasn't great, so I really didn't do much reading. My sister brought me some salt packets (I didn't use a lot, but even a little sprinkle helped with the food).

Patricia McAllister  I packed some oversized slippers, which I ended up wearing a lot. They gave us hospital slipper socks but those never fit well. My feet swelled too so the slippers worked better. Tossed them out after the hospital just to avoid bringing home germs.

Ellen Leng  Definitely the PJ bottoms! I also used the chapstick that someone suggested. And I took my tablet which was great for binge-watching old TV shows when I was having trouble sleeping.

Briana Morgan  I brought a heat pad for sore muscles and loved having it along. Highly recommend that. My left arm ached right afterwards and elevation with the heat relieved my discomfort. Bring either iPad, Kindle, phone or electronic device to occupy your mind when you are alert enough to do so. I couldn't focus enough to read a book, but enjoyed watching short videos/ YouTube. Brought my own tea, if you like that. Also had peppermint oil, put it on a gauze and the nurses pinned it to my heart pillow for me. It helped with my nausea so much.

Phyllis Petersen  Briana and Cynthia, I had back pain and the nurse at CC gave me the stick-on heating pads until she was able to find me a machine with a warming pad. It made a big difference. They gave me a few of the stick-on ones to take with me. The wards also have a small kitchen, so you can make tea (if you have a special one) and they usually have coffee too, as well as popsicles and other snacks if you need something in your stomach at any hour for taking your meds. I did. The most important advice: ask, ask, ask! The worse they can say is no.

Phyllis Petersen  You'll need both a pillow to hold onto and a towel to put between your body and the seatbelt. You'll want to take a lot of breaks and get out and walk around a bit. And, of course, you'll want to wear compression socks (Teds--they gave them to me in the hospital) to help with circulation. Your surgery team should probably discuss a lot of this with you before you leave to go home.

Cathleen Weed  I would let the doctor know the day before you are discharged that you will have a long drive home and may need an anti-nausea med for the road. Definitely have bottled water to sip on. Phyllis is correct about the pillow for the seatbelt. Also a travel pillow for your neck and a blanket for comfort. :)

Diane Zeigler  Oh, yes. I didn't think about the neck pillow and blanket. Maybe some earphones and a good book to listen to or good music to help pass the time in the car.

Cathleen Weed  All the suggestions are great :). I've had to sit in Los Angeles traffic post heart surgery....I've learned what works lol. You might just sleep!

Carmen P  I made a seven hour drive home four days after aortic valve replacement. I used multiple pillows piled against the door, so I could elevate my upper body and lay across the back seat with the seatbelt around my waist. Probably not the safest, but it worked for me. We stopped at rest stops along the way and were able to visit the Family restrooms and avoid the small public stalls. Traveled through Gainesville and Tallahassee, Florida on Gator and Seminole Home game weekend.

Dwight Miller  I only had an hour drive home but in that time I had to make 2 pit stops, almost 3 because of the diuretic I was on. The frequency of restroom visits was high for 3 hours after taking. You may want to consider this prior to departure.

Judy Paul  Thank you for all the advice, community members. I will be driving home from Cleveland Clinic to Philly after my aortic valve replacement redo in March. Cynthia - best of luck to you and good wishes for a safe recovery. I know that all will go well for you at the CC. We chose to go there after a snafu at HUP which is only 20 minutes from my home. Now I will be seven+ hours away from family and friends. However, the staff at CC was really spot on about my redo, so the logistics will fall in place. You might want to get a few interesting ( or trashy!) books on tape to listen to during the long ride home. Let us know how you do after surgery.

Ellen Leng  Where are you having your surgery? Definitely getting in with your chosen team can take some time. It's a toss up as to whether it's more difficult to have a close or more distant date. I chose a date about 8 weeks out for work issues and to get my self and stuff in order. You also have more time to go through stages of preparation and emotional stuff. Best to you!

Cynthia H.  Ellen, I am going to the Cleveland Clinic at the recommendation of my local cardio. The downside is that I have severe symptoms, but must stay positive.

Ellen Leng  CC is a great valve surgery center, sending healing get energy your way for symptoms relief and a great outcome!

Phyllis Petersen  I had my mitral valve repaired there by Dr. Gillinov in October. I was able to stay at a cousin's in Alliance (1.25 hr. away), then flew home 13 days after surgery, changing planes at Chicago O'Hare. How far will you have to travel home?

Dwight Miller  Hi Cynthia, I am new to this forum. I am 48, been monitored for 10 years, and this is my lucky year. I will have Aortic valve replacement next Wednesday 11/02/16. I waited 7 years to hear the dreaded news from my cardiologist only to find my surgeon would not touch me. Finally both cardiologist and surgeon agree and I am ready to get this DONE.👍

Corey Sines  Hope they can make it all happen in one trip for you. Sorry you feel awful Cynthia, I hope they can get you some relief soon!

Catie B  One trip is good. All this is stressful enough without extra travel. Wishing you well with all the details, Cynthia.

Cynthia H.  Thanks for all the kind words. Good luck to you, too, Corey, with your upcoming surgery. Catie, how are you feeling these days?

Nancy Lewis  I hope they will tell you soon. The waiting is really the hard part. I think you can "think too much" while you are waiting. If you have been with the folks here and with Adam's book, a lot of your fears will dissipate. Once you are in the hospital and over the other side of the surgery, you can be surprised at how much better you will feel.

Lila Richards  I can honestly say that the waiting indeed is hard. I was an emotional roller coaster! So don't be surprised if you are ok one day and crying the next....perfectly normal! But try and think positive and peaceful thoughts. I believe that helped me through surgery and recovery. I'll pray for smooth planning and successful surgery and recovery!

Deborah Hudson  This has been an amazing precess. I had tavr for stenosis aortic valve.

You will make it. God knows where you are and what you need. Blessings to you.

Joshua Trimberger  depends on the surgeon, the hospital and your schedule. Some people are waiting months some are not. In my case I met with my surgeon on july 1st, pre op testing with a heart cath on the 7th and surgery on the 12th. In my case I had no reason to wait and wanted to get it done asap.

Sanya PHILLIPS  My diagnosis was a whirlwind. Within 2 weeks I was in for surgery but I had an aortic aneurysm to boot.

mike politowicz  2 month wait for me but they did not consider it to be an emergency. Doctors wanted it done within 6 months.

Lynne Nind  Hi Cynthia, I'm in Australia but I think a heart is a heart. I was told in March I had to have OHS but to have another Echo in 6 months to check on it's progress. My case was handed over to a Thoracic team 23rd August. I met my surgeon 2 days ago and he asked when I wanted the surgery done. I will be on the table this time next week as I said ASAP. I'm a private patient and this makes a difference in Australia. I know 2 people who were taken ill suddenly and were operated on when taken to hospital. I think your wait is like mine, meaning it is not urgent which is a good thing. The waiting is hard, isn't it? Mind you, now I know it it is only a week away I am freaking out. Have to get my head around this now. Good luck and I will keep an eye out for when you post your date.

Corey Sines  Cynthia so is the plan to replace your Aortic Valve and Repair your mitral? Or replace it as well? How do you feel right now?

Cynthia H.  The mitral and aortic valves will be replaced with mechanical ones. They may also take off some thickening from my hypertrophic obstructive cardiomyopathy heart. Pretty severe symptoms. I have pulmonary hypertention, and dependant on an oxygen tank and can't do a whole lot.

Corey Sines  Cynthia, I feel for you with the Pulmonary Hypertension, It is debilitating and makes it so you cant do alot. Couple that with an Aortic valve also not working well and heart function issues my heart goes out to you. Doesn't sound like you should be waiting around to long before surgery IMO. I am not as a bad of shape as you, saw CC Cardio's originally Apr/May for diagnosis and have my first elective surgery scheduled in July. I cancelled that surgery because I found out at last minute that the surgeon didn't think he could repair my MV and that he would be replacing it. He didn't offer / use the On-X valve, so I rescheduled with someone who would at CC.

Phyllis Petersen  Welcome to the community! Lots of information and support here. I look forward to following your journey.

Cynthia H.  Thanks for the welcoming. First surgery, as a kid, they went in to repair the aorta valve and found it was fine, so they took out some of the thickening from HCM. After 40 years of various diagnosis, especially aorta replacement, I found a cardiologist who sent me for a TEE by a cardio who made a 3D picture of my heart revealing a mitral valve only opening 15 percent and an aortic valve that also needs to be replaced. Local cardiologist said the surgeon might also want to remove more thickening as well. I had a disastrous procedure as a kid a few years after OHS. No more avoiding.