Prologue: I began keeping a record of my journey through this process when I realized it was not a 'wait and see' event. I am publishing now, because it is becoming real. Today is the culmination of a month --- or so of experience through my eyes. I may not be able to put it all together today, so there may be a continuation. More posts will be added as they happen.
Text: There is a strong possibility I will need to have a pulmonary heart valve replacement in the not too distant future. This came about with the retirement of my 3rd cardiologist and the subsequent annual exam I expected to be meet-and-greet. The doctor I was meeting for the first time took a 10 second listen of my heart, then began 'talk about me' to his assistant. Then he turned his attention back to me and stared into my eyes as he explained that he wanted me have an echo cardiogram and to be seen by an expert who had just joined the practice. There was a disconnect between what he was hearing and what the retired doctor described. All the while, he never seemed to blink. My gut instinct screamed at me he was trying to see if I would cry. I waited until I got to the car.
Another meet-and-greet was set up. It took about a week for the scheduler to contact me for the echo cardiogram appointment. She had a mid day appointment available. I explained that my employer expects me to at work at the agreed upon time. (It seems like a rational request by my employer.) I gave he my parameters for the time and she told me she would get back to me. A week later the second call came to set up the echo cardiogram appointment.
The day of the Echo cardiogram, I re-established a working relationship with the tech who had done a previous test. Toward the end of the exam, the doctor showed up and took over. It seems he is an expert on how to read and how to acquire readings using the echo equipment. He is also willing to do what it takes to get the readings he needs. I was wondering how I going to break up the scar tissue on my ribs from lat Fall's radiation for breast cancer. I am now aware of one method that works quite well. My rib is still sore. But, he got the readings he needed the first time. I am convinced it is much better to work my way through the first time so it will not have to be repeated.
The follow-up prognosis was different than anything else I had ever experienced in a cardiologist's office. The nurse was asking questions I would expect to be asked of a very sick person. The doctor's assistant was asking questions that seemed focused on a very sick person. Finally the doctor came in and began to explain what he thought I already knew. The pulmonary valve had been modified in 1960. (See January 2010 blog in celebration of the 50th anniversary.)
I knew in time the valve may fail. I did not know how it would fail. I do now.
The valve does not close completely. This causes the blood to regurgitate back into the right atrium. The right atrium has to pump harder to compensate for the regurgitation. It becomes larger because it is pumping harder. At some point it cannot become large enough to make up for the blood flowing back into it. It will develop arrhythmia. This will cause me to be in a malaise of thoughts because the heart is not providing sufficient blood to my brain.
This is probably what happened in 2000 when I was driving. I had a short visual black out. I was sleep deprived, recently woken up from a nap to run an errand with the children. I was able to safely pull off the road and out of the way. I waited until the next morning to seek medical help. There were all kinds of tests run over the following weeks. Nothing was found.
In a subsequent annual exam my doctor said my being tired could be 'conditioning'. This translates to more exercise.... until the next bout of endometriosis took me out for a couple days.
In 2007 a temporary stop gap was begun with the use of a maintenance drug to slow down my heart beat enough to prevent the extra beats. I began taking attenolol. Now the drugs are not enough.
There is not much available on the internet concerning pulmonary valve replacement. It is almost an afterthought, if it is mentioned at all. This is for a variety of reasons. One reason is not all the children who had the same surgery I had in 1960 did as well as I have. Another reason is pulmonary valve stenosis is relatively rare. A third reason may be I was born with 'just' pulmonary heart stenosis. Others might have had other problems in addition to the heart valve defect.
Back to today. There is more testing to be done, but his diagnosis was 35 EF in the right ventricle caused by the defective pulmonary valve. I went home, explained it to Larry and let this sink in. Then I and called my friend Karen. She is one of those remarkably bright people who happens to be a nurse. Karen reiterated what I had heard in the doctor's office and sent me links to sites that explained further what happens with heart valves.
http://www.cts.usc.edu/hpg-heartvalvesurgery.html
http://www.youtube.com/watch?v=E0RD6-foBKQ
http://www.webmd.com/heart-disease/heart-valve-repair-or-replacement-for-mitral-valve-regurgitation-or-prolapse
The right ventricle is where blood collects after beating through the body and before it goes to the lungs to re-supply itself with oxygen. The only thing the pulmonary valve has to do is keep the blood from backing up into the right ventricle. It is exposed to 20% of force the valves on the left side of the heart are exposed to because they are responsible for keeping the blood from back flowing from the chambers that shoot the blood throughout the body. This is why I have been able to function on the defective valve for 51 years.
April 16, 2011: We are looking for a second home in my husband's Northern Michigan home town. Larry is concerned he would not be able to support two homes on his income should I not recover from the valve replacement sufficiently to go back to work. But, we are looking so we will be able to make a purchase once I am back to work. That is something that needed to be spelled out in any offer to purchase as something that would void the offer. It is challenging enough to be going through one more medical procedure without listening to everyone's best wishes siting their nephew's, wife's God child's mother-in-law's success at valve replacement. I really did not want to have the conversation with the real estate agent about the contingency, but it is important to Larry. So, while I went around the first house checking out closets and windows Larry talked with the real estate agent. In one of those plans by God we discovered the real estate agent had a heart valve replaced on the left side, in March. He was very forthcoming concerning what he experienced.
There was no need to bank blood because there is very little blood loss with
open heart surgery. So no additional blood was needed from an outside donor.
Good to know. He had a biological valve put in place and the only blood thinner
he is using is aspirin, not Warfarin. Another REALLY good thing. Praise God
for sending someone into my life I did not know I needed to meet.
We put a bid on the house my brother-in-law recommended, for more money than we anticipated spending.
April 17, 2011: There was a counter bid on the house halfway between their asking price and our offer. Larry and I discussed it and decided we could go up a couple thousand dollars more if we put off the closing to Labor day, to save more money to cover the extra cost. He is also asking them to include the appliances that are in place. If they accept our original offer we will close as soon as we are sure I will get well.
April 18, 2011: I looked down at the palms of my hands and they were criss crossed in blue. Not normal for me. It's probably one more marker of the valve deteriorating. I took a walk down to Dewy's crib and back. Walking always helps to get things flowing again, for now. The blue criss crossing is faded back to normal. Of course, the Tamoxifen hot flashes kick in when I am the tiniest bit over heated. Labor and delivery were so much easier than the day to day of being past 50.
The owners of the house would not budge on their price. We will walk away from the offer, save as much as we can by September and see what is on the market Labor day.
April 23, 2011: Thursday was my first yoga class since I found out about the heart valve. The teacher seems a little concerned, but is willing to let me continue. It was a good workout. I felt good when it was over. Friday morning my heart let me know it noticed the workout. That was yesterday, and because today I am back to 'normal' I have to think back to what yesterday was like. I remember being /REALLY TIRED. /The thought of moving from my desk to process forms in Inspection brought me to tears. I had to slowly get my heart rate down after walking through the tunnel into work. I did this by leaning against the cubicle wall and then bending over and laying my head on my desk. I napped during my lunch break. When I returned from my deliveries in Bldg 42 and Inspection it was a repeat of the morning.
Today is Saturday. I was intentional about what I needed to get done. I was also intentional about how I was going to proceed. Slowly and in small blocks of time. Then I would sit for 10 -15 minutes after each chore. Larry vacuumed. I got the kitchen cleaned for Easter dinner tomorrow. Phil is now beginning the prep work for the meal. The goal is to enjoy the Risen Christ tomorrow with no backlash from doing too much today.
April 24 2011: The Lord is Risen! Happy Easter! It is a great day for new beginnings. I just went over my earlier writings and made a few changes. Now, I will go downstairs and put together a dozen cocoanut cupcakes for Easter lunch. It is odd celebrating Easter without the basket of chocolate and jelly beans I am used to. All but Cassie are on the Weight Watchers diet. We need to establish new foods to celebrate. I vote for cocoanut cupcakes. 1 each.
April 29, 2011: Yesterday I had a marathon medical test day set up to take advantage of a vacation day. The easiest test was the fasting blood work. I did not realize how many vials were being drawn until I looked down and lost count.
The hardest test was the hour and a half in the MRI. I had my arms down as the tech Monica put me into the machine. She had prepared me as much as could be up to that point. I was swaddled with the electronics and towels and felt I could not breathe. I definitely could not move. She rolled me out and we had a talk about what I could do to make it through the next 90 minutes. I put my arms above my head so I could move them ever so slightly and wiggle my fingers outside of the machine. She put a dry wash cloth over my eyes so I did not see the top of the machine inches from my face. I began to visualize and talk to myself. Ontonagon, waves, sand, Aurora Borealis, Escanaba, Munising, Pictured Rocks, wolf, wild turkeys… and so it went interspersed by instructions from the computer to breathe in or out and to stop breathing during the picture taking. At one point I was singing nursery rhymes. “With Cassie in the family Happy Happy home. “ I kept count of the shots in a series using the 12 days of Christmas. I got confused after 9 ladies dancing. I even figured out the yardage needed to warp up 14 inches of width on a loom with 15 EPI 45” long. And FINALLY, toward the end I could just lay there concentrating on the breathing until it was over. Given time I guess I can adjust to almost anything.
The treadmill stress test with the echo cardiogram was amazing. Craig explained how I had to get my heart rate somewhere between 140 and 166 beats per minute, then flop onto an exam table so my valve could be examined in stress mode. Bless their sweet hearts…. They got everything they wanted on one flop. I have never claimed to be an athlete.
Somehow my chart for the holter monitor ended up in the wrong slot and I was relegated to the waiting room for 57 minutes while it sat in limbo. It was not as bad as it could have been because a lady started up a conversation with me about the knitting I was working on. Her name is Crystal and she spins. Who’d a thunk I would meet a needle worker in a doctor’s waiting room. The chart was finally discovered and I vented to Roxanne while she looked for the holter monitor (48 hours without a shower… this cannot be good). Then I told her I really needed a hug because it had been a marathon day of testing. Bless her. She saw the basket case I was and helped.
May 9, 2011: Today I went to University Hospital in Madison for a second opinion. The first opinion will be Wednesday May 11. Cassie accompanied me through out. She is able to keep me settled when I am stressed. What a blessing she has been.
Construction in Waukesha County. Construction in Johnson Creek. Construction in Madison 2 blocks from the hospital. On the way home on the ramp from I-90 to I-94 there were barrels blowing across the lanes.
I met the doctor and he went over the results of my April 28th testing. Good news. Yes, the valve should be replaced. No, there appears to be no permanent damage. I was very concerned it was too late to do anything. Whew!!!
The Doctor told me there is experimental surgery to replace a valve through the groin. He suggested the surgeon doing the procedure keep that in mind with this surgery so it can be utilized at a future valve replacement, should one be needed.
He also included Cassie in the discussions. This is important because Cassie, Phil and Larry are the people who will be asked to make decisions for me when I cannot. The more she understands what is going on and why it is happening, the better decisions can be made.
The cardiologist asked me what I weighed when I married. I guessed within 5 pounds. He told me it would be good to lose weight to preserve my joints. I told him I was working the Weight Watchers program and had lost ~ 15 pounds since Christmas. It is so much easier to put it on than take it off. But, it is comming off. He shook my hand for my progress.
Now it a matter of seeing a surgeon and scheduling the surgery through the Wednesday appointment.
May 11, 2011: The Wednesday cardiology doctor’s appointment was put off until Thursday the 12th.
I had another appointment just after that one for my first mammogram since completing radiation for breast cancer. I called to see if I could move up my appointment and was told it was scheduled for two hours earlier than I wrote down. A quick discussion with my supervisor and I left a bit earlier that the original plan.
It was good news. The radiologist said to come back in ONE year. Not, the anticipated 6 months. All was well.
I read the lab results from the April 28th testing for a second time. It was sobering. The 140 to 160 beats per minute on the treadmill were never met with a top out of 127. The pulmonary heart valve might as well not be there because the regurgitation is so severe. It is as if I am functioning on a 3 chamber heart.
May 12, 2011: The decision was made by me before I walked into the doctor’s office not to compensate my life style any longer for the worn out valve. It seems it was the plan all along to give me time to absorb what I needed to be able to move forward with the surgery. The doctor’s assistant is now going into full swing to set up what needs to be done before a heart valve replacement surgery: somewhere around Memorial Day.
There is a heart cauterization to check out the veins and arteries so there will be no surprises. There will be a little more blood work to make sure I am not infected with a SID. I need to begin filling out paperwork for FMAL and short term disability and prepay 2 months worth of health insurance premiums to make sure it is all in order for the 6 – 8 week. There is the dress to put out and a letter of last instructions written should the surgery not go well and I become a 1-2% statistic.
Today’s mail included 2 graduation invitations. It is quite a year. The list is 1 niece from high school, a first cousin once removed from Michigan Tech, a first cousin once removed from home schooled high school and Cassie’s best friend from Marquette University. Yes, I made quil-los for the high schoolers and alum sweatshirts deconstructed for quilts for the college grads.
May 13, 2011: I called the owner of the shop where I am taking a weaving class yesterday when I got home to see if I can re-arrange my weaving time based on my medical appointments. She was willing to let me weave any time the shop was opened. This is a good thing. I signed up for the class before I realized I would need surgery this year. I need to keep 'normal' in my life so I not overwhelmed by what I need to do.
Today more reality. The scheduler for the doctor who does the cauterization called to set me up for the procedure. The normal time this doctor does this test is Wednesdays. She found a 5:30 PM time slot on next Thursday because I am ‘pre-surgery’. The doctor is working into the evening to make sure I go into surgery sooner. It is crunch time and it is scary.
The evening test requires me to spend the night in the hospital for observation. Phil will take me to work on Thursday, then he will pick me up and drop me off at the hospital entrance for the test. That way he will have my car for Friday morning when I will not yet be ready to drive, but ready to be released from the hospital. This way Larry won’t have to take off work to bring me home.
I went to the company nurse and got the forms for short term disability. FAX’d the doctor’s portion to them. It is all in place waiting for a surgery date. That should come as soon as Monday when the surgeon’s nurse contacts me for a meet and greet and subsequent surgery date.
No comments:
Post a Comment