Organ recital - congestive heart failure

I didn't blog this past weekend because I was blessed with feeling too well and had other more amusing things to do.

Ever since I got sick two months ago, I've been prodded and poked, tested and scanned till I had information overload. So I checked all the info against research that I did on the Net - for which I also thank God. Today I went to my doctor armed with a sheaf of notes and, by the end of the consultation, we were on the same page. Yes, the first diagnosis of COPD (chronic obstructive pulmonary disease - from smoking) was partially correct but it is not the whole story.

Eleven years ago I had to have major surgery to remove a colostomy that had been put in because of diverticulitis emergency surgery the year before. My doctor at the time refused to allow me to have the surgery unless I had stents placed in the arteries in my heart. He felt that, if I didn't, I could die during surgery (as I had "died" the year before during the emergency surgery - but was resuscitated.) I refused as it the procedure was too new at that time and too many of the stents (small tubes to keep the arteries open) failed and had to eventually be replaced by bypass surgery which is open-heart surgery - major! I knew that my heart was not perfect but I did not think that it was so bad that I needed stents.

I decided to consult one of the best cardiologists in San Francisco whom I knew from my days working in a hospital pharmacy. He told me that I was fine for surgery and that he would make sure I got through it okay but he also told me that I had the beginnings of CHF (congestive heart failure) which would get worse as I aged.

Well, I survived the surgery and was fine until 5 years later when I had a heart attack. Again I was told that I had to have stents in my heart arteries and once again I refused and checked myself out of the hospital. I hadn't been at home for very long before I asked Chas and Andy to take me back to the hospital because it was obvious to me that I was dying and, if stents could give me a few more years, I was willing to take the chance. I was shipped off to Eugene for 4 days, had 3 stents put in and came home with a new lease on life, feeling better than I had in years.

That is until two months ago when I had to go the the ER because I could not breathe and was writhing with abdominal pain. I knew it was not a heart attack but I also knew that I was dying. I figured it was because of smoking and drinking and that I was paying for the sins of my youth. I told the doctor that I was suffering from COPD and fatty liver disease and that's what she diagnosed me with.

Two months later, after reviewing the results of all the tests that I had and checking the info against research that I did on the Net, I realized that I had to face up to a fact that I had been denying for too long. Like my mother and father, I had CHF.

A friend of mine (who is having his own battle with declining health) emailed me over the weekend and I replied that I too was having health problems. By that time I already knew that I had CHF but I was in such denial that I could not bring myself myself to tell him and deleted the words "congestive heart failure" in case I jinxed myself. Instead I just said that I was having problems with my heart and lungs.

But I couldn't fool myself. I knew from all my research that I had CHF. It's not a happy diagnosis. Men my age have a 50% chance of surviving 5 years after diagnosis. My dad died when he was 6 years younger than me - 57. Women last longer and the disease progresses more slowly. My mom lasted till she was 81. She knew that she had CHF in her seventies and told me that she did not want to live past 80. It's a debilitating disease.

Yes, I brought about my sickness partly through the sins of my youth but also inherited the tendency from both parents. On my mother's side it comes from a genetic heart defect that most Afrikaners/Boers have. I wrote about it here where I said:

In 1901 and 1902, the British torched more than 30,000 farms in the South African Republic and the Orange Free State and placed all the Afrikaner women and children in the world's first "concentration camps," where, because of overcrowding and unsanitary conditions, more than 25,000 Afrikaner women and children died.
...
22,000 Afrikaner children died in the concentration camps in the first ten months. Nearly one quarter of all the Boers in existence at the time were killed by the British. As a result the gene pool was so small that many Afrikaners have a genetic heart defect to this day.

When I was a kid, I used to get what the doctor called "heart palpitations" and "bronchial asthma". I now know that those were warning signs of CHF. CHF can be caused by quite a few different things but it is often hereditary and, once you have had a heart attack, the chances of getting it are increased. And taking recreational drugs, boozing and smoking as I did doesn't help either.

One thing that I did learn in my research is that CHF cannot be cured - only some suffering can be alleviated - and death can be delayed for a while by modern medicine. So, I decided to check out alternative herbal medicine. But I didn't put all my eggs in one basket.

I learned that two of the conventional medications are useful for treating CHF: digoxin and lisinopril. Digoxin has been used for centuries in the form of the foxglove plant and lisinopril is a drug of the angiotensin-converting-enzyme (ACE) inhibitors class. (The ACE inhibitors dilate the blood vessels. This allows the blood to flow more freely to and away from the heart which lowers blood pressure.) It was developed from the venom of a poisonous snake of Brazil. Also both digoxin and lisinopril strengthen the muscles of the heart muscles which become flabby as the heart enlarges.

I had some lisinopril left over from when I had the heart attack. I had to stop taking it because it dropped my blood pressure too low - often as low as 80/60 and once as low as 60/40 just as I was about to have stress test which had to be canceled. I decided to take it at bedtime this time round and so far my BP has not dropped too low. I also started taking the herbal remedies hawthorn, astralagus and osha last week. By Saturday I was feeling really well. So something is working.

Also I had a thought about dying that had been bothering me. Death by CHF is a horrible affair. Basically you slowly drown/asphyxiate on the fluid in your lungs because the heart muscles are too weak to pump the lungs clear properly. Then I remembered how morphine had been pumped straight into my lungs when I was in hospital before Christmas. It had the immediate effect of relaxing the lungs so that I could cough the fluid out and breathe easily. And fortunately it does not have the narcotic effects so you are not all drugged up and loopy. That thought comforted me as it will make my death a much more pleasant affair.

Meanwhile I'm going to enjoy what ever time I have left. As I emailed to my friend the other day:

I've decided I am just going to live for today and enjoy life to the fullest but I had to go through some soul searching. Chas and Andy think I should not post my latest revelations on my blog about how I brought about my own sickness through self loathing but I think I will because it may help someone.

Even the whole surrender to our guru thing was because I had no real respect or love for myself. The funny thing is that, ever since I told Chas and Andy my realization of how self destructive I've been and how much I've actually hated myself, I feel like a weight has been lifted off me. I've been a real shit most of my life but have put on an act of being a good person. I could fool others but not myself.

I've known that I've had heart, lung and liver diseases for a couple of years now but I was in denial until I ended up in hospital 2 months ago at death's door. The fact is that I should have died a long time ago - first when I had the colostomy and then the stroke and then a heart attack but somehow I survived and so now I count each day as a gift.

BTW it's not like I am placing all the blame for my illness on genetic factors; squealing that I was dealt a bad hand in this game of cards called life. I know that the sins of my youth have played a big part - especially the self-loathing - but I think I'll save that topic for a post all of its own.

Not quite my death bed yet

All your prayers have been cherished and appreciated. I'm having a hard time typing - mostly because my brain is not functioning at 100% yet and this episode seems to have set back whatever progress I had made against the mental and physical weaknesses caused by my stroke 6 years ago and I've lost my left side again and half my brain.

It's been very interesting to see how such total strangers can be so caring. Just proves to me that we aren't really strangers at all but simply members of the same human family who have not met yet.

I don't know why Chas and Andy had to take pics of me in hospital.


















But I liked the view from my window of the very crowded parking lot of the country hospital.
















































It was a real thrill to find that one of the windows could actually be opened. First thing I did was reduce the thermostat from 82F down to 58F and get a fan to cool me off. This post took an hour to do.

Organ recitals

When I first got sick two weeks ago I wrote:

I'm sick. I had to go to the ER yesterday. I'm convinced that politics made me sick to my stomach. I won't go into details. As my mother used to say: "Save the organ recitals for church."

Well, so much for not doing organ recitals since my previous post was pure organ recital. But there's something to be said for not talking about illness - not only because it's usually only interesting for the person doing the recital and totally boring for the audience but also, as my mother insisted, it's not healthy to dwell on sickness.

When my mom was 70 and was widowed for the second time, she started to volunteer at an old folks home. Many of the old folks whom she served were actually younger than her. But she was healthier and happer. She was also the South African Womens' Lawn Bowling champ and active in the WWll vets' association, Members of the Tin Hat or MOTHS, as care-taker of their hall and their caterer. My mother was seldom ill. She claimed that was because her father had taught her never to dwell on illness.

Her father, Gustavus Adolphus Joubert, was also an unusual man, a dairy farmer who was also a vegetarian, a poet, philosopher and school-teacher but also the local post master. I don't know when he discovered Mary Baker Eddy but he became convinced of that her Christian Science was the answer. He never became a member of the Church of Christ Scientist (like everyone in my family he was allergic to churches and preachers) but would read from Eddy's books to his 5 kids.

Only my mom took his teaching seriously. She was not fanatical about it - after all she was a nurse. If anyone in the family became sick, she would call a doctor but quite often, after she had assessed the situation and decided it was not serious she would say: "It's not a big problem. Here take some castor oil or epsom salts or milk of magnesia and you'll be fine. Just tell Jesus to chase that sickness away."

When I was younger I didn't take much notice of her "mind over matter" approach to illness but, after I went to pharmacy school, I became very skeptical about it and for years tolerated and patronized her "quaint notions." Then I became very ill in 1984. Every doctor I went to diagnosed a different disease. I just got sicker and sicker for the next ten years. It didn't help that I was on permanent night-shift for 7 of those ten years. Night-shift did not agree with me. This time the "mind over matter" approach to illness became my last resort.

Chas had become interested in the New England "New Thought" which was started by Phineas Quinby. Quinby had several students one of whom was Mary Baker Eddy. Many of them wanted to call their philosophy Christian Science but Eddy was quite the businesswoman and copyrighted the name. But basically they were all the same: positive thinking, mind over matter, faith healing.

The strain that I was most attracted to has come to be known as Science of Mind. The idea is that you can change the way you think by contemplating your mind, identifying what unexamined almost subconscious negative thought patterns have become bad habits and changing them. Changing them is accomplished not by fighting the negative but by practicing the positive.

I discovered that I had a lot of unexamined negative thought patterns many of them going back all the way to my late teens and early twenties when I was a very frightened kid who was harassed, tailed, phone-tapped, jailed and threatened by the Secret Police for opposing apartheid in South Africa. A recurring nightmare was of when one particularly vicious Zulu officer threatened to throw me out of the window of the fourth floor jail. I buried all this fear and paranoia and kept on trucking but it left ugly negative impressions on my mind.

Then, as I delved into the roots of my fear and negativity, I found more. Subconsciously I had over the years fallen prey to blaming others for my misfortunes. I realized that I had been thinking of myself as a victim for most of my adult life. That was the turning point for me. I saw that blaming others made me even sicker; that thinking of myself as a victim left me powerless and vulnerable. I practiced affirmations of strength, love and forgiveness and slowly turned my life around. But practicing affirmations is only a temporary measure. You can get trapped into "thinking positive" instead of just "being positive."

But all those years of negative thinking had left me physically unhealthy and I got one illness after the other. At least my mysterious illnesses were no longer misdiagnosed. In 1999 I succumbed to diverticulitis, emergency surgery, colostomy etc. In 2003 I had a stroke and in 2004 I had a heart attack. After each episode I recovered and felt better than I had before and I now count them as blessings in disguise.

I also count what I've just been through as a blessing. I had been feeling under the weather for the past few months. No I didn't blame Obama but I did blame it on the awful politics. I had also become very negative about the tenants in the park - seeing them as white trash welfare bums. But, since evicting the last two druggies, I can now say that I have really nice, non-criminal tenants.

Again I was blaming others for my own problems and that was eating away at me. It took a crisis for me to see that because I am a slow learner. In the end the most positive thinking that you can do is feel gratitude. Now it's time to just ignore the nasty politics and sit back and enjoy Christmas.

I didn't always love Christmas mostly because I spent so many of them alone, a stranger in strange countries - usually working because I had no family to be with. But, since Chas and Andy are now my family, I've really gotten to enjoy Christmas. Chas has already put up the outside Christmas lights and tomorrow I'm going to dig out the inside decorations and put up the Christmas tree.

Health and weather update

Thank God our two weeks of global warming is over. Last night a warm front rolled up from California raising the temps from the bone-chilling 10s and 20s into the 40s as it should be at this time of the year. It also brought a delicious soft soaking rain.

What a roller-coaster ride the past two weeks has been. The cold snap made the tenants in the trailer park run out and buy huge electric space heaters. The electric grid is designed to provide only 30 amps per tenant. Suddenly usage shot to nearly 50 amps and blew all the circuits. There were often 3 or 4 outages a night. Between the cold weather and the stress, I got sick.

When I first went to the ER two weeks ago, I had two problems. I had such severe intestinal pain that I was convinced that I had a gallstone trapped in my pancreas - which can be deadly. I was also struggling to breathe. I know I have chronic bronchitis (COPD) which I got from smoking most of my adult life but it has not been a problem till now.

The well-meaning ER doctor took my self-diagnosis at face value, pumped me full of morphine for the pain, gave me two inhalers, told me to contact my own doc, gave me a taxi voucher and sent me home. Morphine does not agree with me so I spent the whole ride home asking the cab driver to pull over so I could vomit.

That was a Monday. I spent the next two days using the inhalers and getting sicker. The morphine was still affecting my mind so I did not think to check what drugs were in the inhalers. My lungs got worse so I called my own doc. He said I had a lung infection and needed IV antibiotics and checked me into the hospital. That night, as I lay in the hospital being given an inhalation treatment, I had a moment of clarity through my drug (Ativan) induced haze: maybe the inhalant was making my breathing problems worse. I couldn' t take a chance. I checked out against medical advice.

It also didn't help that, when I requested phenylephrine nasal spray because the oxygen treatment dries out my nose, they brought me oxymetolazine nasal spray in spite of specifically telling them that I have an adverse reaction to the latter. Both nasal sprays are over the counter meds known as Neo-Synephrine and Afrin respectively. I know that most nurses don't know drugs so I wrote it all down for them. More about oxymetolazine later.

That was a Friday. The Ativan had not yet worn off and I continued using the inhalers. I got sicker and sicker. The problems at the park were also wearing me down. Meantime I had become convinced that one of the inhalers was the real problem but by now I was so sick that I could not think straight.

Finally on Sunday the Ativan wore off and I checked out what inhalers I was using. Sure enough one of them, ipratropium, is known to cause upper respiratory infections (URTIs) in some people - just like oxymetolazine and 38 other drugs. I'm sure you've all seen those adds for allergies and COPD meds which end with a warning that "some side effects may include upper respiratory tract infections." The cure is sometimes worse than the disease. I'd much rather have a few allergy sniffles than get a URTI from oxymetolazine and a bunch of other allergy meds. Buyer beware.

So last Monday I went to see my own doc and told him that the ipratropium was the problem. He agreed that that was a possibility but still figured that I had an underlying lung infection and needed to be hospitalized. I explained that the last thing Chas and Andy need now was for me to be in hospital and asked him to treat me on an outpatient basis. So he loaded me up with oral antibiotics and theophylline to ease my breathing.

I then went to pick up my scripts only to find that they were all out of the one thing I desperately needed: the theophylline without which I could not breathe. I trudged back to my truck and phoned my doc. It was still only 20F with an icy wind out of the Gulf of Alaska. The doc didn't answer the phone so I drove to the medical center to asked for another script to take to another pharmacy.

By this time Chas had been filling in for me at the park for so long that he was behind with farm work so, the next day, Tuesday, I went into the office to relieve him. On the way, I popped into Walmart to pick up some things including phenylephrine nasal drops (Walmart calls it Nasal Four and sells it for just over two bucks. If you need a nasal decongestant use phenylephrine not oxymetolazine which Walmart simply calls Nasal Spray. Check the fine print for the drug names.) While I was waiting in the check-out line, my eye itched and I rubbed it and immediately thought: "Oh shit! I've had my hands all over the dirty shopping cart."

I may not have caught my cold at that time but at the medical center the day before. The joint was crawling with coughing and sneezing people. But, by the time I got home that night I had the sneezes and sniffles. Usually I enjoy being cold but - blame it on my sick state of mind - I didn't notice that the RV that I use as an office was freezing cold - too cold for someone who was sick.

It was downhill from then on. I couldn't sleep lying down by Wednesday because my lungs would fill up with congestion. By Thursday I was barely breathing but I just kept taking the antibiotics and breathing pills and hoping the cold would soon break. It didn't seem like a really nasty bug. But, after another sleepless night, I felt like I was at death's door by Friday. My brain was no longer functioning after two nights of no sleep. I got the phone intending to call Chas and Andy and ask them to take me to the ER but it took me two hours to remember what I was supposed to do. When I finally remembered to call them, they could hear that I was in trouble and came rushing home.

Then followed 6 hours of dithering. They didn't want to push me to go to the ER because they knew I was concerned about getting the wrong treatment again. I struggled to write down everything about my symptoms, drugs and adverse affects. I was determined to get the right treatment this time. I suggested we eat before going but I couldn't eat because I couldn't breathe. I told Chas and Andy that I knew I was not dying because the three times that I had started dying (when my diverticulum burst and caused peritonitis and septic shock, when I had a stroke and when I had a heart attack) my mind had gone into some sort of coasting mode. I felt peaceful and calm and resigned to my fate. What else is there to do if you know you're about to kick the bucket? Supposedly the brain starts kicking out endorphines when it senses that the other organs are dying. But this time I was still in fighting for survival mode.

Eventually we set off to the ER at 9pm armed with two pages of Dos and Don'ts. Fortunately there was a lull in the usual Friday night ER drama and I was treated right away - this time with the drugs that I insisted on as well as IV cortico-steroids. Three hours later I could breathe again and was discharged, came home and ate my rewarmed steak, new potatoes with parsley butter and broccolli. Yes, cortico-steroids like prednisone give one a raging appetite. I haven't stopped eating since I started breathing agin.

As I write this, it all seems so ridiculously egotistical and trivial compared with Right Wing Prof' predicament. Last month he was diagnosed with untreatable lung cancer and is currently blogging his journey towards his immanent death. His faith in God is what is giving him his equanimity and it's very inspiring. I'm not going to link to his blog because it has, in recent weeks, become a very private affair for close friends and family. I will always be grateful to Right Wing Prof for urging me to keep blogging when I first started 5 years ago.

I just came back in from taking the dogs for a walk in the garden. It's a balmy 53F and another perfect day in paradise. Now it's time for coffee and cookies and maybe watch a silly Hallmark Christmas movie. Life is good. I sure hope I have a few years more. I still want to live to 102 and play golf with Bob Hope in Palm Springs. Oh, he's dead. But golf with Clint Eastwood at Pebble Beach sounds good.