Is it normal for Doctors to tell you not to worry if you tell them you think you have an additional clot in a superficial vein?

[KellyInTexas]

While in the hospital last month with a DVT in arm, my leg started feeling like it was getting a clot. ( superficial vein.) The doctor said we are giving you Lovenox sub cutaneous injections. It's all we can do anyway, so it doesn't matter. Once released- about two days later- this bruise happened exactly where pain had been.

Is this what happens with superficial vein clots? You can see bruise is right on that vein. Vein was very swollen.

I likely was also having little micro clots hit through kidneys at same time. My INR dropped to 1.9 during this time. I told the doctor. He blamed the hospital beds being uncomfortable. In fairness to him I also told him I had small ovarian cysts 6 months prior. I told him perhaps that was culprit of pain. After release from hospital ( A few days later) I had my gyno ultrasound ovaries. There were no signs of cysts. My body had reabsorbed them. She feels likely micro clots hit kidneys.

My Doppler scan showed " no blood flow " in area of clot of arm where DVT was. Also showed " thrombo phlebitis."

I felt like I was clotting in lots of places...the top of my other thigh was aching and it started bruising...you can see it. They never administered an actual heparin drip. They never called in a hematologist. So many mistakes were made. I had to call in the director of nursing and work with her to get the doctor to listen to me. She was lovely. She was going to have to doctor go through some course work. ( he was going to lower my warfarin and Lovenox - lower than what I entered hospital with...)

[Hidden]

I am still learning about all of this myself. Today I posted a photo of a bruise I have but I completely missed one on my other leg that is way more painful. But I don't know if it is just a bruise or a clot. I do not remember hitting my leg. Keep pressing the doctors for answers. Sometimes I think it's all we can do and don't ignore it. If it doesn't feel right to you then get it checked and get a second opinion if necessary. I hope you feel better soon and I'm glad you are ok.

[KellyInTexas Administrator in reply to Hidden]

Of course it was a month ago- it's gone. It was there when I went to gyno. She said yes, it was a clot. I guess my question is :

My doc in hospital didn't care if there was a clot. H e said- we know you have a DVT- in arm that's why you are here. If you have a clot in leg- it's same treatment. Doesn't matter if you now also have one in leg- or micro clots in kidney- as long as pain in kidneys have subsided ( which pain had subsided) and urine was clear( which it was.)

I'm just not sure if this is normal?

I was never given labs other than INR numbers...

[Hidden in reply to KellyInTexas]

I would think if they are treating you for clots then they are correct in saying it doesn't matter where they are. But if you started getting multiple clots system wide then isn't that the catastrophic kind? It's does matter, if you report problems, they should pay attention to where the clots are I would think. Let's wait and see what the UK people on here have to say because they seem to have better answers since they get better care for Hughes where they are. I wouldn't take the hospital doctors comments as him not caring though. It sounds like he wanted to reassure you that you were ok, and that they were treating you with the proper medication. As for never seeing labs, you can always request to see your labs. You have a right to all of your information any time. Sometimes you will be charged a small fee for making copies but they have to show you the labs if you ask, it is the law. Once you get the labs then you can take it to another doctor for a second opinion if you aren't satisfied with their answers. Plus even if the answers are the same from a different doctor sometimes a different doctor is just better at explaining things and at making you feel at ease or like you are being taken seriously.

[KellyInTexas Administrator]

Well, CAPS is always a concern, it did cross my mind but I was no where sick enough. I think three organs have to be involved. I over all felt well. My admitting doctor ( I chose to stay in our small town as our teen aged son was in final exam week) was worried about CAPS and wanted to start IVIG infusions and wanted me in for " three midnights."

Next hospitalist called my San Antonio doctor ( heme) and he was confused and though it was an older DVT that had not fully resolved. He did not know that I had had more than one scan since showing no DVT at all- ( totally resolved ) and totally normal D- Dimer.

This is where all confusion happened. This is why I asked for a hematologist to please be brought in. I was told she would be brought in- this is why I be used on our small town when a doctor who diagnosed clot insisted on ambulance to San Antonio... but the hematologist- who is NOT an employee of the hospital, but a sub contractor- has a " contract" chose not to come to be my hematologist...

My internist in San Antonio said never again go to our small town ( Kerrville Texas) hospital. The director of nursing was very nice but said the same thing.

Yes. I'm wondering what the protocol is.

I was just in Princeton NEw Jersey and had a minor glitch- the care was far superior. San Antonio is a little behind also. Better than a small town, but not stellar.

[Hughes-Comrade]

I would think a doctor would show a little concern especially if it was something that could travel to the lung!

[KellyInTexas Administrator]

I don't think a clot in a superficial vein can embolize to lung, but if you are getting them in several locations at once ( even inside arch of foot of that same leg with superficial vein clot- you can see in photo) - and if DVT in arm was not allowing any blood flow- why not a heparin IV?

The main admin. Of nursing was brought up to answer my questions- but because she was not a hematologist she did not know. She agreed with me something seemed very wrong. That was just addressing the lowering of the medication... and no heparin drip. Again, they couldn't answer.

[Wittycjt]

Interesting, Kelly, but you always are! Can't wait to see what Hidden and MaryF have to say?

[KellyInTexas Administrator]

Yes. I'm hoping they can shed some light on Lovenox - vs - actual heparin IV drip. (?)

I'm being sent to a vascular surgeon tomorrow for evaluation on a few items regarding:

1. Chronic thrombophlebitis

2. Possibility of TOS ( thoracic outlet syndrome) - not likely - but heme in Princeton wants me evaluated- " wouldn't that be interesting" he said- if you have two things concurrently exacerbating the clotting in that arm. APS AND TOS. " just a rule out thing. Because I keep getting DVT's in that arm. He said surgery would be only option- not a bypass or stent if that's what is going on. I'm sure it's not what's going on. I can't be that unlucky, right?

But, hopefully I'll learn more about the thrombophlebitis issue. I was told by IV it leads to DVT's. Then I'll post something informative.

[Wittycjt in reply to KellyInTexas]

I still think that you should be injecting twice a day for better coverage, albeit they say your in range I don't think the range is holding you for the whole twenty four hours?

[KellyInTexas Administrator]

I was not a candidate for Lovenox. I was at the highest range possible and reclotted on April first. I felt horrible on the lovenox. I had a return of migraines twice a week. I emailed Dr Jordan at the London Lupus clinic this specific question. 12 hrs versus 24 hours. She put the question to the entire team. The answer was the same as my heme said. As long as the anti xa factor is drawn 4 hours after injection, and the formulation is based on 24 hours mgs/ kgs it's fine.

The problem is I don't seem to be a great candidate for Coumadin either...

I was giving myself 70 mg of Lovenox if my INR fell below 3 during acute phase of DVT. I normally give 45 mg if I fall below 2.5

[KellyInTexas Administrator in reply to KellyInTexas]

But I do feel better on Coumadin and I have more control. I can check INR and at least Bridge when needed and control migraines this way.

[Wittycjt in reply to KellyInTexas]

That's where I'm confused. If it doesn't work for you, how can it be used for bridging?

[KellyInTexas Administrator in reply to Wittycjt]

Sorry, yes. It's only used for bridging. I think now I probably could use it every 12 hours if I only inject 45 mg. If I inject the 70 then probably only 24?

I'll ask . I'm not sure if it's based right now on 1 or1.5 mg/kg for bridging. But again, no one ( including the Hughes team ) is concerned about that since my levels were ok- in fact on the high side of normal range consistently.

[KellyInTexas Administrator]

Yay for genie in a bottle! I'll use my remaining two wisely...

[Hidden]

I had an occlusive clot in a superficial vein when I went in for a knee replacement. It was in the non surgical leg. They did nothing and told me I was already on blood thinners. That was before diagnosing me with APS. would they have treated it differently if I had the APS diagnosis?

[Wittycjt in reply to Hidden]

Only God knows!