Jim's Journal

Don Brown  My friend jim i am kind of new here but i can give you a little of what i been through in my experience. In 2011 i had a infection on my heart valve so i had it replaced with a pig bovine. Then 4 years later my doctor found graident build up and deposits on the new valve. So i went through a 2 OHS and was given a cow bovine heart valve in 2016. I asked for a mechanical valve but was told because of the tricuspid being the first valve where blood in pumped into my heart it wouldnt be a good choice. Also i saw your story is for a aortic valve and mine were the same tricuspid valve both times.. Fast forward to present.. I jist found out my valve is showing gradient build up again and decreased pressure and other issues but im hoping i wont have to have a 3rd OHS.. I dont know if any of this would help you except about these bovine valves have not been good to me.. I wish you well in your recovery and hope the best for you. God Bless. Ty

Debbie Chatzky  My surgeon recommends Des a bovine mitral valve over a mechanical. They are supposed to be coated today to avoid calcium build up. I don’t know though. I’m reading from this group that mechanical definitely lasts much longer.

Catie B  I haven't had this experience, but my heart goes out to you, Jim. I hope your insurer cooperates and that you can find out exactly what's going on. From what I've understood, things like this shouldn't happen early, but that, as with most anything else, there can be exceptions. I hope your subsequent report will be good and I hope you'll keep us posted.

Jim Whipple  Hello everyone. Wrote my cardiologist a long detailed letter of what I see going on and why I'm alarmed. Turned it over to his office staff this morning with them telling me he would be out of the office until 4/10. Not happy. Right after lunch today surprise, I get a call from him. He was actually very understanding about my concerns and agreed that this should not really be happening now and it was not normal. Of course at the same time he played the card about how everyone is different and this current state of the value could go on for years and years.
I wasn't buying into the hurry up and wait and he agreed to send me back to Cleveland Clinic to be evaluated and diagnosed. He had to admit they were the best in the world and so he is contacting insurance to refer me.
Now just have to wait to see what kind of run around they give me.
Shouldn't be to bad since I went through the same thing last year because of another concern along a similar line that my local cardiologist had about increased gradient pressure.
Got to be your own best advocate people.

Jim Whipple  Well; Cleveland Clinic scheduling office called today. Found out the first appointment I can get for evaluation is May 14th. Why so long???
I'm an established patient there it shouldn't take 6 weeks to get an echo scheduled and to see a cardiologist.
Anyone out there with advice?????

Catie B  Oh wow. That's a long ways out! Wish they could see you lots sooner. I haven't been back since flying home from there a couple weeks after surgery. The person who was the most helpful in my CC journey was the nurse practice manager (I think that's what they're called) who worked directly for my surgeon. If you have the name of that person, it might be worth a call to see if he/she could help expedite things for you. I just looked at your profile and see you had Dr. Svennsen a few weeks after Dr. Pettersen did my op. If you don't recall the name, you could call Dr. S's office and ask to speak to the nurse who assists him w/ patient scheduling and other questions.

Robert D'Aurora  Had my surgery in November 2016,had an echo before I left CC,am scheduled for another echo in July 2017 in my local area

Jim Whipple  Thanks Robert. Just wondering if this is yet another way the insurance companies are trying to save money.

Lisa Ferguson  I know what you mean, I think it's natural to want to know that you are fixed! I had an echo 2 months after surgery and since I am not fixed I am having follow up echos every 6 months. But I was told that annual echos are the norm if all is well.

pam williams  Jim I live in the UK so after care maybe different, I had my Aortic valve replaced Nov last year, I am due to have my 1st echo mid April ,I understand I also would like reassurance that all is as it should be

Steven A Husted  hi mine was 7 weeks after surgery i started cardio rehab phase 2 and then went right into phase 3 love your dogs

Catie B  I began 4.5 weeks out. Would've started a week sooner, but it took time to process paperwork etc. for the program.

Phyllis Petersen  Mine didn't get quite that low (9.8 on my follow-up). My RBC and Hematocrit were very low also. I was just told to eat lots of iron rich foods to build it back up. Fortunately, I didn't need any transfusions.

susan kotansky  My rbc was very low after surgery. One of the attendings wanted to give me a transfusion but my surgeon said I didn't need one. I think it was 7. something. I took iron for a month and all was back to normal. Being really tired is also really normal. It's a special kind of exhaustion that I never experienced before but that will pass. Give yourself TIME. It is so soon after surgery. Wish you well!

Rita Savelis  Eating iron rich foods like lentils and liver is good. Almost everyone's levels are down after surgery. And getting worn out quickly (exhausted even) is a standard side effect. Go easy on yourself and let your body heal at its pace. You've been through a lot.

Jim Whipple  Thanks, it is all just a little scary but then you all know that. Didn't feel anything before the surgery in the way of pain or shortness of breath so it is hard to feel like I do now. Yeah it is all for the best and I'm thankful that I went to the doctors and we all stayed on top of this. It will pay off in the long run and I am truly grateful for having everything I have and yes that holds true for all of you Ladies and guys. Thanks!!!!!!

Rita Savelis  I hear you Jim. You feel fine, you have surgery, and then you feel like you got hit by a truck! It's unfair, but you move forward. Give it time. You are definitely in the norm, and recovery is hard (especially those first weeks, months). Take care.

Cathleen Weed  Did you have a full sternotomy? It's a traumatic surgery and it just takes time. I wouldn't stay on prescription pain meds longer than you have to. You can switch to an approved over the counter pain med at home. That's what I did. Honestly, it takes awhile and there's not much you can do about it. It's a gradual reduction of pain. A couple more weeks and you'll be moving normally. It takes a few months for the sternum to fully heal from a sternotomy and a couple more months until you feel pre-surgery/pre-symptoms normal energy etc. You'll have great progress and great days in there so just enjoy those. Eventually you'll feel better than ever! My best advice is to get into cardiac rehab and get moving as much as possible. Walk A LOT! Push through the pain, pull your shoulders back, and stand up nice and straight. Just because it hurts doesn't mean it's hurting you. The more you move your body the better. You can be healthier and more fit than ever after this is behind you. 🌟

Steven A Husted  yes i agree walk and stand up straight as you can the more movement your body has the better and as soon as they will let you start cardio rehab phase 2 it will help alot one day at a time it does get better

Catie B  Jim, after the first 4-5 days in the hospital, I stopped the fentanyl and Tylenol worked well for me. Gradually things got better, but then my soreness really increased for 2-3 weeks. Finally it dialed down again. Everyone is different and our recoveries are not linear. Be patient with yourself...

Bob Brehm  Hey Jim, Glad you made it out ok as we had the same surgery date. I was dehospitalized on Thursday partly because I had no pain (but I was on Percocet for two days). Tubes still have very minor draining (patched with simple doubled up gauze and some transparent tape). No other bandages and scar (oops, Chest Zipper), are doing well so far. Other wise it just takes some time. Now about that missing chest hair (a guy thing).

Phyllis Petersen  I would get close to pain free and t hen some more nerves would come back on board and I'd have a little pain again. Now (I had repair on 10/13), it's just some soreness where numbness was before. It's important to treat the pain so your body can heal. You have plenty of time to get off the meds or switch to something non-narcotic. I have back issues and will take Tramadol before bed, but often wake in the middle of the night with more pain, so take 8-hour Tylenol. Mostly during the day I don't need the pain meds now.

Jim Whipple  I know, the lady shaving me went crazy. regrowth will probably be the worse part of this ordeal... LOL

Juergen Li  Jim - I also recommend considering OTC medications. I was on Tylenol on the 2nd-day post OP (maximum dose 4000 mg) and then gradually reduced the dose over the next weeks. It worked for me - maybe it can also work for you. I think Cathleen is spot on - some discomfort is part of the journey and will make you stronger.

Rita Savelis  Pain really varies a lot, so there is no norm, except your own norm.
I'm going to say your pain will ease up soon, because one needs something to look forward to.
It will ease up, and you will make it there, taking one day at a time.
Take the pain meds you need for now, as it is still very early for you and your body has been through a lot of trauma.
Do what you need to do. Others can't feel your level of pain. It's so very personal.
Discomfort is different from pain, and if I could have had a major discomfort pill I would have taken it!
Take care.

Carmen P  I had AVR on October 11, 2016. Take your pain meds on some kind of schedule for the first few weeks. I can tell you, that from my experience, it takes 20 minutes for an oxycodone 5mg to fool your brain in to thinking you are "not" in pain. Break through pain is "very painful". Kind of like someone is squeezing your heart really hard....you can't catch a breath.....the tears start to trickle. Not pleasant. I was told by one of the doctor's in the hospital that you can heal better if you are not hurting.

Having said that, I was also one of those people that had never taken an Advil without weighing the disadvantages of taking "any" drug.

I started dialing back by taken a half of the pill and tapering off during the day. I still took a whole at night to be able to sleep. Tossing and trying to turn all night was not working for me. I then tapered off at night. That is what worked for me.

Lila Richards  Everybody's different...I'm week 7 since my valve replacement and I'm faring quite well on Tylenol. I'd say I started weaning off gradually about week 5. But take them if you need them! I do still take one at bedtime if I feel like I've overdone it. Hope this helps! ❤️

Michael Bronshteyn  Jim. I am one year after surgery. The bad pain goes away in about 2 months gradually. As far as the scar goes, I still feel my scar is pulling. I am used to it and it does not prevent me from living normal life, nor it wakes me up at night. But it will be a while I think before everything settles down to the point that you don't feel it. I think I am now used to it and don't pay much attention. Hope it helps.

Phyllis Petersen  Being patient was my biggest battle too. Unfortunately, you have no choice. We all want to be instantly better, but it doesn't happen that way. I hope they get your issues worked out and you start to progress more quickly.

Lila Richards  This too will pass! I know it seems hard to believe right now, but you will get remarkably better day by day! Just remember you're on the other side now! YAY! 🤗❤️

Amy Steele  Ah, patience... I think we all have struggled with that one. Try and relax and go with the flow as much as you can. Like Lila said, each day will be better.

Jim Whipple  We all need patience and then more of that. This is such an opportunity which needs to be taken of. For everbody. So my queztion : How do we get more people? By changing the system.
There are already so many top, smart people here. I believe they are here to be of help to someone they love and care about deeply. Well heart brothers and sisters: There are so many of out.
But for this immediate point in time we need to understand our position in this situation our leverage to from a more perfect system which will improve the systems
Ok, brothers and sisters my mind is is turning to mush.
Think all about the posslbilities

Diane Zeigler  Glad your problem cleared up on its own. I hope you continue to improve and will get out of there asap.

Jim Whipple  Me too. Really didn't like the idea of cutting me open again. I feel pretty good.
I'm a lucky indivilaul. We all are.
The Doctor told my wife after the surgery that I only had one leaflet on my aortic valve. First I had heard that one.

Catie B  I'm glad it's over and that you're getting through the early days, Jim! Keep healing and getting stronger.

Jim Whipple  Going to go on the treadmill for 3 or 4 miles. Then a little piece of cheese cake from the cheese cake factory then a shower with that special soap they have me

Diane Zeigler  Good luck, Jim. I had my OHS in Cleveland at CC in late June. I had a really good experience there and I am sure you will too. The nurses were wonderful!

Mike Czaplewski  Hey Jim! Saw that you were a radio operator in the Army. I was an 05C20, radio teletype operator. Last Tuesday, 11-29-16, I was told that I need to see a heart surgeon. That is scheduled for Wednesday. I have a "severe" leaking aortic valve and my heart is shrinking. Not sure what will happen next. Blessings to you on your journey.

Jim Whipple  We have been married for 50 years so it is like we are each a half of the whole. We basically grew up together. Started to have kids when we were kids. A lot of history to date.
With room for a lot more history to be made.

Phyllis Petersen  Things will go great, but it's not a bad thing to start making sure you each know what and how the other one is doing things. Anything can happen, so being prepared is always a good idea. I say this as I realize I still haven't made a will, although I've made them for other people. Maybe it's that whole idea of jinxing ourselves, which is, of course, foolish. Make sure your wife can get into your page here. You know we love to know how everything is going. Prayers for an easy surgery and uneventful recovery!

Darlene Smith  Smart thing to do even though it must have been painful! I had to write out all the links for websites where I pay the bills and develop a spreadsheet with all the user names and passwords. My husband will be lost if I go first!! He hasn't paid the bills or balanced the checkbook in about 20 years.

Cathleen Weed  Best wishes for your surgery on Monday! You sound very prepared and I'm sure that will help you feel more relaxed going in. Will look forward to your progress reports!

Phyllis Petersen  Am I the only one who had to fast for 12 hours??? Actually, I couldn't eat after 7:30 pm until 10:30 the next morning after my CTA. I bolted down a Kashi bar before my next appointment.
CC has all this down so well. Don't worry about rushing--you just go from appointment to appointment. When the surgeon was held up in surgery and I was running late for my afternoon appointment without a chance for lunch, the surgeon told me to just stop and get something to eat and get to that appointment when I could.
Make sure to get up to the rooftop terrace. The view is great. If you time it right, you might be able to get a chair massage.
Did you also find where the cafeteria, Starbuck's, Moe's, etc. are? You don't need to go outside J Bldg. to get there.

Phyllis Petersen  I used them and still am using them. I found that even if I wasn't paying full attention, after having done them a few times, I could still get a benefit. I don't know how I would have slept some of the nights before surgery without them. Give them a try!

Ellen Leng  The reality is a bit of a kick. Keep up your mantra and use the guided imagery that CC provides. You'll do great!

Robert D'Aurora  I was pretty distracted with work and personal things leading up to my surgery. It really hit me when they carted me away and I said goodbye to my daughter. Then, when I got to the operating room, I chatted briefly with the anesthesiologist, who was quite pleasant and reassuring. It was around noon. Next thing I know, it was 8 or 9pm that night and the surgery was over. What a relief! Sorry, I digress. You are right, take 1 day at a time, and trust in your surgeon. You have a good attitude.

Phyllis Petersen  Pretty soon you'll be on the better side of surgery and doing your recovery and rehab. There's a great restaurant over in Little Italy, not far from the hospital (Etna Ristorante). My sister and I had a nice dinner the night before. I don't know about you, but that tends to help me.

Jim Whipple  after freaking out all weekend with the added stress of being told that your appointments for the pre testing and your surgery date has been canceled I got things straighten out this morning. Boy let me tell you I hate phone mail. It should be illegal and banned. Hey maybe Trump will make it against the law.
Couldn't talk to a human being until about 8:45 this morning. Just machines.
Was told a mistake just before lunch that a 3rd party vender helping Cleveland Clinic made a mistake and this should have never happen. DAH Really!!!
Thinking maybe this was some kind of pre testing stress test or something.

Catie B  Jim, I am so glad things were straightened out. I'm so sorry you went through such a load of extra anxiety and stress! Hope it's smooth sailing from here on!

Corey Sines  Sorry Jim! I Really hate dealing with medical administration and insurance. Keep at it and be persistent are my only advice.

Jim Whipple  thanks Corey. I won't give up. It is all too important. Just bummed I'll have to wait till Monday.

Phyllis Petersen  I had my insurance company deny coverage for the CT, but CC arranged a peer to peer review and it was approved. That was the day before surgery!

Diane Zeigler  Why do these insurance companies and doctor's offices put people through this kind of stuff? This is just not right. And I agree, Jim, that calling you on Friday and making you wait until Monday to get information is also very inconsiderate. I guess they are just doing their job, but being a little bit compassionate wouldn't hurt.

Jim Whipple  It is all insane. I got some meds to help me relax because I was getting a little anxious with the surgery approaching on the 5th. I now think my anxiety has peaked above the pre surgery levels and I will be using those meds over the next few days.

Catie B  It is great news that you're going to be able to go where you feel the most comfortable and safe to have your surgery!

Shannon Gray  Hi Jim! Great question... CC will discharge you and then want you to stay close by for about 3 days. You will then go in and meet with your surgeon's P.A or N.P. To get cleared to go home. Are you flying? If so, their concierge will be helpful in setting up your return flight. Any more questions, please ask.

Ellen Leng  Agree that you should stay in Cleveland a bit. Might want to keep those plans a little flexible as there have been some stories on this site about occasional readmission and you really want to be at the place where the surgery was done for that!

Phyllis Petersen  You will have a follow up appointment a few days after getting out of the hospital. I stayed with family an hour and a half away and clutched my heart pillow to my side while in the car. I was released on Monday, returned for following up on Friday, and had to return on Monday because of an inflammation. If you can stay closer, it would probably be easier.

Robert D'Aurora  I was discharged on a Saturday and left for home on Sunday since I did not have any complications. I have a doctor's appointment on Wednesday with my personal physician(locally). I would have stayed in Cleveland for a few more days if I had complications. I was fortunate and did not have to.

Catie B  I'm someone who had complications and ended up needing to remain in Cleveland longer than expected. Originally the plan was to be around for about three days after surgery and have one appointment with the surgeon's nurse practitioner. The on-campus hotels will flex with you whether you need more or less time there than anticipated.

Lise Bowles  Hi Jim, I had robotic surgery on Tuesday and they discharged me Friday, we stayed at the Intercontinental at CC for 2 nights after so they could check on me before going back to Florida.
Good luck, Lise

Diane Zeigler  I had heart cath and echo done by my local hospital. Then I went to CC for a second opinion. CC concurred with my local doctor. The cardiologist at CC recommended one of their surgeons to me. Then the surgery was scheduled for about five weeks later. Then we went up on June 26th, had pre op tests and met with surgeon on the27th and had the surgery on the 28th. I did fine and have nothing but praise for my CC surgeon and my nurses that cared for me post surgery. Hope this helps, Jim.

Phyllis Petersen  My cardiologist handle everything with CC and did a lot of the earlier tests at his hospital. Went to CC on 10/11 and 12 for pretesting and appointments, with surgery on the 13th. I had a very good experience there.

Jim Whipple  Can't believe it is only 3 weeks away. Before, I was anxious to get the date and wondering what was taking so long and now, well now I am getting a little anxious about it coming so quickly. I know just fears of the process and the finality of that process. Got to get to the point where that is just the beginning of the rest of my life.
Yes that is where I am going!!
Thanks Diane and Phyllis.
Everyone on this site is so helpful and all your experiences are soooooo unique but so significant and important.

Phyllis Petersen  I was amazed at how different each person's experience is. Stay optimistic! I really believe that positive energy helps.

Briana Morgan  Three weeks will go by quickly, then you will be relaxing on the other side like me. I felt the same way when I was told my date and it was only three weeks away. You have a great attitude! Keep it up!

Briana Morgan  Three weeks will go by quickly, then you will be relaxing on the other side like me. I felt the same way when I was told my date and it was only three weeks away. You have a great attitude! Keep it up!

Ellen Leng  The insurance people like to play doctor when they are really bean counters. Good for you for going to bat for yourself!!

Meredith Bray  I was told a week before my surgery that my surgeon (who I'd been seeing for a YEAR!) was no longer on the approved list. Oh bot did I blow a gasket! Ultimately,I won - my surgeon did the surgery and my insurance paid for it. But still - like we don't have enough to worry about approaching our surgery date, right?

Elaine Cutri  Good for you! It's unfortunate, but sometimes you have to be the squeaky wheel.
It's in the best interest of you and the insurance company. CC has much better than average outcomes (I know a few of our buddies had issues there). Best wishes. I had Dr Roselli and his "awesome" team in May 2015.

Phyllis Petersen  Sorry that the insurance company put you through the wringer, but glad that you were able to get it settled.

Phyllis Petersen  This is a scary journey, so of course you get focused on yourself. How else do you get through all the testing, preparation and angst? You have good people looking at your status and if they felt they needed to get you in sooner, they'd have you there. As for insurance companies, don't get me started. They thought nothing of leaving the surgeon waiting a long time when he tried to do a peer-to-peer. Cleveland Clinic eventually got my issue straightened out.

Lilly Black  Jim, please read my journal dated February 16 2016....I had a terrible experience but it's now behind me. Good luck!

Diane Zeigler  Better when it's quick and you don't have time to think. I would recommend not reading all the horror stories. You will do fine. CC treated me very well. I did not have a "big name" surgeon but I had a great experience.

Phyllis Petersen  Mine wasn't at that speed, but that was because of the slow way it had progressed and that I didn't have much enlargement. Still, my cardiologist didn't want to wait too long and CC said that it needed to be done within 6 months at the longest.

Sanya PHILLIPS  I had a quick turn around as well. I think it was better so I didn't dwell on ins and outs. Good luck to you and gods bless 🤗

Ted Miko  Hey Jim. I tore my tricep and when i went for surgery the dr said he wouldn't put me under because there was an issue with my heart. About two weeks later I was getting a heart cath and was told that if I had only 20% flow throughy aortic valve. If I didn't get it fixed I wouldn't make the year! The funny thing was I weight trained , hard and did 40min cardio 5times a week. I was "slowing down" but I took it as getting older. (50) Anyway , they wanted to do surgery right away, like 3weeks ! I asked if I could put it off until September (it was july when this all hit) and they agreed. It gave me time to prepare a little and try to enjoy summer. Thats how it went down for me. Its the end of week 3 recovery for me , its had its moments but Praise God I'm hear to yack about it. Just fyi. I went with tissue valve with the idea that in10-15 yrs technology will have advanced with an easier better sosolution. Good luck and God bless you bro !

Jim Whipple  Thanks Ted. I've known for years there was a problem. Just putting it off and now the time has arrived. Just got to go into it with my eyes open and believe that there is more for me in the future.

Phyllis Petersen  It took me about a month after the cardiologist sent off my file to get a call to schedule. I think it will depend on how severe yours is, who the surgeon is and his schedule, etc.

Jim Whipple  Thanks Phyllis. So you heard from them a month after they got your records, how long from when you heard from them did you actually get an appointment and then have your surgery?

Robert D'Aurora  It took a month for the Cleveland Clinic to get back to me after submitting my records too. After hearing back from them, the earliest surgery date that I could get was 2 1/2 months out.

Jim Whipple  Thanks Robert, I was hoping that it would be a quicker turn around but was afraid I would hear something like that.
Anyone else have any additional information on their experiences concerning their wait times from submitting their medical records to CC and then having their surgeries???

Catie B  I first did the remote 2nd opinion (MyConsult) process and that ran quite a bit longer than expected. I also had some complexities we were trying to iron out. (two surgeons' opinions differed). I'm not positive, but I think it was around 6-7 weeks once I resent records to request surgery.

Jim Whipple  Thanks Catie. Anyone else got some input on the subject of how long it took to get your surgery done after you sent in your records. I'm just trying to be realistic in my expectations. I know, kind of strange that I'm anxious to get it over with but I am!!!

Phyllis Petersen  Sorry I hadn't seen this sooner. It was close to 2 months after they received my records for my surgery date. It would have been longer, but the surgeon had an out-of-town trip cancelled and had some dates in October. It seemed like such a long time to wait, but it went by very quickly.

Robert D'Aurora  Good luck to you. I was pretty fortunate in that my local cardiologist's office sent all necessary records to CC.

Ellen Leng  Congrats on the good cathy! I agree that the Cardiology office should know what to send, even if they don't send it for you.

Jim Whipple  I have paperwork from CC that explains what they want but they advised me to collect it and send it myself claiming cardiology offices generally take a few more days to get it done themselves.

Phyllis Petersen  My cardiologist's office also sent my information to CC, but it did take longer than it should have because his assistant's mom had a stroke and was out. On the plus side, you'll know exactly what they have and know.

Nancy Lewis  My cardiologist sent mine as well, but I had to pick up and take to them, the CDs with the trans esophageal and the cath. They were happy to get those.

Catie B  Some retesting may be unavoidable. For example, their surgeons are very picky about echos. I'm in Cleveland right now and just had mine redone by their folks. They'll want a chest Xray, bloodwork and EKG the week of surgery, if my experience here is typical.

Diane Zeigler  I had an EKG and blood work first. Then a chest Xray and another echo. Then I met with the surgeon. This was all done on a Monday prior to my surgery the next day on Tuesday. They didn't have me scheduled to come in on Monday until the afternoon. Since you have to fast before the blood work, I was concerned about not eating and drinking. I called CC lab and they told me I could come as early as 7:00 AM and get everything done but the echo and meet with surgeon. They were very accommodating. I had had an echo here in South Carolina and I also had the heart cath here. They didn't make me redo the cath. I took the films from the cath with me. Just make sure you take ALL test results from your local cardiologist and be sure to get the dental clearance form done. Do call your surgeons office manager to make sure that you have everything they need. I had an aortic (tissue) valve replacement and I had to have two bypasses. I had a regular sternotomy which I recommend after reading about some of the problems after robotic surgery. I am very pleased with the outcome. I hope this helps. Good luck!

Corey Sines  I would coordinate with the Surgeon to have tests done before hand at a location closer to you. Most facilities usually want to run their own tests. I know CC uses 3D Echo cardiogram's and other tech that might not be available in other locations outside other major heart centers. So again, you might be able to do some locally and bring them in, but others, they will want to do at CC.

  I'd let CC decide what test they want done and where. I've been to three different hospitals and found that all of them have their own requirements and especially WHO does them. Even had a surgeon tell me I had to see their neurologist (I have seizures, under control for 9 years) and liver doc. (I have mild cirrhosis). Echo's I've found are virtually useless, all of them wanted their own and the opinions range from mild to severe mitral regurgitation. Good luck

mandy payne  My parents had gotten me on when I had my surgery. It was very helpful. Unfortunately your chest will be painful getting up and down out of bed. I highly recommend that you do get one to help you in the upcoming weeks.

PJ Fugitt  If you have that luxury then do it. But perhaps you would prefer the new beds that go up and down and are not hospital. They are permanent regular - money well spent according to one of my dearest friends. Some have bought lazy boys- they say no manual handles though. I went the inexpensive route. I already have lots of pillows on my bed in all sizes and used them in every configuration imaginable and have been very very comfortable since. Oh and I have a little foot step stool to get into bed. No problem.
The easy chair recliner would have been wonderful too but no room and no cash! Even a new couch! I have a down one and usually not a nap person but since surgery have become one on the couch!
Best wishes!!! And Blessings.

Diane Zeigler  I recommend a recliner. I slept in one quite a bit in the hospital, then in the hotel and now at home. While I do sleep in the bed now (3 mo post op), I still love my recliner. It was worth every dime. If you do get a recliner, get one with an electric control. The manual lever on most chairs would not be a good idea. We shopped quite a bit and ended up at a Relax the Back store. The chair we bought is a lift chair. It will practically stand you up!
I don't see any reason to get a hospital bed. I would rather get a recliner that I can use after I am well or at least get an adjustable mattress that are so popular right now. Hope that helps.

Joshua Trimberger  I switched between a recliner and a bed wedge. I got that at bed bath and beyond. I used it for about 6-7 weeks

Nancy Lewis  I got home tonight. I am planning to use a stack of pillows and check out a the bed wedge at bed bath and beyond.

Meredith Bray  I got an electric recliner to use. I didn't need the lift part, I was more than able to stand and sit on my own. I used the electric part to adjust positions. I needed the most help getting in and out of bed. I was extremely uncomfortable the first week I was home, and went back and forth between the bed and the recliner at night.Laying flat will likely be advised against for about a month. I tried it once to see what the big deal was, and I felt like I was suffocating. I used blankets and pillows to build a nest in bed. Surgeon told me at 2 weeks if I felt comfortable on my side that I certainly could try it. It took some getting used to - everything felt sloshy, like it wasn't quite attached to my insides. That lasted a few months, but i did sleep much better on my side.
I was thankful for the recliner because of all the naps I took the first 4 weeks after surgery. We donated the recliner after week 5 to someone who needed it more than I did.
I recommend having a plan before you leave for surgery. We were frustrated and cranky when we got home the first night. It wasn't pretty!

-Meredith

Craig Gay  Craig needed one last year after a major surgery and we ended up owning it because insurance paid for it. We kept it, knowing he would be having his aortic valve replaced as soon as he got stronger. I truly believe Craig sleeping in the hospital bed has made a major difference in getting very good sleep and not having to strain his chest when getting out of bed. The bed itself is quite comfy but I did purchase a 2 inch memory foam to put on top of it. We also borrowed an electric recliner to use in the living room that has helped.

Jim Whipple  You guys/gals are wonderful. It really is comforting to hear your views and advise on things. There is so much to take into consideration when going on this journey. Planning and more planning and learning and hearing your thoughts and experiences is a big help. Thanks

Shannon Gray  So glad you are asking such important questions. I had my surgery at CC this past Feb....very positive experience, even though I had unexpected complications after surgery. We stayed at the Courtyard Marriott. Its a little over a mile away, and we earn Marriott points, so it just made sense. I know other members here on the blog have stayed at other locations. Staying close by is very good option. I was less than 24 hours from my discharge appt. following my surgery, and I went downhill really fast. I was so thankful I was still in Cleveland, and they immediately reviewed my case and my surgeon called in to do an additional surgery. I know it may not be easy to stay close by, but if you are able, I'd do it. I would get cardiac rehab lined up near your home. Usually your Dr. will write in a request for it... My cardiologist there is Dr Brian Griffin..an amazing Dr. and person. Every time I've met with him, he makes me feel like I am his one and only patient and takes my concerns and questions to heart. Surgeon was Dr. Svennson. Another great surgeon. He saw me ever morning while I was in the hospital, also did my second surgery. He only does "first time valve surgeries". Please keep asking any questions you may have. WIshing you the best of luck.

Jim Whipple  Thanks Shannon. The surgeon you mentioned, Dr. Svennson, is the doctor I want to do my surgery. After the research I have done he appears to be the expert I need. I also have a bicuspid aortic valve which has collected a lot of calcium over the years. My cardiologist states that based on my last echo I have severe stenosis now. He has been following me for approximately 12 years. I am asymptomatic at this point but that could change at any point so it seems wise to get this done while I'm feeling good. Just sort of seems strange to fix something that isn't broke yet. Probably the fear talking there tho...

Diane Zeigler  Jim, my husband stayed at the Intercontinental Hotel and Suites. It was just a very short walk to the hospital, maybe a couple of blocks. When I got out of the hospital, we stayed there. I liked being so close to the hospital in case of any problems. Also, if you do stay there,I would request a room on the the 8th floor because those rooms have recliners which I slept in every night. My surgeon at CC was Dr. Michael Tong and I was 100% pleased with him. Also, the nurses were wonderful. I had a really great experience at CC. Good luck to you.

Diane Zeigler  Jim, I was released from the hospital on a Friday, had my release check up on the following Monday, and then flew home on Tuesday. Hope this helps. I did not start cardio rehab until I got home. It was about 7 weeks after surgery.

Amy Dorsey  Schedule your surgery early in the week. I can tell you from experience the Monday through Friday nursing staff is much better than the weekend staff. Would not recommend a late week surgery where you will be in the hospital over the weekend. Other than the aftercare I received at that hospital, everything was amazing.

Jim Whipple  Thank you Diane I will check out the Intercontinental Hotel and Suites. Much will depend on the cost factor I'm afraid. I have only heard good things about CC which is a relief to hear.

Jim Whipple  I will try to schedule my surgery on a Monday or Tuesday if for no other reason then having all the regular staff, doctors and nurses alike, on duty. I just don't know much control I will have in the scheduling process. I am still very new to this entire process so I am learning a lot and I'm sure there are many more things to learn. So any help any of you all have would is greatly appreciated. Thanks again!!

Diane Zeigler  Jim, I was at CC over the weekend. My surgery was on a Tuesday. I had no problems with the nursing staff at all even on the weekend. My nurses were all very attentive. I guess I might have just been lucky. You will be fine. Oh, there is a Holiday Inn right next to the Intercontinental Hotel. Also, there is another Intercontinental that is attached to the heart hospital. I think it is newer and more expensive than the regular Intercontinental where we stayed. Holiday inn I believe is reasonably priced. Ask for special rate for CC at any of them.

Diane Zeigler  I had Dr. Michael Tong for my surgeon. He is very young, very kind, very good. He is not one of the top named docs at CC. I loved him. I called him my angel. I wouldn't hesitate to have him as my surgeon again.

Jan Persico  Jim, I was recently (Tuesday) told by Cleveland Clinic that I need aortic valve replacement. Wow, I'm still trying to wrap my head around the news. But, here's what I know....Cleveland Clinic is awesome. I have complete trust in their ability to treat me. I still haven't decided on a surgeon, I believe all,of the surgeons must be pretty darn amazing and talented! That said, I also have lots of questions. When is your surgery scheduled? Take good care.

Diane Zeigler  I had my aortic valve replaced at CC on June 28th. They took very good care of me. I agree that all of their doctors seem to be topnotch. I had a couple of problems- a fib and low iron which required a transfusion. They handled the problems in a very routine manner, therefore, I never felt frightened. I am glad that I had the sternotomy as opposed to some of the other types of surgery. Never really had pain. Good luck to you, Jan.

Jim Whipple  Have not got a date for surgery at this time. Going through the tests and then submitting them to the doctors at Cleveland Clinic. I'm hoping to have the surgery in December. Sounds strange, hoping to have the surgery!! Like who hopes for something like that. I have been doing a lot of reading and researching about the topic but I still need more information. The saying about knowledge is power is true. Ordered Adam's book and it should arrive in the next few days.