Patrick's Heart Valve Journal

Hello to all my buds at HVS.com. Today is the one year anniversary of my surgery. It has been a battle first just to survive and later, and continuing, to get my body back to its healthiest state. It has been the amazing support of family and friends, a kazillion prayers and two times receiving the Catholic Sacrament of the sick (which us pre VaticanII types still call the "Last Rites") and my stubborn Irish determination that has together gotten me through.

Forever I am in the debt of that spectacular team of Cardiologists, Surgeons, Radiologists, Intensivists, Nurses, Nursing Assistants, Respiratory Therapists, Physical Therapists, Laboratory Technologists, radiology Technologists, Home health nurses and therapists, Cardiac Rehab specialists nurses, physiologists and dieticians.
For those of you getting ready for this dramatic surgery THAT is the amazing team of people waiting to make sure everything goes well for you and you too will be able to write your "one year ago script.

Thank you Adam for making and maintaining this fabulous site and the fantastic book that is a blessing to us patients and especially our families.

Thank you dear Lord for this life and for its continuance. Blessings on all of you patients, your families and medical teams.

To all of you waiting in anxious anticipation: I'm now 6 months down and frankly feel wonderful. I am in better physical condition and more able to do whatever I want than for years. It is a difficult road. Don't let anyone kid you. It's gonna knock you down and ask you to get yourself back up. But it is totally worth all the anxiety and frustration, discomfort and physical challenges. You will need help, you will need support, you will need to learn to accept the loving help others give.You will need inordinate patience....with yourself and others. Nou will need to give in and go with the flow. You will need to listen to your body and go with it.
Damn I sound preachy and don't mean to just it is some times hard to get a dose of honesty when everyone around you is doing all they can to be supportive and positive. Yes positive is everything.You must have confidence and faith. But I found my surgical nurses words of wisdom helpful. This is definitely not going to be easy.....but you can do it...and it is totally worth what you work through. There is bright sunshine on the other side. You have for you brilliant, hard working physicians and nurses, the best of technology and most of all the kindest loving personal care. Take in all the love and support. Give thanks for this longer life you are being given. It is precious.

Merry Christmas to all. So blessed for the gift of life and health. I got a note from my surgeon Dr. Vincent Gaudiani responding to hearing how healthy, fit , and vigorous I was that said, " you see why I love fixing people every day....regards, Vince". Six months out now, I feel fully restored. But kind of funny how seriously I got into physical rehab. And true to my motto that anything worth doing is worth overdoing, I will be having arthroscopic surgery in three weeks to repair my torn meniscus. I just tell them that it is from an olde anti-war wound. That's sixties humor for ye of lesser years.

A Happy Christmas and Happy New Year to you all. I think we should say special prayers of thanksgiving for the gift of Adam's brilliant contribution to all our lives. God Bless you Adam!

I am so very happy with my outcome. I am now four months out and finished our cardiac rehab program Friday. I am doing at least 40 minutes of intense cardio workout each day. Took a six mike mountain bike ride on Saturday and a good hour and a.half hike through beautiful Garland Ranch Park, even up steep hills to scenic outlooks. The rehab program has gotten me back to a level of fitness that is the best I have been in maybe 5 years. Also, you all can only appreciate, I can sleep on my tummy again!! But, you may giggle at this but my red trophy heart pillow has become my security blanket. I'm like a little kid needing to cuddle up with it when going to sleep. When I awake in the night and find it missing I must immediately go searching if it fell to the floor or scootched somewhere in the bed. I laugh at myself.....but still go straight for my loovey pillow. Fortunately Trudy is not jealous but I lay with one arm around her and the other my red pillow. I'll have to take it up with a therapist someday, but I am a therapist....oh well!

Part of our rehab program included a great deal about dietary changes we all should be making and that has been somewhat of a challenge. Even though we always ate healthy, fresh, lots of fruits and veggies no
junk or much sneak food, we still had a lot to learn and changes to make. We have started studying food labels which really helped look at
the changes. We are following generally the Mediteranian Diet with some of the DASH diet thrown in for good measure. Low fat, Low sodium (read the labels and try for less than 1500mg of sodium/day) very difficult and we have learned to use lots of flavorings to counter the salt loss. Now after four months our craving for salt as well as salt tolerance has gone way down. We have invented a number of new recipes to accomplish that and have studied lots about the recommended diet. Lots less red meat, more chicken, fish at least three times a week ( I joked that now I would t die of heart disease but rather mercury poisoning ). We are lucky that we live on the coast and have fresh fish readily available.

So life is sweet! I'm fully back to my old self after four months even with a few complications along the way. I am so grateful to be alive and well still surrounded with my loving family. When meeting people and the start by saying," it's nice to see you". I often remark..."it's nice to be seen" . I am alive! And full of life!

Hi Everone,
Just checking in at the three month post-op landmark. WHEW! What a journey this has been. Where I am now is better than I have been for years. I honestly feel like my old self, with returned energy, strength, and endurance. It is truly amazing. There were many dark days and nights but with the blessings or the most amazingly supportive wife and family and the flood of prayers from every direction and denomination I have thrived. The power and strength gained from the prayers of friends, family, church family, cloistered nuns, even more distant acquaintances and Heart-Valve-Surgery clan, simply cannot be minimized.

So I pray that this little missive is an encouragement to those of you that are following me on this path. Although it was very difficult, requiring tremendous courage, limitless patience, and an attitude of positive and persistent hope. IT WAS TOTALLY WORTH IT ALL!

Now it is just about overwhelming gratitude to all the people that helped make a difference...even save my life. Shouted from the roof tops THANK YOU ALL!!!!!!

Well folks they pulled some more fluid off my lungs with another thoracentesis. Got a total of 2.4 liters off the left lung.. No wonder I was short of breath. Now I'm back to my pre surgery inspirational volume, feel like a million$ , started rehab, got my bicycle down to ride, went to a movie date with my sweet wife, went out to Sushi lunch with my darling daughter, headed off Saturday to Santa Barbara for granddaughters 6th birthday. Feel normal again TG and all the friends, family, church family, heartvalve surgery.com friends for all the loving support and prayer. It all works, friends!!! Pat

Thanks all for the kind words and encouragement. Getting better each day. Pulmonologist says there is still some fluid remaining and a small amount stuck I the space between the lobes. Since it seems to be decreasing we are just going to give it little time. Any intervention may present greater risk than benefit. A little time patience and exercise will help.

Patience! Isn't that the virtue that we have all grown I over these journeys. Couldn't we all certainly write treatises about that.

Went in for the thoracentesis. So happy that the interventional radiologist was an old friend. My wife and son, who is a paramedic, we're happy to observe. They drained 1.6 liters of fluid off my left side. What a quick way to loose 4 lbs. the procedure was very easy, no real discomfort except coughing your lungs out as the lung expands to fill the void. Damn good thing I didn't wait for my scheduled appointment or I likely would have been back in the hospital. It seems like what the system needs is a patient care follow up coordinator, perhaps an experienced post op nurse who is your ombudsman. One you know that this is who you call for questions when at home. One who is trusted by the various MD specialists and can answer concerns right away or arrange for you to get what you need when you need it. Really a team coordinator. I found all the nurses, surgery staff, pre op staff, ICU, and medical floor staff to be quite a team, working well together and with each other. The physicians however really were not a team but rather a collection of brilliant, unbelieveably skilled individuals who work In The same place. That lack of team work negatively impacts patient care. We got so many different stories about what was going on during post op that we never knew. Every time a different Doc would visit a little different take on things, like they didn't ever talk to one another about a case......and a few egos bump into one another, a little hospital or practice politics as well. Then try to navigate who to call for what and get through the front office staff to get an appointment. PHEW! TG for the Angels in my life who have connections.

Got X-ray results yesterday from my primary's patient portal that showed pleural effusion throughout the left lung. Ten minutes later an old friend who I haven't heard from in several years called. She is a Nurse Practitioner who practices near by. I told her I was disappointed but the first appt I could get with a Pulmonologist isn't for a week. She asked if I minded if she called in a favor with the Pulmonologist who is a friend of hers. Ten minutes later I got a call to meet him on his lunch hour in an hour. He read the X-ray and showed me that it was even worse than the radiologist report. He scheduled a thoracentesis to drain the fluid tomorrow. He says that it is a complication in about 5% of these surgeries and no big deal to fix but sometimes it can require multiple interventions and steroids.

A very frustrating part, and I think Adam has talked about it, is the communication and consistency in post op care when you are at home. There are so many specialists it is hard to tell who is in charge. First it is the surgeon until he releases you to the cardiologist or Pulmonologist but there is definitely a big hole he over who is overseeing your care and monitoring and coordinating your treatment program. Discharge directives are see this person in one week, this person in two weeks, another in three weeks and your primary care Doc in four to six weeks.
I think, like in every human endeavor when a team works on a project, patient, fire etc in retrospect it is always communication that is faulty. In my case this was true both in the hospital and once home. Patience Patrick, all will be well. Coughed all night....no sleep. Got a call in to the cardiologist this AM. I think it is now he that is to oversee my care.

Had a good checkup with surgeon. He had a number of suggestions. Quick course of antibiotics and cough med for the cough. Ace bandage wraps for the lower legs to cut the edema. He is confident the atelectasis will resolve in time but will refer to Pulmonologist. His part is done and he refers back to cardiologist and cardiac and pulmonary rehab. Got the new bed and a wedge from Bed Bath and Beyond and finally ......sweet sleep!

Tried side sleeping with a firm hug pillow to reduce the weight on the chest. That helped but chest a little tender this AM. Anyone else use a body pillow to side sleep?

Walked 1/3 of a mile this am with only one sit break. Had to sit on a bench by the river......it's required . Have a PT appointment this afternoon. Don't know if I have anything left.

God bless all the friends and family. We have yet to have to have to shop, or cook a dinner, or run an errand. Truly blessed
,

looking forward to some lingering questions. Dr. Spowart assisted Dr Gaudiani locally.

One lung lobe is still not inflated so that is número uno. It slows down everything with SOB.
What is the prognosis and program?

Sleep is a real concern and is really a matter of both comfort and simultaneous anxiety attacks. I would awake every hour finding myself breathing rapidly for no reason and a horrid aura of tension, fear, bad ICU memory surrounding. With concentrations
And relaxation I can get back to sleep but after two or three of those I've had it.and get up. I have been a psychotherapist who has treated lot of people for various anxieties, fears. Phobias etc. so I know the ropes. When it is yourself it is another issue. Getting a new bed mattress installed tomorrow so thAt should help as well..

Have a persistent dry cough which as you all know hurts just a bit. I'd like to address that.and finally the program for cardiac rehab

Has anyone has experience with post op atelectasis that did not resolve right away? I'm going on three weeks post op Monday and still have one lung lobe tha has not inflated.

Trudy is keeping our Blessings Journal. Here is her introduction:

"During the time period before, during, and after Pat's heart surgery, there will be many struggles that will no doubt leave marks on our memory.

To temper the difficulties, to help us stay focused on the positive, we are counting our blessings.

Looking each day for small pleasures, simple gifts, and tiny miracles........

We will record them here."

Home a week now, still one lobe of the lung hasn't inflated so SOB all the time. Walking outside several times a day, even and especially when I don't feel like it. Trudy has been making a daily journal of blessings we experience each day. That way, even on a hard day, we share with each other our contributions to the journal. It is so easy post op to focus on discomforts, irritations, irritability, the slowness of progress. The blessings journal helps keep each day positive. One hard thing is keeping people at a distance. We are lucky with so many good friends who have been prayerful and positive supporters but I find that it takes all my energy to complete well the activities of the day and visits though wonderful are a drain. It is so unlike us to decline visits or drop ins as we are well know to have an open door. Frequently have to be kindly assertive.

Five days post op still I'm ICU tubes out today (isn't that fun). But finally hope and strength from all of the prayers and positivism both of which are an absolute need. Note to firefighters: DONT BREATHE SMOKE. Firefighter lungs compromise this surger

Happy 4th of July to Pat's blog buddies. We are 5 days post op now and unfortunately Pat has developed pneumonia in both lungs and is still intubated. We'd appreciate hearing from any of you who had that complication. He is strong and his heart is doing well, but I'm sure you can imagine how discouraged he is. Thank you.

Good morning! This Is Trudy, Pat's wife. We are starting the 3rd post op day after Pat's successful bicuspid aortic valve replacement and double bypass on Monday. Yes, Adam, he was in good hands with Dr. Gaudiani and also Dr. Spowart. Pat is still in ICU with the ventilator. We're hoping, hoping it can come out today!! His spirit is READY....his lungs not quite. He has been so grateful for the support of all of you. And I have been reading Adam's book. (Pat bought it more than two years ago, but I tucked it away because I wasn't ready to read it. Now I'm reading it like it was a novel! Thank you, Adam.) We are blessed with 4 grown children who are lifting us up. Two have been with us since Sunday, another comes today and the last in a few days. None of them live in our town, but all are interrupting their lives to take care of us. It's very moving. I can't imagine doing this without all the support we have.
Dr. Spowart says our job at the moment is PATIENCE. So today I pray for that virtue.....but also for the darned breathing tube to come out!! It's driving Pat nuts!

For any of you that have surgery in the distant future I recommend that you spend the money on the high end insurance. I did knowing that this day would come. Well it came sooner rather than later and learned that the insurance coverage will mean little to no impact on my finances from all these expenses. We will see but it is an important discussion that I don't see much about here on this website

Day before the big day. A wee nervous but keep looking forward to having my old active strong self back. I am lucky two of my adult kids are coming today to help us with everything and two more will come later in the week as well. Feeling very fortunate. So many calls of prayers and positive thoughts, one can not but feel confident. Gonna go this AM and get my Mass at our little church and sing the Gloria with joy in my heart ......which will be even more joyful I. A few weeks.

I have a question for the post op community. We have a vacation planned to a quiet beach house for three weeks post op. Assuming the best how do you think that would go? Surgery had to be scheduled quickly for Monday.

Got all of the preop work done today so now just waiting for the big day Monday.

Got the stress test day before and the angio yesterday. More pre=op tests tomorrow and Surgery scheduled for Monday. Although the echo and stress ECG were unremarkable last time the symptomology got worse and the last isotope stress showed some ischemia and then the angio showed three different narrowings. So a bypass is in order and they will replace my aortic valve while in the neighborhood. Interestingly the cath lab cardiologist had trouble getting the wire past the valve as it was so stiff. I so look forward to a return to strength and endurance. So Surgery Monday morning. Same like you Jeanette triple and a valve.