Does It Get Better?
25 February 2004
It is now February 24, 2004 and I am at my own home to begin my recovery from a Type B, descending aortic dissection which happened on January 17th. I am a parts manager at a local farm equipment dealership. My main hobby is horseback riding and driving my pony and cart and I also love outdoor activities like gardening and going for walks etc. Considering my fairly busy life, I am asking the big 'why' question a lot these days.
The night it happened I was feeding the horses and lifting a two gallon pail of water into one mare when "BAM" excruciating pain in my chest that brought me to my knees. I crawled over to a low wall and sat down to assess the situation as I was all alone in the barn with no help for miles around, and no phone either. I didn't think I was having a heart attack and I tried to control my breathing. I lost all feeling in both legs for about five minutes.
As soon as possible I made my way to the car and drove myself home. I called my 24 year old daughter and she made arrangements for an ambulance to come. While I was hooked up to the heart monitor in the ambulance everything read normal, even my blood pressure wasn't particularly out of control at the time in spite of the pain and anxiety. When we got to emergency, the doctor eventually gave me a shot for the pain, and then sent me home with a diagnosis of back spasms and a prescription for muscle relaxants.
I tried to manage the pain for another three days unsuccessfully and went back to the ER again. A different doctor gave me several tests and one of them showed up a possible blood clot, so I was admitted and put on blood thinners immediately. The next morning I was given a CT scan and it showed the aortic dissection.
I was sent to London, Ontario to Victoria Hospital and after a few intravenous lines and arterial lines and lots of blood pressure lowering drugs later I was sent to ICU. I spent the next week there before being transfered to the Cardiac Care Unit for another week and a half. At one point I was being administered 17 different drugs. The last CT scan showed that there was some clotting forming and they were happy with that.
I have a very basic understanding of what is happening to me and the other day my family doctor explained the CT Scan results a bit better and now I am really scared. For the past couple of weeks I have been feeling better as I adjust to the meds and the new lower blood pressure. (The doctors want it in the 100/50 range and it is a bit higher than that) The side effects are a bit of a challenge too.
I don't really know what to expect in the future as they are being a bit vague about how it will pan out. All I do know is I will never be able to ride my horses or drive my pony again as the risk of tearing again is too great. I am not to walk at any speed that would increase my heart rate and I am supposed to essentially be a couch potato for 6 months minimum. Does it get better? Can I hope to have any kind of a future or am I going to be disabled for the rest of my life? Will I always have to push the handicap buttons at stores and get others to do everything for me (I hate that the most as I am so used to doing for myself).
I am only 47 and I was just looking forward to the empty nest and possibly finding a special someone to share the rest of my life with, but I don't have anything to offer now. I don't feel very feminine and attractive anymore and it is so depressing at times. I try to be positive and I realize it is early days yet. This forum is helping to realize I am not alone in this and I hope to find something positive here. Thanks for listening.
Update: 26 November 2004
It has been just over ten months since I had a complete Type B aortic dissection and although it has been a long road, I can now say with confidence that yes, it does get better!
When I wrote the initial posting, the whole experience was still rather raw and confusing. The doctors weren't saying much and I was so weak from my hospital stay, I couldn't stay awake for more than a couple of hours at a stretch. It was a monumental task just to walk across the room or make a cup of tea, but I persevered, getting stronger every day. At first, I had to push the handicap buttons to open store doors and I had to use the courtesy scooters in Wal-Mart to get around (they are rather fun anyway). But with time, I have gained strength and I no longer need as much help as I did in the early months. I can do my own housework and I even bring in wood for the woodstove a bit. Not big armfuls like I was used to, but one or two pieces at a time. I can take the dog for short walks now without passing out or getting my heart rate up and I even was able to cut my own grass on the riding mower in late September for the first time.
My doctors felt that managing my dissection with medication was the best route for me and since I was responding to the treatment, they decided to wait on any surgery unless it was absolutely necessary. When I got home from the hospital, there were a few times when I was really unsure if I was going to make it. I was sick from the antibiotics they gave me for a bladder infection that they caused and I could not keep my meds down for a day or two. We stopped the antibiotic and things were better after that. I made one trip to emergency in April due to trying to come off one of my meds too fast and it caused some chest pain and a deep cold feeling inside at or near the site of the original tear as well as anxiety attacks and shortness of breath, but the CT scan showed no change. After that, I came off it slowly and had it wasn't a problem.
I had a regularly sheduled CT on May 30th and saw my surgeon an hour later and he said there was no change and to go and "live my life", whatever that was supposed to mean. I was pretty upset with him for saying that, but after talking it over with my family doctor, we decided that it was just the surgeon in him talking. Poor bedside manner seems to be part of a surgeons make-up I guess. But aside from that, my internist, Dr. Dresser and my family doctor, Dr. Snider are taking pretty good care of me. We reduced and finally eliminated the one drug Clonidine that was giving me the most trouble, but on the other hand, Clonidine sure kept me in the 'zone' most of the time. No mood swings or emotions whatsoever! Apparently, they use it for women who have extremely bad PMS and Menopause symptoms. You find out these things as time goes on and you ask a lot of questions. One of the other drugs I take is called Metoprolol that keeps my heart rate down. I was taking 400mg of it a day and now am down to 300mg a day. I was told that a normal person taking anything around 50mg it can stop their heart. Makes you wonder just what is going on inside that allows me to still function with that huge amount. It scares the pharmacist every time I get the prescription refilled.
I have spent a lot of time on the computer looking up everything I can about dissections. I have found out that you have to do your own research because the doctors either don't know, don't have the time to explain it to you, or they just don't want to tell you. So, I have gotten very familiar with current research from PubMed and DeBakeys and New England Journal of Medicine. The information is there, you just have to go looking for it. I have lots of time now, so I have taken advantage of that. At one point, I found out about a procedure called Stent Grafting and I got in touch with a doctor out west who wanted me as part of his study group, but I had to wait until I talked with my own surgeon about it. He said that I was not a candidate for Stent Grafting and that he knows the other doctor quite well. In fact, he taught him the procedure himself! It was worth a try anyway.
It has been a very long summer and I am looking forward to a very long winter now. My doctors and I have chosen not to put me back in the workforce any time soon and for good reason. As long as I stay fairly immobile and not do anything strenuous, there seems to be some progress. I had another CT scan on Nov. 8th and the report shows thrombosing in a few places in the false lumen and the aorta has decreased in size from 4.9 to 4.5 cm in the thoracic area and is a normal 3.5 in the abdomen. The blood is flowing normally through to the illiac arteries and also into my subclavian arteries at the top. It is starting to heal! Praise the Lord! It's not much, but its a start. I hope to see even more change by March 2005 when I have my next CT scan. My doctor was so excited she let out a whoop that got the attention of everyone else in the clinic. So, being a prescribed "couch potato" can have its benefits sometimes.
I have often wondered about others on this list, who after going through their initial crisis, have gone back to work and resumed a 'normal' life fairly soon afterwards. It seems too soon to me and it raises the question of whether it is too much too soon. I know that if I had gone back to work already, I might not be seeing the positive changes right now. It isn't fun being on all this medication or on a disability pension, but it beats the alternative. My surgeon told me that he has seen only two other dissections in his lifetime that have reversed and been totally healed. Maybe I can be the third.
So, yes, it does get better. Especially the emotional side of it if you keep busy and focus on other things that you can do in life. Being disabled is only a state of mind. I am learning many new things that I didn't have time for before like possibly writing a book or doing freelancing. I am learning to play two new instruments, both called dulcimers, but both very different instruments. Both my daughters are getting married in the new year, so we will be busy with weddings too, so maybe the winter won't be so long after all.
As I read everyones posts, I stop and pray for each and every one of you and I know your prayers for me have been answered too. Looking forward to a new future.
Discussion, comments, or questions: Debora M.
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