As with most of us, Bill Lynch plays many roles. He is a father of five (33, 30, 28, 5 and 19 months), a husband, a teacher, an administrator, a coach. He is the kind of father whose grown children send him those beautifully gushy cards for his birthday and father's day with their own beautifully gushy sentiments written inside. To his younger children, "Daddy's home!" are there two favorite words. He is the kind of husband who always remembers the big and not so big things that make a marriage work. He is the kind of teacher, administrator and coach who gets stopped by former students, athletes or their parents, who just want to let him know what a difference he has made in their, or their child's life. It's the little things, I think, that make a man great. And Bill Lynch is a great man.
14 August 2002
On February 24, 2002, my husband came into the kitchen and told me he was feeling something in his chest he had never felt before. Not a sharp pain, but more of a severe, gaseous heartburn right along the center of his chest. I gave him an aspirin and called Urgent Care. He described his symptoms to them, and as a precaution they told him to go to the emergency room. We had a choice of two hospitals in the area and chose the smaller, quieter one instead of the larger, regional one.
He was quickly seen - writing 'chest pains' on the intake form gets you in right away - but they could not figure out what was causing the pain. His blood pressure was low 100/50 and his pulse was in the 40's. Bill was 6'4" and 250 pounds - those seemed like awfully low numbers to me, but they didn't phase the nurses. They gave him some nitroglycerin which took care of the pain and let the doctors know that something was wrong with his heart.
After 5 hours in the emergency room, they told us they had to transfer Bill to Regions Hospital (the one we bypassed) because they did not have a cardiac bed available for him. At Regions, he still felt weak, with minor heartburn, but no one knew why. He was scheduled for a stress test in the morning.
An hour before his stress test, a doctor suggested doing an echocardiogram, "Just to see..." Well, that test saved Bill's life. The echo showed a tear in Bill's ascending aorta and a malfunctioning heart valve. If he had had the stress test, he very well could have died.
The next two hours were a blur, cardiologists coming in and out trying to decide what to do. He then had a trans esophageal ultrasound to get a better look at his heart. Then almost immediately he was taken in to surgery. I was in shock. Luckily, there was a nurse practitioner who followed the cardiac team around to explain things to me in layman's terms. The surgery was said to take 4 hours and that I could see Bill at 8pm.
I made calls to his family, my family, and our bosses. Family and friends came to the hospital to wait with me. My mother picked up our two kids (5yrs & 14 months) and kept them at home. Eight o'clock came and went. At 8:30 a nurse came out to tell us they were half way finished. My first thought was, "Well, what the hell have you been doing in there?" But I just nodded and thanked her for reporting out.
The nurse came out many times that night filling us in on how poorly the surgery was going - they were having a hard time getting Bill off the heart/lung machine and that this was the time when most patients die. Thanks a lot! We told her not to come out again until his heart was beating on its own. Two hours later - we got that good news. It was another 2 hours until the head surgeon came out to tell us how everything went. Bill would be "a very, very sick guy. This will definitely change his life." It would be another 3 hours before he made it into the SICU. I saw him briefly, headed home (it was 6am) got my daughter up for school, and drove her there.
I went to my school ( I'm a teacher) to tell my principal I wouldn't be in for a few days when the hospital called my school to say Bill was brought back in to surgery due to uncontrolled bleeding. During that surgery, they reopened his chest and removed two clots and performed a fasciotomy on his right leg to relieve the compartment syndrome that had developed.
As I look back now, everything seems to run together. Bill was kept in a propophol coma for a week and a half. During that time, burn doctors performed a debriement on his leg to remove some calf muscles that had died due to lack of blood flow during the initial operation. He was also put on dialysis due to a high creatinine number (6). When he woke up, he had no idea what had happened - and couldn't communicate due to the respirator. It was not a fun time. But the nurses were great and were proactive in working him off the respirator over the next two days.
After two and a half weeks, he was transferred to the Telemetry floor where he underwent daily dialysis. After 4 weeks, he had an aggressive renal doctor who decided to push his kidneys into action and take a break from dialysis. It worked! No problems in that area any more.
As for his leg, for 5 more weeks, the outer wounds were open and hooked up to this vacuum sponge pump thing that was keeping the area moist with blood flow and hopefully stopping any more decomposition. He was on complete bedrest and seemed to be withering away before my eyes. Four additional leg operations left him with no muscle on the right side of his shin bone, a skin graft with skin from his upper thigh to cover the wound, foot drop and an AFO to help him walk.
After 6 weeks, he got the okay to use his arms for support and he got out of bed somewhat on his own for the first time. He was moved to the rehab floor and 3 weeks later discharged from the hospital. I know there is a lot of stuff I'm forgetting, but I don't want to bore you too much!
He came home using a walker and we were told he would never walk unassisted. After a month, he was down to one crutch and after two months - walking unassisted! He continued with physical and occupational therapy for 3 months after discharge, and now only goes to cardiac therapy.
As many of you I'm sure know, a recovery from this illness is not only physical, but mental and emotional as well. Bill is continuing to suffer through depression (although Remeron has helped with that). He has not returned to his job as a school administrator - he simply does not have the physical and mental stamina to keep up as of yet.
He is going through another round of CT Scans and doctor visits to make sure everything is still healthy inside. But this is where it is most frustrating. No one wants to give us an answer as to what his limits/restrictions are. His GP tells him he shouldn't be lifting "too much", but should ask his cardiologist. His cardiologist says to talk to his rehab nurses, who say no restrictions for bypass patients after 6 weeks. But he's not your typical bypass patient. I think that is what bothers Bill the most - it's not like he had a heart attack and now needs to exercise, change his diet and take meds and know he can keep it from happening again. There seems to be no way of knowing if we are doing anything right/wrong.
I am so thankful for this site - it is the only one I have found on dissections that offers more than a strict medical definition. It's like the medical profession doesn't acknowledge there are survivors and we need help! If there is anyone who can offer some insight into limits/restrictions for an aortic dissection survivor, I would appreciate the feedback.
Good luck and good health to you all.
Update: 28 Feb 2003
As we came upon the one year anniversary of Bill's first surgery, he had been having some dizziness and his blood pressure was pretty high (180/92). His docs played with his medication and scheduled his 6 month CT scan. Otherwise, he feels he is finally back to his old self.
The day after the scan, his cardiologist's office called and told us Bill should come in the next day - no other information. So we go the next day, and instead of his cardiologist, in walks his surgeon. We knew immediately that the news was not good.
It seems Bill's dissection runs all the way through his abdomen. Last year, they fixed the ascending aorta and aortic valve. Now, his descending aorta has developed a 5.9cm aneurysm that's about 7-8 inches long. He strongly recommended surgery and we agreed. It is scheduled for March 4.
It was so much easier (ha!) going through this the first time because we were so naïve. Now, we know too much. They are going through his side - an abdominal thoraco approach. It sounds pretty gruesome. He told us there is a 10-20% chance of paralysis due to the location of arteries that feed the spinal column. He also told us the surgery should only last 6 hours.
This was quite a shock. Things had been going so well.
So Tuesday, February 25 rolls around - the one year anniversary of his original surgery - and I'm making dinner. He leaves the kitchen to go into the dining room and passes out. He hit the floor like a ton of bricks right in front of our 6 year old. He started shaking and his eyes were rolled up and he was making weird sounds. I called 911 and relayed what had happened.. As I talked on the phone, kneeling by Bill, Bill opens his eyes and says, "I can hear you." It was the weirdest thing. While we waited for the ambulance, our 6 year old hid under our desk crying, our 2 year old kept yelling, "Get up Daddy!" and I thought for sure Bill's aneurysm had burst or he had had a stroke or something.
Make a long story short, he is okay. The hospital kept him overnight for two days. CT's show that nothing has changed and he is still scheduled for surgery on Tuesday, but now they want him in on Monday afternoon so they can drain his back(?). I don't get what that is for. Anyway, they have no idea why he fainted, but has been told to be a couch potato until the surgery.
Also, a cardiologist laughed when we told him the surgeon said 6 hours for the surgery. He said, "Expect more like 12." We were not happy to hear this either. They had a very difficult time weaning him off the machine last time.
Our daughter is having a hard time with this. She has never really talked to us about how Bill's last hospital stint effected her. She's had stomach cramps and diarrhea since Tuesday, and won't talk about her worries. I don't know what to do to help her.
If there is anyone out there who also had an aneurysm like this, I'd appreciate any light you can shed on this.
Thanks so much for being there,
Update: 20 Sep 2003
I'd like to thank all who responded to my last update in February. Your input helped us get our minds around what this operation was going to be like. But, things didn't quite go as we had planned.
A short recap- Bill was set for surgery to repair the aneurysm on his descending aorta just below the arch, which had grown to 5.9cm and was about 7-8 inches long. We were ready. He had to check in the afternoon before for some pre-op stuff, so we get to the hospital around 3pm. Between 3 and 5 pm, we were told 4 different stories by nurses as to what was to happen that night. First, they were going to x-ray him- then they weren't, then they did. Then, he was supposed to fast - then he wasn't. Another nurse admitted she didn't know why he had to come in the night before. Finally, a cardiac nurse practitioner we had worked with before told us that they were going to put some kind of tube in Bill's spine and that he'd have to lay flat all night and that this tube was going in at 8pm. She later came back and said it was going in within the next 20 minutes. Twenty minutes later, she came back to tell us that the tube insertion was postponed because the surgeon was having second thoughts about the surgery and wanted to talk to us first. So much for our mental preparedness.
Dr. Bolman, our surgeon, arrives and is indeed having second thoughts. His concern was with the aortic arch. Bill's ascending aorta had been repaired, and with this surgery, his descending aorta would be repaired, leaving a weak arch to keep pace. He felt the arch would eventually 'blow' (I cringed), and it would be extremely difficult to get into the area to repair it when it does due to scar tissue on both ends of the arch and on Bill's chest from the first operation. So he was thinking of repairing the arch this time around instead of the aneurysm. We were a little concerned about putting off the aneurysm surgery because two weeks prior, he pretty much told us this was a problem that needed to be taken care of immediately. But he spoke with us for at least an hour, drew us a diagram of the area and problem, and was very patient with all our questions. He explained that if he did repair the arch now, then in 8 weeks he would repair the aneurysm. When he left, he had not yet decided as to what surgery he wanted to do and was waiting on a phone call from a colleague from Stanford to advise him. He did have us sign a consent form for a surgery. We're just not sure which one.
Even though we were not looking forward to going through another surgery in 8 weeks, we had convinced ourselves that repairing the arch was the way to go. The next morning, we went through pre-op procedures for over 2 hours, and didn't find out what surgery he was actually going to have until 30 minutes before they wheeled him in. No one knew anything (except the anesthesiologist with terrible bedside manner. He went into depressing detail about the risks involved with the aneurysm surgery. Hello- this is not quite the pick me up we were looking for.) Finally, Dr. Bolman came in and told us he was in fact going to repair the arch.
Eleven hours later Bill was out of surgery. All had gone well. It turns out repairing the arch was the right choice- the arteries leading out of the arch were dissected and enlarged and Dr. Bolman removed a large blood clot from one. The clot explains why Bill was frequently getting dizzy and eventually passed out the week before surgery.
After the surgery, Bill wasn't on anything to keep him under. We were told he would wake up whenever he could. After a day or two, I was getting nervous and was then told he had probably suffered some sort of brain injury but we wouldn't know the extent until he woke up. He eventually did wake up 4 days after the surgery. He had absolutely no short term memory, suffered from dementia, and had little control over his arms and legs. When he had his first meal, he refused any help from me. But when he tried to do it himself, he would raise his hand to his mouth, open it, and act as if to eat, but he never even had a fork in his hand. This continued for about a week. It was so hard to see him this way, not knowing if things would ever get better.
But things did get better. He made great progress over the next week- he was extremely motivated to get out of the hospital. He did not want to be in there 8 weeks like last time. Physically, he worked hard at rehab. Mentally, he tried to understand what had happened and to get his memory back. He was only in the hospital three and a half weeks- victory!
I took 4th quarter off from my job in order to help him regain his strength for his next surgery. When he had his post-op appointment to schedule the next surgery we were given some unexpected news. When he repaired the arch, Dr. Bolman dangled an 'elephant trunk' of the arch graft into Bill's aneurysm and did some fancy stitching. This took some pressure off the widest part of the aneurysm and actually decreased its size from 5.9 to 5.5. He recommended we postpone the 2nd surgery and let Bill recover more. He felt the size was stable and the risks too great to undergo another procedure if it wasn't medically necessary. We had psyched ourselves up for this next surgery and to find out we didn't need one was a weird letdown. But we got over it and were happy to have a 3 month reprieve. I decided not to go back to work and to enjoy the time we had together.
Bill's July MRI showed the aneurysm still stable. He is scheduled for another MRI in December. If all is still well, then I guess we just continue with semi-annual MRIs.
He has since retired after 37 years in the St. Paul Schools. We took a few trips this summer, worked on the house, and enjoyed our children.
I am back at work, the kids are in school, Bill is feeling better than ever, and our lives are settling back down to normal. Normal is good.
Update: 09 Feb 2004
Bill's had his MRI in December, but wasn't scheduled to meet with his surgeon to find out the results until mid-January. After a few days of driving ourselves nuts with worry and wonder, he convinced the cardiac nurse to look over his results just to give us a general idea of what was going on. She told us the aneurysm hadn't grown since July- yeah! So we took that news and ran with it to Mexico to celebrate our 10th anniversary- a trip we will never forget.
When we did meet with Dr. Bolman, he was also excited about the news, but then threw in a,'But...' (I hate those!) So the 'but' was that even though the aneurysm is stable, we can't put off fixing it forever. He is concerned if we wait too long, the arteries might calcify or something (I forgot my mini-tape recorder), and be harder to work with during the repair. He doesn't feel Bill is in any immediate danger of rupture, but stressed that we can't just forget it is there - like we could forget.
So Bill is scheduled for another MRI in May and then tentatively scheduled for surgery in June. He went over all the risks with us again -ick- and wanted to make sure we had all our questions answered. Even though we knew it would have to happen eventually (after the 1st surgery, Dr. Bolman did tell me that Bill was going to be a very sick guy for a long time), we were kind of in denial about it all. We had convinced ourselves that if the aneursym didn't grow, he'd be okay. So when the appointment was over, our minds were confident and rational, but it took a few days for our hearts to accept all the crap that comes with another surgery.
So, life goes on here in the North Star State. Bill is going to use the next six months to get in better shape (nothing like a doctor's scale to scare you into losing weight), and we are going to savor and relish in the good fortune we have been blessed with so far.
Thanks for all the kind words and prayers sent our way over the last two years- you have made a difference.
Update: 10 July 2004
Well, summer hasn't exactly turned out like we thought it would. In May, Bill went for his 6 month MRI and we met with his surgeon on June 2 to discuss the results and schedule the next surgery. He had told us in January that regardless of growth, we couldn't put this off forever but could wait until summer when I'd be off from school.
We arrive on the 2nd to hear that- good news- the aneurysm hadn't grown and measures 5.5 or so. He goes on to say that since things are stable, we can continue the 6 month MRI routine until things change. I think I blurted, "What? You told us in January we'd have to have this surgery regardless." and he says, "Really, I don't remember that." In hindsight, I don't know what I was so upset about- it's not like I want Bill to go through this all again. But at the time, I was pretty wired about it. I went on the offensive (but with kid gloves- this man has saved Bill's life twice) and kept asking questions. The appointment ended with the surgeon telling us he would send Bill's films off to experts at Stanford and Houston and would call us when he found out.
Two weeks later, he did just that! He called personally to tell us that the experts said that yes, the operation could be done, but it could also wait- he's not in any great medical danger. We hate shades of gray! Anyway, we decided to wait another 6 months and see what another MRI brings us. Our surgeon was wonderful to tell us if and when the time comes to have this surgery, and we wanted 'someone who does these things all the time' to do the operation (Stanford or Houston), he would work on our behalf with our HMO to help make it happen.
It always seems to take us a day or so to let this news digest. On the one hand, Bill is healthy, we have the summer free and were mentally prepared for this surgery. On the other, opting for surgery because it's convenient is probably not the best reason. I feel pretty silly having whined about a healthy husband after looking back on it all. It just goes to show that no matter how much you plan and research and think you have it all figured out- that old curveball comes across the plate and you're left thinking, "I sure didn't see that one coming."
As always, you are all in our prayers. For we know too well, that even when things seem over, they never really are.
© Copyright 2002 Kristen Lynch
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