This web page has been produced for several reasons:
It is not written to solicit a "feel sorry for me"!
Disclaimer: I am not a doctor. Or rather, as I saw someone write recently, "I am a doctor with only one patient, ME!" Therefore, the information contained herein may be inaccurate, stupid, or just plain wrong, and should not be relied on by anyone without checking with their own physician or other sources. I have strived for accuracy within my limits of non-medical training and understanding.
OK, now that we have that out of the way...let's get down to my story and what CHF is.
On the evening of Saturday, December 22, 2007, I was driving on our rural Arkansas dirt/rock roads in toward town. It was around 8 p.m. and wind was gusting to 35 mph with temperatures a little below freezing. The pickup truck I was driving suddenly lost power and engine killed when starting up a long hill. This is a rather desolate road and I didn't expect anyone to come along for quite some time. My solution was to start walking (downhill) to the nearest house, probably about a quarter mile away.
Within a minute or two, a lady driving a SUV came by and stopped for me waving my flashlight. Borrowing her cell phone, I called my wife to come get me. After thanking the lady, I turned and started walking back to the truck, maybe 100 yards away and just slightly uphill. Before getting to the back of the truck, I became terribly out of breath. I paused, leaning on the back tailgate for a minute, then got inside the cab. I was just gasping for air -- even tearing open my heavy coat and shirt to ease any restriction! It was like I had just run the 4 minute mile (not that I ever could) and out of breath, only 10 times worse. Never have I experienced this severe a shortage of breath.
In 5 minutes or so, the shortness of breath subsided enough for me to try once again to start the truck. It started, I turned around to head home, it stalled once again in about a half mile, restarted it, and met my wife coming to get me. She followed me home with no further incident.
The next evening, I was trying to move a heavy box in our garage when once again I experienced the same out of breath terrible experience after only minimal effort. After 5 minutes or so, it had subsided again, and being as stupid and stubborn as I am (those who know me can confirm the stubborn part at least), I did a repeat performance. This time it was even worse than the other two and I really thought I was going to die. After regaining my breath, I walked the 50 yards or so into our house, and with that little effort I was again short of breath but not as bad.
What was wrong with me? I've never had asthma before but from everything I knew about it, I was convinced I might have it. I'm usually reluctant to go to the doctor for anything, but I vowed to see my doctor the next day if possible. I did, and on Monday, December 24, I was quickly diagnosed by my medical doctor as probable CHF or congestive heart failure.
POW! Congestive Heart Failure? Sounds terrible! What? Me?
He did a chest xray, oximeter test and blood work, along with listening to my heart and lungs. The xray showed a very enlarged heart, and apparently I had fluid in my lungs. The oximeter test showed only 91% oxygen saturation of my blood whereby 95-100% is considered normal range. http://en.wikipedia.org/wiki/Pulse_oximeter.
I was put on Lasix, a diuretic, to help rid my body of excess fluids. I went back on Wednesday (Dec. 26) for a re-check. The Lasix was adjusted upward from an initial 40mg to 60mg. On Friday (Dec. 28) I was again checked and Lasix upped to 80mg. An Echocardiogram was also scheduled at the regional hospital for Monday at noon.
On Monday, Dec. 31, I underwent the echocardiogram test at Baxter Regional Medical Center in Mountain Home, Arkansas. It is a non-invasive test done with ultrasound type of equipment. Only the pressing of the probe into my chest and left side was uncomfortable. More information can be found at http://en.wikipedia.org/wiki/Echocardiogram Technically, this type of echocardiogram is known as a TTE, or TransThoracic (i.e., through-the-chest) Echo.
The results were forwarded to my doctor, and on my January 2 appointment he told me that the test showed I had an estimated 20-25% EF. EF stands for Ejection Fraction and is the amount of blood ejected or pumped out of the chamber on each beat. http://en.wikipedia.org/wiki/Ejection_fraction For me, that meant that 75-80% was remaining in the chamber -- not a very efficient pump. Normal EF is about 55-75% and my doctor told me that at 35%, one could function close to normal with some restrictions, and at 15% one could probably just be able to walk across a roadway before being exhausted. The test also indicated I had mitral valve leakage.
Wow! What news. I had absolutely no idea my heart was in that shape. Yes, I've had some very minor heavy chest feelings the past couple years that usually go away in a few minutes. I had seen my doctor in May 2007 regarding this and we both concluded it was most likely not the usual angina brought on by exertion since the day before I had spent 5 hours trimming cedar tree branches with no pain. A screening for various artery diseases a year ago gave me a clean bill of health. I've never had high enough blood pressure to warrant any medication.
Before referring me to a cardiologist, my doctor wanted to confer with another doctor he held in high regard. So, I continued with the Lasix, and he started me on the starter dose of Coreg, 3.125mg twice a day. More about "Coreg" a little later. He told me he'd be in touch with me, if needed, after contacting the other doctor.
The call came the very next morning...and I was again in his clinic on January 3. First an EKG (also called an ECG) was run on me and the results of it showed I had a left bundle branch block. The doctor explained this to me: an electrical signal is generated in the heart to cause it to contract (pump) and this signal flows to both the right side and left side of the heart. I was beginning my medical training in regards to my heart! The LBBB (left bundle branch block) is the technical term for the signal connection being broken and not being sent to the left side of the heart. It was still getting there through some other paths and in the process being delayed and weakened. What this means is that the right side of my heart pumps first, then followed by the left side. They are supposed to pump together.
He said it was time for me to see a cardiologist and gave me choices of one in Mountain Home and another in Little Rock that he would recommend. The one in Little Rock was Dr. Ben Johnson at St. Vincent Infirmary Medical Center and was the one he personally chose for his wife a few years ago. I opted for Dr. Johnson, and an appointment was made for next Monday morning, January 7. I would have at least a heart catheterization and possibly more tests as deemed necessary.
The 125 mile trip to Little Rock was quite tiring and a real emotional drain. All went well. At St. Vincent Infirmary Medical Center, Jack Stevens Heart unit, I received another EKG, a second echocardiogram (TTE), a TEE echocardiogram, and heart catheterization.
Results: treat with med (Coreg, ACE inhibitor, diuretic) as I was already started on, if not sufficient results, then candidate for biventricular pacemaker. The mitral valve leakage is thought to most likely take care of itself once heart is reduced in size and pumping better. My arteries were reported to be "clear". That was good news all around! No open heart surgery on the horizon at least. My EF was estimated by this cardiologist at 10% (!), but being already on Coreg might have altered results -- and my personal local doctor thinks this estimate is too low as he says I wouldn't be walking around like I was.
The TEE is another echocardiogram (TransEsophageal Echocardiogram), the same as what is conventionally known as a "regular" echocardiogram (TTE) except the transducer is put down one's throat to get a much better signal and picture of the heart action and valves. I was very apprehensive of this test as I felt I'd gag. But, even though I was conscious during all the tests, they did inject me with a sedative. It is a very interesting one -- I was conscious and could respond, but all this does not register in my memory! I can only remember two or three minor events during the close to an hour I was undergoing the catheterization and TEE ... one of which being told it was "over now".
I was impressed with the personnel and facilities at St. Vincent's Jack Stevens Heart Unit, as well as Dr. Ben Johnson. But I would just as soon not return there if possible!
The rest of January (2008) was pretty much weekly doctor visits. My blood is checked, I'm weighed, other vital signs taken, and my doctor, Dr. Richard Ahrens, has taken the time to inform me and to answer all my questions fully. He even loaned me one of his books on CHF. At most sessions, he's taken over an hour with me each time.
My present treatment plan is to continue on two diuretics (Lasix and Spironolactone), continue increasing the Coreg dosage (I'm just starting with 12.5mg twice a day on Feb. 1 -- the target dose is 25) about every two or three weeks as my body tolerates it, and to introduce an ACE Inhibitor starting in a couple weeks. If all this does not work and my EF is not improved enough, then I would be a candidate for a biventricular pacemaker.
The diuretics "dry" me out. I'm somewhat restricted in the amount of water and fluids I can have and must avoid excessive salt. The Coreg is an alpha and beta blocker which slows down the heart allowing it to work less. It also has side effects of making me a little dopey sometimes, and feeling generally yucky due to lowering of blood pressure. As my body and heart adjusts to each dosage level, we keep going up towards the target dosage which I'll most likely take the rest of my life. I feel like I have very little energy to do things. A shopping trip for groceries in our Wal-Mart tires me out. I also find it hard to concentrate on some things, although I feel my mind is still fairly sharp. I'm not in any pain, my chest pains from the past have gone away, and generally when I get up in the morning, I feel great -- at least for a couple hours.
Note: I generally use here the more well known "trade name" of the meds I'm taking instead of the generic equivalents I actually receive on my prescriptions. Coreg is Carvedilol. Lasix is Furosemide.
I never knew, nor much cared, about the human heart. I'm learning!
The heart is really quite amazing. Basically it is a self-controlled automatic pump -- in reality it is two pumps. The blood from ones body flows to the heart through veins and enters the right side of the heart where it is pumped into the lungs to be oxygenated; from the lungs it enters the left side of the heart which pumps it out into the body through arteries.
The usual problem that most of us think about with heart disease or heart attack is the blockage of arteries. That problem causes the heart attack or stroke. Although often related, it is not the same as heart failure whereby the heart is not able to pump enough blood through the system to fulfill needs. In the case of congestive heart failure, usually fluid surrounds the heart and often collects in the lungs, the heart grows larger to compensate for its inability to pump properly, and things tend to go downhill from there. This seems contrary to most things the body is able to do to try to heal itself. I wonder why? [Note: this "downhill" slide is known as ventricular remodeling in case you wish to dig deeper. http://en.wikipedia.org/wiki/Ventricular_remodeling ]
In my case, it appears that my arteries are clear, but for some reason my pumps are not working right. As I mentioned above about the LBBB, the left side signal to contract is not getting there properly and the two sides of my heart are not pumping in unison. The mitral valve is the left side valve in the pump and it is failing to close properly apparently due to a distortion of the shape.
Twenty-five years ago, a CHF diagnosis was a death sentence. One study reported life expectancy to average only 18 months from diagnosis. My doctor (who has been in practice many years) says his experience back then was a much longer duration. Today, with drug therapy like Coreg and ACE inhibitors, the outlook is quite changed and many live out their normal lives with CHF. This is quite encouraging to me, and I'm determined to "do what it takes"...
The web and internet is a wonderful tool of today. I've learned a great deal by surfing and carefully chosing what I read about CHF. My doctor has encouraged this too. One early website I stumbled upon was quite informative. It is written and maintained by a non-doctor CHF patient. After reading more about him (he started with CHF in his 30's), one can feel lucky not to be in that bad of shape. He has multiple problems besides CHF, and his CHF is terribly worse that mine. The website can be found at http://chfpatients.com and it is best to scroll down to the icon "Start here to find info fast", and then click on "The Manual" for a good overview of things.One more thing I might mention. As I said before, this whole diagnosis was a shocking surprise for me. Other than a few chest pains (none severe or sharp) I had no warnings. Well, that isn't completely true, but one would not recognize this as a warning for CHF: a cough which seemed to just hang on for months. I was sick with some flu-like symptoms around Oct. 1 (2007), but rebounded in couple days, but the cough hung on. It IS a symptom of CHF! And it has slowly gone away during January with my meds so that it is hardly noticable now. [but see later February writeup]
Sometimes we (and often doctors too) fail to remember that we as human beings have a body and mind which functions as a whole unit and often one malfunction can cause other parts of us to be affected too. What I am alluding to here is not only the obvious medicine side effects (e.g., diuretics can cause gout), but the mental state too.
In my case, the CHF diagnosis came as a complete shock. I received more hammering to my mind when I started web-surfing the topic and learning more about it. The possibilities I was facing were not good. In some ways, it was like going to the dentist to have a cavity filled -- the forethought of it was worse than the actual time in the dentist chair!
As mentioned in the web reference (chfpatients.com) above, I believe nearly all CHF'ers must experience some bouts of depression. So far, in my case, I've fought it off when it comes and goes. Every day, while getting used to the meds, I have my ups and downs. First couple hours in the morning I feel great (except no energy to do much), followed by periods of feeling "not so great" during the day. I'm ready for bed sometimes at 8 or 9 p.m., but then I find myself unable to sleep at 1 a.m. and often get up and on my computer to play Sudoku, check email, or try to learn something new on the web.
Starting this month, most of the rest of this web page will seem more like a "blog" in chronological order and probably will not be too interesting to many people except to let my friends know "how I'm doing". It will serve as one person's story of recovery.
For now, I almost feel like I dodged the bullet! Time will tell, of course. Even though CHF is very serious business, my outlook is good. I've had to adjust my diet some. If I get too much fluid retention, I will get short of breath, especially at night lying in bed. If I get too "dry", I'll start getting dizzy when getting up on my feet. So, as an example, eating salty potato chips is not a good idea! I learned the hard way. I weigh myself first thing every morning and log the value to make sure I'm not getting out of bounds with the fluids.
Feb. 5 - It has been about 5 days now that I've been on the 12.5mg twice a day dosage of Coreg and that higher dosage is quite noticable. The original 3.125mg dosage seemed to affect me for about 2 hours each time, but now, the 12.5mg lasts much longer in the effects, more like 6-8 hours of feeling lousy and fatigued each time I take it. Getting impatient; looking forward to ending this increasing dosage game.
Feb. 9 - It appears yesterday and today that my body is getting used to the Coreg dosage. I've had less effects and those I did have were milder.
Feb. 14 - Another appointment with my doctor for him to check my blood pressure, pulse, my "BUN" (blood urea nitrogen), potassium level, legs and ankles for swelling and listens to my heart and lungs. The BUN test (http://en.wikipedia.org/wiki/Blood_urea_nitrogen) gives him an indication of the effectiveness of the Lasix in drying me out when taken with other indications and how I feel. All was well except I was getting low on potassium, so add another prescription to the growing number. When I got the prescription filled and upon reading the printed pages supplied with it by the pharmacy with all the warnings, I wasn't really sure I wanted to take it! I did anyway and I'm still living to write this. [Forgive my style of humor -- I need to use it sometimes to cheer myself up.]
Since I was still not feeling very good (primarily due to the lowered blood pressure), the doctor and I decided to hold off on starting the ACE Inhibitor for another week. He has prescribed Lisinopril (lye-SIN-o-pril) at a starting dose of 5mg daily. I'll start on it when I feel ready. I expect it will have much the same effect on me since it too helps to lower blood pressure. Periodically he will raise the dosage of Lisinopril to probably 20 mg. or so and at some point, I can expect he will also raise my Coreg to 25mg twice a day. Once those targets are reached, we're pretty much at the end of the line with the meds treatment. If they do not work well enough, then I would face the pacemaker implant prospect -- not something I wish for, but would cross that bridge if and when we come to it.
I go back to see my doctor March 6. I'm getting a little impatient with all this but understand the wisdom of doing it the way my doctor has ordered. I'm the type of person who finds it very hard to "do nothing". Most TV is so boring and bad that I've dug out the hundreds of old VHS cassettes recorded 10-20 or more years ago and systemmatically going through watching old movies and TV shows. I lack the needed concentration to really do some of the microcontroller design and programming I love to do. Sleep sometimes continues to be a problem -- I'm so exhausted many nights by 9 p.m. that I may go to bed then only to get up at 1 a.m. and play Sudoku on my computer or surf the web for a couple hours.
Feb. 24 - Last week I started to feel much improved. The Coreg didn't seem to affect me at all and I was not feeling "yucky" most of the time. My wife came down with a possible variation of the flu going around a week ago -- the symptoms being mainly cough and throat congestion. She was quite sick for a few days but is now doing much better. I was all ready to start my ACE Inhibitor (ACEI) "Lisinopril" but held off until Thursday (Feb. 21) as I didn't want to start it at the same time I might come down with the flu-like symptoms if I were to catch it from her.
Of course, right after starting the ACEI, I started with the coughing again! A cough is one of the side effects of ACEI. So at this moment, I don't know if I'm coughing due to the side effect or due to a mild case of whatever my wife had! Well, regardless, the low dose of 5 mg daily ACEI doesn't seem to affect me much. I believe I've detected a little more feeling "yucky" a couple hours after taking it and this would most likely be due to it lowering my blood pressure even more. My little home-type BP monitor has shown my BP as low as 77/47 when I've checked during a yucky period.
I've received several questions from readers of this web page, so for reference I'll try to answer them. I am generally in good health -- the doctors have told me for years that I'm as healthy as a horse, although having owned a horse once, I question the wisdom of that comparison as horses can have a multitude of diseases! I have never been a smoker (with exception of a few cigarettes as a young teen "behind the barn", or garage in my case, and less than one pack as a freshman in college). My blood pressure has never been high enough to warrant use of drugs, just cautionary remarks by the doctor. (In fact, the BP was down to 114/78 last May 2007 -- was this an early sign my heart was not pumping efficiently?) The only other prescription drug I take (besides the heart meds) is for hypothyroidism. I was born in the middle of 1936, so do the math. I've been overweight nearly all my teen and adult life. I do not have diabetes. There is no unusual history of heart disease in my family, but since heart disease is the number 1 killer, yes, have had two uncles die from it. I have been fairly active most of my life and during my middle years was Scoutmaster for 15 years or so, doing hikes such as 25 miles in a day or 10 days on the trail in mountainous Philmont Scout Ranch. As recently as spring 2007, I would spend 5-7 hours in a day doing manual brush removal on our rural 40 acres. I don't ride one of the electric carts when shopping at Wal-Mart ;-)
March 6 - A few days ago I received a call from the clinic. My usual doctor (Dr. Richard) would not be able to see me this week and was not expected back for possibly a month. A newer and younger doctor at the clinic was seeing Dr. Richard's patients, so I rescheduled my appointment with him. At first, this was quite upsetting news, but I have gotten over it after seeing Dr. Bogle today. BUN and potassium checks were OK. As I still have some cough hanging on, it was decided to forestall any change in the meds until I see him again in two weeks. The cough seems to be slowly getting better. Since a major side effect of the ACE Inhibitor is a cough, it is hoped I don't exhibit this side effect. An alternative to the ACEI is available and does not have the cough side effect, but it is not as effective (ARB).
At this time, my blood pressure has risen (130/72) and I generally feel better -- but still lack energy and endurance to do much physical activity. The past week I've shoveled snow and used a chain saw. Both were tiring and I had to take my time. The doc says to exert myself slowly but not to overdo. I can judge things often by how I feel with a local Wal-Mart grocery shopping trip. On one, I was really exhausted and spent more time on their benches than walking the aisles but this was after visiting Home Depot and Lowe's. On another trip, I didn't need to sit down at all. I'm sure this "breather" will end for a while once my meds are adjusted upwards again.
One of my questions to the doc was "how low can my blood pressure go when I take it at home before I should panic?". He said if I went to an emergency room with my 75/43 blood pressure, probably the interns there would panic! But with the meds I'm taking it might be possible and not a cause for alarm. How I feel is more important than actual numbers; can I stand up without being faint or dizzy?
The plan is still to continue increasing the Coreg and ACEI to their target values. I "should" start feeling better once the target values are reached and I can start doing more physical exertion. Most likely this will be mid-summer, give or take a month.
March 20 - I've gotten to the point where taking the meds do not appear to affect me each time, and my blood pressure is probably not dropping real low since I have not felt "yucky" lately. At the doctor's office today it was 130/78 -- pretty normal. I continue to have a bad cough and I have come to the conclusion that with the diuretics drying me up, my mucus has gotten so thick and sticky that it gets stuck in the throat and causes violent coughing. I find I often have a bunch of mucus in my mouth and can wipe it out with a tissue and thereafter not suffer so much coughing. The cough has gotten some better but progress is very slow. My doctor checkup appointment today confirmed my thoughts on the mucus and he prescribed taking Guaifenesin to help thin and break it up. It does not appear at this time that the ACE inhibitor is causing the cough (which is the main side effect that prevents some people from using it).
As the doctor said, normally I'd be advised to drink a lot of water to help with the mucus and cough, but with CHF that is a "no no". Guaifenesin is an over the counter product with Wal-Mart carrying it as "Mucus Relief". Another med added to my growing list.
He also increased the ACE inhibitor (Lisinopril) to 10 mg. daily. I started on this increased dosage on March 22. Since my pulse rate has stayed down around the lower 60's, the doctor indicated that I may have topped out with the 12.5 mg twice a day dose of Coreg, we'll have to see.
On April 11 another echocardiogram was performed at Baxter Regional Medical Center (TTE type). As of this writing I am awaiting to hear of the results. It was done because I have perceived my progress in this battle has reversed in the past few weeks and I seem to be actually feeling worse than in previous months and seem to have less energy to do physical things before tiring out. My sleep has been a problem and I'm also still fighting the cough. The doctor has decided to leave my dosages as-is for now.
In regard to the cough, I've switched to Wal-Mart's "Mucus Relief Cough" which has the same amount of Guaifenesin plus a cough suppressant (20 mg. of Dextromethorphan HBr) added. This has helped. I've also gone back to cough drops, only this time the sugarless type which I hope will be easier on my teeth. (I was finding my sensitive teeth becoming just terribly super sensitive after using the sugar type cough drops so much.)
My old (original) doctor finally returned and I've seen him twice late this month. We've increased both the Lasix and Coreg dosages so once again I'm feeling the effects of the Coreg. The April 11 echocardiogram results were nearly identical to those of the December 31 test. This means the medication is not improving my condition -- still estimated 20-25% EF (ejection fraction). So the next step is the implantation of a biventricular pacemaker. Fortunately, my cough has very slowly improved, although as of the end of this month, I still have it to some extent.
The "usual" pacemaker is old stuff and rather common/routine now. It can be implanted with just minimal surgery with local anesthesia. Mostly its task is to keep the heart beating within safe limits and just stimulates the right side of the heart. My problem is with this LBBB (left bundle branch block) described earlier -- basically, the electrical signal to the left side of the heart is weak and delayed causing the left and right sides not to pump at the same time.
The biventricular pacemaker was only approved by the FDA early this decade and has an additional lead (or wire) that is fastened to the left side of the heart. Thus, the pacemaker performs the job of syncronizing the contraction or pumping of both the left and right sides together. The ordinary older pacemaker cannot do this as it has no signal to the left side.
That's really great that the BiV is now available! The only problem comes in with placing that third lead to the left side. The leads to the right side are fairly easy and straight forward to do. The left side placement is a different story and is only able to be done in about 9 out of 10 cases with the simple implantation surgery. If you are really interested to see what is done with a BiV implant, have an hour of time, and don't faint at seeing an incision being made, there is a good web video presentation done by Wake Forest and found at http://www1.wfubmc.edu/webcasts/Archives/Biventricular+Pacemaker+Implant.htm
Here's a paragraph from their web page which pretty well sums up what I have to look forward to: "Implantation of the biventricular pacemaker or defibrillator takes about two hours on average. First, the physician injects local anesthesia and makes an incision about two to three inches long in the pectoral area to create a pocket for the device. Using a guide wire he will obtain access the cephalic or subclavian veins. Next, the physician maneuvers the leads into position in the heart. The device is connected to the leads and slipped into the chest through the incision. The device is then programmed and tested. Finally, the physician checks everything again and closes the incision."
I was first scheduled to meet briefly with the surgeon who would implant the Bi-V pacemaker on May 15 at Mountain Home, Arkansas at a cardiac clinic he visits regularly. He is Dr. Scott L. Beau of Little Rock. At this meeting, another EKG was taken, some paperwork filled out, and I was interviewed. I met all criteria for having a pacemaker. I was especially interested in hearing from Dr. Beau what he felt my chances were of benefiting from the pacemaker.
One of the parameters shown by an EKG is the QRS time. Usually it must be greater than 120 ms. to be considered a good prospect for the pacemaker helping (although this is not a hard and fast rule). In January, my QRS time was 185 ms. and during this meeting it was 178 ms. Maybe a slight improvement from the meds or maybe just within the tolerances of error using different equipment each time. I have not delved into exactly what this QRS is or means, but it has to do with the delay between the right and left sides of the heart pumping I believe. (I'll probably get corrected if this assumption is incorrect.) The three letters are ones normally used to designate a certain waveform on the EKG chart. Due to this being a rather long time value for me, Dr. Beau indicated a higher probability of the pacemaker improving my condition.
My "procedure" or implant was scheduled for 1 p.m. on May 19 with a need to get to the Arkansas Heart Hospital (Little Rock) two hours in advance. In the following paragraphs I write about this adventure.
I must digress a little here to let everyone know that I had a M.D. riding along on my drive to Little Rock, in my room most of the time during my stay in the hospital, and again on the trip home. Wow! Who gets this great service? Well, it was our daughter, Dr. Kris Ziemba, who had just received the degree a week before. She is in the neurology field (not cardiology unfortunately) and will start her 4 years of residency at Mayo Clinic in Phoenix, Arizona this summer. She was on a dual MD/PhD program with the University of Kentucky in Lexington and obtained the PhD part last year. Her interests are in the research area. We're mighty proud of her and welcomed her support at this time.
We arrived in Little Rock about 40 minutes early, signed in at the front desk, completed more paperwork, and sat down in the lobby waiting to be called. Within a few minutes, I was summoned and two nurses started on the first prep which included another EKG, temperature, blood pressure, and a quick shaving of my left upper chest area. From here on, I was fastened to a monitor (blood pressure, pulse, respiration rate, heart waveform) and flat on my back. I was typically stuck (tortured) two times before a more experienced nurse came in and got the IV inserted in my arm. My wife and daughter were then allowed to be with me from then on, with only the operating room as the exception.
One o'clock came and went. I was hungery and thirsty, especially when my visitors ate some nice looking sandwiches the staff brought in. Two o'clock came and went. Still flat on my back -- by now starting to ache a little. We were then informed that the doctor was running late and that the 12 o'clock procedure was still waiting. A little after 3 p.m. we were moved to the room and bed I'd be staying in overnight. I was also permitted to sit up in bed. Started watching TV. Nothing but food ads and prescription ads on the channels it seemed. I found myself glancing up at the TV displaying a plate of nice looking beef stew (yum)...only a few seconds later shown that it was Beneful dog food in a bowl!
We were then informed that Dr. Beau had had an emergency and was at another hospital and that he still was not here, and the 12:00 procedure was still ahead of us. Groan! We started thinking about alternate plans in case my procedure was postponed until the next day. Finally around 5:15 p.m. a nice young man named Chris came in and asked if I was ready. Dr. Beau was on his way to our hospital. I was wheeled to the operating room, went through a lot more preparation being hooked up to that room's equipment, having my whole chest shaved on both sides, some surgical drapes (like a tent) placed over my head area, etc. I was fairly comfortable.
After another rather long wait while the personnel exchanged small talk, the implant surgery was finally started. I found out afterwards that they did not want to use very much "happy juice" (sedation) on me due to either my low pulse rate or low blood pressure (I'm not sure which they said). The so-called numbing of the area consisted of a series of multiple "bee stings". I'm not sure if I really felt the incision. I recall the doctor talking about completing the first lead (wire), an easy one. The second would be the more difficult and tricky one. He had it placed in just (what seemed like) a few minutes and heard him say about finding a good spot with 0.9 volts sensitivity. The third lead was easy and finished shortly after. They then warned me I was going to get zapped -- and of course I involuntarily jumped like putting electric leads on a frog leg. It wasn't too bad, but not something I'd like to have done again. The next things I remember was someone sewing me up.
I was wheeled out of the operating room at 7:09 p.m. and returned to my overnight room -- to be met by my wife, daughter, and some "get well soon" baloons. I was feeling pretty good and relieved that the procedure went so well. I finally could eat and drink too! I'll make the rest of the story short here: didn't sleep a wink that night despite two pain pills and two sleeping pills. Next morning, after an xray was taken to be certain wires were still in position, I got breakfast served and the representative from Medtronic (maker of my pacemaker) arrived and used his wireless equipment to do final set up of the pacemaker across the room while I ate. After more tests and instructions, I was discharged (you know, wheeled out of the hospital in a wheel chair).
As I write this, four days since the procedure, I do in fact feel better. I'm off prescription pain pills and using just Aleve. I feel pretty good except that I am still on the weak side and feel tired much of the time. Next up is a visit to my local doctor next week and with Dr. Beau the following week. I have been admonished about use of my left arm. I must keep it in a sling at night and never raise it above my head. I cannot drive for 4-6 weeks nor lift more than 5 pounds with my left arm. This is so the wire leads can be anchored better as the tissue grows around them. Recall that they go from the pacemaker buried under the skin on my left upper chest, through a vein to the heart. Only time will tell how much improvement I realize with the new expensive gadget inside me. Oh, in case you're wondering: battery life estimated 3-6 years and then I get to have it replaced (yes, incision, replace, test, sew up). More on the pacemaker experience later.
The Wal-Mart test is something I have jokingly named for my frequent shopping experiences at the area Supercenter. In the months prior to the pacemaker implant, I would need to sit and rest at least once, sometimes 2 or 3 times, on the conveniently provided benches within the store. Our shopping probably averages around 45 minutes or so each time. Longer if there is a long line to pick up prescriptions.
My visit to the store a week following the implant told the story of an already improved condition! I was able to complete all the shopping without resting (or riding a handicap electric cart) with the feeling I could have continued on for some time if it was needed.
I've been very cautious about reporting improvements in my condition, lest they suddenly reverse like a popped balloon. It has now been one month today since the implant that I am writing this and I can confidently report that my overall condition has improved without any doubt. I've passed the "Wal-Mart Test" multiple times now. I'm still not back to full strength and still tire easier than I think I should. My doctor tells me not to overdo my physical activity. In general, I don't get winded easily, feel good much of the time, and believe my condition is still improving. I'm down to 80 mg. per day of Lasix and suspect a further reduction may be possible. The Coreg and Lisinopril are not bothering me and yesterday I increased (with doctor's permission) my Lisinopril dosage to the target 20 mg. per day.
Permit me to make a few observations: I am not without pain. It is sometimes quite sharp and intense, but fortunately brief. Most of it is in my left shoulder and not exactly at the incision/implant site. My doc, two days ago, said that it is due to the healing and pulling apart of some of the cut tissue, some of the cut nerve endings, and from causes no one can explain. It is unpleasant, but is certainly bearable and a small price to pay for the very increased feeling of wellness.
Another observation: I have some very strange feelings and sensations in the heart area. That's the best I can describe them. They're not really what one would call "pain". I may be much more aware of anything I feel in the heart or pacemaker implant area. Dr. Beau, the implant surgeon, tells me these "sensations" are normal. That's what I wanted to hear! And I mention the healing pains and these feelings only to let someone else reading this and who may be going through the same thing know about them.
A June 5 brief checkup with Dr. Beau (all is healing well) also resulted in an appointment with him in 3 months when he will make some fine adjustments to the pacemaker. I've been reading the pacemaker manual and also the very informative Medtronic web pages -- it is amazing the information that the 25 microwatt internal 402-405 MHz. transmitter within the pacemaker can convey to instrumentation a few feet away. This includes recalling past logged events, amount of "dryness", and even an EKG waveform.
My routine visit on June 17 to my local personal physician netted no surprises -- all is well with things he is monitoring. I don't see him again for another month when he will do another routine check. He did confirm that many of the strange sensations and pains I'm feeling are about normal for an implant.
I managed to make it through another birthday and the healing month of June. Eventually, the sharp pains in the shoulder went away and were replaced by other strange low level pains and sensations. Just a few days ago, I happened upon a neat website for pacemaker owners. In reading the experiences of others, I see my feelings were typical of many. I've not found this information any other place. If you get a pacemaker, I'd suggest joining this website and reassuring yourself that what you are experiencing is normal. After all, who is the best person to tell you how it feels: one who has a pacemaker implanted, or a doctor who most likely does not have one inside him or her? The website link is shown in the references at the bottom of this page.
Even though I've healed mostly, I still experience strange stuff after 2-1/2 months. Probably I'm attuned more to pay attention to small things. I feel a little more fragile and dependent than I used to.
July became a rough month for me again. First of all, the record-breaking heat this summer helps little. Recall that I am walking a fine line when it comes to fluids in my body and bloodstream. Too much taxes the heart more and can result in fluid retention in the lungs. Too little causes drop in blood pressure and dizziness when standing up from sitting. I've found that working outside in the heat for even short periods of time upsets this balance easily. So, for the most part, I've taken the easy road and am staying inside an air-conditioned space. The grass and weeds will just have to wait until it is cooler weather. But even with that precaution, it seems this past month the balance has been more difficult to maintain.
For instance, I'm usually afraid of retaining too much fluid and try to err on the dry side. I started feeling very lousy again over a period of weeks, describing it as how I felt prior to the pacemaker implant. I was again listless, got out of breath easily after minimal exertion, failed the "Wal-Mart Test", slept a lot, and felt just run down and tired all the time. I had visions in my mind of the pacemaker failing or the leads (wires to the heart) coming loose. I increased my lasix dosage from 80 mg to 120 mg per day, thinking I was too "wet". Finally, a visit to my doctor showed with the BUN test results that I was VERY dry. He told me to skip the lasix altogether the next day and then start trying for a dosage between 40 and 80 mg, weighing myself each morning as usual and judging how I felt.
The good news is that his advice worked! I'm feeling pretty good again after less than a week. Seems his guess as dosage was about right. Also good news as he pointed out, if this lesser amount is right for me, my heart is "getting better". And I learned a little more how to detect when I'm deviating from that fine line.
This whole fluid thing has also alerted me more to watch my salt and sodium intake. After some consultation with my doctor, I am planning an effort to decrease my daily sodium and also my weight. Both will take some effort and should make my living more enjoyable as time goes on. I bought "The No-Salt Lowest-Sodium Cookbook" yesterday and will be trying to integrate my eating with many of what appears to be excellent recipes in this book. I'll report results later.
Meanwhile, as I enter the scorching month of August, I am feeling quite good compared to the past seven months and of course look forward to a break in our heat wave so I can do some walking exercises outside in our beautiful Ozarks.
"The best thing about the future is that it comes only one day at a time." - Abraham Lincoln
In early August, I again found myself "overdosing" with about 60 mg. of lasix. I must explain that it is very difficult for me to determine if I'm too wet or too dry. One symptom of being too dry is feeling dizzy when standing up from seated position. But this does not always happen with me, and sometimes when I am quite dry, I still have shortness of breath which is supposedly an indicator of fluid retention!
My doctor suggested I quit the lasix for several days, and then only take what seems to be needed to keep from accumulating fluid as indicated by shortness of breath. So I stopped the lasix on August 10. I didn't take any for a week, and still no fluid retention symptoms. That week stretched on for over two months! I was doing fine without the lasix!!! (What a relief that is, by the way!)
As colder weather came in the fall, I found it necessary to start with the lasix again. I'm still having my ups and downs in how I feel and the amount of physical strength I have. In general I feel okay, but still lack a lot of stamina and get tired easily. I'm certainly not back to where I was a year ago, but vastly improved from the pre-pacemaker days.
High tech is now with me...I now have the Medtronic "CareLink" monitor and have gone through the initial startup and the first quarterly monitoring. It is a small unit, plugged into power with a wall wart and plugged into the telephone line. About once every 3 months, the unit will send a signal to my pacemaker as I sleep (within 10 ft.) and the pacemaker will respond with just loads of data it has stored. The monitor then sends this via dialup telephone modem to a monitoring service which in turn prepares a report for my pacemaker doctor, Dr. Beau. This substitutes for office visits during the year. My next in-office visit with Dr. Beau will be next September. The Medtronic CareLink web pages show some typical data and reports possible from this smart pacemaker. (See references at bottom)
Just before Christmas and continuing until New Years eve, I fell in the "too dry" trap again. I was taking 80 mg. of lasix daily and a visit to see my doctor on Dec. 31, yielded very high BUN level and low blood pressure indicating I was much too dry. My daily weight log shows some indication of this, and I once again failed the Wal-Mart test, but the doc suggested I might be able to use blood pressure as an indicator too. Besides being a general indicator of fluid retention, when the BP drops too much, one feels "lousy". I surely hope this will work for me.
As I write this on Jan. 2, it has been two days without lasix and I am just starting to feel some better. I'll go without for another one or two days, then try to find the balance level, right now suspected to be around 40-60 mg. of lasix. Of course that depends on many factors such as my fluid intake (and type of fluid too), amount of salt consumption, and temperature. We (my doctor and I) suspect that less lasix will be needed in the hot summertime than the cold wintertime due to perspiration loss of fluids. I've heard from a couple others that they have trouble with the lasix balance too.
At this time, the taking of my other meds (coreg, lisinopril, etc.) do not phase me at all. Nothing like it was for the first few months of last year where I could expect to be almost out of service for a certain time after taking the meds. I feel my best in the mornings, then as the day wears on, I wear out. Sometimes short snoozes in late afternoon and early evening refresh me a little. I often have trouble sleeping all night and rotate multiple times per night between my conventional bed and my large recliner chair, or sometimes I get on my computer in the wee hours of the morning until I feel sleepy.
I thought it was about time (actually overdue) that I update this running history of my CHF adventures. Time has passed since the first of the year and generally I have had my good times and bad times over these almost seven months. Good times, especially around March, were quite good and I was feeling great with the exception of being limited in the amount of physical exertion I could do. Part of it, I believe, is the adjustment to the right amount of lasix I am taking -- we've settled on 20 mg. daily which is a pretty small dose. Recently, I have had more lousy and tired feelilngs. I suspect that it being hot summer that I am taking too much lasix and maybe not drinking enough water. My blood pressure, as taken at home, during periods of time that I don't feel well are on the low side. It is typically around 85/48 give or take about 4 points. It is when I see that second figure get down in the lower 50's or into the 40's that I feel "yucky". The feeling is general sleepiness and not wanting to do anything.
There are days when I pass the "Wal-Mart" test easily and some days when I don't. The same with my reduced work efforts outside our home, like running the Weed-Eater, or dragging a fallen branch out of the way.
I've also had some bad news -- my personal physician, Dr. Richard Ahrens, who has been treating me from the beginning has not been seeing patients again this spring and summer most of the time. The last time I was able to see him in early May, I came right out and asked him who I should consider seeing if he was not able to see me. After a little thought, he said Nurse Practitioner Shanna Pearson would be a good choice as she has attended all the seminars and training that he has on the subject ("...she should really be a doctor..."). I've seen her once at beginning of July and will see her again in August. The prognosis for Dr. Richard to resume seeing patients is not good. I will also start nosing around in an effort to find a M.D. who I would be comfortable with in the event my condition gets much worse and Shanna might not be able to handle it.
So, in summary -- I often have a hard time sleeping; I often feel listless and just plain "yucky"; I'm not able to do much sustained physical labor without resting a lot. I continue on my usual meds as mentioned many times before. I've gained some weight over the past year which I'd be better off shedding -- probably due to less physical exercise that I used to do. Maybe cooler weather will help this fall. Every three months I get remotely monitored (over telelphone line) as to operation of my Pacemaker. All has been good in that area so far and I see Dr. Beau in early September in person for an annual checkup.
Today is August 12 and about time to catch up on happenings. The above paragraphs were written about July 25 and shortly after writing it, I made the decision to go off my Lasix dosage as I felt I was once again overdosing on it. Symptoms included low blood pressure, increased resting pulse rate, mouth getting very dry especially at night, and just generally feeling very lousy. It had gotten to the point that I decided to take my doctor's advice that "my BP and how I felt" were better indicators than the BUN level from the blood test of my "dryness".
Within two days, I started feeling better. Within five days, I was feeling very much better. And in the couple weeks that I've had zero lasix, I generally feel *great* when compared to the several weeks before then. My conclusion is that during the summer months, maybe extending up through about November, I don't need the Lasix; and during the winter months, the minimal dosage of 20 mg. is enough. I never realized, but now know, that I could be that sensitive. I can do without the roller coaster!
Sadly, I must report that my primary doctor, Dr. Richard H. Ahrens Jr., passed away in late July. He was almost 66 years old and had cancer. He is sorely missed by so many in our little town and rural area. My August 4 appointment with him had been rescheduled before his death with ANP Shanna Pearson (Advanced Nurse Practitioner) for today, August 12.
Shanna, so far, has done a marvelous job of filling Dr. Richard's shoes -- she had worked so closely with Dr. Richard that it was almost like working with him today. She gave her blessing on my withdrawal from the Lasix and made a minor downward adjustment in dosage on my Lisinopril. I feel very comfortable with her.
For the first time in well over a year, today the nurse used the oximeter (see the earlier days for information on this) on my finger -- with the results of 97%. This is in contrast to 91% about 18 months ago. I'm a little surprised it was not used more often, especially right before and after the Pacemaker implantation to view improvements.
Next up in early September is an appointment with my Pacemaker guy, Dr. Beau, for annual in-person check and Pacemaker data dump. I don't expect any surprises. Life goes on -- even without that much energy to do a lot of physical activity.
No, I'm not talking about an infestation of deer ticks! I'm talking about the "ticks" of my Pacemaker and my annual in-person checkup with the pacemaker doc, Dr. Beau.
I finally had my annual, in-person, pacemaker checkup this morning. All is apparently OK. The guy who did the data readout told me a new battery is 3.2 volts and mine is reading 3.11; and that it is usable down to around 2.6 volts. (He says 4-6 years) He reduced the intensity of the pulse to the left heart side lead, so that should save the battery a little. I also asked him if there was any kind of adjustment that could help with my getting out of breath (heart not pumping enough blood through lungs) due to physical exertion -- and he replied yes and then made a change so that the pacemaker would increase my heart rate "more aggressively" upon encountering activity. We shall see if that improves things.
Dr. Beau nicely answered a few questions I had -- one in particular about use of a gasoline powered chain saw. He said I shouldn't have any problem as long as the engine was held away from my pacemaker. What I would notice in case of a problem would be either ceasing of pacing (not detrimental for short periods of time in my case) and/or the triggering of the ICD "shocking/defib" circuit which would probably make me drop the chain saw. This information pretty well corresponds to that which I have dug up on the internet. I just haven't gotten around to firing up my chain saw -- but will do so when the weather cools this fall.
I will continue to have quarterly "over the phone lines" monitoring of my pacemaker and have appointment with him again in a year.
Meanwhile, I've been good to fair the past month. We're in the process of getting a new puppy (he was born 8/27) from a breeder to supplement our aging "Hobo" who is approaching 11 years old. Another German Shepherd. This has helped take my mind off other things and my wife and I are quite excited. He'll be coming home in late October. Even though having a pet dog (or cat) takes some time and effort, I feel our Hobo has helped me greatly healthwise. If you doubt this, research will bear me out I believe.
Yes, very long overdue -- 19 months! An awful lot has happened in my life, mostly good news. My web page at http://ae5k.us/gsd gives an update on the puppy we acquired just after the last update. He's no longer the little thing we brought home in October 2009 -- he was about 110 pounds when last weighed at the vets office in January! Watch out when he comes charging at you when called.
In March, 2010, I had an unplanned week in the hospital. My surgeon told me that in his 30+ years of practice, he never had a patient like me who required both gallbladder and appendix removal. Yep, a two for one special. Throw in renal failure plus my existing CHF plus my pacemaker, and they had their hands full. The fine staff at Baxter Regional Medical Center in Mountain Home, Arkansas managed to grab me out of the grim reaper's grip. I guess it was touch and go for a couple days. Anyway, I escaped the nice adjustable bed and really good meals at BRMC in exactly one week, but still required daily nurse visits at home for the next 6 weeks due to the seeping wound needing care. All this is over, I've recovered fully and feel great again.
In June, 2010, I was going to several follow up appointments with the kidney doctor who ordered quite a few diagnostic tests. They showed up several deficiencies in my well being including very low B12 levels. Fortunately, kidneys tested good with no permanent damage. I also managed to find a M.D. who seemed to also practice non-mainstream medicine (also known as "alternative medicine"). He will remain unnamed here, but suffice it to say I do travel a good distance to his practice.
Now with my new doctor, this is where I get excited. I was diagnosed officially as a diabetic and received a glucose testing meter and test strips. One of my old doctors locally had prescribed metformin, but from all the reading and research I did, I opted to try to bring my blood sugar back into the normal range with a change in diet. I never took metformin, but instead went on the Paleo Diet for several months, and now continue on a modified version. My A1c test recently came back at 6.0 which is still higher than I'd like to see it, but has continued to change in the right direction. So, with continued care with my diet, I have conquored diabetes.
So that brings us to my CHF. My annual pacemaker in-office checks were done September 2010 and again January 2011. Every three months, it is done via telephone connection from home. The reason for the January check was that I was getting some "twitches" on occasion from the pacemaker. It was causing some other chest muscles to react to its pulses. Adjustment was made and now it very seldom occurs.
Now the great news for my CHF. My new (as of June 2010) doctor put me on several over the counter (OTC) supplements to see if that would help "remodel" the heart and help the ejection fraction (EF). If you have CHF, it might be worth looking into Amla, D-Ribose, CoQ10, and GPLC. Since I don't want the Federales shutting down my website, that is all I will say. My EF, as detailed above, stayed right around 20-25% even nearly a year after the pacemaker was implanted. I had another echocardiogram at the end of December and I was delighted with the new estimate of 40-45% EF !!! I started on the regimen in mid July and started to feel a lot better by September. In fact, one Saturday in September I felt better than I had in several years -- with a nice outdoor temperature and sunny day, I spent over 3 hours catching up on raking last years leaves, collecting brush and other debris, and other yard work without much fatigue.
I continue on the regimen plus quite a few other OTC vitamins and supplements. A recheck last week showed my B12 finally into acceptable range and a few other things improved into the normal range too. My doctor says that I have conquored the CHF, and we're now reducing the Coreg and Lisinopril and watching blood pressure (which has been in the 100/60 range for the past year). In general, I feel pretty good most of the time -- my bad days have been reduced a lot. All this has resulted in weight reduction of nearly 40 pounds in the past year too. All things seem to be working together to reinforce each other and to improve my health.
I get another echocardiogram in June and expect that 40-45% EF to either stay there or even improve. Is this the happy ending to a story? Time will tell I guess.
As mentioned above, I had another echocardiogram done on June 16. Today I met with my doctor and questioned his vision when he read the report to me. My EF is now estimated at 50-55% -- WOW!
Since mid-April, I have been off the prescriptions of Coreg, Lisinopril, and Spironolactone. I monitored very carefully my blood pressure and for the first few weeks it seemed to increase very slightly (less than 10 points). By mid-May, I started taking Hawthorn Berry and the blood pressure has returned to about the same as it has been the past year.
A great "side effect" to this change has been the almost total reduction of my persistent cough. I haven't had the need for even one cough drop for many weeks.
But all is not perfect. I will be seeing my Pacemaker doctor (a cardiologist) in a couple days to try to resolve a rather serious problem. In early May and again in early June, while gardening, my Pacemaker's defibrillator gave me an unexpected jolt. Believe me, this is not fun, and the possibility of a further jolt has me avoiding gardening. More on this when I find out.
Thanks to Dr. Richard Ahrens (Yellville, AR, now deceased), ANP Shanna Pearson (Yellville, AR), Dr. Ben D. Johnson (Little Rock), Dr. Scott L. Beau (Little Rock), my daughter Dr. Kris Ziemba (now at Mayo Clinic in Phoenix, AZ), my wife Carol W5CSJ, and our supportive friends. My former personal physician, "Dr. Richard", had taken well over an hour with me on many appointments to make sure I had all my questions answered. And just loads of appreciation to my present doctor who has set me on the road to better health.
In addition to references I give in the above text, here are some more:
JoAnne, K9JKM, has produced this brochure: http://home.comcast.net/~k9jkm/CHF_Brochure.pdf Thanks JoAnne!
Since getting my pacemaker, I've discovered a wonderful web site for those with pacemaker implants: http://www.pacemakerclub.com I just wish I had discovered it sooner while I was healing from the implant as it would have allayed most of my concerns.
Here's a little about CareLink: http://www.medtronic.com/physician/carelink/pacemakers.html -- you can find more by probing around the website.
I'll continue to update this web page with further developments (hopefully successes!) in my adventures with CHF. Any questions you may have, I'll try to reply. Please email me: donj at ae5k dot us
For those who have been periodically checking this web page, I've added a little free service to notify you if this page changes. See the small form at the bottom of the web page. On it, enter your email address (I never see this information) and when it asks for the page address, enter: http://ae5k.us/chf/index.html (Feel free to use it for other pages on the web you would like to monitor for changes. Notification email may take a day or longer to reach you after a change, but it is a neat way to monitor a web page.)
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