Walt's Journey

Tomorrow I have an appointment in Ann Arbor with the Cardiovascular Medicine group to go over my blood pressure requirements.

The last few days have been “Ok”. The fatigue is still there, and the pain seems to have picked back up a bit. I think the difference is that I have been able to get use to the pain a little bit more.

I was able to make it out to church on Saturday night for the Christmas program, as well as Sunday morning for church, Sunday school, and out for lunch. It felt good to get out a little bit.

My cardiologist said that I could slowly start riding my bike as long as I take it easy. My bike is set up on the indoor trainer and ready to go. I hope to get on it for the first time in the next day or two.

Today was my appointment with my Electrophysiologist. I was hoping for some answers and clarity and I was not disappointed. The first thing the doctor said when she walked into the room was “I know a lot about you even though I haven’t met you”.  She mentioned that my surgeon, Dr. Patel, had come to them asking if they could see me as soon as possible.

She explained everything very well, and I came loaded with many questions. She explained that with the extreme surgery that I had, it is not uncommon to develop PVC’s. The trauma from both the dissection and the surgery can cause your heart to be knocked off course. It is possible for the PVC’s to slowly get better and possibly stop altogether on their own as everything continues to heal. What they want to see is for the PVC’s to be less than 10% of your beats. Once the PVC’s get to 10% or greater, than measures will need to be taken to correct the problem. The worse case scenario would be a “Heart Ablation”. The first EKG that they saw from me a few weeks ago showed an extra heart beat every other beat. The EKG that they took today rarely showed an extra heart beat. This is consistent with my experience of the PVC’s being random. I have an appointment in February to come in and be fitted with another Holter heart monitor which I will wear for a full 48 hours. They will check the results and see if the PVC’s are getting any better. I was told that the PVC’s, under my circumstances, can last three to six months. I will continue to be monitored during this period. A course of action, if any, will be decided based upon the results of the testing that will take place over the course of the next few months.

I was given a very accurate explanation of the seriousness of my aneurysm. The doctor said it was a very large aneurysm and that I was extremely fortunate. It was described to me as an onion and the many layers that the onion has. When my aorta dissected, it was bad enough to fill many of these layers of my aorta, and it bulged just to the point of bursting. Almost the entire arch of my aorta was replaced with the Dacron graft. Even though things are difficult, I realize that I have a lot to be thankful for.

The PVC’s, pain and fatigue continue to be very difficult to deal with on a daily basis, but I am doing my best to keep my head up.

My normal routine is to take two extra strength Tylenol rapid release gels with my morning medications, and then a Norco pain medication a little bit before bed in the evening. This morning I decided to attempt to go without pain medications for today and see if I am able to make it. I am not planning on allowing myself to become miserable, but I should be able to tolerate some discomfort so that I do not become too dependent on the pain medications. I am about to go to bed for the evening, and I am in “ok” shape.

I received some initial information from my cardiologist concerning the Echo Gram that I had done. The initial results showed “Mild” Aortic Insufficiency. Apparently this is decent news. I make a trip to Ann Arbor in February for chest X-Rays and a Cat Scan. Until then, I was told that I could do about thirty minutes a day of mild exercises. I bought a new bike just before this all happened. I have it all set up on the indoor trainer, and am looking forward to getting on it.

The last couple of days have been rough. My fatigue has been horrible, and it has been rough mentally. Tomorrow afternoon I go to Ann Arbor to meet with the Electrophysiologist. I am hoping for some answers about my irregular heart beat.

The title of this blog is something that I am having a really hard time grabbing onto the fact that this is something that happened to me. There are moments that I just really wonder how it could be true. It is something that happened so quickly, and without warning. Just having these words roll off of my lips still seems very strange to me.

I have not had any abnormal issues since my cardiologist appointment the day before Thanksgiving. My PVC’s are consistent, and I am still battling extreme fatigue constantly. My next appointment is this coming Thursday in Ann Arbor. I will be meeting with the Electrophysiologist. I am praying that I will get some answers.

My pain is slowly getting better. The pain is still always there, but I do feel like I am making progress to some extent. I am looking forward to not fearing some of the things we take for granted like sneezing and coughing.

My blood pressure has went the other way, and tends to be on the lower side the last several days. It is not in danger range, and I think it may be because of the fact that I was able to get a few answers last week, and am able to relax a little bit.

This morning I went in and visited with the person that will be my cardiologist. I am so thankful to be recommend to a cardiologist at U of M, and to be taken care of by the best. She also specializes in Aorta issues. God is good.

I had a lot of questions, and got a much clearer understanding of everything going on. I learned more about my dissection, and what to expect going forward. An “Acute Type A” dissection is a dissection in the arch of the Aorta near the heart, and is usually fatal. A “Type B” dissection is one that is more in the trunk of the Aorta, and often times can be treated with medications and close monitoring. I had both an Acute Type A and Type B. All of my arch and a big portion of my trunk dissected. Dr. Patel replaced most of my arch with a Dacron patch, and the rest of the Aorta is still dissected. I will be closely monitored going forward. If there are any issues with the remaining dissection, then they may have to go back in and patch the rest of the dissection.

My PVC’s are getting worse. I have an appointment with an Electrophysiologist on December 2nd. I am sure a course of action will be determined at this time. It appears that I may need a procedure where they will go up into my heart and zap the area that is causing the irregularity.

I asked about my fatigue, and this is something that is expected for both the surgery that I went through as well as the medications I am on. My cardiologist said that this could last for several months, and that I need to continue to get as much rest as possible.

At this point, I am letting everything sink in.

The last several days have been rough, and I am thankful for the friends that have been there for me. I have had the privilege of eating out a couple of times recently with a couple of friends that I have been able to look in the face and share my heart. I have also received some timely phone calls and text messages. God always knows when I need some extra encouragement. This experience has made me sit back and realize how thankful I am to have that circle of friends that keep reaching out. This would have been much more difficult without prayer, family and friends.

I have my cardiologist appointment bright and early tomorrow morning in Ann Arbor. This will be one of the most important appointments thus far. I have a lot of questions to ask and look forward to getting some facts to what I have to look forward to.

I still deal with daily fatigue and it makes everything a little tougher. My blood pressure has been good since last Friday, so I am thankful for that.

This past Wednesday through Friday has been very difficult. Starting on Wednesday, my blood pressure was high, and stayed high. The first five weeks, with a couple of exceptions, it has been near perfect, then all of a sudden, on Wednesday afternoon, it started to go high. Yesterday I had my Echo Cardiogram. Lying on my side without my shirt on while some lady rolls a cold roller around on my sore chest was not something I enjoyed very much. The test was requested by the electrophysiologist that I have an appointment with in December, so I do not know what the results are just yet. After the test was finished, they took my blood pressure and it was really high. The reading was about the same level it was before I left to go to the test. They were concerned, and sent me over to my family doctor. My doctor decided to double my blood pressure medication. I put in a call to Ann Arbor to confirm that this was ok. By Friday evening my blood pressure had come down to where it was supposed to, and it has stayed at a good level thus far, and I have not had to take the extra dose of medication. For an Aorta surgery like the one that I had, keeping my blood pressure at low levels consistently is the difference between life and death. I cannot have any expansion on my Aorta. I will have to check my pressure daily as well as being on medication for the rest of my life.

From what I have learned from my surgeon, along with some research and through reading some stories from dissection survivors, I have learned that there are very few positives to grasp onto. I am going to ask a lot of questions from my Cardiologist next week, and trust the Lord to take care of me. The information out there is discouraging.

I have had trouble getting what I call the “Big Three” to line up. The big three being 1) Pain 2) PVC’s 3) Blood Pressure. I can often have two of these three working decently, but then the other one will cause the day to be over whelming. The last 72 hours it has been two or three out of three out of sync. The last three days have mentally worn me down. I am hoping to get some good rest this weekend.

I do admit it. I need a lot of encouragement. One way that I have been encouraged through this ordeal has been by many text messages from friends. Today, I received a text message from a friend from church that stated that he was praying for my pain management. He also said that he felt led to throw out Romans 5:10 to me. I slowly read through the verse. At first, I didn’t understand how it fit, then I cracked opened a New Testament Commentary that I had ordered and received a couple days ago. There was a portion at the end of the commentary that stated this – “Since God has reconciled godless enemies to Himself, they should enjoy that peace with Him”. There is that word “Peace”. Anyway, it was a a well timed text message that had me digging a little bit which caused me to be encouraged.

As of yesterday, I started picking up the kids from school. They have been staying in latch key since my surgery. I appreciate being able to get back into one of our routines. I believe the routines will slowly come one by one as I get stronger, but this is one small step.

I have still been extremely fatigued all of the time. I believe that it is a combination of recovery and medication. When I visit my cardiologist next week, I am going to bring it up, and see if there is anything we can do to help me not be so fatigued.

Today did seem like a small step forward. Thank you all for praying.

Staying home the entire weekend and resting as much as possible helped. Today my pain was manageable, and although I still get fatigued easily, I seem to have lasted a little bit longer today.

I am totally off of my pain medication from the hospital, and am relying on Tylenol Extra Strength at this point. The first couple of days using the Tylenol did not help relieve my pain at all, and I was miserable. Today, however, was much more tolerant. I did get some tickles in my throat which caused me to cough a couple of times, and that doubles me over in pain for a little while.

I was sitting nearly upright to sleep up until last night. I put a couple of pillows together and was able to lay on those without too much discomfort. It did stretch my incision a bit to lay down that much, but it made sleeping a bit better.

My PVC’s acted up more than normal today, especially this evening. I am trying hard to use distractions to calm them.

Overall I am uncomfortable, but today has been the better day. I am hoping that this is a sign that improvements are coming.

It was not a good night last night. My “Normal” pain woke me up three times, and the PVC’s woke me up another time. I am looking forward to another full day of rest and relaxation. The daily pain has become discouraging at times. The pain has obviously gotten better since the day I came home, but just to be in overall pain all day every day for nearly six weeks is really wearing on me. I am trusting God and everyone’s prayers for strength.