This site is for people with DVT, seeking comfort and information from others who understand from personal experience. |
| | My story... | |
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+14Mckenzie susan p_vinay Tika CrazymamaLJ Justmartha blebs TLG RetiredNavy02 Ivpounder Gismo brendablackburn Sharon dero 18 posters | |
Author | Message |
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dero Admin
Posts : 904 Join date : 2007-12-09 Age : 64 Location : Near Ottawa, Ontario Canada.
| Subject: Re: My story... Fri Nov 07, 2008 11:43 am | |
| Tom, let me know what you discover, I will check at my end also. | |
| | | dero Admin
Posts : 904 Join date : 2007-12-09 Age : 64 Location : Near Ottawa, Ontario Canada.
| Subject: Re: My story... Fri Nov 14, 2008 2:22 am | |
| Hmmmm, INR of 3.6 still not in the alarming stage, but still weird, myhematologist wants to see me again tomorrow for another INR since todays dosage which was suppose to be a 9 was changed to a 6mg. We'll see tomorrow. | |
| | | Gismo
Posts : 100 Join date : 2008-03-20 Age : 53 Location : Johannesburg, South Africa
| Subject: Re: My story... Fri Nov 14, 2008 5:42 am | |
| i hope the INR behaves and gets back in range again soon. Good luck with tomorrow's | |
| | | dero Admin
Posts : 904 Join date : 2007-12-09 Age : 64 Location : Near Ottawa, Ontario Canada.
| Subject: Re: My story... Fri Nov 14, 2008 4:48 pm | |
| Being told NOT to worry... INR is 3 and I'm down to 8MG. Next INR next thursday, EVERYBODY is puzzled as to why this is happening...
Hi Madeline, yes I do too, talk about getting a lot of medical attention and some peeps are fighting to get one appointment. HOw have you been, how's life? | |
| | | dero Admin
Posts : 904 Join date : 2007-12-09 Age : 64 Location : Near Ottawa, Ontario Canada.
| Subject: Re: My story... Wed Nov 19, 2008 7:50 pm | |
| ...and this week, 1.7 for an INR, they are completely baffled as to why this is happening to me,after being consistent for so long and from the head of the Thrombosis dept." keep him on the same dosage, and have him come back in two weeks, let's stop this yoyoing... " Like my doc said, she's not worry because it's not like I'm way under or over range. So we"ll have to see what happens next. | |
| | | Gismo
Posts : 100 Join date : 2008-03-20 Age : 53 Location : Johannesburg, South Africa
| Subject: Re: My story... Thu Nov 20, 2008 7:05 am | |
| It boggles the mind! So strange that your INR is yoyoing out of the blue after always being able to control it so nicely. As you say, at least its not way under or way over. Hmmm....one wonders what the heck is causing it. I'm doing pretty good thanks Denis. Just cannot wait for the end of the year's holidays. This year is getting way too long now. I'm still taking Clexane and holding thumbs - so far, nothing to report. | |
| | | dero Admin
Posts : 904 Join date : 2007-12-09 Age : 64 Location : Near Ottawa, Ontario Canada.
| Subject: Re: My story... Sat Nov 22, 2008 7:41 pm | |
| As if that was NOT E'NUFF!!!! (Yoyoing INR) Friday evening I was at work, and I went to the washroom and looked at myself in the mirror, I noticed that My left eye was looking ODD, after a closer inspection, I realise that I had blood on the bottom left (inside ) portion of my right eye, I went to my boss and showed him and told him that I was going to the hospital to get it checked out. One of the first time that I get in the hospital and NOBODY is at the triage lineup, so did the paper work and was told to get a seat that my name would be called out, never made it to the seat that my name was called out... After a medical examination, by a emrg. Dr., it was concluded tha I had busted a blood vessel, that it was NOT on the colored pigmentation portion of my eye, therefor no damage was done and was told to go away!!!! went back to workat 9:30 PM to finish at 10:00PM No medication, no patch, it should go away on it's own in 4 to 5 days. IF NOT, I go back to the emerg. | |
| | | dero Admin
Posts : 904 Join date : 2007-12-09 Age : 64 Location : Near Ottawa, Ontario Canada.
| Subject: Re: My story... Thu Dec 04, 2008 2:23 pm | |
| Bounce bounce bounce... INR 3.2 Nect INR, next thursday. I'm ready to bet that it will be low, as in under the 2.0 mark See you next thursday to verify my predictions. Like the study coordinator said, it's not like I'm waaaaaaaaaay out of range, out of the safety zone... | |
| | | RetiredNavy02
Posts : 45 Join date : 2008-03-03 Age : 60 Location : Connecticut
| Subject: Re: My story... Sat Dec 06, 2008 3:36 pm | |
| Hey, my INR is only about 1.0 right now; glad I'm bridging with Lovenox.
Surgery went well. Don't see me getting back on the bike anytime too soon. My cadence leg is totally useless; no strength. I did climb a flight of stairs on day 2 and 3 on the hospital fire escape as part of my Physical Therapy but other then that, no strength.
Regards, Tom | |
| | | dero Admin
Posts : 904 Join date : 2007-12-09 Age : 64 Location : Near Ottawa, Ontario Canada.
| Subject: Re: My story... Sat Dec 06, 2008 4:10 pm | |
| Hey Tom, Glad to hear that things went well, I was going to see if you want to go and ride somewhere in Vermont... Right, take it easy, improve BUT don't go too fast. | |
| | | RetiredNavy02
Posts : 45 Join date : 2008-03-03 Age : 60 Location : Connecticut
| Subject: Re: My story... Sun Dec 07, 2008 1:15 pm | |
| Mt Snow, eh? Right now I can't imagine getting up to par to ride anything. The type of surgery I had was minimally invasive hip replacement which meant a lot less muscle cut and only about 4 1/2 incision. I can't imagine having a traditional hip replacement since those folks were only graduating to getting up to sit in a chair when I left the hospital. We had moved to climbing the fire escape (one flight of stairs). Even with that said, I feel pretty lame; no leg strength. I'm now as time goes on it gets stronger. Don't know if I'll anything too challenging when I do get back to riding. The fear of having to go through this again will linger for some time. Fire Road, Double Tracks and beginner single-tracks are in my future; until I revise that vision | |
| | | dero Admin
Posts : 904 Join date : 2007-12-09 Age : 64 Location : Near Ottawa, Ontario Canada.
| Subject: Re: My story... Sun Dec 07, 2008 5:47 pm | |
| I was thinking Kingdom trails myself... If everything goes accordingly for me, I may be there in September, IF, everything, goes accordingly... It has to be the east-coast mecca!!!!! I have been to Mt.Snow and it is nothing compared to Kingdom... First you and I have got to get ourselves back in the saddle, I have mucho work to do on this body during the winter, cardios are shot and have put on a "Michelin Tire" and don't like it!!! Yes, start on steps and soon they will have you running up the stairs in a stadium (those are killers) Anyways, Tom it's good to hear from you and that things are looking better, keep on keeping on!! | |
| | | dero Admin
Posts : 904 Join date : 2007-12-09 Age : 64 Location : Near Ottawa, Ontario Canada.
| Subject: Re: My story... Thu Dec 11, 2008 5:15 pm | |
| As I sneak just under the wire with an INR of 2.9 and my next INR will be in a month...The way it should be. We still cannot explain why I went all over the map with my INRs in he last two months. Unless I am truly on Dabigatran and the drug company is reading this and wanted to throw me in a loop. Anyways... | |
| | | dero Admin
Posts : 904 Join date : 2007-12-09 Age : 64 Location : Near Ottawa, Ontario Canada.
| Subject: Re: My story... Thu Jan 01, 2009 4:49 pm | |
| You will have to excuse my absence lately, but I have a doctor's certificate...
Yes, on the Dec 24th, I started working at 6:30PM and had this slight pain in my stomach(a 3 for those who understand the "from 1 to 10 pain scale",nothing to sound the alarm) but as the evening progressed so did my pain(at that point it was a 7) and I was also starting to have problems breathing (could not get a full breath in) as I have told many(better be safe then sorry) I went to EMERG because, at that point, I was thinking PE (Pulmonary Embolism) this is at 11:30PM. In the queue I went in front of everybody (there was about 10 or 15 others already) at this hospital they do not take chances when you say that you have prior history with DVT. Off to a waiting room, blood work, D-dimer,vitals, ECG and lung xrays, were done and a Cat Scan was booked,(Well's way) being that this was XMAS eve, they said that they had to round out a CT Scan technician and a radiologist and that I was probably staying over night under observation... At that point the D-dimer was negative, INR was 1.6 heart and BP were good, chest Xrays were clear, but still no answers from the CS crew. CT Scan was performed at around noon Dec 25th, results came back and PE was ruled out,(YAY!!!) BUT they saw some stones in my gallbladder(OH...) so an Ultrasound was booked and my gallbladder was inflamed,= pain across the stomach/chest and it was pushing my liver up into my lung,hence the problems breathing.At that point a surgeon was called in, my gallbladder was on it's way out. WAIT, HOLD EVERYTHING!!!! I'm a drug study, I'm either doing warfarin or dabigatran. Warfarin can be reversed with a shot (quantity unknown to me) of vitamin K. Dabigatran on the other hand can not be reverse but has a 1/2 life of 2 days, so 2 days renal ways to have it out of my system. When the surgeon heard this, he said "until we know what you are on(anticoagulant wise) we are NOT operating, too many chances for complications." I was then checked in a room and was staying overnight again, until things were sorted out.
BTW Merry XMAS to all !!!!
So to make a long story short, I was not operated, it will happen in six to eight weeks from now. I was discharged on Dec 30 for good behavior HA!!! Out of those six days I was on a clear liquid diet for 4 days (not recommended to be tried at home, they are professionals) then started a low fat diet which I will remain until the procedure is completed. Not much change from my regular diet, so no biggy. As i get all of the "official" data, I won't enter numbers in my journal.
I am presently on Fragmin injections (Dalteparin sodium) until after the procedure, as a anticoagulant it CAN be reversed if needed and on antibiotics. What do I do after all of this is done, do I bridge over back to the study or not???
This raises many questions for me...
I have a follow up apt with my Hematologist on the Jan 8th/2009, many questions will be answered.
So I'm regaining my strengths, still alive and walking, as usual, that is what counts!!!! more to follow... | |
| | | Gismo
Posts : 100 Join date : 2008-03-20 Age : 53 Location : Johannesburg, South Africa
| Subject: Re: My story... Sat Jan 03, 2009 5:37 am | |
| Oh no!! Shame, I'm so sad to hear this Denis. How horrible that you had to spend Christmas in the hospital. How come are they only operating in 6 to 8 weeks from now? Surely they can do so sooner seeing as the effects of the anticoags can be sorted out way before that? Are you still in a lot of pain or is it at least manageable now? Thinking of you and hope you will feel better soon! Best, Madeline | |
| | | dero Admin
Posts : 904 Join date : 2007-12-09 Age : 64 Location : Near Ottawa, Ontario Canada.
| Subject: Re: My story... Sat Jan 03, 2009 3:12 pm | |
| HI Madeline,
Hope you and your family had a great festive period...
That is the time (6 to 8 weeks) it takes the gallbladder to NOT be inflamed (swollen) when the gallbladder is inflame it limits the operating maneuverable area, (cramped for space). I am presently on antibiotics and on Fragmin(it's like Lovenox) a Low Weight Molecular Heparin, which is totally reversible if needed. They had a three day window to operate, but it was then that my Dr. was away(it was Christmas) and nobody else could access my files (re:. the Drug Study). I am not in pain, but just a slight discomfort,nothing compare to what it was the first night. NOTHING!!!!! | |
| | | Gismo
Posts : 100 Join date : 2008-03-20 Age : 53 Location : Johannesburg, South Africa
| Subject: Re: My story... Sat Jan 03, 2009 6:03 pm | |
| Thanks Denis, we sure had Ooooooh okay, now I understand. Yup, makes perfect sense. What a pity about timing over Christmas and that you now have to wait. Glad to hear that you are at least not in pain. Will be interesting to hear what your Hematologist thinks and suggest about the drug study. Oi, if its not the one thing hey... Be well and chat again soon! | |
| | | dero Admin
Posts : 904 Join date : 2007-12-09 Age : 64 Location : Near Ottawa, Ontario Canada.
| Subject: Re: My story... Thu Jan 08, 2009 11:32 pm | |
| WELL... Today (Jan 08/09) I had a "followup" apt with my hematologist regarding my past gallbladder happening. We sat down and she then told me "we are going to talk mainly of the pre-op, op and post op"from the DVT side of things. I said "good, I have many questions regarding all of it. -I will continue with Fragmin (one injection a day/1500 IU) until the day before the op. -Post OP, I will be restarting with Fragmin injections 5000 IU and until I am eating and well, at that point I will start from scratch with Fragmin 1800IU and warfarin until I reach a therapeutic range of between 2.0 and 3.0. Then I will be only on Warfarin until further notice. I found out today that I have officially been OFF the REMEDY study since Dec.26, on the third day of my hospital stay. What that means is that I no longer am part of the double blind drug study, I still am going to be monitored by the "REMEDY" crew until august/09 but I am NOT doing either Dabigatran or Warfarin. She then stop for a second and asked me if I had any questions concerning what she had just told me??? As I look at all the papers I had prepare, I said NO, oddly enough you have covered everything, SPECIALLY the Post Op part, about the study. *insert heavy sigh of relief here!!!* So there, today is the first day of many on the return road of life, as I once knew it. Soueat!!! | |
| | | CrazymamaLJ
Posts : 8 Join date : 2008-12-02 Age : 53 Location : Edmonton Alberta, Canada
| Subject: Re: My story... Fri Jan 16, 2009 9:43 pm | |
| Denis... how is your eye now? INR stabilizing? | |
| | | dero Admin
Posts : 904 Join date : 2007-12-09 Age : 64 Location : Near Ottawa, Ontario Canada.
| Subject: Re: My story... Sun Jan 18, 2009 9:55 pm | |
| Huh? Oh my eye!!! It is good now,that was a while back the blood that was present in it took about 5 days to disappear (like the ER doc said...) As for my INR, since I'm on Fragmin injections (which is NOT affected by vitamin K ) I don't have to worry about that, until after my gallbladder operation and once I'm back on warfarin and Fragmin for a bit until I get therapeutic again... Then I will play the INR roulette game. My hematologist thinks that I will most likely be off any anticoags by the summer. We'll see... | |
| | | CrazymamaLJ
Posts : 8 Join date : 2008-12-02 Age : 53 Location : Edmonton Alberta, Canada
| Subject: Re: My story... Mon Jan 19, 2009 3:04 pm | |
| YAAAAAAAAAAAAAAAAAAAAAAAAAA OFF ANTICOAGS!!!!!!!!!! Summer!!! My 2 favorite 3 words!
Glad the eye is better. The shots are bittersweet huh.. no inr testing.. no inr worries.. but poking.. eeww
Talk soon, Sir | |
| | | dero Admin
Posts : 904 Join date : 2007-12-09 Age : 64 Location : Near Ottawa, Ontario Canada.
| Subject: Re: My story... Thu Jan 22, 2009 10:23 pm | |
| Yes, I'm running out of spots where it does not hurt so much and the bruising. Aaaaaaah well... Got a phone call from my surgeon, I have an apt on Feb 17 to check me (my gall bladder) out and schedule a day for the operation... At least it will be done before spring rolls around. | |
| | | CrazymamaLJ
Posts : 8 Join date : 2008-12-02 Age : 53 Location : Edmonton Alberta, Canada
| Subject: Re: My story... Sun Jan 25, 2009 9:50 pm | |
| YAAAAAAAAAAAAAA for the schedule!! Best wishes on that! Be sure to let us know how it goes.. The shots bruise less if you put the med in painfully slow (no pun intended. ha). honestly.. i hardly had a bruise... my hubby took a loooonnnngggggg time putting it in.. drop by drop. Have you tried that? Actually that is gross in itself.. but good news on your gall. | |
| | | dero Admin
Posts : 904 Join date : 2007-12-09 Age : 64 Location : Near Ottawa, Ontario Canada.
| Subject: Re: My story... Mon Feb 02, 2009 8:57 pm | |
| Where is the final plateau??? So I have PTS (Post Thrombotic Syndrome) because of the blood clot some veins and valves in my leg have been damaged, OK, I can live with that, it's the ulcer part I don't like (some people with PTS get ulcers and need to get them removed)more operations... Just found that out today, I was going for my 6 month leg measurement for my next pair of Study Fuglies and the study coordinator went and got the Hematologist after a few probes here and a few questions, I have PTS. Lifer on Fuglies, that I can also live with, but how is that going to affect my plans of getting back in shape and on the bike after I get off the anticoags in May? | |
| | | CrazymamaLJ
Posts : 8 Join date : 2008-12-02 Age : 53 Location : Edmonton Alberta, Canada
| Subject: Re: My story... Tue Feb 03, 2009 12:19 am | |
| 'Lifer on Fuglies, that I can also live with, but how is that going to affect my plans of getting back in shape and on the bike after I get off the anticoags in May?'
Dero... im so sorry. argh. The clot is gone right? So does PTS create more probs ie: ulcers if you work out? Is that what you are wondering? | |
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