Most days when I blog, I’m mainly trying to keep you updated on what is going on with my hearing situation, and also trying to share with you anything that I think you might find interesting, or might not know pertaining to hearing loss, or an insight that I have learned from my experiences. Today, I am writing in part to decompress. I want to share what has happened, but frankly, it frightened me and humbled me and I feel that I handled it all just fine, but I’m truly thanking God just for being alive right now!

If you’ve been following my blog from the beginning, you know that over the past year I’ve experienced quite a few side effects from being on prednisone. One of those is fluid retention which involved my ankles being swollen (my face and neck, too) and being more out of breath than normal. I’m used to dealing with that. Even as I finished the prednisone recently, I noticed that those symptoms really hadn’t improved as much as I would have liked – only a little bit. I’m quite used to dealing with that. On Friday night, I met with Debbie to work on sign language stuff. During the course of that meeting I sat in basically the same position for several hours before I got up. My ankles swelled up quite a bit. When I went to for a bathroom break, I noticed that I was really out of breath – more than I’ve been even on prednisone. I just thought that I sat in one position for too long and decided to move around more, drink more fluids and watch my sodium. I also noticed that I developed some mild congestion during that time and a slight cough. Saturday, as I posted before, was a very busy day. It involved more sitting at a meeting and again I noticed how much my ankles swelled up (more than usual) and how out of breath I was. At the bridal tea, I had to walk upstairs to get to the room where it was, and I couldn’t believe how out of breath I was. It took a very long time for me to get it back. I was embarrassed and still just thought I needed to work a little harder at getting rid of any excess fluid. Sunday and Monday were the same. I also noticed some mild shakiness in my hands. By Tuesday, I woke up and it seemed like there was a slight change in the congestion in my chest. Just felt a little heavier. None of the other things had improved at all, and I had an uneasy feeling that I needed to get checked out, so I decided to take myself to the doctor. We had a big snow that morning and I had told my son to take my 4 wheel drive car to work. That left me with his car. I walked out and it was pretty buried in snow. I knew I wouldn’t be able to dig it out. I came back inside and called my doctor. They connected me to a nurse line, and long story short – she told me that I needed to get to an urgent care or emergency room right away. Chet came home a few minutes later and we headed to an urgent care. Once there, I was really out of breath even at rest. They did some initial tests and sent me by ambulance to the ER in St. Louis Park. There they told me that I had all of the classic symptoms of blood clots. My D Dimer (a blood test) was 5 which is 5x what it was a few years ago when they sent me to an ER to look for clots. I had noticed some soreness in an area behind my knee and in my calf that I those was muscular but turned out to be clots. When I change out of my pants at the ER my entire lower leg was bright red! Three years ago when they checked, they didn’t find any clots, but this time they found multiple clots in both legs. They knew because of my breathing that I also had them in my lungs. I was admitted and later had a CT scan that showed multiple clots in both lungs. One clot in one lung was particularly large and in a slightly worrisome position. I ended up having a vena cava filter placed which will catch any clots currently in my legs if any start traveling towards my lungs. It could save my life. I’m now home, but on Coumadin (an oral blood thinner) and also giving myself an injection each day of another blood thinner. That should only be for a few days until my numbers are in the range they want them to be and then it should be manageable with the Coumadin alone. My diagnosis – Deep Vein Thrombosis (DVT – bilaterally) and Pulmonary Embolism (PE – also bilateral). It’s sobering. The danger of having one clot in the leg is that it could travel to the lung. If it lands in the wrong spot it can be fatal. When I think about the fact that I have so many clots (I asked the ultrasound tech how many she saw and she said she didn’t count but it was a lot – that was just one leg. She said the other was the same. The docs also told me there were multiple clots in each lung) and the fact that even one can be fatal –scary stuff. Combine that with the fact that I had them for 4 days before I sought medical attention and that during those days I was home alone quite a lot…..so much could have happened. It didn’t and I’m here and fine. I’m not trying to be a drama queen, but it’s sobering. The doctor I saw today on a follow-up told me that his mother died from the exact thing that I have. Wow. I’m thankful to God that I am still here.

The primary cause of this for me is my weight. The chart used the term morbidly obese. I knew this already. I’ve been overweight enough to fall in that category for quite some time. I know that it’s bad for your health. I’ve tried unsuccessfully many times to lose weight. I am not stupid and I am well aware of the fact that I’m seriously overweight and also what causes that and what has to be done to rectify it. No one needs to tell me that. I know. I can assure you that all people who are significantly overweight know. Having other people point it out, or try to be the “food police” is not helpful. It’s actually harmful. It’s something I have to find within myself to do(with God’s help) and I haven’t been successful at that yet. Others can be an encouragement, but ultimately no one can make me do it and no one can do it for me. I don’t know how it is for other people, but for me it actually creates a stumbling block to have someone comment to me about how much or what I’m eating. It just makes me upset or want to do the opposite and “show them” that I can eat whatever I want. I’m not saying it’s the best attitude. I’m saying it’s where I am right now. if I’ve told someone I’m trying to lose weight or on a diet or exercise plan or that I’m looking for something along those lines, then having them ask how it’s going is encouraging. It’s encouraging if someone knows I’m dieting and they choose to bring something to potluck or flocks that is on my plan or if we’re going out with someone and a meal is involved or going to someone’s home and they consider that in whatever restaurant we choose or what they make for a meal in their home. It’s encouraging to me and welcomed if I have stated that I’m looking for a way to lose weight for people to share with me any plans they have heard of. The key here is if I have said I want to diet, then these things are encouraging. Knowing that you’re loved for who you are and not what your body looks like (true for any body issues – not just weight) is important. When people make suggestions and I have not stated that I am trying to lose weight, then it is not encouraging. It just feels like they are telling me I’m overweight which I already know and do not appreciate. Most people who are significantly overweight have more going on than just “letting themselves go” or “not taking care of themselves.” There are lots of factors. It’s very frustrating to be around someone who obviously has an attitude that conveys some kind of self-righteousness or superiority because they workout regularly or “take care of themselves” and look down on you because you “don’t.” Some people do have to work hard to stay healthy and in shape. Some thin people have worse habits than overweight ones – their bodies just handle it differently. There are a lot of people out there like that, but thankfully many more that see the person rather than the body they live in. Trust me – there’s more to it than just will power for those with serious weight issues. I’m not saying will power isn’t part of it. Lack of discipline or self-control in this area can be part of it. I’m saying there’s a lot more to it. In addition to my weight, a doctor told me that prednisone actually does thicken your blood some and between that and the extra weight most people put on from it, and the water retention and being more out of breath typically cause people to be less active…..these are the things that have led to my current situation.

I can’t change the past. I am in this situation and have to move forward from here. Because the Atkins’ diet involves purposely causing your body to change how it metabolizes food, I feel like that is not the best idea for me at this time. I actually feel better when I eat low carb versus any other plan I’ve tried. I also have to be fairly consistent in whatever my normal diet will be for my Coumadin to be effective. I’m considering what I want to do now. (Yes, you can officially consider this me mentioning that I’m looking for diet ideas, so if you have any info or plans you’ve heard of that might fit what I’m describing it would encourage me and be appreciated if you would share). I’m thinking about still trying to eat more low carb – just not low enough to cause ketosis which is the process I described above that changes how you metabolize food. I think I might try to be very aware of nutritional value of foods I eat and try to include a variety of fruits and veggies (more veggies than fruits), leaner proteins, and healthy fats. I really don’t want to go extremely low fat and I don’t want to start eating a lot of artificial things they put in low fat foods to try to give them some flavor. I prefer to eat real foods and just keep the right balance and moderation. It all sounds good, but I will need to work on finding the right balance and finding a way to get good nutrition, keep my blood sugar stable and my body feeling satisfied (I know that can be accomplished with enough protein and fat). When I have the right balance of fat and protein, I no longer feel as hungry and it is much easier to control portions.

The doctors have told me that I can’t do much exercise right now. I can move around as much as I am able to without getting too out of breath. That is not much at this point. That should improve over the next couple of weeks. After that, walking or water-related exercise is really all I’ll be able to do. Again, how out of breath I feel will be my guide. They said I may only be able to go 5 minutes at first, but if I do that consistently each day, eventually it will become 10 minutes, then 20, etc. So that’s it.

I hate talking about my weight and weight loss efforts most of the time. It makes me feel extremely vulnerable and it is difficult to be a support person to me in this area, because sometimes people say things that hurt me or cause a stumbling block for me even though they are absolutely trying to be supportive and loving. Some of my problem is baggage from long ago. Some of it is a connection my brain has made between food and love that is definitely not right but definitely there. Some of it is lack of self-control. Some of it is I love food. Some of it is that I have a “go for it” attitude about much of life and it includes food as well. Some of it is defiance – “no one can tell me what to do”. Some of it is being “addicted” to a pleasure. Some of it is an “all or nothing” type of thinking. If I “mess up” one time during the day on a diet, then I’m inclined to feel like I’ve “blown it” that day and might as well eat whatever I want and start again the next day. I’m that way about other things, too – even something like a “to do” list – if I make a mistake or two on it and have to cross something out, I’ll often redo the entire list so it’s perfect. I remind myself about the scriptures that talk about “food is for the body, the body is not for food.” I know there are scriptures that talk about being addicted to a pleasure and that is sin. Trust me, I’ve thought about it a lot. I’ve repented of a lot. I still struggle in this area. I don’t know why I find it so difficult. I’m weak in this. I keep fighting. I identify with Paul when he talks about doing the thing he does not wish to do. Having a brush with death primarily because of my weight definitely seems like it would be something that would make me work even harder at it and I will. Maybe this happened because God knows this is what it will take for me to finally get this part of my life under control. I’ve prayed about that recently, too. I need prayers for strength and wisdom in this area. Trust me – for me, to speak about this in this way is pulling out all the stops. I feel extremely vulnerable. It’s humbling and sobering. Just what I need.

The last few days have been somewhat stressful, obviously. Last night on the way home from the hospital I was checking my email and found a note from the hearing clinic. The info they are getting from my insurance is quite different from what they told me. Basically, if they are right then our coverage is pretty minimal and our cost for me to have two cochlear implants would be close to $100,000! I’m hoping that they are wrong! I will be contacting the insurance company next week and trying to find out what’s going on. Hopefully, it’s just a mix up and everything will proceed as planned. I’m not up for a “fight” with insurance today, so I’m going to work on recovering physically from the events of this week and be ready to work on this next week. Pray that it’s a mistake and it will be easily sorted out!!!!

In addition to all of this, after I got home last night I sat down and read everything they gave me about my follow-up, my new medications and all the info about that. I was trying to be so careful and do it all exactly as I was supposed to. The info emphasizes over and over that it’s very important to take the exact dose prescribed and that Coumadin should be taken at the same time every day in the evening around 6pm. I sat with my prescription nearby and watched the clock carefully. At 6pm I took the dose I was supposed to. I even double checked everything. Yep. I did it exactly right. Then when I went to record the info in a booklet they gave me, I saw that the square was already filled. That’s when I realized that they had already given me my Coumadin (WAY early!) in the hospital! I took a second dose on the same day. Being new to this and knowing how much they emphasized how dangerous not following the exact directions can be, I was stressed out, to say the least. I finally got ahold of someone who contacted the anticoagulation team (yep – I now have an anticoagulation team!) and in the end it was fine. Scared me, though. Kind of the icing on a not so great cake. Survived that, and hopefully there won’t be any more mix ups.

I’ve shared a lot here today. I know. As I said, I think I needed to decompress. I know that God is always in control. I’m reminded once again how much we have to rely on Him. We have no power on our own. We need His strength and guidance and protection. We need strength and prayers and encouragement from each other. Thanks for caring about me and taking the time to check my blog and find out what’s really going on in my body, my heart and my mind. I know that I am an extremely blessed woman.

This weekend has been crazy!   It is marvelous the resources available for the deaf and hard of hearing, and the technology is such a big deal!  I had a big weekend regarding hearing things.

 Friday night I met with Debbie again.  She video tapes our meetings so that I can look back over the dvd and see how to sign the things that we talked about.  Very helpful.  You can look at pictures and get some of it, but seeing it makes a difference.  I also have trouble remembering a lot of what we go over, so this is a big help!  We cover a lot of ground.  It took a while after we were finished to load the materials onto her computer and than make copies of the dvd, so we were there very late, but  it was worth it.  I tried to explain to her in ASL as much as I could what happened at my CI evaluation.  She helped me with a lot of vocabulary, but I made a good effort!  I just need to practice – a lot!  

Saturday morning my friend, Robin, and I attended my first HLAA meeting.  I really didn’t know exactly what to expect.  There were more people there than I thought there would be.  Some were friendly, some didn’t really attempt to say hello.I guess that’s true in almost any group situation.  I am in a particularly difficult spot right now because I don’t have hearing aids that help me at this point (although I think I may be able to have the one adjusted to my new hearing level and it might help some) and I haven’t had the CIs done yet, so I really couldn’t converse with anyone very well, anyhow.  The entire meeting was captioned on a big screen – they used something called CART which I heard about last year in the meeting in St. Paul.  There was a person there with equipment that reminded me of a court stenographer, and she captioned what was being said.  There were business items to attend to in the meeting, then they had a guest speaker.  The topic wasn’t announced beforehand, but it turns out that the topic was “Cochlear Implants” and the speaker actually has bilateral implants by the same company I am leaning toward!  I thought that was pretty amazing!  I enjoyed hearing what she had to say.   So far, every blog or comment that I’ve seen about bilateral implants is very positive.  They all say they hear better with two than one.  Makes it pretty easy for me to feel comfortable with my decision.  After the speaker, there was more business to attend to, then at the end they had 4 men from Starkey (a hearing aid company) there who actually are part of the teams that design their products.  They wanted to see/hear firsthand what issues and concerns users of hearing aids have to help them do a better job of designing and solving problems.  There was a question and answer session after the speaker and the Starkey guys. There seemed to be more questions than time for answering, but it was all interesting to me.  There is only one more meeting before they break for the summer and it falls on a day when I will be out of town, so I will likely become a member this fall.  

Saturday afternoon was a bridal tea for more lovely daughter-in-law to be!   It was wonderful taking some time to honor her and shower her with love and gifts!  Jessi (my soon-to-be daughter-in-law) and Nicole (my daughter-in-law) were really wonderful helpers for me at the tea.  They were both seated next to me, and immediately (without being asked) they each took turns making sure I understood what was being said as much as possible.  They used sign language and wrote me notes when necessary and let me know when the room got quiet and only one person was speaking to the group (when you can’t hear that, it’s easy to embarrass yourself – you just keep talking without having a clue!) and just helped in general the whole time.  It touched my heart how they both were thinking of me the whole time and stepped right in to make it go as well as possible for me!  I’m a blessed mom!  

Today was also a big day at church.  Luke, a friend and the technology guy at our church, has been working on getting some software up and running for me that will caption what is being said at the podium.  Today was the trial run, and there were a few bugs to work out, but in general in went great!  The software made quite a few mistakes (I’m pretty sure we didn’t discuss biotechnology, the SEC, or pray not to be bullies) but really, it was impressive what it could do.  Luke says that it will “learn” the voice of the primary user and become more accurate over time.  It really is very helpful.  Even when I am able to get the right pieces of equipment going to amplify the sound and can follow what is being said – it takes a lot of concentration and “work” for me to do it.  My first thought when I could read the captions was “blessed relief”!  It was a relief to not have to work so hard at it.  I only used the captions for Bible class, but added my personal  assistive listening device for the assembly.  Having sound and captions was nice.  They filled in the gaps for each other and today was still pretty tiring but I think part of that is just trying to manage it all and learn a whole new set of things.  Part of it was reading a long ongoing document.  I believe some font size and spacing adjustments will help with that a bit.  I think it would also help me if I bring a tv tray to church and use it to set my computer on.  It gets heavy after a while, and if my hands were free it would help me manage all of the other things – reading glasses, my listening device (needs frequents adjustments as different speakers are up and singing, etc) and I could also possibly use a Bible, etc…..I will try that next time.  

Overall, it was a very busy but very productive weekend in my hearing world.  It is an ongoing learning experience.  I  stopped in a store and a woman was so helpful – she wrote me notes and even offered to go around the store with me and help if I needed it.  I didn’t, but I appreciated her attitude so much.    It really is very touching to me how hard most people work to communicate with me.  I feel very blessed.

I’ve spent some time online today checking out info on Med El and their CI options. I have to say, it all sounds great, too. It’s really hard to get down to the nitty-gritty of what is really important and what is just good marketing. They all make quite a few claims and I think they all do a good job. It’s just that this is a big decision – you want to choose the device that really will give you the BEST performance possible and be reliable. I’m going to have to make a lot of notes to make it easier to compare, ask more questions if necessary, and pray for wisdom. I think any choice will be much better than what I have now.

Tonight I will meet with Debbie again. I’m really looking forward to it. I haven’t really been able to practice a whole lot this week. I spend quite a bit of time alone, so it’s not ideal for practicing ASL. I will spend some time today reviewing vocabulary and quizzing myself online for “reading” fingerspelling to improve my speed. I am planning to attend my first HLAA (Hearing Loss Association of America, Twin Cities Chapter) meeting tomorrow. A friend is going with me (thanks, Robin!) so we’ll both be out of our comfort zone, but at least together! I expect it to be a great thing, actually, and good to make more contacts in the hearing loss world. I really don’t know what to else to expect. Should be interesting.

I would appreciate prayers for wisdom as I try to make the best decision possible about the device and company to go with. Thanks!

For some reason my last post cut off at the very end (maybe I exceeded the word limit?). The last sentence on there should say, “I’ve been praying that if this is the right path for me to take that I would qualify and if it’s not, that I would not. Since I did qualify, I feel confident that this is a good direction for me to go.” My prayer now is for wisdom as I decide which specific device to have, and that God will stop this process if there is any reason why it would not be a good idea for me to proceed.

I still feel good about the things we decided yesterday. I do find myself thinking about the residual hearing I have left. I am hearing a bit more than I did at the worst in this episode. When on the phone, I can tell when someone is speaking. I can’t understand it at all, but I know they are speaking. I can hear the phone ring some of the time. I can hear a little bit of my husband, Chet’s voice (he has a deep, fairly loud voice and speaks to me very loudly, apparently!). I don’t understand most of what he says, but with lip-reading I can understand a little. At church, with earbuds and a listening device and intense concentration, I can follow most of what the preacher is saying. Last night at Bible class I tried to use the listening device. I guess it takes more concentration and effort than I realized (and I knew it took a lot) because after an entire day of hearing tests and word and sentence lists, and working at understanding long detailed discussions with professionals at the clinic, I just couldn’t do it. I tried and I really did want to understand. Even when I was trying to concentrate, I was only getting about half of it. I really found it difficult to concentrate. I also notice a slight vibration in my skull sometimes using that device (I think from the high volume) and it was mild last night, but irritating enough that I couldn’t take it very well. I don’t know if it was my brain that was too fatigued to do it, or if my ears were overstimulated already, or if I just was too tired and didn’t have the energy, or maybe a combination of all of the above. Whatever it was, I only lasted about 10 or 15 minutes and I had to take it off. I hated that, but it was the choice I needed to make at the time. Of course, I couldn’t hear or understand any speaking after that.

Here are the cochlear implant manufacturers and the devices and the things that I consider notable for me to consider at this point:
Cochlear: This company has been around the longest and has a good success rate. They have worldwide service, so if we were traveling internationally, we would likely be able to find someone who could service my equipment if I had any problems. We do travel, and we are planning (Lord willing) to do some mission work in a few years after Chet retires, so this got our attention. Their device is the most attractive to look at (in my opinion) and they have some fun covers that are easy to snap on and off so you can dress them up or down according to your mood. Obviously the appearance is secondary to function and reliability, but it’s a nice perk. If you are going to be wearing this behind your ears and on your head for the rest of your life, it would be nice to be able to have some fun with it. Some days I might want to wear zebra stripes or metallic purple or pink camo, but maybe not on a formal night on a cruise, or to my kids’ weddings, etc… you get the drift. This is the company, however, that currently has a recall on their newest technology and I’ve heard that they keep saying they are getting it taken care of, but it’s been 2 YEARS and they still don’t have it resolved. If we went with this company right now, I would be implanted with the previous generation’s technology. That doesn’t seem best to me. Since I hope to have this equipment for the rest of my life (or at least many years) it seems best to get the latest and most advanced technology available right now. An audiologist also said that they tend to be slower than the other two companies when you need parts or repairs done. I have pretty much decided against going with this company because the things I mentioned above are pretty significant negatives in my opinion.

Advanced Bionics (AB): This company is the one that I had originally dismissed because I read about their recalls and a manufacturing citation. Both the doctor and the audiologist told me that all of the companies have had these and that I shouldn’t discount them because of that. I’ve heard about several patients has who are “stars” with their CIs, and they all have devices from AB or the company I will discuss next, Med El. I was told all 3 companies are good, but when I asked some professionals about the various companies, one said they all perform similarly and one said they felt the two I just mentioned were a little more high-tech and advanced, but any would be good choices. The big thing that AB “brags” about is that they have a device called Neptune that is waterproof. At first, I didn’t really think this was such a big deal, but the audiologist told me that it actually is. Most devices are considered water-resistant, but that’s really about normal sweat, humidity, etc. One claims to be fairly waterproof from another company, but they don’t recommend you swim with it. It’s more the sort of thing where if you dropped it in the sink, you could get it out quickly and it would still be ok. The Neptune is actually made for swimming. That’s not the biggest factor, but we do spent a lot of time around the water when we travel and it would be nice to be able to be on a boat or at the beach and not have to worry about getting splashed, but still be able to hear. I am planning to join a water aerobics class soon to start moving again and begin working out and it would be great to be able to hear the music, instructions, and be able to socialize with others in class. Again, not the most important factor, but nice for my lifestyle. They also have a product called Harmony. It is the largest of the processors available now, and in my opinion the least attractive. You get to pick 3 different colors to jazz up the back of the part that goes behind your ear) and there are “skins” you can buy to wrap around it like a sticker, so there are some options. Not as easy as the ones Cochlear makes, but options nonetheless. One nice feature is that there is a small microphone that goes over the natural opening of your ear. It allows you to place a phone or headphones over your ear normally and it will pick up the sound there and send it through your processor. All others require placing the phone above your ear near the microphone on the processor. That is like the Behind the Ear hearing aids I have been wearing, and in 3 years, I still haven’t quite gotten used to it. It’s difficult for me to find the “sweet spot” where I can hear it well, and when I do it is uncomfortable to hold the phone in that position for long periods of time, so that microphone that allows holding the phone in a normal position would be nice. I also wondered how else it would be an advantage. Why would it matter if it’s over the “natural” opening if you aren’t processing sound through there anymore? Basically, it also takes advantage of the natural acoustics of your outer ear – the “bowl” helps block outside noises so the microphone can pick up more of what you are trying to hear. I found out that typically when you get CIs you get one processor per ear implanted, but my clinic gives you two per ear at so that you have a backup. That means that if I go with this company, I could get the Harmony as my main one and the Neptune as my backup and have the use of both devices. That would give me the most flexibility in my life. It would be unusual for both processors to fail at the same time, so if I had equipment problems I would likely be able to use one while the other was being fixed, but could use the Neptune as a backup if necessary. It also means that getting service while traveling becomes a non-issue. I will have 4 processors so even if I have a problem I will have enough backups to get me through until I’m home again and can take care of things. This company is also about to release a new product. It looks like it will be sometime in the late summer or fall. If I go with this company, I would probably start with the Neptune as my primary system, and get a certificate saying that I am going to wait a couple of months until the new product is available, and get that one as my “backup”. I would then use it as my main processor and the Neptune for the appropriate water situtations. Right now this is the option I’m leaning toward. I could get the latest technology out there (the new processors will be smaller and more attractive than the Harmony and with an accessory have bluetooth capability for many devices!) and I could also have the waterproof Neptune – this would give me the best technology, the most flexibility from a company that has a good track record for successful users and reliability. Seems like a pretty good choice.

The last company to consider is Med El. Their latest product is called the Maestro. They are a European company so the design is sleek and beautiful. There are no controls on the processor. Everything is done with a remote or automatically. Cochlear also has a very nice remote, but no automatic functions. AB has automatic functions, but no remote. You would make any manual adjustments on the processor. To be honest, I haven’t paid a lot of attention to this company, but am convinced I need to do more research. The staff at my clinic feel like this is also a great choice, so I need to look into it further.

That’s pretty much where I am at this point. I will need to make my final decision when they call to schedule surgery, so I want to get on this and get that done. It feels like a very big decision. I know they say any will be good choices, and it’s mostly about fitting my lifestyle as well as I can. Another significant factor is battery use. Batteries are expensive and most of these devices use either 2 or 3 disposable ones every 2 days! That’s a lot of batteries! Most also offer rechargeable batteries – expensive at first, but I feel certain they make up for it over time. I need to check details for each device on this.

Hope you all found this interesting. It definitely is for me!

I want to start my post today by saying that I am shocked and dismayed that I haven’t posted anything here since Saturday! I honestly thought that yesterday was the only day I missed! I don’t even know how that happened! I apologize! I thought I was really staying on top of things here!

This is a long post but has the details of what happened today at the clinic. I decided to go into detail because I think there are some who are interested in what happens when someone is considering cochlear implants and there could be someone out there who is considering them for themselves or a loved one and the info could give them things to check out.

Today was a big day for me. I had 3 appointments at the clinic. The first was a hearing test at 10:00 this morning. The results of that showed that there has not been a change in my hearing levels since this latest episode occurred. There was, however, improvement in my word recognition in my left ear (the one that just lost hearing and is now my “bad” ear). The audiologist said that it’s possible that my brain has just become better at “filling in the blanks” for me. I’ll take it, whatever it is!

The second appointment was at 11:00 with my doctor. He discussed the results of my hearing test with the audiologist who specializes in cochlear implants (and who I was scheduled to meet with later in the day) and she told him that the hearing test results do qualify me for the implants. I was given a large packet of materials to read over about a month ago, so I had done my homework and came to the clinic with a list of questions for the doctor as well as a list for the CI (cochlear implant) specialist. Dr. Levine and Chet and I discussed a number of things. I am planning to have bilateral (both ears) implants. That is a choice. Some people choose to have only one. For some it’s about insurance coverage (thankfully mine covers bilateral implants). For some it’s a choice to have one done and then wait and see how they do before they decide about the second one. When you have CIs you usually lose any remaining residual natural hearing that you have permanently. It’s a choice to “go digital” for the rest of your life. For patients who have severe to profound hearing loss in both ears, two is usually better than one . Just like your natural hearing, input from both ears can give you a sense of direction about where sounds are coming from and improved hearing overall. There are no guarantees, of course. Because of my autoimmune inner ear disease, any residual hearing that I have now will likely be gone at some point (sooner rather than later) so I don’t really feel I have anything to lose by trying this. The next question is whether to implant both ears in one longer surgery or in two shorter ones spaced a few weeks apart. The doctor feels there might be a higher risk of blood clots from lying on the table for a longer period of time. He also told me that the riskiest part of anesthesia is going under and waking back up. Once you are under, it’s not usually all that risky. I asked him specifics about the risk factors because of my weight (I’m heavier than I’ve ever been right now after a year on steroids and for those that don’t know me personally, I’m significantly overweight) and also after a year of steroids I’m physically weaker than I’ve ever been and feel like my system has really been through a lot this past year. In addition to that, steroids cause you to be immune suppressed, so I had questions about risks in that light, too. Basically, he felt that the my weight and all the things I mentioned above were not factors that would cause him to feel that I am at a significantly higher risk for this procedure. He also concluded that it was really my choice if I wanted to have one longer surgery or two shorter ones. I decided that I would rather have one longer surgery and do both implants simultaneously. It might be a harder recovery, but to me that part is so short it is worth it. I feel that it would be harder on my body to go under anesthesia twice than it would be to stay under for a couple of extra hours. When they do this surgery, they say most people have a sore neck afterwards because your head is turned to one side for roughly 3 hours. In the case of simultaneous bilateral implants, I wondered if turning your head and having you lie on the side they just operated on for another 2 hours would cause any complications, but he said it would not. I also think that I would prefer to adjust to the two CI’s together from the very beginning rather than adjust to one and then add a second. Seems like that would change the sound and be harder in the end. It would also be less expensive for us and the insurance company to have one surgery rather than two. The risk factors are obviously more important than the cost, but it is a factor. I also had some questions about specific CI’s. There are 3 manufacturers, and I’ve been studying their brochures and looking up info about them. I’m so glad I asked his opinion. When I walked into the office I was leaning toward one company and had dismissed one in my mind because I had read about some recalls and manufacturing citations they had received. I found out that all of them have had some recalls. I also found out that his patients who have been the “stars” ie most successful, have all gone with one of the two companies that I was not leaning toward! His opinion really changed my decision process on this. More about that later. Overall, it was a very productive visit and all of my questions and my husband’s were answered. We made some decisions, too, which felt good. Simultaneous bilateral cochlear implants. Decision made.

We had time for a quick lunch (apparently there are like 100 Chinese food restaurants around the UMN campus!) so we had – yep you guessed it – a quick lunch at a Chinese place and then headed right back to the clinic for the 3rd and final appointment.

This appointment was for a cochlear implant evaluation with a CI specialist, Diane. Even though my hearing test results qualified me, there was still more testing to be done. I needed to be tested with hearing aids in and adjusted as much as possible for my hearing loss. This test was actually harder than any I have had. They tested the right ear, then both together, then the left with a long list of words that I had to repeat and then sentences. Trust me, it was a lot of words and sentences! I had to concentrate very hard and it was difficult for me to understand most of them. I also did the standard “press the button when you hear the beep” test for each ear but this time is was more “whoosh” static-type noises. Because the hearing aids I typically use are bi-cross (they bypass the formerly bad ear and send all sound to the formerly good ear) they had to use “loaners” that they keep in audiology and programmed those to my hearing loss. I found the results interesting. Even though my left ear is now the one with the greatest hearing loss, it is also the one with the best word comprehension. I scored 55% on this test with hearing aids, for word comprehension. That result means that the left ear does meet the criteria for qualifying, but just barely. The cutoff is 60% word comprehension. My right ear that now has the most hearing has stayed steady around 30% word comprehension for several years. The reason this is possible is that even though more sound is getting in on that side, it is more distorted, so it isn’t helping me as much. I can hear that someone is speaking (with the hearing aid) but can’t distinguish what they are saying. It’s kind of like the “waa waa waaa” thing. Diane talked to me about the fact that some people choose to have one implant and keep their residual hearing and use a hearing aid on the other side. They like to see how it goes with one before they take it all the way with the second one. She told me that the average CI user end up with around 60% word recognition which would be a noticeable improvement on my right side, but not much better on the left. In my case (which is very unique – AIED is rare) it still makes more sense to me to have both done now. I feel that if I end up being “average” (of course, I’m hoping to be one of the “superstars” that ends up in the 90% range!) it would still be a slight improvement on the left side. The odds are so high that I will continue to lose hearing, that I don’t feel like I’m really giving anything up. If anything, I’m allowing myself to get off the roller coaster ride I’ve been on for nearly 13 years and move on with my life. If this past year is any indication, the steroids have been the only thing that has kept me from losing more hearing any sooner. One month after I finished that course of treatment this episode occurred. I feel that implanting both right now would actually be helping me keep this level (worst) or improving it sooner (best!). All indications say that I would likely be a person who would do very well with CI’s but they cannot predict that for certain and it’s possible I could end up lower than average. In that case, I think my feelings are that I really gave it the best shot I had, and if I turn out to be one who doesn’t adjust well I’ll know I did all I could.

After we finished discussing bilateral vs single implants and she felt comfortable that we had considered everything we needed to, we moved on to the next part of our meeting. She had a list of items to go over with me that had to do with the specifics of the surgery and my expectations about the outcome. She included details about some of the risks of surgery. To be honest, I feel most nervous about the surgery itself and any possible complications. Like anything, they give you all of the horrible possible complications. I understand that they are rare, but since I have fallen in the “1% of the 2% of all patients who have sudden hearing loss….” I know that although it’s unlikely it IS possible. All of these are rare, but possible: your facial nerve is very close to where they will be working during surgery. It is possible that you could have facial nerve damage that would cause drooping similar to a stroke patient or someone who has Bell’s Palsy. If you have that complication, it is usually permanent. They have a way to monitor the facial nerve during surgery, so it is really rare for this to occur. The nerve for your taste buds is also very close to that area. There is no way to monitor that nerve, so having some changes in how things taste occurs more frequently than the facial nerve damage, but is still not very common. When it happens, most people say things have a slightly metallic taste. This nerve can repair itself, so of the ones who have this complication, most recover normal taste within a few weeks. Some people develop a twitch in their eye area once the implants are activated. Most of the time if that occurs, they can make adjustments to your program that will solve the problem (less stimulation in a particular area). Meningitis is a possible complication. It’s very rare to get it, but CI patients are more likely than some, so they require a vaccinations before they will do the surgery, and a second one 3 months later. If you happen to get this one, it can be fatal. The other thing that can be a complication is problems with dizziness and/or balance. If you have these, they can usually do things to help you manage it and keep it from interfering with your daily life too much. All of these things sound scary and I will be asking for prayers that I don’t have ANY complications when the time comes. They have to warn you about all of the possibilities.

The last part of the meeting (it was a 3 hour appointment!) was about the 3 companies and the specific devices they have to offer. I asked all of my questions and she gave me some insight and things to consider. She had the external devices (processors) there so we could see them and touch them and get a good idea of what they would be like. I’ll go into more detail about the specific devices and what I’m thinking about that in another post. For now I’ll say that it was very helpful to actually see and feel these items and have someone who works with patients who have used all of them give me input about their experiences and things I should still consider. I”m leaning toward one device right now (shockingly, it’s actually made by the company I had originally “discarded” because of the recalls) but still want to find out a few more things. By the time we finished, I felt like we had a very productive session and that all of my questions (and Chet’s) have been answered. I feel good about the decisions that we made, and feel like I have a realistic idea of what to expect with CIs and what the process will be like. I find it all interesting. I’ll share more about that in my next post as well.

For now, I want to thank all of you for taking the time to read this. I want to thank you for taking the time to check in on me and find out how I’m doing and what’s going on in my world and this process right now. I especially want to thank you for the prayers and encouragement. I’ve been praying that if this is the right path for me to take, that I would qu

Last night was my meeting with Debbie Lawrence, the instructor of our Easy Signing class that several of us took last year. She and I have stayed in touch. We are teacher and student but have also become friends. When I updated her about the latest changes in my hearing and asked for suggestions about spending time with more people who are proficient at signing, she offered to meet with me and work with me one on one. I certainly wasn’t expecting that, but I can’t tell you how much I appreciated it.

We met in a hotel lobby last night that was centrally located (about a 40 min. drive for each of us!) and we ended up spending over 3 1/2 hours together! We chatted and caught up, we talked about various challenges I have come across and possible solutions, we went over some new vocabulary, we signed to each other during much of the time and we discussed getting together again next week and what I could be working on before then! All in all, it was lots of fun, very encouraging, great practice, and very practical!

Debbie mentioned to me that she noticed that my voice is changing. Chet also mentioned that to me. I appreciate honest (but kind) input about those types of things because if I know they are happening, then I can try to find ways to work on it. I always ask people to let me know if the volume of my voice is too loud or too soft, so I can learn what “normal” volume feels like. Debbie gave me some tips about how to enunciate my words and where in my chest/throat to try to project from so that my voice will continue to sound as normal as possible. I thought that was really good feedback and information for me.

She also talked to me about some possible solutions to being startled when people come home each day. Since I don’t hear any of the usual sounds of the door opening or someone walking around upstairs or even calling out a greeting, it often startles me to be home alone and then suddenly there is someone standing right next to me or touching my shoulder to let me know they are there! They have tried ringing the doorbell a time or two, which does flash lights and alert me that the doorbell rang, but I don’t really want that to be the signal, because then I feel like I need to see if someone is at the door and I need to answer it. I could also see starting to ignore that if it’s just letting me know someone is home, and then not answering the door sometime when there is a visitor there. Anyhow, Debbie suggested having them flash the light in the entryway when they walk in. Because my back is usually to that area in the evenings, it might get my attention and it might not. We’ll have to see. She also suggested having them stomp in the entry. I might be able to feel the vibrations. Another suggestion was that even if I still was unaware, walking up to me from behind, but to the side and without touching me, is less startling. I am likely to see the movement from my peripheral vision and maybe have a little heads up.

Another situation we discussed is closed doors. I was at someone’s house this week who has a crawling infant and the bathroom door was shut. I didn’t know if it was shut to keep the baby from going in there or if someone was in there. Even if I knock, I can’t hear any response, so it doesn’t help. In that situation I’m probably just going to have to look around and see if anyone if missing. If so, I may have to ask about it. A possible solution could be for people to know that if they are in there they should lock the door and then if I try and it’s locked I’ll know it’s occupied. Another closed-door scenario has been Cody’s room. There are days he is in his room studying and has the door shut. I’ve needed to ask him a question, but again, if I knock, I can’t hear the reply. I’ve been kind of very slowly letting myself in so that he had time to shut the door before I saw anything if he was changing clothes or something, but that’s obviously not a great solution. Debbie had a good suggestion for that, too. She said that we can come up with whatever code we want to, but one she knows of would be that everyone in our household knows that if I knock on a door I am going to need to open it a foot or so but that I won’t look in. Cody (or whoever) could have some socks or something that they could throw or roll over by the door. When I see that, then I know they are giving me permission to enter. Pretty slick! I don’t think I would have thought of that!

I shared with her a lot of the things that I now am starting to see and understand differently than I did before. One is how much difference being animated when you use sign language really does make. Already, I can see how much that brightens up conversations and makes things more interesting. It does get boring/monotonous when you hear nothing and I can easily see how the number stories and letter stories we learned many deaf people enjoy would be fun and are something that a deaf person can fully participate in! Anything that adds a little fun and “color” really brightens up the day.

One thing I realized last night after our meeting was that I’ve been pretty focused on coming up with ways to make the things I’m used to doing work for me now. That’s good and needed. I also realized that maybe it’s time to be thinking about completely different and new activities that we can do together with family and friends that are of a nature that I can fully participate in, too, without all the extra effort. Chet and I were talking about that today. There are games like Guesstures and Pictionary that would be easy or good old-fashioned charades. I’m sure we’ll think of other ideas, but that is a slight shift in my thought process. I think it’s a good direction to be headed in.

Overall, my meeting with Debbie did me a world of good. I’m so thankful to have her for a friend and to have her as an advocate during such a major transition in our lives. She is taking time out of her very very busy schedule (she works full-time, plus teaches multiple ASL classes in the evenings) to help me and be there for me and I appreciate it!

I’m a thankful lady today!

Today I feel like I’m back in college and cramming for a big exam!  I’ve been trying to review my ASL over the last few weeks and have done some, but tonight is my meeting with my former instructor, Debbie, and I want to review as much as I can.  I have spent most of the day cramming as much review into my brain as possible!   It’s actually going pretty well.  I’m not saying I have it all down pat, but I am remembering what we’ve learned and it’s staying with me fairly well.  I’m really looking forward to getting together with her tonight and having the chance to actually converse.  There are so many aspects of conversation that I need to learn and work on.  It will come.  I’m really enjoying learning a new language and I’ve never had a more practical reason to do so than now!  I suspect I will pick it up fairly rapidly.  I hope so, anyways.  Hopefully as I learn I can pass the info along to the rest of my family and close friends and it will soon become a simple and effective way we can communicate at least part of the time. 

Last night we had a ladies class at our house and it was my turn to do the lesson.  I taught my first class as a deaf person and it actually went pretty well.  I couldn’t hear any comments or input from others, but I was expecting that, so it was fine.  I can still speak pretty normally (I joke that it’s now ideal – I can talk all day but can’t hear what anyone else says!) and I always ask people in the audience to help me by giving me honest feedback about the volume of my voice, etc.  If I know I’m being too loud or soft, then I can learn how to adjust to the proper volume.  It really helps me to get that feedback.  I’m so glad I have people I can trust to help me out with that.  I wish I could have communicated better during the fellowship part of things.  I was able to participate to some extent and it was great.  Maybe I will find more solutions to those types of situations.  Overall, it went well and I was so encouraged by spending time with some of my christian sisters.  Several had small babies with them and I got to hold all but one!  That was really fun, too.  I’ve realized that my home is the perfect one for kids to bring their noisiest toys to now because it doesn’t bother me at all! 🙂

I got a notice that my new tablet is on its’ way!  Should arrive on Monday.  I’m really excited about that.  It means we can get the voice to text software up and running for church and if it all goes according to plan, it should also work in any situation where there is a wifi connection.  That means that even at flock groups or ladies events in a home, in theory, if the home has wifi I should be able to get captions on some of the speaking.  Not sure how well it will work in environments where several are speaking at once, but if people are speaking one at a time, like in a class situation, it seems like it should work.  Can’t wait to try it out!

I have to say that I am seeing every day how much knowing and using ASL is going to help me and my family in our daily lives.  I know that there is likely to come a point when I will have some ability to hear/understand more than I can right now.  That may be months away.  I really don’t know.  It’s possible that there won’t be any improvement, but it would be so helpful right now if I could communicate better with it.  I can also see that down the road, no matter what happens with my ability to hear and function I am always going to be a part of two worlds – the deaf/hard of hearing one and the hearing one.  Even if I end up with the cochlear implants and I turn out to be one of the people that does extremely well with them, I think ASL will still be an important part of my life.  There will always be times or moments when I would take off the external part of the cochlear implants and knowing ASL would help me personally; but because I now am also a part of the deaf world, I will want a way to communicate with others who are deaf or hard of hearing, regardless of the outcome for me.  My eyes have been opened to a whole part of our society that I never really noticed before and I don’t ever want to go back.  I want to do what I can to engage with others who face these challenges and make their (and my) world just a little easier and brighter. 

Yesterday I was able to accomplish some business that I needed to take care of. I spent quite a bit of time working on booking some flights for my daughter and I and I did the majority online. I got to the point on her reservation where you click the final thing and it’s done and I got an error message that said I had to call. I dread business calls a little bit just because of the captioning and there can be some confusion passing information back and forth. I took a deep breath and made my call. I explained to the person that I’m deaf and using a captioning telephone and that there would be a delay from the time they speak until I see what they said and can respond, so I’d appreciate your patience working with me on this…..blah, blah, blah. Most people are very willing to work with me and I always make sure to repeat back any important info so there’s no chance of a mistake in the captions or a misunderstanding. It took quite a bit of time, but we finally got the reservation sorted out and I was a little frazzled, but felt good about the success.

The next call I needed to make didn’t go so well. I was trying to call a restaurant to reserve a room for my son and his bride-to-be’s rehearsal dinner. I tried 3 times (during a non-busy time of day) and they hung up on me all 3 times! Frustrating to say the least! I don’t know if they didn’t listen to me and just thought it was a telemarketing call or if there was too long of a delay from when I was aware the phone had been answered until I spoke. Whatever happened, I would see captions saying that someone answered, then start my spiel about the captioning phone. After I finished speaking it would say, “tone…..(recording)…..if you’d like to make a call, please hang up…..” I guess it’s bound to happen sometimes. Luckily Chet was home and he ended up making the call and taking care of the reservation. At least I’m out there trying!

My former ASL instructor, Debbie, told me that she would like to/be willing to meet with me to work on some ASL together! I’m really excited about that. We plan to meet on Friday. Better get some reviewing done before then!

A friend sent me a text message a week or two ago with an interesting observation. I have always been a person that is fascinated by and loves studying foreign languages. I was a Spanish major in college and got a minor in French. I took some Italian as well. She told me that she thought it was interesting that the thing that has happened in my life is related to learning a new language (ASL). She suspects that might not be a coincidence. I wonder if she’s right. Could be. It really is amazing how God works sometimes.

I was excited yesterday because I got to sing in church and it went well! I hadn’t tried since the latest episode – there’s just been too much to adjust to and figure out, but yesterday I was up for it and I was thrilled that it went well. Chet helped me out – I started singing and he gave me a nod if my volume was okay and if I was close to being on tune! I needed a lot of reassurance because it is so out there (think about how people sound when they have headphones on and can’t hear themselves!) but it felt so good to participate in that part of our assembly again.

I also made a discovery. I’ve been using two of the church’s assistive listening devices and holding them tight on my ears to try to hear anything being said at the microphone. Yesterday I borrowed a set of earbuds from Cody to try and it worked! I didn’t have to hold my ears, and I was actually able to understand pretty much all of what was said! I don’t really get it – my hearing on that side has been stable for years – it didn’t improve. That’s the same ear that the audiologist deemed “unaidable” before. It’s giving me some ability to hear, so I’m grateful.

I ordered my computer for the captioning program – should be here in a couple of weeks. Lots happening! Meanwhile, I continue to research cochlear implants. I joined an online community of users so I could get some firsthand info from people who have them. It’s been interesting so far. I feel like my expectations will be reasonable if/when the time comes for me. I also emailed my ASL instructor and she offered to get together with me a few times to practice ASL and I am very excited about that. It is becoming a big part of my life and is really helpful when trying to communicate. It is great to practice with all of the others who took the classes but I also feel I would benefit greatly from being around people who are proficient at ASL and can correct me and I can learn more patterns, vocab, etc from.

I’m still feeling very upbeat and positive about things!