Lion goes to the ICU and other tales of adventure

Wow, so scary! Is the treatment for this just being on blood thinners? So sorry you had such a scary experience. Yes, always listen to your body! My hubby has been going thru something lately....his blood pressure is through the roof and he has back pain. So far the doctors haven't found anything but he has an appt with a GI doc to get his liver checked out. You know when something isn't right. Hope you have no more harrowing trips to the ER! Best wishes with the new job too.

LP,

Was this incident preceded by you flying somewhere? Long distance flights have been known to cause these issues. I have been involved in two legal cases resulting from passengers developing thrombophlebitis from long distance flights. In the one case it was not a case of the leg not just being stiff, but massive leg pain.

It's been mentioned previously on this board that because J Pouchers are prone to dehydration, they are also more prone to clotting than the average person. Drinking alcohol and flying are events that will dehydrate a normal person and moreso a J Poucher, ostomate or in fact any person without a colon.

Oh man. So sorry. This is crazy.

On the plus you you have a bit of gift for story telling.

The Lion needs to sleep tonight...you need some really good, healthy rest, something to calm those post traumatic nerves and a change of pace...So first, congratulations on the new job, second...NOT fun week, I am so sorry this is going on...did they give you a why/why not? How come/how to avoid? Your poor wife must have been at wits' end along with you...Hang in there, ask tons of questions and make sure that the docs give you all of the answers and be a pest...it is your body/health that we are talking about here...and double check all of the med/food contradictions out there...I have recently found out that certain foods do not marry well with blood thinners...(there is a site for that) and be careful...minor bumps and bruises are no longer minor when on blood thinners so be careful...
And mostly, hugs
Sharon

Thanks for the well wishes everyone.

'Why' is the big question. The short answer is I may never know. There are a few things in play. One is my (and all of your, so listen up) diagnosis of IBD. Talking to the GI yesterday there is clear and definite linking between IBD and the potential for clotting issues. It revolves around your body being in a constant state of inflammation (officially chronic inflammation) - and I haven't been very proactive with my pouch lately. I also have some other effects weighing against me. One is that I work at a home office and am handcuffed to my desk. I don't move around alot, and my life outside of work is largely sedentary. Another is, as CT points out, hydration. I'm not the worst with this but I'm not the best either. There is also the possibility of genetic mutations and other inherited conditions but I was checked for those in 2007 and all were negative. I've learned these tests become much harder to administer with any accuracy after you're on thinners, and since I'll be on them the rest of my life, I might not ever know. I'll have more info after I talk to the hematologist.

For those interested, the basis for this is something called Virchow's triangle (or triad) and you can read more about it here.
[URL=http://en.wikipedia.org/wiki/Virchow's_triad]http://en.wikipedia.org/wiki/Virchow's_triad[/URL]

The treatment going forward, especially since I've had a course of tpa, is the blood thinners. They'll slowly breakdown what i have left while my body simultaneously works to calcify and attach the clots permanently to my vessel walls. Hopefully being on the thinners keeps others from developing and the ones in my legs from moving, but that's not a guarantee. I'm not supposed to fly over 4 hours for example, although being on blood thinners reduces my risk for trouble if I do.

CTB - Hard to tell what the environmental influences were because it's hard to know when this started. I did have a couple of long flights in October that may have contributed to this when i went to Hawaii, but the longest I was in the air at any one time was 6 hours. That's longer than the 4 hour window they've given me, but far from the long transatlantic flights and the like that I think are probably now permanently off my radar.

LP-

Unlikely that those shorter flights would have contributed. Usually thrombophlebitis occurs as a result of 10 plus hour flights. The two cases I was involved with, one was from Africa to the USA and the other from the Middle East to the USA. Very long flights with no stoppages. In my research I found a case where a local resident died as a result of a clot/pulmonary embolism after a long flight from Asia to the USA. There was then litigation over life insurance benefits after that death, the issue being whether it was an "accidental death" under the policy.

Because of this situation, it is imperative for you to stay hydrated and I am sure the Doctors reinforced that with you.

I just went through my 3rd bout of pulmonary emboli - in both lungs like you. First happened in December of 2010. Then in March of 2012. They never found clots in my legs. I had flown to Hawaii the month before the 2010 incident so it was assumed that was the cause. After the second bout the PE was thought to have been caused by BabyHead Broid (in 'as large as a BabyHead') - my huge fibroid tumor. So BabyHead had to be born. I waited until December 2012 (because I'd met my deductible for the year and had to have it removed before the end of the year. BabyHead weighed over a kilo - over 2.2 pounds. That's one huge head. I had to stop Warfarin before the surgery and start with Lovenox injections which I had to continue for a few weeks after the surgery . I stopped them a couple of weeks into January.

Then I started getting shortness of breath - or SOB as those medical peeps call it - very appropriate. I chalked it up to recovery. But I kept getting shorter and shorter of breath. In February I started getting chest or lung pains which I chalked up to sleeping in the wrong position. But one morning the pain was pretty severe so I called my adorable pulmonologist. He scheduled a CT scan. As I was being driven home from the scan by DAMN BRIAN, I received 3 phone calls - from the radiologist, from my pulmonologist, and from the pulmonologist's assistant. They all said, turn around and go immediately to the ER. Third time's a charm? (And yippee - met deductible again!)

We have a hospital that is like a spa. Fountains and pools with huge koi, waterfalls, incredible gardens, phenomenal original artwork, and even fantastic food with wine or beer with dinner. And they have the good drugs. So it was back to Lovenox and Warfarin with a dash of Dilaudid for dessert. The odd thing is that I've never felt like this was life-threatening. During the second 'spa' stay the hospitalist came in and asked if I had an advance directive. I told him I couldn't remember. He told me that I need to attend to it right now! Right now! He told me that I had waited too long to come in and that I had enlarged my heart because I made it work ever-so-much harder as it overcompensated for the clotting. However, I knew I wasn't going to die or even be incapacitated. The next day the hospitalist came in and told me that he had been up the night before worried about me because I hadn't provided the advance directive. If I had been a properly paranoid patient that would have totally freaked me out. And really? He didn't have anything more important to worry about and lose sleep over?

So it appears that BabyHead was not who was throwing the clots with such accurate aim. So I'm with you LionsPride - on blood thinners forever and ever. High five!

I have no problems flying and if it's a long flight I just wear compression stockings and do foot/leg rotations and flexings. I'm also not a big drinker of liquids and I'm tied to my computer most of the time.

What method are you using to have you blood thinness/thickness tested? The first time around I was doing blood draws and had to wait a whole day for results. What a freaking pain. After the second go-round I started going to a Coumadin clinic where they do a simple finger p.r.i.c.k. (I guess that's a no-no word and shows up as *****) and have the results instantly. Recently a friend told me they make home test machines. Now THAT seems the way to go. He said they cost around $600-$800 which I would think any insurance company would be more than happy to pay for since we will have to be monitored for life. It would pay for itself in a very short period of time.

I'm so, so glad you're doing fine and that you have a brand new job. Sort of a rollercoaster of a ride this last week, yes?

kathy

quote:

I'm also not a big drinker of liquids

Has it been discussed that this might be a part of the problem? All the research I have done indicates that lack of proper hydration or dehydration is or could be an issue in the development of thrombophlebitis. One of the cases I was involved in involved a man who drank a bottle of wine and fell asleep, with his leg pinned against an airplane bulwark on an 18 hour flight. He did not have a J Pouch, but dehydration was determined to have been a factor in his development of thrombophlebitis, which turned out to be a one-time event for him, which he survived.

I have never had a clotting issue, but I recall showing up dehydrated for a blood drawing. The tech knew I was dehydrated, and she had extreme difficulty drawing my blood. She told me to sip water after midnight before future blood tests if I dehydrated quickly because of the J Pouch - which I do.

I feel like Casandra here (the Greek who kept predicting doom and nobody listened to)...Hubby had an 'alert' about 10 yrs ago...came home after a day at the office (mid summer, heat wave) with a horrible headache, sweating, irritable and snapish (fine, his usual except for the sweating and headache)...Hubby never sweats, does not drink water (nick-name the Camel) and walks about a block a day...to and from the car and takes the elevator up from the parking lot at work...
He hit the bed early that night and I had his family stay on til 2am...in the morning I gave him 3 choices...To drink a litre of water/juice, to drive to ER or to call an ambulance...he drank. I spoke to a cardiologist who told me that he had been severly dehydrated (the blood does thicken when dehydrated and creates more clots etc)...he drank for about 3 months after that...then went back to the old ways...now 10yrs later he had a full blown infarctus...the cardiologist said that it was mostly due to lack of activity, hydration, not enough sleep and too much stress (me!)...
He is also on thinners (they call them antiaglutinants here...same thing I think) for life plus the rest of the stuff...we could have avoided all of this if he had done before what he is finally doing now...walking, drinking water and getting enough sleep.
'nuff said
Sharon

I'm not dehydrated. I just don't drink as much fluids as other people - coloned or not. None of my doctors have said the PE's are the result of not drinking enough fluids. I also don't drink alcohol which would cause some amount of dehydration.

I drink when I'm thirsty. And I always drink Vitalyte with my water.

kathy

You kind of hit the nail on the head Sharon. I'm trying to get away from the 'what-ifs' but it's hard. The reality is had I walked more, had I focused more on treating my pouch at the root cause instead of treating symptoms and had I hydrated more I might have been able to avoid this risk. But I don't know that for sure, and even if I did, it's done. All I can do now is learn from it and control what i do going forward.

Hey you! Anonymous person reading this! Do yourself a favor. Go take a walk and drink a glass of water.

Kathy, hydration is definitely a major contribution to DVTs et all. If you're only drinking when you're thirsty it's probably not enough. It's a blood volume issue, the more fluid the better, even on the blood thinners.

Hey Lion,

So sorry you are having a rough time. Thinking of you!

quote:

Most of the time I can't tell if there's an actual issue or if I'm THINKING it's an issue and now THAT's an issue...does that make sense? I dislike it.

YES. I would say this is definitely me. I dislike it as well. :/

Hello Lion,
Wow! I'm glad you are doing better.

I'm in Chicago now, my daughter had another test yesterday. Sent you a pm.