A big thanks to Oakley for posting the DVT question a while back

last year

last modified: last year

I can't find the thread to post on as I wanted to put it there for a follow up, but I really want to thank Oakley for posting the question if she might have a DVT after injuring herself and also all that posted on the thread with what to look for. I didn't participate in the thread, but I did read it and thanks to that thread I immediately identified that I had a blood clot in my arm as I had all the symptoms mentioned. Had I not read the thread I doubt I would have gotten medical treatment as fast as I did.

I went to urgent care as soon as I realized it. They sent me to the ER. The reason for urgent care was because that is what they had in the hospital where I was at the time - out of the country and visiting the hospitals palliative care unit. I ended up in the ER's hospital with a catheter heparin drip to resolve the DVT which was fairly large going from my clavicle to my elbow. Although there went a few days between that treatment and the ER visits where I was started on heparin. I'm still reeling a bit from the experience along with everything else that unfortunately transpired on my trip (step dad and dad both passed away) and I managed to also get the flu, along with an allergic reaction to the contrast used to check that my lungs were clear. I'm now waiting on doctor's appointments to figure out the cause of my DVT as it is not related to flying. I did get TOS ruled out after a 4th Ultrasound that shows the clot is all gone now and no residue, There is a narrowing in the area, but it is not large enough to need a rib removed and should have performed fine. They are monitoring it to see if they need to use a balloon to make it larger. So now waiting on neurologist and Hematologist appointments and waiting is not my strong suit.

Oh and thankfully I don't have to deal with insurance issues thanks to being a citizen of the country where it happened and if you are a citizen and living in the US you pay the same as a citizen and resident of the country for emergency care. So in all my cost was $25 for the Urgent care, ER visits, hospital stay, all tests and imaging done etc. + $250 for my 30 days worth of heparin shots from the pharmacy after I was released from the hospital which I could send off and create a claim for with my insurance, but I have decided it is not worth the hassle to me at this point.

I think I still have some PTSD at this point although at the time with so much going on it didn't register and maybe it is the waiting to figure out the reason that is causing this to surface.

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DLM2000-GW

last year

last modified: last year

Lena are you being tested for genetic anomalies? Factor V Leiden is associated with clotting (and in more rare occasions, non-clotting/bleeding) disorders. Not sure why it didn't occur to ask you about this before, while you were in the hospital.

editing to add - I know about this because daughter of a friend was hospitalized and almost died from a clot due to a narrowing in a major vein (just the way her body is - kind of like your rib situation?) that created a setting for a clot to form. Other contributing factors were 1) birth control hormones and 2) recent Covid diagnosis. Let me know if you want more info - turns out my friend also carries the mutation but has the bleeding variation.

Comments (43)

deegw
last year
last modified: last year
Oh my goodness, what an ordeal. And I'm so sorry that you had deaths in your family on top of your health issues.

Thank you for updating us. Hopefully, the rest of your year will be less fraught.
lyfia thanked deegw
Ida
last year
I'm SO glad that you recognized the signs and sought treatment, which may very well have saved your life! What an ordeal indeed. I'm so sorry for the loss of your dad and stepfather, and sorry that you've had the flu on top of everything. I wish you peace and strength as you recover from all of this. All the very best to you!
lyfia thanked Ida
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Jilly
last year
Lyfia, my gosh … I’m so sorry for all you’ve endured. My heart hurt reading all that has happened to you. :(

My deepest condolences on the loss of your father and stepfather.

I’m so glad Oak started that thread and you saw it.

All my hugs and hopes that your health improves, and that you can find moments of peace among the throes of grief.

Please do keep us updated when you can. ❤️
lyfia thanked Jilly
maddielee
last year
Thank heavens you recognized the need to get medical help right away.

So very sorry for your losses.

I hope Oakley sees this thread, she did good with that post.
lyfia thanked maddielee
Funkyart
last year
Boy, you have been through it! I am sorry for your losses but so glad that you were able to recognize this signs of a DVT and get treatment!

I am sure they will test you for clotting diseases ... I have Factor V Leiden which was determined after my brother had a DVT in his early 30s. He was determined to have the disease and since it is passed on genetically, it was recommended that we all test (especially those of us who were on BC at the time). There are other similar conditions like Factor V Leiden that can increase the risk of clotting.

I do hope you get answers soon ... HUGS
lyfia thanked Funkyart
lyfia
Original Author
last year
last modified: last year
Thanks all of you for the kind words.

I really do hope Oakley sees this as I know for sure I wouldn't have gone to the doctor at all had I not read that thread. I want her to know that it really helped someone. I also appreciate all that posted what to look for as that is what made me realize what it was. But without finding the thread I don't remember who it was.

Edited to add: I really do hope it turns out to be some sort of clotting disease and it will be easy to manage vs. some of the alternatives. I do know I was tested for some of it after pregnancy losses so I'm guessing it isn't one of the common ones if it is.
Kswl
last year
Thankful you were able to recognize this problem and get treatment, Lyfia. I’m so sorry for your loss and hope you are able to resolve the underlying issue that led to your dvt.
mtnrdredux_gw
last year
last modified: last year
I am so very sorry for your losses and your own health scare. Let's hope it is resolved quickly and it a best-case situation. DVT is nothing to mess around with.
Tina Marie
last year
Lyfia, I am so sorry for the loss of your father and step-father. Glad you realized what was going on and got help soon for the DVT! Hope you have answers soon.
eld6161
last year
last modified: last year
Oh my. So grateful. Our community here is awesome.

My condolences for your losses.
lyfia thanked eld6161
Sandplum1
last year
last modified: last year
Oakley's November 22 post was titled Have you had a Charley Horse?
lyfia thanked Sandplum1
ajuju
last year
Lyfia - You have been through so much! My condolences for your losses, and prayers for your swift and complete recovery.
lyfia thanked ajuju
lyfia
Original Author
last year
last modified: last year
Thank you all so much! I noticed after finding the other thread that I did manage to catch several of you who posted the info that lead me to seek medical help. Forever grateful for ya'lls contributions.

@Sandplum1 - finally found it using the thread name and Google - not through Houzz search.

I posted on the original thread and will take this down later as all who needed thanking are on the other thread. I'm so grateful for this board and the wealth of knowledge shared by everyone here.
salonva
last year
I am so sorry for all you've gone through. As far as recognizing what was happening and seeking appropriate attention- this is when the internet ( and houzz) is just amazing.
lyfia thanked salonva
texanjana
last year
Lyfia, what an ordeal you have been through. I am so glad you got checked out and are on the road to recovery. I am so sorry about the loss of your dad and stepdad. Sending you comforting thoughts. Take care of yourself.
lyfia thanked texanjana
bbstx
last year
@Oakley tagging you.
lyfia thanked bbstx
nini804
last year
i am ao happy you went to the Dr and got treated! How scary. Hope your recovery continues to go well. I am so sorry for the loss of your dad and stepfather, and will keep you in my prayers.
lyfia thanked nini804
lizbeth-gardener
last year
Lyfia, you've had quite a ride and am so glad you gleaned enough info from the other thread to realize you needed medical attention. I'm so sorry for the loss of your father and stepfather and sending wishes for continued recovery and better days ahead.
lyfia thanked lizbeth-gardener
OutsidePlaying
last year
Wow, what a great post. I’m very sorry for your losses. When this community shares and learns from one another, it really is nice to hear about the value these discussions can have, especially when someone’s life is impacted.
lyfia thanked OutsidePlaying
roarah
last year
last modified: last year
Are you still on anticougulants? After a unprovoked clot usually we stay on one for a long while if not indefinitely. I will need to take aspirin with warfarin for the rest of my life. Ask for a full clotting genetic panel and ask if an antiphospholipid antibody panel was run.

I had my stroke away from home and understand PTSD well. EMDR saved my quality of life. Treating our PTSD is as important as treating clotting.

I am thankfull you are improving and quickly got the proper treatments. Take care!
lyfia thanked roarah
rubyclaire
last year
Let me join in saying how glad I am you took action based on information shared here and are healing ❤️‍🩹. Truly an amazing community.

Take care and I hope you continue to heal physically and emotionally from your ordeal.
lyfia thanked rubyclaire
hcbm
last year
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How wonderful that a post here saved your life. This is such a kind and generous community. My deepest condolences for the loss of both your father and step-father. May you heal well and fast.

edited
lyfia thanked hcbm
lascatx
last year
I'm so sorry for the family losses, but very glad to hear you learned something here that prevented another. Sounds like quite an ordeal though. Hope the healing is smooth, swift and complete.
lyfia thanked lascatx
ilikefriday
last year
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This is such a crazy series of events but it shows the power of the internet and how it grows community, internet community is important. I hope Oakley is ok and that she sees this. I am sorry that you have had to experience all of it.
lyfia thanked ilikefriday
pudgeder
last year
Oh Lyfia! What an ordeal indeed. I wish you a safe recovery and healing.
lyfia thanked pudgeder
yeonassky
last year
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Lyfia so sorry for the loss of your father and stepfather.

I'm so very glad for you that you got the right information at the right time. Sending good thoughts for a good complete recovery.
lyfia thanked yeonassky
Arapaho-Rd
last year
Lyfia, what a time you've had. I'm so sorry for the passing of your father and stepfather. May you get the answers. Information provided by the folks here is really wonderful and I'm glad it alerted you to get care.
lyfia thanked Arapaho-Rd
lyfia
Original Author
last year
last modified: last year
A heartfelt thank you to all of you for the condolences and well wishes. Looks like I have some initial answers as to what may be going on. Unfortunately it seems like I have a lot of other things not working right at the moment that all have overlapping symptoms so I guess I've gotten a triple whammy in some symptoms which now all make sense and one that still is random and unexplained.

My doc did some blood tests related to other symptoms I've been experiencing so I asked while I anyways had to travel to get labwork done if there was anything that could be done to pre-empt some of the tests the Hematologist would do. So last week I had about 15 vials of blood taken and now I have an answer for the DVT. Looks like I've added another autoimmune condition potentially as the lupus anticoagulant test came back positive so it is likely that is the cause. Still waiting to see the Hematologist. From my reading it appears it is not Lupus but rather a blood clot autoimmune issue that is common with those that have lupus. Here's a link in case it would help someone else in the future.

https://my.clevelandclinic.org/health/diseases/23430-lupus-anticoagulant

ETA: I currently take Xarelto after finishing a month of heparin shots. No idea if that is the meds I'll continue or something else going forward.
Jilly
last year
Lyfia, thank you for sharing your update, and that link.

I’m so sorry for these new developments. I hope more answers come soon and healing and recovery can occur. You are due for good news, you’ve been through so much.

Hugs ❤️
lyfia thanked Jilly
lascatx
last year
Having another condition to monitor and deal with is not the best, but answers are better than guesses and worries. Hope you will get more and everything will be treatable and manageable.
lyfia thanked lascatx
Funkyart
last year
last modified: last year
Yes, it does help to have some answers-- but sorry you are working through other conditions.

I didn't see a hematologist until fairly recently (4 yr ago) compared to when I was diagnosed 25+ yr ago). I found the hematologist was THE most helpful and most informative of all the drs I have seen. I hope you have the same experience. She spent almost an hour with me-- and I had no issues other than the diagnosis. I needed a clearance for surgery-- thought it would be a quick 5 min but she really gave me her attention!

My brother and one of my niece's both take Xarelto and will for life. My brother was on coumadin first (as was my dad) but moved to Xarelto-- he likes it much more so hopefully you can stick with it for as long as needed.

Best wishes for you, Lyfia!

(ETA - I guess I should share that I have Factor V Leiden.. as do a number of my siblings/nieces/nephews. Clearly a different diagnosis but I think the treatment for DVT is the same no matter the underlying condition. Of course your doctor will share a treatment plan. )
lyfia thanked Funkyart
Allison0704
last year
I'm so glad you recognized the symptoms and were proactive. My condolensces on the loss of your father and stepfather. As far as all the tests, knowing is better than not knowing and they are being thorough with your medical care.
lyfia thanked Allison0704
SEA SEA
last year
Goodness. I'm really sorry for all you've been through, and the more that is to come with shuffling through the medical process. My condolences to you on the loss of your father and stepfather.

I agree that it's a wonderful thing having all these minds work together to share knowledge and experiences. I hope there is a reasonable treatment for you.

I'm a bit concerned that Oakley has not chimed in. I hope she is alright and just taking a break or on a nice vacation.
lyfia thanked SEA SEA
OllieJane
last year
Oakley is a mystery to me. LOL
lyfia thanked OllieJane
DLM2000-GW
last year
As are you OllieJane. As are you.

oh yeah I forgot the part that makes it all ok. LOL
lyfia thanked DLM2000-GW
Oakley
last year
Sorry, I just now saw the topic. Mystery: .."something that is difficult or impossible to understand or explain. " Thanks, I needed that, especially today.

Lyfia, for sure you should have some PTS after everything you've been through. Did the doctor say you've had Lupus all this time and the DTB is a symptom? I vaguely remember my SIL having the same type in an arm and was in the hospital for a few days on meds.

Thankfully all I had was a charley horse. Please keep us informed, and I'm so glad you had other tests done as well.

It was just a couple of months ago when DH had an ultrasound in the neck where he had cancer. He was fine except it was the oncologist who found a "significantly clogged carotid artery. No symptoms at all.
lyfia thanked Oakley
OllieJane
last year
last modified: last year
I thought you’d like that Oakley LOL We Okies have a lot in common. Nothing wrong with being a mystery.
lyfia thanked OllieJane
lyfia
Original Author
last year
Thank you all as this really has turned into an ordeal on all fronts. We still haven't been able to bury my stepdad due to my mom having Alzheimer's and he was her Power of Attorney and are now waiting on the court to handle our application for them to assign my friend to handle some of this for my mom. I think we finally found a work around to do the burial and hoping to hear good news on that front soon. I won't be traveling back for it until I feel my medical issues are at least known.

I finally have an appointment with the Hematologist on Monday. Hoping to find out more what it means and I hope I have the same experience as you Funky. As of now my understanding is that I don't have Lupus. I don't have any of the Lupus symptoms, but it could be early and this is the first sign. The test is called Lupus Anticoagulant and it is common that those that have Lupus also have this, but from my reading it doesn't mean all that have Lupus have this or all that test positive for it have Lupus. I'm hoping I for now fall in the latter category.
Funkyart
last year
Sending best wishes-- and yes, I hope you have a great experience with the hematologist too and that he/she answers all your questions/fears.
lyfia thanked Funkyart
lyfia
Original Author
last year
Turns out I'm back to square one with no answers as the tests are invalid since I'm taking a blood thinner. So have to wait out 3 months first before any testing can be done and also until after a re-visit with the vascular surgeon.
Jilly
last year
Lyfia, how frustrating, I’m so sorry. :(
lyfia thanked Jilly
Allison0704
last year
That is frustrating, Lyfia.
lyfia thanked Allison0704

A big thanks to Oakley for posting the DVT question a while back

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