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 Hello from San Francisco!

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MoeJeau



Posts : 5
Join date : 2009-04-24
Location : Vallejo, CA

PostSubject: Hello from San Francisco!   Tue Apr 28, 2009 3:07 pm

Well I seem to be a newbie in more than one way, new to the site as well as new to the world of DVT aftermath…. My DVT adventure began at the end of February 2009, I came home from a training session barely able to walk, I thought that I must have pulled something or twisted wrong so I had my wife take a look and she agreed that my leg was a little swollen. I elevated my leg for the rest of the evening and didn’t think anything of it. I am a 36 year old, active and healthy person that only gets sick maybe once every couple of years. I am a little accident prone but I heal quickly and thought that it would be better in the morning.

Boy was I wrong with that one, when I woke up my left leg was swollen to twice its normal size, my left thigh was close to 40 inches round and my calf was pretty much the same size as my ankle. My leg was red and hot and we knew that this was not normal which called for an early morning trip to the ER. That was probably the most painful experience I have ever been through, I have a very high tolerance for pain but the few hours that we sat in the waiting room were just about unbearable. As soon as a gurney became available I was rushed back, an EKG was done since my heart was pumping WAY too fast and the doctor came over to let us know that this was all because of a massive blood clot in my left leg. Not only was it the clot but I also had a Pulmonary Embolism as well.

I had been sick a few weeks earlier with a flu that was passed around the office and had this cough that I just couldn’t kick, it wasn’t something that I was worried about because a lot of us were walking around the office not able to kick this cough…. I’m guessing in my case it wasn’t because of the flu! They admitted me that morning and monitored my heart and lungs for several days. In addition for a couple of EKG’s a had a CT scan and an Echocardiogram. My heart was clear and strong and my lungs were clear, my heart rate was back down so it was time to go home.

They put me on Warfarin (3 mg) and injections of Lovenox for a couple of days. This is where we started the fun attempt to figure out why a healthy 36 year old man, with a clear and strong heart, clear lungs, good blood pressure, good blood sugar, good cholesterol and active came to the ER with a DVT. No recent travel, no recent trauma and the blood they drew while in the ER came back with multiple results that they could not use because they had drawn the blood after putting me on IV blood thinners. The results they came back with were full of false positives and we were looking at a few different causes.
1. It’s genetic! We came to realize that no, it’s not genetic at all!
2. It’s because of the inactivity when you were home with the flu! But no, I was active and walked around the house enough during that time that I was not inactive enough to have a clot form.
3. It’s because of a swollen lymph node that is very common when you are sick. Wrong again!

It took a month of hounding them to move towards a solution, this meant MRI’s, Ultrasounds, Lab work…. It was not until I started talking to the Interventional Radiology department that I was able to get any answers at all. I told them that I wanted to be as aggressive as possible but taking into consideration that I wanted to be safe as well. This all paid off when I was called by a vascular surgeon so he could explain what he wanted to do. Earlier this month I was scheduled for a tPA Infusion, this was the most informative doctors visit I ever had in regards to the DVT.

The doctor was extremely informative; I started to get used to these – no answer – answers to my questions. This doctor explained exactly what was going on and why it happened to a 36 year old healthy man! His explanation was May-Thurner syndrome. MTS was explained to both me and my wife and in order to solve this issue they inserted a catheter into my jugular right above my clavicle or color bone. That catheter went through my abdomen and into my left thigh where they put me on a 36 hour Heparin drip. After 48 hours in the Intensive Care Unit, a few chest x-rays and so on the catheter was removed. They were able to get remove or dissolve a majority of the clot but a small amount remained.

In order to provide me somewhat of a safety they inserted on IVC Filter to keep anything that may break loose from taking the path through my heart and into my lungs…a second time. It’s been a few weeks and the recovery is slow, I see small improvements everyday but have days where I know that I have pushed myself a little hard and paid the price for doing so. I’m wearing a knee high compression sock, and that helps a great deal with the swelling. I was told that it could take weeks before I see a drastic improvement. I know that this was not a guaranteed procedure and my leg may never return to what it once was. That’s the story of my life, since the age of 2 I have had a seizure disorder and know that there are certain things that I just cannot do. It sucks that this may limit those things even further but I’ve found a way to make it 34 years and if needed will find a way to make this work too.

It’s great to hear stories from people that have experienced a lot of the same things and from here I guess all I can say is – Hello from San Francisco!!! cheers
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dero
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Posts : 904
Join date : 2007-12-09
Age : 57
Location : Near Ottawa, Ontario Canada.

PostSubject: Re: Hello from San Francisco!   Tue Apr 28, 2009 4:35 pm

Hi MoeJeau,
Welcome to LADVT, glad you found the place, wish you did not need it but you are here now. You think when all of this is happening to you, you think WOW, what is this, that is happening to me and WHY is it happening to me...
Then you think, am I alone with this, I have never heard of this Deep Vein Thrombosis, then you find forums with (like you said) many other people that have experience a lot of the same things as you are presently. YES, that is how we can all help, because we understand what YOU are going through, the treatments, the setbacks in life, the ups and downs both physically and emotionally, but I can assure you, it DOES GET BETTER...
If you have questions, PLEASE ask them, we are here to help you pull through this experience.
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Kerenza



Posts : 5
Join date : 2009-04-27

PostSubject: Re: Hello from San Francisco!   Wed Apr 29, 2009 1:00 pm

Hi MoeJeau <waves from the UK>

As Dero says, talking to others who share similar experiences really does help to pull you through. I had my PE in december but sometimes it feels like yesterday.

Yup it does suck how we can be limited but it's definitely better than the alternative Smile

Karen
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MoeJeau



Posts : 5
Join date : 2009-04-24
Location : Vallejo, CA

PostSubject: Quality of life   Sun May 03, 2009 11:49 am

Went to the gym for the first time in months this week, it felt great to do something that I did before all of this happened! I am determined to get back to as many of the activities that were a normal part of my life as before but with the knowledge that I need to be a little more careful when doing some of them - I miss riding my longboard and when summer comes I want to give that another try.

Talking to some friends that have been dealing with challenges of their own I remembered that it is all about quality of life, if I can retain as much of my quality of life I can beat this. Of course beating this may be somewhat of an illusion since I know that this will always be a part of me. I have surgically implanted items that I will be reminded of every time I walk through a metal detector..... Can't wait to try and explain that one

One question that I do have and I'm not sure if anyone can provide an answer..... One of my hobbies is getting tattooed, does the presence of blood thinners make this hobby a concern? You bleed quite a bit when being tattooed No
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MoeJeau



Posts : 5
Join date : 2009-04-24
Location : Vallejo, CA

PostSubject: Re: Hello from San Francisco!   Sun May 03, 2009 12:56 pm

After a little research I have found the one area, one activity that I will not be able to go back to while on blood thinners.....

It's a lot like artists not doing business with people that are drunk, the fact that your on a blood thinner can make the ink run at the time. I'm sure you can find someone to do it anyway, or you can just not say anything but why pay good money for something that will or may not turn out they way that you want it as a result of a thinner.... Sad
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Hello from San Francisco!
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