February. 26 marks one year since the day I got my second chance again. I am grateful to be alive and glad at this point that I agreed to the surgery. The doctors had recommended that my Mom go thru the surgery a little over 6 years ago. She had been been through bypass surgery about 23 years prior, but because of her horrendous experiences with that one, she decided she would rather die than have the surgery. After a very difficult period of heart failure, she did. Because of the skills of my doctors, my determination and God's will, I made it through almost 9 months of recuperation with several bumps along the way. There were good times too, among them was cardiac rehab which allowed my self competitiveness to shine through. I could feel my endurance increasing with each race on the machines. For many weeks prior to the rehab, I walked slowly with small steps because I was afraid I would have a heart attack if I pushed at all. Between my cardiologist and the rehab , my confidence grew and the steps got longer. My cardiologist saw me often during the 1st half year. He really cared and I could feel it. My wife and son encouraged me to progress, stay on my food plan, keep the weight off, and exercise regularly. I prayed daily. The support I received from family and friends was amazing! I prayed every day, something I'm not known for. Even the memory of my Mom's illness helped me push.
When I first decided to have the surgery, I set a goal for myself. Since I don't like the cold, my wife and I would spend the winter of 2014 in Florida enjoying the sun and it's warmth. This winter we are indeed on a long trip to Florida. Currently we are staying in Orlando. soon we will be moving to the Gulf area , heading back home to the Chicago area when Spring returns.
But the best time of all came on December 29, when he and his wife Justine said their vows together in the small mountain town of Whistler, British Columbia. After which Justine was honored ringing the big bell 2/3 up the mountain which opened the mountain for first tracks tearly the very next morning. They were surrounded by their close family and friends. He had gotten engaged on the second day post his valve surgery and they accomplished a new beginning to their lives. Since then he has also returned to his competitive snowboarding which was the other part of his goal.
I am a happy man. I am much better than I was a year ago, and I am looking forward to a productive and satisfying life in the future years.
Next Tuesday marks 7 weeks since this ordeal began. It seems funny to think about these last seven weeks as an ordeal, because they (the weeks and the procedure) have given me an extension of the life I probably would not otherwise have had. Without it I might not be able to see my son get married or get to know my future daughter in law better than I know her now. Most of my life has been fantastic and satisfying. Who knows what the future brings! In two weeks, the doctor thinks I will be able to drive again. I have rejoined my weekend coffee group this week. The members of the group have offered to drive me back and forth so I can be with them again. They have been giving me a lot of support with phone calls and wonderful get well cards during the past 7. The cardiologist says my improvement is great and I am steadily getting stronger. My wife, who has taken care of me constantly, is getting the opportunity to leave me alone for longer periods, and she is getting the opportunity to be with her friends more often.
I don't ever want to do this again! I think I said that 17 years ago. I have always been lucky and had superior medical care. This time was no exception. My family has given me unbelievably loving caretaking. So I suspect that if my God calls on me to go through this in another 17 years, I wil. The doctors told me 17 years ago that if I had to have a redo, it would be easier because of the developing technology. I got news for them. None of this was easy. It was worthwhile, not easy. Guess what. They told me the same thing this time. We'll have to wait and see.
One of the best parts of this experience has been the creation of this blog and the ability to share the blogs of others going through similar experiences.. That has really helped me stay calm and hopeful as well as hearing similar tales of the experiences of others. Thanks to all of the readers and other writers.
Only four weeks have passed. It seems like yesterday!
Journal posted on March 23, 2013
It's been a long while since I have added to this journal, and I felt like the effort was important to let folks know how I have been progressing. On the whole my doctors say that I am doing very well..My heart is strong. The valve is working like new. It is new! And day by day I am able to accomplish a little more. I had to return to the hospital a few days after I left because I had a very bad cough. It was constant. I just kept coughing and coughing. Occasionally I would cough up some sputum which was very thick and clear and colorless. Medication did not do much to relieve the cough. Testing showed that I did not have pneumonia and that the cough was not due tp a virus or bacterial infection. Then after a few days I developed atrial fibrillation. It was exhausting and uncomfortable. Fortunately, within 24 hours my heart self corrected, and I returned to sinus rhythm by myself. It has not returned, and I am taking medication to help control repeats. I am also on blood thinners for a few months. They are helping me adjust to the bovine valve. Surprisingly I do not have a lot of pain. My chest still hurts, but the pain does not make me fear coughing or losing my breath. I don't sleep more than a couple of hours a night, and I still use a recliner instead of a bed. I hope to move to a bed in the next few nights. My right leg is still swollen. I wear some large sized UGGs when I walk around or go outside to the car. My socks don't fit my right foot.. I guess i'm still a mess.
I am ready for a long recuperation. The cards and letters make me smile, and my friends and family have been incredibly helpful. My cardiologist is very helpful. I have contact with him every day on the phone, and I've been seeing him once a week. He has been incredibly attentive and really helps me keep plugging..
The last two days have been very busy. The doctors in this department work in teams, and seem to meet on every patient every day, and they decide together what they are doing with each patient. Each of the doctors involved sees every patient and the schedule is worked out so that the test doctors, nurse practitioners, and consultants can see you at the time involved. Last night Dr. stone dropped by to see Adrienne and I. He has been my libid cardiologist for the last 17 years. I ave really felt honored to be his patient. His advise and knowledge have always been right on.
My son and his fiancée came in to see us last night as they have every night. They are planning their wedding for this December and the level of excitement is high. Our friend, Melody, who lives down the street from the hospital comes daily and has been a great strength to us both.
Today was another busy day- X-rays, doctors, the PT have kept me busy. I feel so lucky for the attention I have received and the absolutely excellent care that they offer heart valve patients here. I am very sure that I made the right decision in choosing this hospital and meeting all these professional, excellent medical people.
Right now, the plan is to go home on Monday or Tuesday, depending on when they can complete the remaining tests. I still need a MRA and an Echo, and have the last tube removed. I still have some sessions with the PT. both he and the OT are working with both Adrienne and I to make my return home easier, with tips on how to handle the environment of our one and car. Shrty after I return home, I will see my rimary doctor and my cardiologist. They will decide when I am strong enough to enter cardiac rehab. My recuperation will probably take several months. Adrienne and I are starting to plan our future,
It is now post-op 3 days. I was only in intensive care for one day. The last 2 days have been very uncomfortable. I have been having trouble breathing, but I am we'll enough to know that the food sucks. I have to walk around the floor 3 times a day and sit in a chair for one hour, 3 times a day. My wife has always been there and oversees that I do everything is required. I can't even go to the bathroom without help. Every doctor, and aide is an expert in their field and can explain what is happening and make decisions for me which are helpful for me. I felt like I was constantly thirsty and could not have water at first because of the breathing tube. The heart/lung machine had been primed with water and I gained 20 lbs. My hands and feet are all swollen. I have a chest X-ray every morning and again each time they remove a drainage tube. I started with 5 and am now down to one. I sleep a lot because of the pain pills. The doctors tell me I am doing much better than other patients who have had the same surgery. I have a single room and Adrienne can nap on a moveable couch. The staff provides her with blankets and linens. My son and his fiancée just walked into the room and I want to spend the rest of the evening with them. I am working with an OT and PT and they think I will be able to go directly home. I think I will be released next Monday.
The surgery went well! We are now I. The ICU with my dad. He has a nurse with him 24/7 plus he has a ton of monitors connected to him that make lots of fun beeping noises. They told us he is not on many medications and they will only provide pain meds as requested. As other OHS families and patients have experienced, he has tubes coming out of everywhere on his body and then some. According to the nurses, he is tied down because he still has the breathing tube going in his mouth (I was not tied down so it does disturb me a bit). Since it is already 7:30pm, they plan to let him sleep and work on taking out the breathing tube in the morning.
Overall, everything appears to have gone well and he is on the road to recovery. Please check out the new photos of Team Ron.
We just received a phone call phone Dr. McCarthy telling us my dad is being sewn up and we can see him around 5:30pm. It has been confirmed that my father has the family bicuspid valve which was heavily calcified. They replaced it with a cow valve and performed 3 bypasses.
I will update again after I have seen him.
My dad was taken from the prep room at 9:30am and the surgery started at 10:20am. We just received the first call from the OR to update us and they said everything was going well. They have harvested the veins they need and they have his chest open. Dr. McCarthy, the main heart surgeon, will now start the main portion of the surgery which will taken 2.5 to 3 hrs. We were told they will give us another update in two hours.
In the meantime, we are watching the snow come down through the windows of the waiting room on the 7th floor.
Waiting for This surgery is an emotional roller coaster. One minute I'm Excited an energized - looking forward to being fixed. The next minute I'm fearful of dying. Another coupl of moments and I'm peacefully thinking about all the support I'm getting from friends and family and how lucky I am.Then at times I feel extremely tired, or I worry about some passing symptoms. Or the problems that got me into this mess. Then there are the times that I feel normal and get on with my life as if nothing in particular was going on. At least after the surgery I can use my energy to get better and think positive choices for my future.
I have four more days to D Day. I am starting to stop some of my meds in preparation. Adrienne and Eric have made hotel reservation near the hospital. Eric has made his arrangements at work. The hospital has given us brochures to familiarize ourselves with what is going to happen. Adam Pick's book has been the most helpful. His description of his experience has been right on. They bring back memories of my first bypass surgery 17 years ago.
My plan is to stay at the hotel the night prior to the procedure. That way I can roll out of bed and into the hospital without making the 35 mile drive from home. Adrienne will take over the journa for a couple of days until I can think clearly again. She and Eric will be with me much of the time. They will be giving me much encouragement as I work to get better. I am looking forward to writing my next journal entry.
Last week, Adrienne and I visited with my internist. We spent the time discussing how to choose the right surgeon and hospital to have the surgery. I had had the same discussion with my cardiologist a few days ago. My state of mind gets more confused about my illusion of choice as each day passes. In the best of worlds my choice would be not to make a choice and get on with enjoying my life. HA!
On Wednesday, I went to Northwestern Hospital for an evaluation and consultation determined that I would make my decision after this final consult. Northwestern had requested a lot more paperwork and history than Cleveland Clinic. The surgeon that I was to see had spent about 15 years of his professional life aat Cleveland Clinic. He had participated in 4000 valve surgeries.
My morning started with a lengthy visit with a cardiologist I have known for about 17 years. He specialized in helping me get my lipids under control. He has been a fantastic friend and doctor to me, and he is one of the few physicians who has kept me alive and made the quality of my life as good as its been the last 17 years. He gave me a physical and reviewed the paperwork and history. Yep! I need an aortic valve replacement (bovine) and three bypasses and fairly soon at that! That afternoon I had several tests and saw an incredibly well known surgeon. He was straight forward, honest,put forth a treatment plan and explained the benefits and dangers. He introduced me to part of the heart team.
There was no more delaying, no more looking for a way out, no more denying what I didn't have to face. I had talked with several of the best cardiologists in my world as well as some of the top cardio surgeons in this country. They all agreed. As whipped cream on the cake, I had watched my son breeze through a very similar surgery at Cleveland Clinic about 7 weeks ago. He has returned to work and is getting ready to start snowboarding again.
Many years ago a doctor once told me that the process of denial is a wonderful thing. It helps a person deal with problems that are so hard to face, they are ruining a person's whole life. The only warning she gave me was that I could not let the denial keep me from getting the medical attn. I might need. That would be too destructive.
I'm ready! The surgeon asked me when I wanted the surgery. I asked him what he was doing later that afternoon. Not quite that simple. He thought that there were indications of a possible kidney problem, so this week I am seeing a nephrologist at Northwestern to review what the surgeon had seen.
My surgery is currently scheduled for Feb 26. I plan to be in cardiac intensive care for 1 to 1 1/2 days and then 5 to 6 days in a step down unit. Those times are not definite. I will be at Northwestern as long as I need them.
My family plans to be with me as much as possible during that time. I can't imagine better support. My friends will be available as much as possible. My internist has given me some assistance in falling asleep at nights until the surgery.
My family and all of the consultants these past few weeks have agreed with my decisions. That is a tremendous amount of supports just by itself.
My intent is to continue with this blog as regularly as possible with the exception of the days I am in intensive care. My wife with take over for those days.
This week has been really long. I got a call from Cleveland Clinic the other day. They are ready to set up a date for the surgery. The plan is to replace the aortic valve and and bypass 3 blockages. The nurse practitioner who spoke with me was very supportive. She is the nurse practitioner for Dr. Stabek who will do the surgery if I go to Cleveland Clinic. She was also the nurse practitioner for Dr. McCarthy when he was at Cleveland Clinic. He is now at Northwestern Memorial in Chicago. I will be meeting him on Wednesday for his opinion.
I'm not sleeping well anymore. My anxiety is getting the better of me. My sleep is full of nightmares and seem very real. When I wake in the morning I'm still tired. I made the mistake of reading about valve disease in the Merck Manual. The Merck was not very helpful when I read about myself. But I still need to feel that I've learned as much as possible so I can make the best decision for myself this Wednesday.
My local cardiologist who I've seen for seventeen years changed his mind about my treatment plan. We were treating my condition medically (pills) for now. After he received the report from CC, he encouraged to select where I wanted to have the surgery done and do it in the near future. We talked about how to select the doctor and the hospital. He was very positive about my second opinion and supported my getting a third opinion at Northwestern.
My family and friends are very supportive. My son is incredible. Our roles have flipped.. He is the role model and is very encouraging. He is wiling to do whatever he needs to in order to helping me get to the other side (of the hospital).
He had a similar surgery about 7 weeks ago and has had an amazing recovery. He is back at work and ready to get back to snowboarding again.
...And I Thought I Was Through With Paperwork When I Retired
Journal posted on January 24, 2013
I haven't written an entry in my journal for several days. Instead I've been trying to get second opinions before I agree to the surgery I am now pretty sure I need. Tomorrow I am seeing my regular cardiologist to discuss the differences between his original opinion and the additional knowledge we have gained from the studies done at Cleveland Clinic. If we follow his treatment plan what are the likely outcomes as compared to CC. Next week I am seeing the cardiologist who has acted as my lipidologist for about the past seventeen years. His work has gotten me from a high total cholesterol of 330 to a much lower number which we had to raise a bit in order to stay around the recommended levels. I am also going to consult with Patrick McCarthy, a surgeon from Northwestern Memorial Hospital, for whom I've developed a great deal of respect in the past few weeks. It's amazing how many talented physicians there are in the field of cardiac medicine.
Emotionally I'm feeling somewhat tense, and I worry about my immediate future. I'm still sleeping pretty well and I am working intellectually to understand what is happening to me. I'm not as upset as I was when I underwent open heart surgery the first time seventeen years ago. And this time there seems to be incredible advances in technique and outcome.
My son who had his valve repaired at CC five weeks ago is back to work and driving again. He is still planning to do some snowboarding this winter. What a role model he is!
The medication is definitely helping me live well, although I am less active than before. I had some difficulty traversing the halls at CC by foot last week. And some of the meds make me tire easily, but I am not complaining much. Friends and family are providing me with a ton of support! The quality of my life is almost acceptable.
I hope the waiting will be over soon. I know that whichever team gets to work with me, they will be fantastic.
We came home from CC Wednesday afternoon. Flying Southwestern Airlines would have been fun if I hadn't felt so stressed and indecisive about my decision. The fly right through the turbulence. I think they do it intentionally. They don't try to fly above or below it. I think they aim for it.
I was happy to get home. It seemed as if we had been gone for a week instead of two days. The cardiologist is supposed to call me on Friday and let me know officially what their plan is and who the surgeon will be. It's Friday afternoon and we haven't talked to him. I have made appointments with my ;local cardiologist for next Friday and my primary doctor for a week from next Monday.
The recommendation from my local cardiologist is different than the CC cardiologist. It is true that some of the test scores were different in Cleveland than here and that may be the reason. But I want to discuss the situation with my local cardiologist. He is recommendlng a medical approach (medication) for as long as possible. The other recommendation is for the surgery to bypass the blockage in the main artery and replace the valve. The pros and cons are involved, and it is very hard to make the decision. Someone said to me the other day that it is sometimes best to take a big chance today for a better payoff tomorrow.
Maybe, maybe not! It is very stressful.
Adrienne and I manage to get out together every day. We eat out at least once a day, and I get to see friends every day. I wish my confusion were over, and I would see a clear path for the near future. I don't get really stressed often, but when I do, it means feeling down and somewhat confused for a few days. Then there's an aha! and I relax and make up my mind. This time it's harder than usual because both solutions have negative aspects that are scary to me. I trust all of my experts and know they are all working on my behalf. I saw my son breeze through his surgery five weeks ago. He started to drive yesterday and went to work today. I hope my decision falls into place soon.
Thanks to all of you who are listening. The support is incredible and enables me to keep going.
Today was a really busy day. We got ito Cleveland early yesterday afternoon and had a nice dinner at the Intercontinental Hotel. We turned in early , watched TV for awhile and had a pretty good night. We caught the campus bus early this morning. When we registered at the front desk, I was given an itinerary of the day's events Several tests and and interview with nurse, and we got an hour for lunch before meeting my cardiologist and his fellow. No time to eat! I had to fill out several forms about symptoms and medical history. It took the whole period. I was very impressed with Dr Menon and his associate. At first they were dubious about the value of the surgery. But by the time they finished with the additional tests they ordered, they were both convinced that the surgery to give me a new valve and at the same time to bypass the blocked heart vessel was the best and only way to go. The surgery is also called a redo. I went to CC because I thought that would be their response. Now that I heard them say it and start to make plans, my bottom dropped out. I did not want to hear that. My druthers are to stay alive with a good quality of life. This is going to be my chance at that. Maybe! We are flying home tomorrow. My plan is to see my two cardiologists and rehash their opinions. Then I will make the decision. Deciding between two negative alternatives is the hardest choice to make. To be continued....
Monday we fly to Cleveland to start this leg of the journey! I made all of the reservations last Friday, and it all went smoothly. Adrienne and I will be staying at the Clinic Guesthouse which is a 1.2 block walk from the building we will be working in on Tuesday. They even have a bus every few minutes to get us back and forth to the heart center. My first stop is getting an EKG and then I will see a cardiologist who will order any future test he will need. I have heard that CC (Cleveland Clinic) does all of their own testing. In case that rumor isn't true, I brought films from enough previous testing to keep them busy. Tomorrow AM I will call the concierge at CC and ask them to arrange for a car to bring us to the clinic from the airport. We will stay there until the testing is complete and a plan of action is discussed. When we return home in a couple of days, we will see my local cardiologist to make the future happen. Adrienne and my son are my greatest support. My friends who know about this have also given me many words of encouragement. I almost suspect that the friends in my weekend coffee group at Panera will send me a bagel and coffee by UPS to remind me to get back by next weekend. The folks at work have been exceptionally gracious wishing me a happy return when I am better. Heart problems seem to run in the male members of my family, and the extended family has also given me tons of support No matter how much support I get, though, the anxiety creeps thru. It does feel good, however, to feel the love and concern. The meetings this week might end up with a medical plan of medications. It may end up with a surgical option. Either way I am getting ready for what the future holds..