A Aortic Dissection story

 
 
My name is Lieve Kopp, age 64, living with my husband near Leuven, an old university town in Belgium. When having an AD problem it is useful to be close to a university hospital.

On the first of February 2014 I suffered a B aortic dissection. I felt a sudden sharp pain in the sternum region, which after two hours radiated to my flank; it was worse than childbirth labor (I have had three natural childbirths). This happened at 1:00am as I was preparing to go to bed. We called our GP; expecting a heart attack she took an ECG but it was quite normal. After an initial painkiller injection, the pain did not substantially subside and an hour later a second shot followed, which helped somewhat. Being at the maximum dose and for lack of a proper diagnosis our GP told us to go to the university hospital emergency department.

A series of tests there did not produce a conclusive result, perhaps because I declined a CT scan of my chest because I had just two weeks earlier had one to control for the full recovery from pneumonia. The following two days I went through a few more tests; the gall-bladder was not an option because it had been removed many years ago (at age 33), leaving the stomach as alternative suspect. A gastroscopy was planned but not carried out. Finally after three days I was diagnosed with AD-B, and told that I would stay in hospital for some time, to start conservative treatment.

‘Some time’ turned out to be 10 weeks. My kidney values were poor, probably because of the B dissection; moreover I have three kidneys and a history of related complications that date back to when I was twenty. I had little appetite and was losing weight lying in bed almost all the time. On the basis of several CT scans, which showed an aortic inner wall with a tear that over time had progressed all the way up to the aorta arch it was decided to schedule an operation to insert two endo-prostheses into the upper part of the vein. Before going into this operation my general condition had to improve – I was using a wheelchair to move over distances beyond my room – and more specifically my kidney values (creatinine levels) had to come down considerably. This took weeks, and the numerous CT scans that use contrast liquids often worsened the situation. For weeks my arms and face were swollen because of kidney insufficiency, and perhaps (?) because of the various drugs I was given. A fine balance between blood pressure control and kidney function had to be maintained, which was a very slow process.

Ultimately things improved enough for me to continue recovering at home, with my husband present at all time, and by mid-June my condition had improved enough to schedule the operation, which was performed by Prof. Dr. S. Houthoofdt. It lasted some 7 hours and she ran into some complications because the subclavian artery was apparently of poor quality. The operation started with a caritido-caritido subclavian bypass, and subsequently a TEVAR endoprosthesis was inserted via the groin arteries. After a few days in intensive recovery, I returned to a standard room. I was hoping to recover enough to attend the our youngest daughter‘s wedding. Also, to my great delight the fluid in my swollen face and limps had suddenly disappeared after the operation, which might not be a critical result but I greatly appreciated getting back my looks.

However within less than a week the situation got worse again. One day I felt weak, had no appetite and at 10:30 pm started vomiting with my blood pressure was rising again (17 systolic).  In another CT scan I was diagnosed with a full-fledged A dissection, from the trunk past the arch, – the inner wall tear had progressed all the way to the aortic valve, which was not functioning properly (1/3 only) as a result. My situation was deteriorating rapidly; the pericardium was filling with fluid and I had only a few hours to live. All this fortunately happened in the university hospital, and by 9:00 am I was told that a second operation was scheduled by 10:15am. The cardiac surgeon was Prof. Dr. Rega.

He later explained that he started the procedure without exactly knowing what he would find. After re-placing the ascending aorta (the A section) with a prosthesis, the shape of the aortic valve was largely restored and it did not need to be replaced with a synthetic one. This was an open heart operation; the blood circulation was taken over by a heart-lung machine, and my body temperature was lowered to some 12°C. The end result of the two operations was that apart from a few sections most of the upper aorta was replaced by, or reinforced with synthetic material. The second operation lasted 8 hours and it was not without risk. I suffered (and am still suffering) some short-term memory loss as a result, but things could have been considerably worse (paralysis of the legs, e.g.).

While in recovery in intensive care and still unconscious I suffered a cardiac arrest, but with 20 minutes of hard work I was successfully reanimated. After two days I was awake, talking to the children who were visiting, but I cannot remember anything. My son showed me a 15 minute video of the wedding, but I could not even recall having seen it.

However all in all the recovery went well. It is a slow process though; the first few weeks I could hardly step out of bed; I had lost 20 kg (45 lbs) of weight. I was extremely weak; my rib cage was hurting like hell (cracked ribs, a by-product of opening the rib cage for the cardiac operation and the subsequent reanimation), and I could not even move or turn around when lying in bed. By July 20th I was well enough to return home, with my husband taking care of me. I was moving from my bed to the bathroom in a wheelchair, and most of the time I slept – probably the best thing that could happen to me at the time. Nurses came in to check the sutures, and weeks later a physiotherapist came by to get me walking again. The muscles in my legs were wasting and weak, and I was losing a lot of hair, apparently a typical conse-quence of the long anesthesia, weight loss and my deteriorating general condition.

The recovery process was to take a year, and it did. By January 2015 (11 months after the initial dissection) I was driving my car again, but only for short trips because I could not turn my head sufficiently, something that even today after another 10 months is not without its problems. The first major improvement was that my rib cage and sternum were healing and stopped being painful. Two months after the operation I could move through the house, and after some 7 months we went to visit friends for the first time. Today I can spend an afternoon with a friend, doing some shopping and enjoying a coffee after two hours of walking around. We go out and spend an evening with friends, but the next day I need to recuperate. The worst remaining problem is that my left upper arm is still hurting; I cannot move my elbow to shoulder height, which makes combing or drying my hair a problem.

I am taking morning and evening pills to improve blood fluidity and control blood pressure levels:
-    Bisoprolol 2.5mg morning and 2.5mg in the evening (blood pressure control)
-    Clopidogrel 75 mg in the morning (anti-coagulant)
-    Coversyl 5 mg in the morning (blood pressure control)
-    Amlor (Amlodipin) 2.5 mg in the morning (blood pressure)
-    Total IP 80 mg in the evening (cholesterol)
-    Metaformine 500 mg (blood sugar level reduction) – gives me acute diarrhea, looking for an al-ternative

The combination has been changed quite a few times over the last 18 months; at times my blood pressure was too high, and more often too low. Adjusting the doses and combination of drugs has proven useful. When my feet are too swollen I take Burinex LEO 1 mg (a diuretic) which helps, and also lowers the blood pressure. We have bought a blood pressure monitor, which I use with some regularity. In the meantime I can feel my blood pressure going up or down, even before taking a measurement.
 
The main problem is that my overall energy level is still low, and unlikely to improve much going forward. Most people do not understand or appreciate my condition, particularly because my looks have improved substantially over time, having gained weight again (+11 kg) and with (new, darker!) hair growing again. Their implicit assumption is that my physical condition has improved in line with my looks, but this is not so. I get tired quickly, and some days are worse than others. Moreover I was and still am suffering from painful knee joints. Before the dissection I was due for a knee operation, but it got cancelled. The problem kind of disappeared while laying down over extended periods of time, but returned when I started walking again. I do not think I will have a knee operation, at least not anytime soon.

Attending (noisy) receptions is tiring because it is hard for me to speak loud enough, and to stand for longer periods. Two months ago I attended a wedding party, and this was ok.

The warm summer temperatures tend to lower my blood pressure and during the summer months I pre-ferred to stay inside and out of the sun. Travel is limited as well; to avoid quickly changing blood pressure levels I was advised not to fly during the first few years. Long trips by car are probably also not a thing to do; I have not tried trips beyond 100 km.

At a psychological level I was seriously depressed during the months following the operation. I attended cardiac physiotherapy classes organized by Leuven University, and this helped somewhat. I went to see a psychologist who tried to lift my spirits. Overall I am ambivalent about surviving this perilous incident; the good news is that I am still alive, the bad news is that I do not have a real life, at least not by the standards I was used to. A mixed blessing. My time horizon is statistically limited, and I know that. Besides, other people’s time horizon is also limited, but they prefer not to know. I love to cook, and after starting to cook again, I felt better. The food improved too; my husband tried hard, but I prefer my own recipes.

This summer I experienced a minor thrombosis of a vessel that made me loose vision in my right eye for a few minutes. After that everything returned to normal. Subsequent testing concluded that this was a minor temporary clogging of a vessel near the visual nerve. Scary, but without consequences.
I did not have a history of high blood pressure, high cholesterol or elevated blood sugar levels. I have smoked for 40 years, but my lungs were in ‘amazingly’ good shape. A genetic analysis concluded that there was no genetic predestination, although a far relative (a cousin of my mother) also suffered a dissection. My children were advised to keep an eye on their aorta.

Lieve Kopp, 18 November 2015.

 

World map of Aortic Dissection

---

Find people with Aortic Dissection through the map. Connect with them and share experiences. Join the Aortic Dissection community.

Related books

---