up all night

[andrew]

Hey Jack, how did you go? Hope you're doing ok mate! Don't make me come over there!

[timbo vic aust]

thinking of you too mate hang in there and be strong .

[elephant]

I was thinking the same thing. Hope all is well Jack.

[DuaneHart]

Sagnye, it didn't take long at all to get used to it. There are many different kinds of headgears. I started with a mask that covered my nose with this plastic apparatus that was connected to the headgear and was terribly uncomfortable. Now I just have this head gear that you hardly notice wearing and use what are called nasal pillows that are simply cushions that fit over your nostrils. I can lie on my back, sides or stomach and have no problems. If you go to resmed.com thee are pictures of different types. I'm sure JHU will have different for you to try also. Like I said, I have a ResMed CPAP and use Swift Nasal Pillows. I very much recommend you have the sleep study done. If you are stopping breathing and wake yourself up snoring it is not good. Your brain is not getting oygen when this happens--had I not done this I would probably not be here to tell you about it. I don't mean to scare you but sleep apnea is very, very serious condition! My son, brother-in-law, brother and mother-in-law all now have CPAP and are all grateful that I pressed for them to have a sleep study done. They all agree that they feel sooo much better, more rested and more energy. Keep me posted!

[DuaneHart]

One more note about the sleep study. I also thought that I was up all night with them wiring me up and things, but that is how they get all the measurements for your brain activity, oxygen levels, etc. Kind of a bother, but is necessary to do.

[Jack]

Went to the hospital on Friday and they would not let me come home.

I had a scan, X ray and all the usual tests and it seems that I have pluracy in my left lung that was causing the pain and a clot on the right lung causing the shortness of breath. I managed to get let out last night after a lot of discussion amongst the various specialists and I'm now on a home care scheme with visits from an anti-coagulation nurse.

Looks like I'm on warfarin for good now.

[elephant]

Wow what a combo. Glad your home to celebrate Christmas with your family. Sorry you have to be on warfarin for life, but it will save your life.

[Sangye]

I figured they kidnapped you and held you in the hospital, Jack. I'm sorry it turned out to be a clot AND pleurisy.

I have 3 suggestions for you :
1) Get a hematologist to monitor this aspect of your care. A regular PCP can manage it for a non-Weggie, but it can be trickier for us.

2) Ask for a home testing monitor. You can test your INR weekly with a finger stick, like a blood glucose meter. Without that the usual method of monitoring is via weekly/every few days blood draws until you're at a stable level, then once a month. This is very hard on your veins and quite dangerous. INR levels can fluctuate dangerously high (risk of hemorrhage) to dangerously low (risk of clots) within a month and you'd never know it. The home testers have greatly lowered injuries.

3) Your hematologist should have you eat your regular diet (ie as much vitamin K foods and supplements as you want) and adjust the warfarin to you. NOT the other way around, which is how they've traditionally done things--limiting vitamin K foods just to maintain the INR.

I see the Chief of Hematology at JHU. Before him, I had PCPs monitoring. My veins are terrible. They had me terrified to eat broccoli (or had to eat the same amount every single day). I had a lot of trouble stabilizing my INR and got new clots. They never mentioned home testers.

I had so much trouble with warfarin because of that, that I stayed on the Lovenox (heparin) injections for 2.5 yrs. WAY too long. Painful and dangerous shots. My JHU hematologist was really upset at that. He said the monitors are just as accurate as vein draws. We've proved it, actually.

Now it's a total piece of cake. I don't change a single thing about my diet. When you have a home tester, you can see if you're starting to move too high or low. My hematologist taught me how to adjust my warfarin a bit if that happens. VERY easy.

I know you might feel like this is just one more dang thing to worry about, but I can't tell you how nothing it is. I take the pills (no side effects) and forget about it. Really.

[Jack]

Thanks for all the advice Sangye.

I've already been through this once with the DVT I had earlier in the year so I'm happy with the anti-coagulation unit they run here. It seems to have a good reputation with the other departments too and was one reason why they they let me out. Standard hospital practice is to detain you until its all sorted!

They have already taken on board my previous experience and started me on half the usual levels of warfarin. The heparin only continues until they can see the warfarin taking effect.

They are quite happy for me to eat whatever I like, but must tell them if I make any significant changes to my diet or drugs.

I might look into the home testing kit, but I don't want to get obsessive about this and last time, my test results remained pretty stable after a month or two of adjustment.

All advice gretfully received.

[jola57]

Get better Jack. That's quite a combo of drugs.