Not Fun, A Walking Time-Bomb
09 March 2004
At the suggestion of Philip Barcola, I would like to share the experience...from the wife perspective. Jim is 54 years, healthy but with a history of smoking. . .A LOT. He was up to two packs a day before a second scare with his heart got him to dwindle his intake of nicotine to a couple of smokes a day. Those are history as well at this point, thankfully.
Jim went in for an MRI in Feb. of this year to check on a herniated disc in his lower back. His sciatica had acted up over Christmas and thought that since the last time it was checked, the disc was completely out, he should probably have it looked at. The MRI showed his back to be in decent shape, but also a 5.5cm aneurysm. Not fun, a walking time-bomb -- the radiologist ushered him to a chair and told him not to move -- there was a meeting in the hallway and it was decided that he needed to see a surgeon, now. That was three weeks ago -- his surgery is actually scheduled for St. Patrick's Day, and because I'm Irish, I feel as though that's a lucky day.
Jim has never had surgery of any kind, save having his knees scoped in the early 90's. He's always worked out, lifted weights (well that part of his workouts is over for awhile) all around healthy guy, save the smoking...a runner till his back went out.
Since the diagnosis, we have found out through the CT Scan that his aneurysm is actually 4.8 cm. His arteries and heart are in great shape and the surgeon is looking forward to taking care of it for him. We are blessed that it was discovered and can be taken care of... Jim, forever the optimist can't wait to get it over with, but he's not enjoying the thought that his body will be laid open. Discussions over stent vs. surgery are yet to be had with the surgeon, but I'm sure it will be covered.
I'm grateful to Philip -- good email buddy -- if you have questions, feel free to write. I'll send in an update after Jim is working on doing stairs again.
Update: 24 Mar 2004
After two hours with the surgeon, we are waiting until June to see whether or not Jim will undergo the open surgery or opt for a stent. The surgeon was willing to maintain the scheduled surgery the next day, but was reluctant based on the facts that Jim was in really good health and the surgery is testy at best. So many factors and possiblities when you open a human body up like that. HUGE factors in determining whether you need to do it "now or later." I went in believing that now is better, for all the reasons, he is healthy now, the aneursym isn't that big (4.8 to 5.5) and isn't it better to get in there and fix it before it gets mean? Not necessarily -- even with the 30% failure rate in the stents, if you get one and it does fail, they gotta go in anyway. So take your options. We've opted to wait until June, have another read on it and go from there.
Interestingly enough, our surgeon's partner, a year ago went home with what he called "horrible back pain" and argued with his wife, an RN over going in to the ER, he said, "I'm the doctor, your the nurse, get me some aspirin and leave me alone..." he died in his sleep that evening. The surgeon was devasted and therefore takes a particular interest in his AAA patients. While saddened to learn of his loss, it was a comfort to know that he would not take the condition of Jim's aneurysm lightly at all, and nor would he ignore a request to get the surgery done now, he said that we could, he would and anytime Jim thought he wanted to go ahead, he will stand at the ready, but it's Jim's call.
Jim is fortunate in that he is a good candidate for a stent and will likely have that put in place in June, but in Denver, where there are specialists that do it all the time. Our surgeon, Dr. Johnson does many open cavity surgeries, but is not trained in the stents. He told Jim, quite contrary to much of what you read and hear, that he should come back in off the limb we were hanging on and live his life. Go back to his workouts, be smart about his weightlifting (less weight, more reps) but basically to quit worrying about it. If anything bothers like ANY pain anywhere to go to the local hospital immediately for a cat scan etc. and his doctors have a standing order that we can take with us.
So we wait, until June and go from there. Jim is changed forever, he's aware of what he has and won't mess around with it, but knowing you have one of these buggars is better than not knowing. At least we know what the warning signs will be. Meanwhile, here's to life! Jim's back to his two hour workouts and feels great, but as for me, his wife, well, I'll always be watchful and concerned. (He's a pretty active guy, what with projects around the house, little league baseball and such. And I still don't like leaving him for very long. I guess that's to be expected.
Thanks for all your responses and well wishes. I've had some great conversations and will continue to respond and watch the boards for your updates. I have found that your stories, information and treatment options have been an incredible asset in gaining knowledge and being able to speak intelligently with Dr. Johnson...and it helps the medical profession as well. From what we understand, there are nine more stents being tested currently -- they continue to look for a better way and we can help.
Update: 21 July 2004
On our way to Helena for another CT and MRI on Jim's vascular system. This trip was going to be, (or so we had thought) time to fish or cut bait, that was not to be the case. The MRI that was done previously was to diagnose a nagging sciatic pain in Jim's lower back. While that gnarly thing still bites him from time to time (currently he's on his back on an ice bag) it was during that procedure they discovered the aneurysm. This visit, the CT and MRI were done specifically for Jim's vascular system and I was amazed at how different the pictures looked. Much clearer pictures of the aneurysm and we could see that there were no other trouble spots (good news).
The aneurysm could now be measured more accurately, and measures smaller than originally thought, 5 cm x 4.17 cm (instead of the 5.5 cm x 4.8 cm) which was also good news (ok, I'm starting to breath again). Jim's blood pressure is great, he's still working out and has the attitude that this thing isn't going to do anything -- and his Dr. felt as though he was probably correct -- because Jim is aware of it, likely his attitude and desire to keep it where it is will benefit him in the long run. So the decision was to not do anything.
When I asked why not fix it or stent it NOW while he's stable and healthy, the response was, "so why mess with a good thing?" I understood -- it was better to leave what is working then to get in there and take the chance of messing something up or causing a reaction you hadn't anticipated -- you just don't do that unless it's necessary. Dr. Johnson (great guy, very straight forward approach and talks in a language you can understand and everyone should be so lucky to have a Dr. Greg Johnson) is sending Jim's film to Salt Lake City for evaluation and a 2nd opinion on his plumbing, so that a team is familiar with him in the event we need to do something.
Dr. Johnson looked at me and said, "you aren't comfortable yet are you?" I told him no, that it was difficult for me to leave Jim alone. He let me know that he would put his notes together for Jim's primary here in Missoula, and that it's a good idea to have a vascular doc here be aware of his health also and from there, to just understand that it was more important to know that in the event that something should take place, Jim's overall health gave him a better than average chance at being just fine. In short, need to learn to live with it and be smart about it. I just don't see myself as a widow, never have -- and my boys, well, not unlike anyone's children -- they need their Dad. So I pray for a long life for Jim and we just enjoy everyday as a gift. Besides, Jim and I have a deal -- when we're old, drooling and can't pee on our own anymore? I get to go first...just couldn't bear the day I would wake without him.
His next check-up is in three months and we'll do it all again, but I have to say I don't mind, there's a certainty about a schedule that I'm grateful for...
We're looking forward to hearing good news from the Havern clan and wish all the very best to Phil Barcola...and thank you to everyone that keeps me posted on their happenings. Our thoughts and prayers are with all of you...interesting "little" family we have going. Seems as though the medical community is thinking more out of the box than ever on our behalf, but there's much education and awareness that has to happen yet. So keep talking to folks you know.
I've spoken to a couple of men I work with -- out of the half dozen or so that know about Jim -- one of them has discovered that he too has a small aneurysm that he is watching. It's a word of mouth thing, the more people that know this can happen the more aware they are of what tests to request from their doctors and to be able to say, "I want my vascular system looked at" not just their blood pressure taken.
Update: 26 April 2006
July 2005
Had another visit and MRI, CT etc. and nothing has
changed. The AAA has not grown and there was some discussion over
whether or not there "really" is one - although we know there is,
Dr. Johnson agrees with Jim, time to come in off the limb and just
enjoy life...keep doing what he's doing with his exercise and
keeping the stress out of his life...easy for the doc to say. As
Jim's partner, I find myself probably thinking about it more than
he does. The doc will follow up every six months continually - life
is good.
December 2005
No change in the AAA - wahoo! Jim's very healthy,
although he still battles the cholesterol - but blood pressure and
weight etc are great - he's a poster boy. Check up in June 06!
Update: 2 December 2008
Jim and flew to the Denver VA Center for his schedule stent procedure. The surgery itself and follow-up was actually done at University Hospital in Denver, the VA partner. WOW! They were wonderful. Jim's surgeon was Pegge Hilandras, a petite woman that packs a powerful set of skills. She brought all of them to benefit Jim and he's doing great. Never having had surgery of any magnitude, he woke out of anesthesia pretty disoriented, but after a couple of hours, he was much better, sucking on popsicles and making the nurses laugh. The incision sites above his groin area were much higher than we thought they would be, and they were pretty darn painful for a couple of days, but not so painful that he stayed any longer then necessary, he wanted to get back to his life. His surgery was on Wednesday, and we flew home on Friday afternoon. Jim is, today, one month after the EVAR is in Denver for his one-month follow-up. I'm waiting to hear, but expect that all is well, there are no leaks and the repair site is behaving - Jim doesn't feel anything in reference to the installed hardware. His surgical site has healed, and other than a path of numbness on his left side from a nerve pinch or nick (which will heal over time) he's doing GREAT. Email if you have questions- ever grateful-Patience--
Discussion, comments, or questions: Patience Woodill
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