What a difference a week makes!

Boy, are we glad to be home. Joel is doing so good. He just had his last home health care visit with a nurse this morning. He is down to 202 pounds (six months ago he weighed 257). Last fall, he stopped eating seconds and purposely started coming home to eat a healthier lunch. He has lost 55 pounds in 6 months or an 8 year old :). So proud of him.

He is adjusting quite well to his new medicines. He is on some pain pills (but slowly weaning himself off), a blood thinner, baby aspirin, and a few beta blockers and ace inhibitors (so his heart doesn't have to work so hard). They hope to have him off all medications in 90 days.

He is getting around really good. Taking a shower by himself. Getting dressed without my assistance. Doing small things around house like laundry or emptying the dishwasher. And, most importantly, getting caught up on past episodes of Judge Judy.

He can't drive for a month. So, I have to pack him up like a toddler in the back of a mini van and drive him around. That doesn't make him very happy. :)

I need to extend a huge thank you to everyone who has helped us. Your support, love, concern, and prayers have helped us get through this. We couldn't have done it without you. We are forever grateful.

To everyone who has sent us cards, e-mails, instant messages and words of encouragement, you are awesome. Your words of motivation and compassion were just what we needed.

To Amy and Gary Robbins, thank you for coordinating food to be brought to us and for coming to see Joel in the hospital in Chicago. What a wonderful surprise that was. Also, thank you for bringing us your own family dinner on Wed night when you found out we hadn't eaten yet! You are the best friends anyone could ever ask for!

To our families -- thank you for ALL you have done to support us through this time. We could not have done this without you. I so appreciate how you've just jumped into to help us when you saw we had a need for something. We are so blessed because of you.

To God, thank for you answering all of our prayers and seeing us through his time.

Joel will go back to Northwestern for a follow up visit in a few weeks. Doctor said he should have his pilot's license back in 3 months. Yay for Joel.

Enjoy your weekend because we sure will!

With love, Michelle

Joel is doing great! We are on our way home! Yay!!

Joel: The Comeback Kid

Happy Mother's Day! I miss my girls so much. :( They are having a blast with my sister so I am happy about that.

Again, thank you to all for your words of encouragement and prayers. Modern medicine is wonderful but I truly believe Joel's miraculous recovery is a result of the all the prayers coming our way. Keep them up!

He got moved from ICU to the regular cardiac floor last night around 11:30 pm. Today, he ate a full breakfast and lunch, read about half of his new Bill O'reilly book my dad bought for him, and we just finished walking the halls. His pain is under control and feels as good as can be expected! Yay Joel. He is such a trooper and hasn't complained one time despite everything.

He will have a chest xray, echo, ekg, and a few other tests tomorrow to establish a baseline. If he continues to improve like he has -- he will be home sooner than later! Wow. I cant even believe it.

I am gonna try to take a nap while he is sleeping. More soon.

Love, Michelle

Live from Nothwestern....it's Saturday night!

Let's see...cath and large chest drainage tube were removed this afternoon. All test results coming back continue to be excellent. He sat up at lunch and dinner for a couple hours. Nurses and docs continue to comment on his great recovery. Around 6pm he walked around 30 feet. YAY! His first steps ;0.

He's pain is under good control. He is so very peaceful right now. He just told me how happy he is that his surgery over. He said, "Michelle, I have been given a second chance. I have so much to live for. I am thankful to God for seeing me through this and for all our friends and family for their prayers, love, and concern.":)

Thank you so much to everyone for your all notes, emails, and calls. We are so very blessed.

With love, gratitude, and thankfulness, Michelle

MUST WATCH

He who has health, has hope. And he who has hope, has everything.

Joel is doing considerably well despite his tremendous pain. They made him sit up in a chair for 2.5 hours this morning and that about did him in. He had a few routine procedures this morning: took the main line out of his neck and replaced with a smaller one, took blood, and an xray. He should get his cath and main chest drainage tube out sometime today.

I have never ever been witness to such tremendous health care in my life. Joel has a full time nurse dedicate solely and fully to him. Northwestern Hospital = excellence in health care. Wow, what a difference 200 miles makes. They know him, they know his needs, they know his history. He waits for nothing - if he asks for something -its taken care of immediately.
The comprehensive health care is truly amazing and the staff are so passionate about their jobs - it leaves me shaking my head in astonishment. They work as a team and as a result of that -- there is no confusion among the various doctors seeing Joel, no repetition of information, etc.


Funny side note, my parents and I were at the hospital for over 19 hours yesterday --only leaving for two very short stints to eat. After we came back from dinner, Joel looked at me and said, "Wow. I can't believe you are just now coming to see me!" I was like, "huh"? He said, "I've been here alone all day...where have you been?" Poor thing -- he was on so much medication that he didn't remember all of us being by his side :(. I told him we were all here all day and I had the pictures of him flipping me off and the blog to prove it :).

He is going to try to eat lunch...hasnt had anything to eat since Thursday at 7pm.

Thank you all for you continued concern and prayers.

More soon! Love, Michelle

PS- Happy Birthday, Joel SR! We love you!

Power of Prayer Can't Be Denied

Joel is doing amazing! They repaired the aorta and his valve. In deed, God heard everyone's prayers. Thank you all so much. Thank you God.

He was off the vent in record time. They told me he would not know me or be able to respond for 24 hours. Within about 3 minutes of me being in the room, he reached for my hand. He is fully attentive and doing so amazingly well. He just asked me to take his face mask off and he gave me a kiss and signed I love you ;).

He is in alot of pain but he has a nurse fully dedicated to him and she is wonderful. I cannot believe the care at this hospital. I have never seen anything like it. He'll be in ICU for the next few days.

A huge thank you to our friend Melissa Shyrock. It is because of you that we are here and Joel is on the road to recovery. Nothing I could do would come close to repaying you for all you've done. God bless you.

Please pray that he continues to have an amazing recovery.

All my love, Michelle

Doc just called

They were able to repair his valve and fix the aorta!! Yay. Prayers answered once again. His heart is very, very weak but we already knew this. Doctor said there were no surprises and that he is doing as good as he possibly can. They will be working on him for about two more hours and then I will get to see him...but, they are keeping him sedated many hours after surgery so he wont know I am there. More after I get to see him. Off to lunch with my mom and dad...I need a cold beer!! Love, Michelle

What is a thoracic aortic aneurysm?

What is a thoracic aortic aneurysm?

The aorta is the largest artery in your body, and it carries blood away from your heart to all the parts of your body. The part of your aorta that runs through your chest is called the thoracic aorta (this where Joel's problem is) and, when your aorta reaches your abdomen, it is called the abdominal aorta.

When a weak area of your thoracic aorta expands or bulges, it is called a thoracic aortic aneurysm (TAA). Approximately 25 percent of aortic aneurysms occur in the chest, and the rest involve the abdominal aorta. Again, Joel's is in his chest.

Thoracic aortic aneurysms are a serious health risk because they can burst or rupture. A ruptured aneurysm can cause severe internal bleeding, which can rapidly lead to shock or death.
Thoracic aneurysms affect approximately 15,000 people in the United States each year. We seem to be 1 Percenters in this family. Only about 20 to 30 percent of patients who get to the hospital with a ruptured TAA survive. For this reason, it is crucial to treat large aneurysms early, in order to prevent their rupture. Thank God Joel's was caught. These doctors are so amazingly comprehensive here! They are repairing it with a stent graft as I type this.

What is Endovascular Stent Graft Repair?

Endovascular means that the treatment is performed inside your body using long, thin tubes called catheters. The catheters are inserted in small incisions in your groin, and sometimes your arms, and are guided through your blood vessels. During the procedure, Joel's surgeon will use live x-ray pictures viewed on a video screen to guide a stent-graft to the site of his aneurysm --upper part of his aorta. Like the graft used in open surgery, this stent-graft allows blood to flow through his aorta without putting pressure on the damaged wall of his aneurysm. This keeps his aneurysm from rupturing. Over time, his aneurysm should shrink.

With the endovascular stent-graft repair, it is particularly important that long-term follow-up with periodic scans of the aortic repair be done to be sure that the stent-graft is functioning properly. Sometimes further procedures are required to maintain the stent-graft if leaks develop or if it moves out of position. But, none of this should be a big deal because have transferred all Joel's medical records here and all of his follow up care and any future medical needs will be done here at Northwestern.

Got him on the heart and lung machine

Just got an update from OR room - they've successfully got him on the heart and lung machine now. Will post more when I hear back.

Tests are a good thing!

We arrived at 6:30 am and were able to meet with the team of doctors before he has taken away for his surgery. I've never seen so many doctors and assistants(20 or so) for one patient. Wow. He is in great hands. Melissa hand picked all the doctors and assistants and nurses for Joel's surgery. She referred to them as the "A Team" :).

Joel had an MRI and MRA yesterday and they found that he actually has another problem...he has an aneurysm in his aorta (what John Ritter died from). So, they will be taking care of that too during the open heart surgery and hopefully, putting a graft in, if possible. Otherwise, they will put a tissue valve in. This complicates the surgery a little more and they expect the surgery to be about 6 hours. He will also be in the hospital for at least week now.We are so lucky this was caught because aorta aneurysms have no symptoms -- until after the fact. Joel's cardiologist said last week -- she wanted to just do a little more checking and a few more test -- thank GOD she did. They called us late last night to inform us of the test results. Par for the course :).

His team of docs and nurses are calling me throughout his surgery with updates. I just got the first call five minutes ago. They cut him open at 9:15 and when they get him on the heart and lung machine -- they will let me know.

That's all for now. Love, Michelle

Yippeeee!!!

Just got a phone call from Melissa at Northwestern University. Dr. Rigolin (Cardiologist) and Dr. McCarthy (Surgeon) have fully reviewed Joel's records.

He needs open heart surgery-- mitral valve repair-- as his posterior valve is fully ruptured and while the anterior valve is a little loose – it’s nothing too bad. They are very confident they can REPAIR the valve and insert a ring to tighten the area up rather than having to a replacement. WHOO HOOO!

They, too, are amazed that Joel has no symptoms as the rupture is significant. His ejection fraction rate (how heart pumps blood) is around 35 percent and they’d like it to be around 55-65 percent. They want to move fast and get this corrected before more damage occurs. The repair should help improve his overall heart function.

We will be headed to Northwestern next Thursday, April 30th, to meet the doctor and surgeon. Joel will undergo another ECHO (to make sure no more damage has occurred since the last set of tests). Surgery will occur, most likely, within the first or second week of May.

While open heart surgery is a big deal, we are SO thankful to God that this has been caught before too much irreparable damage has occurred and that we have surgery as an option. Dr. McCarthy’s area of expertise is mitral valve surgery.

Joel will be in the hospital for 5-7 days after the surgery and then come home for 8-12 weeks of recovery of which he will not be allowed to work. He also won’t be able to drive for 4 weeks after his surgery and will be on Coumadin and low blood pressure medication during his recovery – with the end goal – to win him off over time.

Thank you for all of your prayers, support and love. Keep those prayers coming because they are working!

We are looking forward to getting this behind us so that we can enjoy the summer with our girls and hit all the fun chicken fry’s on Lake Springfield with Miller Lites in hand :).

With Love,
Michelle

PS – Melissa you are a GODSEND! Thank you for everything!!!

Things do happen for a reason...

This weekend my Aunt Carla called to see how we were doing. I expressed my frustration that things were moving SLOWLY and that I felt like a gerbil in a cage --spinning my wheel as fast as I could yet getting nowhere. I also expressed how I felt Joel was just a “number” to many people and likened our experience, thus far, to being in a herd of cattle.

Carla offered me some reassurance in saying all things happened for a reason and that God had us in the palm of his hand and we needed to trust in Him. Yes, I know this but I did need a reminder. Thank you, Aunt Carla. I felt so much better after our call.

Within 2 minutes of hanging up with her, I had received an email from my lifelong friend’s (Derek Fraley) fiancé, Melissa Shyrock. Melissa had read Joel’s blog and emailed me to see how we were doing. While I knew Melissa was in the medical field – I wasn’t sure to what capacity.

Through our exchange of emails, I found out that Melissa is a Physician Assistant of Cardiothoracic Surgery at Northwestern Medical Faculty Foundation in Chicago and she works for Dr. Patrick McCarthy.

After a few emails back and forth, Melissa and I had a long phone conversation about our situation. She immediately offered to help in anyway that she could.

Dr. McCarthy is specialist for Joel’s particular heart condition. Prior to accepting a position at Northwestern, Dr, McCarthy practiced at the Cleveland Clinic Foundation from 1990 until March 2004 with Dr. Lytle. Dr. Lytle is the doctor at Cleveland Clinic that Joel was referred to.

Honestly, I couldn’t believe I couldn’t my ears (or rather cochlear implants :)).

Melissa offered to get Joel’s records read by Dr. McCarthy for another opinion and I quickly took her up on her offer.

Melissa called me first thing this morning to let me know that she had spoken to the doctor and he was awaiting our medical records and would review them as soon as they received them. Talk about customer service!!!

I am picking up all of Joel’s records at 2pm this afternoon and will be FEDEXing them to Northwestern today. They should have them by tomorrow morning. The doctor will then review them and make a determination on if he thinks he can help us and then schedule us for a consult and more testing.

Wow! Had Joel’s records not been delayed in getting to CC, we would have probably already had an appointment there. Of course, we are not ruling out any options and if CC is where we need to be then we will go there. On the other hand, I can say, without a doubt, I know Joel wouldn’t just be a number at Northwestern. Melissa has offered to be our medical advocate and assist on Joel’s case. Melissa, thank you from the bottom of my heart, words can’t express my gratitude.


For those of you asking what you can do to help? Please pray that Dr. McCarthy has the experience, expertise and knowledge to help Joel.


Once again, I am reminded that things do happen for a reason. And, yes, Aunt Carla, God does have us in the palm of his hand.

Love, Michelle

About Dr. McCarthy


Patrick M. McCarthy, MD
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Medical Education: Loyola University Stritch School of Medicine 1980
Residency: Mayo Clinic-Rochester
Fellowship: Mayo Clinic-Rochester 1988
Fellowship: Stanford University Hospital 1989
Board Certification: Thoracic Surgery (Cardiothoracic Vascular Surgery)
Specialty: Cardiac Surgery
Clinical Interests: Valve Repair/Replacement, Mitral Valve Repair, Atrial Fibrillation Surgery, Maze Procedure, Aortic Aneurysm, Coronary Bypass Surgery, Hypertrophic Cardiomyopathy / Myectomy, Minimally Invasive Surgery

= This doctor accepts new patients. For important legal notice, click here

Request an appointment Electronically (new patients only)
You may also call Northwestern Memorial's Physician Referral Service at 1.877.926.4NMH (4664) to arrange an appointment
Biographical Sketch | Publications

Practice Contact Information
Website: www.nmff.org

675 N. St. Clair, Galter 19-100
Chicago, IL 60611
P: (312)695-4965
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Please contact the physician's office to verify that your insurance is currently accepted.
Biographical Sketch
Patrick M. McCarthy, MD has distinguished himself as both a clinician and researcher in the field of cardiac surgery. On April 1, 2004, Dr. McCarthy became professor of surgery at Northwestern University's Feinberg School of Medicine; co-director of the Bluhm Cardiovascular Institute; and the chief of the division of cardiothoracic surgery at Northwestern Memorial Hospital. In recognition of his continued, outstanding achievements, Northwestern University's Feinberg School of Medicine named Dr. McCarthy the Heller-Sacks Professor of Surgery on November 9, 2006.

Until March 11, 2004, Dr. McCarthy was the surgical director of the Kaufman Center for Heart Failure at the Cleveland Clinic. While there, he was the first occupant of the George M. and Linda H. Kaufman Endowed Chair.

Dr. McCarthy has achieved national and international recognition in the fields of complex adult cardiac surgery including, valves, cardiac transplantation, mechanical ventricular assist devices, coronary artery bypass, minimally invasive surgery, aneurysm repair and atrial fibrillation ablation. He has performed several thousand heart operations, averaging 400 per year. He has authored or co-authored more than 300 papers and 30 book chapters. He is on the editorial board of four medical journals and is a member and officer in numerous professional societies.

He was one of the youngest surgeons ever to be elected into the prestigious American Association of Thoracic Surgeons at the age of 38. He has given over 325 lectures, has been Visiting Professor 34 times and has lectured on six continents.

Dr. McCarthy developed the Edwards "MC3" three-dimensional annuloplasty system for the repair of tricuspid regurgitation. He also recently modified this three-dimensional design concept to develop a ring to repair the mitral valve called the "Carpentier-McCarthy-Adams IMR Et logix" ring. He has more patents pending and projects underway to facilitate other valve operations, minimally invasive heart operations, and catheter-based approaches to valve disease.

Dr. McCarthy is a graduate of Notre Dame and Loyola University, Stritch School of Medicine. He completed his general and cardiac surgery training at the Mayo Clinic and completed a special heart and lung transplantation fellowship at Stanford University Medical Center. He practiced at the Cleveland Clinic Foundation from 1990 until March 2004.

Hurry up and wait.

Sigh. So, we've been waiting and waiting and waiting for Joel's records to get to Cleveland. They were to get there Monday of last week. However, they didn't get there until Thursday. Dr. Lytle began reviewing them on Friday and as luck would have it...the films were bad and he couldn't read any of the records. So, they called the Springfield office and requested they resend the records. Stuff like this just irritates the heck out of me. To make the situation more unnerving, Dr. Lytle is out this entire week on vacation so he won't be able to read the films until next week. Finally, they won't let us schedule an appointment until the records can be read to ensure Dr. Lytle is the right Dr for Joel. I will post more when I know more.

Hope everyone had a Happy Easter!

Michelle

The I'm Sorry's

Hello. First, I would like to apologize to our friends and family who've reached out to us over the past few weeks and have not received a reply, update or response from us. We've been a bit overwhelmed and I am sorry I have not done a better job in following up with each of you. I personally want to thank everyone who has sent cards, e-mails and words encouragement; but, most importantly, for your prayers. Keep them coming!


Anytime I have new information about our situation, I will make a blog post. To follow my blog postings, simply click on the right hand side of this page and click "follow" and follow the directions on the screen.

The Beginning

Let me start from the beginning...every 36 months, Joel has to go for his flight physical so that he can maintain his private pilot's license. As such, in February, he went in for what we thought was a routine exam which included an EKG. Shortly thereafter, Memorial Hospital called and left a voicemail on our home answering machine (which we rarely check) and indicated Joel "might want to follow up with his cardiologist." A little weird but not alarming...if it were something bad, they would have called and spoken to us directly, right? Hmm. Still makes me wonder how many people get voicemails like we did and disregard them. Secondly, Joel doesn't have a cardiologist. But, with some nagging from me, Joel made an appointment Dr. Mishkel at Prairie Cardiovascular. We've gotten to know Dr. Mishkel as he is Joel Sr's cardiologist. He is really second none at Prairie. I like him alot.

The Gut Instinct

I decided to go with Joel to his appointment although Joel repeatedly told me I didn't need to go because it would be a huge waste of my time. In all seriousness, Joel thought he was going to go see him and would get his medical records signed off and be released that day. Those you that know me well...know that I have highly sensitive intuition. Come hell or high water, I wasn't missing that appointment. I'm glad I didn't ignore my instincts.

The Waiting

We waited for about 45 minutes before they called us back. We were the youngest people in the waiting room by about 30 years!

Once in the room, the nurses did their assessments and then said the doctor would be in. More waiting. More Joel telling I was wasting my time. After about an hour, Mishkel came in and said he was really glad to see us. But, really was not sure why we were there. So, we explained...flight physical...voicemail indicated we should follow up and it seemed natural for us to call him since had gotten to know our family through caring for Joel Sr. He quietly sat at his computer reviewing all of Joel's medical records electronically for what seemed like an hour...a few times telling me to be quiet. ;) Then listened to Joel's heart and did a few more assessments. At that point, he stood up and said that he needed to go see a few more patients very quickly and that he would come back because he wanted to give us his undivided time and attention. RED FLAG.

The Confusion

Joel and I sat confused. We had just done 8 miles of biking, jogging and walking on Sunday followed by 4 more miles of jogging on Monday night. Furthermore, Joel has been on a diet since October of last year and has lost over 40 pounds. He has never looked or felt better.

The Initial Diagnosis

Upon his return, Dr. Mishkel informed us that Joel had severe Mitral Valve Prolapse (MVP) characterized by the displacement of an abnormally thickened mitral valve leaflet into the left atrium that was ripped both on the anterior and posterior. The MVP was also causing Mitral Regurgitation (MR), a valvular heart disease also known as Mitral insufficiency or Mitral incompetence, which is the abnormal leaking of blood through the Mitral valve, from the left ventricle into the left atrium of the heart. This in turn was causing the left chamber of his heart to be enlarged. Note: Joel was diagnosed with MVP when he was nine and it's really never been much an issue other than him having to take antibiotics preceding dental work.

The Recommendation

Due to the severity of the valve rip, both on the anterior and posterior, Dr. Mishkel indicated that he felt that we might be better served at Cleveland Clinic where they had more experience in repairing severe valve issues such as Joel's. Okay, wait, back up. Prairie is rated in the top 2 percent in the nation for being a leader in cardiovascular. Huh? You can't treat him here? That really freaked me out.

Mishkel indicated that because of Joel's young age of 42 he definitely recommended that the valve be replaced rather than repaired. He wasn't even sure if it could be repaired but if so, the number one specialist for valve repair was at Cleveland Clinic. The advantages of repair compared to replacement are many...high success rate of returning to normal, less likely to have to take a lifetime of medications like blood thinners, etc. Enough said.

The Next Steps

In order to make the referral to CC, there were two more tests that had to be done: 1. a TEE and 2. A heart cath.

The Boring Medical Definitions

The TEE an alternative way to perform an echocardiogram. A specialized probe containing an ultrasound transducer at its tip is passed into the patient's esophagus. This allows image and doppler evaluation which can be recorded. The advantage of TEE versus an echocardiogram is that TEE's usually produce clearer images, especially of structures that are difficult to view through the chest wall. The TEE results would show us how badly the valve was ripped and if there were any hopes for repair.

The heart cath is the insertion of a catheter into a chamber or vessel of the heart. This is done for both investigational and interventional purposes. Mainly, they wanted to ensure that Joel didn't have any blockage. This test was being done as more preventive in nature.

The Testing Day

Joel was admitted to Memorial on last Friday morning to undergo the test. Talk about a long 15 hour day of waiting.

The Results

The TEE results were actually good news. After further diagnostic testing, results indicated that Joel's valve was actually only "mild to moderate" rather than "severe". The specialist indicated he felt Joel was a good candidate for heart valve repair rather than replacement. Momentary sigh of relief and BIG praise to God.

The heart cath results were not as good. This test indicated that Joel's heart was weak and was more enlarged than what they first suspected. Furthermore, they felt that it was more genetic rather than being caused from the valve. To explain, doctors initially thought that his valve was causing his heart muscle to be weak and significantly enlarged and that repairing it would fix the issue. However, now, they are not sure. To clarify, they are not certain that repairing the valve would be a good option as with any surgery there are alot of risks involved and they don't know if it will improve the condition of heart because it is not the cause or root of his problem. Rather than having one issue -- he has three.

The I Don't Knows

Basically, Dr. Mishkel indicated he didn't quite know how to clearly explain the test results because Joel has several very concerning issues going on that were "far and above his pay grade". I appreciated not only his honesty and true compassion but also him readily admitting he didn't have the knowledge to make further assessment. That doesn't mean I liked what he had to say. All in all, there are LOTS of unknowns and Dr. Mishkel has reassured us that they will do everything they can to figure out what is going on and get us to the right place.

The Referral

We are in the process of being transferred to Cleveland Clinic. The letter was faxed to our insurance company today and I talked to Mishkel's office 3 times as well as CC. Everyone has been so wonderful and caring. I love the secretary at CC. Joel will be seeing Dr. Lytle at CC. Mishkel's office overnighted all Joel's records today and they will arrive at CC in the morning. The doctor at CC will then review Joel's record and then a consultation will be scheduled. I will let you know via this blog as soon as we get a consult appointment at CC. It should be within the week. They are NOT jacking around (a little Michelleism for you) with any of this.

The Hope

The Miller Family Heart & Vascular Institute at Cleveland Clinic is one of the largest cardiovascular and thoracic specialty groups in the world, treating patients with severe heart, vascular, thoracic and esophageal conditions. We trust that Joel will be in the best possible hands possible and that they will have options for us. Most importantly, we trust in God and know He listens to our prayers. Please keep us in yours.

With Love,
Michelle