Ray's Journal

Mark Wilbur  I'm sorry to learn that you're having these problems, Ray. I hope you will have an explanation soon and that further surgery will not be the answer.

Susan Lynn  We'll be praying for you. Stay positive . We'll look forward to the updates after your appointment. If you made it through the stress test, you're probably in better shape than you think! If it's like the US, that incline is pretty steep and the speed gets progressively faster. Ten minutes can be an eternity!

Ray Farmer  Thank you for your kind words and prayers, much needed. After review with cardiologist they diagnosed a Prosthesis‐patient mismatch the - wrong size valve for me and now face a repeat operation to correct - great!

Mark Wilbur  Very sorry to hear that you will have surgery again so soon. It makes me wonder how such a mistake could have happened. Keep us informed as this "re-do" is "re-done." Hope that everything goes better for you this time, Ray.

Marie Myers  What size valve did they use? That information should be on a card that they gave you after surgery. I am so sorry that you may have to undergo another surgery.

Maggi Turner  Ray - I'm just a month behind you with the same surgery and I also get breathless, but it doesn't stay with me. I went back for an echo last week and was told don't underestimate what you have had done - it can take 12/18 months for the body to completely recover. Maggi

Rita Savelis  I still get breathless on stairs and during dance class (2 years later) but I'm told everything is fine, though, so I carry on. It took at least 6 months or more for me to get over major tiredness
You guys are doing great. Take care.

Ben Hyman  My stamina is no where near what it was before surgery. I was doung Kettlebell 3 X weekly. I started playing Table Tennis to help with my recovery and it kicks my butt. I'm out of breath after about 45 minutes

Ray Farmer  Have spoken with cardio nurse who says its not unusual and probably decrease over time and everyone is different, the key thing is to watch out for anything unusual for you. Ben sorry to hear about your stroke but it sounds as if you got it dealt with in time, do you have a metal or biological valve?

Lilly Black  Ray, even after 3 yrs I feel breathless when I do more strenuous exercise, i.e., turning up the resistance on my stationary bike, and carrying heavy items. I don’t do weights for that reason, I do better with brisk walking, swimming, dancing so I stick with the aerobic workouts vs resistance exercise. Feeling better now that it’s been over a year for you since surgery?

Maggi Turner  Good to hear from you Ray that you are doing ok. I'm a month behind you, but making progress although I keep thinking I am slow. Nit feeling quite so tired these days. Down to two pills also

Ray Farmer  Thank you, this part was not as plain sailing as I hoped. Desperate to get back to work but being told I need to wait a bit longer.

Maggi Turner  So good to hear from you Ray, but sorry to hear you have had all these complications. Now you are at home you will hopefully go from strength to strength. What skills these surgeons and doctors have to correct the 'hiccups' our bodies throw at them. Stay positive and you will soon be 100% again says someone who is scheduled for surgery on the 10th and beginning to get very scared!!!! Let all your friends on here know how you progress.

Cathleen Weed  Thank God you're okay. I was legitimately concerned! 🌟 I agree that your goal should be to get off as many of those meds as possible. I've blocked out what the pain was like I think lol. It was definitely unpleasant, mostly sore. I describe the sternum pain as having all your ribs broken at once because technically they were. It takes awhile for the pain and swelling to subside. I do know for certain that I only took over the counter pain meds, no prescriptions. I didn't want to take anything that would slow my recovery. Plus I can't tolerate pain meds (they make me so nauseous) so I think that was a blessing. 🌟

Catie B  Oh my, what an ordeal! I'm so glad you're coming along now, Ray. I hope your path gets smoother and smoother.
I was on Tylenol alone for pain well before leaving the hospital.

Phyllis Petersen  I feel like such a woose! I used the oxy, especially at night, plus muscle relaxants and inbetween Tylenol 8-hour. I always have to have something in my stomach when I take pain meds to keep the nausea at bay. Having even a piece of toast worked better than the anti-nausea meds I had with my last surgery and is way cheaper. I'm sorry to hear you've had to go through so much. Glad to hear you made it home for Christmas. Hopefully, now your on track for a good recovery and will be dropping many of your meds in the near future.

Maggi Turner  Thank goodness for that - you've been having a rough time Ray. Let's hope you are on the homeward run now - literally

Meredith Bray  Back pain? My PT helped me with that by telling me to stand up as straight as possible to straighten out my core muscles. Also, make sure your head/neck/shoulders/arms weight in supported when you are sleeping.

Another approach may be a therapeutic massage? I had one about 2 months out that alleviated my sciatic nerve pain overnight. My massage therapist was aware of my surgery and very gentle. It was delightful. I think it was the first time I really relaxed after my surgery.

Acupuncture?

Cathleen Weed  😊😊😊😊 Great news!! They will come in and work with you on the breathing 🌟 I remember a machine they used on my back with a high vibration to keep the lungs clear. It's routine. Sounds like you're doing great though and the valve is working well (and silently) ✌️ Keep walking!

Cathleen Weed  Also if you keep having breathing pain I would ask for a chest X-ray. Even a 5% collapse of a lung can cause issues. Could be that or fluid/blood in the chest cavity which is very painful. Could also have to do with your allergic reaction. If the pain doesn't resolve they will begin a process of elimination. I wish I knew what type of pain you are experiencing. Sharp, burning, only when you inhale deeply? I'm assuming your O2 saturation is good or they would be more concerned about PE. Nurse Cathy lol

Ray Farmer  Had a chest x-ray yesterday and 4 bloods & blood pressure's all day long, also getting some atrial fibulation which is very disturbing. The surgeon came in and said everything was ok but that I needed to relax and walk about more. Did that and coughed up a load of thick blood stuff from the chest. Pain is a sharp burning pain when I inhale deeply. O2 levels are around 95% but still need oxygen.

Catie B  I had pleurisy for awhile soon after surgery and it hurt very badly to inhale. I hope your pain eases soon. Afib's a very frequent post-op complication and they will know how to address that. I know fast afib feels terrible and scary. Hoping your rhythm settles down!

Maggi Turner  Hope things are beginning to settle now. Do as the surgeon says relax and walk - easy for me to say that now, but wonder if I will feel the same way after my surgery! Think positive Ray.

Maggi Turner  Pleased to hear you are progressing and now on a general ward - a positive step. I can't give you any tips on the breathing, but I am sure there are plenty of people on this site who will give you advice. I shall be interested in what they have to say in readiness for my surgery on 10th
January. Keep doing what you are told and you'll soon be home.

Phyllis Petersen  If they don't give out heart pillows where you are, you need to find a substitute to hold against you while trying to breath more deeply or, worse, cough, which you need to do. I still remember how painful breathing was at first.

Carmen P  Use your spirometer every couple of hours. That should help if fluid around your lungs is the cause of some of the pain. Take your pain meds on schedule to avoid pain.

Cathleen Weed  If you still have the drainage tubes in then breathing will be painful until they are removed 😕 So glad you're doing well!

Steven A Husted  do what they tell you and try to breath lightly and deeply on your own if you can and if you cannot try the spirometer i tried it on my own and did it slowly and made out all right every patient is different

Phyllis Petersen  So it finally happened, but not without another catch. It's good to hear you're on the other side now. Hopefully, you're past the worst of it and on your way to recovery.

Ray Farmer  Yes (apparently) all ok had a brief word with the surgeon and it turns out the anestheticist was a friend of mine from way back (mmm). They think it was a reaction to a plastic (?) in the system and have to do an investigation, I went up like a puffer fish. Today was rough, with breathing and pain relief but only what others have talked about. Hoping this will get resolved by the end of today and can get on with recovery proper.

Phyllis Petersen  I had breathing treatments 4 times a day the whole time I was in the hospital, but I had asthma before surgery. The pain takes a bit of work to find what works best for you. When the pain meds weren't doing it anymore, I took the advice of someone on here and started taking a muscle relaxant, which did the trick. I also alternated with Tylenol 8 hr. , which I still use when needed.

Christopher Sasso  I know things like this are frustrating, try to remain at ease and before you know it you'll be on your way to recovery. My dads procedure was postponed several times and it made him anxious, but thats the way things work i guess.

Stephanie Jones  i was so anxious that morning from the time I woke up until they put me under 4 hrs. I can't imagine what you are feeling. :(

Amy Steele  I'm so sorry to hear about the delay. It must be torture to have to wait around and keep getting bumped, and then have to wait another few days. Hopefully they'll prioritize you for Monday so you won't have anyone else take your place in line...

Barbara Laurie  Postponements can be so stressful. I've tried to look at them (I've had a few!) as time to relax, get a bit stronger and trust God is working things out. Hang in there. ❤️Best Regards❄️️

Cathleen Weed  Well that just sucks 😕. If it makes you feel any better, Mondays are a better day for surgery. The surgeons are refreshed AND the doctors are there all week following your surgery instead of going home for the weekend and having on-call doctors available. One more weekend of good times for you before a little downtime. Do something fun!!

Phyllis Petersen  That is always a fear. I was so relieved when I got taken to the back so quickly. You go through so much emotionally preparing for surgery, and all the starving doesn't help, and then you have to start over with a new date. Hopefully, no more delays and you can get this behind you.

Ray Farmer  All -Thank you for your words yesterday was difficult; Got checked in and all mentally psyched up but came to nothing. Unfortunately some emergencies came in in the evening so I got bumped. Now have to wait for a call Monday morning to confirm I should go in. However feeling very calm and positive and maybe the beginning of the week is better for an operation!

Phyllis Petersen  From what I was told, it's easier to move from ICU to stepdown if you're at the beginning of the week. They have a harder time finding empty beds later in the week. Hopefully, you do something fun on your weekend reprieve and all goes well for Monday.

Carmen P  Eight weeks and two days since having my AVR. I can sympathize with what you are going through. Best wishes for a speedy and uneventful recovery. Just remember......wait for and ask for...help. Rest, even when you think you don't need to. I found that I did much better than I thought I would. Good Luck.

Stephanie Jones  Wishing you an uneventful surgery!! Make sure you have a paper pad and pen so you can talk/write down what you want to say when you're breathing tube is in

Maggi Turner  Wishing you all the best Ray. I'll be thinking of you and look forward to reading your comments after surgery. It will be my turn in a month's time. I agree with you so many questions have been answered on this site. Good luck. Maggi

Lila Richards  Best wishes Ray! I'm sure you'll do well and will have a speedy recovery! You got this! You're in my thoughts and prayers! ❤️

Dwight Miller  Best wishes to you for a speedy recovery. I am 5 weeks post op for my AVR and so far recovery has been smooth, hope yours will be too.

Amy Steele  Nine and a half weeks post aortic valve and root replacement... Feeling more like my old self (15 to 20 years ago) every day... You'll be here too before you know it, Ray. You've got this! You're in my prayers.

Clare Auten  My situation was very similar to yours. 2 months after first cardiologist visit- surgery. That was 3 years ago! Life is as normal as it can be with a full time job, some work on the side, 3 kids (ages 7, 10, and 16) and lots of other stuff to keep me busy. Good luck. Hopefully you will be back to "normal" in no time at all.

Ray Farmer  Had to start a 5 day treatment but they think it will clear, don't want to wait any longer. Good to see you through the surgery and smiling!

Phyllis Petersen  Did you test positive? I was giving goop to put in the nose, but they had the test back (negative) by the day of surgery. They gave me another treatment after surgery too.

Ray Farmer  Yes positive & small tube of goop (good word for it) ➕ body wash for 5 days they seemed confident it will clear it.

Lila Richards  I was negative and they gave me the goop, body wash, and antibacterial soap to use for 5 days too. Better to be on the safe side!

Phyllis Petersen  Good luck in clearing it up and going forward! Any idea where you might have picked it up? It's scary how abundant it has become.

Ray Farmer  Thanks, don't know it just seems to be everywhere normally carried by people and harmless but as the nurse said '...it could be serious if it got into a wound... and your going to have a very big wound...'

Stephanie Jones  At my pre surgery tests/echo, they could'n't find my severe regurgitation and were asking if it was possible I had lung issues/ asthma instead of a heart issue! - then they found it (the 4th tech) i explain here: https://www.youtube.com/watch?v=qFW66ey68OM&t=738s

Cathleen Weed  It's a surreal feeling when you're waiting but once it's over it will be all about healing and getting stronger 🌟💛. I found that it helped to focus on what I was going to do following the surgery 😊. A post-surgery plan of action is a good thing to think about 🌟. You're going to feel so much better !
You can update your surgery date in the 'my story' section so everyone knows to send you prayers and positive energy 💛.

Civita Fahey  yes, I have the same feelings.. Im not scheduled till early spring but, I do the same thing one minute I say this will ok, I'll get it done and all will be fine as they tell me, then, the next, I start to get so anxious and think, something will happen, will I be the same? its a scary thing and only those of us going through it understand.. but, have faith in God that he will walk us through..
good luck on your surgery.

Maggi Turner  Exactly the same feelings with me Ray. I feel fine one minute then get the realisation of what is going to happen. I agree with Cathleen - have a post op plan - we are getting one together and I am trying to focus on that. My surgery is not until 10th January, but I am even scared of the angiogram next Monday the 5th. What a wonderful site this is to 'chat' to others who know how you feel. I desperately need reassurance - my son died of a cardiac arrest this year - no warning - unfortunately I will ptobably still be in hospital on the 1st anniversary of his death, but I know he wouldn't have wanted me to delay the operation. I do wonder if the shock of his death brought on my problem.
Good luck Ray - all done and dusted by Christmas.

Ray Farmer  Thank you Maggi. So sorry to hear about your son it must make your journey all the more difficult. I'm sure he would want you to 'live' for him and he still lives in your 'heart' you can draw strength from that.

Really - do not worry about the angiogram it is nothing. I am very squeamish but although an unusual experience, (it does not hurt). I remember this calm and stillness came over me just before I went in and I had refused the sedative. You will be in good hands!

Did you see Cathleen DeWitt's post of “Hello Kitty” slippers! I'm taking a picture of that to hospital with me.

Maggi Turner  Thank you for your kind words - yes, timing of the op isn't great, but I can hear James saying "get it done" so get it done I will.
Yes Ray I saw 'Hello Kitty' - beautiful. Thank you for your thoughts on the angiogram. I have been told mine will be through the wrist so only have to rest for a couple of hours afterwards. I have just ordered Cathleen's book of healthy recipes - something else to focus on afterwards in getting fit again.
Do you know if your surgery will be the 'minimally invasive' method or 'full open'? Haven't met my surgeon yet, but I have been referred to a guy who specialises in 'minimally invasive'.

Ray Farmer  Maggi, another thought I'm sure the shock did not bring on your problem. I've spent my life trying to live a healthy life and pondering why has it happened to me but a wise radiographer said to me it just one of those things and strangely I didn't feel ill until they told me I was(?)

Maggi Turner  I still don't feel ill, but I do realise now that
I have suffered from breathlessness for a long time and since I have known I have a problem it seems to be worse or maybe I'm just more aware of it. Have you decided on your valve yet?

Ray Farmer  I think one becomes more aware and we are the lucky ones.

It has to be the full OHS, my surgeon said that for the aortic valve for this operation it has to be the full works but could be replaced by TAVI. To day I am erring towards a biological valve (Carpentier-Edwards PERIMOUNT), as I heard a friends mechanical valve and thought the noise would really bother me, (although they said there was probably a reason their valve was particularly noisy - I am still open. This week will be spent in research although I'm not sure if I will be any the wiser, I really don't want to do this again but my experience of the angiogram was very positive and the TAVI procedure appears to have similarities.

I asked my surgeon and he said he would have a mechanical valve because he doesn't like multiple interventions however most younger medical people I have asked say a biological valve because TAVI will be perfected for the aortic valve within 5-10 years. The odds are favor of routine TAVI but there does not seem to be a clear consensus.

Phyllis Petersen  The emotional roller coaster goes on and on! It's not just the stress of what your body will be going through, but all the preparation too. Then afterwards, there are "what if" moments and the wondering if everything is all right. Getting moved up means you'll be through this sooner and on the better side. Just remember to ask questions and let people know what you need and you should be fine. Good luck!

Chris Vereb  Got a coin?...:-P Toughest part. I was thrown off a little because once I decided mechanical the surgeon wanted me to have a different brand then I wanted. He gave his reasons why and at that point I decided no use auguring. The one I have has been in use since 1993, 65000 in place with out valve failure.

Cynthia H.  I getting 2 new valves the day after you. My local cardiologist said they would be mechanical by OHS. Was not presented with choice of brands, though.

Corey Sines  Ray valve choice really comes down to what can live with or without. Check out my journal posts I discuss and look at it a lot.

Steven A Husted  i have posts on this in my journal but some of the main things are on mechanical you have to be on blood thinners warfarin or coumadin the rest of your life and keep your INR in a certain range which can be hard to do sometimes then there is the clicking of the valve and they say it lasts longer but may not then there is the tissue valve which may not last as long as a mechanical but with all the advancement in medicine tissue valve's are lasting longer and if you do have to have another heart surgery it may be a TAVR where they do not have to cut you open and you dont have to watch your INR or take coumadin the rest of your life i said it before they both work it is just what you are more comfortable with i went with a bovine tissue valve and i am very happy with it even if i needed a second ohs i would choose a bovine tissue valve because the surgery was not that bad and now that i have had ohs i know i could do it again with out to much trouble hope this helps some of you waiting for your surgery

Diane Zeigler  Being on blood thinners is something to think about. I was taking two baby aspirin a day when I had to have a mole removed from my leg. I thought I was going to bleed to death! I couldn't get it to stop. The pharmacist recommended some kind of gray powder to put on it to stop the bleeding and it did the job instantly but it stung like heck. It really alarmed me that simply aspirin had made me bleed so badly.

Mike Thompson  I had to make that choice 5 weeks ago so I'll offer my opinions on why I went with a mechanical valve. But ultimately of course you have to decide what you're comfortable with based on your situation.

I discussed the options with my surgeon and going into it I was thinking tissue all the way. I didn't want to take blood thinners, I was afraid the clicking would drive me crazy (still not quite used to it, but getting much better), etc.

But let me use my situation just for an example. What I'll say here is based on my surgeon's recommendations and my own research, which he encouraged me to do.

I was born with aortic stenosis and a bicuspid aortic valve. I had a valvoplasty at 12 and finally had to have the valve replaced last month at the age of 43. Having that previous surgery meant I already had a lot of adhesion (scar tissue) to cut through, and this along with various other factors adds more risk to every additional surgery.

Currently, tissue valves last around 10 years. This might very well get better as time goes, but today, you're getting a valve with an average lifespan of 10 years.

So doing the math, a tissue valve at 43, means another replacement at around 53 which could be a TAVR. That's a non-invasive procedure, but there isn't enough hard data yet to know how long they'll last. They're currently for older, high-risk patients that likely wouldn't survive normal open heart surgery. They know they're good for at least 5 years, but there simply aren't enough results regarding non-high risk patients to know long term viability.

So let's say the TAVR is as good as a regular tissue valve and lasts another 10 years. Now I'm 63 and I can't get another TAVR, so now I'm having my third open heart surgery. I'm not certain if that replacement can be tissue or not, but assuming it is, we're setting the clock for another 10 years.

My chances of surviving a fourth open heart surgery at 73 has got to be on the low end, so what do I do?

This is why I decided that a mechanical valve that SHOULD last at long as I'll need it was worth the clicking and the Coumadin.

Again, this is my view so take it for what it's worth. Good luck in whatever path you choose to take.

Ted Miko  Hi Ray. I too struggled with this choice until the moment I was on the table. I was blesssed to have a very patient surgeon. I was advised by my cardio dr mechanical because of my age. But the warfin has never sat "right" with me. So I read everything I could on pros and cons , and lots of patient stories on both valves. My surgeon told me the last 5 patients my age group (50) they had went tissue. All the reading I did I think stressed me more than needed. I prayed extensively on it and I felt a tissue was the right choice. I truely believe that in 10-15 yrs the tech sould be advanced and the next time won't be nearly as hard. Remember Ray, its by Gods grace you get to make this decision. And whatever you choose it's a gift. God bless your surgery and an uneventful recovery!

Maggi Turner  Hi Ray - my cardiologist has advised tissue which should have a 10/15 year life. I am taking his advice telling myself that heart surgery will have progressed so much in the next 10/15 years that 'next time' will be easy. Also I didn't want to be on Warfarin for the rest of my life. I have my angiogram on the 5th December - very apprehensive as to what this will be like. Should know more about surgery then.

Civita Fahey  Hi Ray, Im 55 and will be having surgery within the next 3-6 months. I also have debated back and forth.. my surgeon gave me both options and said that he feels the TAVR will be gold standard within the next 5 years and that most of his patients in the "middle group" 50-60 yrs of age are going with the tissue expecting that when its time to redo, the TAVR will be the way.. he said the chances are about 95% that its going to be the way.. I too struggle with the coumadin as hoping the Lord allows us to live a long life, the chances of a coumadin bleeding event does grow. Also, I'm a bit on the obsessive side and the ticking wold drive me nuts and I would drive my husband and family nuts if I heard it ticking.. So, I believe I've made my decision to go with the tissue and pray that medicine will continue to advance as it has., the chances are pretty good. Best of luck with your decision.. remember it has to be right for you.

Chris Vereb  The choosing and waiting is the hardest part. I chose mechanical at age 51. I work a very physical job at UPS. Personally warfarin not a problem. Something that made my mind up was that once they put a tavr inside an already replaced valve, that valve opening becomes even smaller. Good luck you'll be fine!

Steven A Husted  i did not like the idea of warfin the rest of my life and as far as lasting longer some mechanical only last 6 months and there have been some tissue that have lasted 31 years so as far as having a redo or second or third operation there are patients on this website who have had 3 and 4 ohs and are doing fine i know i could go thru it again if i had to it was not that bad it really depends on what you are more comfortable with

Rita Savelis  First, can I just say that the word is "anticoagulant" and not "blood thinner" ? I'm sorry, but that's my pet peeve, because one's blood is not "thinned" at all, it just takes longer to coagulate.

There is no right answer for a valve choice. As you can see by the answers, it is very personal and everyone's situation is different and everyone defends their choice because it's what they chose, or what was chosen for them.
Not everyone's situation even leaves them with a choice.

The anxiety about making the "right" choice is hard, because ultimately one will never really know if one's choice was right. The other possibility one could have taken will always be there as an unknown.

I feel for you, as we all do. I'm sorry you have to go through this. Take care.
The choice you eventually will make is the right one for you.

Ray Farmer  Many, many thanks for your comments, glad to know it’s not just me with this conundrum. Spoke today with someone who as a mitral replacement. did not hear a thing until they pointed out the 'thump' of the valve - then that was all I could hear! Thank you to you all.

Cathy Slipski  Hi Ray! I had a mitral valve replacement last January. I am 38 and went with a bovine valve. They wanted to give me a mechanical due to my age but I could not bring myself to be on Coumadin for the rest of my life. I am happy I made the choice I did. I live a normal life and when I have to do it again tissue would be my choice. This is just my story and valve choice is completely up to you. I wish you luck on your decision. My advice is research, research, and more research!

Chris Vereb  Hi Ray its me again...lol I can only hear mine if I try to at night in bed. I don't know if mine is just more quite than other brands or what. I have a Sorin "Top Hat". Like we are all saying its a personal choice. Here is a link to a YouTube video of a guy in England you might like. https://www.youtube.com/watch?v=InF-T6Go8Lg

Cathleen Weed  Hi I have a tissue (bovine) aortic valve. I've had things happen throughout the years, like an aortic aneurysm etc, that have caused me to have multiple aortic valve replacements since age 19. My story on my page tells the journey. Even with recurring surgeries, I will always choose tissue valves. My last surgery (August 2015) was a TAVR. That's a Transcatheter Aortic Valve Replacement. What a miracle procedure! So easy. I left the hospital the next day. It can be done more than once as long as there's adequate space for more valves. I happen to have a large valve and can easily do TAVR again. In fact, my surgeons at Cedars Sinai LA (world renowned hospital) said I can keep doing them for as long as I need to really. Anyway, I only take a baby aspirin each day. Absolutely love the freedom of my life. I'm very active and travel extensively so it's nice to never really think about my heart ❤️. Staying healthy, eating well, and exercising are everything. Either valve you choose will bring more choices down the road (short term or long term). You'll adjust to it either way. There's a lot of debate on here about Coumadin. I have vowed to avoid it forever. Personal choice. Plenty of people do just fine on it. I can only give you my perspective and tell you the freedom I feel without it. Good luck! 🌟
P.S. I'm 45 💛