Over the last week I’ve had several follow ups regarding my sleep apnea and my blood clots.  Last week I saw the lung specialist who ordered the sleep study for the first time since my hospitalization.  We went over the results of the study, plus my CPAP machine has a smart card and they dowload data from it and print a report on that info!  Pretty cool.  She told me that I have severe sleep apnea – anything over 30 AHI (the index of apnea – pauses in breathing, added to hypopnea – obstructed shallow breathing) is considered severe sleep apnea.  My AHI was 103!  The data from the smart card showed that I have used my machine every night since I’ve had it (A+ for me!) and that with treatment my index dropped to .1 AHI.  It is doing the job quite well!  She was extremely pleased with the results and also with the weight loss I’ve had.

 I met with my thrombologist today to go over the results of my latest echocardiogram and leg ultrasound.  My heart is doing much better!  That was great news.  Apparently it was in pretty bad shape before – there is some kind of back pressure that takes place from the lungs to the heart when you have lungs full of clots.  I saw on the intake sheet the nurse was working with as she checked me in, that it said “extensive PE” which stands for pulmonary embolism or clots in the lungs.  Anyhow, my lung clots have cleared up and my heart is doing much better.

 The ultrasound showed that I still have some clots in my legs.  The doctor wasn’t entirely surprised by this.  He said it can take some time for them to completely resolve in the legs.  He wants to keep me on blood thinners for 3 more months, then do another ultrasound and follow up.  We’ll discuss long term options and risks then.  It sounds like there’s a pretty good chance he will recommend that I stay on blood thinners long term.  He said that often when you have clots, there is something specific you can point to as the cause, like a broken leg or surgery or something like that, and in those cases, 3-6 months treatment is sufficient and the risk is low of developing more.  In cases like mine where there is no specific known cause, the risk of developing more is a little higher and that’s when they consider keeping you on the drugs to lower that risk.  There are also genetic factors in my family and the minor heart defect I mentioned before are also things that are a part of the picture of my future risk.  We’ll discuss the options at our next visit and get into more detail about that.

 We also talked about the CI surgery and what this means for that.  Basically, I will need to wait until after the next appt so at least another 3 months.  If I continue taking this medication long term, then we can work with it around the surgery if/when I decide to have it.  It might involve doing some of the shots again and stopping the drug for a few days, but he said it can be done with fairly low risk.  Also, we discussed having my trap removed.  He would prefer it not be in there too long and feels I’m to a point now where it can be safely removed.  I’ll probably wait until after the wedding and our trip, but then schedule it sometime in the next couple of months.  It’s a fairly simple outpatient procedure – basically the same as putting it in place.  He said they go in through the neck to retrieve it.

 We talked about a few other items, too.  He told me that I should try to keep my heart in the fat burn zone rather than the cardio zone at this point when I workout and gave me some tips about that. We discussed the possible connection between all of this and my hearing loss.  He doesn’t really know of anything in his field that would explain it either.  Oh well – it was worth asking.

 I’ve noticed over the past couple of weeks that any time I blow my nose I hear air whistling through my ear!  That’s not normal and made me wonder if I had a hole in my eardrum.  My hearing specialist told me that one of the possible complications of the steroid injections in the eardrum is that the hole from the needle might not heal but they could do a procedure to fix it if necessary.   That is what my guess was as to what’s going on.  I asked the doctor I saw today if he would be willing to take a look and see if there is a hole in my eardrum  and sure enough there is.  He wouldn’t speculate as to what caused it, but I feel confident that is what it is.  I guess I’ll contact the hearing doc about that tomorrow.  I’ve been swimming for exercise and love it and I’m guessing they’ll make me stop until that’s healed, which will be a bit of a bummer for me.  Hopefully we can work around it.

Chet was able to go with me to my appointment and later we discussed some of the pros and cons of having the CI surgery at this point.  Originally, I was planning to go for it.  I could see no reason to wait.  Now, I’m leaning more towards waiting.  It turns out that I’m functioning better than I anticipated when I add lip reading to trying to listen with a hearing aid.  It’s still not a no brainer in my opinion.  I could lose the rest of my hearing tonight.  It could be days or weeks or years.  There’s no way to know.  With the new things that have happened and the treatment I’m getting, it doesn’t seem like quite as much of a forgone conclusion that I will lose more hearing soon.  If the clots or what’s causing them have anything to do with it being on blood thinners might make a difference.  If the lower oxygen levels during my sleep over the last years before I knew I had sleep apnea were a contributing factor, then it might make a difference.  Maybe the natural hearing I still have is better than the best result I would have with CIs.  Maybe I would hear better than I have in years with CIs.  Right now, Chet and I are leaning toward going ahead and ordering a new hearing aid for the side that is helping the most.  I don’t want to do the bicross again.  It’s been long enough since my last hearing aid purchase that our insurance will cover another one.  I will use it for as long as it helps me and then if I have another episode, it will clearly be time to move ahead with the CIs.  We may change our minds, but that’s what we are leaning toward at this point.

That’s pretty much the update.  Still have a ways to go, but things have improved greatly and it was all good news!   Thanks for your prayers!  

Yep, I used the term “hunky dory.”  Got your attention, didn’t it?  🙂  Just got back from my ASL class and it went great.  I am really enjoying it.  I get teased by my family about talking to myself (I’m actually thinking out loud rather than talking TO myself) and I realized on the drive home that I was doing that in ASL!  I guess that’s a good thing!   I really didn’t realize initially that I was doing it.  I still have a very long ways to go to communicate effectively in ASL, but I am starting to get a small base to work from, and it helps tremendously.  I still need lots of help coming up with the signs for the words I want to say, but it’s coming along.  It makes me want to practice practice practice.

The diet and exercise plan is really going great.  I’ve lost 16.3 lbs so far.  I can tell that my heart is already responding to the exercise in a positive way.  I am having to work a little harder to get my rate up to 130 whereas before, I was constantly having to work to get it DOWN to there! It is also recovering much more quickly when I do need to stop and let it go down.  Still have a long ways to go, but I’m really feeling good about it all so far.  I have been very surprised at how easy this has bee so far.  A friend recommended an app (thanks Louise!) that has helped me tremendously!  It keeps a running total of your calories so you always know how many you have used and how many you have left.  It also can search for the calorie content of foods or you can scan the UPC codes right into your phone.  I love that feature!  You can also find many restaurant foods on it which helps with planning meals out.  Overall, this is very doable for me and is working well.

I found some very interesting information today online.  I am signed up for “My Chart” with my clinic where you can access your test results and things online.  I was going through some of that stuff today and saw that the results of the heart stress test I had in 2010 were on there.  I was reading through the results and saw that they found something called an “atrial septal aneurysm.”   From what I gathered from various articles I googled on the topic, it seems that it is something that might not cause you any problems, but can make you more susceptible to strokes and that it has been linked with  several health problems, including clots in your arteries .  It looks like it is tends to run in families and is basically a mild abnormality of the heart.  There was one article that said there’s a possible link to blood clots in your whole system.  When I had they test done, they told me that everything looked normal.  No one mentioned this at all.  It might not be anything , but the information I read was enough to make me feel kind of excited that this might have something to do with all of the stuff that has happened.  I could definitely be wrong, but it’s worth asking the doctor about when I go later this month.  Who knows?

I’m thinking about Cody and Jessi’s upcoming wedding every day now!  I’m really getting excited.  Jessi and I got to spend some time together visiting yesterday, and it was so nice.  She and I have a friendship of our own, in addition to the fact that she’ll soon be my daughter-in-law and I love that!  Final details are in the works and I’m looking forward to a beautiful day of celebrating the beginning of a new family and the start of their life together.

It seems like lately things have been so busy in my life!  It feels nice for it to settle down just a bit!  I’m enjoying some down time now- it won’t last.  I was thinking this morning that this week and next is a little break before things get busy again, and I was trying to figure out when it would all settle back down.  I decided after August is when it would cease to be busy, then I realized that maybe it will always be busy and I should just enjoy these short little breaks!  It seems like every time I think things will settle down into “normal” again something new comes along,  I guess that IS normal.  These “breaks” however, are when I need to and try to focus on deep cleaning my house and getting some of the many outstanding projects at home done….I guess life is always a certain amount of busy!  Makes me appreciate those moments each day when we can “be still and know that I am God,” and when I can enjoy something simple like a cup of coffee or an hour or two visiting with a friend.  I guess this is an area where thinking small is a good thing!  

I’m happy to report that so far my hearing seems stable.  There hasn’t been any “popping” lately, although I have noticed when I blow my nose there is a whistling sound in one ear – I hope that is just some fluid or congestion working it’s way through.  

I attended the ASL class I mentioned before on Tuesday and really enjoyed it.  It will be great practice for me and a good opportunity to learn a little bit more.  This class is a Tier 1 Level I class for all ages.  There were about 15 people there, and they ranged in age from around 10 to around 65!  Almost the entire class was conducted with “no voice.”  It was nice to already know some basics and not be quite so overwhelmed with EVERYTHING being new.  It gave me some confidence and gave me the opportunity to focus on the things that were new to me.  Debbie had a deaf co-teacher that night and I spent some time talking with her after class.  Before, I was really shy and nervous to try to talk to a deaf person, but this time I really didn’t even have to get up my nerve at all.  There were a lot of things I would have liked to say but didn’t know how, and there were a lot of things that I had to tell her I didn’t understand that she said, but overall we had a fairly long conversation and did communicate!  She had rubella when she was 2 years old and that’s how she became deaf.  She was put in a public school until she was 12, then a deaf friend’s mom found a deaf school and she learned ASL at that time.   She told me how difficult those public school years were – she was treated like she was dumb because she didn’t do well but it was mainly because she didn’t know what was going on and couldn’t understand what was said in her classes.   My heart went out to her.  Stories like this seem to be quite common among deaf people.  Most of the time the parents are hearing and very few actually learn ASL.  That really blows my mind.  I can’t imagine not learning whatever I needed to to be able to communicate effectively with my child and do whatever I could to help them feel (and be) included in as much family life and social life as possible.  

Things are also going well with the diet and exercise plan.  It is working for Chet and I both and we are finding foods we especially enjoy and workouts that we also enjoy (at least to a certain extent!).  I’m on the lookout for main dish recipes that are low calorie and nutritious so if anyone has one they know is good, please let me know.  One of the things that has an impact on the dosing and effectiveness of warfarin (generic name for Coumadin) is leafy green vegetables and any other veggies that have vitamin K.  Part of my healthier eating plan involves increasing my fruit and veggie consumption and also includes some salads and other vegetables on the “list.”  It did, in fact, make a difference in my INR number (bloodwork) last week.  The clinic told me that it’s ok to have them, as long as I am consistent, so now I have to make sure that I eat around 2 cups of leafy green veggies or their equivalent every day.  I’ll have another blood draw tomorrow to make sure my numbers are where they need to be and there isn’t any other adjustment to my dosage that needs to be made.  I’m looking forward to my follow up doctor’s appointments (mostly next week) to see if I still have any blood clots and if my heart is beating normally again, and to discuss my sleep study and the results of that.  I think I am still have some irregular heart beats.  I’m hoping that if that’s true, it will show up in the echocardiogram.  Maybe I’m wrong about that.  I hope so.  It makes me pay close attention to the doctor’s instructions when I exercise.  I sure don’t want to have additional heart problems.  Hopefully it won’t be long with diet and exercise that my heart will respond in a positive way and will be functioning effectively and normally once again.

In some ways, it feels like I don’t have much to say on my blog -I guess that’s a good thing.  It means that I’m not feeling particularly stressed or dealing with major changes in my hearing.   I feel like I’ve made the adjustment to my new hearing level and am functioning quite well all things considered.  I guess I will just have to wait and see what God has in store for me in this area in the future.