We are heading home tomorrow!!!!!!!!!! TWO WEEKS to the day of his surgery.
I didn't update because for the forty-eight hours after my last email, it was full of ups and downs; changing every hour. There were three "almost goes" for the cardioversion then cancelations. It has been probably the most agonizing, frustration loooooong five days of a-fib we could have ever imagined. Nine total days of A-fib.
BUT....yesterday (thinking he had to wait till today for the procedure) they worked him in and at 1:00 PM he went for the TEE before cardioversion, then...figure this...as Norb is waiting for the cardioversion to start the machine breaks!! But at 1: 45 I see him being rolled toward his room, sitting up with two big thumbs up!!! He was even happier when he got in the room and saw Dave had come up. We are blessed with a wonderful family.
His heart went right back into rhythm with a very low shock and he only had to have it once. His heart rate has maintained perfectly for twenty-four hours. The wires from his heart have been cut ( no outside pacemaker,) he has had his first full shower in two weeks. He is eating a REGULAR meal now, and we will head to the rooftop to get him his first outside fresh air in TWO WEEKS!!!
We will head home sometime tomorrow morning, stopping every hour for a walk to prevent blood clots.
Lastly, we just can't thank ALL of you, and the folks you forward the emails to, and the people you spoke to for all your prayers, support, calls, texts, emails, cards. Norb's heart is stronger and healthier because of your support that got us through thse past fourteen days that were suppose to be four or five. We look forward to seeing all of you in the not so distant furture.
PLEASE continue to pray prayers of thanks for all the wonderful Clevlenad Clinic caregivers and the wonderful missions they have accepted. We truly believe Cleveland Clinic is the reason Norb now has his life expectance back.
ALL OUR LOVE AND ETERNAL THANKS,
Thank you, Jesus for prayers answered.
Norb and Cly Denna
It has been forty-eight hours since the last update, and it has been a medical and emotional roller coaster. Thank goodness Norb and I had Bert and then Anna here to support us. I won't bore you with all the different scenarios and medications they have ttalked about tried.
Here are the facts:
1. Norb's heart rate has been at 120 -129 for forty-eight hours.
2. It has not converted by itself.
3. He was started on a heparin drip today at 3:30.
4. Every six hours they will do a blood test ( he just had the first one) to see the saturation of heparin in the blood.
5. When his blood saturation level reaches a certain range and maintains it for two blood tests cardio version will be scheduled
Cardio version is a procedure where they will sedate him lightly, ( similar to the sedation when you get a colonoscopy) and give his heart a shock to HOPEFULLY reset the rhythm. Sometimes they have to do it more than once at different levels. We are really praying this is the answer.
If this is NOT successful ,than a pacemaker will be considered. We are not going there yet.
A really special thanks to Doc and Dana Delaney who stopped by for a short visit today on their way home from Niagara Falls.
Your emails, texts, voicemails keep us going and remind us we are in your prayers. Perhaps as you go to Mass tomorrow, or say your next prayers you could thank God for all the blessings he has bestowed on Norb these past ten days and all the prayers he has heard and answered.
First I want to say a HUGE thank you to everyone who has called, texted or emailed. Your prayers, thoughts and acts of kindness have meant the world to us, and even though you are distant we feel your love and support. Those are NOT just words, and as Norb and Dave would say, "It is a true fact!"
It has been hard to write because things change in such a short time. I don't want to give you info and then it is different in 5 min. That said, as I write this I know that in less that three hours we may have some other thing going on. I've been trying to write this for forty-five minutes and things have changed in that time. Also, there have been SIX people in the room. (vitals, cleaning, Communion, Mended Hearts, EKG, diatary,) Just the crazy way the entire twenty-four hours goes...then it repeats, plus more.
Norb is feeling better, getting stronger and his appetite is picking up. He listens to all your voicemails, and I read him all your texts and emails when he feels up to it. They mean everything to him (us.)
The just of it is that Norb's heart is not in rhythm. This is caused by swelling from the two surgeries. It sounds worse than it really is. A-fib is something that happens many times with heart surgeries (40%) and is not life threatening. It is just a nuissance. Normal heart rate is 60-100. Norb's rate varries between 40 and 180. When it gets up over 130 you can see it beating in his chest and neck. It is very tiring for him. His blood pressure is under control and normal.
They have tried several meds, there has been discussion about cardioversion ( the shocking of the heart to return it to norman rhythm,) possible pacemaker, using a combinatin of meds. The current theory is to continue to wait and see if they can get the corret combination of meds. He continues to get physically stronger each day, he is beginning to eat more. He has lost ten pounds since the surgery in addition to the twelve pounds he gained during the surgery from the two periods on the bypass machine.
He looks great.
Bert returned to Cleveland last night and will stay until Friday evening. If we are still here, Anna will come up Sat. Absolutely could NOT have done this without Bert, Amy, Mike and Anna. It lifts Norb to see the kids. He and Bert are currently watching the British Open and making LOTS of comments.
Also wanted to give you some information his surgeon, Dr. Marc Gillinov ( the rockstar of cardiology, but a very down-to-earth, easy going guy - Norb loves) came in on Tuesday and shared with us. He said after the mitral valve repair, he was back in his office and his pager went off directing him to return to the OR. He said he couldn't figure it out, because he thought everything went really well. There were two other cardiac surgeons finishing the surgery. An echocardiogram was done and they saw a mass on his aortic valve. Dr. G decided to go back in to take care of this, because it was the size of a pea and would continue to grow, and would have eventually caused a stroke and/or Norb would have been right back up here in a year or so with another heart surgery. He said after the surgery the three surgeons looked at all the previous records, including the ones from Dr. Surish in Edgewood, and the growth wasn't evident on ANY previous pictures. He then said, "There must have been intervention from somewhere" and he rolled his eyes to the ceiling.
We told him we knew of a parish prayer network, a group of thirty-seven priests in Philly, two religious order,and too many folks to count all over the country and Germany who have been storming Heaven. Our God is good. He has given strength, guidance, faith and love when he knows we need him.
I will try to be more diligent with the updates. We love each of you for caring.
Been a bit busy and in reality, just too tired to stay up to post. I slept in NOrb';s room the first night asnd realized I needed to rest also, and he is getting great care. Bert and Mike and Anna were so supportive and went home Thurs. and Fri. Couldn't do without them. I'll post seperately about our nine hour wait during Norb's surgery,.
I'm doing laundry...actually all the pillowcases and liners I brought with us for his pillow. He is sweating profusely. He normally sweats from his head, but the meds have trippled it.
Thanks to Thomas ( I believe) who suggested we try to get a room that was NOT facing the interior walls. THANKS SO VERY MUCH. Those rooms are so depressing. When I found out where he was being taken I went directly to that floor and sure enough it was on the inside. I went to the nurses desk, and asked she found him a GREAT room facing the front with large windows and at the very end of the floor.
The days have been LONG for him. The meds wear off in about two hours and he gets very anxious from the pain. He is recovering, but slowly. Today we found out why. He was placed on bypass TWICE. It was realy two seperate operations. They were finished and he was off bypass when they found the mass on the aorta and Dr. G and two others decided to go back in so as to avoid another operation later or a stroke. We are very thankful they did;
Also, Norb still has the V wires through his chest wall from his heart. Seems his S or V or some knid of node that sends the electrical charges just isn't in rhythm yet. Once this kicks in they will remove the wires and then he has to be here one more day.
The Lasix is working. He is down three lbs.
It will be at least Tuesday before we can head home. I assure you, he is not ready to make a 4 hour ride home. He is eating better ( although he has a comedy routine about how bad the food is...Today he had a hard boiled egg he said had never seen a chicken.) Of course he is on a NO salt, low carb diet and his liquids are restricted. TOUGH, But he is eating so he had that first BM ( requirement to go home.) He is doing his breathing exercises and walking the route as usual. VERY tiring for him, and this is a man who walks 3-5 miles a day 3-5 times a week.
Heard something in the family lounge today from one of the NINE relatives camping out in a man's room who had heart surgery two days ago, " Bubba is a commin' but he went to get Pappy that jerkey he likes."
I live in Ky and very proud of my Appalation heritage, but even we in KY know jerkey is NOT a heart-healthy snack, much less a GIFT to bring to a patient, Just funny...They were also second-guessing everything the nurses were doing and cussing them out and complaining about them. Just not appropriate people.; Of course, the break-dancing to a loud boom,-box in the ICU waiting lounge just didn't seem appropriate either.
Willl try to keep you up on developments.,
Know I am thinking of all of you headed to the crest of the climb. Hope to meet Connie this week.
It is 11:00 AM and Norb is doing EXCELLENTLY. He was told in the operating room before surgery that they were going in through the chest.
His very attentive nurse made his night as comfortable a possible. Of course as all you CCF alumni have told us there is NO SLEEPING for over 3 minutes in the ICU. But we were ready with all the amenities you all have suggested...especially the noise canceling headphones. He has all the typical pain meds. He is using the pain pump. This is a surprise, since he doesn't like to take meds, but he is certainly pushing the button. Right after they removed his breathing tube last night he wanted to know where his water pump was....the thirst has been one of the biggest problems.
Hi is up in a chair and anxious to get into his own room,which we all are for him, then he can really begin to heal, rest and move on to the goal of FULL recovery.
Norb has taken the meds made available to him. He has the pump, and his nurse....who is only nursing two patients is constantly at his bed or within ear and eye shot AT ALL TIMES really helps in controlling the pain. Both of his nurses have been such trained,experienced professionals that they KNOW when he is in pain. He doesn't have to tell them. His pain has been no higher than a 4 on a 10 scale.
I just can't say enough about his care. The attention is unfathomable. It is so go good I actually went to my room and slept for 4 hours last night. Have had full access. We have felt informed, secure, and peaceful.
Norb is experiencing the normal COMPLETE LACK OF ENERGY that his surgery. We know this will return.
He has been VERY emphatic that he does not want visitors today. Now, those of you who know Norb know what a people person he is. He NEVER wants to be alone, but it just zaps his energy to talk. His anxiety level has been elevated, because in Norb's style, he has been worried about the gentleman on the other side of the curtain who does not speak English, has no one with him, and has been desperately trying to tell people things. His cries just break your heart. They have someone on the way to interpret for him. But, this has bothered Norb that one of his fellow human beings was in pain. The Spanish priest who came in today to pray with us hadn't finished Norb's blessing and Norb was asking him if he could be the interpreter or the patient next door. It is just his nature to help others.
Right now he he just wants to rest. I know he will feel differently by this weekend.
Will post more after he gets moved to a peaceful room. BREAKING NEWS....they are moving him to a room in about an hour.
More later. We send you the same blessings you have been for us.
Norb and Cly Denna
Hi HVJ family. It s now 10:45. They are taking the tube out right now.
Backtrack since 3:30:
9:30 - we arrive
10:00 Norb goes to prepare
12:05 he is taken to surgery
2:15 they made the first cut
3:55 he goes on bypass
5:45 he goes off bypass
7:30 he is closed and goes to ICU
8:45 we get to see him
Here is what happened and we FEEL SO BLESSED
pre-op scans showed too much calcifications to use the robot so they used a mini sternum incision
( mini??? looks like 5 plus inches) Miracle Man Dr. Gillinov repairs the mitral valve and they do an echo which shows the valve is working well.....
THEN THEY SEE... a growth on his aortic valve about the size of a pea. It is benign. They removed this. If they had not found this it would have continue to grow and eventually caused a stroke, or Norb would have been right back up here next year with another surgery.
I've been praying that God would watch over Norb and guide the excellent team. I feel all prayers have been answered, because if the calcifications hadn't shown up and they went in the side and they used the robot they would have seen the growth AFTER and would have had to open his chest also. So all is good.
Dr. G said he rarely sees this and both of his surgeries had it today.
All his vitals are excellent.
It changes our schedule a bit because he will be here until at least Monday .
Thanks to all for all your support. We definitely made the correct decision on CC and Dr. G. Highly recommend both.
I'll continue to post updates in the days to come
Gotta go see my Honey now.
Good night and sweet dreams to all.
Blessings to all...feel like we got a big one today.
It is 3:30. We arrived at 9:30 and they prepped Norb. The four of us had a blast with Dad's shaved chest and booties and of course the "designer" hospital gown. LOTS OF LAUGHS. He was a bit nervous...as nervous as Norb ever gets. Still LOTS of laughs.
Norb was taken to surgery at 12:06. It is now 3:40 and the heart-lung machine is just about to take over. Dr. Gillinov is beginning the repair of the mitral anteiror leaflet, a couple of the cords, and installing the supportive ring around the valve. We haven't received the official page yet, but the FABULOUS nurse coordinator said we were very close. The surgery will take another 2-3 hours and the we will talk with Dr. G. Then we should be able to see him in the ICU in about another hour.
I will update this after we hear anything,
Thanks again for all your support. We are at the PEAK of this mountain and I can see the end.
Twas The Night Before... And... Norb is sleeping!!
Journal posted on July 10, 2012
It is nine hours until time. TIME TO GET MY NORB'S HEART FIXED!!!! This time tomorrow we will be getting on with our fabulous life.
Met with Dr. G this morning and I can't put into words how great he was. Linda D was right.. He is the ROCKSTAR!!!! Calming, patient, reassuring
( although, no matter what he says, I am STILL NOT going to let Norb drive home.) They ganged up on me.
Norb was suppose to have an additional kidney tesst this morning, but it was canceled because they reevaluated the data. He was told he was going first and he was very happy. About 4 we got two calls. One call told him he had an infection in his nasal passage and had to go get the prescription for the noise paste. Then the bomb that he wouldn't be going first because of an emergency re-do.
We've had a wonderful day in Cleveland touring a WWII subarine that is FULLY intact. We did about a 3 mile walk. Really enjoyed all the sites in Cleveland. Looking forward to more AFTER his heart is 100%.
The later time ( Norb reports at 10. ) actually works better for us since Bert and Anna arrive this evening, and we walked in Cleveland, had so much fun at dinner, and played for about 30 minutes in the casino. We got to the Suites about 11:15. Norb did the disinfectant ( yuk smelling) shower and his nose paste. Will use them both again in the morning,
He is now resting(I know because I hear him snoring. We will meet at 9:15 tomorrow for the 3 minute walk to the clinic, just to make certain we are on time for the 10:00 appt. Gotta love him. We shouldn't be there anymore than 15 minutes early, so this will give us time to pray together.
If you think of it, and you are a praying person. please consider it tomorrow morning between 9:15 and 9:30. Never hurts to storm Heaven. We STRONGLY believe in the power of prayer.
Anna will post tomorrow, but it will be in late afternoon.
Thanks to everyone for all your well wishes. We coudn't have made it without you.
It is time to rest. Long day ahead of me tomorrow.
So I say to Norb, "Rise and Shine, Honey, you have TEN appointments today." YUCK!!! Arrived at CC 7:40. Went NON-STOP until 5:10..Our lunch break was taken up with waiting because some deskie didn't scan him in and he SAT FOR 90 MINUTES. This ate up all the time we were ahead of schedule and then some. I think two heads rolled when I finally got some attention and they discovered the error on the part of the person who was suppose to scan him and also didn't check the procedures he was to have. Also the lab peson messed up his appt. Just shows, the sqeeky wheel gets the oil, because when he called me out front and was concerned he wasn't going to make his 11:00, and told me had been sitting...I went into action. Suddently TWO people called his name only three minutes after I "discussed" it with them. After that things continued smoothly.
The folks in pre-op and Dr. Bhargava are just TOP NOTCH!!! There weren't really any surprises since we had really done our homework and all the info in Adam's book ( INVALUABLE TOOL) and the HVA community had us prepared.
Will meet with Dr. Gillinov tomorrow morning and one more kidney test.
EVERYONE at Cleveland is really great. I've forgiven the mistakes, but when you are a bit on edge you don't need this type of set back. Forward to better things.
We are both TOTALLY at peace with everything. It was funny that all day everyone just kept trying to get Norb to say he was having symptoms, but he just hasn't had ANY. It became laughable. An intern asked norb how many sheps he could climb, and his reply was, "More than you!." It's true.
Our awesome son (Bert) and fabulous daughter (Anna) will make the four hour drive from Northern KY to Cleveland tomorrow and we'll have a family dinner and soon arrive at the summit of the mountain Norb has been climbing. It was a bit rough the past 72 hours, but the HUGE number of emails and texts seem to give us the strength to continue. It truly is "Wind Beneath Our Wings" lifting and giving strength.
We found out Norb's heart is in EXCELLENTcondition and most of the pressures and rates are normal. It's just the floppy valve. Incidently, this is NOrb's new nickname from Anna, our daughter.."Ole Floppy Valve."" We're gonna get it fixed in about 36 hours.
I'll post more tomorrow night and then Anna will probably take over.
So many of you have been so giving with answers and knowledge, so if we can pay it forward to anyone, PLEASE ASK.
Special thanks to all who answered our questions conerning robotic surgery. This is what they are going with.
Can someone please let me know how I can invite about 50 folks to read my journal? What should the website address be so they can subscribe and receive an email each time I post? Thanks for your time.
Actually it will only be a four hour drive, but we leave in about sixty hours!!! Hope everyone had a great 4th. We live in such a wonderful country with fabulous health care. We have great friends who have had a party for over thirty years and it just keeps geting better. Norb stayed until after midnight. Lots of fun!!
Norb continues to show NO symptoms. He put up the tent for the party, took it down, carries chairs up and down stairs, weed wacked our entire 500 foot drive at the edge of the woods, has our home looking like a park. This will be hard for him when he comes home to NOT get on his tractor mow and edge things, and lift etc.
Many of our friends are sending cards, stopping by, praying and showing their support and concern. Each individual sentence of support means so very much. Several folks have noted that Norb and I seem so calm and at peace. I think we are. Don't get me wrong....I'd give ANYTHING if he didn't have to go through this but am so thankful there is a fix and he will have his normal life expectancy back. We feel confident and just are ready.
Norb's family has never had the strongest hearts, but with medical advancements his cousin lived an additional 25 years, and now that Norb needs help he can get it. Plus, we have very high hopes that it will be accomplished using the robot. Tonight I overheard Norb on the phone explaing it to someone and he said, " They shoot me with five bullet holes and repair it like that." He has such a great attitude.
Here is our plan:
Sunday, Mass, breakfast with our kids, drive to Cleveland. We are staying downtown for Sunday and Monday because I didn't want him staring at CCF building for 72 hours before the surgery. We'll get out and enjoy Cleveland. ( Any suggestions?) Monday are all the pre-op appointments ( 9 or10 of them.) Tuesday morning we meet with Dr. Gillinov and have the rest of the day free. The heat should break, so we'll probably see the submarine they have and who knows what else. Tuesday our children will come up. Don't know if he will be first or second. Hoping for first. Norb doesn't sleep well anyway, and I'm certain he won't Tuesday night.
I want to say a VERY heart-felt thanks for all the support you've given me (us) over the past few months. Keep it comming.
Smiles, Norb's wife, Cly Denna
PS - Someone asked me if his name was misspelled. His name is actually NORBERT - very German. His father was Norbert and our son is Norbert (Bert.) So, it isn't a misspelling. His name is NORB. hahaha Norb and Cly denna = sounds like a hardware store!
Just returned from a great family vacation getting out of Sarasota (Siesta Key) just in time to miss storm Debbie. Left Sat. evening from Tampa airport where lots of folks were trying to get out Lucky to have confirmed seats.
Decided to check for any voice messages on our home phone and when I heard the first of four messages saying, "This is the Cleveland Clinic and we need to speak to you about Norb's upcomming procedure" IT HIT ME HARD. They only wanted to verify info, but WOW...a real surge of emotions. I didn't tell Norb until we got home, (am I being too overprotective?) He's fine with all this. Although last night was the first time he actually said something to the effect of "I'm not looking forward to this."
Spent some time today speaking to CCF and our insurance to be certain all the ducks are in a row. Looks, like we are ready to go. (financially)
After reading more entries I decided to call Norb's cardiologist and find out EXACTLY what his diagnosis is and all his numbers. Here is where I NEED HELP.
Norb has an "eccentric mitral regurgitation." His echo showed, " flail of anterior mitral leaflets with eccentric jet" (What does this mean?)
His EF ( ????) is 60% with 4+ regurgitation extending into pulmonary vein." ( Anyone able to intrepret this for me?)
Don't know what the following mean. ( can any one help?) RA=70% PA=70% FA=90% cardiac output is 6.1 (out of what? good or bad?)
Thanks to all for your continued support.
Was so good to follow Chris and Samantha and see how well he did. You are BOTH inspirational.
Happy Health to All.
PS. I'm trying to get his blog name changed to Norb's Wife and our hometown is Cold Spring, KY which is a surburb of Cincinnati.
I have been reading almost every post on this site for almost four months now to prepare myself to help prepare Norb, my hubby of thirty-seven years. I've been taking notes. I have categories of the following: questions to ask, medications, items to take, what to expect, abd don't be surprised by.
I realized tonight that we are five WEEKS out now. Wow the past four months have flown by!
Norb still has no symptoms ( I don't think.) He is a very hard physical worker although retired for ten years. I'm anxious to see his stamina this time next year. He volunteers at a local food panty, walks, gardens, golfs, visits the sick, and absolutely enjoys life to the fullest. We are blessed with two wonderful children who made great decisions with their spouses. We are a close knit family.
Norb could have had this repaired in May, but we have a vacation of family and friends to Siesta Key, Florida June 16-23 and he wanted to be able to play golf. The doctors felt he could wait until July. So, we will head to Cleveland July 8, Have the eight or nine appointments on July 9, meet with Dr. Gillinov and others July10, and the surgery is scheduled for July 11. The plan is for him to be in the ICU over night
(Will I be able to stay with him, or are you only allowed in ever so often for a short time? Will others be able to go in the ICU?) Hopefully he will be discharged Sunday, July 15. We will stay in Cleveland until Wed. July 18 for a one week checkup and then head south four hours to home. Norb has already started lobbying for a shorter stay.
I have reservations at the Suites so IF I can get him to rest after the surgery he can nap in one room and I can still be there with him. He is a VERY light sleeper.
Norb had his first dental check-up today. I had a cleaning last week and he told me to take the paper and just get it signed since the dentist is a relative. Hahahah...that tells you what kind of patient he is going to be. He has a mouth full of crowns and they worked on him for 90 minutes. He told me it hurt
(which he NEVER admits) but of course, he didnt' say anything. I'm working on preparing him to take the pain meds so as not to stress his body so much. We'll see how that goes! I'm convinced he would do al of this without meds if he could.
Those of you who have been to CCF and have time, can you tell me what their policy is about visitors. Norb doesn't want anyone there, but of course you will NOT be able to keep his children away. He just doesn't want to inconvience people.
Norb is blessed with many, many frinds. His best friend is the same friend he had when he was six! We sit at all the home Xavier basketball games with 12 of his friends fromhigh school and college. I honestly don't know ANYONE who doesn't like him.
He has a fabulous attitude concerning his upcomming surgery. "It is something that has to be done, so let's do it."
Seems this is going on too long, but it is such a blessing to know you aren't in this alone. I've prayed for each of you that I've followed on your journey, and I've given thanks for all who have so generously shared. Now it is my time to share.
A special thanks to Tom who has recently posted such detailed synopsis of his recovery. I really feel I know how and what to be prepared for to make things easier for Norb, but wait a minute....are you ever REALLY prepared for this?
I am Norb's wife. He will have a mitral valve repaired (by robot) in Cleveland with Dr. Gillinov in July 2012. We are very confident in this decision. Cleveland has been very helpful, but nothing like hearing from those of you who live it. We are five months out and would really appreciate ANY and ALL advice. What can we do to make this the best possible?
Norb is 66 and presents with NO sysmptoms. We are very active. His cardiologist has been following a murmur for several years and now we have decided to get it reapired now. It has to be done, so why wait.
Any advice for Norb? How about where to stay in Cleveland. They give you six posibilities. Any recommendations?
What a blessing this site is. Thanks, Adam!!!!
PS. What questions do you wished you had asked, but DIDN'T before your surgery? Thanks again.