Debbie's Journal

A very thankful, Thanksgiving, 2014!

December 2014, surgery was in September Northwestern, thank you Dr. McCarthy ! Enjoying the Christmas season!

I'm about 9 months out from mitral, tricuspid repair & maze surgery. I still have burning, deep itching pain in my sternotomy scar .It gets most uncomfortable/intense at night. Seems worse after lifting, or possibly swelling. Just wondering if anyone has dealt with this? Thanks

My mitral prolapse was diagnosed when I was 21(1986).I became symptomatic in 2006.Near fainting, dizzy,short of breath.I began seeing a cardiologist.He tried to explain my symptoms as dehydration! He said I should have an echo every 6 months.I had 2,insurance dropped me and 2 years later I went back.My symptoms of course worsened.Several episodes of severe pain and going to floor and then afib was so severe I ended up in the ER having cardioversion.My local cardiologist said it was time for repair.We discussed my options and He sent my records to Cleveland Clinic.I am not going to recount that ordeal.I have written about it before.My grandfather had Barlow disease and had valve replacement.He was airlifted to the hospital after days in a hospital undiagnosed.He spent weeks in rehab, but never made a full recovery.In 2006 my father(he had just had his 66 birthday),had mitral valve surgery at Little Rock Heart Hospital.My father never regained consciousness.He died 10 days after surgery(taken off vent)I cannot tell you how I wish we had known then what we know now! This site provides links and information that saves lives.How blessed valve patients are to have so much information. Having said that it can still be difficult to get the correct diagnoses and care! My purpose for writing this is to encourage you to be proactive and diligent. I cannot express my gratitude for Jane Kruse at Northwestern Hospital Chicago.I followed the link on HeartValveJournal for Northwestern.Jane returned my call and painstakingly reviewed my records. I had never spoken to anyone with such knowledge and compassion about MVP! She had me see Dr.Knight (electrophysithis).Dr.Knight examined me and had Dr.Bonow(cardiologist)come examine and discuss my case.It is a long story,but just understood the care at Northwestern was excellent.Jane Kruse RN.(coordinator for Northwestern heart valve clinic),Dr.Knight,(electrophysithis),Dr.Robert Bonow,(cardiologist),and my surgeon Dr.Patrick McCarthy are outstanding.I would encourage anyone needing diagnoses,surgery etc.to call Jane Kruse .You won't find a more knowledgeable and compassionate group of physicians! I have never met a cardiologist as caring as Dr.Bonow and how blessed I am to have had Dr.McCarthy repair my valves.

We are going home tomorrow and I am so excited! Tomorrow is our youngest 13th birthday! I still have fluid around my lungs,but am hopeful it will not continue to build.Changing some meds.,praying my incision closes soon. So anemic,but can't eat much.Nystatin for mouth! Yuck! This just has to get better.Dr.Bonow says eat steak.Funny for a cardiologist to say! Dr.Bonow is wonderful. Thankful to Dr.McCarthy and team.Thank you for your encouragement.

We finally got admitted to Northwestern about 10:00pm(long day)! No beds available on11floor, so we spent the night in ER.This was tough on Phillip who was exhausted! Immediately they tested INR,were not happy with over 7! They started giving me IVs of blood plasma, ended up needing 5.After more chest xrays. And cat scans, blood tests checking for bacteria ect. They determined that the right lung must be drained. it took until yesterday afternoon to get the INR. Correct. I had that done Wednesday. They also have been culturering my incision and feel it is just the external opening and draining. They're dressing and giving me antibiotics. Still not eating feeling nauseous, will address that today. The liter & 1/2 they drew from lung should help. Thank y all for your prayers! Dr.McCarthy, Dr.Bonows(and their staffs)

I had drainage from my incision yesterday,worrisome.Woke up this morning to more drainage. If we were not 10 hours from Chicago, I would feel better.My local cardiologist....not so much.Sure would like to hear from others who have had this issue

I am having some drainage this morning from my incision,have any of you had this?

We are an hour away from home.We left Chicago @8:30, long drive! As many of you have mentioned that your shoulders and back were more uncomfortable than any sternum pain.WOW, I wondered what helped? I have been using the heat patches to no avail . So excited to be home (almost)!

Couple of rough days, but that's to be expected Hope you all are doing well! Let me just say, my husband and son are great!

I wanted to let everyone know how wonderful Dr. McCarthy and his team have been through my time here at Northwestern. We could not have been treated with more respect or had better care. The nurses in ICU have attended my every need with gentleness and kindness. I am so thankful to have had such professional care. Highly recommend Northwestern.

Hello, my name is Phillip, Debbie' s husband. I wanted to give you all a progress report on Debbie' s condition after surgery. The surgery went exactly as hoped. Dr. McCarthy was able to repair both mitral and tricuspid valves....we are so thankful for this. The maze procedure went well and we are hopeful that in time this alleviates the A-Fib. She is presently in Cardiac ICU and doing well. Vent was removed about 4:30 p.m. and that was a great relief to her. She is up in bed and having ice chips and we are dealing with pain management. With no setbacks they are looking at late tomorrow to be in step down room. It has been a remarkably good day. For all of you who offered prayers or encouragement,I want to personally thank you for your kindness and support....it means the world to both of us. Hopefully, you will be hearing from Debbie tomorrow. Thanks, Phillip Cross

We are good to go for Friday (26)

Phillip was released from the hospital last Thursday.He has a tear in his calf muscle and a hemotoma.So swollen& sore! We are driving to Chicago tomorrow(91/2 hours) Not sure how that will go! Appointment with Dr.McCarthy Wed morning.

Things not going well at our house! Phillip(my husband) was admitted yesterday to the hospital.After several days of testing as outpatient they do not know what is going on with his leg.Blood clot or celluitis? Getting antibiotics and blood thinners. Guess what? They have heard heart murmur!

My Mom,husband and my 3 great kids! My father died in 2006.He never regained consciousness after valve surgery.

My oldest son and daughter

I know many patients with regurgitation are asymptomatic.I have episodes fainting/heart racing/chest pain/pain in arm,jaw&numbness in face,shortness of breath,severe headache.Sometimes my heart rate stays in the 200-240 rang and I end up in the ER having a cardioversion.I wondered if any of you have these symptoms?

I had a TEE,and an echocardiogram 2 weeks ago at Northwestern.When I go to surgery this time I pray I will wake up with mitral and tricuspid valves repaired and a successful maze procedure! "My flesh and my heart may fail,but God is the strength of my heart and my portion forever" Psalm 73:26

Surgery is September 26,Northwestern,Chicago. Dr.Bonow and his fellow Dr.Kahn are wonderful!

I returned to the ER. Springfield last Saturday after another episode of almost fainting/dizzy, pounding heart(very painful).I tried laying down,elevating feet etc.My heart rate just wouldn't come down.180-200.My face started feeling numb and I became more dizzy, nausea and light headed.My husband insisted going to the ER.They said they needed to do a cardioversion immediately.So IV, shot of blood thinner in the belly,and no bite plate! Don't forget to ask for a bite plate! This was my second cardioversion in 12 months.My cardiologist is on vacation.I saw him December 31.He said my echo looked about the same.He wished Cleveland Clinic/Dr.Gillinov would have done what they said I needed and repaired my valves and done a maze procedure for the AFib).He said when I am ready to see another surgeon to let him know.I will just say again how unfortunate it is when they call you in March and say they have reviewed your test,you need to schedule Surgery within 6 months.THEN after 2 days of testing at Cleveland Clinic being told by Dr.Gillinov that I needed surgery,go to the OR,& wake up(on a ventilator with all the lines in and guess what? They changed their minds! Sorry I don't feel well .I am so happy when I read of the many successful surgeries on here.I am often praying for many!I am trying to have a good attitude.We have a 12 yr old with developmental issues and I homeschool him.(our other children are 27&28!)My husband has had a heart attack& a TIA in the last few years.The stress of preparing my family for surgery last year and the expense of it all was difficult.Oh well I just needed to vent.I will be praying for all upcoming patients!

I would like to hear from others who had mitral valve repair at Northwestern in Chicago.I am several weeks away from my annual echocardiogram.Since my cardiologist has already recommended I get a second opinion I need to decide where.Thanks, Debbie

We saw my cardiologist yesterday.He was not pleased that I left Cleveland Clinic without a valve repair.

His reasoning is over the last few years test show my heart has worsened.TEE from 2008 until the one last month show left atrium and the left ventricle severely enlarged.Several echocardiograms both here, and in Cleveland show my mitral valve regurgitation at 3, tricuspid 2.My aortic root is 4cm.I have Barlow disease,severe mitral valve prolapse.Symptoms of dizzy, fainting, heart racing spells have(starting 2006)have progressed to emergency room cardioversion this year. Swelling in legs,e.c.t..I watched the Webinar video on the importance of Mitral valve repair that Adam posted.I cried.I have never heard so much information on the importance of repair verses replacement explained so clearly! My cardiologist does not understand why 1 test,administered under anesthesia,would outweigh all the other information( other test,symptoms) .I am at a loss as to where,or who to go now.Would like to hear any thoughts you all might have.My father and my grandfather both had Barlow valves disease.Both had replacement surgery.My father in 2006, he never regained consciousness after surgery.My grandfather lived 2 years after his tissue valve.I still have an 11yr old at home. Create in me a pure heart, O God, and renew a steadfast spirit within me. PSALM 51:10

leaving for Cleveland, saying goodbye to

Last Wednesday at exactly this moment we(Phillip,Josh,& I) were walking in to sign in for my surgery.I was pleased to be so calm! On Tuesday afternoon when we met with the surgeon,I was pretty sad to hear I would not be having minimally invasive mitral valve repair.Instead he said I needed a full sternotomy.He told me he would repair the mitral(1-4,it was a3), repair the tricuspid(2),and do a maze procedure for AFib.When Cleveland Clinic called in March they told me I was a good candidate for robotic repair.Of course we were disappointed(we have an 11 year old)I wanted the best outcome, so of course we agreed with the surgeon. When I woke up in a few hours I was on the vent, lines in arms,neck,chest,catheter e t. I was in so happy I had made it! Finally,4 months of worry behind us! You can imagine how I (and my family) felt when I realized I had not had surgery. So many of you recommend getting a second opinion.We did not heed your advice.Our family would strongly recommend it now.I trust all will work out,but it has been so stressful.

I am telling you my situation not to discourage you in any way about Cleveland Clinic. However what happened to us seems bizarre. I had many test all day Monday andTuesday.We met with the surgeon. It was a brief meeting. He explained that my mitral regurgitation( from 1-4) was a 3.He went on to explain the tricuspid was at a 2 and he would repair that also.He told us about the procedure he would do for my Àfib.We asked a few questions. The last thing I asked, Dr.do you feel this is the right time for me to have this surgery? His answer (quoating,Absolutely. Yesterday you saw a post from Phillip when I went back. I was in the O.R.moved to the table, lines placed in neck & arms.Dr. came in gathered around me and he goes over again what he was going to do.He told me I would be fine.Spoke to the anesthesiologist and off to sleep I went.I woke up on the vent, some lines in place a few hours later.I had NO surgery.According to the brief phone call Phillip got, the last test done before beginning surgery showed my mitral valve to have less regurgitation than thought. The nurses told us they had never seen this happen. We are still shocked.

My name is Phillip. I am Debbie's husband and will be updating her heart journal until she is able to return. . Cleveland Clinic is running on time this morning and took her back for preoperative on time. Will update as soon as we hear from doctor.

Not what I had hoped to hear today.I cannot have a minimally invasive procedure.I will have mitral valve repair(hopefully),tricuspid repair and a maze procedure for AFib.A traditional sternotomy.Looking forward to "the other side" ."For I am the Lord your God who takes your hand and says to you,"Do not fear!" Is.41

Cleveland Clinic is super busy! I have been late for every appointment.Lines to check in are usually 30 minutes.Everyone is really patient and nice.I am nervous,hard to believe surgery in 48 hours.

Very long drive yesterday to Cleveland Clinic.About 13 hours.Testing begins tomorrow,surgery Wednesday.God is our refuge and strength, an ever-present help in trouble Psalm 46

Still making and doing list.Spending time with Jackson,lots of hugs. Our oldest son is flying in today to make the trip to Cleveland with us.We have not seen him in the summer in the last few years.He plays guitar for a country artist and they tour constantly.He is off for a few days, and will be so helpful to us.My daughter is a retail manager and cannot get off.Praying for peace and healing for all. Proverbs 17:22 A cheerful heart is good medicine,but a crushed spirit dries up the bones.

Be of good courage, and He shall strengthen your heart, all ye that hope in the Lord. Psalm 31:24 I found much comfort in this verse. So many blessings to count this week. June the 26th,the day of my surgery is Philip's and my 31st anniversary.We leave Saturday for our long drive to Cleveland.

I have read so many people post as they wait,and prepare for surgery.I feel like I can hear the anxiety in their words.I pray about it,and try to rely on my faith to give me peace.Having said that,I am nervous,and yes fearful.I have had 2 surgeries in 2 years and while they were no where near as serious as valve surgery the weeks spent in the hospital are fresh on my mind.I think some of the anxiety comes from not being sure which type of surgery I will have,some from dread of the vent,pain management.

My symptoms started as fainting/blackout episodes in 2006.They got much worse in the past year,also Afib has gotten much worse.Had cardioversion(emergency room) in Jan. Since then have felt much worse.Taking Multaq & Cartia.Hoping to have minimally invasive repair.My father died in 2006 2weeks after valve replacement surgery(he was 66,my grandfather died in his 70s after his valve replacement).Would like to hear from others who have had robotic mitral valve surgery at Cleveland Clinic.