Hello again to all in the heart community, as as to my family and friends.
Well, as noted above, today marks 8 weeks since I was rolled into surgery to have mitral repair and MAZE procedure. As I have said before, these guys are WIZARDS! Truly pain-free and absolutely no complications.
My recovery has also been pretty much textbook. I had very little trouble with sleep and gradually increased walking times each day. The weather here in Stuttgart was unseasonably mild (generally in the 60s), so it felt great to be outdoors and hike through the woods. Before starting back to work this week, I was averaging about 20 miles a week.
Getting back to work this week has been a success. Lots of catching up to do -- sort through lots of email, catch up on routine paperwork, get updates from co-workers who picked up my focus areas while I was out.
Medically, the only issue I have had is getting the INR (blood thinning factor) up to the desired level (2.5 - 3.0). The last blood test finally got to the 2.5 level, so I have a 2-week appointment in place of a weekly appointment. My "90-day" check with my cardiologist is scheduled for the last week of September. Will have an echo then to make sure all the function is as expected. Hopefully, will get release then from the last meds I'm taking (BP med, diuretic, and stomach acid inhibitor). will also discuss how long the coumadin will continue, but I don't expect it to continue past mid-October or so.
Overall, life is great! To family and friends, thank you all for your prayers and support the past couple months, as well as the weeks and months leading up to surgery. For all my heart community compadres, I wish you the very best recovery and rapid return to full activity.
Encountering a glitch in the new website. I tried to update the information on my profile (Surgeon, hospital, date) but when I scroll to the SAVE button at the bottom of the form, the web page snaps back to the top of the page and will not allow me to save the remainder of the entered information.
Hello again all you friends, family, and fellow travelers in the heart valve fix community.
First, it seems like many of our "journalers" (is that a word?) are just lining up for their procedures or have just gone through one. To each and every one of you, best wishes and fervent prayers for a quick and full recovery!!
As my title indicates, tomorrow (22 August) will mark 6 weeks since my surgery and 5 weeks at home. The past two weeks have been generally uneventful. I have a two-week check with my new GP on Monday, primarily to check INR level and adjust the blood thinners. (For you technical types, the thinner of choice here is Germany is "Marcumar", a form of coumadin.)
I try to take my BP and pulse at least three to four times every day and record the data in a spreadsheet that I can print out and take to my doctor visit, letting him see what's been going on since I last saw him. Both my cardiologist and the GP seem to like the idea.
This has alerted me to the only real issue I have encountered. I have issues with rather drastic changes in my pulse. At times, my pulse will be in the 38-44 range -- other times,more like 72-80. Sometimes (several days) when trying to feel my pulse I will feel it beat 1-2-3 then pause, then repeat. Sometimes the 1-2-3 sequence is at the slow rate, followed by another sequence at the faster rate.
I have not noticed any change in the way I feel during these times. At my last visit with the new GP, I reminded him that I have a long history of slow pulse and he opined that my heart may just be trying to get back to that slower rate. He didn't seem concerned and I am not either.
Consequently, I have been carrying on with my daily walking routine. I am now going out for about an hour or a little more each day. My pace has been picking up, too, so I am getting in about 3.5 - 4.5 miles at about a 17:30 to 18:00 minute per mile pace.
All the scabs have gone from the incisions and tube punctures. I have read several times that, absent complications, the heart is generally healed from its incision and bumping about at about 6 weeks. Since that's where i am and seem to have no complications, I'm ready to move on. I will start back to work on 2 Sep and will make a follow-up appointment with my cardiologist sometime that week. I am hoping to get another Echo done before the end of Sep to confirm everything is in working order, then start weaning off the meds.
Bottom line: life is good!! Uli and I are excited about being fully repaired and fit to continue on for many years to come together. I sincerely wish the same to every one of you.
And one final piece of advice to non-patients reading this: Next time you have an opportunity to be examined by a medical professional, ask her/him to listen closely to your heart and carotids for any unusual sounds. These issues are apparently more common than you know and it is worth discovering early so you can map out the treatment. Many, maybe most, won't require surgery, but precaution and knowledge are the key.
Hello again, family, friends and fellow heart patients!
Hitting the magic 4 weeks since surgery seemed like a big deal before surgery, but not so big a deal now.
Healing progresses, although not always in a straight line. Had a so/so day on Thursday, with pulse/heart beat all over the map. Pulse had been consistent 70s/80s since coming home, but woke up Thursday morning with it hanging around 40-44. Would do that for 5-8 beats, then a series at a rate of more like 80-90 for 3-4 beats, then a pause, then repeat. Pulse was so erratic the BP machine was too confused to give a BP reading. With all that going on, I basically sat and rested all day. Was a bit worrisome for Mom, but I spent a month in heart flutter back in January, so not worried about a couple days.
Yesterday (Friday) it was better. Still trying to establish a lower pulse -- it was not unusual for me to have a resting pulse in the 40s/50s a year or so ago before the mitral valve leak became acute. Felt much better and got back into my walking. I had been doing between 3-4 miles at a time each day, rested on Thursday, then 3 miles walking again yesterday. My pace is good - about 18-19 minutes per mile. Overall, getting better. I have an appointment with a GP doctor on Monday - my cardiologist is on vacation. Purpose is to check blood clotting and adjust Coumadin dosage if necessary. Will let him know about the pulse thing at that time.
I have read several places that, absent any complications, most doctors consider the heart healed in about 6 weeks after surgery, so I will continue to take it easy and focus on recovery another couple weeks at least. Gradually adding a few more normal activities to the mix -- a little mowing and more up/down stairs. Still have some sensitivity int eh right beast/pectoral area as nerves regenerate, but no longer so tired when using arms. Still planning to go back to work at the beginning of September.
Best wishes to all approaching or just coming out of surgery.
Well, yesterday marked 3 weeks since surgery, 2 weeks at home. Overall, I think I'm doing very well. All the stitches have been out for a week and the various punctures are essentially healed. My incisions (one for surgery and one for the heart/lung machine) are also about healed. Still have some annoying skin sensitivity across the right breast where nerves are regenerating.
No BP issues this week. BP was getting too low the week before, so my cardiologist took me off the ACE-inhibitor. For those of you who follow the numbers, I have been staying in the range of 104/68 to 118/78. Pulse generally in the 72-82 range throughout the day.
Physically, I have been walking every day. Gradually building up the distance. Started the week at about 1 mile twice a day. My walk yesterday was 2.6 miles continuous in just under 50 minutes. My ultimate goal is at least one long walk per day of 3-5 miles, with other shorter distances as time is available. The key is to maintain a pace that does not push my heart rate above 100. So far, when I return it has been about 90-92. Saw my cardiologist yesterday and he is happy with all that.
Only real problem I have had is anything that calls for lots of arm movement seems to tire me out. It's getting much better toward the end of the week, but I still notice it. Just part of building back that strength and endurance.
For all those in waiting or in recovery, best wishes to you all. When we get to point where surgery is necessary, this is what will restore us to full health. Just remember that the journey is worth it.
Leading up to my surgery and in the couple of weeks after, I have come to a few observations I thought I'd share with this community. I am certainly not fully recovered yet, so these could change a bit or there could be others, but maybe these ten observations will be useful to you, wherever you are int your treatment journey.
1. One size does NOT fit all. Each of us is different; we will chart our own pathways through this journey. Don't get down if you don't follow the same path another patient took. By the same token, just because another had a setback here or there, don't automatically assume you will as well.
2. Recovery is NOT a straight line. Both in the hospital and after coming home, some days are just not a perky and bright as others. Many people will say you can expect to get a little better each day, but truth is there will be days when you feel crappier than the day or two before. Just recognize it set yourself to get back on track.
3. Be/stay a fit as possible before surgery. I am convinced that the stronger your body before suffering the trauma of heart surgery, the better it will be able to recover. As much as possible, build your lung capacity before hand. Build strength in your legs and arms, Lose some weight, if you can.
4. Go for as experienced a team as you can get. Heart surgery is a very precise task. I was fortunate to have access to a facility with some world-class surgeons, a facility that is relatively small (61 beds), and that does NOTHING but heart surgery. This means the staff is 100% focused on caring for heart surgery patients. There are certainly many general hospitals out there that provide good care; your situation may not allow you to get to a top-flight facility, but get the best you can access.
5. Incisions do heal -- you will be able to move. Huge fear I had and I think all of us share is what the recovery will be like. How painful? Infections? Stitches? My surgery used a minimal (right thoracotomy) technique -- while I don't have to deal with bone mending, the spreading of ribs resulted in feeling like I was kicked by several horses! But, just over two weeks post-surgery, the incisions are healing well, the stitches are all gone from the drain punctures, and I can actually sleep on my side.
6. Breathe, breathe, breathe. Can't emphasize this enough. If you do nothing else, pay attention to the physical therapy sessions where they teach you the deep breathing exercises. Make yourself use the inspirometer multiple times per day. When you do use it, pull in a deep a breathe each time as possible. It will be uncomfortable, but is critical to minimizing other problems and helping your recovery.
7. Minimize the pain meds -- keep your head clean. Every one of us has a different pain threshold. What is soreness or stiffness to me may appear to be extreme pain to you. Perhaps I was fortunate, but I never had to ask for a pain med. I did not come home with any prescriptions for pain meds. I used two Tylenol two different times after coming home. Has kept my head from being all muddled by pain meds and avoids the potential suppression of other functions often associated. Don't try to be tough; if you hurt, tell the staff. But don't ask for it or take it "just in case."
8. For me, information was/is a strength. Many people are somewhat squeamish about reading up on or viewing videos about heart surgery. Others have said that all the patient reports of problems made them more afraid. For me, I did a ton of study on all aspects of my condition, how it could be corrected, possible complications -- you name, I researched it. As a result, I had absolutely no doubts or concerns going into surgery, I fully understood when professional tried to explain things, and I was not surprised by issues during recovery.
9. The insurance company is not REALLY evil -- it is just a big bureaucracy. I venture to say that every one of us is making use of some sort of insurance to cover the hospital expenses. Whether private or government programs, all of them receive dozens or hundreds of files to process daily. They don't intentionally lose or delay your your authorization request. They just have to work through the stack. Meanwhile, we get frustrated with the delays. I was able to find some very helpful Customer Service reps who helped me find out the exact status of my authorizations and refine the request from the hospital. Frustrating, but it can be resolved -- keep working on the Customer Service department until you find someone who will help.
10. Don't be shocked by the changes that will happen to you. After the trauma of surgery, your body will react in many ways. All of these happened to me: appetites changed, foods tasted different, schedules shifted, sleep positions changed. Go with it -- think of it as an adventure.
Overall, try your best not to be afraid. If you have the best team you can get and you keep all these other observations in mind, you can keep a positive outlook. That will help you both pre- and post-surgery.
Finally, do not be afraid to share what is confronting you with your family, friends and co-workers. They will be a tremendous source of support and prayer for you, particular at times you are out of it and don't know any different. A special thank you to all my family and friends who have offered their support.
Best wishes to all of you. This is an important step and will change your life, almost certainly for the better.
Yep, today marks the first week at home and two weeks since surgery.
Generally, this has been a great week. Made a couple trips to my cardiologist (Mon & Thur) to check my INR level and adjust the coumadin dosage. For those who don't know, INR is a measure of how quickly your blood clots. A 1.0 means normal clotting time, 2.0 means twice the clotting time, etc. The goal is to achieve and maintain a 2.5 for 90 days following surgery. Minimizes chances of having a clot form that could break loose and cause trouble. Hopefully, after 90 days the internal incisions will be healed and we can do away with the stuff.
Had a bit of a low BP issue in mid-week. I have been taking an "ACE-Inhibitor" (Ramipril) since January that lowers BP and blood volume, allowing my stretched mitral valve to shrink back toward normal. Maintaining reduced BP post-surgery is apparently a good thing, allowing internal incisions to heal. But when it drops to levels like 96/62, that is a bit too low. Brought it up with my cardiologist yesterday and he gave the OK to put the Ramipril on hold. I take BP 6-8 times per day, so if it starts to hang in the 120-130/70-80 range, I can add a half tab back into the med dosage that day. Seems to be working well so far.
Also had stitches removed from the drain holes and other punctures yesterday. Was no issue and all are healing well. My incision (about 4 inches under my right breast) is healing, but the tissue that was spread is still a bit sore. Also, my right breast over to mid-chest was numb to the touch earlier, but is beginning to "wake up" today, giving some soreness and tenderness. Tylenol seems to be handling it with no problem.
Working with the breathing device 3-5 times per day. Am able to max out the "inspired volume" each time at 4 Liters, so lungs seem to be working well. Also, trying to get in 3-4 walks per day. Distance has been about .3-.5 mile each time -- ready to begin extending the distance a little at a time.
So, those are my recovery events one week on. Still compiling a list of personal observations and plan to post those later.
Meanwhile, for those of you getting ready for your surgery or in some phase of recovery, best wishes. You are not alone!
Last time, I left off on the day of surgery, Day 0. At the end of that post, I was into Intensive Care and the infamous tube was gone
Day 1: First of three nights in ICU. (Fri/Sat) still groggy from the anesthesia, but woke up a number of times when nurses would scurry in and out to check a monitor, record readings, or perform their other sacred secret rituals. Things became more clear during the day. The nurse assured me she had spoken with my wife by phone and that she would be able to come later. They let her in shortly after 2:00 pm for a 30-minute visit. A couple hours later, she got another 30 minutes. Otherwise, I was in and out of doze-ville most of the day. One thing I do recall: I have a history of low heart rate, so when my pulse leveled out at around 50 or less, tey hooked up the wires to a small pacemaker unit to keep the pulse a bit higher (70s).
Day 2: The second night (Sat/Sun) was much the same as the first. Seems like every time one of the nurses would come into the 4-person ICU room, I would hear it and rouse. Sunday morning came the first solid food - typical German breakfast: slice of bread, slice of cold cut, slice of cheese, slice of tomato, a yogurt. All I could eat was the slice of meat and the yogurt. More alert during the day, but still a few dozes. During one of them, the pacemaker disappeared. Early morning, the therapist came by to make sure I was doing the arm and hand exercises to pump fluid out. Had me sit on the side of the bed and I stood up before they could stop me. Since I was up, they took the opportunity to change the sheets without having to roll me about. More solid food, but I could only eat about half or less. Same visit schedule as teh day before. World Cup soccer final scheduled to begin at 9:00 pm and hoped I would get to leave ICU to be able to watch -- NO GO.
Day 3: Another night of frequent dark visitations (Sun/Mon). I had been able to hear the staff in their break room across the hall as they monitored the World Cup final (Germany was playing). On Monday morning, bot the nurse and the ICU doctor confirmed they intended to get me moved that morning. first, the drainage tubes came out, then the pacer wires. By noon, they had me relocated to my room. My wife was able to come for longer periods, starting 10:00 am to 9:00 pm.-- she stayed with me through dinner time. Therapy person came by in the afternoon with a specially-designed walker to get me out into the hallway and around. Toward evening, they took out the catheter; now I could change from "the gown" into my PJs. Couple more excursions down the hallway, but limited. Still not much appetite.
Day 4: (Tue) Got permission to unhook from the vitals monitor in order to was, shave, and move about, but reconnect while in the bed or sitting. Vitals monitor showed I had developed some minor ventricular pre-firing every several beats, so they introduce a heart rhythm medication. Tired of PJs, so I put on regular clothes. Allowed for a little more strolling about. By evening, they no longer wanted to bring my meals -- I could walk to the cafeteria and fend for myself. Blood test sampling every day, but easy since the aterial cannula was still in my left wrist.
Day 5: (Wed) During rounds, the doctors said all looks pretty good, so looks like we could plan on getting released on Friday (Day 7). They put in orders for the bank of pre-release tests (chest x-ray, more detailed blood tests, echocardiograph). We surrendered the walker thing back to the therapists as I was stable enough to walk without it. Had to attend a Physical therapy class in which they taught us a few more exercises, then a test of whether I could go up a flight of stairs without raising pulse. Received a GO. Good visit by my surgeon that afternoon -- he confirmed all going well and Friday looked on-schedule. Good visit by my Pastor and his wife, as well. Sent some stuff home with my wife as she departed.
Day 6: (Thur) What had become a regular day interspersed with the last of those tests. The Station doctor came in after lunch to go over what had taken place during the hospitalization and to answer any general or specific questions about post-release. Spent good time with me and my wife answering all questions we had. Thursday evening after dinner I packed suitcase for the next day departure.
Day 7: (Fri) The Clinic promises to have its discharge letters ready by 11:00. Ours was finally ready a little earlier (about 10:30). Letter is important because it goes to the referring doctor and includes list of what medications are in use. The hospital can not provide meds post-discharge, so the first stop on the way home was to my Cardiologist so he can write prescriptions. We had called him the day before and he was expecting us. One light moment: when he came out of his office, he wanted to feel my pulse. He took up my left wrist, but that one had been victim of the aterial cannula, so the artery had receded. My Cardiologist felt for a moment, then said: " No pulse. The patient is dead."
By noon, we were home.
Next time, I will offer some overall observations that might be of use to you guys and gals.
Since I had no internet connection in the Clinic, I could not do daily updates. However, I want to try to hit the high points day-by-day as yet another reference point to those of you still waiting and nervous.
I will designate the Surgery Day as "Day 0."
Day -2: Letter from the Sana Clinic had instructed me to report for admission on Wed morning at 10:30. I filled out a brief form and was shown to my room. Lunch, chest x-ray, echo. The letter had said my surgery would be "on a work-day immediately after admission." Next day surgical schedule was finalized late afternoon and the doctor informed me I would not be until Friday. They gave me a day-pass and let me go home for 24 hours.
Day -1: Returned to the Clinic by 3:30. Had a Physio-Therapy class at 4:00 where we were given some breathing exercises and introduced to our very own personal Inspiro-device. Then off to get an EKG and shaving. Dinner in the cafeteria. While there, the Medical Director of the clinic came in and informed me he would be performing my surgery the next day. Back in my room, a mild sleeping pill to ensure no nerves prevent a good sleep.
Day 0: Nurse woke me at 6:00, said she would return in about half hour. Meanwhile, I had to do the full surgical body wash and change into "the gown." As promised, the nurse returned about 6:30 to make sure I had done all correctly, gave me a mild sedative. A few minutes before 7:00, off we go to the surgical suite. I remember transferring to the Operating table and being covered by the anesthesia nurse. The anesthetist came up and the nurse said "now comes the Sandman."
Next thing I recall was being awake in Intensive Care. One thing about this Clinic -- they made it very clear that family members were not wanted on the day of surgery. The surgeon assured me the night before that he would call my wife personally as soon as he got off of surgery, and he did. She also had access to the Intensive Station by phone, but they would not allow her to visit until 2:00 the afternoon after surgery. Was not a problem and they made sure to let me know several times that they had been in contact and she knew how I was doing.
They told her that they planned to bring me out of anesthesia gradually to avoid fighting the breathing tube. Apparently that's what they did -- I vaguely recall the tube coming out, so I must have been sufficiently responsive. I do not recall it being uncomfortable.
I will pick up with post-surgery days in the next post.
Yes, I know I left you hanging in my last post, but not internet access in the hospital, other than on my phone. Wayy too slow!
My surgery was on Friday, 11 July. The surgeon was the Medical Director of the clinic. If any one is in Germany or Europe and you need your chest and heart cut open, Sana Heart Surgery Clinic in Stuttgart is the place to go, THESE GUYS ARE WIZARDS!!!
Not only are they pioneers in many procedures, one of the few facilities in Germany certified to do TAVI, they are also committed to be recognized as virtually pain free. I must say I was 99.9% pain free - only issue I had was waking up in middle of the night to use the facility and failed to get up carefully. Felt like a knife in my side -- but passed quickly.
Came home Friday, 18 July, seven days post-surgery. I will post later the "week in review. "
Got all admitted, surgeon interview, anesthesiologist interview, X-ray, echo-cardiogram, blood draw all to learn that the schedulers have me on the Friday schedule for surgery. Guess there were too many in line and tehy needed to go ahead.
Anyway, the surgeon gave me an overnight pass to return home rather than just kill time in the hospital. When I go back tomorrow, will get the breathing exercise class, shaving hair away, surgical soap scrub, and maybe an EKG.
Won't have a precise surgery time until the daily schedule goes final tomorrow, but expecting morning hours (midnight-to-noon EDT).
All update plans remain the same, just delaying 24 hours.
Well, at this point we are a bit less than 36 hours from admission and pre-op (coming up on Wednesday) with surgery expected on Thursday (as long as nothing turns up in pre-op and no higher priority emergencies come in to the Clinic).
Very relaxing long weekend. Got all my task/errand/chore list completed. Tomorrow will be a work day devoted to making certain others in the office are caught up on the issues I have been working, getting my time sheets in, setting up my extended medical leave, and general housekeeping for a two-month absence.
I have written before about the superb care I received from my Cardiologist and his staff. Today we made a veggie tray with dip and took that into his office as a "Thank You" for excellent care. They all seemed to be quite pleased. Looking to continue great care after coming home.
So how do I feel as the surgery date approaches? I must honestly say I am not fearful or apprehensive. I am confident that this is the right time, right place, and right experts to perform this surgery. We place all that into the Lord's hands and will remain at peace with it.
One other point -- I have continued to search out information about mitral valve repair, particularly for patients like me who are more or less with no symptoms. I found some excellent articles on the Mt. Sinai web site that discuss the advantages of mitral valve repair vs. replacement. Lots of great information there, but I will try to sum it up. Their studies show that there is no proven medical treatment for mitral regurgitation; patients treated as "wait and watch" or "wait and take med" have a shorter life expectancy than the general population. Those studies also seem to say that early repair (not replacement) appears to give patients the same life expectancy as the general population. They do offer a strong caveat: for patients with few or no symptoms, repair surgeries should be performed by surgeons and centers who have extensive experience, in the multiple hundreds per year. The studies seem to that this strategy vastly minimizes the risks and maximizes the probabilities of successful results.
That confirms what my Cardiologist recommended to me.
NOTE: Every case is unique. Every patient is unique. Choosing to go ahead with surgery early is a discussion you must have with your cardiologist. And choosing who will do that surgery and where is also a careful discussion you must have. I just offer up for your consideration how it has developed for me.
Best wishes to you all. I don't know if I will have access to internet from the Clinic, so not sure how long before I will be able to update again. At the latest, once I get home, will update you on the experience.
Thanks again to all for your good wishes, prayers, adn support.
As we begin this July 4th weekend, I realize that one week from today by this time I will be on the recovery road.
We received the letter from the Clinic confirming 9 July as my admission date. That day will include several pre-op tests and assuming nothing unexpected turns up, I will be operated on the next day. At this time, I do not have a specific time of day forecast, although I would expect to begin in the morning hours.
German recovery standards are significantly more conservative than in the US -- I have been advised by the Clinic to expect hospitalization of 7-10 days, rather than the 5 days that seems to be "standard" in the
We plan to enjoy a relaxed July 4th weekend, complete a few errands, do some grilling, and just hang out.
OK, last weekend I posted on here that readers should "Stand by for NEWS!"
Well, we finally received confirmation yesterday (Wednesday) from the Insurance that all the procedures are covered. I forwarded that to the Surgical Clinic and received a response late in the afternoon that this does complete the file and the Surgical Department would schedule my admission "tomorrow." At the time, I was not sure if that would be an email or if they would generate a letter that would come in the mail sometime in the next few days.
This morning I received a call from my Cardiologist's office. The Clinic had called them and wanted to confirm an admission date. They were double checking that the proposed date is suitable for me and we confirmed.
So, verbally, I understand they want me to arrive at 1030 a.m. on Wednesday, 9 July 2014 for admission to the Clinic. The surgery will be the next day, on 10 July.
With that confirmed as acceptable, I now expect we will get a letter in the next few days confirming and including instructions on what to bring, what to expect, and so on. With two weeks to prepare, now we go into high gear making our lists of all the preparations and arrangements. We will have a four-day weekend next weekend (4th of July holiday is on Friday, and our commander has declared the following Monday as a Family Day). That will give us a couple of days when German businesses are open to make any arrangements needed on the economy.
While Uli and I have known this was coming, and have even been hoping for it to come along before anything undesired turns up, with a date that is two weeks away this is now suddenly all too real! We remain certain this is the best time and place to get this procedure done. We know it has extremely high probability of returning me to full active levels I previously enjoyed and will be a permanent fix. The approach of time, however, will bring some tension and a touch of nerves.
What can you do? For the next two weeks, when you offer your prayers, please include us in that we can prepare for this peacefully and minimize the stresses associated. I will do my best to update as we learn anything more and update how we are getting along in preparation (but mostly on the Journal page.)
Thank you all for the love and support you have already expressed to us. We appreciate all of you.
That's how broadcaster Paul Harvey used to lead into his radio program every day.
Well, yes, it has been about three weeks since my last update. All this time has been due to waiting for additional information from the Insurance. Turns out the original request to the Insurance only mentioned the mitral valve repair, but not the MAZE procedure.
I didn't know that at the beginning of this week. All I knew was that the Clinic wanted "some additional information" but no idea what. Supposedly, they had requested that info, but not received any response. I called the insurance customer service again to see if they had received a request -- nothing. They asked me to contact the Clinic directly and give them a Toll Free number that will reach someone 24/7.
I found the Clinic's generic info email address on their website, but I had also harvested an email address of a person at the clinic, so I crafted an email on Tuesday evening. Wednesday morning I got an email response that there must have been mis-communication, that all insurance info was on file, and she would have me scheduled by that afternoon. Then two hours later I got another email informing me the Chief wanted the MAZE procedure verified, that a new request had been sent to the insurance and it will take another few days.
I called the insurance again and spoke to the person to whom the Clinic sent the follow-up request. She confirmed receipt, informed me it has been sent to the office that verifies coverage, and they should respond with a revised letter in "a couple days or so." Since nothing has come yet, I will be looking for the letter on Monday.
The Clinic assures me that as soon as this comes in, they can schedule me for pre-admission consult/blood tests, etc. and admission about a week later. Of course I do not know how backed up they are -- will surgery be in two weeks or two months?
OK, learning more about patience and Lord's timing!
Last post was on 24th (Saturday week ago). Since then, the insurance letter confirming coverage came via email late Monday. Of course, it was password protected and the password unlock does not work consistently. I finally printed the letter, scanned it back in and emailed it to my cardiologist.
Thursday was a German holiday, so we do not know yet whether the clinic finance office has given the go-ahead to the schedulers. Hopefully, we will hear something this week.
Meanwhile, I am finally over most of the after-effects of the nose bleed two weeks ago. Still some soreness in both sides of my nose, like getting over a severe sinus cold/infection. Can finally breathe through both side, most of the time. No more blood thinners.
Otherwise, in good shape, without symptoms. I got a new running watch with a heart rate monitor strap and have been recording heart rate changes while running. Still run/walk/run training routine -- 3.5 - 4.5 miles 3/4 days per week.
My theory is that maintaining heart/lung fitness right up to surgery should make it easier to recover.
Well, another week has passed and se still do not have a date set with the Surgery Center. Hopefully, though, we are making progress.
The previous answer to my Cardiologist's staff when they inquired about no surgery date was that the procedure coordinator was on vacation for a week and that person would return this past week. When we still had no info by mid-week, I re-engaged with my cardiologist. He finally was able to get in touch with a colleague who told him they are waiting for an approval letter from the insurance that the procedures are covered.
When I learned it is an insurance delay, I called the Customer Service rep for my insurance. After explaining the situation, he was able to track that they did receive an email from the Surgical Center, together with a Medical Report attached. Of course, all documents were in German, so they had to translate them.
The Customer Service rep said the translation was completed on Thursday. Next step is to compare the proposed procedures in the Medical Report to the insurance to ensure coverage, then issue an approval letter. He said the approval letter should be ready in about two working days and will come to me and to the Surgery Center via email.
So, another waiting period, but hopefully by mid-week we will be into the scheduling period.
We still have not received any schedule information from the Surgical Clinic, but I want to take an opportunity to expand on the final paragraph of my previous post.
My cardiologist, who has been guiding me and treating me since January, deserves special recognition! If you are from my generation, you might recall the US TV series “Doc Welby, M.D.” Well this doctor is the closest I have ever experienced to a Doc Welby.
As I have mentioned previously, he is both an internist and a cardiologist, though he has practiced exclusively in cardiology for 30 years. He has his own private practice with two great nurses. He has his own EchoCardiograph machine and keeps it up on the latest versions and software. He does his own Echos – does not assign them to a technician. His staff does the other things like Stress Tests, and EKGs. He also has the capability to so a Stress/Exercise Echo (we did that once).
Although a German doctor, he has also studied in the US. For a number of years, he took annual fellowships to the US to share in the most current diagnostics and treatments. He is a Fellow of the American College of Angiology and a Member of the American Heart Association.
He always takes time to discuss all options and possible treatments with me. In the first visits, he mentioned I might need mitral valve repair, or it might be possible to control with medical treatment and observation. He fully explained from the beginning the advantages of a repair versus replacement. When he referred me to a local hospital for CardioVersion to correct Afib, he asked the cardiologist there to do a post-procedure Echo. That cardiologist recommended surgical repair rather than treatment. My doctor felt that was a bit premature and wanted to treat for another 30 days.
While he was beginning to lean toward recommending we proceed with surgery, he still wanted another opinion. He then referred my case to one of the top German Cardiology professors who now does mostly research to get a second opinion. He provided the raw data from three different Echos so the consulting doctor could parse the data in his own ways. Only when the consulting doctor confirmed did he recommend to me that we go ahead with surgical repair, plus a MAZE procedure.
On top of everything, he has been completely accessible. Any question called in to his office is answered the same day. Several times, I sent him an email via his web site – not only has he responded, he frequently responds late at night from home.
All-in-all, I could not ask for better care or advice.
Well, about 11:30 p.m. Thursday night, I woke up with a nose bleed. I've had them before, so I got up and packed the nostril as I usually do. Three hours later, it was still bleeding!! (Thank you, blood thinner.)
We went to the local hospital at 3:00 a.m., only to learn they have no Ear, Nose, Throat specialists any longer. The duty doctor packed it with gauze and sent me to the main hospital in downtown Stuttgart. The ENT doc did an exam and used a chemical-treated gauze to stop the bleeding. Then he packed a super-size tampon into each nostril and told me they have to stay in place for 48 hours. Return on Sunday to have them removed.
These things amounted to an artificially induced massive sinus headache!! Intense pressure all weekend against the sinuses. Eyes hurt, head hurt, blood pressure went way up. Could sleep no more than 20-30 minutes without having to get up to wet my dry cracked mouth. Absolutely miserable!!
On Friday morning, I got my wife to call the Cardiologist to ask whether I should cut the thinner in half or even stop it. His office called back to stop it for now and come in on Monday for an EKG.
Returned to the hospital on Sunday. What a relief to have those tampons removed!! Unfortunately, they bruised and abraded the tissue in the nostrils, so now I have swelling like a very bad cold.
So, today I went to have the EKG. All good news. All still in Sinus rhythm and pressure back in normal level. Since I have not any more AFib since the CardioVersion, my cardiologist feels I am very low risk for stroke, so OK to discontinue the thinner for now. He reassured me that the Clinic has all my case details and he has spoken with one of the surgeons at length. They plan to do a mini-thoracotomy Mitral Posterior Leaflet repair, then a MAZE procedure. He says I should have schedule info in teh next day or two.
We waited a full week and when nothing arrived from the Surgical Center, I sent my Cardiologist an email that no info had arrived. I asked him if he could contact someone there and determine if they needed additional info from me.
Got a call back the next day from on of his nurses. She contacted the Clinic and learned that they have only one person who coordinates surgical dates and that person is on vacation all week!
The nurse promised she will follow up on Monday and hopes to have some info for me on Monday or Tuesday.
Unfortunately, we still do not have a surgery date. The final pre-op test was a Cardio CT scan -- it turned up no blockages and no "stenosis" (hardening) in any coronary arteries. Bottom line, NO cardiac Artery Disease.
My cardiologist is working with the hospital to arrange all the details. I think the delay right now is they have no experience with our Insurance. I raised the issue so they could make certain they can bill the insurance directly, rather than bill me and force me to reimburse from insurance. Since thay have not worked with this insurance before, they have to contact them, get an account registered, make billing arrangements, etc.
Hopefully, that is well underway. I have provided info on the Provider portion of the website that gives all those instructions. Once the business office is satisfied, I expect them to get us on the operative schedule and give us a date. My cardiologist says the backlog is not too great, so we should not have to wait TOO long. Having decided what to do, the waiting is now the wrost part of this whole process so far.
Got an email from my Cardiologist on Friday afternoon last week, even though he was on vacation. He says in the email that he has been in touch with the surgeons at the Sana Heart Surgical Clinic, has shared all the data on my exams and discussed with them. He said their response after reviewing and discussing was that this will be "an easy, straight-forward procedure."
Only one things remains for pre-op -- I have to get a Heart CT scan. I have an appointment at a Radiology practice for Friday morning, 8:30 local time. This requires no anesthetic and takes only about a half hour. They inject some dye into the arm, then run you into a CT scanner to check out all the artery functions. Essentially, this is a specialized, fancy, high resolution X-ray. This is a required precaution to ensure there are no calcifications or other blockages that could complicate the surgery.
When the Radiologist reads all the images and makes his report back to my Cardiologist, all will be complete to make the final referral and set a date for surgery.
10 Apr -- Cardio Status Update -- We Have a Decision!!
Journal posted on May 19, 2014
Well, we have heard from all the experts and the consensus is that I will have surgical valve repair.
I do not yet have a date set -- I expect it will be sometime in May, probably around the middle of the month.
My Cardiologist has made initial coordination with the surgical clinic to clarify what is needed next. Basically, they need to ensure there are no arterial blockages or constrictions. The echo procedures have all shown negative, but the surgeons want to confirm either via a Cardiac Catheter procedure or by CT Scan. Cardiac Cath gives more precise info, but requires another session of anesthesia. In my case, the surgeons replied they don't need that -- CT Scan will be sufficient.
Since we are now bumping up against Palm Sunday, German schools will be out all next week and most German offices and services will be closed or on minimal staffing. My Cardiologist told me today they will engage with the clinic right after Easter to work out all the pre-op tests and activities; he said I should expect a call that week with more information about when and where.
A bit about why we decided to go ahead with surgery --
As I had related earlier, my Cardiologist made copies of all my echo data and sent to a World Class researcher/professor at the University of Leipzig. That guy was then able to use that data to create his own views of the heart and components, as well as the accompanying electrical activity. His independent conclusion was essentially the same as my Cardiologist. They agree that my case is not one that easily falls into the Yes or No buckets. It turns out that after the rhythm conversion in early Feb, combined with the medicines I have taken, the back flow of blood in my valve is greatly reduced, maybe around 50% or less of what it was. That, taken by itself, would suggest waiting, but it's not quite so clear. I still have some "ghost" ventricular beats that show up on EKG -- they result in periods when my pulse speeds up for a few beats, then skips one or two. That causes some concern that the arrhythmia could re-occur, perhaps at any time. The arrhythmia is what causes heart structure (muscle tissue) damage and increases danger of clots/strokes.
One other factor weighs against waiting -- my Cardiologist says most patients in my situation can continue with medical treatment and have adjustments to the medicine dosages or change meds as needed over following years. In my case, however, I am taking a relatively low dose of med. This results in a blood pressure and pulse that, at least parts of the day, are at the low end of the desired range. With my history of low pulse rate (for years I have had pulse in the 40s), I am excluded from other forms and classes of meds and the doctor really has no other good options for changing the dose to manage results. In any case, treatment with meds is not a CURE, it only corrects the symptoms. The underlying structural cause remains.
After weighing all that, my Cardiologist somewhat reluctantly recommended I proceed with the surgery and get the structure repaired before other complications develop. By all reports, this is a procedure that is as minimally invasive as possible, has very low complication rates (at least at this clinic - less than 1%), and is considered a permanent fix with full return to pre-leakage normal with likely no meds. As it turns out, while in the OP they will also likely do an additional procedure in the atrium of the heart that is 90% effective at preventing future arrhythmias.
So now we are shifting to planning for pre-op activities, consults with the surgeons, making admission arrangements, working insurance details, and getting a final date set. All that will begin the week following Easter and might take 2-4 weeks, depending on availability of various actors.
Bottom Line up Front: Still waiting for a final definitive recommendation from the Cardiologist on whether I should have repair surgery. Firm recommendation hopefully in another week or so.
It has now been 6 weeks or more since the electo-Cardioversion procedure that restored normal heart rhythm. Since that time, I have continued to take a blood thinner daily, along with a blood pressure/blood volume pill and a diuretic. The thinner is designed to protect against the remaining small chance of a clot dislodging and causing a problem. The others are designed to cut down pressure and volume to allow for heart size to reduce.
Over the past 6 weeks, I have had at least 3 full Echocardiograph studies. These are a very high-resolution echo and Doppler study that show tissue structure, real-time function and movement, blood flow and direction/volume, etc. the amount of detail is really quite amazing. According to my cardiologist, these things, together with regular EKGs, show marked improvement in overall heart function, including the mitral valve function. The images still show that one of the flaps on the valve is still sort of stretched and does not close properly. As a result, there is still some leakage backwards through the valve, but not nearly the volume or “jetting” direction as showed up previously.
At the same time, the tests also show a few “shadow” heart beats from time to time. This is not enough to truly be considered “arrhythmia”, but the extra shadow beats apparently suggest an arrhythmia could return.
I also wore a portable EKG recording device for about 24 hours. That data showed that my pulse rate has times where it is down in the 40s – that is not unusual for me; I have had a low pulse rate for many years, most likely associated with a regular running habit. What that low heart rate means, though, is that one or more classes of medicines is ruled out of consideration because they have a known effect of significantly decreasing heart rate.
The current dose I am taking of the blood pressure med is a pretty low dose. Since it is already having a significant impact (routine blood pressure is in the lower range of normal) my cardiologist feels that rather few options remain to adjust medications to maintain a “medicinal treatment” approach.
In his written report, just received last night, he says he is not yet comfortable in making a definite recommendation. AS an internist, he would like to be able to keep me on a purely medicinal treatment, avoiding surgery. On the other hand, he seems to feel the treatment options may be too limited and seems to be leaning toward doing the surgical repair procedure.
So, before making a definite recommendation, he has consulted with another cardiologist at the University of Leipzig. That doctor requested a re-do of all the echocardiograph data at the highest possible resolution. We did that study last Thursday. My doctor had hoped he would get a report back from the consulting guy and would have something for me this week.
I called the cardiologist office this morning, only to be told they have not yet received feedback from the consulting doctor. So, we wait another week.
In my heart of hearts, I am beginning to think he will likely recommend proceeding with the repair; I think he wants confirmation from a colleague before making that recommendation.
17 Feb - Heart Checkup Update -- Good news for now
Journal posted on May 15, 2014
One last quick update on the Mike Sr. saga before we turn in for the night. Received the written report of last week's cardio procedure on Thursday, so called on Friday and got an appointment with my Cardiologist to go over the report. Had that appointment late this afternoon (Monday).
All continues to go well. The heart rhythm continues to be normal. BP continues to be normal and Oxygen saturation is measured at 98%. My Cardiologist has reviewed the report of the procedure and the recommendations that came from the attending physician. As expected, my Cardiologist feels the attending physician is a bit hasty in recommending a valve repair right away. He says he wants to wait another 3-4 weeks, then do another EchoCardioGraph (a high-tech heart ultra-sound with doppler radar thingies) to measure any changes in size and function of the left atrium and the left ventricle. At that time, if there is significant change for the better, then we can probably wait on a repair procedure -- he says he has multiple patients who have followed this course of treatment and have not required surgical repair for years.
On the other hand, if there is NOT significant change, or if he confirms there is still significant increased size (dilation) of both chambers, then we will talk about a repair procedure.
Bottom line: for now, he says it is fine to return to normal activity. I can gradually start back to running as I was doing in the past couple months. Keeping in shape is important. Otherwise, I continue to take some Blood Pressure med, some diuretic, and a blood thinner to guard against clots/stroke. He says he will see me again in 3-4 weeks, we will do another EchoCardioGraph, and discuss the best course after that.
So, all good news for now. No worries, no serious limitations. We go about what we need to do each day and see what we find out in 3-4 weeks.
Meanwhile, keep the thoughts and prayers on target.
OK, as promised, here is the follow-up after the Cardioversion procedure today (see previous email).
Bottom line: The procedure successfully converted the heart rhythm back to a normal regular pulse.
All was really pretty low-key. They ran a current EKG, then took me to an "ICU-like" larger room. All the monitoring equipment was hooked up there. When they injected the anesthesia into the IV line, I don't even remember closing my eyes. Next I knew the Doctor came by and said the procedure was successful.
They kept me on the monitoring equipment for another few hours to make sure all remained in order. Then the supervising doctor came for me and did another EchoCardioGraph. Afterwards, he explained to me that there is still an issue with the Mitral Valve. It still does not close properly and blood continues to regurgitate back into the Atrium and back toward the lungs from which it came. Longer term, this can cause the arrhythmia to return. His recommendation to me is that this should be corrected through surgical repair. I think that will be his prognosis/recommendation in the report he sends back to my Cardiologist.
For now, we are back home, regular heart rhythm, and plan to rest up over the weekend. I will return to work on Monday, keeping things "light" with minimal exertion until cleared to resume running and exercising. I expect I will see my Cardiologist next week or so and we will discuss the next steps.
We have had assurances from many of you that you have held us up in your prayers. We appreciate and thank you for your support. We have no idea at his point when the surgery will be, if that is how we decide to proceed. We will certainly let you all know when we progress to next steps.
OK, what all have been waiting for! Actually, not so dramatic.
Had my Cardio check-up today. We have been on blood thinner for about four weeks now, so it has had time to dissolve any possible clots that might have formed in the upper chambers of the heart. The doctor doubts any ever formed, but this is a precaution. I still have an arrhythmia issue, so the next step is to do a procedure called an ElectroCardioConversion, or "CardioVersion" for short.
This we will do at a local hospital on Thursday, this week, 6 Feb. It will be done as an out-patient procedure. Arrive at hospital about 1000, have the procedure about late morning/mid-day, wait 3-5 hours to see if all is OK, then go home.
The procedure consists of using two paddles like the defibrillators you see on TV to send a quick charge across the heart. This will be done up to three times, as necessary. They tell me that in 90% of cases, one of the three shocks is successful and causes the heart to return to normal, regular rhythm. There are virtually no side-effects -- my Doctor says that he has never seen anything more than reddened skin in 30 years of practice.
After the procedure, we will know immediately if it successfully returned the heart to normal rhythm. The 3-5 hour watch period is to monitor and see that it does not return to arrhythmia.
We expect to return home on Thursday evening. I will take off on Friday to rest at home and avoid any activity that could cause the arrhythmia to return.
During today's check, the doctor also said he finds a few changes for the better (lung air pressure is back to normal levels), but it is too early yet to say or even forecast whether surgical repair to the valve will be needed. That will likely require another 4-6 weeks of taking meds and seeing how much change takes place in the blood flow leaking around the valve.
That's what we know for now. I am actually looking forward to getting this procedure done -- the arrhythmia can get to be noticeable sometimes and is annoying. It will also help (or should help) in the shortness of breath.
So, Thursday is our procedure day
Keep praying for us. We take all the support we can get.
This additional update went out to a broader audience after I updated the kids:
Wanted to update you all, now that we have a final series of tests and a planned course of treatment. We had provided an interim info update to the boys last weekend, so this was follow-up to them.
Bottom line: I have a problem with Mitral Valve and it has caused some complications. Good news is that it looks like it might be correctable without major surgery, but only time will tell. Summary of details below.
Best news is that my cardiologist says this whole issue will be resolved and corrected within three months. With luck and prayer, the medicine approach will be successful and no surgery required. Of course that means lifetime of heart meds. Alternatively, if the meds do not work in next 8 weeks or so, then surgery will be required to repair the valve structure. Good news about that is that it is NOT a replacement, which would have to be redone in 8-10 years. A repair, if we go that way, should be permanent.
Doctor also did NOT restrict my activity. He says running is good — keeps the heart muscle strong. His only caution is that when I get short of breath, not to push it — slow down and even walk for a brief distance. Just means I’m not as fast as I used to be!!
If you have any questions, please ask. We will be deciding about surgery in late Feb/early Mar. Will let you know how that works out.
For now, please keep us at the top of your prayer list. We do not worry over future possibilities — we have resolved to live one day at a time.
16 Jan 2014 - My first cardiac status report to our kids.
Journal posted on May 14, 2014
This went out to our kids (2 grown kids in the States) on 16 Jan 2014:
OK, guys. Had the appointment today — cautious good news.
Doc says my heart appears very strong, so says I should continue to be active as possible.
There are two problems: the valve leaks and the atrium is out of rhythm.
For now, we are NOT scheduling surgery. He started me today on a dual medication that lowers blood pressure and blood volume and also includes a diuretic. This has a chance of shrinking the heart and decreasing the valve leak. That will take about 8 weeks to see if it works or not.
Meanwhile, the blood thinner med I started a week ago has to go another 3 weeks, then we go to the hospital for one overnight to do the shock thing to restore regular rhythm to the atrium. That “should” correct the rhythm issue.
When we go back in end of Feb, the cardiologist will check at that time whether the back flow has decreased. If it HAS, then we stay with that med regimen for life. If it has NOT significantly decreased, then we go for the surgery.
One way or another, the cardiologist said we will have this corrected in the next 3 months.
So, no surgery planned for now. We will do an overnight in first week of Feb to correct the rhythm — the hospital overnight is only because of the anesthetic (Propofol). It is only a 10-20 min procedure, with no cutting, but they want to be careful about the anesthetic.
So, late Feb, we will get final decision on the surgery possibility. Until then, we take med, stay active, and see what happens.
I am a 63 year old Male in pretty good health. I work for the US Government as a Planner. About 1 1/2 years ago, I got an opportunity to move from Kansas to join the Plans team in US Africa Command (Africom) in Stuttgart, Germany. I am a retired US Army officer; my wife and I have spent many years in Germany, but we never thought we would have one more chance to come back. So, in October 2012 we packed up and moved to Stuttgart for a three-year tour.
I have been a runner for many years. When we were in Kansas, at age 59, I had built up my mileage and ran my first Half-marathon (2 hr 04 min). Over the next year I ran two more.
As a result of my running, I have had a rather low heart rate (as low as 42 resting HR) for many years. During a routine physical exam in 2007, my doctor asked for an ECG for reference. The 40-range HR showed up and she referred me to a full Cardiac Exam. I did all the stress tests and the Cardiologist concluded I had no problems.
About a year after we arrived in Stuttgart, I stopped by the local military health clinic for some information and they were doing a blood pressure and heart listening screen. The PA told me I had a heart murmur. It did not seem too significant, so we noted it and agreed to monitor it. About a month later, however, in November 2013, I went for a run and felt like there was no Oxygen in the air. I could not catch a breath. By the beginning of December, I could not run a quarter mile without stopping to gasp for breath. That convinced me to find a local Cardiologist and get checked.
I made the appointment for early January. He listened to my heart and immediately put me on his Echocardiograph table. That exam revealed I had rapidly developed severe Mitral valve regurgitation and atrial fibrillation as well.
That is the background. From that point, I crafted emails to inform family and friends of my condition and how we were proceeding to treat it. What follows is a capture of those emails in chronological order that explain in layman’s terms what we were learning at the time, how we were treating, and prospects. I will post each one in order, with a few edits.
My intent is to create a record of this journey and share it for others in everyday layman’s words. My hope is that others doing a Google search will come across these words and take the time to trace our journey from the beginning. If this can help others understand what is going on an resolve the anxiety, then the time is well worth it.
Please leave comments if you have questions or find anything useful. I look forward to your feedback.