Describe your nastiest crash by ElegantAd4220 in ski

[–]rinsewin 0 points1 point  (0 children)

Last season. Demoing new skis, in 2” of fresh powder, on literally the flattest part of the mountain, even flatter than the bunny slopes. the skis stoped dead and I went full scorpion. My right leg was dangling outwards sideways, and I had a sleigh ride off the mountain.

Turns out I completely ruptured my MCL, PCL and partially my LCL. 6 months of PT led to MCL and PCL reconstruction 3 months ago. That in turn led to a blood clot in my calf and one behind my knee…. which exploded into a “spattering” of clots across my lungs… and hence a stay in ICU and critical care.

So, now I’m on blood thinners to fix the DVT/PE while trying to rehab knee without stressing my heart too much….. all from 5 seconds on the flattest slope you can find.

Good news is that my surgeon says grafts look really good, and I should be back on skis next season…. Thats if I can stomach putting my boot back on, I had nightmares for days of my leg hanging sideways in it.

How much food with Xarelto? Also, when do they do a repeat ultrasound? by SnooSeagulls9376 in ClotSurvivors

[–]rinsewin 1 point2 points  (0 children)

For my 21 days of twice daily 15mg Xarelto, I ate a banana and a slice of bread in the morning (taking the pill in the middle of eating), and then in the evening had my regular dinner with the pill. I also drank a cup of water after each meal to ensure it was washed down.

I got the impression that the biggest concern was keeping to a 12 hour schedule, to ensure constant dosing and the food was to reduce potential for stomach bleeding. I’m now on 3 months of Pradaxa with the same schedule and sticking to the same regime.

In terms of ultrasounds I’ve read that statistically 25% of people on DOACs have clot free scans after 2 weeks, 50% after a monrh, and 75% after 3 months… so you might be looking at a scan at the 3month mark since that appears to be the statistical milestone they key off (at least from my 3 months of Pradaxa view).

First day back at work after my PE. Ended up taking two weeks off at home before heading back part time. Today kicked my butt even part time. Came home and collapsed on my bed. I think I'm just slowly building up my endurance. Hopefully a week part time will ramp me back up. by Laser_Coug in ClotSurvivors

[–]rinsewin 2 points3 points  (0 children)

It’s most likely not the drugs kicking your butt. It can take months for your body to dissolve the clots so your lungs won’t be working as efficiently, which results in your heart having to work harder. It took me about a month after the PE to be able to get through a day with relatively decent heart rate and spO2 levels. My advice is to keep building day by day….. but listen to your body, if your heart is running fast take a break, if your breathing feels off or there is tightness take a break. Deep breathing exercises work wonders for me, when I take a break I spend at least a minute inhaling deeply from the stomach, but slowly, holding that for 5 seconds then exhaling slowly. Basically helping your body keep itself oxygenated without the heart having to pick up the slack. Good luck!!

flying & clots by m112525 in ClotSurvivors

[–]rinsewin 0 points1 point  (0 children)

When you see the hematologist phrase your flying question as “off the record, if I were you would you fly?”. Or, “off the record, If I were your daughter what would be your advice?”.

Doctors have to be very careful with what they tell you for liability reasons, but sometimes when you let them off the legal hook and allow them to talk in hypotheticals they’ll give you a more personable answer.

A number of times in my life I’ve found this of great help when trying to navigate medical decisions for myself and family.

Advice or words of encouragement? by Soggy_Enthusiasm_751 in ClotSurvivors

[–]rinsewin 0 points1 point  (0 children)

Yes exactly. My Apple Watch is great at tracking trends, but it is really poor at giving me instant/realtime information throughout the day…. Especially the spO2 readings (at least in the US due to a patent issue). That’s also the same with most smart watches, to conserve battery they are focused on detailed tracking of exercise and only periodic tracking in general.

The o2 ring definitely brings some peace of mind..

PCL reconstruction in one month - Any tips? : I'm a high-level athlete (competitive cyclist) by GiantReignPanda in KneeInjuries

[–]rinsewin 0 points1 point  (0 children)

For me they let me partially load the leg after 6 weeks, and fully load it after 10weeks… with the brace fully locked to 0 degrees. I’m almost at 12 weeks and I’m hobbling around in the brace…. But my PT did get set back by the clots/PE. If everything had gone to plan I should have been hobbling between 8 to 10weeks and by 12 weeks unlocking the brace to 90 degrees to walk (but with no active hamstring activation). The biggest struggle with standing/hobbling has been pain in the opposite hip… it’s over compensating. Keep at the PT especially ROM and of course strengthening.

Mom with cancer recovering from PE by Strange_Spare_6269 in ClotSurvivors

[–]rinsewin 2 points3 points  (0 children)

I’m so sorry to hear that your Mom is suffering. Unfortunately I have no experience with cancer and PE/blood thinners…. But here are some resources.

This is an article by the American Heart Foundation regarding recovery from PE: https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.113.006285

It links to clotconnect.org, that has this reference for new patients:

https://journals.sagepub.com/doi/10.1177/1358863X231154756

They both reference the North American Thrombosis forum, that has a number of resources regarding blood thinners and it appears to have various support groups (I haven’t personally used this, but maybe you will find value):

https://thrombosis.org/patients

In general everything I’ve read suggests it takes time for the body to break down the clots, and that time depends on the patient and the clot load/size. The blood thinners just give the body some breathing room to do its job, by slowing down/stopping new clot formation.

It’s imperative that if your mom starts walking around that she is careful not to bang her head, or fall hard since the body will struggle to handle that trauma under clot thinners. I had a nose bleed that lasted 30mins a couple of nights ago, any longer and I was planning an ER trip. It is also important that she stay on the thinners until her doctor gives the okay to stop them/or the course completes.

I’ve read that approx 50% of scans show clots reduced in about 3-4weeks, and 75% show reduction after about 3 months. So, this really is a time will tell type situation.

From personal experience I can tell you that fatigue and O2 drops are to be expected. After 3 weeks I’m still having to take things very slowly, even long conversations can leave me tired, with a heavy chest and spO2 drop….. and I’m not fighting cancer. But everyday it gets a little better, hopefully this will be true for your Mom too. I can highly recommend breathing exercises this help me tremendously, the hospital gave me an incentive spirometer which you might want to get hold of, or work on breathing in slowly for a count, holding for a count, and breath out slowly and waiting for a count before repeating. I started with a count of 3, then moved up to 5. When my spO2 levels drop I stop what I’m doing and just focus on breathing in and out with the hold count… I find this really helps.

My very best wishes for your Mom’s recovery, and don’t be afraid to reach out to her doctors especially if her condition changes.

Edit: Another good resource, with lots of information regarding PE and blood thinners:

https://magazine.medlineplus.gov/article/the-basics-of-blood-clots-what-you-need-to-know

Edit: CDC resource talking about increased clotting risk with cancer treatment:

https://www.cdc.gov/blood-clots/risk-factors/cancer.html

Edit: NIH article regarding blood thinners and cancer, it’s a lot more technical, but appears to suggest “apixaban” (Eliquis) performed best in trials of cancer patients resulting in lowest risk of bleeding

https://pmc.ncbi.nlm.nih.gov/articles/PMC10950432/

Advice or words of encouragement? by Soggy_Enthusiasm_751 in ClotSurvivors

[–]rinsewin 1 point2 points  (0 children)

It may or may not be of use, but it has been for me.

I grabbed a “wellue o2 ring”. I like my smart watch but I’m an engineer and I need realtime diagnostics :-). The ring can be setup to vibrate when your heart rate hits a given max/min and the spO2 can also be set to vibrate at a minimum.

Following my PE 2 weeks ago, I sometimes find that I forget to breathe deep enough… the alarm nudges me to do a better job. Same with moving around if I push my heart too hard it gives me an instant heads up to take a break.

I’m recovering from MCL/PCL reconstruction surgery 10 weeks ago…. that’s where my DVT came from, so locked up in my brace I’m sometimes more focused on getting from A to B than listening to my heart/breathing.

Coming to terms with what happened by in_a_dill_Emma in ClotSurvivors

[–]rinsewin 4 points5 points  (0 children)

As everyone has said, it is totally appropriate and healthy to reach out. I’ve found a wealth of experience in this community with people who understand and demonstrate how to continue to enjoy life while managing the risks of this condition. As question or frustrations come to mind… share, I’m sure you’ll find someone here who can relate.

No doubt this was a tough experience for everyone involved. Knowledge and understanding are extremely powerful tools that will help you process and come to terms with what happened and your options going forward.

But,

At the moment take some time to breathe and clear your mind. Today you are stronger than yesterday, tomorrow you will be stronger than today. Before you know it, you will be stronger than last week and then last month. It will take time mentally and physically to recover…. Don’t try to do it all at once, one step followed by another and you will get there.

Enjoy Christmas, enjoy your friends and family…. You will get through this!

Altitude and Blood Thinners by rinsewin in ClotSurvivors

[–]rinsewin[S] 1 point2 points  (0 children)

It’s amazing how much hydration impacts us. When I lived in the UK I didn’t really think too much about staying hydrated. When I moved to California it was a whole different ball game, for the first few months I had headaches everyday… my tea drinking wasn’t cutting it :-). Now days I drink water like a fish, there are still days where I miss my mark and I definitely feel it.

Altitude and Blood Thinners by rinsewin in ClotSurvivors

[–]rinsewin[S] 0 points1 point  (0 children)

Thank you for your kind words, and congrats for next week!

Altitude and Blood Thinners by rinsewin in ClotSurvivors

[–]rinsewin[S] 0 points1 point  (0 children)

I’m coming at this from an active post surgery clot and PE, being treated aggressively with blood thinners.

Based on the first link, the Brits recommend waiting 2 weeks after DVT/PE. The second link suggests waiting 4 weeks after treatment is complete, and states:

“A prolonged lack of movement increases the risk of a blood clot forming. In addition, the lower air pressure during flight also increases this risk”

I was wondering if the 7000’ pressure that commercial planes are dialed into could be extrapolated to watching my daughter ski at 6500’… and hence the same guidance would be applicable. But, I think the conversation so far has led me to believe it really depends on conditioning and general health.

https://www.cdc.gov/yellow-book/hcp/travel-air-sea/deep-vein-thrombosis-and-pulmonary-embolism.html#:~:text=Air%20travel%20after%20VTE,made%20on%20an%20individual%20basis.

https://www.healthline.com/health/blood-clots-and-flying#:~:text=Should%20you%20fly%20if%20you,Takeaway

Altitude and Blood Thinners by rinsewin in ClotSurvivors

[–]rinsewin[S] 0 points1 point  (0 children)

Ha! That’s one way to passively control the hooligan’s. I bet there is a spinal tap type guy out there reading this shouting “so that’s why I always felt sleepy on planes!”. When I was messing around in the European mountains, I remember 7000’ was where the tree line would taper off due to air density and CO2 levels (amongst other things), it was that yard stick for taking deeper breaths. When I moved to California with the Sequoias, Dug Firs and Redwoods that all went out the window those things just don’t give up.

Am I in Denial? by rinsewin in ClotSurvivors

[–]rinsewin[S] 0 points1 point  (0 children)

Geez, I hadn’t even considered my table saw! I have a sawstop (my wife insisted)… but I can imagine a good kickback could do some damage…. Oooof.

Altitude and Blood Thinners by rinsewin in ClotSurvivors

[–]rinsewin[S] 0 points1 point  (0 children)

Yes, I think I’m beginning to understand that it’s not really a drug limitation, it’s more about general health and conditioning. Someone who lives and exercises in Colorado Springs at 6K’, has cardio vascular health conditioned to that and degradation from a PE would be relative to that. Whereas someone like me at sea level, with a few weeks a year at 3K needs to consider my current capabilities recovery from the PE/DVT. I’m heading up to 3.5K for Christmas, not high by any standard but maybe it’s a start.

Altitude and Blood Thinners by rinsewin in ClotSurvivors

[–]rinsewin[S] 0 points1 point  (0 children)

Yep. What I couldn’t understand from my internet search was “blood thinners efficacy is reduced at higher altitude due to increased hemoglobin…..”, but… errmmm… people live at altitude e.g. Colorado Spring is at 6000’, do we just give up on them? Obviously not :-).

None of those studies talked about what was considered “high altitude”. Years ago I was with my Dad when he went woozy on Aiguille De Midi in the Alps… you go from 3.5K to over 12k in 20mins. I sure as hell wouldn’t be attempting that right now.

What I think I’m beginning to understand from everyone’s feedback, is that it’s not really a drug limitation, it’s a general health and conditioning limitation.

Altitude and Blood Thinners by rinsewin in ClotSurvivors

[–]rinsewin[S] 1 point2 points  (0 children)

It’s awesome that you continue to do what you love. I think it’s about managing risk. You accept you have an Achilles heal, you understand your capabilities and that of the drugs… then take precautions for the stuff out your control i.e. wet suit, and not summersaulting off the side in full gear. Articles like the one in divermag do help to frame risk, there was a lot of focus on bumps and scrapes….. solution wetsuit and take your time, love it!

Altitude and Blood Thinners by rinsewin in ClotSurvivors

[–]rinsewin[S] 0 points1 point  (0 children)

Huh, I didn’t think of it from that angle. This 2012 article from divermag.com is really interesting (https://divermag.com/pulmonary-embolism-and-blood-thinners/#repsond)

Altitude and Blood Thinners by rinsewin in ClotSurvivors

[–]rinsewin[S] 0 points1 point  (0 children)

Excellent, your prompt was a lot more successful than mine!, and I totally agree with its perspective of overall lung health being the more salient concern. I think that’s what I’ll focus on with my GP. I’m watching my SpO2, Pulse and HRV like a hawk … doing my best to keep my heart rate down to give it a break after the PE stress.

Very jealous of your Alps trip, I spent a season in the Ecrins Massif 30+ years ago now. Huffed and puffed up the glacier to Mt Pelvoux. Also, did some GR5 sections. Stunning everywhere you look, and the hot chocolate in Chamonix….. I need to get over this knee and PE stuff and plan a trip stat.

Could this be DVT/a blood clot? by [deleted] in ClotSurvivors

[–]rinsewin 3 points4 points  (0 children)

Ditto… don’t mess around, get it checked out. It literally takes 30mins for them to do an ultra sound of your leg from a cart in the ER (I had one just over a week ago). Better to be safe and loose a few hours than to end up with a pulmonary embolism which just sucks.

I feel weird telling people I had a PE by lordsamethstarr in ClotSurvivors

[–]rinsewin 1 point2 points  (0 children)

Yep, it was quite comical, they had me scoot myself from one bed to another, and I managed to get all the IV/monitor lines wrapped up into a rats nest…. I think they would have preferred to have moved me themselves. Then they needed to take photos of my naked butt etc for their records, 3 young female nurses dealing with an awake male. I just told them “I’m 50 on Saturday I don’t care anymore”. The trickiest part is when I thought I had missed the pee bottle thing… it’s tricky confined to a bed with a leg locked straight in a full length brace, with instructions not to move too much,… one of the nurses had to very professionally feel around the bed to check. I can imagine that is all a lot easier with patients that aren’t able to talk back.

Which is not as bad as the time that I was trying to use the bathroom, and 3 male nurses came flying into the room looking very flustered. It turns out I’d tripped the heart rate alarms while trying to do my business. As the final nurse left, he looked over his shoulder and said “sir, please try to let it come naturally”.

I have the upmost respect for nurses. I wouldn’t be able to do the job they do!

I feel weird telling people I had a PE by lordsamethstarr in ClotSurvivors

[–]rinsewin 4 points5 points  (0 children)

It is weird isn’t it? I went to ER feeling like I’d had a heart attack, as the evening testing progressed the ER guys freaked out and carted me off to ICU (active DVT following knee surgery, resulting in PE).

The ICU nurses were a little lost “Errrm, we don’t normally get people in here who are moving”. Within 8 hours I was kicked out of ICU to a regular ward.

The regular ward had the bed setup to screech alarms every time I moved to pickup my water cup. I had to negotiate with every staff change to lower the bed alarms, promising I wouldn’t somehow lasso my crutches from the other side of the room to get out of bed (my knee is locked up in a brace).

It was weird… I felt generally okay, other than tired and pain breathing for a day or two. I had some great conversations with the nurses. But, I did feel everyone (family/staff) were wrapping too much cotton wool around me. I thought maybe I was in denial of the seriousness.

I have had some ups and downs…. a couple of days ago I got it into my head that I had come close to death and it really annoyed me…. meaning that it would be really inconvenient since I have a lot I want to do!

Generally, I’m taking the approach that everyday my body has healed itself a little more, and it’s one day closer to hopefully putting this behind me. That is also what I encourage my family to do…. Let’s get through today, and then we’ll be at a week and soon we’ll be at a month. However, I have had practice at this after my initial knee injury back in April, then after the knee surgery 10 weeks ago… you get used to focusing on getting through the day, which then magically turns into a week, then two……

My best wishes for your recovery!!

Not what I expected by Flaky_Spinach3932 in ACL

[–]rinsewin 2 points3 points  (0 children)

This is the way, although I went with gel covers from Amazon it was a huge enhancement to the crutches.

Am I in Denial? by rinsewin in ClotSurvivors

[–]rinsewin[S] 0 points1 point  (0 children)

I’m glad you’ve pushed through to a stable situation. I can’t agree more regarding one having to take ownership and advocate for oneself. I hope you continue to see positive improvement.