Joseph's Journal

Wow, has it been 8 weeks? Merry Christmas to all! I am feeling great, on an airplane heading to Cleveland to visit my sister. Heading back to work right after the holiday, I am ready! Cardiac rehab is going very well, my stamina is back, absolutely no ill effects. Take care all!

Well recovery seems to be going well, first check up with cardiologist in Mikwaukee was good last week, he won\'t need to see me again until the end of Dec to sign off on returning to work. I will get my footprint echo, bloodwork and chest x-ray again on the 15th of Dec in preparation for that visit. 30 min walks now seem like a piece of cake and am moving faster and in less pain overall. Returned to the choir at church, every bit as good as an incentive spirometer for breathing, but the voice was in sad shape, oh well. Am back in my own apartment, my parents were great since we got home, taking me in, but I feel good enough to be on my own. No driving though until Dec 9th, but who\'s counting. Getting into a cardiac rehab program appears to be a challenge, waiting for an initial consultation, but that should happen this week or next. Grocery shopping is a royal pain now that I have to actually read food labels! Calories and fat are one thing, but finding lo-cal, lo-fat and lo-sodium is a real chore. Will have to get used to it. Take care all, Joe.

Wow! I am feeling great although no where near the stamina I had before the surgery. I left the Cleveland Clinic Wed afternoon; I continue to be amazed at how quickly those 6 days went. As I walked out of the Clinic for that last time, I found myself overcome with emotion and could only give thanks to God. The two day trip home was uneventful, got to see family in my native Sandusky, OH, and stopped the next day at work, 45 min from home, it was great to see all my co-workers and hear their good wishes in person. Kind of disrupted the work flow for a bit, sorry Andy! I consider myself so fortunate compared to other people and their journals that I have read here, I am eating 3 square meals a day, have lost all of the 15 pounds of fluids I added!!!!!!, and now begin working on my recovery and on my health and well being. I continue to do my breathing with the spirometer, am almost able to cough without my Cleveland Clinic heart pillow, and just keep getting stronger every day. I am almost all the way off the Percocet, favoring prescription strength Neproxen (Aleve) at this point. I am also wearing a surgical mask around others to avoid any unnecessary germs/viruses. You know it looks fairly stupid but the first time your mom is seen carrying your luggage next to a perfectly healthy looking 52 year old, well lets just say hiding behind the mask is a welcome relief! I have to tell any of you considering open heart valve surgery, I would be hard pressed to believe that there is a better place to have it than at the Cleveland Clinic, there may be plenty on par, but those folks are professionals and ready to engage you in a supportive conversation, from those in the housekeeping staff, to those drawing your blood in the lab, to the head of the surgical team. They manage pain very aggressively so that you want to get up, walk, do all that is necessary to get better, and if you go in with a positive attitude (that they help to cultivate) this whole process can be amazingly short and easy. I do realize I only had an aortic valve replaced, and a small dilated part of my aorta removed, reattached and supported, and there are many others in these journals who had many more issues than did I, but I still feel, the Cleveland Clinic is why I seem to be doing so well today. Still a long way to go so probably best not get too far ahead of ourselves. Thanx again, Joe.

Well, well, out of the hospital tonight, I continue to get stronger and am controlling the pain with less and less medication, but I am being smart about it. One more Dr.’s appt tomorrow in Cleveland and then the long trek home with my folks. This is short due to a bad internet connection, take care all. Joe.

Day Four finds this process going very well. I am off oxygen, showering on my own (mom and dad are very relieved, apparently I was a bit gamey!), taking multiple laps around the floor, and looking very much like I don’t belong in a cardiac recovery unit, but I am constantly reminded of my limitations. Coughing is encouraged, but it really hurts. Now looks like I will be able to get out of the hospital by Tuesday, latest, and head for home over 2 days with my folks on Thursday and Friday. Some setbacks in the afternoon, which seem to be relegated around not taking pain medication, Percocet, on time. Also any of you patients with a ¾ or full length scar use a Lidocaine strip? There are 2 strips placed on either side of the incision, they last for 12 hours with the same effect as Novocain for a dentist? They discourage these because they have trouble getting the insurance companies to pay, and they are quite expensive. Thought I would ask the question as this now seems to be the focal point of my discomfort. Overall I am told I am doing very well, Thanx all and take care! Joe

Well today had its ups and downs, but overall a much better day than yesterday. Staying well medicated to manage pain, took 3 walks today, made it all the way around the floor tonight during half time of the Mich game, (they are enough to send anyone back to the OR). I am really amazed at overall how good I feel, take care and we will chat again tomorrow. Joe.

This is going to be a quick update, but it is me on the keyboard, no pinch hitters! This has been going fast, got the breathing tube out within 2 hours of surgery, I was moved out of ICU today. I just finished my first walk, short but felt good, could have maybe gone further but did not want to overdo. First meal last night, 3 meals today, I am pretty tired today but feeling good. Thank you ALL for your positive thoughts and prayers.

Hello everyone! I am Lisa Vegas, Joe\'s sister in Cleveland. I am happy to report that the surgery went very well today and that Joe is finally on the \"other side\" of this!The doctor said he was able to replace the valve and cut and repair the aorta. There is no muscle damage and his heart is strong!!!! Great news! And now they are telling us that he is recovering ahead of the curve.... I would like to thank all of you for your prayers and well wishes for Joe\'s surgery and speedy recovery. I know that he has really enjoyed being able to learn so much about what he was facing through those of you who have had a similar experience or diagnosis. Knowing my brother , he will probably be hitting the keys very soon to update you himself, but until then, I will keep you all posted on his progress! Thanks Again! Lisa

Well well modern medicine sometimes gets kicked in the shins by old fashioned scheduling conflicts. A lack of ICU space today caused my postponment until tomorrow. 5:15 am reporting time tomorrow should mean surgery for sure. Still positive and very optimistic and actually looking forward to getting this behind me. Thanx for all your prayers and if it\'s not too much to ask, please repeat them again tomorrow! Joe

Met with all the pre-op staff today and met with Dr. Gillinov. He just oozes confidence, he was assuring my mom that all would be great and not to worry. Dr. G said there was a slight chance they would repair the valve, but most likely will replace it. He asked what valve I chose and I realized that although I had decided, it would be nice to tell my surgeon, so told him the tissue valve, bovine as that is his preference.......MMMmmmmmoooooo !! My questions were easy and he had all the answers, driving about 4 weeks, in hospital about 5 days, could be out Sunday with good behavior. Did you know the sternum will heal stronger after cutting it as the body will form more calcium to fuse with the bone after a break like that, I didn\'t. Most interesting is that he will fix my slightly enlarged aorta by cutting out a section and he will either stitching it closed, or by putting in a prosthetic piece. He says my surgery is easy to medium on the hardness scale. News flash-Dr. Gillinov did Robin Williams heart surgery a couple years back, they are trying to get him for a benefit in Cleveland for the Clinic next Sept or Oct, I am so coming in for that, should be fun. My blood work came back great, Dr. G. was more complimentary about my angiogram than was the Dr. that did it, my bad cholesterol is 121 and he wants me to get it under 100 with diet and excercise, no meds for that now. My good cholesterol is 52 and should be greater than 45, (my mom is 70!) overall cholesterol is well under 200, but more work to do apparently here. So tonight for the last supper (LoL), either steak or tofu, tough decision...... Tomorrow 10 am I report to the hospital, Eastern Daylight Time. You all can start praying then, kick it up a notch about 12 – 12:30 eastern, and fire on all cylinders with the Lord by about 1:30 to 3!! Thanx again to all of you for all your prayers, see you on the other side of this, God willing. Joe

Ok, today had the pleasure of having a heart catheterization. No big deal really and the good news is no blockages were found, which means simply that my chances for minimally invasive surgery just increased. It will still be Dr. Gillinov\'s call on the table, but I am saying prayers. Walking very gingerly this evening with a heck of a bandage. Only bad news is slight calcification evidence of bad cholesterol being too high, need to handle with diet after this is all done. So far the Cleveland Clinic has been a model of efficiency. Tomorrow is my big day in terms of pre-op and when I meet with Dr. Gillinov, I have my questions prepared and will put them out there tomorrow night. Staying at my sisters is a blessing, having lots of laughs and staying loose. My sister Lisa will update this blog during my surgery and recovery until I can tickle the keyboard again. Thanx again for all your prayers. Joe

Met with my cardiologist here in Milwaukee, Dr. Timothy Woods, of Froedtert Hospital. He is a great guy and seems very knowledgeable. I wanted to make sure there is a good information flow between my surgeon in Cleveland, Dr. Marc Gillinov and Dr. Woods. Dr. Gillinov thinks I may have a bicuspid aortic valve (2 flaps for those of you who don’t blog on this site :) ), but admittedly had not yet seen all of my diagnosis tests at the time he said that. My cardiologist is quite certain the valve has the normal 3 flaps but developed a leak, so stay tuned for the answer to that puzzler! I am leaving Sunday afternoon for Cleveland, gonna party hearty for a couple days with my sister (can you say caffeine free diet coke) before hitting the gurney. Both cardiologists and surgeon agree it has been leaking for a while and just suddenly opened up more to cause the leak. Here are the questions I asked of Dr. Woods and the answers (those of you business associates and friends can stop reading now this is for the benefit of the heart geeks on this site!):-) 1. Tell me about the coordination between you and the Cleveland Clinic 2. Tell me about Cardiac Rehab 3. How long till I drive? 4. Precautions before – Mask on the airplane? 5. Typical recovery time in hospital? At home? 6. Will my meds change? 7. What other questions should I ask the surgeon? 8. How long on blood thinners with a tissue valve? 1. He says CC is good about getting them information, I am going to try to get the surgeon to talk directly to my cardiologist after the surgery. 2. Will be about 3 times per week for a 4-6 week period to start with another 6 week class after that. My inclination is to do as much of this as I can. 3. 4-6 weeks for driving usually (I am pushing for 3 if the surgery is minimally invasive) 4. Dr. Woods said some studies indicate more germs on an airplane and I don\'t want to get sick before the surgery. He said if I wear one there, definitely wear one back as that is when you really need to take precautions, so got his nurse to give me some masks. Also when any other medical procedures are done, you must tell them you have a prosthetic valve, got to “antibiotic up” before dentists and so forth. 5. 3-5 days in the hospital and still getting the same 6-8 weeks after that. 6. I am on an older beta blocker, so it may change. 7. Other questions for the surgeon: a. I also have a slightly dilated aortic root, he needs to know how the surgeon fixes that and I should ask how he is planning to. b. The cardiologist always wants to know the valve type and size. c. If I really want to wow the surgeon, Dr. Woods said to ask him what size valve I need to avoid PPM (Patient Prosthesis Mismatch). HAS ANYONE HEARD OF THIS? Apparently the larger the valve the better. d. Need to ask him the lifestyle questions above. e. How long will I need to be on Coumadin 8. The cardiologist thinks 3 months max typically for Coumadin with a tissue valve. I am reading more from Adam’s book, and I will admit some of it is a bit nerve wracking, but I appreciate all he went through to give us his insight. If anyone has any other questions I should ask my surgeon, please leave them in my guestbook. Thanx! Joe

Ok traveled to Cleveland with my folks this week and met with Dr. A. Marc Gillinov at the Cleveland Clinic. He confirmed that I need surgery within 3 months. I really liked Dr. Gillinov\'s approach and have asked him to do my surgery. The good news is that he had a cancellation, so I am scheduled here on Oct. 27th! My choice is a tissue valve, so I can avoid Coumadin, plus Dr. Gillinov does mostly tissue valves and actually prefers cow valves as there is less crowning, compared to pig valves. Feeling very comfortable with my decisions and I do want to keep this process moving. Thanx again to all for your kind words.

Man was I surprised at the 5 people who wrote in my guestbook, 5 strangers giving me support, wow and thank you to Mark in TX, Gary Vice, Joy Vera, Ricki Shine and Diana, my gosh thank you all for the kind words. Mark, my second opinion is with Dr. Gillinov tomorrow at the Cleveland Clinic, and Diana, yes I downloaded Adam\'s book and am trying to read it on the drive today. Joy, yes I am trying to read everything here, this is a bit overwhelming, but I sure am glad you started this site Adam, thanx.

Ok guys, here is what I got. My aortic valve, the valve that allows blood to go from the Left Ventricle to the aorta for distribution to the body, is leaking quite a bit. They were also concerned about a possible weakness or tear in the aorta, but results indicate that is not the case, which is good in that I would need surgery immediately. First diagnosis with Dr. Woods my new cardiologist and the surgeon at Froedtert Hospital indicates the best way to fix this valve is to replace it with a mechanical valve vs. a pig valve. Downsides of the mechanical valve is that it will require that I be on Coumodin, a blood thinner, for the rest of my life. The jury is still out as far as I am concerned on the best valve approach. I am also getting advice that the Cleveland Clinic is THE place to have this done, so I am scheduled for a surgical second opinion there Friday Oct. 8th, and if all goes well the surgery will happen shortly thereafter. I am very optimistic and please keep my family and me in your prayers. Thank you. Please let me know if you don\'t want to receive e-mail updates on this journal or let me know if I have forgotten to put someone on the list. Thanx.