William's Journal

It has been 3 years since my aortic valve replacement. The surgery had some complications but thanks to the doctors at St.Lukes hospital in St.Louis I am fully recovered.

Here it is almost 6 months after my first surgery to replace my aortic valve. Today I finished my 36 cardiac rehab sessions. I am feeling much stronger, still experience a small amount of pain in the areas where the pacemaker was implanted and where the incision was made in my abdomen to do the pericardial window. I have encountered some a-fib while exercising but it doesn\'t last very long so the doctor is not worried about it. I will continue working out at a local gym and try to build on the progress I made in rehab.

Yesterday I was released for the 2nd time in a month. Well my earlier post about draining the fluid from around my heart and lungs was way too optimistic. It turns out it required another surgery to do a pericardial window to remove the fluid from around my heart, at the same time 2 liters of fluid was drained from around my right lung. When I woke up from the surgery I had 2 drain tubes coming out of my chest, after a few days these were removed. They had taken me off of coumadin before surgery so a few days after surgery they restarted the coumadin it took a few days for the INR number to get high enough for them to release me. I was surprised that this surgery was more painful than the valve replacement surgery. Last night was the best nights sleep I have had in a month. One benefit of having 2 surgeries and spending 23 days in the hospital is that I have lost 20 lbs. I am looking forward to recovering at home and slowly regaining my strength.

I was readmitted to the hospital Friday night for a rapid heart rate. The pacemaker was fine but a chest X-Ray and echo showed fluid on my lungs and fluid in the sack around the heart. Tomorrow they are going to drain the fluid from both places. I hope to be home by Wed or Thus, just another bump in the road to recovery.

Today is my 66th Birthday, a milestone that I wasn\'t sure I would make. I have been home from the hospital for 10 days now. I am sleeping better, 5 or 6 hours in bed and then a couple of hours in a recliner. They told me to expect to have pain in areas where there was no pain before, they said that my nerves would start waking up and as they did I would experience pain. They were right it seems that each day brings a new pain.I have noticed that one day I will feel great and then the next day I won\'t have near the energy I had the day before. I am still trying to get used to feeling my heart beating so strongly. The pacemaker won\'t let my heart go below 80 beats per minute, prior to surgery my resting heart rate was 60 because of the beta blocker I take for essential tremor.I will see the surgeon next week and I hope he gives me permission to drive again and gives me permission to start cardiac rehab. When it is very quiet I can hear my ON-X valve clicking my wife says I sound like an old watch ticking. I want to thank everyone for their kind thoughts and prayers, it has been a great comfort to me knowing that so many people care. Bill

It looks like I will be going home today, just waiting on the surgeon to release me. The past 13 days have surely been life altering, what a roller coaster ride. I will have to make some lifestyle changes and be much less of a klutz since I will be on blood thinners, no more shaving with a blade razor, and careful when working with my power tools. I can live wih this, it is just the way my life will have to be. I will start on cardiac rehab in a few weeks. I will post more later.

Sorry I haven\'t written sooner but they had discontinued my tremor medicine before surgery and didn\'t restart it until a few days ago. my tremors were so bad it was difficult for me to feed myself, for several days I was on a liquid diet so Jackie had to feed me. they restarted it earlier this week aand I am now finally able to type. I am making progress albeit slow ,I seem to take 2 steps forward and 1 step back. Last night I had a bad reaction to a sleeping pill called Ambien, I was the talk of the nurses this morning. Evidently I started halucanating and thought I was being shot at, I don\'t remember some of the things they said I did, I can remember waking up several times not knowing who I was or where I was, this was a really bad trip. It took me most of the morning to come to my senses,I don\'t ever want have an experience like that again. I am still hoping to come home this weekend the levels of my blood thinner have been slowly increasing, they were at 1.4 this morning but have to get close to 2 before they release me.

This is the first day that I have felt well enough to post something. The surgery on the 8th went well. The problems started on the 10th, the temporary pace maker stopped working for about 15 seconds and my heart stopped, luckily it started working again. The same thing happened the next two days, each time this happened they increased the output of the pacemaker to the point where I could feel the wires in my chest tingling. So on Sunday morning they installed a permenent pacemaker. Needless to say from Thursday till Sunday I got little or no sleep. The new permanent pace.maker worked fine. During the time I was waiting for the permenent pace maker I noticed I was having difficulty breathing, I thought it was just from anxiety. They had been using a portable X-ray machine to do a chest X-ray  everyday.and never saw a problem when I Ieft the ICU and went to the step down unit they sent me to the X-ray lab for a side view of my chest and discovered I had fluid on my lungs the next day they drew out 2 litres of fluid I immediately started breathing easier, what I thought was anxiety was actually the fluid build up. I have now progresed to the point where they are just waiting until my INR reaches 2 then I will finally be able to go home. Bill

Bill continues to be strong and his progress after the pacemaker has been super. Today they drained about 2 liters from around his lungs. The fluid was keeping his lungs from inflating, so now he has room to breathe. They\'re talking about sending him home this weekend! HOW FABULOUS! I forgot to mention the very cool thing that the surgeon asked Bill before the pacemaker surgery: on which side do you hold your shotgun? Bill said, \"ON MY RIGHT\" OK, then I\'ll put it on the left side! This man does not know my husband, and asked the perfect question, and one that was telling him that there was a full and complete life after all this stress!!! More later. Jackie

Hallelujah! We have moved to the step down ICU! The next move will be home! Bill received a permanent pacemaker on Sunday morning since the temp one \"hiccupped\" 3 times. He could feel the heart stopping each time, so the anxiety of that was outrageous. The doctors wanted to give his heart every oportunity to self correct but these continued episodes had to stop. Bill has not slept much since Friday nite, so that\'s the first order of business. Then on to walking a lot, and better breathing. Sense of humor is coming back, and today, our 24th wedding anniversary was celebrated this morning in the ICU. I got everything I wanted; kisses from my sweetie. Can you believe his pacemaker comes with a remote modem so the pacemaker manufacturer can keep track of the performance and the battery! Things are looking up! Bill\'s room in step down is awesome; much like a hotel room. It\'s very quiet in there so I am glad he will get some real sleep. Thank you all so much for the many prayers and good wishes. Jackie

This journey is just that. Good days and not so good days. Tomorrow morning Bill will have a short procedure to install a permanent pacemaker. This was not part of the original plan, but sometimes this is what happens. He\'s been here in ICU since the surgery, and the temp pacemaker has, shall we say, hicupped 3 times, and thank God, restarted. Needless to say this has been very frightening for both of us. All other vitals have returned to where they should be. Please keep those prayers coming, we\'re not out of the woods just yet. Thanks. Jackie

Today is day 3 and it is much better than yesterday. When I walked in this morning I saw an awake and very clear headed husband. He had already been up in the chair for 3 hours and was back in bed resting! Today he got to have solid food for lunch and his grilled chicken sandwich looked yummy! The 2 painful drain tubes were removed this afternoon so we continue to move forward. Hopefully we will get him out of ICU and into the step down ICU tomorrow. He did get a unit of whole blood this morning and I think that was a good idea ,as he was so much better after getting it. We continue to rely on the temp pacemaker and hope that this rhythm situation corrects itself. Today was a good day. Thank you, God, for your generosity and for your holding Bill in the palm of your loving hands. Thank you also to our wonderful friends and family who continue to keep us in their prayers and who have been so kind to us both. This is the most stressful thing I have been through in many years, but this too shall pass, and we will be the better for having gone through it.

Well just as Adam had predicted, day 2 was not a great day. Many meds were changed, tried and we finally have a good pain solution. Poor baby hurts so from the drain tubes in lung and behind heart. His surgeon also said it\'s because of opening the chest, even with the mini. Pain between the shoulders is tough because when are you not resting on your back, even upright in a chair? Progress today included sitting in a chair for quite a bit of today, a WALK out into the hallway and back (yeah!), a clear liquid diet, removing the cathater, and getting back to oral meds and cutting down on the IV meds. Blood pressure is getting back to normal. What we need now is for the heart rhythm to correct itself. Right now the temp pacemaker is keeping all in rhyrhm, and we need for him to do that on his own. It is always a possibility after valve surgery that one could require a perm pacemaker, but it\'s too soon to tell right now. Prayers for this self correction would be most appreciated. We also need to get rid of some fluids that the body is holding. Still in ICU for tonite; will see what tomorrow brings. Jackie

More good news: the breathing tube is OUT! There were some boughts of nausea and he barfed up some bile, but hopefully that is all behind us. What a brave man, my husband. Never a complaint. We worked for several hours to wean him off the ventilator, but apparently he had so much anesthesia in his system that it was just too soon. I think it was about 8:30 pm when he passed all the breathing tests required. More tomorrow, goodnight. Jackie

Bill is out of surgery and in ICU. Still on ventilator for now until fog lifts. Old valve was definately a bicuspid; will have to speak to the manufacturer about this defect. LOL. It\'s been a stressful day. Bill went to OR at 7:30 am and went to. ICU at about 2:15 pm but that was just as the surgeon expected. He was able to do the less invasive cut and put in the On_X valve. Thank you all for your many prayers and good wishes. God bless Sandy, Guy, Don, Mike, and Lynn for sitting with me. Thank you, God for getting him this far. Jackie

Well tomorrow is the big day, the surgeons office called today and said the extra tests he ordered last week came back OK. I will arrive at the hospital at 5:30 am with the surgery at 7:15. The surgery should last 4 hours, then a day or 2 in ICU and a few more in a regular room and hopefully back home by next week. I was so glad I was able to finish my performances in The Mousetrap without incident, the show closed Sunday, it was fun and helped keep my mind off of the surgery. My wife Jackie will be posting updates here for the next couple of days. Thanks for all the words of encouragement, it has helped hearing from both friends and fellow heart valve replacement patients. I will sign off for now and finish getting things ready for tomorrow. Bill

After talking to my Surgeon yesterday I have decided to go with the ON-X mechanical valve. It will be installed with the minimally invasive surgery which I hope leads to a shorter recovery period. Surgery will be in less than one month May 8Th, All I can do now is to relax and tie up any loose ends before the surgery. I find that it is hard not to be consumed by thoughts about the surgery it seems to invade every waking moment. In Vietnam you always knew there was a chance you would die but you were young and invincible and such thoughts weren\'t taken as seriously as they should have been. Now at 65 I no longer feel invincible and the chance of death seems to be more on my mind. It\'s ironic back then I was in danger of dying because someone wanted to kill me, now it is because someone is trying to save my life. I need to put all this in God\'s hands and try to find a peaceful place and stay there for the next month.

I am so happy I bought Adam\'s book and found out about this site. I just finished reading the book and am passing it on to my wife. The idea of having major heart surgery is frightening but with the knowledge I have acquired from the book and the web site I am much less apprehensive about it. I have sent the link to my journal to my friends and family. Just a reminder if you post a comment please put your name at the end so I will know who sent it the website does not track where the post came from.I am so blessed to have so many people in my corner as I face this life altering surgery. I will try to post each day to keep everyone up to date on what is happening on this journey. Have a Happy Easter/Passover. Bill

For the past 2 days I have been researching the different types of heart valves. I am leaning towards a mechanical valve because it will outlive me. tissue valves has a life span of between 8 and 15 years, when they fail you have to undergo another surgery to replace it. If I thought I wouldn\'t live long enough to worry about a replacement valve again I would probably go with a tissue valve and not worry about being on blood thinners the rest of my life. My family history has a lot of longevity in it many members living into their 90\'s and 1 aunt living to 102. My arteries are in good shape so other than the bad valve I am in pretty good shape. I will sign off for now I have to leave for rehearsal for The Mousetrap.