Established April 15, 1995
University of West Georgia Disclaimer
27 May 2001
In early January 1996 my family and I drove to Norfolk, VA where I was stationed in the Navy. The weather had been miserable with snow and ice, and I was taking a day off to enjoy the company of my family. My wife dropped me off at work, where I was going to wrap up some loose ends. She was driving the kids to the mall to wait for an hour or so, then return to pick me up for our day. While I was walking into my office I slipped on some ice and fell forward onto all fours. Feeling quite clumsy I got up, brushed myself off, and went inside to work. After about 30 minutes I felt as if a butcher knife had been thrust deep into my back. I couldn't breathe in or out. Indescribable pain radiated down both arms, and I was certain that I was having a heart attack.
I told the Yeoman (a Navy administrative staff person) to call 911 as I thought I was having a heart attack. I then went out into the foyer and lay down on the floor. For some reason I thought I was going to fall over and didn't want to crack myself open before the ambulance arrived. The Navy EMT's showed up within about 5 minutes and gave me nitroglycerin, which eased the pain. They transported me to St. Vincent De Paul Hospital in Norfolk where the ER doctors ordered a CT Scan. They diagnosed a dissected thoracic aortic aneurysm at around 3.8cm in the descending aorta. Not having the staff, they transferred me to Norfolk Sentera Hospital where I was placed in ICU.
After a myriad of angiograms, CT Scans, and reviewing my genetic history the decision was made to not correct the problem surgically, but rather with BP medication. After 3 days in ICU and 3 days in a step down I was sent home. Because I was on active duty I had to get to a USN facility to get another evaluation, this time for fitness for duty. I went to Portsmouth Naval Hospital in early February. I had been taking Verapamil and Lopressor to control the BP, but had suffered a nagging cough ever since being placed on the medication. When I got to the doctors office at the Naval hospital I couldn't say one word without coughing immediately afterwards. I began to get dizzy, and could hardly walk. They sent me down to the ER where I was admitted to ICU for what they thought was a pulmonary embolism of some sort. Another battery of CT Scans and angiograms and they determined that the aneurysm was stable; that I had no embolism, and that the coughing was most likely due to the Lopressor. I spent 6 days in ICU/step-down there before being sent home. I was switched to Lisinopril, and the dosage reduced to only 5mg a day.
By May 1996 I was released from active duty as no longer fit for duty. It was the saddest day of my life. Researching the side effects of BP medication came too late: my 24-year marriage began dissolving, and by 1998 I was a single dad. Recent CT Scan at Henrico Doctor's Hospital in Richmond showed that the aneurysm hasn't grown since mid 1996 (4.6cm).
I feel like a bomb is waiting to go off, but can't do surgery due to a history of Ehlers-Danlos Syndrome (Type-III) (a connective tissue disorder similar to Marfan) in my immediate family. So, I take my BP medicines and wait. I want to have the stent operation to correct my condition, but don't know if I'm a good candidate. With EDS-III, I rather doubt it.
I'm scared that if I have the major invasive type surgery I will not recover completely; that I'll lose a kidney, or the use of my legs, or will have to make huge professional changes to get away from the stress. My kids are 16 and 18, and both are about to start college. I can't afford to make that kind of change. I will continue to risk it until they are out of school. Then, maybe then, I can find a way out of the vicious cycle of hypertension and stressful living. Thanks for listening.
Update 7 Jun 2001
Have just learned that the Radiologist determination of the CT Scan from May 21 ("no change in size of aneurysm") was incorrect. Apparently the aneurysm has grown from 4.6cm to 6.0cm. How a Radiologist could look at a CT Scan and say it showed "no change" on May 21st, then look at it a second time two weeks later and say it had actually grown 30% is beyond me. Isn't it reasonable to expect that a doctor would review things very closely before committing to a statement that could effect a person's life? I know I'm not alone in this sort of frustration. Maybe the 4.6cm reading from two years ago was bogus. Or, the readings from the 11 CT Scans over three years prior to that was incorrect.
As a result of all of this my confidence in the information provided by the Radiology profession is failing rapidly. Now, because I have no trust in the opinion of the first Radiologist, I enjoy the prospect of looking for (and paying for) a second radiology opinion. The question before me now is whether to stay in Virginia or go to where I can get a more reliable medical opinion. Where could that be? How would I know if the Radiologist is expert or a fake? Heck, how does a person know if the medical expert that's treating them is worth a brass farthing, or is just another Ginzu knife sales person? A pompous windbag with a lot of experience on the back nine? Here's a thought...I could take my records to Cleo the Tarot Reader and she could recommend the best technical course of action for me! I wonder if Mr. Goodwrench does readings.
The frustration of having to make life altering decisions when I have no confidence in the information before me is agonizing. I am drawn to making no decision at all. Thanks for listening.
Update 15 Jul 2001
The arteriogram was completed a week ago, and tomorrow my surgeon will tell me whether the endovasive stent-graft or the aneurysmectomy procedure is the safest way to go. I found a website, Journal of Endovascular Therapy, that is great, if one can follow the technical jargon. But, like reading a book on psychological maladies, the risk is imagining that, "Hey, I have that one!", the JEVT can so saturate a layperson with information as to make deciding what to do the biggest fear of all to overcome. I was very impressed with Johns Hopkins; staff, facility, everything. I am grateful for this web site and each of you who have been so supportive.
My prayers go out to those friends who are now undergoing, or recovering from, the trauma of this very major surgery. More up-dates as time draws nigh.
Update 21 Jul 2001
Well, I am not flying on cloud nine. After looking at my arteriogram, my surgeon cannot recommend the stent-graft procedure to repair my 6.0cm dissected descending thoracic aortic aneurysm for a couple of reasons: 1.) The location and shape of the aneurysm may cause a stent to slip and leak, 2.) the stent he had hoped to use has been taken off the market, 3.) there is very little experience in the procedure of applying a stent-graft to an aneurysm of a patient with a connective tissue disorder. I have a follow up consult with him on July 24th, and have a long list of questions. He is recommending open surgery. I trust him as being an experienced professional, and I trust Johns Hopkins as being a excellent facility to have the surgery done. Still, I'm scared.
Have any of you had open surgery to correct a thoracic aortic aneurysm? How long were you hospitalized? How long was your recovery? I understand the surgery is approached from the oblique (they lay you on your side to do it). Which side did they use? I have heard 1 week to 10 days hospitalization with 6-8 weeks recovery at home. I'm a single dad with a 17 y/o daughter and a 19 y/o son still at home. Still, I'm a little worried. I'd welcome any information. Thanks for listening.
Update 8 Sep 2001
Surgery went well. The 6.0cm thoracic aortic aneurysm (TAA) was repaired with a Dacron tube graft. I had made arrangements for my two teenage kids to have a room near the hospital, since we live a good 3-hour drive away from Johns Hopkins. I'm glad I asked the doctor the night before to tell the kids what to expect when they saw me after surgery...almost scared the heck out of me! Two chest tubes (one to drain the surgical site and one to relieve the area around the chest cavity), a spinal drain (to relieve pressure on the spinal column during the procedure), a tube going into my lungs to assist breathing, and another going into my nose and to the stomach to relieve the reaction in the stomach to the surgery. The image helped prepare all of us.
I was in ICU for 3 days then sent to a Step Down floor for a day before being sent to the regular floor for another 3 days. I was then allowed to go home. Well, that should have been the end to it, but no way. I was home for a week of recovery. A miserable week of discomfort and lots of pain meds. Nothing was feeling any better. By the time a week was up I was having an awful time with breathing. So much so, that I went to the Emergency Room of the little hospital close to home, and they diagnosed that I had a collapsed left lung. That sent me back to Johns Hopkins, and thus began my second week of hospitalization.
For whatever reason my left chest cavity had filled with fluid from my lymph nodes. They inserted a chest tube again (just like the one that they had in place after the surgery) and drained off 2.75 liters of this lymph fluid. No wonder the lung couldn't inflate. Having a chest tube inserted and/or removed is painful. They also performed a lymphography to examine the degree of the internal leak. No leak was found, and it was determined that the body had healed itself. I was there for a week of regular x-rays and observations, and now I'm home again. I pray this is my last venture to a hospital for a long time.
The prayers and well wishes from everyone have overwhelmed me. I am humbled so by the closeness of friends and family. God bless all of you. Thank you!
Update: 09 Feb 2004
Just before my surgery in 2001 a CT Scan revealed a AAA that extends from the renal branch down to the illiac (left and right). This has been monitored every 6-months with a CT Scan since then, and will need to be repaired probably in May/June of this year. To add to the excitement is a left sub-clavian aneurysm that is "being watched". Apparently all these happened as the result of the same injury (I fell on the ice in 1996).
I have a connective tissue disorder (probably Ehlers-Danlos), I am 59 years old, and I wonder how many more aneurysms I'm going to have.
Has anyone had more than one aneurysm repaired, and what did the experience do to your life style?
Thanks, and may God continue to bless you all.
Update: 10 October 2004
Well, it's that time again. The AAA just below the renal area and the two aneurysms (one in each leg below the branch) are scheduled to be repaired conventionally on 03 November at Johns Hopkins. The repair to a dissection of the descending aorta to just above the renal canal was done in August 2001, and these others (plus one in the left sub-clavian area) have been watched with CT Scans ever since. The sub-clavian aneurysm will be the only one I'll have left, once all this is done. The plan is to replace the aorta from the lower portion of the first graft all the way down, past the renal branch, to include the right and left iliac aneurysms. I'm beginning to feel like a Dacron Man, and wonder how many brain aneurysms I have that I don't know about. It's hard not to get paranoid.
It's harder this time for a lot of reasons. I'm 59 years old now. I was a single Dad back then, and my daughter and son were at least still around. "Someone to watch over me...", as the song goes. This time, daughter is away in college and son is busy, but has promised to be there if I need him. My recovery at home will be up to the TV set and my old dog to manage. I imagine what's it's like for those without anyone close by at all, and I really feel humbled and especially blessed that my son will be able to drop by now and then.
If anyone has had multiple aneurysm repairs please let me know what you went through on the second, third, etc surgery and recovery. Just trying to brace myself.
I ask for your prayers, and pray that God bless and keep you all safe and happy.
Update: 13 October 2004
I will be at Johns Hopkins and unable to reply to e-mail or phone messages from 01 November until I return home (probably on/around 15 November at the earliest).
Mary Jo will be sending out e-mail updates on her old Dad's condition. So, if you see a note from mjwheaton@liberty.edu, please know that it's from Mary Jo. Sam is able to take a vacation from his work-a-day grind, and he and Mary Jo will be with me whilst I'm sampling the culinary delights of hospital food and the literary cuisine of old medical magazines. The phone number for Patient Information at Johns Hopkins is: 410-955-5000.
Please pray for all (especially our coalition troops) to find peace, good health, happy spirits, and a safe journey home. I pray you are well, and hope to speak with you soon. Cheers, God's blessings, and my very best wishes to you all!
Update: 11 November 2004
I cannot express the feeling of complete gratitude that I have for your prayers and best wishes as I went through this most recent surgery. I am overwhelmed.
My surgeon looked a me in ICU and said, "My God, Larry...you're indestructable!" The nursing staff were tolerant of my whining and complaining, and smart enough to know when I was trying to pull a fast one. Johns Hopkins provided superior care.
The blessings I have enjoyed from Our Lord have been much more plentiful than the bubbles in the waves along the beach...your prayers have been most gracious, and they were answered by God. Thank you from the depths of my heart.
Now, at home with time on my hands, God allows me to write you. My thanks to you, and all praise to Jesus.
Update: 21 June 2005
I have just been advised that the aorta between the graft of my descending aorta (repaired in August 2001) and the AAA (repaired in November 2004) (the intersection of the renal and spinal arteries...whatever that intersection is called) has developed an aneurysm (5.4cm), and now a third surgery is going to be needed probably around the middle of July.
I would like to have an endovascular stent inserted in that area, although the risk of occulsion of the renal artery or spinal artery is probably great. Has anyone had or heard of an endovascular stent being placed at that intersection?
Thanks in advance for your prayers and support. I need every single one.
Update: 6 August 2005
Yes, it's that time again. Back to Johns Hopkins for yet another (third) repair of aneurysmal problems in the aorta. First there was the repair of the descending aorta (AUG 2001), then last year the repair of the abdominal aorta down to include both iliac arteries (NOV 2004), and this time the effort will fix the area between the two previous grafts...the intersection providing blood to the kidneys, liver, spinal column, and intestines, just to mention a few.
This is more delicate than the previous surgeries given all the critical branches, and I am not looking forward to it. I'm of the opinion that a zipper or maybe velcro should be sewn in to my flank, thus allowing easier access. There still remains one aneurysm untouched in the subclavian artery, and heaven only knows what the aortic root looks like.
I ask for your prayers. There is no stronger force in this world than prayer, for our Lord truly hears each and every one. We may not like the answer we get, but God does hear them all.
Thank you in advance.
Update: 11 August 2005
I will be going in for surgery at Johns Hopkins in Baltimore (again) on Wednesday, 17 August. This in the continuing saga of aneurysmal repairs to my crappy aorta.
Whilst I'm in the hospital (about 1-week) Mary Jo has once again been drafted to keep you all informed as to what her old pop is up to. Both she and Sam will be with me as much as their schedules will allow.
God willing, I will be back on the job before Labor Day. I ask for your prayers, and sincerely thank you for being part of my list of family and friends.
Update: 17 August 2005
My surgery was postponed at the last minute, and I'm back home again.
Seems I have two loose teeth, and the concern is that if, during surgery, it becomes necessary for the doctors to give ventilator therapy (not uncommon) that the insertion of the device may dislodge a tooth and cause a very rapid massive infection that would be difficult to control.
So, today I am searching for a dentist. As soon as I can get the loose teeth either stabilized or pulled I can re-schedule the surgery.
This feels more ridiculous than it sounds, but the doctors are especially serious, and I have no choice but to agree with them.
The final date for my surgery is now yet to be determined, but I will let you know.
My deepest thanks for your continued prayers and best wishes.
Update: 10 September 2005
Well, I got the teeth thing fixed, but now have decided in my ample age to try to arrange the surgery with a hospital and doctor a little closer to home. Johns Hopkins is certainly the premier hospital for vascular surgery, but it's a long drive.
So, now there will soon be a couple more appointments with a new group of surgeons, and then to schedule the whole thing all over again. Will let you know what the plan is. Will probably have the surgery done within the next couple of months, so stay tuned. I am undaunted.
Your prayers mean the very world to me, and I cherish each. I very humbly thank you for them and beg God to bless you completely.
Update: 15 October 2005
It's been a long trek. The search included University of Virginia, Johns Hopkins, Medical College of Virginia, etc, with considerations to Cleveland Medical Center (endovascular Mecca, by the way), University of North Carolina, and the Mayo Clinic. But, God's will is done perfectly regardless of where we find ourselves. We can become inebriated by His many blessings if we only give Him control. Driven to find the doctor and the hospital that would give worldly assurance, and with good health care insurance, I have decided to return to Johns Hopkins (Dr. Mel Williams) to have the (hopefully) last aortic aneurysm repaired. Dr. Williams was my surgeon back in 2001, and he has my complete confidence.
I'll be admitted to Johns Hopkins on 08 November with surgery planned for 09 November. God willing, I will be home by around 15 or 16 November and able to get back to normal a couple of weeks after that. Sam and Mary Jo are taking time off from work and school to be with me and to take care of the homestead. Mary Jo will be releasing details to keep you up to speed.
All of your prayers and most kind thoughts have meant and continue to mean the very world to me. I am truly humbled. Thank you so very much. God bless you all.
Update: 6 November 2005
I am finally going off to have the surgery thing at last, consummated with Johns Hopkins admission on Tuesday the 08th and surgery early on the morning of the 09th. Of course, I've got the expected trepidation about doing it, but quite frankly the task has to be done, and the sooner the better. Besides, all things being optimal, with God's grace, a measure of good fortune, and my natural stubbornness, I will be out of ICU by around the end of the week, and (hopefully) home by Tuesday, 15 November. Mary Jo will be posting whatever my goings on will be. Both she and Sam will be with me.
The peaceful assurance I have of the prayers and well wishes from family and friends is truly the most treasured blessing a person can receive, and I sincerely and humbly thank you. There are so many who are suffering the loss of home, health, and family these days. I pray that God gives each of us the peace, courage, and resolve to get through our own hard times for there really is a safe and immaculate harbor waiting for us. God has never left my side, and I am certain that He never will. I am blessed in so many ways.
Enough. Cheers!
Updates submitted by Larry's daughter, Mary Jo.
9 November 2005, 7:19:39 pm
Well the surgery day is finally here and we are doing
a excellent job of sitting around, waiting, and listening to what
we are told. Dad went in early this morning but the surgery is
taking a bit longer than expected. All is well they are just taking
their time and making sure they do their jobs flawlessly. I am
confident that they will. The last update we received was that
everything was going well and they may be done in three more hours.
That was at around 1800 (6pm). I will be sending out another e-mail
when Dad gets into ICU which may be anywhere from 2100 to any odd
hours of the morning. If you need any of us for anything at all
feel free to call my cell (540-589-1552). Otherwise you will hear
from me soon. Thank you always for your prayers and concerns.
In Christ, Mary Jo
9 November 2005,10:39:29 pm
Dad is out of surgery and in ICU. He's still under and
will probably "sleep" through the night. There is an excellent
staff monitoring him. The nurse told us that he will probably have
the breathing tube in until later in the day tomorrow. He should be
out of ICU "in a few days" according to the same nurse. You never
know exactly what to expect when nurses make broad statements like
that. But we are hopeful that he will be out of ICU this weekend.
Sam, mom, and I should be able to see Dad around nine tomorrow
morning. I will keep the updates coming as I acquire more
information. Keep lifting up the prayers! We are praying for a
speedy safe recovery.
In Christ, Mary Jo
Update: 12 November 2005
Thursday, 11:24:40 am
We just got back from seeing dad. He's starting to
wake up but still seems exhausted. The goal for today is for him to
get up enough energy to breath on his own. It seems like getting
the breathing tube out will be the first stepping stone out of ICU.
The doctor that will be watching over him today said that he is
"recovering phenomenally". What an encouragement! We're going to be
popping in and out of ICU today checking on his progress. If there
is any specific question or concern please feel free to call my
cell. That's what its there for. Thank you all for the overwhelming
support you've shown for my dad. He's a good man and one stubborn,
old sailor. So we know that he is fighting to be well again. I'll
be in touch.
In Christ, Mary Jo
Friday, 4:51:14 pm
Dad was awake when we went to see him and luckley had
the breathing tube out. He seems to be fine and in a fairly good
mood. The nerse told us that he would be moved into a step down by
tomarrow. Once he gets into step down we will send out a phone
number where he can be reached. Thanks again for all your prayers
and support.
Sam and Mary Jo
Update: 14 November 2005
Monday, 10:53:33 am
Good news! Dad is out of ICU! He is in step down and
looks like he is doing great. The staff never ceases to amaze me
with their above parr care. My only complaint is the lack of
clarity concerning when Dad will be able to go home. Step down is
great but we want to see a healthy Larry back in his own home and
life. So does he. The worst is over. Now we can thank God for
getting us through the tougher times and ask for a healthy
recovery. I will definitely let you know when Dad is going to be
released.
One love, Mary Jo
Update: 17 November 2005
Thursday, 3:47:51 pm
I just talked to Dad and he sounds great. The last
tube has been taken out. Yesterday Dr.Williams, Dad's primary
surgeon, said that Friday would be the earliest Dad would be
released. Today they told him that he might be out later this
evening. So we're still up in the air. He's ready to get out of the
hospital, but they may not be ready to part with him just yet. At
any lengths the end is near, or at least the begining of the
end.
This just in- DAD's GETTING OUT TODAY!!!
My phone rang in the middle of my typing. Dad is going to be released today. Thanks to God answering parayer and modern medicine working for us. So its safe to say if you called his house in Montross in the next few days he'd be there. That number for anyone who may want it and not have it is (editor's note: please email Larry for his telephone number). This will be your last e-mail from me so let me thank you all once again for caring so much about my Dad.
One Love, Mary Jo
Update: 18 June 2006
The two sites below discuss one of the (apparently) many connective tissue maladies that have revealed some or most of the characteristics in my family. My mother died at the age of 44yrs in 1960 following repair of an abdominal aneurysm. My nephew died following surgery to repair an ascending aorta aneurysm in 1976. He was 16yrs old. My sister died of what was called a "storm of aneurysms" in the abdomen. My niece (her daughter) recently had repairs to an aneurysm in the ascending aorta. And I have had three surgeries to repair aneurysms in the descending and abdominal aorta. One aneurysm remains in the left sub-clavian artery that will probably need repair later this year.
Doctors had diagnosed on various visits characteristics of Marfan Syndrome and on others Ehlers-Danlose Syndrome. One cousin diagnosed with Williams Syndrome and MFS mothered two magnificent daughters without any characteristics apparent. Most recently Loeys-Dietz Syndrome was postulated as a possible feature in my family. I had the great opportunity to have my children evaluated by Dr. Dietz at Johns Hopkins back in the early 90's, and he commented to us that while my son showed only a couple of indications of MFS, my daughter showed more.
My son is a lanky fellow (now 23yrs old), while my daughter is small in stature (22yrs old). Dr Dietz explained at the time that connective tissue disorders can sometimes present characteristics of a mix of several different syndromes, that just because all the characteristics are not present doesn't mean there isn't a conncetive tissue problem. The one over riding theme in managing these horror stories is for early diagnosis and a regime of regular monitoring. As the human body grows it changes, and characteristics that aren't present at one age may appear later in life. In some cases, much later in life.
The sites below include some important information on Loeys-Dietz Syndrome, and I invite readers in their own effort to be better informed to add them to their library of references. One is especially technical, but a person can read between the lines.
Loeys-Dietz Aortic Aneurysm Syndrome
God bless.
Update: 6 September 2009
With Bill's passing (God bless him) I thought this site had folded. I celebrate that it, too has survived!
I have survived my life so far. My initial calamity befell me in January 1996 with a dissection of the descending aorta. Conventional surgery in 2001, 2004, and 2005 finally corrected the many problems. Now, thanks to my connective tissue malady, aneurysms have developed at the aorta just above the surgical repair, also in the left sub-clavian, right sub-clavian and the arteries going up the neck. The tortuous reality of my arteries defies belief and has exacerbated every opportunity for normal repair and healing. Only the grace and hand of the Living God has spared me, and only He can get me through the next surgery, planned now for the spring 2010. I am now 64y/o. My kids have grown and moved to far off places. I will be a grandpa for the first time this December. I live alone but for my dog.
Has anyone out there had conventional repair of a sub-clavian aneurysm? I have had three massive surgeries via the left flank. I have over the experience lost a kidney and all muscle control on my left side. I should have a zipper installed. Maybe this time they will go through some other aspect of my wasted physique.
Pray for me as I pray intently for all of you. Thank you and God bless.
God bless.
Discussion, comments, or questions: Mary Jo Wheaton or Larry Wheaton
© Copyright 2001 Larry Weaton
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