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Monday, May 18, 2009

AVM News and Me Too...

not me... another form of AVM.

Latest Medical Report 13 May 2009

See below.

My medical treatment is now only a daily tablet of low dose aspirin.

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The recent CT of the abdomen and pelvis (20/3/09) demonstrates that the lesion related to the left iliac arterial and venous system is a pelvic arteriovenous malformation. This is a congenital lesion that given this man's duplicated renal system (left-sided !VC), represents congenital variant in his venous anatomy.
The AVM is an incidental finding. There are real risks related to treating the AVM related to embolisation, both locally including to the sciatic nerve and distally to the peripheral arterial tree. At the moment there appear to be few benefits in treating the AVM. Mr Fry is asymptomatic and there is no evidence of distal embolus or circulatory compromise. The AVM in itself does not represent a problem as a space occupying lesion.
At this stage as the risks of treatment outweigh the potential benefits I believe we should adopt a wait and see approach before we intervene in treating the AVM looking for evidence of local symptoms or distal embolisation.
The second problem for this man is his chronic aortic dissection. This is stable. The only ongoing potential clinical problem would be aneurysmal degeneration of the false lumen. This can be well monitored with yearly imaging. Similarly, yearly imaging would monitor the AVM. As such a yearly angio CT looking at both the abdominal aorta and the left-sided pelvic AVM would be reasonable. I have given Mr Fry a form for his next imaging.
The only other issue for this man is the resolving DVT in his left leg. As I have mentioned in my previous letter, given the fact that the thrombus has essentially resolved and the d.dima level is normal, it would be reasonable for this man to manage his venous thromboembolism risk with long term low dose Aspirin rather than Warfarin therapy. Mr Fry has a pair of surgical compression stockings. At this stage he should wear these for symptomatic relief. From my point of view I look forward to seeing this man again in one year.
DAVID HARDMAN

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and of course...

Happy, no matter what!





Hey Friends, Family and/or Prayer Warriors!

As always I want to say how much it means to me to have so many of your prayers! I am very blessed and that is what helps get me through my work days, my procedures, the bleeds - everything I endure! There is always that darned pain! Hmmm... I guess I should start w/the latest news and go backwards? I'll probably jump around and confuse everyone!

At the end of my work day Friday I was soooo happy! I just could not believe another week had gone by and I've got TWO DAYS to spend with Hanz and Mark! (Like Mark says, notice the pecking order)! My baby Hanz is so adorable and unbelievably cute! Such a winning personality! I was showing one of my friends @ the main office Hanz' photo and she could not believe when I told her that he drags that duck that mom gave him for Easter everywhere! Hanz grabs the duck, looks @ me and then starts running around the house with it, so I'll chase him! Most times, he's too quick, so he'll wait for me to almost catch up to him, before he starts running off again! I can only go "round the dining room, through one bedroom and the hall" about 5 times before I just poop out! I tell Hanz, "Mommie is too told for that"!

Oh! Back to my stuff! Well, we were up late Friday night, so I was waking up about 8:30 am on Saturday. Soon as my eyes opened up, my first thought was, that I would go get Hanz and bring him back to bed! My neck felt wet, so when my hand touched that area, I could pretty much tell I would be seeing blood. Yup! So as usual, I go, "Mark, I'm bleeding"! As usual, he goes, "You are kidding"! So we start the drill! I was dripping blood on the way to the bathroom, and I got my dressing off my face and I could see where it was bleeding from. Mark had just pointed out that area the night before when we was changing my dressing - saying that the very same area looked like it would be giving me trouble! Actually, soon as I removed the dressing and put some pressure on the area, it stopped bleeding very soon! Mark cleaned the area and redressed it and we just went about our business! I ran a couple of errands, then came home to spend more time w/my two favorite people! Later that night, I grabbed Hanz and he and I headed off for bed! Mark, I knew would be falling asleep on the couch, which he did. About 1am I heard or felt something, so I turned the bedside lamp on. I saw Hanz was up and looking @ something on the bed. Hanz had thrown up, poor baby! I looked @ it and apparently he had eated some gold threading from one of the cushions near where I had my Build a Bears, Saba and Rulon! Hanz is always wanting to get to Saba, and I'm sure that tassle w/gold threading caught his eye! Hanz is like having a toddler around 24/7! We have to watch him and everything he puts in his mouth! Course we had to change the sheets, but he ended up sleeping w/us that night all the way through for the first time!

Anyway, it's late and I'm gonna wrap this up soon! Here is a photo of the dinner my sister made for us on my birthday, May 1st! She made arroz con pollo (chicken w/rice) and mom made tortillas!

My next trip to Denver will be June 10, 11 and 12th! I need to be doing some exercises to make sure my mouth can open wider or the anesthesiologist is threatening me w/a trach! Yikes! As always, thank you all so much for all your love, support and prayers! Could not do this without you!

Don't forget! If you get a chance, check out my buddy Shalon's blog and website! She always has great stuff on there and she's adorable! You can get to her sites from mine!

Love to all!

Cyndi

Oh! I almost forgot to tell you about something that happened the other day @ work! I had gotten a call from a lady that had been there before w/a defendant. She is his caregiver and being in the medical field, she was interested in learning more about my avm. Her name is Julie Ann - and she came into the office again and surprised me w/a nice gift! She gave me a wooden box that opened up, and inside were a couple of things! One was a silver compact/pillbox and on the cover of that it says, "Being normal is over-rated"! There are also little slips of paper in that box, that Julie Ann says when I meet an obstacle in dealing w/my avm, I should write that on one of the papers and pray about it. She herself put some wooden letters on the cover of that wooden box that say, FAITH BOX and it also has a red heart on the front of that wooden box! Julie says she was so impressed with my great outlook on everything in dealing w/my avm, and she was moved by my blog and all I had written! Wasn't that sweet of her to come by and tell me all this! She is really nice and wants to help me in any way she can! I tell her that is one of the reasons I have this blog - to help people know what someone w/an avm goes through on a daily basis! So that more people can understand what having an avm is all about!

ain't she a hoot... from
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I don't know why... but I have a real thing for Led Zeppelin. I guess it is from having a brain AVM.... :-)

Yes for those who are just joining us... I have a brain AVM. It first showed it self in 1999 (i think) with a bleed.. from there I had Gamma-knife surgery... I was told it was goan... I had regular MRI's every 6 months and then every year. (time flew by) Until summer 2004... when it popped! I was damn near killed... I have very little memory of the next 6 months. In fact I have very little memory since... I was fired from my job... I used to be a Manager at Nordic Products. (A Hot Tub Manufacture) I made an okay living... $54,600/yr. I was given SSI... to the tune of $1500 per month... after I deduct my medical insurance I get $1400... I, with my wife's help, have gone through my life savings... About $70,000. I don't know what's going to happen... but it ain't gonna be pleasant...

So excuse my idiot tendances as I try to get my ability to type back... and my ability to remember what happens one minute to the next... I would normally say "help me right here... but what would come of it.

Here have some youtube...



Dazed And Confused - Led Zeppelin (Video)






I don't know if this will save or not...
Well see ya.... later.

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