Aneurysm Tales: Tim and Jane’s Medical Adventures, Part 3

Remember that fun story I told you guys about how my husband Tim had sudden lower back pain on Feb. 25, so we went to the emergency room at Munson Medical Center in Traverse City, and they sent him by ambulance to University of Michigan Hospital in Ann Arbor for emergency aneurysm surgery? That was Part 1 of the story. Click here to read it.

Then I told you guys another fun story about how he came home from Ann Arbor, went back to the Munson emergency room with pain, and they sent him by ambulance again to U of M Hospital for yet another emergency aneurysm surgery. That was Part 2. Click here to read it.

This is Part 3 of the story. I’m really hoping it’ll be the last part for a while, although as we all know, anything can happen and usually does, in our case.

To recap, the first two surgeries mentioned above were to fix an abdominal aortic aneurysm that was discovered during Tim’s liver transplant in 2003 at U of M Hospital. Everything went well with the liver transplant, and they were going to keep an eye on the aneurysm. In 2009, via a CT scan in Traverse City, we learned that the aneurysm had grown to a point where it required immediate attention.

At the time, we discussed whether to do the surgery at U of M or Munson. We chose Munson because it had to be dealt with immediately, and that decision has haunted us ever since. The vascular doctor who did the surgery at Munson botched it and put the stent in the wrong place, closing off the artery to one of Tim’s kidneys (causing him to lose that kidney) and severely compromising the other kidney, which continued to operate post-surgery at about 20 percent. Email me at [email protected] if you’d like the name of the Munson vascular doctor who botched the surgery.

After that doomed surgery, we went to U of M Hospital for a procedure that we hoped would restore some of the blood flow to that remaining kidney. It didn’t work. After the procedure, the doctor told me he tried his best, but just couldn’t find a way through that artery to help the blood flow more freely to the kidney. I specifically remember this, because he took me into a private waiting room, and I thought for sure he was going to tell me that Tim had died. But Tim didn’t die, and I’m glad I had no idea the road that stretched before us. Some things are better left unknown until you have to deal with them straight on.

At this point, U of M was supposed to keep us in their system for the aneurysm, which was still there and unbeknownst to us, growing slowly. But for some reason, we dropped off their radar. Through the years, Tim limped along with one kidney operating at 20 to 30 percent. He technically had Stage 4 Kidney Disease and was put on U of M’s kidney transplant list. Although he took a bunch of blood pressure meds to keep things humming along, he was doing ok, and his kidney numbers stabilized to a point where he was taken off the transplant list.

We didn’t really think about it much again until Feb. 25, 2017, when we learned that the aneurysm had grown to a point where it could burst and kill him at any moment. I think it was always in the back of our minds that this day would come, and here it was staring us in the face.

Those first two surgeries I mentioned at the top of this story, performed on Feb. 26, 2017 and March 8, 2017, were what they call lesser-invasive surgeries (though you couldn’t tell it by the amount of time we spent in ICU). For these surgeries, they went in through small incisions in the the groin area and attempted to shut down any arteries that were feeding blood into the aneurysm.

What was really happening, which we learned after the third surgery, is that there were some arteries way behind everything that couldn’t be seen during the first two surgeries. So each time they completed those first two surgeries, they thought they’d seen and dealt with the offending arteries. In reality, those hidden arteries continued to pump blood into the aneurysm, in effect, blowing the aneurysm back up each time the surgeons cleaned it out and patched any leaks they could see.

Here’s how it went down for the third surgery. After the second surgery, everything seemed to be ok. Well, as ok as it could be after they released us from U of M way too soon, in our view. Tim had 40 extra pounds of fluid on him, but they insisted on cutting us loose, even threatening to call security if we didn’t leave. We love everything about U of M Hospital except their discharge protocols, which need work.

So we came home and worked on getting some of the fluids off him. As a side note, every time Tim is given diuretics, his gout flares up. So, of course, he was on diuretics to deal with the fluid, and his gout flared up. But things went along ok. He didn’t have any pain after the second surgery, so we expected to drive down for the followup appointment at U of M on April 4, be told things were progressing along nicely, and be sent home.

When we got to U of M Hospital on the morning of April 4, they did a followup CT scan of his insides, and much to everyone’s chagrin, that aneurysm had continued to grow, now clocking in at a whopping 17 centimeters. The docs said it’s the biggest aneurysm they’d ever seen. Dr. Scott Robinson (whom we refer to as “Mr. Panter” – longtime OMPers will get that reference) could actually feel the aneurysm when he palpated Tim’s abdominal area.

So we checked into the hospital through U of M’s emergency room, and off Tim went to emergency surgery for the third time. This time, they would open him up for the big, open, super-invasive surgery where they could go in and take a good look at what was actually happening in there. You might be wondering why they didn’t do this surgery in the first place. The reason is because they didn’t think he would survive it. As they were wheeling Tim off to surgery, his surgeon, Dr. Peter Henke, told him he had a 5 percent chance of survival, but of course, he would do his best to get him through the surgery alive.

Also, which I didn’t learn until several days after the surgery, they had to clamp off the artery to his one working kidney and his liver. Dr. Henke said Tim would most assuredly lose his one kidney and probably also his liver. The kidney we could work with, through dialysis and getting back on the kidney transplant list. However, they said they wouldn’t re-transplant his liver, so if he lost that, he would die. I’m glad I didn’t know all of this while he was in surgery.

But at this point, we were out of options. We HAD to do the surgery, or Tim would 100 percent be facing death. I’ll cut to the chase here. Tim DID survive the surgery, which took place on April 4, 2017. He didn’t lose his one working kidney or his liver. Both of those lab numbers took a hit – especially the kidney, because of all the contrast scans, which are extremely hard on a kidney that’s already compromised.

But slowly, in the days following the surgery, his numbers started to stabilize. After five days in ICU, the first two of which Tim was intubated, we moved to the cardiovascular center. This time around, no one was pushing us out the door. In fact, they were all very careful about making sure we knew there was no rush to discharge. But it was clear that after three major surgeries, three stints in ICU, and three hospital stays, it would be a while before he was strong enough to go home.

So I scoped out three rehabilitation facilities in the Ann Arbor area. We wanted him to be close to the hospital, because we’d had enough of those four-and-a-half-hour midnight ambulance rides from Traverse City to Ann Arbor, sirens blaring the whole way. I found the perfect one in Glacier Hills, which is the Ritz of rehab places and also offers assisted living, supportive care and other facilities. Tim spent about a month there doing physical therapy a couple times a day and starting the long road to recovery.

We knew this would take a while, so I reluctantly headed north to Traverse City, but not until I felt like he was emotionally and physically ready for me to leave. Tim told me that during those days in the ICU following the third surgery, there were times he could have easily slipped away, and that the only thing keeping him from doing that was holding onto my hand as I “willed” him to survive. After so much medical trauma in a two-month span, he was completely spent and didn’t have one ounce of energy to keep going. I held onto his hand a lot, and every day I would read him all the Facebook notes, text messages and emails from everyone sending their love and support. They kept us going.

On May 9, 2017, after 28 days in rehab and 74 days since that first back pain and ER visit, we had a followup appointment at U of M. Dr. Henke removed 57 staples from Tim’s incision, proclaimed him fit, and sent him home. In fact, he said he didn’t need to see him for a year, which sounded extreme to us, after everything he’d been through.

But Dr. Henke assured us that they’d gotten in there deep, to those arteries way behind everything (as I understand it, they actually took Tim’s intestines out to get at the offending arteries), shut them down, cleaned out the aneurysm, wrapped it around the stents installed during the previous surgeries, and triple-sewed it. Because of all that, he said that artery where the aneurysm once was is now stronger than any other artery in his body.

After the May 9 followup appointment, Tim came home and continues to get stronger every day. All of his U of M doctors are amazed that this miracle man is still alive, and of course, I’m amazed, grateful and happy he’s home with me again.

It’s difficult to describe how important our “tribe” has been these past 74 days – praying for us, sending good vibes, donating to an amazing fundraiser set up by our friend, Kris Hains, and so much more. I have a lot to say about this, and will write it up in a separate story.

For anyone keeping track, here’s the timeline of events:

2003: Tim has a liver transplant at U of M Hospital, where they discover an abdominal aortic aneurysm. While it’s not big enough to require surgery yet, they’ll keep an eye on it.

2009: Tim has surgery at Munson Medical Center to repair the aneurysm, which has grown to a dangerous size. The doctor botches the surgery, cutting off blood flow to one kidney, causing it to die, and leaving the other kidney operating at 20 percent.

Sometime after 2009: Tim undergoes an unsuccessful procedure at U of M Hospital to attempt to repair Munson’s botched surgery.

Saturday, Feb. 25, 2017: Tim goes into Munson’s emergency room with severe lower back pain. A CT scan reveals that the aneurysm is 14 centimeters and could burst at any moment. Tim takes a midnight ambulance ride to U of M Hospital in Ann Arbor. After a couple hours of sleep, Jane drives to Ann Arbor.

Sunday, Feb. 26, 2017: Tim undergoes the first of three surgeries to repair the aneurysm at U of M Hospital. Prior to the surgery, we meet with the vascular surgeon, Dr. Katherine Gallagher, who gives us three options: 1) big, scary open surgery, which Tim most assuredly would not survive; 2) less invasive groin surgery, which he might survive, but would most assuredly end up on dialysis and/or lose his one good kidney; 3) do nothing. We choose option 2, and Dr. Gallagher performs the surgery. After the surgery, she tells us that while nothing is certain, she feels they were able to fix the aneurysm with a stent that went right into place. She also mentions that she couldn’t believe the shredded mess and misplaced stent that Munson’s doctor had left in there during the 2009 botched surgery.

Friday, March 3, 2017: Tim and Jane come home from U of M Hospital. Tim has a severe case of hiccups and still doesn’t feel right.

Monday, March 6, 2017: Tim is experiencing pain (and still has those hiccups). Jane drives him into the Munson emergency room. Around 3 a.m., we decide he’ll be in there at least overnight, so Jane goes home.

Tuesday, March 7, 2017: Jane gets a call from U of M Hospital in the morning. Thinking they’re just checking up on Tim, she’s shocked to learn that Tim is back in Ann Arbor. A CT scan at the Munson emergency room revealed that the aneurysm had continued to grow, so they loaded Tim into an ambulance and drove to Ann Arbor in a severe windstorm during which a wayward branch crashed into the ambulance, breaking a window. They’d planned to take him in the North Flight chopper, but it was too windy. Back home, a tree crashes into the driveway, blocking Jane in. Brother Ward comes to the rescue with a chainsaw.

Wednesday, March 8, 2017: Tim has the second of three surgeries for the aneurysm. Performed again by Dr. Katherine Gallagher, she calls Jane, still in Traverse City, and once again says they believe they were able to fix the aneurysm via the less invasive groin surgery, inserting a few embolization coils in arteries to hopefully block the blood flow to the aneurysm. Nothing was certain, said Dr. Gallagher, but they’d had the entire vascular team on it, and the surgery took 10 hours. She said they only found one tiny leak in there, which was puzzling because the aneurysm had continued to grow, about a centimeter, since the first surgery.

Thursday, March 9, 2017: Jane and daughter Marissa drive to Ann Arbor. Now in ICU and still intubated following the second surgery, Tim is very happy to see them.

Saturday, March 11, 2017: Tim seems to be doing well. Jane and Marissa drive home so Marissa can do homework and get back to class at NMC on Monday.

Friday, March 17, 2017: Jane drives to Ann Arbor to get Tim. Although he still has about 40 pounds of extra fluid on him (he weighs 188 before we leave the hospital), the discharge team is adamant about getting us out of there. Jane brings Tim home that day in a white-knuckle ice storm, during which Tim blows up like a balloon and needs two people to get up the steps and into our house when we get home. Thankfully, our son, Will, was home from MSU to help.

Tuesday, April 4, 2017: After 17 days of home rest, during which we were able to get Tim down to about 150 pounds via diuretics (setting off a gout attack), Tim and Jane drive to Ann Arbor for a routine followup appointment at U of M. A CT scan reveals that the aneurysm has continued to grow and is now at 17 centimeters, the biggest the doctors have ever seen. Tim checks in through U of M’s emergency room and is once again rushed off to surgery. This time, it’s the big, scary open surgery we were trying to avoid because the docs didn’t think he would survive it. But we’re out of options. On the way to surgery, the surgeon tells Tim he has a 5 percent chance of surviving the surgery and will likely lose both his kidney and his liver.

Wednesday, April 5, 2017: Tim survives the surgery, which results in a 12-inch incision secured with 57 staples lengthwise on his abdomen. After the liver transplant surgery and now the “Triple-A” surgery (Abdominal Aortic Aneurysm), he now has bragging rights of being cut in half both ways. He does not lose his kidney or his liver. His lab numbers bounce around for a few days, but he continues to stabilize during four days in ICU, the first two of which he’s intubated. At this point, we know much of the ICU staff by name. They’re all awesome.

Saturday, April 8, 2017: Tim is moved out of ICU and into U of M’s cardiovascular center. He continues to get stronger every day, eating real food and working with physical therapists to begin walking short distances. Dr. Andrea Obi, a vascular surgery fellow and member of the team who worked on him, calls Tim a miracle and says they’d kind of like to keep him around because they rarely get success stories like his. We decline.

Wednesday, April 12, 2017: Tim moves to Glacier Hills Care and Rehabilitation Center in Ann Arbor. Seeing how glad we were to be there, one of the aids says, “Most people come in here all anxious and worried.” We attempt to explain the last two months.

Tuesday, May 9, 2017: After 28 days at Glacier Hills, where Tim continues to get stronger and work with physical therapists every day, he has a followup appointment at U of M. Dr. Henke, who performed the third (big, scary) open surgery, declares him fit and ready to go home. He says things look good in there, and he doesn’t need to see Tim for a year. However, we ask to coordinate Tim’s annual liver and aneurysm followup appointments, and one is scheduled for August 2017. Tim finally goes home to Traverse City. It’s been 74 days from that first emergency room visit on Feb. 25 to May 9, when he finally goes home following the third surgery and a month of rehab.

Thursday, May 11, 2017: Tim has severe heartburn, so Jane takes him into the Munson emergency room, where his EKG looks a little wacky. They keep him overnight and consult with U of M.

Friday, May 12, 2017: The Munson and U of M doctors determine that things look fine. Jane brings Tim home. At this point, we can’t leave anything to chance. Everything has to be checked out.

At this writing, May 18, 2017, Tim is doing well. He currently weighs 130 pounds and continues to get stronger every day. Our local nurse practitioner, the wonderful Suzy Flynn Corwin at Munson Family Practice, would like him to gain about 10 pounds. We’re working on that.

He even took a drive around the Old Mission Peninsula by himself today. It’s surreal to think about the past few months and to have him here, with me, when I thought I’d be facing the rest of my life without him. Suffice to say we’re very, very grateful.