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Established April 15, 1995
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27 August 2002
I'll try to get right to the point since I'm not much of a writer. My name is Bob Westerlund. In April 1999, at the age of 37, I accidentally discovered that I had a defective bicuspid aortic valve and a 5.1 cm ascending aortic aneurysm during a check up due to some chest pains I was having (not related). Although, I ignorantly had no idea what that meant, I knew it must not be that good since my wife, who is a cardiac nurse, sat quietly white as a ghost.
My cardiologist first suggested surgery. I went to Cleveland Clinic for a second opinion where cardiologist, Dr. Heupler, and surgeon, Dr. Bruce Lytle recommended to wait while having MRI's every 6 months since the possibility of death was greater through the complicated surgery than waiting. At the first sign of growth, the option of surgery was to be revisited. My cardiologist in Pittsburgh agreed with the recommendation of Cleveland and put me on a beta-blocker.
Well, it's been three long years and it's been tough. I'm not suppose to strain or stress to avoid dissection and it's been hard. I have two young boys (Bobby 11, and Jimmy 10) who I use to rough house with. I was an avid weight lifter but no more. I think about it all the time. I feel all I do anymore is wait for it to grow...but not tear. I know a lot of you can relate.
After my latest check up at Presby Hospital in Pittsburgh, my cardiologist said that he recommends surgery because it looks as if it may have grown to 5.4 cm. Also, surgeon, Dr. Pellagreni (sp?) said that he thinks it is time. I'm looking for other opinions also. In two days I go back to Cleveland Clinic to get a second opinion. I need to know if it may still be worth waiting or if it is time. And if it is time, should I repair the valve too or leave it alone if it is working normal. I think if I do have it, I would like to keep the bicuspid valve and live without blood-thinners as long as possible.
The only two things I know for sure at this point are that I am going crazy (I'm usually not a person who worries) and that my wife is a saint. She puts up with all my moods and keeps pushing for appointments and answers...I love you Meg.
Update: 29 Aug 2002
First of all thank you for all your prayers, well wishes and advice. It was overwhelming to get so many sincere responses so quickly.
I have to respond, first, to all of you together because I just got back from my trip to Cleveland. The visit has confirmed that the aneurysm has grown (5.5 cm). This means I will need to have it repaired. Although, in the back of my mind, I always knew that if it didn't rupture I would need an operation, it is now reality. I need to deal with that. It is going to take a few days for it to sink in and to start making a lot of decisions.
Meg and I will have to decide where to have it done and with whom (Cleveland or Pittsburgh), when to have it done (ASAP, during the Christmas holiday or at the end of May for summer break because I'm a teacher), whether to have the valve repaired at the same time and if so which way among other things.
Unfortunately, our visit did not help us with any of these decisions other than the fact that I need surgery. The cardiologist did not say much other than talk to the surgeon. I don't know if he was hiding something that he didn't want to talk about or what. We will talk to the surgeon as early as Friday or as late as Monday...so more waiting.
I just wanted to let you all know how much your letters meant to us and that I will be getting in touch with you individually as soon as I can.
Thanks,
Update: 8 Sep 2002
With the advice from many support members, family members, medical professionals and, of course, my wife, Meg, I've made a lot of decisions since my last letter. I have decided to have the surgery as soon as possible and will have it done at the Cleveland Clinic. Dr. Bruce Lytle will operate on me on September 27th. He agreed that he will try to save my existing bicuspid valve as long as it looks good and is working properly.
I'll let you all know how I'm doing as soon as I can get in front of this computer after I get home. Thanks for all your thoughts and prayers.
Update: 2 Dec 2002
As I look back at my first narrative, I'm glad I wrote that "I was not much of a writer" because maybe that will give me some excuse why I haven't given an update since the surgery. I apologize for any of you who were waiting or worried.
After nine full weeks I feel good! The operation went as well as I hoped thanks to the skilled hands of Dr. Bruce Lytle and his staff at The Cleveland Clinic and all the prayers and well wishes from all over. I am sincerely sure that the peace I had going into the operation and how well everything worked out was due to the prayers and support I had from my huge family, great friends and the numerous people who I did not know who put me on their prayer list. Thank You.
The aneurysm was cut out and replaced by a synthetic sleeve and the bicuspid valve was saved....no coumadin! Dr. Lytle was able to even make the valve work a bit better and hopefully extending the life of the valve. The valve had been elongated over the years by the weight of the aneurysm. By stitching it up to the wall, he was able to give it enough support so that the opening of the valve could go back to its original circular shape. They tell me that I have about a 33% chance that the bicuspid aortic valve will work properly for the rest of my life, 33% chance that it will slowly malfunction over my life and a 33% chance that it will start leaking and will need fixed over the next 10 to 20 years. I like my chances of not having another open-heart surgery.
The recovery hasn't been "text book". As I explain my recovery, I want you to know that I am not complaining, I am just reporting and informing. I have been very blessed as I have said before. The first few days out of the ICU were difficult because not only was I feeling the surgery pains in my chest but I had to deal with terrible migraines. No one was sure why I was having them and nothing seemed to ease the pain. I was out of the hospital in 5 days and it took another 5 days before the headaches went away. While recovering, my sternum would click and pop anytime I would move. I thought this was normal but they tell you to call if anything like this happens. Dr. Lytle wanted to see again to rule out infection and determine what was going on So I made the trip again to Cleveland from Pittsburgh to have them take blood tests and x-rays. Over the next two days, they found no infection and said that sternum clips looked solid so the clicking (which I still have) wasn't anything to worry about. One thing they were concerned with was that my blood count was real low. The Cleveland Clinic will do everything they can to not give you a unit of blood although they had debated it since my levels were so low. They decided to let my body replenish itself and I would have to work through the feeling of dizziness and weak (which I still have). As I recovered back at home, I periodically would get deep pains in my chest and down my left arm. One day it got so bad that my wife called our brother in-law (who happens to be a cardiologist) and had me readmitted (this time in Pittsburgh) for tests. The Pittsburgh doctors found that I had pericarditis and pleural effusion (fluid around the heart and lungs) causing the chest pain and wanted me to stay for a few days to treat it with medicine before going back in and draining it. Luckily for me, in two and a half days the meds cleared the fluid completely and I was released from the hospital.
My recovery now consists of stretching, exercising and walking/jogging on the treadmill for at least 30 minutes a day. I am on 25mg of Toprol beta blocker and a baby aspirin each day for the rest of my life. I also take iron pills to try to get my blood count up and will get checked again in two weeks. Physically I feel pretty good. I have a sore chest which some have told me could last up to a year. I get tired when I'm on my feet long which I'm told will go away when my blood count goes up. The only other thing, which no one could explain for me, is that my heart pounds so hard constantly. It shakes my whole insides. It makes me feel nervous or something. I hope it will eventually will go away. Maybe some of you could help. But as I said before...I'm not complaining.
Looking back on it all, I feel I am very fortunate to have gone through this. I am a better person now. I realize how many good people are out there who care about others. I know the power of prayer. I appreciate life more than ever. I am closer to my family and friends. Above all, I love my wife more than ever. Meg, thank you for ALWAYS being there for me...I LOVE YOU.
Discussion, comments, or questions: Bob Westerlund
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