Rob's Guestbook

Rob Sparling  Frank, thanks so much for the compliments and I am truly glad to be helpful for you and any others out there! Any updates will (hopefully!?!) become more sparse since I seem to be doing really well, but sign up as a “follower” and you’ll automatically get an email when I do post.

Right now the only issue is that sodium management makes eating out a complete downer, takes away one of my favorite summer activities — smoking/grilling/eating food — and the exercise regimen is taking a “spacer” because of tendinitis in my hip. Travel adversely affects my diet and my sleep, so the heart rate and BP, while good, are not as good as they were a month ago. But all is good and you too can get here! Keep up the reading, there are others here who have inspired me, go find their journals and keep ripping through! ❤️💪

Rob Sparling  Frank, to follow, click a name from any of the posts any of us make. On the next screen that pops up you can see a link to “follow” the person. To do so, you enter your email address. The person being “followed” can see the address you provide (but nothing more) but nobody else sees those details. Then every time a journal entry is posted you get notified in your email inbox. (I don’t do Facebook, so not sure if that arrangement is any different.)

Herb Greenberg  On my cardiologist's recommendation, I sharply reduced sodium a few years ago. I never "salted" anything but went out of my way to avoid anything too salty. I went extreme for a year or so, but have since moderated. I ALWAYS make sure at a restaurant I specifically say "no added salt" and choose items that likely will be lower in sodium. There are always exceptions, especially if we're on vacation. But I still avoid it, even in the hidden things - bread, sadly, is a biggie. This is highly controversial, btw, even among cardiologists. But as they say, it can't hurt. I read labels and always go for the lowest sodium.When our kids come over for dinner they always know we're low to no sodium and add salt. However, certain dishes (especially lemon and/or other spices) can fool even me into thinking I added salt. It's crazy.

Rob Sparling  Yes! This is an area that takes a lot of work and I am open to ideas from others who have done the homework! If we share ideas, it can make it easier (hopefully). Because without help and premeditation, the first trip to a restaurant is like an interrogation and then you may cave in and never try! The servers are just not prepared. And my company cafeteria has no viable options other than salad! That means cooking at home, bringing your meal with you or finding certain options at favorite places your best options.

I’ll post a screen shot of my FitBit heart rate graph showing two instances where heart rate popped up and the only thing that changed was my diet!

We try very hard to eliminate the sodium and have found bread, butter (obviously), snack food and restaurant food to be high (or — in some cases — egregiously high) in sodium. The question isn’t “is there sodium?” but rather “how much?” And the truth is we just don’t know!

I looked for an app to help and there are options for gluten free, kosher, etc. and there are manual tables from the American Heart Association but nothing that can help in real-time while shopping. This is a missed opportunity, for sure! App developers???? You out there? Hello?

In some cases, like at Ford Field during football games, I opt for beef if I know it can be ordered without any seasoning. We found a lot of restaurants marinate chicken and have no idea what is in their marinade. We also find that restaurants cannot do blackened shrimp, mahi mahi, salmon, etc. without also loading you up with sodium. Bread and rolls at a restaurant come to the table and you suddenly have a sodium-rich roll being used as a delivery vehicle for salted butter! (And then you have another one!)

We search for bread that is organic and low in sodium. We also have snacks that feel like “cheating” but are low in sodium, are sodium free or eat fruit.

Salad dressing is another demon. For us, it is impossible not to have something, but we try to get smart options.

Here are specific ideas (in no particular order):

Garden of Eatin’ makes chip options, especially blue corn chips, that can satisfy a craving for snack food and chips and salsa. They also have taco shells that aren’t horribly loaded up. We get organic salsa that is low in sodium.

Nature’s Bakery makes fig cookies that feel like a treat. They have 45 mg of sodium per cookie — and you are gonna eat both cookies, so it is 90 mgs, let’s be real — but they feel like you are being pretty decadent (relative to eating cardboard, not relative to cheesecake!)

“Bare” makes these awesome banana and cinnamon chips. They are baked, have no sodium and taste great.

My favorite option for snacks are Kind bars. Especially the almond and coconut, dark chocolate peanut butter and the chocolate granola bar. These are all between 150-200 calories, so they are not lo-cal, but they are great options.

We get several kinds of trail mix. Unsalted, of course. Wholesome Medley is one brand we see in the stores.

Breakfast cereal loads up on sodium. Even Special K. We use oatmeal, All Bran @ 80 mg per serving, Cracklin’ Oat bran @ 65 mg per serving, and several different Kashi flavors (like Toasted Berry Crisp @ 125 mg per serving or Cinnamon Harvest @ 0 mg per serving) or organic granola. For refernce, Special K Red Berries is 225 mg per serving.

We eat a lot of fish and chicken and don’t add salt, we add pepper or other options. We cleaned out our spice rack and got rid of nearly everything!

Salad dressing takes some effort. We like Bragg’s organic apple cider vinaigrette. We just bought a new one today (haven’t tried it yet) called “Annie’s” lite raspberry vinaigrette. It has 55 mg of sodium per serving. (Hidden Valley Ranch has 245 mg per serving. Serving sizes are the same at 2 tbsp.)

We eat a lot of fruit. Bananas, apples, raspberries, blackberries and grapes for me. Bananas, oranges, grapefruit, strawberries, blueberries for Michelle.

For bread, try Dave’s Killer bread or Simply Nature “Seedtastic”. The latter has 115 mg of sodium per slice, less than half that of other more common bread choices. We use EVOO instead of butter.

I eat salad for every lunch meal when I dine in our cafeteria, I eat sushi (white rice, not sushi rice) when I go out for lunch. I have not had a sandwich since September last year (nor a softdrink).

We eat very little beef but when we do, it is lean. We eat lamb more frequently, but it is really infrequent. We eat chicken breast a lot and I eat salmon and tuna steaks quite frequently. Oh, and we eat ground turkey (93/7 Jennie-O) and to satisfy the craving for a burger!

But red wine is sodium free. Fact. 🍷

Herb Greenberg  Of course, red wine fan increase triglycerides for some of us. I used to drink it nightly; cut down to only 2 glasses on the weekend. No fun BUT... I lost a ton of weight. It just peeled right off. Thought I was sick! And it has mostly stayed off and it is nearly two years.

As for salt: My friends know what to expect when we're eating out: I'm just no fun. Rob, I even specifically say "no extra salt" on the salad because some restaurants salt salads. We go to a Mexican fast-food place here and while the burrito is loaded (and likely my sodium for the day) I ask for and get no salt on the chips. Salad dressing? I splurge on good olive oil and really good balsamic. (I work from home so I do salads daily, thus eliminating it even more.)

We go on a cruise ship - I put it in the pre-cruise requests and no problem. (Crystal is great with this.)

Through it all, tho, I still battle w/my bp, even with the cocktail of bp drugs I take. But I'm with you on sodium. It is VERY hard to be hard core for a lenghthy period of time but it is very easy to realistically reduce a ton.

Dianne A  I grew up on a low salt diet back when virtually all meals where cooked from scratch and Dad had his first heart attack before I started school. I never learned to like salty foods, but .... salt is used in a lot of food preservation, and now with the low-fat prepared foods manufacturers are adding sugar and salt to improve the taste.

When I was diagnosed on Jan 14, I told my husband we were immediately implementing a Mediterranean style diet that was also low fat and low sodium. A few days later he brought home frozen gordons fish filets! Try as I might I can't teach him to read nutrition labels. But it is really hard when you are shopping and you don't have a lot of time to pour over labels. I've started preparing a few core cooking ingredients from scratch and freezing them in portion sizes. It is really hard to find low sodium chicken broth, vegetable broth, tomato sauce, diced tomatoes are all fairly easy to cook up in the crock pot and then I store them in quart bell jars and freeze.

Mike Roskowinski  Yeah it is really hard. I have been paying attention a lot and even fresh frozen shrimp has sodium in it. One thing I don’t ever add salt to anything except when I season meat before I cook it I find different seasonings. Try to stay away from any salt ones and go straight to garlic or onion powder. I don’t eat dressings on my salads but sometimes add bacon bits which is probably bad. I figure if I can eat fruit and oatmeal for breakfast and salad and some low sodium meat for lunch then maybe can splurge for dinner. I drink lots of water and not much soda or coffee. Maybe one coffee in the morning and half a can of diet soda for lunch that I save the other have for dinner. My vice is having beer and some whiskey. Usually straight whiskey with a little ice. I guess that would be my vice. But even with alcohol I don’t usually use soda to mix. But I read something that Bud Light was now blaming Coors/Miller for using corn syrup in their beer process making. So now it is being used in making beers.

Rob Sparling  Mike, I went alcohol free for about 10 weeks. Stopped drinking two weeks prior to surgery — then there was surgery week — and didn’t start again until after my “six week” follow-up which was six weeks from the “discharge visit” that was 8 days after surgery. But do some research on red wine. There is some controversy, but it might actually be helpful. (Don’t tell me if it isn’t. Don’t.)

Rob Sparling  Herb, thank you very much! I appreciate your kind words!

I was devastated for about 72 hours after being diagnosed and then really down for the next 10 days. It took setting up my first consult in CC to get above neutral and then things started getting to positive space even though nothing had been “fixed” yet. The plan itself began the recovery. The surgery just kind of formalized it all. Weird when I say it that way, but it is true. The mental chronology is different than the physical chronology.

I bow down to those who have gone through multiple procedures. In particular those do this at a young age knowing more surgical love is on the horizon. You are my true heroes and I will need an epic amount of support when I one day go for surgery #2. And it is something I fully expect.

So Herb, come save my pitiful butt at that time and we will call it even! ❤️💪

Now about that positivity..... 🤩

Rob Sparling  Jeff, Glad to hear you had a great outcome! Dr. P. is awesome and I did follow his lead. He suggested the Ozaki Procedure and I went with it after studying it and discussing with him several times. So far, so good! Very, very pleased. The procedure is getting more attention. I am in a CC study and am aware of a new study in Switzerland that commenced in August 2018.

Jeff V.  Wow, very cool! Thanks for the info. Was your repair minimally invasive? I have not heard of this procedure and just watched an informative you tube on the surgery: https://youtu.be/0_Al5p_aoKA

Rob Sparling  I had full sternotomy. I gave Dr. P and the team full access. I try maximize the team’s ability help my situation, see what they need to see and focus on quality and craftsmanship. I also will “invest” in longer recovery (and incremental amount of pain) if that makes for a better long-term outcome. I will definitely trade one or two days of pain for the upside (?) of a longer period trouble-free? I hope so. Cosmetics? Yes, that is a difference as well. But I like my zipper. I earned it, after all.

Rob Sparling  Rosie, I don’t have any secret sauce. I wish I did. My determination to start walking as early as possible was hampered somewhat in the step down unit but since then I have been walking a lot and do something 5 or 6 days out of 7. I started out and just counted steps. Every day in the hotel after discharge I counted steps. By the time I got home, I counted minutes. I started at 3 mins, increased to 5 mins a day or two later and increased again to 8 mins a dew days after that. Then I got to 20 min sessions and the neighborhood became the constraint. Two blocks was 26 mins and three blocks was 40 mins. I varied the number of walking sessions per day, decreasing the number of them when increasing the duration of each one. After one month of walking I had logged 1000 minutes and I stoped tracking it manually and now leave the job to the Fitbit. I am now 1/3rd of the way through cardiac rehab still find walking to be the easiest exercise of them all. So doing steps/stairs and bicycle is probably where I should put my efforts. It isn’t any special technique, it is just finding a way to make the time and going at your own pace, Find your way, count your progress and get rid of any reasons NOT to go walking and it should come together. Good luck! Let us know how you’re doin’!

Rob Sparling  Cheryl and David, thank you for your kind words and prayers! I am glad to have the network of friends and “advisors” cultivated here, including yourselves obviously! Best wishes to you both in 2019 and the years ahead as we progress through our individual heart journeys! This heart stuff is not boring, I can sure say! Everyday is a new learning! ❤️💪

Rob Sparling  Thanks for reaching out, William. Dr. Svensson was one of several surgeons on my radar screen before landing with Dr. Pettersson. You are in good hands, for sure! Glad my posts were helpful! As mentioned in my journal, I would spend more time with the surgeon than I did — and earlier in the process — to make the best possible (and lowest stress) valve choice. Keep me posted! Happy New Year, you are sure to have one unlike any you’ve had before! 👍

Tracy Fallu  Hi William-
I am from Michigan as well. I agree with Rob, as I too wish I would have asked the surgeon more questions. When you “don’t know what you don’t know”, it’s hard to know what to ask. Unfortunately, I stumbled across this amazing site after the fact or I would have been much more prepared.

William Fults  Thanks for reaching out Tracy! Good advice on the questions, the notebook is filling up fast in preparation for our meeting on the tenth. I’m looking forward to having more information and a clearer path forward. I’ll keep you posted.

Adam Pick  For those of you who are not familiar with Dr. Pettersson, who was Rob's surgeon, here is some info for you...  https://www.heart-valve-surgery.com/surgeons/dr-Gosta-Pettersson-Cleveland-Ohio.php

Rob Sparling  Thank you, Adam. 👍 Appreciate you putting the link here for all to see. All the best to you and your family this holiday season!

Rob Sparling  So glad! Not easy stuff for us... Trying always to keep my head clear and logical. Writing down actually helped me too!

Rob Sparling  Cheryl, no problem with the questions. It may be more private to exchange emails and if you become a “follower” on my page I’ll see your email address and can respond that way with more info (if that helps).

I did not research the method of closure, did not think to ask about it and it was never discussed. I have wires. I had a prior surgery with a titanium hip replacement and asked about titanium then and found there are tests that can be done in advance — doing them can add more time to the process. Not sure if that is needed or if the delays are compatible with David’s situation. As I’ve posted to you before (you may not have seen it), there are advantages to going with what the surgical team does in their normal course of action. If the brackets have no down side and only upside then pursue them. But put your energy in the right place. The team, the valve, the execution of the surgery are probably more critical. Good to ask, but frankly I never worried about it.

Certain details — like what is in your neck — is probably better left to discover as the process unfolds. In my hip replacement I learned NOT to watch any videos or get into the details of the surgery. I repeated that process for OHS. I good rule might be “if it happens when I am unconscious then I didn’t need to know about it”. Do you ask your mechanic what wrench/socket he used to take your wheels off and rotate the tires? No. For the surgeons, OHS is rotating David’s tires. Lots of needles, wires and tubes. It is a package deal.

Meds? I find out today, actually. I am at my six week follow-up. Right now I am on metoprolol and baby aspirin. I hope the dosage gets dialed down and/or eliminated but I am going into the discussion not knowing and with no preconception.

How are you managing your stress? David seems (from your description) to be ready to go and had selected CC. He is mentally moving forward, yes? Is he having doubts or are you? Sorry if that is too blunt, but at some point you need to follow the advice my cardiologist gave me: “pluck a solution out of the air from right in front of you and make it work for you”.

Rita Savelis  Cheryl, your surgeon and anasthesiologist are there to answer your questions. Each patient is different. No one ever spoke to me about how my sternum would be closed (i have wires). One good thing about OHS is that I felt NO PAIN. Lots of discomfort but no pain. Your husband will probably be unaware of most of the tubes and wires as he comes out of surgery (neck, etc) but again, a surgeon or anasthesiologist can give u the whole rundown. Many patients are on betablockers for a few weeks after OHS to slow their hearts. Diuretics are also common to help u lose water weight from surgery. Wishing you the best. It is all overwhelming and you have to give up some control and trust your medical team.
But keep asking questions.

David Moore  LOL Rita, this is Cheryl .... "give up control" - I know God wants me to do the same thing in more areas than just David's surgery. He's still working on me. Thanks for the advice. We had pre-op today and they finally gave us the cardiac surgery book. Answered a lot of questions we had. Also the surgeon called today and I told him what everyone on this fabulous site has been telling me - "we trust you to do what is best for David". I think Dr. Gott was happy I was giving up "control" as well. :-) I think he will go with the wire closure after all but we still aren't sure. David is low risk and in superb health (other than that sticky aortic valve and aneurysm) and I know God has him in the palm of His hand. Dr. Gott also said he had installed two of the Inspiris valves last week in younger patients. But we also told him whatever he thinks is best, the Magna or the Inspiris, we trust him to make the right decision. (I'm just making leaps and bounds on this letting go stuff today!!)

Rob, I did follow your page. Regarding being ready, David is ready to go and that is why we didn't go to CC. He would have had to find a surgeon and then fly from Atlanta to Ohio. That would have added weeks of waiting to the process and he didn't want to do that. We are at Piedmont Atlanta - Marcus Heart Valve Clinic. Our doctor gets 4.9 of 5.0 stars on all the review sites we have found. The hospital is not on the top 50 list but from my research I think it fell out because of 30 day mortality rates - which could or could not have had anything to do with hearts - just people passing in general. In a town the size of Atlanta that could be more than in Cleveland (statistically speaking). He is managing stress OK. Seems to be worse on days we have appointments - like today. I try to fall apart when he is not around and where I can fall into the arms of Jesus for awhile. I am the happiest wife ever and he is the best husband ever (no offense) so I just want to mother him and make sure he is OK. We couldn't have any children so I think this is just my mother instinct kicking in. He finally needs me. LOL! Anyway, thanks for the advice and all of your encouragement. Regarding TMI for the patient, I did tell David that the breathing tube "might" still be in once he wakes up so don't panic and just relax as it seems to be pretty normal. I told him knowing about that in advance would stop a panic attack - and he agreed. The other things appear to be covered in the booklet in generalities so he will find out on his own when he reads it. Right now on our drive home from pre-op he is already talking about going to his company Christmas party - which will be 3-1/2 weeks post surgery. He has a plan and he will be working the plan. His recliner is ready. Our new bed will be here on Thursday so he will be able to sleep elevated. We bought button up flannel shirts to keep him from having to pull shirts over his head. We ordered a space heater to keep our super chilly bathroom warmer for his showers. Decided against a shower chair. I still have my raised potty from my hysterectomy so I will put that on sometime this week. I bought antibacterial wash clothes so he can sponge bathe when he wants while. We have filled out the paperwork for FMLA/STD at his job. I think we are ready for Monday. Only think left to do is the prayer service at church on Sunday morning where the men will anoint him and cover him with a garment of prayer and praise. Anyway... sorry of the epistle. Helps me to write it all down. Maybe I'll write a book afterwards for the families like me who need to "Let it go, let it go." :-) God bless you and continue to keep His hand upon you.

Rita Savelis  You sound ready! The Xmas party is a good goal to look forward to. Sending good thoughts your way. Take care.

Rob Sparling  Cheryl, you are a rock star! 🤩. Glad to see how buttoned up everything is for you and David. All you can do is prepare and pray! Then, after waking up, he has work to do. But it is SOOOOO doable. You will be positively surprised. ❤️💪

Rob Sparling  Thank you, Marie! Greetings from Michigan. One of the few places where Canada is directly South of the USA. Appreciate your kind words!

Rob Sparling  Judy, sorry if I posted something confusing somewhere but I am actually 21 days past my OHS at CC and am now recovering. Thanks for the encouragement!

Rob Sparling  Molly, thanks for sharing your details. I am no expert on insurance. I have a high deductible plan from my employer and Aetna is my carrier. My surgery with CC for the hip (2017) resulted in one single bill. So far from CC for heart valve, I have had one bill and expect two more. Each time it matches what I expected to pay based on what insurance company told me upfront. Maybe somebody “out there” has more experience with insurance coverage that can offer advice to you as to how you might make other options work given your coverage. If you have the time.... I know from personal experience at Cleveland Clinic they put patients most in need at the front of the line. So if you can find a way to get the finances to work you probably will not be slowed down.

Molly Ivers  Thanks for you supportive words. Just last night I received a letter from my insurance company about a charge from the hospital and started to freak out. Eventually I spoke to a friend who had had many surgeries and she said the letter is routine. Whew. Every one just keeps telling me to move forward and get the procedure done and worry about money later.

Rob Sparling  Totally agree, Chris! The waiting room and recovery room each have their complexities! Right now feeling good, but things can always change. We are in a delicate balance over the long haul! Thanks for the support!

Rob Sparling  Catie, I went with Dr. P.’s proposal for the Ozaki procedure. I did so after consult with my cardiologist! (Michelle and I forced ourselves onto his agenda and it worked out well.). Additionally, Dr. P. answered several of my questions over the phone — including being pulled back to the office to do so.

Catie B  That is so great. I've always read that a repair is a better option, when possible, over replacing.

I'm so glad, too, that there was somehow time to confer with him and satisfy your mind and heart with good answers, between him and your cardiologist. Thanks for sharing as I was very interested in the direction you took!

Rob Sparling  Yes, I was pleased as well to get the answers. At CC, as you know, every ounce of investment you make personally they return to you with a multiplier! I can’t say enough about Dr. P. and the entire team!

Just to clarify, my aortic valve was replaced. It was too damaged to be repaired. A new valve was constructed from my own pericardium and sewn in place in lieu of a prosthetic valve (i.e., a cow remains alive).

Rob Sparling  Thank you everybody. I am no hero. Trust me.

I decided that THIS MOMENT was for me to define. I will not be afraid of me. I will not be afraid of living. I will not cower at the thought of dying too early not having tried. I will not compromise cosmetics for a lower quality outcome, I will not put down the pencil until the study time expired.

In graduate school I was (rightly) accused of being a person who “worked on things until they were done” when sometimes you have to “work on things until they are due”. This is one of those things.

Folks, my cardiologist said (and this is not a plug, but rather a reminder) “at some point you have to grab a decision from the air in front of you and make it work for you.”

I also got GOBS of help from several here (you know who you are) who showed me the way. One important point that relates: if you did your best homework you possibly could do, and assembled the best team and highest probability of success available to you in your circumstances, turn your team loose — unchain the hounds — and LET THEM DO WHAT THEY DO.

Find a “Black Ops” team of your own — or your best possible mix that you can in the time alllotted and delegate the work of saving your life to them.

Pray hard, do what they tell you to do, pay attention to your instincts and internal physical feelings and start the chapter that shows a point of inflection in your life.

If I can do what I am saying, then you guys can call me strong. I can see how to drain the putts, just not sure I have the stamina. So do keep me honest. This is now about making the valve last forever. Not possible. But what incentive scheme can I arrange for myself? I am only 50! Talking the talk is only that.

But thank you all for your kind words.

I am just being me. ❤️

Charles Hamel  You're an inspiration to me.... I'm marking my surgery date as a day to make my life better.... I'm a man of faith and that will help.... By next spring I'll be recovered and refreshed ready to succeed in all I do..

Dan Baltazor  Stephanie and I are thinking about you and your wife. Looking forward to your first post. A giant hurdle will be behind you!!