Aortic dissection & aortic aneurysm information support group

Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

Medical terms can be challenging but internet explanations can freak you out.

I started looking through the paper work I have gotten since my surgery, so I started looking up what all the big words meant like Thrombocytosis, Leukocytosis, Mondor's disease and my list goes on.

I do know that I developed a blood clot in my upper chest post surgery (not any where near the incision and such) along with the 2 dvt's in my left leg and that is what led them to research my blood tests and that is when they found out that I had this factor 10 which is Lupus Anticoagulant disorder --- but not the Lupus disease itself.

I have to have a special blood test done instead of the standard INR to measure how thin my blood is as whatever this issue is, interfers with normal testing.

As for the Mondor's - what I've read up on the internet can leave me either concerned or just annoyed until it finally goes away on its own.  So far none of the doctors involved from surgery on, seem concerned about it, beyond them wanting me to get a mammogram --- but with the 2 ribs removed and the swelling from my latest surgery, it isn't on my top of priorities, nor do I feel it is doable --- same with an ultrasound as the thought of them pressing on the lump could make me cry just at the thought!

As for the factor 10 issue -- it may just go away on its own also --- like it could just be one of the many responses my body has had to the incredibly invasive surgery.

Along my list of these also includes acute renal failure, abnormal liver function, anemia, and infarcts in my spleen and so on.

It's enough to spin one's head around.

But as I approach 6 weeks post surgery, I'm holding on to the positive as much as possible.  So far my insides appear to be functioning as they should, beyond the whole thickness of blood issue.

I see my GP on Wednesday to make sure my overall blood work and so forth is normal.

Does it amaze any of you, that after the surgery and once we are discharged from the hospital, that it's like you are all on your own?  After them being so concerned about my white count and so forth while I was in the hospital, to not be in touch for months if at all, to not want to make sure my kidneys and liver are still working normally and such - kind of throws me for a loop.

I am thankful for everything they have done and that I'm (hopefully) on the right path.  I'm thankful to be on this side of the surgery and not having to play the waiting game.  I am starting to sleep more and eat more which of course helps with the healing process --- it's still slow - and I get tired (especially if traveling to appts or too many things happening at home at the same time).  But I can walk - yahoo -- not running yet but that's okay -- and I can type with sense (seeing that blog I posted after my surgery lets me know how much better I really am) -- at the time I was typing that I really thought I was making sense!

So many things can transpire before, during, and after surgery --- such a learning process --- and the internet can help a little, but can also freak you out.

Take care everyone --- I'll keep reading --- and all of you are always in my prayers!!!

Cher

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Comment by Harry on August 26, 2011 at 5:31

Thinking of you Cher!

 

Can't believe the post opp issues you have or discovered - hang in there, i do know the pain your going through & wish you a speedy recovery! Not sure why they never pick up these issues before, buts thats the NHS.

Your also right about being on your own. I have had a nurse's visit & the GP. All they are concerned with is a tick in the box. I explained what happened but its too complex for them, even the GP. My consultant only wants to see me in 6-8 weeks!

I sympathise with you - truly!

 

take care for now.

Harry

Comment by Benjamin J. Carey on August 26, 2011 at 2:49

Hi Cheryl,

Reading your post brought back memories of scouring the internet like a madman after I was diagnosed with an aortic aneurysm, and I agree it can be very helpful but sometimes overwhelming. Your point about "typing with sense" is hilarious. My family is still telling me stories about events that happened in the hospital and early recovery when i was loopy and didn't have all my marbles. I thought I was fine and some of the stories like not remembering where I worked sound downright impossible; but they say they are true :)

Comment by Cheryl Kerber on August 22, 2011 at 15:16

Thank you for sharing.  I feel terrible that they treated you that way.  I know it all depends on who you end up with in regards to treatment, but hopefully from this point on you will be treated better --- if not, you might need to find another place to go.  Since I'm in the US, I can't really help you out there, but there are alot on this site that are so I know they could help.

If they hadn't found my aneurysm on my chest xray (due to a cough) and then follow up with a catscan to find the dissection, I too would have been passed off.  I was only 39 and a woman, non smoker, healthy, exercised and so forth.  I didn't fit the "mold".

What I have been told is that anyone with a dissection often is checked for a heart attack and since we pass the tests, we are sent home, only to return for further testing or worse case scenario - not survive.

I am hoping that they are getting wiser to this condition --- when the actor John Ritter died from it around the same time I had my first dissection and surgery, it was finally being talked about.  But any show I happen to catch where they talk about health issues, if they bring up Aneurysms, they really don't explain much of anything.

It is something I need to pursue, but not sure how as of course we don't want to freak everyone out - it's not like everyone is walking around with one, it is just world wide, they kind of blow it off and only by fluke it is caught in time and then dealt with.

I am so glad you shared.  I didn't find this site til early this year after looking for over 6 years.  I think God put it in my path this year specifically since I ended up having surgery (this time planned) again.  These beautiful people on this site have been a Godsend to me.  Just even having them understand.  I have friends that have had cancer and other surgeries and such, but it really helps to have someone understand your specific situation.

Don't apologize for how you are writing either -- just let it flow.  It is extremely cathartic!

I hate to throw this at you, but you are going to have to advocate for you and your husband!  For what ever reason they dropped the ball after my first surgery and didn't pursue researching why this happened to me as my dissection took place when I was 38.  I did some research and found results back in 2002 from an ultrasound I had done post having a hysterectomy and it stated I had an unusually large aorta for someone my age.  They never said anything nor did anything ---who knows if i had been put on heart meds then, if all of this other stuff could have been prevented.  I obviously have something wrong whether born with it or brought on by an illness(virus) or such as I have learned that that can happen.  But for the sake of your children (as sometimes this is a hereditary condition - marfans, connective tissue disorder , etc.,) knowing if there is an answer - could help prevent or deal with the possibility of it affecting your children.  Yes, another heavy thing to deal with as a parent - "did I pass this on to my children?"   It feels horrible, but I have had to come to terms with that we don't have control over everything.  So far all the tests they have run on me haven't given a clear answer ---- my husband jokes that maybe they will name the condition I have after me ---- ugh!

Now, on to your husband --- is the dissection in his descending thoracic aorta, abdominal, in the arch etc.?

Does he have an aneurysm too?  If so - did they give you a size?

Mine was 4.2 for a long time, but grew to 5.6cm within the last year.  For women, depending on where you are health wise, they usually do surgery when it reaches 5cm.  For men it is 6cm --- but that is for the abdominal aorta --- I don't know what the criteria is for other sections.

I know when they talk about not doing surgery because the risks are high can feel incredibly daunting --- but just know it is better then them rushing into

Comment by Sharon Masterman on August 22, 2011 at 13:32

Hi there Cheryl, you are a very special lady, thats for sure. My husband works abroad driving a lorry, and on Mon 1st Aug I got up at 4 am to make his sandwiches. He should have set off the evening before, but we like to squeeze as much time as we can out when he's home. I woke him at 4.30 and he showered and went downstairs to have his breakfast. I heard him shout my name twice and then he staggered into the bedroom and crawled to the bed. He said he thought he was having a heart attack; crushing pains in his chest, shoulderblades and around his hips. I kept him calm whilst I called for an ambulance, but I didn't feel calm inside. On the way to York Hospital he was given morphine, etc. Eventually we were told he might have had a bad attack of GERD. They told us we would have to wait for twelve hours for the results of blood tests. Through the day he was crippled with pain on the bed. At 9pm that night I approached the Night Sister on the ward and asked politely if any results had come through yet. I was told she was dealing "with someone important" (her words) and that the tests hadn't "shown anything". I presume those tests were to check his heart. I asked if he could have any pain relief. We waited a while then I made him ring the bell. She literally threw two Paracetamol at him, slammed down a small measure of Gaviscon and sighed. She left. I told my husband I was going home as we had a 12 year old at home and I had a horrible feeling they might ask me to take him home! I went home in tears still in my pyjamas and not having eaten or been offered a drink.Phew this sounds so long winded Cheryl, but it is as it happened. The next day I rang the Ward to find he had been moved. I managed to contact him, and he told me they had tried to send him home twice overnight. He was now being discharged, so our eldest daughter brought him home as she works in York. She told me he was sat outside the hospital on a concrete bollard, grey with pain, clutching a small pack of Paracetamol and six Lasoprosole. 

Once he got home he went to bed ,still in pain. He asked me to fill up some hot water bottles and bean bags and pack them around his back, chest and tummy. Two days later after very little sleep and watching my husband beg me to help him we went to our GP. Because his tummy area was very sensitive and he was sweating she treat him for possible gall stones, gave us some more Lasoprosol  and Antibiotics and sent us home, giving my husband a Sick Note which read COLYSISTITIS.

Six days later, STILL in pain we went back to see another GP. He ordered a D Dimmer test, Dave had the test and we went home. Next day ANOTHER Doctor rang and told us he had a "slightly elevated test result" and asked us to go back to York Hospital. We went at once. The Hospital booked him in, and gave him a Chest X Ray! The following morning they carried out a CT scan, revealing a 6 inch descending AD. They told me he was a walking miracle. I seem to be writing this really detached Cheryl, but I can't seem to talk about this any other way. Next, he was put into an Intensive type Ward and given drugs to bring down his heart rate/BP. The Specialist came, told us it was rare and that they did not want to operate because of the risks attached. I went home and set up my lap top to research AD - I think the facts were so scary they made me feel ill. One Sister on the ward has been especially kind, actually explaining stuff to us. Our older children know whats happened to Dad (four aged 30-23) Jessie, our late blessing, knows Dads not well but she so adores him as we all do, and I can't just tell her. The Doctors have his BP down and constant, they are now juggling with the drugs. They say he has done marvellously and they are very happy with the CT scan they carried out on Sunday morning - no more tearing. He is 52, tall and slim with a good diet (he DID smoke before this) very fit for his age and very active. Apparently one of the drugs has had an advers

Comment by Cheryl Kerber on August 22, 2011 at 12:48

Sharon,

I tried to find your info (story) ---what I can get is that this involves your husband -- are you willing to share what has transpired?

They had to watch my creatinin (in regards to my kidney function) closely before I got discharged also --- I realize that our insides don't like to be monkeyed with, so they take a bit to get back into gear - especially the kidneys.  I didn't like having to be in the hospital, but also realized that that is the place you want to be if something wasn't working right.

I happened to have been put on BP meds after my first surgery as a preventative measure, but until my kidneys were back to "normal", I couldn't go back on one of them (Lisinopril) as it is hard on the kidneys (like that didn't bother me to find out) --- but my Metoprolol (beta blocker) I stayed on through out.

My blood pressure went up into a range of 140/70 at times and I wasn't used to that --- for the last 6 years they wanted me at 100/60 if possible.

Once my kidneys were back in order, starting back on the Lisinopril brought it back down into the 100/60 range.

I was also told that just the stress from surgery and the inflammation from the surgery, could affect my BP also.

I am glad to hear he is laid back and relaxed about the whole thing ---- but just so you know (now granted from a woman's point of view) the emotional part can still hit.

The psychological game that AD plays on everyone (including family/friends and so forth that are involved with one that has an AD) can hit out of nowhere and in a way that is unexpected.

My daughter who was just turning five during my first surgery, developed anxiety issues that lasted up until this surgery.  It was like a light switch turned on when she was five, and now that she knows that the dissected aneurysm has been repaired this time around, she is now more relaxed about going places and leaving me.  Granted it has only been 6 weeks but it's remarkable what a difference.

If you are willing to share, I'm hear to listen (not really driving anywhere for while until off the pain meds and getting my range of motion back a bit better :)    )    so I'm around.

Cher

Comment by Sharon Masterman on August 22, 2011 at 8:12

Dear Cher

I have only just joined the group, I was so sick of reading negative, scary stuff on the Internet, and reading the way people face recovery is inspiring. I think this site has helped. My husband may come home today if his BP remains stable and the latest kidney tests are OK. He seems quite laid back and relaxed about everything, so thats good. God Bless You Cher x

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