2/22/11 Don't I have enough to deal with?

After coming home last Thursday, the four hour drive was both tiring and welcome, as it meant the 10 day hospital stay was over.  I could get on with the original purpose for going in there in the first place, namely to see if opening my veins would help my underlying condition.

We went to dinner on Friday night after a day of rest, and it felt good to do that, even if it was difficult to walk and move.  10 days of not moving really takes a toll on the human body; it just isn't designed to be motionless.  Saturday I spent the day at home, but got up every once in awhile to walk around the house.  Feeling a little improved from the day before, I was hopeful that I was on the mend.

In the middle of the night sometime Sunday morning, me heart went out of rhythm again, triggering all kinds of panic.  I understand that 40 million people have heart disrhythmias, and I understand that Atrial Fibrillation is common and not life threatening, and I certainly understand that since I am on Coumadin for the time being that a loss of rhythm isn't a risk for clotting.  But anyone who has ever gone through a bout of A-Fib doesn't see it that way.  It isn't normal, and it takes away another measure of one's quality of life.  When the heart produces 75% of its normal cardiac output during A-Fib, walking and talking makes you out of breath.  It's just so unnerving....

Make no mistake here.  My goal isn't to survive life until one day in my 90's I fade to black.  I have a son who is thirteen tomorrow who wants to play catch or volleyball with his dad.  I have need to fly, motorcycle trails to explore, hills to climb, and work to do.  My goal is to eliminate MS from my life, and all of the surrounding challenges that comes with it.  And once I do that, tell everyone I can about it so maybe they can share the same thing.

So when I am trying to recover from a 10 day stint in the hospital that included a cardioversion, my heart going out again isn't just an annoyance to me.  Perhaps I take it too hard, but I freak out and I want answers.  Any setback makes me mad, but when the heart goes, I really get irritated, angry, depressed, and then eventually, logical.  Kathy and I are pretty logical people inherently, so after a few hours of being bummed out and angry, we started once again to think this through.  Kathy and I hunted and hunted for answers and connections.  Here's what we came up with.

I never once had a problem with my heart rhythm until I had the hernia surgery in 2008.  Since having a few bouts of A-Fib, I have had my heart tested, and it's clear there is nothing wrong with it structurally.  My heart is in great shape.  The condition is obviously plumbing or electrical, or some combination.  Recall my hernia surgery came about as a result of me straining to move my bowels during the time before I knew I had MS.  During the past couple of years, I have had the A-fib condition come and go, and it has always resolved itself within a day or so except for the first episode after the hernia and the recent A-Flutter condition I had for the 3 weeks since Januar 28th.  Removing those two episodes, there has always been some kind of digestive correlation, so we started looking there.

There seems to be two underlying types of Atrial Fibrillation: Vagal and Andrenergic, and I seem to fit the classic case of Vagal (Google it).  Vagal A-Fib seems to be caused by an irriration or disruption of the Vagus nerve, which supplies motor controls to all the organs except the adrenal glands, from the neck down to the second segment of the transverse colon.  The vagus also controls a few skeletal muscles, which are listed on various medical sites.  This means that the vagus nerve is responsible for several jobs, such as heart rate, gastrointestinal, peristalsis and sweating, among other movements of the mouth.  Based on my own sensation, this information, a pile of other research of blogs and other people's comments, etc. we came to the conclusion that my paroxysmal A-fib is likely vagal and can be controlled by diet and the corresponding reduction of invasion of the vagal nerve in the intestinal region.

Putting it to the test, I started the Master Cleanse Monday morning.  This diet is the old lemon, syrup and cayenne pepper diet that so many swear by but so many think is a joke.  The one thing not in doubt about the Master Cleanse is it clears a person out within a day or so.  The digestive system ends up with nothing to do, and the body simply ejects all waste.  By 1:00 Monday afternoon, my heart was back in rhythm again, relieving me and Kathy of the instense stress caused by having my heart out.  It picked up my mood, improved my blood flow, improved my ability to walk around, and made me not so short of breath.  Personally I think this is a better option than the medications or a cardiac ablation that so many cardiologists rush for when they see a patient with Atrial Fibrillation.

I doubt this will be my last episode of A-Fib, but I think we learned without a doubt that there is a correlation, and this sense of knowledge leads to control and ion turn eases the anxiety, especially given my overall state of recovery from last week's hospital stay.

I'll stay on the cleanse for a little while, as I can use it to lose some weight and empty my waste out a little more.  Right now as I write this, it's about 9:00 on Tuesday morning, and I feel pretty good.  I am sitting up as I write, I'll be heading into the office in a little while, my headache and temple pain is a little less this morning, so I feel pretty good, all things considered. 

I really hope that my veins stay open and this is the last I have to deal with clotting or scar tissue, so I can turn my attention toward repairing the lesions actually causing the underyling MS condition.  CCSVI is a huge part of it, but I had to just deal with some additional complications, and I once again thank God I live in this country only 4 hours away from a doctor who understands the role veins play in the condition of an MS patient.  Many thanks again to Drs. Michael Arata and Todd Harris at Pacific Interventional for having the knowledge and fortitude to keep workng with me last week.  I know I was a huge disruption in their normal practice and I'm so thankful that they didn't hand me off to someone else who doesn't share this view. 

If my veins stay open, I think we will have the one major ingredient taken care of in this quest.  I felt it back in October, and I want to feel it again.  Since surgery inside my brain is not a viable option yet, the next step is going to be turning toward more focus on the role of blood and oxygenating the vital sections of the brain.

2/15 through 17 - Cardioversion and Going Home

2/15. Yesterday was Valentine's, and I spent it in the hospital while Kathy and Jake were back home. The only flower I was able to give her was a photo of one from the internet via a text message.

Anyway, I woke up today with quite a headache and my left leg still spasms upon wake up. I really am wondering now if I'm going to have any benefit from going through all this, and now today I had to look forward to a cardioversion to get my heart back in rhythm.

Keep in mind that procedures in hospitals always mean empty stomachs, and I had gone a lot of time in the hospital this past week in NPO (no food or drink) status. This day would be no exception. On Tuesday, it would be no breakfast or lunch, as the anesthesiologist requires 8 hours of no food. About 3:30 or so, they came and took me into the cardio room and prepped me. They had to take an ultrasound of my heart to ensure no clots had formed in the atrium, as these could lead to a stroke once the heart is in rhythm and clear the heart into the blood stream.

At 5:02 and 47 seconds pm (I got the ECG printout), I was kicked into regular heartrate and sent back to my room. Cardioversion is apparently quite painful, which is why they put you under for it. I've been told it's like getting kicked in the chest by a mule. The doctor told me I was out for about 20 minutes, and it was actually (and fortunately) not painful at all. The only thing that was awful about it was the numbing medication that they put into the back of my throat to eliminate the gag reflex. The stuff tastes terrible, and the way the doctor administers it made me feel like he was trying to choke and gag me.

One side effect of the cardioversion and possibly all this hospital prodding and such was a huge case of the shivers. For about 3 hours tonight after getting my heart back to proper rhythm, I was shivering almost out of control. The nurse covered me with several blankets and it eventually began to subside. I actually ended up sleeping quite well this night.

Before I went to sleep, something dawned on me. As of this moment, I had managed to get back to where I wanted to be when I checked into the hospital last Tuesday, namely in regular heart and open veins. Of course, I wanted the MS to be gone too, but I'm not so naive to think that was going to happen. I was now on Coumadin and would be for a couple of months afterwards, but after a week of being in the hospital including 4 days in ICU, I was finally back to a position where I could pursue my ongoing quest to rid myself of this disease. Strangely enough, this actually felt like a victory.

2/16. I woke up today with another headache similar to last week, where the temple of my left side hurt down toward my jugular vein on the left side. This kinds of worries me a bit, and I really hope this will subside as I get back to normal life.

At about 3:00 I had another Ultrasound test again to see if the blood flow was still moving in the jugular, which it was. Otherwise, I was observed all day and being checked for my heart rate and my Coumadin levels to be ready for discharge. Looks like I might go home tomorrow.

2/17. Dr. Arata came to see me this morning. Headache again this morning, but not as bad. Same spot. My heart was still regular, the Heparin had been discontinued about 4am, and the Coumadin level was considered therapeutic. He cleared me to go home, as did the cardiologist a little while later. I was released at about 1:00, now 10 days since being admitted.

Kathy drove the 4 hours from Las Vegas to come get me, and we turned around and headed home. I was pretty weak and didn’t feel like doing much, but we did talk on the way home about it all.

Now all I have to do is recover from the 10 days in hospital, be careful not to do anything that might cause bleeding, monitor the Coumadin levels, get an ultrasound in a few weeks to make sure my veins are still open, and see if all this will improve my MS condition. Nothing is free in this world is it?

2/13 and 2/14 - Out of ICU

2/13. Now able to move a little, I spent all day Sunday in the ICU. My veins were open, but I was still in Atrial flutter and I was on Heparin, and also still a real risk of bleeding. The Coumadin was also being brought up to therapeutic levels. My left groin wound (from Wednesday’s procedure) had opened and bled several times, causing all kinds of concerns for the nurses.

Kathy had been with me all week, checking out of and back into hotels as we kept thinking we’d be leaving anytime. We had no idea my vein would keep clotting, and we had no idea that my heart wouldn’t come back into rhythm on its own as it had previously. We decided that Kathy had to get back to Las Vegas to take care of business while I pickled and fermented, so she took the 4 hour drive home on Sunday night, getting home around 9pm. Before she left, she stopped by Verizon and picked me up an iPhone, so I could do a little more than rot my brain watching TV all day.

2/14. About 4:00 today I was transferred out of the ICU to the DOU (Definitive Observation Unit), which is a notch below the ICU. I had been through 5 procedures in 5 days, and in the ICU for 4 days hardly moving while completely alert for about 99% of the time. I managed to walk over to the DOU from the ICU, and other than a few brief moments of standing up and another short walk on Saturday, this was all the exercise and movement I got.

Prior to heading over to the DOU, I spent some time thinking about why my heart was out of proper time. I asked Dr. Arata if it would make sense to have me cardioverted to sinus rhythm, and he agreed it would be a good idea. I had a cardiologist assigned to me since I arrived because of the atrial flutter, so Dr. Arata coordinated this with the cardiologist. We got the cardioversion scheduled for the following day.

One other thing I should note here is the progress of my MS symptoms. Dr. Arata and others kept asking me about how my legs were among other issues, and I can honestly say I have no idea. Laying in a hospital bed for this length of time with minimal movement and abnormal bodily function was really no way to tell how I was doing. The one thing I can report though was my head felt clearer - a bit less cog fog than previously.

2/11 and 2/12 - Alert in the ICU

2/11. I was back in the Cath lab at 7:30 this morning to see how well the TPA was working. After all the normal prep (NPO - no food again) and waiting, we found the clot had reduced about 50%, so Dr. Arata ordered me back to the ICU to soak it up some more. This was good news even though I was still confined to a movement free life for a little while. The original plan was for him to come back later in the evening to check it again, but the Cath Lab was inundated on Friday night with several heart attack calls. I learned the nurses refer to these as "Amy" calls, which is slang for AMI (Acute Myocardial Infarction), and soon it was too late to do procedure. It would be scheduled for Saturday. I wasn’t really that disappointed as I knew I wasn’t going to be leaving the hospital anyway, and really, those people needed the lab more than I did at that point. For all I was going through, I couldn’t be selfish about someone having facilities available to save their life.

One interesting side effect of clearing out my veins was my head cleared out. All the nurses thought I was coming down with a cold as all of the dry sneezes I had been having once again became wet and productive. The same thing happened back in October when my veins were opened then. Dry sneezes which I had several times a day turned into real sneezes and all kinds of mucus began to drain from my head. I felt fine, just needed lots of tissues to blow my nose and a big cup to spit into. I don’t really know the ramifications of this or the correlation. I just think it is strangely coincidental that opening my veins would also open the sinuses somehow and clear out a lot of excess mucus.

2/12. I didn’t sleep at all again last night. Not moving one’s body when alert is a difficult thing to do. I was quite miserable honestly, and I broke down a bit as I learned continually of bad news after more bad news. Remember, my heart has been in atrial flutter since January 28th, which was the day after my previous surgery attempt to clear out the veins and I was put onto the Lovenox. The nurses tried to reassure me that 40 million people in the US have atrial disrhythmias, but that didn’t make it any easier. I was becoming quite distraught about this whole thing by Saturday morning, and I found myself pondering about what a series of events this had become. Just a few years ago I was a healthy strong capable person, and now here I am, in the Intensive Care Unit in a hopsital 300 miles from home about to enter my 5th attempt to clear a clog in my veins, just so I maybe can improve my quality of life and not end up being one of the many with MS who end up so disabled.

Dr. Arata was busy today, so Dr. Harris removed my infusion catheter at around 3:00, now 45 hours since it had been installed. I got to see the blood flow on the screen while in the lab and I got the CD’s of it as well. After the procedure in which Dr. Harris told me it looked good. I could see it myself that the blood flow was so much improved. I was so relieved, and I ended up breaking down again. I went back to the ICU for further observation and the TPA was stopped, but the Coumadin and Heparin were now being built up.

I guess at this point I get to interject the funniest part of this week. On Saturday night, after being in the Cath Lab and finding out about my now cleared veins and being relieved of the infusion catheter, I begged my nurse to help me relieve myself. I hadn’t gone since Tuesday morning before I checked in, now 5 days ago. The orders were Milk of Magnesia every 6 hours until BM, but since my neurogenic bowel doesn’t work properly, I knew it wasn’t going to help. Also, the MOM was discontinued several times as I went NPO while waiting for each of these procedures. Thus, I was developing quite a stockpile in my bowel. Finally on Saturday night, they allowed the nurse to give me a suppository of Dulcolax. I was in bed still, so the dignity of it all went out the window. The nurse brought a bedpan, laid out the protective disposable linens, and told me to call when ready.

After about 20 minutes, I felt some action, and soon the bedpan was receiving its contents. And receiving, and receiving and receiving. I called the nurse when I thought I was done, and we began to wipe everything up. The relief I felt was simply unbelievable. Once all was clean and under control, I told the nurse I can’t feel my bowels (one of the effects of MS for me) so I wanted to know how much there was so I could determine if I was going to have an accident in the night. The nurse looked at me, and with a hand motion over a new empty bedpan and a bit of a broken English accent, said, “Full, completely full………the pan is completely full. No more room.” Sorry, but I giggled over this for awhile.

2/9 and 2/10 - More Complications and the ICU

2/9. Dr. Arata came by fairly early this morning to see me in the hospital bed and told me how the procedure went. He said it was cleared and all went well, with the blood flow looking good. He confirmed they did indeed do the flossing action to break up the scar tissue, and that he and Dr. Harris were able to work through it together quite well. He told me they would do an ultrasound of the area later in the morning to establish a baseline to compare against in a few weeks, and I could then go home.

About an hour later, the ultrasound tech came by and began the relatively simple test. We found it had clotted up overnight despite the use of the blood thinner Lovenox that I had been on for 2 weeks and also had been on overnight. I guess for some reason my body doesn’t thin with this particular medication.

Dr. Arata was called with the test results, and it was time to another proedure. I went off food again for the day, and I was scheduled to go in later in the afternoon to re-clear the now clotted vein. So to summarize up to this point, my vein was narrowed, opened, clogged with scar tissue, opened, and now clotted. It was pretty clear this vein wasn't going to open without a fight.

At about 5:30, Dr. Harris arrived to do the procedure, where he rooted out the clot. The procedure was the same as the day before, with the exception that he went in the left groin and he cleared out a blood clot as opposed to a build up of scar tissue. He didn't do the floss trick this time; I felt what seemed to be a long drill with sandpaper running up into my jugular. Once again it was clear as I returned to the room.

2/10. I didn’t sleep at all last night, but arose in a bit of a groggy state to talk to another Ultrasound tech who checked me again for blood flow. Once again, my vein clotted up overnight, much to my and Dr. Arata’s disappointment. OK, again back to the NPO (no food or drink) and into the Cath lab at about 5:30. This time, Dr. Arata installed an infusion catheter from my right groin leading up to my left jugular. An infusion catheter is a bit like a garden soaker hose that will distribute medication directly to the area it’s needed. The medication is TPA (Tissue Plasminogen Activator), which is a blood thinner that not only prevents clots, but actually melts clots away. TPA is usually used in stroke patients to help melt clots. It's a powerful medication, but the bad news was it has to be administered in the infusion catheter which required I keep my leg straight and not lift my head. Furthermore, TPA is so powerful and the risk of bleeding so profuse that I had to be placed into the ICU and not move for what ended up being 45 hours.

Almost two days not moving was interesting. I have to admit, this simple procedure of opening my veins to allow the healing environment for MS is beginning to feel like more than a simple procedure. What the heck is next?

2/9/11 Surgery #3

We got the latest surgery scheduled for 2/8/11 after several discussions and emails with Dr. Arata’s office and the hospital. Dr. Arata wanted me to go to the Fountain Valley Hospital which is fairly close to their Costa Mesa office. Given I now had an FDA approved billable medical condition (jugular thrombosis), insurance kicked in subject to deductibles and co-pays. Kathy and I left our home in Las Vegas on Monday 1/7 and drove the four hours from Las Vegas, checking into the Ayers Hotel again. Given our procedure was scheduled for the following afternoon and the food restriction didn’t begin until midnight, we enjoyed a nice dinner at the Yardhouse in the Triangle Square mall (located just past the end of Highway 55 as it turns into regular streets in Costa Mesa).

All the nervous anticipation kicked in again, and while we’re pretty good at relaxing and enjoying our life, it was definitely hard to keep the emotions in check. After all, this would be the third attempt to open my left jugular vein in hopes that I could finally begin the road to healing my underlying condition. As I have said many times, CCSVI procedures don’t fix MS; rather they give one the chance to heal once the environment is there.

Anyway, we arrived at the hospital at about noon on 2/8, and went through the obligatory paperwork, dressing into the gown and getting the IV started. I was scheduled to go to the Cath Lab, which is the same operating room they use for all kinds of heart emergencies. It is also a room that looks very similar to the surgery centers I was now becoming so familiar with. Prep was normal in the room, and soon Dr. Arata next to me at the table talking with me about the procedure. There was still no reason given as to why I had built up so much scar tissue, but then again, there was no reason given on why the sky is blue. Sedation was administered, and the procedure began. I hoped for the best.

As with the last surgery on the 27th, in a sedated state I began to realize there were real challenges with this left jugular, Although Dr. Arata was able to get the catheter into and through my left jugular, something was difficult and I again passed out (vaso vagel) from the sheer pain. I came back around in a few seconds, but I was still quite groggy and in quite a bit of pain. I was able to discern, however, that there were two doctors in the room now, not just Dr. Arata. I could tell because of the dialogue of discussion instead of instruction that I normally heard in the room. I realized that Dr. Todd Harris, another of the CCSVI specialists at Pacific Interventionalists, had come to assist and they were working through it together.

They had one of the entry points at my neck and the other in the right groin, and they were breaking up the scar tissue by using a kind of flossing motion out of the two exit points, scraping the scar tissue build up out of the vein. They also installed a stent in the left jugular. I’m glad I was sedated and barely realized what was happening because thinking about this now makes me queasy. Regardless, after about 2 ½ hours, they were done and the scar tissue had been removed, and my left jugular was once again flowing. Note throughout all of this the right vein and azygos all were flowing nicely.

One of the reasons for doing this in the hospital was the possibility that I might have to be admitted in-patient, and sure enough, this was the case. As I went back to the hospital room, I was extremely groggy, in quite a bit of pain, and my head hurt on the left side from the temple down in front of my ear, and to the area just above the clot. It almost felt like the catheter had gone too far up and into my brain, and it hurt so much. I think the pain came from the circulation now taking place after being completely occluded for 2 weeks.

I remember thinking as Kathy came back to my bedside, it’s done, and I can get back on with it.

2/3/11 Ughhh, waiting is tough

As I noted last week, my second CCSVI surgery was halted because of the inability to enter the catheter into my left jugular vein with the tools and equipment available in the outpatient surgery center. We are currently awaiting scheduling of the third surgery to be done at the hospital. I am currently injecting the prescribed anticoagulant medication twice a day while I await notice.

I have paroxysmal atrial fibrillation that began about 2 years ago. I first got the A-fib condition in 2008 following a hernia operation. As a side note, the hernia arose from straining to evacuate bowel waste because of MS. I was getting the a-fib condition about once every 2 weeks for a day or so initially, and then it tapered way off to once every month or 2. During the summer and fall of 2010, it seemed the frequency had increased to about once a week, and was being brought on by strenuous exercise, which in my case is swimming for 90 minutes 3-5 times a week with a swim team. It didn’t go out of rhythm during the exercise; rather it was happening as the heart rate came down in the 2-3 hours following.

There are a number of reasons for a-fib condition, and I believe one of them is a loss of atrial prime as a result of venous hypertension. This seemed to be confirmed when my 10/26 surgery eliminated it for at least 6-8 weeks. I didn’t have a single episode following my CCSVI surgery until I started noticing my symptoms returning, even when I swam. I was exercising frequently and things were definitely on the right track. I think my blog clearly reflected this. When my MS/CCSVI symptoms returned, my heart began to go in and out again, and when I swam it was worse. This prompted my return visit to Dr. Arata last week.

My heart went out of rhythm this past Sunday and is still out today, making this the longest a-fib episode I’ve had yet. Since my surgery last week, I am waking up now with much larger headaches than before and a general feeling of being worn out for a good hour or so after I get up. After I shower my legs are wobbly for an hour or so and my heartrate is elevated and out of rhythm. It’s taking until 10 or 11 am to feel like I can get moving, after which I spend the day working somewhat normally. I am 100% certain this tough week is a relationship with my left jugular being almost totally occluded, and I am pretty certain I have some kind of cause/effect relationship going on in my body between MS, CCSVI, venous hypertension, a-fib urinary issues, bowel retention, and the inability to properly absorb water.

Right now I am quite concerned about the arrhythmia as I usually am able to get it back to sinus rhythm in a day or so, especially if I take some aspirin. I don’t know if I can or should take aspirin while on these anticoagulants, and I am also unable to really do any exercise as this exacerbates it, so I feel like I am in a bit of a downward spiral.

I don’t think I am in an emergency situation, but I am not sure what to do while I await the next surgery. Should get some answers here shortly, but waiting is not something I've ever been much good at.