smokey52
Posts:498
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| 01/16/2017 07:26 PM |
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Cosmic,
She has an appointment tomorrow with her primary MD. The hematologist did not seem interested in finding root cause, but her primary (and the local sick-care MD) are extremely involved. A big factor may be immobility. Her MS has moved into secondary progressive, and walking is a challenge. There may be a drug/drug interaction involved with some of her supplements. We are looking at a consult in NYC. wrt once a day vs. BID, she has a routine for taking meds. One of her early MS drugs wrecked her thyroid, so she is on twice a day meds for that. Adding Eliquis to the routine would not be an issue.
SideBySide,
Thanks for the good wishes. She has a hand pedaled trike too. Not nearly as aero as yours.
All-
I find this site a welcome release. This is not an easy issue for me to talk about. I explain factual details to the kids (actually young adults - 35 and 33, and the daughter has a kid of her own), family, and friends, but I always try to keep a positive spin. I can't say how scared I am to be a widower. Thanks again for the good wishes.
smokey |
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longslowdistance
Posts:2886
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| 01/16/2017 09:14 PM |
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Wow.
Best wishes and good luck. |
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Cosmic Kid
Posts:4209
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| 01/17/2017 10:22 PM |
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Oh, jeez, I'm sorry but I had forgotten about her MS....well, certainly issues with mobility could be playing a role, but I am very surprised that the hematologist has not ordered a full panel of blood tests to check for other situations such as Factor V Leiden (my issue). Please make sure you discuss this with your primary doc....and I would suggest looking for another hematologist, as well.
glad we can provide some kind of outlet for you smokey....anything we can do to help, even if it is just to listen, we're here for you (or at least as many of us that may be left at this point!!). You may also want to find someone you can talk to professionally....you are carrying a lot on your shoulders, but you need to take care of yourself, too.
Keep the faith, brother.... |
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| Just say "NO!" to WCP!!!!
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smokey52
Posts:498
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| 01/18/2017 09:42 AM |
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| Definitely looking for a different hematologist. Her primary recommended a specialist at Columbia-Presbytarian, and she is making an appointment. The current hematologist is the one who was on call at the hospital when she was first admitted. He is competent but not deep. |
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Nick A
Posts:625
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| 01/21/2017 11:23 AM |
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| Loved one in danger is always scary. My wife got bitten by a dog my son was dog sitting for. The bite wasn't bad at all...but the infection landed her inpatient with IV antibiotics. Take this with a grain of salt...but I spent five years as an oncology social worker. At least in a teaching hospital kind of setting, I think that "benign hem" is generally relegated to fellows as it's not as "interesting" as leukemia and lymphoma... |
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smokey52
Posts:498
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| 01/21/2017 08:14 PM |
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| definitely off Coumadin. Waiting for INR to drop to start Eliquis. Another blood test tomorrow. |
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Cosmic Kid
Posts:4209
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| 01/22/2017 09:48 AM |
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I think that makes sense....given Coumadin's nature to cause INR to fluctuate combined with your wife's other medications / health issues, being able to lock in her INR using a next-gen thinner is smart, IMO. Take away the variability...
Good luck with the tests. |
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| Just say "NO!" to WCP!!!!
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79pmooney
Posts:3189
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| 01/22/2017 10:30 PM |
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Guys, I met a woman who qualifies as one of us at my ride espresso stop, She is not riding now as she is on thinner (Eliquis) as a result of a crash last June. A warrior. By that, I mean that even serious crashes don't stop her. TBI, cracked hip. The loop she rode around here is ~40 miles and 3000'. She is itching to get riding again.
I invited her onboard the forum, but I wonder if a newcomer actually can get on here with the state of the website. We might need Keith's friend's help. I don't have Keith's E-mail. Her name is TeriAnn. If she comes on (and we can get her on), welcome her.
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Dale
Posts:1767
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| 01/23/2017 09:02 AM |
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Ben, I forgot my password when I updated my hard drive and tried to sign up under a new persona but couldn't post anything so I doubt we can get new members posting  |
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smokey52
Posts:498
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| 01/24/2017 08:25 PM |
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| still unsettled. horrible allergic reaction to Eliquis; switch to Xarelto, another allergic reaction. thank goodness for Benadryl to keep the hives at bay. Now back to warfarin. It looks like she will face the vampires again. Oh well, so much better than a funeral. |
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Dale
Posts:1767
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| 01/25/2017 08:09 AM |
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Oh man... so sorry to hear this has been such a roller coaster for you guys. Hope she gets that stabilized.
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Cosmic Kid
Posts:4209
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| 01/25/2017 09:17 AM |
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Oh man....sorry to hear that, smokey.
Talk to your docs about getting a Coagucheck machine that you guys can use at home. Given the variability in her INR, they may not sign off on the unit just yet (or they may think it is a great idea since you can easily check and report daily, if they want).
I just got my machine and all my readings are sent automatically through my phone. My life just got a whole lot simpler..... |
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Nick A
Posts:625
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| 01/25/2017 10:20 AM |
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Yeah, Smokey, sorry to hear about all of that. I've always been relatively healthy, but my wife seems to have the occasional scare. I mentioned the infected dog bite. She also had a detached retina once, a basal cell removed... It's stressful when your loved one is in crisis.
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mondonico
Posts:158
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| 01/28/2017 06:41 PM |
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| Late again. Was also taking coumadin for Afib. Blood went to an 8.9 inr also. Got a call from an oncall Dr., had gone to urgent care ealier that day for blood tests etc., at 2AM telling me to get to IR ASAP. I was bleeding like a stuck pig and could not stop. If I and I also assume your wife. had an even minor injury we would not be here. Was put on a Vit.K drip for a day and sent home. Got off coumadin that week and went to xeralto. Glad your wife is trying something else. My cost went from 3 bucks a month to 50 but more than worth it. However I am now off all blood thinners so can't comment on how long i would love paying another 50 a month or more. |
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smokey52
Posts:498
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| 01/29/2017 08:29 PM |
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Thanks again all. The love of my life is stable and in therapeutic range for warfarin. Until she established the therapeutic range, she did twice daily Lovenox injections. Better than being in hospital with IV heparin, but not really a lot of fun. The allergic reaction may have been coincidental. Stress is a huge factor in MS, and sometimes hives have an autoimmune trigger. We're hoping she can keep a steady-state, and maybe the visit to NYC with the expert will provide clues to a better path forward.
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Other news: I registered for a sprint triathlon in July in Albany. She's thrilled I have something to work towards (besides the Cape Cod Getaway MS bike ride at the end of June). I did this tri in 2012. I figure if I do it every 5 years for the next 35, I'll live to 110. |
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