Post by kjs on Oct 9, 2018 14:38:03 GMT -6
I am going to start this “witness” story with the clear understanding that “I am still Living It” – so everything has NOT been completed yet. I will also say, this may turn out to be a very long post, because God has been really working in my life this year.
In order to get everyone up to speed with what has been happening this year; I need to go back in time and explain what did happen.
Back in July 2008, I had a heart attack and four mini-strokes. After they ran all their fancy tests and procedures; they determined it was not caused by the “normal” items like clogged arteries (in fact the doctor which checked them said – will not say anyone is perfect – but they were clean as a whistle). What they did learn is that I had a Blood Clot (slightly bigger than a quarter) lodged in the upper left side of the heart. Portions of the clot had been breaking off and causing the strokes and infarctions on the other organs in my body. However, No one could say what caused the Blood Clot to form.
Fast forward two years or so; and all the doctors are still running test after test trying to figure out what caused the Blood Clot. Finally, one of the doctors notice I continued to have a high white blood cell count (test after test) … so I got sent up to Hopkins. At Hopkins, it was discovered I had developed chronic eosinophilic leukemia (CEL). They believed part of the reason for the blood clot stemmed from the leukemia. So They started me on a relatively new drug (at that time) called GLEEVEC. Because it was a “new” drug, there was no generic drug at that time and it was expensive. If I remember correctly, it was running 30K a month – for a one month supply. Later it came down in price to roughly 15K per month
(Side-Note: reason I am so passionate about affordable HealthCare and having pre-existing conditions covered as well as reasonably priced drugs – Hello the Affordable Care Act also know as Obama Care – you try living with ridiculous health care cost – before yelling at me – I know it is not perfect – but the three areas that it did support me – pre-existing, no limit yearly cost, no limit lifetime cost – where wonderful!)
So fast forward another two years and I have been on the drug for over two years and ALL MY COUNTS started registering in the normal range. I said – great that means I am cured! The doctor turns to me and says – with tears in her eyes – sorry, honey – the best you can ever say is that you are in remission.
In 2016/2017 timeframe the Insurance Company comes and states not only to my premiums have to go up (they did every year since 2012) but now they would no longer pay for the Brand Name drug Gleevec but would only cover the generic drug form of Gleevec. I said no problem as long as it keeps me in remission – I will not worry about it.
I was wrong, almost immediately – I started having strange issues. Nothing concrete to prove without a doubt it was the generic drug… but health issues none the less. A really bad chronic Cough (the doctor’s I visited said it was chronic bronchitis, about every three days I would develop chronic diarrhea, about once a week, I was unable to keep food down (whatever I ate came right back up) and the strangest thing of all – is my weight started to balloon upward.
With all this going on, you think someone would have been clued in that it was “something other” than the obvious. But I had so many doctors (and they rarely even shared notes with each other). SO my regular doctor sees my ballooning weight and forces me to diet and exercise more. My cancer doctor continues to see great numbers and wants to keep the treatment going. The heart doctors continue to see the blood clot shrink (the spot is still in heart but they call it scare tissue now) – think I doing well but want me start all these drugs – because of the ballooning weight and they say some cholesterol issues. So I go on even more drugs.
By January 2017, I was getting in pretty bad shape. My weight was close to 280 (except when I was on my diet and I would get it down to 260’s). I had such a bad cough that it was effecting my walking… even a short distance had me breathing so heavily I had to rest. My Aunt died in January 2017 and I went to the funeral and ended up sharing a room with my dad. He was really concerned with my breathing / cough / and weight – and of course blamed me for everything (being out of shape, not caring for self….)
By December 2017, I flew home to spend Christmas with Folks. Walking from the airport terminal to the car – had me gasping for air. My folks insisted taking me to an urgent care unit right then. We went and they ruled it was chronic bronchitis and they sent me home with the folks with a prescription for an inhaler. Two days later (Christmas day in fact) they rushed me back to urgent care…. Gasping for air and no energy. My heart rate was elevated (resting rate around 120). After several tests, it was ruled I had congestive heart failure. At first they were going to put me in the hospital immediately, but I convinced them being placed in hospital for two days (I was flying back home in two days) over the holidays would mean I would not see anyone – like doctors. After getting me to agree to see my heart doctor, when I got back – they let me return back to my parents place.
So I did return home and started seeing multiple doctors again. Oh the joy of multiple doctors’ visits. I even went in as an outpatient several times for various tests. One of the outpatient visits turned into a two day stay because they had trouble bringing me back from anesthesia. So between January 2018 through May 2018 – I had many, many tests performed and a couple of two or three night stays in the hospital. By this time, about every second day – I could not keep food down. Walking up six stairs, had me gasping for air, I would fall asleep watching TV/ reading in seconds, I was cold constantly (this is summer months – in the 80’s at least) and my weight was hitting 290’s.
On May 18, 2018 – a Friday, around 5pm – I asked some friends to take me to the hospital…. I was having trouble breathing, very weak physically. At the ER, they checked my heart rate (this was resting heart rate) was coming in at 180 beats a minute, they immediately put me on drugs and oxygen. I was also checked into the hospital.
A week later I was transferred from the hospital I was admitted to – to another hospital that had a cardiac wing. I was at this new hospital for over three weeks (so in a hospital for over four weeks). My folks came, because things were not looking too good. I had multiple tests run, and though they still could not identify the ultimate cause – the fact was my heart was getting weaker and weaker.
I was on multiple prayer lists (my church, folks two churches (they have a winter church and a summer church), my sister’s church, my niece’s church, and multiple friend’s churches. As I got weaker and weaker, I was given the option of being given an LVAD. A LVAD is basically a pump, that helps circulate a person’s blood. It is usually the step the doctors take before having a heart transplant. I refused, I did not want to live on any medical devices. In fact I said I would rather die, instead of being chained to a device.
So the doctor’s put me on a product that they called a “BAND_AID” – because it helps the heart beat stronger. However, they warned this drug was not a cure and it had to be monitored continuously, and eventually I would either need to go with a transplant – or be released to a hospice center and wait for death.
I went home for four weeks (my folks continued to stay with me) and were trying to help me through this period. I was home under this “treatment band-aid” for about four weeks. In some aspects I was doing a bit better, but in most I was not doing well at all. At the end of four weeks, they ran some more tests. My test results showed my heart rate function below 19%. I basically, was told if the rate fell any further, I would not be given the choice – they would simply place me in a hospice center and wait for death.
Though I still was not really thrilled to face the surgery, I ended up agreeing to have an LVAD installed inside of me. The actual device is called a HeartMate3 – if anyone cares to look it up. To install it requires open heart surgery. So I returned to another four weeks in the hospital.
During the surgery; the surgeon had to do some remarkable stitching and add a mesh material to hold portions of the heart together; because the portion they thought was calcified – in the words of the surgeon – like cutting through wet tissue paper. The surgeon talked to my folks after the surgery (and as they tell it) – After he told them of all the issues – he says – now if you excuse me, I need to go change my pants…. Meaning of course he was very worried about all the “fixes” he was forced to make as well as the insertion of the pump.
Side-Note: Up until my sixth week after surgery – I continue to have vomiting issues. They Think it was because the heart had been so weak – the stomach was not getting enough blood to do its job – so the food started to rot in the stomach and every time I tried to force more in – I simply became sick.
After all the water weight was removed – I was weighing in around 225 – still heavy for my 6’ frame; but as soon as I am cleared for rehab… I hope to get back down under 200.
I am now coming to my twelfth week after surgery, this Thursday (10/11/2018) will be that 12th week and I will be able to drive again (yahoo). I am getting stronger every day. In fact, I returned to work (working from home) the second week in September. So every day I am getting stronger.
Next week, I start another 12 week program (rehab) to rebuild my core strength….. So my folks (who have been here the entire summer) will be returning home – I love them to death, but after being around them 24/7 for the entire summer (trying to do everything for me) – I am ready for a break (and I am sure they are too).
So basically, how this entire process was to work (according to the Doctors – BUT GOD is in control). I was on a LVAD (the pump) to “bridge to transplant” – or I was to get another person’s heart. So in other words, I would have the pump until I could get a heart transplant (up to a decade wait – in some cases).
As I was saying – God is in control….. and this next part is purely speculation – because it only has a 4% chance of occurring – BUT I am looking forward to being within that 4% chance.
After the surgery, it was learned that the “right side of the heart” – was operating normally, and there was no issue with that side of the heart. Everything pointed to the problem being in the left side; though to this day they still cannot say what the “cause” was…. My personal opinion it was the generic Gleevec drug that I was forced to go on – even though I cannot “PROVE IT” – even their own studies say that around 1% may have heart issues.
Will mention at this point, the cancer doctor stopped me from taken the Generic Gleevec drug back in May – as a precaution as this drug might be the actual cause. Great news is I remain in remission as of my September checkup with cancer doctor. So, no longer having chemo-therapy right now!
As I said, have been on multiple pray-chains across the country and I have been getting stronger and better along the way.
So here is the part that has “FLOORED” the doctors and nurses at the LVAD clinic……
As of the last test, my heart capacity (how well it is working) is now up over 40%. They are speculating that with the pump performing most of the work – it gave the left-side a chance to rest some and heal itself….. (I think God performed a miracle)……
Any rate they will continue to test it (most likely monthly) – IF it ever gets back over 55% -- they will consider disconnecting me from all the cords – unfortunately – the heart pump will remain inside – I just will not have a LIVE CORD (known as a drive line) exiting my body on the left side (which requires either live electrical current or batteries).
One of the NPs (who we were told is not very optimistic person) – really feels that I will be one of these unique individuals that will be on the road to recovery!!!!
As I said – I am still in the middle of this story – but I am really believing that soon I will be recovered enough that the pump is no longer hooked up – OR – and the BEST OPTION --- The Rapture has happened and I am with my savior Jesus Christ.
