First post from Maryland - advice and support needed!

[MarkZ]

And now blood in urine. Why? Heparin? I feel like my body is trying to nickel and dime me into a two week stay.

 

[caro]

I’m so sorry. Must be heparin. I got heparin shots. Maybe they can do shots vs a drip?

I’m sorry you are having so many migraine auras. They are the worst. Nurses may be able to give you magnesium and riboflavin. I took them every day for a couple years before surgery, and they gave me those supplements when I was in step down. Can’t remember when they let me take baby aspirin again, but I’ve found that one baby aspirin a day helps a lot to prevent my migraines. I take 400mg of magnesium glycinate and 400mg of magnesium oxide a day as well as 400mg of riboflavin. Magnesium in particular can help prevent auras.

Dr. Johnston (who works a lot with Dr. Svensson) told me he had a patient who had a ton of migraines with aura after surgery but they did taper off and return to pre-surgery numbers. I had zero migraines for at least a month after surgery and then a bunch in a couple of weeks. Now it’s returned to pre-surgery numbers (a few a month).

 

[MarkZ]

INR 1.7 again this morning. And for the fourth straight day, they seem unwilling to up the dose beyond 6 again.

 

[slipkid]

.... constant migraines. I’ve had like ten migraine auras the past 36 hours.

Wow. That even beats my record. I had several days with multiple migraine auras in the hospital, and afterwards I had a minimum of one per day at home for the first month post-op (sometimes more and sometimes while asleep that I only noticed if I happened to be awakened).

After a month or so they tailed off over the course of the next 6 months or so but I was then left with pretty much about 5 per month ever since. With the exception of when I was placed on metoprolol about 2 years ago after getting a stent. I could not function on that stuff though, felt like I was underwater and totally exhausted, drained, and sleep deprived, could do nothing but sleep on that shhhht until the a-hole Drs finally admitted that that drug was the problem and cut my dose in half which did wonders. Still had some issues on it though and had to stop it about 2 months in. A pleasant aftereffect though was that I then did not have a migraine for months and months even after stopping that drug. They slowly returned and I am back to about 5 a month again. Which I would rather have than be on that drug.

 

[MarkZ]

Thanks that’s helpful to know. I’ve been on metoprolol for a few years so I’m thinking that may not be the culprit here. Fortunately I’m down to just one aura today.

 

[Amy]

being your own advocate; and by that I mean, specifically, being sure enough in yourself to question why things are being done

So....why are they not increasing your warfarin dose? If 6 mg was enough I think you’d have seen an increase after two days. I would get a second or third opinion about that. Not that it’ll be fun. But... whatever gets you the f&@* out of there.

 

[afraidofsurgery]

Hi! I had the same hospital experience after my AVR - my INR would just not budge. I can't recall if they did increase the Coumadin dose, I think the approach is generally very cautious as to not overshoot the target INR. I ended up going home on Lovenox (sp?) since I started making a fuss I wanted to go home. A few years later I had the opportunity to speak to a researcher at a major academic medical center who studied patients with very high coumadin metabolism rates due to a genetic Cytochrome P450 variance and he said I was a 'high metabolizer' but not in the 'resistant' category. I still often get eyebrows raised when doctors look at my maintenance dose (10 mg/5 days, 15 mg/2 days).

 

[MarkZ]

How was the lovenox? They mentioned that for me.

 

[slipkid]

How was the lovenox? They mentioned that for me.

It's a belly shot injection which I found to be torture. Not an ez thing for me to do (easier when in the hospital and nurses were doing it "to me" but not fun then either). Not to mention that only a week on that I had no normal looking belly left, everything was blood red purple black & blue. Never saw anything like that.

 

[kevanndo]

How was the lovenox? They mentioned that for me.

The lovenox does not have to be a belly injection; it can also be given in the thigh or even the arm, I believe. Several years ago, my daughter had to bridge with lovenox twice a day for several weeks, and I gave her the shot in her thigh, alternating thighs each time. It is known to be a rather painful shot, and it did cause horrendous bruising, but because of an invasive GI procedure she was having done, we had no choice.

 

[MarkZ]

So....why are they not increasing your warfarin dose? If 6 mg was enough I think you’d have seen an increase after two days. I would get a second or third opinion about that. Not that it’ll be fun. But... whatever gets you the f&@* out of there.

Amy, I was thinking of you this morning when I convinced the fellow to increase the dose to 7.5 after he said he was going to just stick with 6 and hope it goes up. Thank you.

 

[Amy]

You’ll be seeing your current INR every day, and can always reduce the dose a bit if you do get out of range. And better to be high (well, 3s and 4s) than low, anyway.

Hope everything goes well for you.

Have you found the secret graham cracker drawer on your laps around the unit? It’s the little things, isn’t it?

 

[slipkid]

The lovenox does not have to be a belly injection; it can also be given in the thigh or even the arm, I believe. Several years ago, my daughter had to bridge with lovenox twice a day for several weeks, and I gave her the shot in her thigh, alternating thighs each time. It is known to be a rather painful shot, and it did cause horrendous bruising, but because of an invasive GI procedure she was having done, we had no choice.

Maybe I don't have enough fat on my arms or thighs, I dunno. When I was in the hospital recovering from OHS every shot was in my belly, and when I had to bridge over to Lovenox from warfarin and then back again every shot had to be in my belly, I was given zero options for anywhere else, even when I showed them I barely had an inch of tissue left that was not so black blue purple & red that I was too afraid to continue to do anything further in that area.

I also have a long story about the techniques used for the belly shot by the nurses, by what my sister told me (who used to be a nurse) vs what my own Dr told me to do then did himself, which I do not even want to bother to relate other than was yet another illustration of how effed up Drs are.

 

[caro]

A really nice pharmacist at CC controlled my dosing and did a great job of it. I had heparin injections to stomach. All was fine on left side of stomach. Had hematoma form when they gave it to my right side on last day. Had to go to Cleveland Clinic ER couple days later to make sure it wasn’t appendicitis. The CC cardiac nurse hotline advised me to do that. Luckily I was still there. I thought staying there a few days after surgery was nice for peace of mind even though I really wanted to go home.

 

[Amy]

Hey, Mark, I just found this, which might be helpful.



I wish I’d taken things like this more seriously. The recommended arm stretching cc has in its binder may have contributed to my incision not healing.... in hindsight I’d use these stretching- and getting-dressed-guidelines instead.... just be careful, and don’t be opening windows and car doors and refrigerators 20 times a day like I did... (I thought if it didn’t hurt, or only hurt a little, it’d be okay, but it’s not).

Take care.

 

[MarkZ]

So I’ve been home a couple days now. Physically I feel fine, very little pain really, but haven’t sneezed yet, so..

Mentally I still feel like I’m in a fog even though I’m not taking any pain relief other than Tylenol.

Had my INR checked yesterday and I’m at 1.9. I go in tomorrow so hopefully I’ll be up to 2.0 so I can stop the Lovenox injections.

 

[Amy]

The mental fog’ll go away. Just rest a lot, take it easy, don’t do too much or twist your upper body and stuff. Taking naps? Good excuse to start! ; )

 

[pellicle]

Mentally I still feel like I’m in a fog even though I’m not taking any pain relief other than Tylenol.

that's how it is ... I couldn't add up numbers for weeks without paper.

Had my INR checked yesterday and I’m at 1.9. I go in tomorrow so hopefully I’ll be up to 2.0 so I can stop the Lovenox injections.

to save me fishing around how many days of dose and what doses?

the injections are a pain in the arse, but its brief

Best Wishes

 

[MarkZ]

My memory may not be 100% on this. But they didn’t start the warfarin until day 4 or 5 because I was in the ICU and they don’t start until step down. The step down delay was because they didn’t have enough beds, not because I needed icu. I believe it was 5mg for 2 days once I hit step down. My INR was at 1.3 and they decidEd to increase to 6 mg. My INR rose to 1.7 after a couple days and then went back down to 1.6 on my last day I believe. On my discharge day they increased to 7.5. Two days of that and my INR Wednesday was 1.9. I’ve remained on 7.5 mg since and visit the Coumadin clinic tomorrow afternoon.

 

[MarkZ]

My dreaded first sneeze just came five minutes ago on my 6 week surgery anniversary. Didn’t hurt much at all. I guess all that hard work holding off sneezing all this time paid off.