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Lightwarrior
06-20-2010, 12:03 PM
I have spent the last week in hospitals with my oldest grandson Dominic, who has lived with me since his birth 18 years ago just had a clot that extended from his calf to his femoral area.gold us

The caper started about two weeks ago when he complained of calf pain after playing basketball, i took him to emergency room and they told us he had a partial rupture of his achilles tendon and should stay off his foot, gave him a pair of crutches..

Last Sunday he his complaing that his calf really hurts much worse and that his leg goes numb as soon as he sits on the toilet. (that got my attention). They did an ultrasound and found a huge clot, they tried to lyse the clot in interventional radiology and were unsuccesful so we went by ambulance to Banner Good Samaritan hospital in Phoenix. The nurses there were wonderful and let me stay in his room on a cot. I lived out of one little duffel bag all week.

They were able to lyse the clot and put in a filter, we got home late last night and I'm giving him high dose lovenox injections, coumadin and getting him into the local coumadin clinic on Monday. While we were there they did all sorts of genetic testing, the results aren't back yet since he is young to have such an extensive clot and my grand-daughter Desiree had a clot last year after a broken ankle (much smaller), She was 15 at the time, his Godmother who is my childrens fathers sister has had a problem with clots since she was 22.

I don't think he has Wegeners but I am curious about another auto-immune type of disease involvment. I'm going to ask for an MRI on Monday also of his lower leg since the interventional radilogist in Phoenix told me that his lower leg was really "tight" inside. Interestingly enough, he never had diminished pulses, redness, heat or swelling in his leg.

He was pretty scared and so was I especially when the ICU docs here told me to get him to a tertiary care center (Good Sams is) and the hospitalist who admitted him thought sending him home on coumadin, no filter and no further intevention would probably be okay. I had two intensivists pushing hard, myself and the case managers to make the transfer happen. I fear for John Q public

The bright side beyond him living through it is that his more spiritual side re-appeared and he now wants to go into the medical field, he has been sort of lost not knowing which direction to go. I got a whole week of one on one time time with him. Whenever he was small and things were challenging I always told him that we were having a great adventure to make the challenge seem like fun. So I told him we were naming this adventure The Great Clotting Caper.

I've been offline and out of touch for the last week so I have some catching up to do.

pberggren1
06-20-2010, 02:17 PM
Lightwarrior:

I hope Dominic is doing OK now and gets all the medical treatment he needs. He is very blessed to have you as a Grandmother.

Sangye
06-21-2010, 12:51 AM
I'm so glad they found that clot and Dominic is doing well. He must have a genetic factor. Did they test Desiree?

On the 3rd day after I got dx'ed with Wegs (lungs massively hemorrhaging) I developed bilateral leg clots. Nothing showed on the US and I was sent home and told to walk around. My calves were in tetany and walking or standing made me nauseous and faint. I was in horrific shape from the Wegs so they thought it was just that. Within 3 weeks I couldn't breathe (worse from the already severe difficulty!) and we found both my legs and both lungs were packed with clots. Like Dominic, the largest ran from my calf to the top of my thigh. Thankfully my pulmy (not a Wegs doc) didn't put a filter in. It's contraindicated with Wegs, but he didn't know that--good gut feeling.

I also never had any swelling, redness, heat, vein tenderness, and my pulses were palpable. Even the first leg US was normal. I was on 1,000 mg IV solumedrol (equiv 1,560 mg oral pred) and was ambulatory when I got the clots. The day we discovered them, my pulse ox (at high altitude) was 100%. Go figure.

I have a partial gene (heterozygous) for Factor V/Leiden which alone would only make me slightly more prone to clots than a regular person. But the combo of Wegs + clots + pulmonary emboli + Factor V requires me to stay on coumadin for life. Wegs makes us 23% more likely to develop clots.

Thanks for being there for Dominic. He's so fortunate to have you in his life. I hope you're doing okay and that it didn't wear you out.

Col 23
06-21-2010, 01:25 AM
Hi Lightwarrior, how wonderful that your were there for Dominic and he has got through that one.
Just incredible what your family have been through.
Thinking of you
Col 23

Lightwarrior
06-21-2010, 01:19 PM
Sangye, Factor V/Leiden is one of the tests they ran on him. I don't know the results, Desiree was not tested at the time because she had the broken ankle a few weeks before. I will get her tested now. I'm so glad that he has the sense to tell me when he thinks he is in trouble.

Lightwarrior
06-21-2010, 01:20 PM
Lightwarrior:

I hope Dominic is doing OK now and gets all the medical treatment he needs. He is very blessed to have you as a Grandmother.

I'm the blessed one, but thank you.

Lightwarrior
06-21-2010, 01:20 PM
Thanks for the support Col 23