Life DOES go on after DVT
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This site is for people with DVT, seeking comfort and information from others who understand from personal experience.
 
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IBEW Tramp

IBEW Tramp


Posts : 2
Join date : 2012-09-21
Age : 68

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PostSubject: How I got here...   How I got here... Icon_minitimeSat Sep 22, 2012 1:01 pm

Up until Dec. of 2008 I made my living as a traveling electrician. I worked on large industrial projects all across the nation. My home base was located in the middle of the country and I traveled out from there, usually logging about 1000 miles a week, while also working up to 70 hours a week on the job. In August of 2003 I experienced a severe stomach bleed resulting in the loss of almost half my body's blood nearly killing me (brought on by anti-inflammatory drugs). In the hospital the doctors wanted to give me a transfusion but I resisted due to my low trust for the blood supply and chose to rebuild my own over the course of the next couple of months. They put me on iron and everything seemed to be doing ok, but from that point on I had extremely sore legs. In June of '08 I received a deep cut on the left wrist from a sharp piece of gear on a job and it didn't bleed. I was very surprised when I could look into the wound and see everything there without the blood. I had pinched it closed immediately and when I got to the clinic to have it stitched up the doctor also commented on the lack of blood.
In July of '08 I had come home for a weekend and while working in the yard doing some relatively light work I became very dizzy and short of breath and came into the house and collapsed on the couch. My wife insisted we go to the emergency room and she told the doctor she was afraid I'd had a heart attack. They ran some tests and weren't able to confirm a heart attack so they sent me home.The following Thanksgiving week I came home for the holiday and by then I was working on a job 350 miles from the house. My legs had been really hurting me and all any doctor would say was that I needed to do stretching exercises. Never did a single doctor mention the possibility that I might be dealing with DVT ...and they knew how much driving I did. From San Diego to Saint Louis, no one ever told me about this stuff! I had the best insurance money could buy and had been to doctors all over the country and not one of them caught this. I had just had a complete physical 2 months before! Anyway, when I got home for Thanksgiving my right calf was swollen and kinda purple and my left was almost as bad. I didn't say anything to my wife about it or she would not have let me return to the job. Instead on Sunday morning I got up and hobbled to the shower and dressed to get back on the road for the long drive back. I got back to my 5th wheel at about 11:00 p.m. and it was about 20 degrees out. I opened my truck door and it felt like someone had poured ice into my lungs. As I began to bring things into the trailer from the truck my chest began to hurt more and more and by about the 3rd trip to the truck I knew I was in trouble. As I stumbled toward the truck I knew I was about to pass out so I lunged forward so I wouldn't land face down in the snow and instead made it to the seat of the truck and my knees in the snow, where I lost consciousness. I was there for awhile and finally fought my way back to standing up and return to the warmth of my trailer.
I didn't sleep that night and in the morning (4:00a.m.) I gathered myself up to go to work (can't make money iffin you aren't on the job!). It took me 30 minutes to walk from the parking lot to my job trailer. It took another 30 minutes to climb the 90' up to the Turbine Deck where my crew was. At 9:00 a.m. we took our mourning coffee break and I made it down the stairs and back up the stairs again. By lunch I knew I'd never make it back up again, so I headed for the gate. A good friend and working buddy helped me out the gate by carrying my lunch pail for me. From there I went back to my 5th wheel to try and rest. On Tuesday I drove myself to a walk-in clinic close to where I was set up and told the doc I thought I might have Pneumonia so he did an x-ray of my chest. He said maybe it was pneumonia but wasn't sure. He suggest I go to the emergency room at the hospital across the street but I told him I couldn't leave my Jack Russell alone that long and I'd just drive back home (over 300 from where we were). So I went back to my trailer and rested another night. The next morning I got up and headed home with my dog. I got home about 2:00p.m. on Wednesday and almost as soon as I got home the doctor from the walk-in clinic called and wanted to know if I'd been to another doctor yet and said he had the x-ray looked at by a radiologist who said I needed a Cat scan with contrast done. I told him my appointment wasn't til Thursday.
Well, I went to my doctor on Thursday Dec. 4th and showed him my legs, which by then were about the size of elephant legs and told him my chest problems. Finally there was enough evidence of a real problem and he did not tell me to do stretching exercises again! affraid He did a ultra-sound on my legs and rushed me over to the local hospital. There they shoved a release form in my face and basically told me to sign or die. I signed. They installed a Trapeze IVC Filter and started me on Levonox and warfarin. Their report showed that my lugs were both 70% involved with clots and my legs were full from my pelvis to my ankles. I was the worst any of them had seen without being DOA. They said in retrospect my first episode was very likely long before my first trip to the hospital in July of '08 and before my physical.
That was almost 4 years ago and my legs are still sore all the time. I take 7 1/2 milligrams of warfarin a day and now I get to worry for the rest of my life if the filter will hold. They don't have a real terrific success rate. I was 52 years old when this happened and it ended a lucrative career for me. I haven't worked a day since. Exercise is very hard to get with my DVT and Peripheral Nueropathy.

Not everyone in my family has been so lucky. In Jan. of 2011, a 68 year old uncle on my mother's side died from DVT/PE. Now that I know what this stuff is, I can see it in my family lines and it's not pretty!
Thanks for this forum!
Roland
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Lwynn




Posts : 13
Join date : 2012-08-24

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PostSubject: Re: How I got here...   How I got here... Icon_minitimeSat Sep 22, 2012 11:14 pm

You have being through alot. Have you had any genetic testing?
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IBEW Tramp

IBEW Tramp


Posts : 2
Join date : 2012-09-21
Age : 68

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PostSubject: Re: How I got here...   How I got here... Icon_minitimeSun Sep 23, 2012 4:45 am

No I haven't Lwynn. When it first surfaced I was well insured and my primary care dr. had what seemed like endless blood tests done on me and nothing was confirmed. And I lost patience with the whole thing as I saw the blood test's costs grow into the thousands. But within 3 months of my main event the larger clinic my dr. worked for was shut down by the Medical Board for Medicare abuses. I was left to fend for myself along with a couple of hundred others including my wife and 82 year old father who is a heart patient also on warfarin. After trying one other dr. that didn't seem much interested in helping me with my condition, I finally decided I might as well just use a nurse practitioner. The great thing about her is she got me set up with home testing of my INR. I do it once a week and call in my numbers to the processing company and they automatically email my practitioner the results. If she wants me to make changes in my dose she just calls me. One thing about this that I really despise id that I am so tied to this condition. Not having to go to town to get lab done all the time is worth pricking my own finger! The records are kept in 4 separate locations, including the little machine I have at home and my personal log. I get instant results right there at the breakfast table!
They have been keeping my INR between 2.5 and 3.4.

As far as genetics goes, I'm pretty sure I was already in the danger zone from my mother's side. My grandmother and great grandmother had very bad leg circulation and couple with my traveling lifestyle, I think I created the perfect storm for myself. I also used tobacco (no more!) which does horrible things to the body.

It seems to me that health care in the U.S. is in a shambles (as bad as my legs!). Drs. don't seem to care anymore and they never communicate with each other. I'd like to see what Canadian healthcare is like. Nobody has ever told me about compression socks! Maybe they don't work in the south?
Roland
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Lwynn




Posts : 13
Join date : 2012-08-24

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PostSubject: Re: How I got here...   How I got here... Icon_minitimeSun Sep 23, 2012 12:07 pm

I am from Canada and compared to other countries we are fortunate. Our taxes are high however. All my medical visits are covered as were my compression stockings. I will say though it seems as though no one really knows much about this condition and you really have to be your own advocate and do your research. They gave me the wrong dose of Lovenex for the first 5 days. Didn't find this out until I went to the anticoagulation clinic.
I have being reading alot on the internet about people going to the US to get their veins cleared out. Likely you have read about it too. Google Stanford Hospital DVT. They clear out the old clots and put stents in to keep them open. The blood flow is improved but I would think they would have to wear stockings to get the blood back up to the heart. Their valves would likely be damaged?
I imagine it is very expensive but worth it to some if it works.
I am pretty sure Compression stocking would work for you no matter where you live! Up here I got a prescription from a doctor for them - they have to be 30 -40 mmHg. They cost me over 100.00 but I got it back from my Health Care plan. Up here even if you don't have coverage if you can get them 75 % covered if you go though a program called Aids to Daily Living. At least in Alberta.
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PostSubject: Re: How I got here...   How I got here... Icon_minitime

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