care after aortic dissection

Timothy

Where do you live (UK or USA, a lot of people on here dont say where they are as it affects your care and any advice others may give you?). As well as my post below, my understanding  is a Vascular Surgeon should be looking after care of your type B Aorta problem.

David

Wow! I didn't think I'd find anyone else that had a type A aortic dissection. Im craig and Live in Colorado usa! Im 37 and also had a type A aortic dissection 2 years ago. I was in the same boat, who is helping me recover. Who is in charge? Well no one. I had a great bunch of cardiologist that were great at surgery but horrible about explaining life after. I'm still figuring it out. I had a awesome run of a year without issues working 40-50 hours in heavy construction. and then Developed afib. Atrial afibulation. I have had it rough since, meds like beta blockers and me don't get a long. Finding the right med is tricky. Im getting ablation done in a couple months and hope that Sorts this out. I was curious how you are now and what meds? Thanks!

Glad to have found this discussion and so glad you all came through your surgeries!  My husband had a Type A Aortic Dissection...apparently had an aneurysm but we knew nothing about it.  It was Christmas day, he had gone out to blow some leaves...found him back inside.  He had just taken some pills and felt like they were stuck in his throat.  After about an hour and a half, the feeling did not go away, so we decided to go the the ER.  They did some blood work and ekg...nothing.  Then all of a sudden, he had excrutiating pain that shifted from the front to the back...all his vitals went crazy.  They immediately suspected an aortic dissection.  Soon the cardiac surgeon was on his way and emergency surgery was performed.  The surgeon said it was a very bad tear and apparently had just erupted through the third lining of the aorta.  Used a piece of dacron material to fix it...don’t have the records yet to state the length, etc. He survived and they sent him home 3 days after surgery.  He is walking several “laps” around the house a day and up and down the stairs, usually 1x a day.  The night of surgery, he also had a collapsed lung (while in SICU) so the inserted a chest tube,  He still has quite a bit of soreness from the open heart surgery, also where they made an incision in the groin area, and where the chest tube was.  They did not stitch this opening up and it is painful for him.  They connected us with home care nursing...they come once or twice a week for a couple of weeks, since his appointment with the surgeon isn’t until the end of the month.  He did see the NP a few days after he returned home.  They sent him home on lasix, amiodorone, potassium, and a baby aspirin per day.  He has two days of amiodorone left and they want him to continue the baby aspirin, which I am hesistant about since he has had two bouts of multiple ulcers in the past.  They told him no pushing, pulling, hands raised for 3 months...but can lift 5-10 lbs per arm.  For the first month, he has to sit in the back seat when we travel; if all goes well, they will let him drive in 30 days and also allow him to raise his arms slightly.  While in the hospital, they had several folks (OT, a nagivator)...meet with us to go over what he can and cannot do. Reading about your accounts, I feel very blessed to have so much guidance and information from our medical support people.  They said they will help. us get connected with a cardiac physician who will do the required monitoring and follow ups. I anticipate that he won’t have to take any prescriptions after he finishes the amiodorone prescription.  For years, we have taken many natural supplements, under a holistic type of medical doctor’s guidance.  I am hoping they will let him substitute Wobenzym and Nattokinase rather than the baby aspirin, at some point.   He was very active before this (68 years old)...chopped wood, carried heavy loads of woods upstairs, etc.  He is retired, but enjoys heavy labor.  He has complained about getting short of breath when walking and sometimes talking...the nurse said it sometimes takes a couple of weeks or so for that to go away.   They usually take his vitals...check his lungs...and all seems ok and lungs are clear...I imagine part of it is that he can’t comfortably take a deep breath yet...he uses a C-pap to sleep..He hasn’t had much sleep so far...hard to sleep in the hospital, and now he is sleeping in a recliner when he can, but it is hard to get comfortable and muscle fatigue is driving him nuts.  Today he is 2 weeks post surgery, so he has a ways to go just to heal from the chest surgery.  The surgeon assured him that his heart is “fixed.”. He had no heart issues going into surgery...just the aorta issue.  When I find out what follow ups/monitoring he will have, I will post.

10 months ago I had open heart surgery. I had a type A Aneurysm that ruptured in the Ascending Aorta Arch. I have a tear from the ascending down descenting to the left leg past the illiac. The aneurysm torn my aorta off from the heart to the illiac artery.

i was at work and felt a pop in my throat then I felt a warm liquid spread across my back thoracic area. I knew something was wrong so the first aider at work took me to a medical centre where my doctor was close to work.

She called the ambulance and i was at the emergency dept. Within an hour i was being prepped for open heart surgery.

7 hours for surgery I was awake 3 days later.

The thoracic surgeon replaced aortic arch and reattached my aorta to the heart and the illiac artery.

I still have the tear from the arch down the descending to my left leg artery.

I take a blood thinner heart and blood pressure, a cholesterol, 2 irons, 2 water tabbie.

Not sure how you had no pain. Im a tough cookie and felt the pain others are talking about but was able to push the boundaries. I checked myself out of hospital once i could walk a loop of the wards.

I saw the thoracic people after 4 weeks and cleared that visit then flew overseas after 6 weeks for a months rest.

Saw the cardiologist at 3 months told her my left leg felt weak she referred me to a vascular surgeon. I got the all clear to go back to work that day as well.

At 6 months i did CT Angiogram and saw vascular surgeon. My results my falso lumen showed the tear from arch descending to illiac. He told my cardiologist that they did not want to operate but just monitor.

9 months i did another CT Angiogram and saw the cardiologist she told me the vascular surgeons were still not keen to operate but monitor.

My kidneys are now being affected by the meds so i asked the cardiologist to work with my GP and advise which meds can be adjusted.

From my 10month visit to cardiologist i have stopped water tabbies (fusemide) only take one spiractin once a day and the new blood pressure pill has been adjusted. All the other meds same.

I do blood tests every 2 weeks just to monitor kidneys.....since taking the new meds I have more energy and dont feel so faint during work and when i get home from work. Will know what level my kidney function is at next week, cross fingers i'm hoping its better.

The tear is still an issue however, my focus at this stage is getting my kidney function out of Stage 3b to Stage 1, then at one year 1 will see kidney specialists if no improvements with my kidneys then see vascular surgeons.

Just keep asking questions, if your not feeling right work out if its your meds or something else....ask you GP and get them to do referrals to your cardiologist or vascular surgeon or whoever.

Also you can get a script for 1 to 2 year meds so you dont have to go back and forwards. Make sure your doctors referral and script  to your specialist whether that is the cardiologist or vascular is a year validity....Not sure where everyone is but that's how it is in Melbourne Australia.

Before i had my surgery i was training for a half marathon, I was pretty fit for my age but now its about my aorta and taking care of it.....i dont miss the running....now i look forward to getting my kidneys right and taking a holiday. 

My mum and dad passed away 4 months before my open heart. My dad had same operation but at 75 years of age he died at 82years old in 2016 because he missed my mum she passed 3 months before him at 83. Point is my condition and my dads is hereditary....lucky me. I am 53 years old go figure....So not entirely the same but i know what i can look for and make adjustments lifestyle and medication changes.

?Hope my sharing helps someone, take care 

 

November 25th 2017 about 10am My wife Julie came crawling out of our bedroom saying her chest was hurting. She was in excruciating pain. She said she couldn't feel her left leg. The ambulance was here in about 2 minutes. After a ct scan at the hospital they rushed her into emergency surgery that lasted 7 hours. The surgeon came into the waiting room and said that she had suffered a Type A ascending aortic dissection he told us that she was strong and had made it through the surgery ok but would not know how she was until she woke up. He told us to expect brain damage, paralysis, loss of kidneys, blindness and possibly a colostomy bag.

She was in the hospital 10 days and was released after 2 liters of fluid were removed from around her lungs.(Plural effusion) After 2 days at home she suddenly felt bad pain in her abdomen. I rushed her back to the hospital. The kept her in a regular room that night but could not control her pain and she was moved to I.C.U. again. She was in the hospital for another month.They finally had three tubes put in her chest to keep the fluid from building up around her lungs That pain finally went away but we could not get an answer as to what caused it. We saw in the hospital records that her aorta in her abdomen was a 3.6 cm when she was released and was at 5.6 when she came back. We also saw a mention of a aortic aneurysm ruptured. We are now waiting to have a consultation with a surgeon in Atlanta 150 miles away as to having her aorta, close to her Illiac arteries repaired with either stents or another surgery. We were not told to exercise or not. If she should take an aspirin, drink alcohol, have sex, drink coffee. We know how serious this but I don't know why we have not been given any instructions on after care. We don't even have any appointments with our surgeon, or cardiologist just the one in Atlanta and that isn't until 6 weeks from now.            Her left leg is weak also they did an ultrasound and said the aorta had dissected into the illiac arteries.

Hi Timothy40679 Julie, when she woke up after the emergency surgery to repair her ascending aortic dissection also had a very weak left leg. Thank God she didn't have any of the other things described by the surgeon  She could only walk 1/64th of a mile at first. She had just turned 50 when the dissection happened and had previously been working as a plumber with me for the last 10 years. She was very strong and we are told that is why she lived and did so well. Since then she finally got a referral from her cardiologist to have a sonogram to see why her leg was weak and found that her aorta had dissected all the way to her illiac  artery. She was then given a MRI of her whole aorta and our surgeon sent us to the thoracic surgeon in Atlanta. The reason given to us was that there are stents that allow blood to the kidneys and only certain doctors have access to these stents. We are going next week for a consultation with him to see what are options are. She is alot stronger now and hope that she doesn't have to have another major surgery. We have cut her blood pressure meds (on our own) from 2 pills twice a day to a half a pill twice a day. That keeps her pressure at about 135/78 she is slowly getting back some energy and finally her appetite with the help of thc cookies we acquired on our own. She had lost 25 lbs in the hospital and now after 4 months has gained 3 back. Her ribs feel like she has a giant rubber band around her chest and are very sore. She coughs when she is standing up or sitting up but does not cough when laying down. As far as no one being in charge of our condition we know exactly what you mean! It's like they say ok I did my part and you lived so now I wash my hands of you and stick a feather in my hat. You didn't die on my watch. It's bizarre and kind of tells you how lucky you are to be alive. There are not alot of you ascending aortic dissection survivors out there. They just don't know how to deal with you yet.       

After Julie's emergency surgery for a Type Aortic dissection on Nov.25th 2017 we were referred to a surgeon 150 miles away because of the type B dissection that I thought was causing the weakness in her left leg. We got to the consultation and we were told that the aortic arch from her heart down to her abdominal aorta was going to be replaced. We were shocked. We thought that the first surgery had taken care of the type A dissection but found out that open heart surgery was going to have to happen again 5 months after the first one. Two open heart surgeries (at least) are the standard way that this type of dissection is repaired and usually a third is needed where the patient is opened from the shoulder blade to the belly button organs are moved out of the way and the descending aorta is repaired. (Elephants trunk) Julie is now part of a research study to get what is called a frozen elephants trunk device approved by the FDA. It has been used in Europe for years very successfully. It makes the third and worst surgery not needed. The frozen elephants trunk surgery was done on May 29th 2018 and now Sep. 14th. 2018 she is doing so much better. She has her appetite back, no weakness in her left leg. We are walking a mile a day she is getting better every day. She does have a paralyzed left vocal cord that was a result of the surgery and she can't drink thin liquids. Everything has to be thickened up to honey consistency or she chokes. We are waiting in hopes that it repairs it's self. The surgeon told her she could go back to her usual activities, no weight restriction or anything. We are so blessed her recovery is amazing.       

Hi Timothy, my husband had a AAA Aortic Aneurysm operation on Oct. 15/18 , we are from Alberta, Canada. He was told while in hospital about not lifting anything over 5 lbs, no driving for approx. 4 to 6 weeks, shower only(not to let water spray on chest on incision). They did not tell us what symptoms would be like after surgery ( 3 and a half weeks), some days not eating, breathing really shallow at times, feet and legs very swollen, has to have a urine bottle beside him because he thinks he will not make it to bathroom, just very weak etc. My husband is 68 years old, is an ex smoker, which does not help. When he had the surgery (3 1/2 hours), he was in recovery and could not move his leg or toes, they had to go back into surgery to find out why, the artery across from the artery that the bulbous aneurysm was on was totally blocked with plaque, so they had to put another stent in that artery, so it was like an 8 hour surgery. It is really hard to find any information on this sort of condition, especially for me being the Caregiver, I really got worried last Saturday, because his temperature was 101 degrees and his breathing was so bad, hospital took CT scan, x-ray, blood, urine sample and everything turned out good , so I guess we just go with the flow.

Has anybody experienced nosebleeds? How long does severe weakness last and sore back?