Neil_B

On reflection and reading, I can't help but think I aided the development of the blood clot in my lungs. Obesity is a contributing factor, and I allowed my weight to balloon during my inactive period prior to surgery. Clydes and Athenas, you too can be at risk for a PE.

Also, I'm not out of the woods yet. Lovanox and Coumadin will reduce the risk of further clots and help my body 'eat' the existing ones, but I'm still at risk, particularly now when I'm sedentary and housebound.

SFGary

Neil_B, this situation looks like a Catch-22. Will you be taking these clot busters till you get back on yr. feet and be able to exercise a bit? Maybe you should also be cutting back on the sausages and other fatty foods till you are back on your bike...

Neil_B

Standard protocol for a PE is Coumadin for six months and Lovanox until the Coumadin level in the blood reaches a "theraputic" stage. As I get active I'll naturally begin to lose weight again. Obesity is a risk factor, yes, but the main reason I had clots form in the legs and spread to the lungs is that I had surgery on my legs and spent days on my back unable to move.

Also, I've eaten so little over the past three weeks, and especially the past week, that I don't feel I've overindulged in any sense. For instance, I've eaten less than 300 calories today - low fat pasta primavera - and I'll have a normal dinner tonight.

Neil_B

Come on Iron Chef, start throwing dates around. I want dinner. :-)

thestoutdog

You are welcome sir!

Rowan

Glad to see you are home and conversing again, TH...

A word to the wise on Coumadin and your recovery. Don't create great expectations on the exercise front. Go in stages and try to avoid getting totally frustrated with progress with fitness levels.

You might find that your energy for exercise is quite low for a while. Machka found out this after she was put on Coumadin for a year after getting clots in her leg after flying to Australia.

No matter how hard she tried, her output was always below her expectations, and its only been in the year or so since going off Coumadin that she's been able to do centuries and other LD rides consistently. Not that you were aiming to do centuries, but it does illustrate the point, and more so with your plans for an extended tour. I suspect the knees will be shipshape before your fitness.

In addition, you and patentcad make odd bedfellows, so to speak. He had a bout with PEs not so long ago, and now a knee has been giving him merry hell..

Neil_B

I was unaware of your wife having blood clots, Rowan. I'm sorry the two of you suffered with them. It must have been hell for Machka, as energetic as she is.

I'm sorry for PCAD, but I thought his knee problems were long-standing. He was posting about alternatives to replacement a couple of years ago.

I'm already experiencing the effect of the blood thinners, as my energy is pretty much sapped from moving around the house. I'll keep in mind that this too shall pass but I'll have to take baby steps as I work to restore my fitness.

Neil_B

BTW, the squeamish might want to skip this photo:












My left knee eight days after surgery. The swelling is setting in. The surgical dressing, which looked like a cross between a Band-Aid and a slice of a golden tan bike tire, came off the night before. The incision is about six inches long, and closed with sutures and surgical glue. When it heals all that should be visible is a thin white line. The moisture in the photo is a cream the rehab hospital applied to reduce some of the redness. The big white clothes on either side of the leg are ice packs - I'd just gotten beaten up in PT when I took the photo.

Peter_C

UGH! I never ever even though about me being put on blood thinners for life causing any kind of energy drop/lose~! YA! One more issue to deal with. After having Multiple PAs (twice) we learned that I have a genetic blood issue that creates clots constantly, so must now be on blood thinners for life.

I wonder? if anything can be done to combat the effects?

goldfinch

Fatigue is a side effect but I do not believe this to be a common side effect. (Spouse and certain relatives on Coumadin ).

https://www.drugs.com/sfx/coumadin-side-effects.html

magohn

My wife is on Coumadin (heart valve) and last year she rode 203 miles over two days

Peter_C

Well, I've been on these meds for a year now, so I imagine how I am is how I am. I have no choices to make here either, I was just shocked to read it. Didn't mean to sidetrack this topic about Neil and his knees.

Neil_B

No sidetracking at all, Peter C. This is all on-topic.

Neil_B

Time to motivate myself. I start each day strong and then fade as my strength gives out. So here's a reminder of what I'll be doing soon:

First 5k:



72 mile ride into Philadelphia:



Hike up Mount Tom in Pine Creek Gorge:

magohn

Nice

Neil_B

Thinking about this, Peter_C, the fatigue Rowan and others mention might be a case of the confused centipede for someone like you. Poor centipede is walking across the floor until someone asks which leg it moves first. It then stops walking while it broods on a problem it never noticed but just learned about. I don't disagree with Rowan or Machka about fatigue from the drug but you've probably discounted it years ago because you've lived with it so long.

Neil_B

The visiting nurse has come and gone. I'll get the results of the blood draw tomorrow. Meanwhile everything else looked good: blood pressure, O2 content of blood, pulse, incisions, leg swelling, breathing.... it takes me five seconds to reach a standing position. Nurse was surprised I was only on one pain drug (Lyrica for the nerve damage in my feet); I explained I was a differently abled athlete, and soreness and stiffness are what I'm used to.

Tom Stormcrowe

I suspect it's in part adaptation, and in part conditioning reducing the side effects over time.

Neil_B

Home PT began today. I didn't get beaten up yet..... that's the second visit Thursday.

Neil_B

On Monday I had blood drawn for my INR levels. I called my doctor Tuesday afternoon looking for the results. They hadn't received them. I called the Home Care Network (run by Jefferson Hospital in Philadelphia) looking for the results. They said they would try to reach the nurse and the lab (Qwest Diagnostics). My doctor called me back in a high dudgeon - "I have a patient with a life-threatening condition and a bleeding risk and I don't have blood readings since Friday morning?!" I called HCN who told me the nurse had the day off and she wasn't responding to phone calls, and the lab claimed they never got the sample. After another call from my doctor, who calmed down enough to remember I'm the victim here, we discussed options. Instead of sending me immediately to a local hospital emergency room for a blood draw, he arranged for a mobile lab to draw blood at my home this morning. Meanwhile what happened to Monday's sample we don't know. Perhaps the nurse is walking around with a vial of my blood in her pocket? Women have kept odder things of mine....

My doctor in the meantime reviewed my scripts and history from the hospital, and considers the blood monitoring as "inept." I've been bouncing between 1.6 and 1.9 INR for ten days and no one increased my script for Coumadin. Also, Lovanox comes in a 150 MG needle, but the hospital doctor on advice of the pharmacy gave me 60 and 80 - thus shorting my dose. So my doctor has written new scripts which I can pick up tomorrow at my local pharmacy, subject to a possible change depending on my blood reading this morning.

Physical therapy started today.... sort of. It was more instruction than suffering. The sufferfest starts Thursday......

Meanwhile I'm coping as best I can. I still can't get out of the chairs in the living room. I spend all day in the dining room, since those are the only chairs I can get out of. I'm a little more mobile in the kitchen, and I'm making my own meals - instant, of course. The commode my insurance paid for is destined for eBay, since I can use the toilet without problems. The shower, however, is another story. The head is a non-standard "fixed" model and I need a hand-held lest I flood the bathroom when I bathe. We got this last night and I hope to be able to shower today. I've been using my camping trick of cleaning myself with alcohol hand sanitizer, but that only works so long. I'm dirtier than I've ever been. I had a dream my photo was used for a story on Occupy Wall Street in the Huffington Post....

SFGary

Un-effing-believable! all I can say Neil_B is: "Stiff Upper Lip." Incompetence surrounds us. What you do need is a nice shower...

Rowan

I must say, you have kept a high level of humour through all this.

Machka's INRs bounced all over the place as well. It was one of the reasons why she remained in hospital for a full fortnight before they stabilised enough for her to go home. There were similar issues with Coumadin dosages as well, as her INR continued to rise and fall. You may well go through similar experiences despite what your doctor says.

Also, has he checked for any genetic predisposition to forming blood clots. Eventually, this was tracked down with Machka. And oddly, there are some high-iron vegetables she has to avoid, such as spinach and silver beet, because they can trigger the predisposition.

It's somewhat ironic, isn't it, that your primary issues -- the knee replacements -- have almost taken a medical backseat to the life-threatening INR issues.

Neil_B

Well, the two conditions are linked. Intertwined, more likely. The swelling in my legs, for instance, is the source of the PE, and the clots in my legs keep the swelling up. My right foot is an inch and a half bigger than my left at the moment, and it's all swelling.

At the moment there's no indication there's any cause for the clots other than the surgery. I never had PE symptoms when I was 400 pounds, and aside from some severe chest colds the past couple of winters I've not had the shortness of breath I had with the PE. Now, what my doctor and I might decide in the future is still a question.....

I've heard of the odd dietary restrictions on Coumadin. I've not been advised to avoid anything aside from cranberries, which hurts because I love cranberry juice.

I agree with my doctor's comment on the care at the last hospital, but that's not just for the reason's I've stated. Nursing there left something to be desired. They forced me to be bedbound because of the clots but then did a horrible job attending to my hygiene when I needed to relieve myself. (Yes, it's a nasty job, but if you can't handle it, why go into nursing?) And the fluctuation in the Coumadin level could very well be from skipping a day - I didn't get the pill the night I was admitted.

One possible reason Machka's, and my, levels bounced around as they did could be from hydration. I was very dehydrated the last few days, and basically stopped eating and drinking. I wonder if Machka's problem was the same.

As for the sense of humor, if I didn't laugh I'd cry. I don't like crying.

Neil_B

Sometime today. I hope. Otherwise it's a sponge bath again and trying to wash my hair in a basin. I wasn't smart enough to get it cut short before surgery. Yuck.

Tom Stormcrowe

Neil, you can use Johnson's baby Wash in the basin and a wet washcloth and scrub and towel dry your hair and get it reasonably clean without a rinse and no scalp irritation. That way, you can sit in a chair and wash the hair and not risk falling, for now, until you either get your bath bench for the shower, or better stability.