Misti Blu's Heart Valve Journal

Laura Hansen posted a note for Misti Blu that says: So sorry to hear that you have to go back in for another surgery. I'm four weeks post-op today and I don't know if I could do it. They have minimally invasive surgery in some locations and that might be an option for you? Northwestern Medical Center in greater Fort Lauderdale does a lot of minimally invasive procedures.

Go you! -- DVB

Thx misti. Will keep your phone number. I'm only 3 weeks post so don't wanna screw anything up yet. But will keep it in mind. Especially when I go bald to the gym
Glad it was ap easy for you. Best wishes. Nancy friedman. Stlouis.

Hello Misti:

I had oprn heart durgery 4 months ago still on disability. Can you tell me more about having the wires out.

if yiu have a chance call me 909-732-5719
My name is Marina..

thank you

Yes. If you can share the downtime on the revoval of the wire that would be super. Did they hv to recut you open again ? Detail please ! Thx

Nancy Friedman. St Louis mo.

Hi Misti, thanks for posting again. It is really helpful for those of us new to recovery (I will be 4 weeks post op, on Thrusday). Glad you are doing well. Sorry to hear you had pain, hopefully with the wires out things will be better now. Best of luck to you. - Mitch Friedman

Hi Misti Blu....good to hear your progress and that you are good. My sternum wires pinch me too. I did not know there was an option to get them removed. How long do you think your downtime will be after this procedure? Let's chat about this.

Wow. Interesting to know we can even have that done. Very interesting Thx a lot. Not sure where in fla you are. I'm 3 weeks post op & recuperating in fla keys. Nice here

Thx again for good info ! Nancy Friedman st Louis mo. 2/9/12. AVR& 1 bypass

Hey, glad to see you're doing well. I'm coming up to 6 weeks post op, and I'm a similar age to you. R xx

Hi Misti,
I'm glad your palpitations resolved. I hear from many patients that they experience back pain and stiffness after this surgery. Yours sounds a little more severe than most, however. If you are out of surgery 8 weeks; you can always try massage (if laying on your stomach is something you can do comfortably.) Hang in there!

Sandy

Hi Misti,
It sounds like you are doing well - I am happy to hear that! You might try a couple of Ibuprofen (Advil) at bedtime to help you get comfortable. The vitamin E and cocoa butter are a good idea and you can also get some of the scar therapy over-the-counter medications, like Mederma, at the pharmacy. Cardiac rehab is a good idea for many patients who want to step up their exercise safely in a monitored environment; but it's not free :0(. Not everyone does it, but it can be beneficial and make you feel more secure about what you are doing. If your palpitations continue, you will want to make an appointment to see your cardiologist.
We sincerely hope you continue your terrific progress!

Sandy (Dr. Accola's ARNP)

Hi Misti,

About Cardio-rehab, I am sure everyone needs it but it probably depends for most people on whether or not it is covered by insurance. I was fortunate to get 36 or 38 sessions.

What it provided was a knowledge of what being physically fit means. My cardiologist thought that I recovered so rapidly that I didn't need it. But I knew I wasn't where I should be in terms of my cardio fitness. I completed the course as provided by my insurance, and felt there was a definite benefit to exercising while being hooked up to monitors. It gives you the security to know what you can safely do.

On the other hand, it is pretty expensive if you are paying for yourself. BUT, I would investigate to see if there is some type of help for people wishing to attend.

Just my opinion!

Anne Shannon

Misti,
What type of valuve did you get? I didn't see that in your journal.

Hope you continue to feel better each day.

Julie

Hi Misti,

You might try using your spirometer again - and often - to alleviate the back pain. It worked for me and several other people on the list.

Anne Shannon

Fantastic! You go girl! -- DVB

Misti,

The horrible back pain is from the way they position you for surgery. It was really the only pain I had after surgery and it was bad. It does ease but it didn't go away completely for me for about a month. Massage helps a lot and some people have found flexeril (muscle relaxant) helps too.

As for that crackling in your lower back - it's your lungs and the fluid in your lungs or in the pleural sac (mine was a pleural sac problem). I had that for about 6 months. Sometimes it hurt and sometimes I barely noticed it. The only thing that helped me with that was Advil. (If it's in your lungs and it gets bad enough, they can drain the fluid.)

As you can tell, there are lots of things to bother you after surgery. If you read through people's journal, you'll find there's a plethora of problems that can occur. But focus on the fact your valve has been fixed and most of these symptoms are temporary and soon enough you'll feel great!

Take care.
Ricki

Misti, I'm 5 weeks out from surgery. Sleeping is still somewhat uncomfortable for me. I take a pain pill (Lortab) right before bedtime. I try to stick with tylenol during the day, if needed.

I tend to over do it sometimes. When needed I take a pain pill. I try to stay pretty active until my coumadin count gets regulated. I figure that I'm at less of a chance of clots, if I'm more active. I don't know...

Everyone is different. Don't stress! And I'm glad that you went to the ER!!!! :) I hope that you feel better soon!

Christy Naughton

Hi Misti!

So happy to hear your surgery went went. About pain meds . . . I was down to Tylenol by the time I left the hospital but I think it varies widely. I know many people here were taking vicodin and other fairly strong drugs for several weeks after surgery. One thing the Cleveland Clinic was VERY clear about was that pain meds help with healing and patients should not be shy about asking for what they need. If you're in pain, your recovery will be much slower.

I'm sorry to hear you're getting so much flack for needing pain meds . . . only YOU know how you feel and what you need.

Good luck!
Ricki Shine

Hi Misti,
My name is Sheila Garrison (California). I had my surgery on the 12th so I am 7 days post op. I have no real pain or discomfort EXCEPT for the upper back/shoulder muscle area that most of us are going through. I understand why and since I've been a Medical & Sports massage therapist for over 14 yrs., I have the great advantage of dealing with it via other therapist. I think every hospital needs a MT on staff post op hearts for this pain control. Let me know if you'd like me to explain better how to deal with this. Maybe I could get Adm to let me write an insert chapt. for his next book.
Anyway, "I feel your pain" as this has been the most annoying part of recover for me.

Stay strong. I'm keeping you in my thoughts.

Sheila Garrison
Apple Valley, CA

Hi Misti. Good to hear you are doing well. Low grade temperatures are not abnormal after surgery - just keep using your incentive spirometer and walking. You might find that when you get sweaty it's because the tylenol portion of the Percocet pain tablets breaks the fever and causes you to sweat. If it gets above 100.5 we want to hear from you.
Sandy, ARNP.

Hi Misti. It's Sandy; Dr. Accola's ARNP. It was an honor to participate in your journey to wellness. Let us know how you are doing!

Hey Misti... I thought the same thing about my surgeon. I had Dr. Gaudiani who also appears on the website and is another bad ass!! :) You had Dr. Accola, right? What did you actually have done and when was your surgery? I am 4 weeks post-op from an AVR. I was born with a bad valve and as a child could never really run. It finally got so bad with my inefficiency over the past year that my family started to speak up. I was at a BBQ not too long ago and had an elderly man grab me to dance and I couldn't keep up with him and I am only 39. I had to sit down and rest...sad. It is early days yet from the surgery but I should be able to run circles around them in the future :) I too am married and I have 8 year old twins.

Talk to you soon
Take Care
Follow Your Heart
Mari Dunsmore :)

You go girl!!!!!!! Sooooo happy for you!!!!!!!!

Christy

Yay! Repair is great news! And you are up and walking! -- DVB

Misti,

Thinking great, healthy, heart-pumping thoughts for you.

Give my best to Sara and Dr. Accola.

Keep on tickin!

Adam Pick

Thinking of you, rootin' for you. -- DVB

Hey Misti! I'm sorry for your stress! Goodness!

Fast recovery you asked earlier? I had my mitral and aortic valves replaced 3 weeks ago. I was "cracked" open. (I'm 40, with a 7 year old) follow Barry's advice!!!! When you are able, eat your meals from a chair, walk a few more steps each day and use your spirameter (breathing exercise machine). I got to the point during my hospital stay, I spent more time in a chair! I hated the bed. I ended up wearing t-shirts and pj bottoms!!! I really started walking my 3rd day (end of a hallway). Each walk I tried to add more hallway to my walk.

Today, I feel great!!!!! I wish I had this done a few years ago!!!! Keep a positive attitude, be patient and lean on your family and friends!!!!

Christy Naughton

I'm going for pulmonary valve surgery at Boston Childrens Hospital on July 7th with a meeting with the surgeon on 7/5 and pre op on July 6th. I feel the same about you with the pain and also i was scared with being on a ventilator and not being able to communicate. I read most of adams book the one that is on the site it's pretty helpful and very informative information. Well lots of luck and you'll be fine as will I be too. Thanks Jon B

Hi Misti: good advice from Barry. Move early and often. Push yourself a little, or even as much as they'll let you. I found that even while sitting in bed if I moved my arms around in the air it helped. If you can do a sit-up, use that to get up and down from bed when the time comes. Hook your foot under a thingy on the bed for leverage (or have someone hold ankles). My first day I ate a ton of popsicles, they were a great treat. Later on I ate as much as I could since weight loss is common after surgery and you need the nutrients to heal. That seemed to help. Pain: I had the full open chest treatment, but never had much sternum pain. That part wasn't a problem. I'm glad you are getting excited. That's a great mind-set to have going in. Be mentally engaged in your recovery - ask questions about what is going on, the why and the how. Laugh and kid around with the hospital staff. Have your family spend as much time with as you can get them to. Befriend another patient and pass along some encouragement to them. You are a brave woman to face this. I think you will be very happy when you wake up afterwards in the ICU knowing the future looks bright. -- DVB

Misti Blu Day, re "Does anyone have any advice for a speedy recovery or what I need or should do to make the recovery go somewhat smoothly? Also, the one think that does worry me is the pain. I imaging it will hurt an awful lot with a broken sternum. Ugh. Advice?". You will need to get info from folks who had the sternum "cracked" from others, but for the other things you mention, I think #1 listen to the the docs and their team's recommendations, especially about restrictions to keep you safe from hurting yourself. If you have the pain med in an IV and are told to push a button when the pain gets to 2 or so on a 10 scale, do it so it never gets beyond the 2, or whatever they tell you. I just pushed the button 2 or 3 times every time I thought abou it and never had any pain to speak of. Never let the pain get a head of the meds, that is let the pain get too much before you get the pain med on board. Then, move as you can. It will be only a little at first, but keep adding as much as you can. As soon as they will let you walk, do it. It will be very little at first probably, but keep adding. As soon as you can, walk around he ward, adding more and more each time and more and more each day. Just do it. When it is meal time, as soon as they will let you, get out of bed and sit in a chair to eat. Use the spiro-whatever it is called..it is the thing they will bring to you to blow into to help clear your lungs. Do as much as they tell you to do with the thing, and more as you can. ..Good luck to you...Barry on the Mtn in NM

misti, on Florida hospital website goto this link. There are links to financial consultants and charity Care. Look under financial assistance. They may be able to help. Also, appeal keystones decision.

http://www.floridahospital.com/Patients/InsuranceandBilling.aspx

Kristen

A couple of suggestions. If you have insurance but are just having problems, see an attorney who might be able to make a few phone calls to straighten it out. If you have no insurance, you and/or your husband might try to take a job doing anything where health insurance is offered for a short time. If you get insurance that way, there are no pre-existing condition rules. Good luck!!

Misti Blu Day, Why don't you Google the Cleveland Clinic that is in Florida and ask if they can help you. Won't hurt to ask....and they are good. Barry on the mtn in NM

Greetings to you Lady...that is such good news to hear first thing in the morning. So glad you persevered and found a surgeon. ....and a date! Well Done.

Mona

Misti,

I'm so happy that things went so well with your new doctor and you feel confident with him. Now you can relax and know you'll be in good hands for your surgery.

Take good care.
Ricki Shine

Misti,
Best of luck as you meet with your new surgeon on Monday. There are many surgical options out there, and it is good to get as much information as possible.
I had my aortic valve repaired and my aneurysm removed and that part of the aorta replaced. My surgery went very well, and I am thankful it was caught in time. My recovery is coming along, if slower than I would like. Having your valve replaced will be a blessing for you. You deserve to feel well. Take care!
Tia Phillips

Hi Misti Blu Day,

It sounds as though you are doing the darn thing and being a great advocate for yourself. That is soooooooo cool. You are one artistic type tp keep an eye on. Although slowed down a bit by your condition, you are a strong sister.

Mona

good for you, Misti Blu Day, for getting that one more opinion. Doing what you are doing is why this evening I set another post surgery 5 K run PR (personal record), not quite 6 wks post surgery (robotic). That was after the cardiac rehab guy worked the hell out of me this afternoon on the treadmill, stationary bike, and hand cycle, and after a short swim. I'm sayin' I could not have done these things if I'd listened to and had my sternum sawed by a local guy, who gave such a good sales talk, my wife was convinced I was crazy to go somewhere else for minimally invasive. Again, good for you! ...barry on the mtn in NM

Misti,

Your doctor is an idiot. A valve replacement is not a nightmare. It's a blessing . . . my grandfather died in his 50s because they couldn't fix his valve. I, and lots of others here, are alive today because they are now able to fix and replace valves.

And the surgery and recovery aren't a nightmare either. Maybe not what you'd prefer to do for a few months, but not nearly as bad as people imagine.

Hope you feel better soon.
Ricki Shine

Hi Misti,

I admire your courage. Your so yopung to have to deal with these serious health issues - I don't know, some doctors really suck...

You know heart surgeons are the ones that pretty much the cardiac units in hospitals because for all intents and purposes they are surgeons and cardiologists all rolled up into one - so really, they are the best person to discuss you heart health issues.

good luck -hug

pete

Hi Misti,

Thanks for the kind words about HeartValveJournals.com and my book.

You just made my day.

My thoughts are with you.

Keep on tickin!

Adam Pick

Remember this: Just because someone is a doctor doesn't mean he or she is not a jerk or is not incompetent. We must be informed consumers in this day of medical care because we simply cannot walk into a doctor's office with blind faith. First we must get to know the doctor in order to gain trust. And sometimes after getting to know him/her we realize they are either not great or it's not a good match. Move on! I've been down this road so often it makes me sick. As a patient you have rights. Always ask questions and always insist on being treated respectfully and if you're not - complain loudly and move on to another doctor. All the latest and greatest studies prove that we dould NOT wait until the heart is enlarged to have surgery. In fact it is now believed that many patients should have surgery even before they develop symptoms.

Good luck to you Misi.
Ruth Howell

Misti Blu Day.

It made since to me when my young cardiologist said to me I should take care of the issue before I have enlargement and damage, sooner than later. ...just sayin'. And, I will tell you, doing research on line made the biggest difference in the world, so to speak, to me. I stumbled on, well, maybe stumbled on is not the right phrase, but came upon learnig about places that were way better experienced and knowlegeable about treating my issue, to include the Cleveland Clinic, of which I had never heard before. Glad I went beyond the local folks in this case. It is an easy conclusion that the more experience a person has, the more insight the person has, in this case really important when they were gonna fix the mitral valve inside my heart...and, you know, you gotta have heart. How fortunate, my opinion, I discovered the Cleveland Clinic and ended up with quite possibly the best surgeon and team in the world to fix my heart. There's a Cleveland Clinic in Florida, much more convenient to you to reach than Cleveland, OH, from where I am near Albuquerque, NM. I'd say, it won't hurt to get on the Web and get the numbers to call...you know 800 #s...toll free...won't cost you anything but a little time, which could make the world of difference to you. My experience..surgery Friday morning...in the afternoon by pass ICU and go to "rapid recovery ICU"...Saturday to the step down unit (that means out of ICU stuff to a regular room)..Sunday they talke about discharging me, but I have a high white blood cell count, not because of infection, but I had an allergic reaction to something...and Monday moring they tell me I'm being discharge..and I say "before I even get lunch"..and the nurse says.."OK, you can stay for lunch, but then you're outta here". Wow, 3 1/2 days aftrer OHS and I'm outta the hospital. You've had some I'll call run around stuff...and some good advice...just one piece of advice from an experience OHS patient with only one OHS experience, not much experience and hope I have no more...but call these experts, perhaps the best in the world, and get their opinion...just sayin'. Best to you...Barry on the mtn in NM

Misti,

In my opinion, it is best not to wait. I made that mistake, and it almost cost me my life. I was born with aortic valve stenosis. My symptoms became prominent during my pregnancy. I was bedridden for 4 months. I had my son a month early and everything was fine for a while after that. Unfortunately, I began experiencing severe shortness of breath and chest pain in the following months. However, it wasn't until I had a syncopic episode that I truly feared for my life. I was rushed to the hospital that day and had valve replacement surgery a week later.
Since my surgery, I have been able to do things I never imagined I could. I even went skydiving in Vegas last year. It was such a relief to be able to run after my son without gasping for air. Surgery gave me a new life and ample opportunities to experience things to the fullest. By the way, I was only 29 when I had my surgery--young enough to experience a whole new life.
I wish you the best of luck and will keep you in prayer. God bless you.

Hi Misti,

Have you looked into hospitals that are doing trials on heart procedures? That thought crossed my mind to ask you. I was reminded when Ruth Howell mentioned Cleveland Clinic asking her about participation in a trial. You may qualify, although travel may be necessary. Plus...check hospitals near you. Was just thinking of you. Let me know what you think.

Mona

Hi Misti
Guess we just assume everyone who comes to this site is due to Adam's book. If you read it, and you should, you'll learn he had the Ross Procedure and gives info on it. Good luck with everything, fundraiser, doctors, hospital and all.
Fran

Just do it....great idea. Some wonderful friends planned a sendoff for a lady about to have a serious issue taken care of and moi with the mitral valve coming up, the Sunday before my surgery, first date, but I got a fever and everything got postponed...those wonderful people planned it again when I got my new date...was wonderful to spend that time with friends for me....know it will be for you, too......Just do it, lady! ...Barry on the mtn in New Mexico.

I feel you Mist Blu. Sometimes day's feel gloomy because people places and things don't cooperate properly. It's a round and up and down ride. A party for you sounds nice. It will all work out.

Mona Smith

Pre-surgery party?

Great idea!

Can I come?

Keep on tickin!

Adam Pick

Thoughts and prayers are with you. If I can do anything please let me know.