I saw my thrombologist yesterday and had an ultrasound on my legs and it was good news – the clots are all gone and he considers the April incident officially over!  Hooray!  I am thrilled about that.  I don’t have to wear the compression stockings every day now.  He told me to wear them whenever my ankles are swollen and when I travel.  I am happy about that.  He also gave the okay for me to have surgery on November 13.  Chet and I have decided that we want to go ahead with the single CI on my right ear on the scheduled date.  The doctor I saw yesterday gave me a plan for managing my anticoagulant meds around the procedure.  I have officially notified my surgeon and the hearing and audiology clinics about my decision and about the blood clot doc giving the okay on it.  As far as I know, it’s a “go” and things are in motion get ready for the big day!

The only things left are getting pre-certification from my insurance – they don’t require it for outpatient surgery, but do for a planned overnight hospital stay, and having my pre-op physical with my primary care doctor (also having the required meningitis shots) and meeting/appointment with the PAC team to talk about managing my sleep apnea and checking out my heart for the procedure.  I guess if there are any additional problems with these items it could delay things, but I am hoping (and praying) that it will all go through without a hitch and I will have my new “ear” implanted in just a couple of weeks!  I can hardly imagine what it will be like to have input from both ears again (even though it is pretty limited on the one I wear the hearing aid on now)!  It will be interesting to see how my personal journey with a cochlear implant will go.  I will keep you posted!  

Please thank God for his guidance in this situation and that my blood clots are gone!  Please also pray that the rest will fall into place for my procedure without any problems, that the surgery will be a complete success with no complications,  and that I will have a complete recovery and  excellent results with this new device.  

My mom will be coming to help out (who doesn’t like having their mom around when they are hurt or feeling bad?!).  She plans to arrive on Nov. 12 and stay for about a week. I am looking forward to her visit and having a little tlc from her along with the rest of my fam! 🙂  

Thanks for your love and support and especially your prayers!  I appreciate it!

Today was the big appointment day to meet my new surgeon and discuss her thoughts on my procedure.  She feels quite strongly that it is too risky for me (in light of my recent blood clots and my sleep apnea)  to have both cochlear implants done in one surgery.  She is unwilling to do it, and said that she discussed my case with other doctors at the clinic and they all felt it was too risky for me.  I am disappointed.  In some ways it seems like it would be so much easier to have one procedure, one recovery and make the transition and all of the adjustments one time.  Obviously my life and general health have to come first here and I do appreciate that she is being so thorough and honest with me and is keeping my health and safety first.  I know I have been praying for wisdom and guidance here, and for it to be obvious to me what the best course of action is to take.  This seems pretty obvious.  The door is closed for me to have both done simultaneously.  She told me I could get a second or third opinion, but I really don’t feel the need to do that.  I’m not looking for a doctor who will do what I want.  I want to have a doctor who is thorough and who would lean toward caution rather than taking unnecessary risks.  

My impression from an email from my previous surgeon was that once my blood clots were gone and that doctor gave the ok for surgery, we would proceed as planned.  The truth is he may have wanted to talk to me again in light of all that has changed with my health and there is a good chance he would have agreed that a simultaneous procedure was too risky for me now as well. 

I also found out that the appointment with the pre-anesthesia consult team (PAC team) is more involved than I imagined.  I thought it would basically just  be a session where we discussed my health in detail and talked about risks, etc.  Last night I noticed the paperwork said to allow a minimum of 2-4 hours for the appointment!  Obviously more than just a discussion.   Apparently sleep apnea is a much bigger deal than I realized when it comes to anesthesia and surgery.  Anesthesia causes your airway to relax even more and that lasts for a while after you wake up – I think she said a day or two.  If you already have obstructed breathing (in my case severe) it is a very serious concern that needs monitoring.  For that reason, my doctor said she would want me to spend the night in the hospital, rather than have this done as an out patient procedure.  The blood clot risk is also more than just the fact that you are lying still for an extended length of time.  Anesthesia actually causes blood clots and if you are already prone to them….another thing that needs close monitoring.  I asked her about what I was told before that most of the time the reason people die from pulmonary embolism is that they can’t get treatment in time – you typically die within 30 minutes from it.  She said that’s true.  My next question was if you are in the hospital and a clot goes to your lungs that would likely be fatal if untreated, can it usually be treated fast enough to save you.  The answer was yes.  Another reason to keep me in the hospital for monitoring. The appointment with the PAC team will involve in depth discussion of my health status as well as working with my CPAP machine and making sure their equipment is all calibrated properly to manage my condition.  They may do additional testing on my heart if they feel it is necessary. They will want more info about the plan for managing my blood thinning medications during and before and after surgery so they have they can make the best choices of anesthesia drugs to use for my procedure and know what they need to have on hand in the event of any problems that could arise during surgery.   I told my surgeon that I wish I hadn’t had the vena cava filter removed recently.  I thought that if it was still in place it would make a difference in her decision, but she said it would not.  There are too many other things she is also concerned about.  That made me feel a little better, although I still think it would have been good to have if I have the surgery sooner rather than later.

The next thing to consider is which ear to have implanted first.  She told me that she would leave it up to me.  I met with my CI audiologist after that appointment and we had a very productive conversation about that and some other factors in my decision.  She said that in my case, it was pretty clearcut that implanting my worst ear would be the best choice.  I haven’t had any usable sound in that ear in 6 or 7 years,  If it had been 20 years or something she said it would not be the best choice, but it probably will do pretty well in this situation.  Usually, you have a better result with the ear that has the most residual hearing, but it wouldn’t make sense in my case at this time to implant that one.  My word comprehension in my right ear was 9% when we tested in April with a hearing aid.  She said it is possible it will be in the 70% or 80% range by 6 months post activation.  No guarantees, of course, but it would likely be a great improvement from where it is now, even if it is less than that!  Also, it is a big deal to be getting input from both ears.  I haven’t had that in years, so it would be amazing, I imagine!  

Chet and I also have to decide if we want to go ahead and have the single CI done on Nov. 13 and keep all of the appointments as they are, or wait until the next calendar year.  There are some financial considerations with our insurance about that.  It’s tricky because of all of the changes taking place in the health insurance industry – it’s hard to know what the impact of all that is happening with the new legislation will ultimately be on our specific plan and benefits.  I think that we are leaning toward going ahead and doing the first one in November as planned.  We will probably give ourselves a day or two to think about it before we let the clinic know, but that’s what our thoughts are right now.

I found out today that I do not have a hole in my eardrum. I don’t know if the doctor that told me I do was mistaken or if it has closed up on its own, but today she did not see one. Apparently a hole in the eardrum requires surgery to repair and they cannot just do it at the same time as a cochlear implant as I was told. I’m thankful to avoid another surgery! I do, however, have an ear infection. I suspect I’ve had it for several months now. Maybe it never completely resolved back in August. I really don’t know.I have used some essential oils to treat it when I felt like it might be starting up again, but apparently I didn’t do it long enough or I just thought it was gone even though it wasn’t. She decided to use a suction device and vacuum my eardrum! Let me tell you, you haven’t lived until you’ve had your eardrum vacuumed! It wasn’t horribly painful, but there were times it was uncomfortable. We could see on a screen what she was seeing and suctioning out and let’s just say it is good to have that junk out of there! Yuck! I now have a prescription for eardrops that I have to use for the next 10 days. It will be great to have the infection resolved. I am bummed that I also will not be able to swim during that time. I really enjoy swimming for exercise and so far it is the only thing I truly do enjoy doing for exercise. Oh well, hopefully it will only be 10 days and then I will be back in the pool!

I’m feeling a lot of things today.  I’m disappointed, as I mentioned.  It’s also a bit of a bummer to feel like you finally have a plan (it was not easy to make that decision in the first place) and then to find out that you have to make a whole new plan that involves several more decisions as well – all with lifelong repercussions.  I also will have to deal with the insurance company again.  I’m pretty sure that while outpatient surgery does not require pre-approval, inpatient surgery does.  Maybe that ultimately is not a bad thing.  If they give pre-approval for the hospitalization and procedure, it seems likely that there won’t be any glitches with payment when the time comes.  That is a good thing.  

In spite of all of that, I am really thankful for God’s guidance here.  I meant it when I prayed that what is best for me is what would take place, and I appreciate an obvious answer!  Ultimately I want what is best for my overall health and then what is best for my hearing.  This could very well be the best plan of all for my hearing situation.  Depending on how it all goes, it is possible that we will hold off on the second implant until I lose more of my hearing in the non-implanted ear.  We’ll have to see.  The company that makes the cochlear implant I chose is a partner with Phonak, a hearing aid company.  Some of the features of the CI, like bluetooth, are also available in hearing aids, and if I have a Phonak hearing aid, my ComPilot would be able to stream sound to both the CI and the hearing aid simultaneously!  For now, this new plan means that I also will not be giving up the last of my residual hearing.  That might really be best at this time.  Maybe this plan really will give me the best of both worlds.

My specific prayer requests for now are to thank God for his guidance in this situation, for continued wisdom for Chet and I as we make the final decisions about the timing of this procedure, and that all will go smoothly with the insurance company.

Thanks for checking in and for your love and support! 

Now I am just playing the “waiting game.”  I am waiting to see the surgeon on Tuesday and talk to her about my procedure.  I didn’t really think about the fact that a new doctor might have different ideas about what is best for me and the risks involved.  Before I was hospitalized with blood clots, I had a pre-op meeting with my usual doctor.  We discussed at length the options and risks and agreed that a simultaneous bilateral procedure is what we would do.  After the blood clot episode, I sent him an email to update him, and he said that we would wait until the specialist managing the clots said it was safe to proceed.  It was basically just a matter of waiting for his okay.  When I called to schedule surgery, that is still what I thought would happen.  It took me a little by surprise that this new doctor wanted to discuss those things with me, although it makes perfect sense. It actually tells me she is a good doctor. She  is making sure she knows my history and the recent changes in my health thoroughly and also wants to meet me and discuss with me her assessment of my situation and any associated risks.  There is an emotional aspect of this as well, and I’m sure she also wants to see for herself if I have realistic expectations and am ready for this step mentally and emotionally.  I am actually thankful.  It does make me feel a little bit of something….not sure what the right word is.  It could be stress, trepidation, uncertainty?  I will be glad to meet and have an official plan.

 It is possible she will recommend having two surgeries instead of one and I am really hoping that is not what will happen. For me, having two procedures will make it seem like it’s all just dragging out much longer than it has to.  Having two procedures, two recoveries, and adjusting to my new sound input and teaching my brain all of that first with one, then with a second one just seems like a whole lot of extra work.  I’d much rather go for it all the way, and have one procedure, one recovery and adjust to the changes once – even if it is harder at first, ultimately it will be quicker and more efficient in my thinking.   I’ve been praying all along for God’s wisdom and guidance in this matter and it sure seems like doors are opening like crazy for this to take place.  I have also prayed during the times that I have been worried about whether I am making the right decision that either it would be obvious to me that I should not go this route, or that I would have peace that I am making the right decision.  I wonder if this is an answer to that prayer.  After I heard that there is a chance this doctor might not want me to do both at the same time, I immediately thought that I DEFINITELY want to have both CI’s implanted at the same time!! lol Maybe this is God’s way of convincing me in my own mind that this is really what I want and it will still all go ahead as planned.  I had a day or two where I thought that I would be upset if they tell me “no” but now I am in a place where I know that I still want God’s guidance here, and if they tell me “no” it will be an obvious closed door and I will be thankful for God’s guidance.  If it’s a “yes” then I will also be thankful for God’s guidance!  It’s really a win win situation for me however it goes.  If it’s not what I am hoping for, then I will be disappointed, but thankful.  I certainly don’t want to endanger my life or put myself at high risk for serious complications.

I now feel 100% certain that simultaneous bilateral CI surgery  is what I want, but ultimately I want God’s will done most of all and I am relying on his guidance to make the right choice.  I have no more inner turmoil about making the decision.  I’m at peace with that.   I am just looking forward to this appointment so I will know what the plan is going to be.  

I didn’t pray for patience this time, but I think that is what I am going to have to have.  It won’t be long until I will have my answers! 🙂

Thanks for keeping me in your prayers and for checking up on me!

I said I was getting things going and all I can say now is that the ball is definitely rolling!  In the last couple of days I’ve had 6 or 8 emails setting up appointments, answering questions, and requesting records and info.   I met with my audiologist today to look at the cochlear implant products I am most interested in and to see the various parts and accessories up close and in person as I make my choices for the official order form.  Honestly, I needed her help getting that done.  There are so many choices to make and some things come with it and some are optional accessories….I was very glad to have someone with experience there to explain it all to me and get the proper order made.  I ended up going with a metallic silver processor, with a black cord and black magnetic piece (that is the part that is on your head instead of behind your ear).  I seriously considered the red – there was a very classic red color that I liked a lot, but ultimately the shiny metallic (sort of sparkly?!) looked better and made more sense for daily use.  I can still change my mind up until surgery day on that choice, but I think I’m likely to keep it.  I chose to go with a company called Advanced Bionics (AB).  Looks like I will actually be a bionic woman!  (You knew that was coming, I’m sure!).  The  processor I chose  is a new product recently released  and there are quite a few features that I like.  It’s small and lightweight (we’re talking in the world of CIs here – so similar to the bigger behind the ear hearing aids only thinner) and has bluetooth capabilites!  You need an accessory for that, but it is something you wear around your neck and then you get bluetooth input directly into your CI. Because I am ordering two, and you can choose an accessory with each (both control both units simultaneously for bilateral users) I was able to choose the ComPilot which is the accessory for bluetooth with one, and a remote control with the other for changing programs and giving info like battery status, etc.   I also got a second color for the magnetic piece – it’s sort of a metallic brownish bronze color.  When you order a CI at my clinic, you get 2 processors instead of one, so you always have a backup.  That means that for me, a bilateral candidate, I will have two pairs of processors to use.  One reason I chose AB is that they are the only company right now to offer a completely waterproof processor, and they allow you to choose that as your second one if you want to.  We spend enough time around the water, that I loved that idea.  It can be worn in or out of the water.  Perfect for snorkeling with the family or for a water aerobics class at the gym.  It would even be great on a rainy day.  There were more color and accessory choices to make with that one and I had more freedom to have a little fun with it!  One portion comes in only black or white, and they require one color for the entire unit to match that.  I chose black for that.  Then I had the option to choose 2 more colors – I went with red and teal!  Also had to choose more colors for 2 waterproof magnets and 2 non-waterproof ones.  I think I chose one black and one white, but I can’t really remember!  Too many choices to keep up with it!  The cool thing about the waterproof one is that you don’t wear it behind your ear.  The magnetic piece is there and you have a cord to connect, but the processor is worn wherever you want it – I had to choose 3 accessories for that.  I went with a clip (it allows you to clip it to a bathing suit strap or a pocket or lapel if you are wearing it out of the water), a lanyard, and an armband.  In addition to all of that, there were choices to be made for both sets of processors with length of cords, a pouch to keep it in, etc….  Lots to figure out but kind of fun. I didn’t realize that the magnetic pieces only came in basic colors. I thought I could match both parts with whatever color I chose. It was kind of fun picking everything out and nice to have that done.

My new doctor did not want to wait until Nov. 1 to see me.  They got my records from the specialists I have seen for the blood clots and sleep apnea and I just got a note from a nurse saying that the doctor wants me to have a consult with their PAC team – pre-anesthesia consult.  They will be contacting me to schedule that soon.  Meanwhile, my pre-op meeting with my surgeon has changed from Nov. 1 to Oct. 22.

As far as how I am feeling, yesterday I reviewed more of the info about what to expect that was given to me by the clinic back in April.  I still have times where I wonder if this is really the best course of action, but most of the time I feel certain it is.  What I found interesting was an article they gave me that was written by an audiologist who lost his hearing and ended up with cochlear implants.  He talked about that very thing!  Apparently it is quite common (probably normal) to have some doubts and wonder if you are making the right decision.  He expressed some of the exact feelings I have had about this and said that he felt that way the entire time leading up to surgery and during the interim between the surgery and activating his devices.  He also said the minute they were activated he knew he had made the right decision!  It made me feel better.  It seems to be a normal part of this experience.  At my appointment today it was obvious once again that my hearing hasn’t really improved and that was actually reassuring as well.

So much has happened in the past week.  I’m sitting here writing, emotionally a little drained, but so very grateful for the guidance God gives us when we seek His wisdom.  Last Friday I called our health insurance company to try to get the correct info on our coverage for bilateral cochlear implants.  The news was good!  It was exactly the same as what I was told back in April when I called.  I don’t know why the clinic and hospital both got very different and conflicting results when they called to check my benefits back in April.   I emailed the person who schedules the surgery and works with insurance companies at my clinic and let her know what they told me.  She and the hospital once again made a number of calls and got differing info, but in the end she said they were checking our benefits more as a courtesy to me and that I should go with whatever they are telling us.  Her primary job with insurance was to see if any precertification was needed.  We were happy with this news because the amount we would have to pay for our portion was significantly less than what it looked like it would be based on the “bad” info they got back in April.  It was still a lot of money, but much more doable. 

Next came a long discussion with my husband and a lot of prayer about the right decision for me.  It wasn’t an easy one.  Ultimately, we went with what made the most sense logically.  The odds are greatest that I will continue to lose hearing and even if I opted to wait, I would likely be doing this in the near future anyway.  The odds are also greatest that I will not experience complications from surgery.  The odds are greatest that I will be a person who will have a great result from the CIs and they will greatly improve my ability to hear and understand.  Seems like a no brainer, right?  It wasn’t.  Usually after spending so much time deliberating over a difficult decision, there is a sense of relief when the decision has finally been made.  That was not the case for me this time.  Logically, it made the most sense, but I still had some conflicting emotions about it.  This is a major, life changing decision and while I trust God and his wisdom and guidance completely, I think I was having a hard time trusting that I was interpreting that guidance correctly!  I realize now that God knows how I’m going to interpret things and is certainly capable of making sure I get it right if my intention and desire is truly to follow His plan for me!  I specifically prayed that if having the surgery is the right decision for me, that I would have peace about it, and if it is not, that I would see whatever I need to see to realize it.  I think the thing that was holding me back was the idea of choosing to give up the little bit of natural hearing that I have left.  I have adjusted to this level of hearing loss and am functioning fairly well with technology (ok, with a lot of technology!).  What I finally realized is that my natural hearing is what I hear with no technology at all.  That is really very little.  The occasional random sound – unidentifiable but a clue that something is going on that I should investigate.  Chet has a deep voice and has learned to speak very loudly to me.  I can usually tell that he is talking and if I lip read also, can follow much of what he says without a hearing aid.  That’s about it.  With that in mind, and the fact that it’s possible (although it is only a small possibility) I won’t lose more hearing (considering the blood clots and sleep apnea) it’s still a LOT more likely that my disease will continue to run its course and I will lose the last of it sooner rather than later.  I realized that I’m not really giving up what’s left of my natural hearing, it is already basically gone.  I’m upgrading my technology and it will likely be a major improvement in my quality of life (speaking purely in the realm of hearing here – I have a great quality of life in general!).  

Having said all of that, I put the process in motion.  There are a number of other factors that come into play.  As you all know, there is a great deal of change  about to take place in the health care industry. Many changes will begin on January 1, so there is a feeling that I need to do this before the end of the year if I’m going to, while we know bilateral implants are covered,  we have good coverage, and I know I can use the surgeon and hospital I choose.  Those things might not change, but I really don’t know what impact the new legislation will ultimately have on my specific plan and benefits. I decided that if I have this surgery, I want to have it done before the end of the year.  

My doctor is actually out on medical leave until mid January and will only be back on a limited basis at that point.  That was another factor that made it a difficult decision.  He is the specialized specialist I’ve been seeing for years and has a great deal of experience with this type of surgery.  If the blood clots hadn’t happened, I would have had the surgery a few months ago and he would have been my surgeon.  I think the timing just hasn’t worked out for him to be my surgeon.  Maybe that is part of God’s guidance in this.  I don’t know.  I am scheduled for surgery with a doctor I will meet for the first time in November.  She works at the same clinic, and is also highly specialized in this area, so I’m sure she is more than qualified to do this.  I’ve checked on her experience and credentials as much as I can and am satisfied with the results.

Here is where things stand now:

October 28: I will have my follow-up appointment with my thrombologist.  Right before that appointment I will have an ultrasound on my legs to see if any clots remain.  We will discuss whether I need to be on some kind of anticoagulation medication long-term as a preventative measure.  He told me last visit that we can work around the surgery even if I continue on medication.

Nov. 1:  I meet my surgeon for the first time and go over the details of the procedure

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Nov. 13:  Surgery day!  Procedure is scheduled for 7:45 am.  I have to be at the hospital at 5:45!  Yikes!

I’ve also been in touch with my audiologist who specializes in cochlear implants.  She said it is typical at my clinic to activate the implants the same day as the post op check up which would be 3 weeks after the procedure.  We will be activating both CIs on the same day.  I will have two sets of processors (the exterior portion) and a few days later we will activate the other set.  We will try to squeeze in another visit or two before she and I both are on vacation in December.  This is all really exciting to me!  Chet and I meet with her on Thursday to order my devices!

I am going to have to decide where the line will be for me between unobtrusive and fun/stylish! You all know I like a little pizzazz in my life, so I want to have fun with this! There are some times, though, that you don’t want to be too bright and crazy (like formal night on a cruise, or a wedding or special event) so I will need to think about that. I am looking forward to seeing the actual devices again and “shopping” for the colors and accessories.

Yesterday I found out some incredible news.  I called our health insurance company with a couple more questions and found out that we have a “catastrophic limit” which is a maximum we have to pay in a given year (with a few exceptions).  We have already spent more than is typical this year for medical expenses, so the remaining portion is fairly small.  What that means is our actual cost will be drastically less than the “good news” number! It’s almost in the “too good to be true” category!  There are some specific criteria that have to be met to show that this is a medical need/necessity and if I meet that criteria, this is amazing news!  I should meet it with no problem, and I will confirm as soon as possible, but I am thanking God for this blessing! This is so far above anything I would have expected. I’m so thankful!

Soon I will be blogging much more regularly again. There is a lot about to take place. I will try my best to explain the medical aspects and the details of what is involved in getting cochlear implants and also let you know what my personal journey is like. I want to record what I hear and how I feel for myself, and I know there are others who might find that interesting as well. Part of my research as I tried to decide if this is the right step for me involved reading some blogs by other CI recipients so I would have a firsthand account of what the process was like and what to expect. Maybe someone will use my blog for the same thing. I know from the experiences I’ve had over the past year and a half that it takes a lot of mental and emotional energy to make these major adjustments. In this case, there will also be a physical recovery, although I expect that to be fairly quick. I have always been an optimistic person and I expect to do well, but I also am a realist and I want to prepare myself mentally for the reality of what the professionals I will work with have told me to expect and others who have been through the process. Each person’s experience is different. I am prepared to do everything in my power to make this transition as smooth and successful as possible. I will trust God to work out the rest.

I would appreciate your prayers. Please pray for wisdom and guidance throughout this process. Please pray that the surgery will be a complete success with no complications. Please pray that I will be one who has an excellent result and that this technology will improve my hearing and understanding dramatically. Please pray that there won’t be any problems with our health insurance benefits and payment. Please pray that I will have a godly attitude and perspective throughout the process. Please also give God thanks for this amazing option available to me and for the guidance He has already given me and the doors that He has opened. I know I have mentioned this several times before, but I am constantly grateful for the incredible support I have! So much has happened with my hearing and I can’t imagine getting through it all without your prayers and encouraging words. I once read a card that said that God wraps His arms around you with His church – I think that is true. Thank you all so much for being there for me and giving me so much love and support! I thank God for you.