This is me

Hi from Sunny South Africa!

I'm so thrilled to have found this forum to be able to share my story and my fears with people that understand what I'm going through, having gone through it too. So many people close to me do not always understand my fears and (I think) the danger involved with this condition. I'm reluctant to talk about it too because I don't want to seem like I'm constantly whining or self-absorbed. I've always been so healthy, so maybe its just that I'm not used to talking / worrying about my health.

In December 2006, I had a lot of swelling and pain in my right leg. The GP I went to see thought it was Cellulitis and put me on a course of antibiotics. After taking this medicine and still having the pain and swelling in my leg I went to the hospital as it was Christmas eve. The doctor on duty put me on a stronger dose of antibiotics for Cellulitis. In early January 2007 I was hospitalised when the Specialist sent me for a Doppler and I was diagnosed with a DVT behind my right knee. I tested negative for Factor V Leiden. I took Warfarin for 5 months - in May 2007 I went for another Doppler and was told that there were no further signs of Thrombosis and that I should stop taking Warfarin. I was thrilled!

In September 2007 I started getting chest pains and thought that I might have an infection / inflammation so went to the doctor the following morning when the pains did not go away. Again I was hospitalised - this time with a clot that shot into my lung. This time I tested positive for Factor V Leiden. I was told that I will have to take Warfarin for the rest of my life as I am now testing positive for this gene. (Strange that I tested negative the first time). It was a horrible experience and I battled to breathe. I stopped taking the pill (Triphasil) in January when I had the first clot and then (Finally!) stopped smoking when I was hospitalised with the clot in my lung - at least one good thing came of it

So here I am, still taking Warfarin and going for regular INR tests. I turned 37 in February. I think what scares me the most is that I do not have children yet - I so desperately want kids (with all my heart) - even just one if need be. I'm scared that this condition will prevent me from having kids.

Let me end it there for now before I continue to write pages and pages full. I look forward to reading your stories too.

Regards,
Gismo

Welcome to "Life After DVT" Gizmo, I'm glad you found it.
I do understand what you are saying about "this being the first time you worry about your health", I was the same. After going through the whole ordeal of the first few (three/four) months (at least for me), I have a different outlook on life, which is something that people that have not had DVT or PE don't understand, they look at you and see nothing wrong (physically) and still they know that you are a survivor of something that could had easily killed you and in an awkardly manner, ask you how you are .
"I'm alive and I'm walking" is usually my answer and I do get some funny looks sometimes, but it's true.
Some have it a lot worst, I know, I talk with some of them and I do understand that I was lucky, blessed or whatever you call it. That is why, I have to pick myself up and do what I can, since ((( I CAN.)))
It's a tough one to deal with,(physically and emmotionally) no denying it,
but for now we have to carry on!!!
I hope that you will find answers in this forum and if you have any litterature that you think may help others, post it, we can talk about it, I have noticed that the diagnose and threatments for DVT/PE varry enormously from country to country and yet, it's the same disease...

Thanks for the reply Dero. I have also recommended your site on "Stumbleupon" so hopefully more people stumble your site and recommend it to more people with the condition that will find it as useful and informative as the rest of us.

So true, I found it quite hard being off work for 2 weeks with both of my incidents too because there are so many people that do not realize just how dangerous the condition is - like my colleague that got rather annoyed to have to overexert herself when I was not at work. The nerve. ;-) Thing is, exactly as you've said, they do not see anything wrong with you physically. I felt guilty for being off work for so long for a while but realized soon enough that my life is so much more important than what other people think. Its amasing how much differently you view things after having a life-threatening event. I now see my career as exactly that, nothing more and I make a concerted effort to not get stressed about work issues anymore - I do my best at work and then I switch off when I go home.

So true, the diagnosis and treatment varies enormously and so do opinions too. Thus one does not always know who and what to believe. For instance, some tell you not to take certain meds while on Warfarin and another will say that you do not take it (aspirin for instance) every day of your life, only say when you have a very bad headache, so its ok to take it only then - if you really have to. I've picked up weight after giving up smoking - some say you can take appetite suppressants, and others say stay away as the ephedrine gives you heart palpitations and a no-no with PE. Who knows hey!

What I find most frustrating is that you need to ask the doctors all these questions - noone bothers to sit you down and tell you all you need to know. I would read something on the Internet and then ask my doctor about it when I see him again. That was my experience at least so I should not generalise.

I've tried to find information on the side-effects of being on Warfarin but all I can find is that you have a risk of bleeding excessively - although I've heard that there are more side-effects?

Hi Gismo,

Wow--I read your story (thank you so much for sharing it!!) and can relate to quite a bit... except the PE/lung part...so far, knock on wood. I find it amazing to think that after the lower leg dvt, that almost a year later, you had a lung clot!! I would have thought you would have been all clear. (I imagine it was from smoking still?) But still, what the heck?! Do we have dvt for life?

I've only just turned 41. I too was on the pill and smoked. A totally lethal combo. I just quit both. That's a lot of stress on the body all at once!

I just was diagnosed on Fri. with dvt--large clot from knee to ankle on right side. They were very worried of it traveling because I had it for 2 wks. by the time I came in. (I thought the calf pain was a pulled muscle.) So right now I'm doing the outpatient thing at the hospital... going for the daily bloodwork and injections in my belly... and of course have started Warfarin.

Anyhoo... just joined, so have to peruse this site and add my story to the rest. Hope to chat with you soon.

Take care,
Brenda

Hi Brenda

So nice to meet you and hear your story. Firstly congrats on giving up smoking and going cold turkey! I also followed that route and I think its the only way to go. My uncle (who is also on Warfarin) started chewing the Nicorette gums and is now hooked on that ;-) I am so thrilled to finally be off sigarettes and having the cravings out of my system. Its oh so worth it! Hang in there, you can do it!!

I'm going to end off now and will reply to your post instead (I've just read your story). Its interesting how similar our stories are hey! Makes it easier to know that there are people out there that are going through the same thing.

Bye for now,
G

Strange how all is well with the INR for months on end and then all of a sudden is goes haywire.

My INR was 3.55 on 23 June. Was told to stop Warfarin for 2 days and then 7mg on the 3rd and then another INR. This time round 1.18. Back on my normal dosage of 10, 10, 7mg and so on for a week. Next INR showed 1.61

This week's dosage is 10, 10, 10 etc and 7th day 7mg - next INR on 9 July.

As I'm sure we all agree - not only is this a costly exercise but also ... what a pain in the arse!!!

Hi Madeline,

Can I ask you a girl-talk question? How was it after you quit Triphasil? My best friend warned me that w/o the regularity of it, she experiences her share of let's say "hormonal incidents". As a person who never really experienced PMS (as far as I knew anyway!), I thought, nah... I'll be fine... no problemo. But since this all started, I confess to having a few late night meltdowns. In your personal opinion do you think it's possible that 20+ yrs. of estrogen suddenly being stopped (mid-cycle to boot) has anything to do with it? Or is it simply underlying stress? Or a combo of the 2 (more than likely)? How did you make out?

Hey there Brenda

I must say I did have my fair share of hormonal moments since I stopped taking Triphasil. At first I just put it down to giving up smoking but I seriously think it is a combination of the two (imagine what "joy" I must have been to live with those first two months hehehe) ....shame, poor Johan.

Stopping Triphasil will most definitely have a negative impact on your mood and cycle - your hormones are all over the place. It should not last long though. I went for a full gynea checkup and must say that cycle was spot on again in the second month and all back to normal. It is really worth going for a full checkup with the gynea too - I highly recommend it.

Incidently, my gynea recommended an IUD if you had a DVT/PE and can no longer take the pill. Would be interesting to hear if yours agree.

Must just tell you this on a lighter note - I read a quote of Roseanne Barr somewhere on the internet...goes as follows: “Women complain about PMS, but I think of it as the only time of the month when I can be myself.”
LOL!!!

PS: I have just had a call from the lab with my INR result and new dosage - halleluja ... its 2.25. Whoohooo!!!

Hi Madeline,

Thank you so much for sharing.... you are such a blessing to have here!!!! I'm so glad I have someone to talk to about this stuff!!

Yes, my poor Rob is being put through the ringer some days I suppose.... I must be a bit of a pain to live with at the moment. Today is worse... just got home from discovering I have PE too. (See my new post in my DVT Diaries). Oh man Madeline... I'm just so stressed out.... I know I shouldn't be, because I'm okay, but I am. Everything is just so bloody up and down... good news, bad news, confusing news, the unknown in between it all. It's still new and crazy!

Back to the whole pill thingy... yes I have an appt. later this month with the gyno (what we call them here) Funny enough, IUD is the only other option I could see having too. Did you get it done? What makes me nervous, is I've read and heard that it can make you bleed a bit in the first couple months... which may not be good for us folks. Ever heard that? What did your gyno say?

LOL thanks for the Rosanne laugh... I SOOOOO need a laugh today!!
Thanks for being here for me! Can't tell you how much I appreciate it Madeline.

Hi Brenda,

Shame, I really really feel for you and I can fully understand why you are so down and worried and upset all at the same time...I did respond to your DVT Diaries post - so won't say more here except for a quick "Hang in there - you are going to be fine, I promise!"

PS: We are DVT/PE survivors - we have certain rights too ya know - it cannot all be bad, we must have some perks too...SO, we are allowed to vent and cry and be happy and worry and cry so more when we feel down and then we feel fine again and if people think we are neurotic or self absorbed, well so be it! I have gotten over the "don't want to complain or discuss my feelings because I sense some people think I'm neurotic" sh*t

Okay, okay - I'm getting carried away ... back to the IUD...

The gyno did not say anything about possible bleeding in the first couple of months. He suggested it as the only alternative to the pill that we can use. To be honest, I did not explore it too much or ask too many questions because he said that if I plan to have kids in the next year or so, he would not consider doing the IUD now (due to cost and also usually not falling pregnant immediately) but if I want to wait longer than that, then he would suggest we do the IUD and have it removed when ready to have a child.

I went home and discussed this with Johan and we decided to not do the whole IUD thing just yet. We want to have a child and what will be, will be. So, we are not actively trying for a child just yet, but if I do fall pregnant now, it will be super cool too

As I'm sure you remember from an earlier post of mine, I was at one point ultra stressed about having a baby NOW. I am so thankful that this is out of my system and I've got a sense of calm over me now. What will be, will be and I've made peace with that. I believe a person's life is cut out for you and worrying about it, won't make it happen if its not meant to happen. Ultimately, God knows what's best for us.

I appreciate you being there for me too Brenda and all the help and support we get from everyone here. You guys are all FAN-BLUDDY-TASTIC!

Hi Madeline,

WOOHOO!! Awesome... thanks for sharing! So yes, it sounds like IUD might be the way to go, or (because I don't think kidlets are in my stars) , then maybe snip, snip for Rob... oy vay! I go to gyno I think on the 28th... and I think perhaps Rob should come along... we can all talk about options.... short and long term. I'll keep you posted on that one!

In the meantime, for you, that's a great attitude and yes, what is meant to be will be! Ah and little Madelines and Johans running around is a mighty cute thought huh?! When that day comes you HAVE to keep me in the loop!!!!!!!!

Cheers girl! You rock!

This place is awesome!

Yep, sounds like a good idea that Rob goes with you. Its also such a small procedure for men to go through, compared to women (especially if there is a risk of bleeding with IUD). As you say, if he is there with you, you can all chat about whats best for you guys.

Lol @ little Madelines and Johans running around - trust me, after Johan... you will be the first to know

My leg has been really sore the last couple of days. This often happens since I had the DVT more than a year ago, but was really concerned when this pain persisted for days on end and more achy than usual. I was also worried that I am clotting while I'm taking Warfarin!

Well, I finally had the courage to go for a Doppler yesterday and whoohoo, no new clotting going on in my leg! Yay!!

The doctor who did the Doppler reckoned that it is very common to have pain in your leg LONG after the DVT seeing as the vessel gets hurt/damaged by the clot. Also spoke to my friend yesterday (she had her DVT & PE a few years back) and she confirmed this, seeing as her leg also still hurts sometimes. Well that was a relief! I can live with the sore leg as times - as long as there is no more clotting going on, I'll be one happy gal!

Yay! Good news to no new clots! Bummer about the pain/ache though. I guess it depends on the damage done to the veins, and if part of the old clot is still in there... just covered by the vein wall now. ?? You think they could tell from the Doppler... wouldn't that be good... knowing exactly what it looks like in there would be so helpful!

Hope it's feeling better today! See?! You won & beat out those clots, like you said we would!!!

Ok... off to the next message...

Gismo wrote:

Strange how all is well with the INR for months on end and then all of a sudden is goes haywire.

My INR was 3.55 on 23 June. Was told to stop Warfarin for 2 days and then 7mg on the 3rd and then another INR. This time round 1.18. Back on my normal dosage of 10, 10, 7mg and so on for a week. Next INR showed 1.61

This week's dosage is 10, 10, 10 etc and 7th day 7mg - next INR on 9 July.

As I'm sure we all agree - not only is this a costly exercise but also ... what a pain in the arse!!!

You need a new coumadin manager. Anyone telling you to stop Coumadin for 2 days with an INR of 3.5 doesn't know Coumadin. By your normal dose, it looks to be your a fast metabolizer too. I self test and self dose because I couldn't find any competent managers around me and in your situation, I'd of waited one more test before doing anything, then if it was still above 3.5, reduced the dose by 10% over the week, but certainly not hold any. By doing that, they caused you to bottom out.

You may find this link and the algorithms in it helpful in the future:

http://www.aafp.org/afp/990201ap/635.html

Hi blebs

Thanks for your post. The blood lab is doing my dosage and sending copies of my INR to my doctor each time. I hear what you are saying, however, I can also understand why they would stop my dosage for 2 days and request a follow-up INR. My INR was in range for a very long time so then all of a sudden it shoots up. I know that mine was on 3.5 at that point but what if they left it for another couple of days and then, come 2 days later, my INR is at 5.0 for instance. I believe that is why they stopped it for 2 days. A patient runs the risk of bleeding internally if your INR shoots way too high.

I would have been more concerned if they told me to stop for 2 days and then continue treatment as usual and only want to do and INR say a week later.

I think they did that to get my INR down incase it keeps climbing way too high, way too soon (another thing if it had stayed on 3.5 but they don't know whether this will be the case). I think that the risk of me clotting again in 2 days (of no Warfarin) is far less than the risk of my INR shooting way out of range and I stand a chance of bleeding.

Seeing as you self-test and self-dose, it is easier for you to monitor as you know that there might have been a sudden change, say in your diet for instance and thus no major cause for alarm just yet. Seeing as the lab do mine they do not have that added knowledge of what I did since the last INR or possible reasons for it to shoot up and whether or not there is cause for alarm just yet which is why I prefer they take "worst case scenario" and get my INR down.

This is just my opinion and I may be way off, but it makes sense to me.

Thanks very much for the link - I will definitely read it. Much appreciated.

Thanks for pointing out that my dosage is due to me probably being a fast metaboliser of Warfarin. I always wondered about my high dosage, I never thought of that and I makes perfect sense. (Always wondered if it is because some people's blood is just "thicker" and thus need more anticoags than others).

Gismo wrote:

So many people close to me do not always understand my fears and (I think) the danger involved with this condition. I'm reluctant to talk about it too because I don't want to seem like I'm constantly whining or self-absorbed. I've always been so healthy, so maybe its just that I'm not used to talking / worrying about my health.

I too can completely relate to how you're feeling. Every time I relay more info to people close to me I feel as if they think I'm taking this too seriously and over reacting to the situation. There are too many scary stories out there to not take DVT or FVL seriously.

I also have been dealing with coming off BC pill after 7 years. You both hit it on the head. I think my outbursts are part stress and part of coming off the pill.

The ups and downs of this . . only 3 weeks in for me . . have been hard to deal with as well. Positive tests, negative tests, go on these meds, get off of those meds . . it just seems never ending. I'll be happy when I can meet with someone who has more knowledge than my GP and can finally start some sort of real treatment.

I enjoyed reading your posts and they've made me feel a little less alone with what I'm dealing with . Thank you both for that.

Hi Jen

How are you doing lately? I hope you have more answers to your questions. It is so frustrating to be sent from pillar to post, I can only imagine what you must be going through. Please know though that things WILL get easier. Have you been back to the doctor that started your meds at hospital yet? How are you feeling?

I think the worst for me was (in between all the confusion of what was actually happening) that I did not get enough answers or rather not knowing which questions to ask seeing as I had no clue re DVTs - what it was, why it was happening and just how serious it was. You have people taking bloods, injections going on etc etc and you are basically left in the dark, not knowing what the heck it is all for.

Anyway, the best thing for me was to read as much as I possibly could regarding DVT/PE. I would then ask my doctor about it. A person feels a lot more "in control" if you have the necessary information and actually understand what is going on in your body and what you need to do to take care of yourself.

With regards to people not understanding, I agree fully. It used to bug the hell out of me, but I finally decided to ignore it. If they think I'm neurotic, then so be it - I need to be. Now, as I learn more about it, I tell those closest to me too. I think what irritates me even more though is if people (those who have no clue regarding the condition) try to correct you lol. For instance, I would say to friends that I feel exhausted and tired at times and I believe it is because of Warfarin. I then get told by some, hmmm maybe it is this or that and not the Warfarin. Erm okay...lol

Do let us know how you are Jen! I hope you are feeling better!

Sorry, didn't mean to come off as a smart alek. I have yet to see some one bleed on an INR of less then 5. I've even had a couple show up with INR's as high as 13.0 by lab tests, which may or may not have been that high, but after 10.0 accuracy is no longer relevant. For DVT it's not as critical as it is for heart valves, but still, anything under 2.0 and you could be in trouble. It's better to replace blood, you can't replace brain cells. In other words, better to be too high then too low.

Hey blebs...no hassles INRs as high as 13.0!! Good heavens - scary! So if I understand you correctly, do you believe that the risk of bleeding is only really after an INR of 5? I don't know of anyone else that do their own INR testing and dosing (although I've read about it and seen advertisements). How long have you been doing your own and how often do you test your INR? I believe you draw blood just by a finger prick (similar to testing your blood sugar levels)? Do you need to call in your results to your doctor or do you only do so when there is a problem? (Lots of questions I know, but I'm curious as to how it works).

Have a good day!

Regards
Madeline

Gizmo I'm trying to find some published numbers but haven't found them yet, but basically yes, INR's 5 and under pose very little risk for bleeding. Now I can say with certainty that anything over 4.0 is no more beneficial then a normal range. People have been scared to death with the threat of bleeding and in honesty, it seldom happens. Older people 60+ years of age, are at a higher risk then younger persons. Older bodies have a natural clotting problem all their own in later years.

So many make it sound like if you get a minor cut, your going spurt blood everywhere and die. It's just plain silly. Stop the bleeding like you would any other time with direct pressure. Sure you may have to apply pressure for a tad bit longer, but it's no worse then someone not on anticoagulants.

Think of it like this, a normal nonanticoagulated person with an INR of 1.0 will clot in 10 to 12 seconds. Someone with an INR of 2.0, 20 to 22 seconds, 3.0 30 to 32 seconds. There is very little difference in the time between all of these. Enough of a difference to hinder clot formation, but not enough to allow you to suddenly hemorrhage blood from every pore in your body. They need to lose the term "blood thinner" because it does NOT thin your blood nor change the viscosity any, it simply affects the bloods ability to form clots.

I've been testing and dosing myself since the late part of 2001. I test once a week. Testing more then that is really a waste. It takes 3 days for a dose of Coumadin to show up in a blood test. So if your being tested every 2 or 3 days, the person managing you cannot find the correct dose because they've never given it enough time to stabilize. We see so much of this, that it's sickening. People complain that they've been getting tested for months and aren't stable, then they go on to tell you that their being tested 2 times a week or more and their doses are changed just as often. They'll never be stable in this type of situation. Test once a week and if a change in dose is required, change it, but don't test again for 1 full week. By then, the true picture will be presented.

By home testing, I can stay in range 70 to 90% of the time where as when I was going to the lab, best I got was 45% of the time, so there is a big difference.

You can watch a demo of one of the many systems at the link below:
http://www.protimesystem.com/pro_howtouse.html

Also, I'm leaving a link that you'll find very useful if for nothing other then having the knowledge:

http://www.aafp.org/afp/990201ap/635.html

Thanks so much for the links blebs and your very informative post!

Wow, what a painless and hassle free exercise with the home testing system. I'm really impressed. From what I've seen, they go for around US$1000 ... admittedly, converting that to South African Rands make me a tad light-headed LOL (Exchange rate of one : eight) *cough*

Still, I think for someone that is a long-term Warfarin user, it is definitely worth getting as the costs will be less in the long-run. I currently pay +/- US$11.25 for INR testing and dosage. If my INR is in range I only need to go once a month but when its out, it can be as often as 3 times a month. Apart from the cost, it will just be a lot less troublesome. Hmmm....serious food for thought and investigation - wonder if they sell them in SA ... erm, what's the chance lol.

Yes, the units are quite expensive. I'm not sure if any are available in your neck of the woods, but couldn't hurt to ask. What your paying vs home testing is about the same, so there isn't any savings that I can see except your veins.

I wish I were one that could get away with once a month testing, but my INR, even self managed, can get way out of wack in 2 weeks. Also, my INR fluctuates between Winter and Summer. I guess it's due to where the veggies come from during the year.

The lab phoned me this morning, INR stable again at 2.45 so next INR only on 22 August again...Yay!

Had a nice morning shopping and bought some leg stuffies Bought two pairs of compression socks seeing as my leg is very achy of late so want to give them a bash. So here I sit with them on and dero, full marks for calling it fugglies lol, I have to agree.

Found such a stunning foot rest too which lets you exercise your legs when sitting. Only bought one first to try it out and I must say its really fab! I'm going to get another one in this week to use at the office. I spend far too much time in front of a computer so this is ideal. Check the pic below.

Oh yes, and found a cool pill cutter too, quite nice as it has a compartment where you keep your pills in. So now, I'm organized

Am I the only one that has a pill compartment and still ocassionally forgets to take his medicine?