Up- date / Re-op has anyone gone from mech to tissue

[harrietW]

Hello friends

update on second opinion new cardiologists at the request of my surgeon recap possible mechanical aortic removal and tissue valves for aortic mitral ( existing repair ring prosthetic) and now tricuspid

Reason continual bleeding due to angiodysplasia which was diagnosed after open heart surgery and valve repair and replacement proximately 90 transfusions in 2.5 years also have pulmonary hypertension interstitial lung disease which includes COPD the works and sleep apnea anemic.
drove to Calgary went to appointment at South Campus was seen by a nurse for vitals then seen by a nurse practitioner who has been at all of my follow-ups with my existing heart surgeon that did repairs and replacement on valves January V 2016
spent about 20 minutes with nurse practitioner going over the period of time since our last follow up which was May 4th at that appointment my surgeon suggested that we go in and replace valves to tissue to get me off Warfarin
he wanted me to see a new cardiologist for a second opinion. Thinking this appointment would be 6 or 8 months down the road I figured I would be fall or winter even before I had this appointment. Nurse practitioner followed my blood work and my INR she called for an early consultation with the cardiologist I was very surprised and how informed and update dated the cardiologist was. I expected a 10 minute consultation which turned into about an hour and a half with nurse practitioner cardiologist and another medical assistant as we went over my complete medical history including the Last 5 Years and two years or two and a half years since surgery she asked for my story we went over everything with a fine-tooth comb at that point the cardiologist said that she had reviewed everything and without even meeting me or hearing my story her decision was very simple that we had no choice but to go back in and replace these valves no brainer. Of course I expressed my fears and fact that I swore I would never go through this Hell again and how traumatizing it was and then I felt I hadn't recovered from the first surgery we talked about my quality of life and simply not having a life and if I was to not make it and go on the table then what did I have to lose. I don't have a life now as a hundred percent truth.
She has a very good points I can't continue to live like this I don't want to live like this if I make it then hopefully I'll have a chance at a better life than what I've had for the past 5 years it will be God's will for sure either way.
This appointment was very emotional very stressful and very exhausting. They had made an appointment for a new Echo the other one was only 2 months old but she's concerned about my tricuspid valve and the fact that it's leaking she wanted a better look at it so it would be three valves she's going to consult with my previous surgeon the new surgeon herself the whole team including my internalist come up with a plan and if they decide to do this and if I agree to do this it will happen very soon.
Can't say I'm too excited about it and I can't say I'm thrilled but at the same time I feel somewhat of a sense of relief that there may be hope for a better future. It was made very clear that I was going into this with the odds against me they are not good but neither is the way I live today. She cannot believe that I was taken off my Warfarin for 3 weeks cold turkey no bridging and then put back on it the same way cannot believe that I didn't stroke which we talked extensively about.

My apologies that this is so long I voice recognition wrote this I can't type just works better for me this way so it's a lot to read for anybody who's interested. I will keep you updated I will probably hear from them as soon as next week or 10 days about what our plan is going to be going forward I'll keep you updated.

 

[Jimmyk]

harrietW,
Wishing you good health and prosperity with any decision you make.
This is a topic that I have brought up myself the last couple of days.
I’m currently in the hospital now recovering from bleeding, transfusions, esophagus surgery,and now trying to get my inr in therapeutic range so I can go home. I believe this is day 12 here in the hospital.
While here, my heart surgeon visited me, I told him that this was the 3 rd time in the hospital over the last 6 months. After asking if there’s anything I can do to stop these visits. Without thinking he said that we can change my mechanical aortic valve to a biological one. At first I thought he was joking, but he assured me it was quite common.
Right now the cardiologists are watching another leaky valve, and an aortic aneurysm.
So there’s a lot to think about over the next month or two. Sorry if I’m starting to ramble, but we’re both going through kind of the same situation.
I would be very interested in knowing what choice you come up with.
God Bless!

 

[harrietW]

Jimmyk
Yes seems to be quite common.
I read your update the other day hope you get to where you need to be so you can get home.

I would rather be anywhere than in hospital.

Take good care and heal well ..

I will update as soon as l here back from them..
My decision certainly is not going to be an easy one like I said I feel like I haven't recovered after two and a half years then I would really hate to go through all of that to be in the same boat a year or two from now

Xx

 

[Paleowoman]

Hi Harriet - at last you have met with a cardiologist who seems to have taken a good interest in what has been going on with you. You're right you cannot carry on as you are. I wish you strength and courage for the future. xx

 

[ottagal]

Harriet, I can imagine what an emotional roller coaster this has been and continues to be. I am glad you had a good session with the NP. I am praying for all to work out in your favour. Sending you hugs and my very best wishes,
Keep us posted.

 

[harrietW]

Paleowoman hi hope you are well !
Thank you and you are right .. I still cannot believe they spent so much time with me. I felt validated for the first time is l can't remember when. Like l was important enough for them to hear me for the first time.
Xx

 

[harrietW]

ottagal
oh my goodness yes
Thank you so much for your hugs and well wishes.
Deffinetly will keep you all posted Xx

 

[Jmprosser.lab]

Wow, I am so sorry to hear about the issues you’ve been having. This absolutely is a difficult decision, but I can’t imagine going through all of that. I’m glad they spent so much time with you and you finally got a little validation. You say the odds aren’t on your side, but exactly how risky is the surgery? Feels like I’m always reading such good statistics on these surgery’s

 

[harrietW]

Jmprosser.lab
hi so yes I'm very grateful that they spend so much time with me I have not heard back from them I did stop at my family doctor and pick up a copy of my echogram that they did which doesn't really match up to the other two that I've had recently so I don't know why the difference in Echo grams. Regardless of that they have not given me a an actual number or percentage I do believe it is a fairly common procedure as far as open heart surgery switching from mechanical to tissue valves however because of my complexed health issues it raises my risk factor substantially. I think generally they start with one to 3% risk factor which is extremely low and then if you're a smoker they add percentage and if you have lung disease they add a percentage so what every health issue or factor the risk just continues to go up.
it's been a little bit stressful few days here I drove to the mountains today to try and clear my head a bit and got up there and couldn't breathe so I had to come home. I will keep you posted hoping to hear something back this week.

 

[harrietW]

Hello friends just an update on visit with Cardiology so I think I explained that I went to Calgary had another assessment with a new cardiologist her opinion is that there's no question that they need to go in take out those mechanical valves and replace with tissue valves. She was going to consult with my first surgeon the referring surgeon the surgeon that would possibly do The Re-Up and my internalist. She was going to consult with them come up with a plan and my internal med doc that I've been seeing for the past two and a half years who's been managing my bleeding issues has a great concern and thinks that we absolutely should not even consider open heart surgery .. Because of the enormous risk factor. So I have conflicting opinions on where we go from here and the only reason I know it is because I managed to get my hands on the letters. Nobody has approached me nobody has asked what I think we should do from here nobody has said this is been put on hold I'm only going off of the communication on that. which I got between the doctors so I will follow up and see what happens once someone officially contacts me. I believe they will further consult to come up with an unanimous decision.

 

[pellicle]

Hi Harriet

hope you're doing better ... although this doesn't seem encouraging ...

.... She was going to consult with them come up with a plan and my internal med doc that I've been seeing for the past two and a half years who's been managing my bleeding issues has a great concern and thinks that we absolutely should not even consider open heart surgery

Hoping for a good outcome

 

[harrietW]

why was my last post marked as spam ??? & waiting for a mediator to approve it

 

[harrietW]

I tried reposting and it was denied ?? Anyone know what's going on ?

 

[pellicle]

I tried reposting and it was denied ?? Anyone know what's going on ?

same bullshit I've been complaining about for a few years now ... everyone gets it, even superbob

For instance:
http://www.valvereplacement.org/for...y-dark-circles-under-eyes?p=880982#post880982

http://www.valvereplacement.org/for...79889-post-rejected-because-of-spam-suspicion

heaps more

 

[Paleowoman]

I tried reposting and it was denied ?? Anyone know what's going on ?

Hi Harriet - there appears to be an automated moderating software which picks up certain things it suspects might be spam. In my experience it doesn't like more than two links posted within a message,,nor does it like certain links, though this carries no rhyme or reason, for example, last week I made a post which had a link to another forum's main page but twice the automated spam thing denined my post, but when I changed the link to a different part of that particular forum it was fine. The other thing the automated moderating software doesn't like is if I edit a post too often, it gets suspicious then. To get aroud all this I always copy my posts before I click 'Post Reply', or I write the post elsewhere, save it, copy and then paste it, that way I can change the post if the forum software rejects it. It's a very sensitive spam moderator !

 

[jwinter]

Harriet, I continue to follow your life story as we have a lot of similarities with the bleeding issues. In hindsight, as in last night I even mentioned to my son that all my problems came about after my first surgery (porcine valve) and have only let up the last two weeks. I lost count of how many transfusions and hospital stays I had. I will tell you that without having a valve replacement I am in over 700,000.00 this year alone. Lot of money, thank the Lord for insurance, and time taken away from living my life as I would like to. It IS the quality thing.

I can be of little help on your diagnosis and plan going forward, as my credentials in the medical field are not certified, BUT I do know that being informed of your body and then stepping up and being heard are the key. I even asked about stopping all treatment and just living out my days. It was then that I felt validated and they really came across for me. Speak up but have something to back up your questions and statements. No one is going to help us just by making appointments and being there. Read all you can, use this forum's invaluable information, and keep pushing on.

I have just celebrated my second week off from transfusions and ER visits from the last 10 months. It is great to say that and I pray for good days ahead.

Proper diagnosis and a plan going forward. This old crap about it should be ok now but we don't have any real answers is NOT good enough. I had a fill in doctor that said I had a bad bladder infection that regular antibiotics (Bactrim) would not stop in 4 days so he put me on a very strong one that is for antibiotic resistant infection........bad move.......I ended up with another GI bleed just from that. I swear I learn lessons all the time! Let those part timers have their say but question everything they do and go back to the specialists! That is why they get paid the big bucks!

I would also feel I didn't do this topic justice if I did not tell you that my porcine valve only lasted a little over 4 years as my body didn't like it, and being made of tissue, attacked it and stenosed it closed. Others have no problems but I just have to show both sides. Does my mechanical valve leak? Possibly a little blood is lost there, but just had annual cardio visit and Cardio doc says it is a wonderful valve,, beating very strong. Best thing she told me was that it requires very little maintenance once put in. She said they constantly have to test the pig and cow valves but next year or maybe even two years they may do another echo on mine. Through all my trials my only thing consistent has been this ON-X. Oh, and they have put it through the works!

Take good care of yourself, Harriet. This one is all about YOU and you are your own best advocate. Do drop by with updates as we are all concerned and hope only for the best for you!

 

[harrietW]

Pellicle/ Ann
Not cool ..
l did copy and paste it denied me l will try again to get out my update thx

 

[harrietW]

Pellicle hello hope you are well enough ..
upon Awakening this morning the first thing I received was a phone call from Foothills from my potential surgeons assistant and the assistant from my surgeon from two and a half years ago they have set an appointment date for September 10th to go for a consultation with the new surgeon / Dr that would potentially replace my mechanical aortic valve and root mitral repair to tissue nothing was said about the tricuspid valve though the cardiologist was concerned about that and thought that would be a potential tissue also. When I was on the phone we laughed and joked and after getting off the phone I became very conflicted and fearful and then relieved and in deep thoughts most of the day. I'm not sure what to think to be honest. Absoulutly exhausted all the time hemoglobin is low 80's and I'm waiting patiently for it's a drop to at least 70 or below in order to be transfused so I'm literally walking around in limbo for weeks sometimes on end in the 70s and 80s Zero Energy my heart starts to act up my INR Rises obviously when my hemoglobin is low I sleep 16 hours at night I could goes to bed at 6 so very concerning to me that I have to live the rest of my life like this and it does feel like the only option to do tissue replacement with a very high risk. I go nowhere I do nothing zero social life I go to my studio and I come home and when I have enough energy I drive to Calgary to visit with my mother and my son grandson and daughter in law. I went to the mountains the other day which is an hour drive from here I was there all of one hour and I had to come home. When my blood is low my legs don't work properly I'm in pain I'm nauseous all the time and I hate my life the way it is. It is concerning that my internalist is not an agreement with two surgeons and a cardiologist but here's my thought if I don't make it I don't make it would be better than having to live like this. My biggest fear is having to recover after surgery cuz that is how was out the first time and I don't expect it to be any better the second time seems like pretty drastic measures to stop bleeds and get off warfarin but I have no other alternative is no other options no other input. So I will go up to my appointment see what he has to say I mean risk factor I don't really need a number because for two and a half years I've told me I would never make another recovery and now it seems like it's kind of the only choice I have or to continue to get a 40 or 50 transfusions a year
although altimate the decision is going to have to be mine any input would be greatly appreciated
any input would be helpful.
Thx u

 

[harrietW]

Yay !!! It worked today .. Strange l had that problem before l voice text everything and copy because l am just not good at rewrites hahaha !!

 

[harrietW]

Jwinter
seems like more and more that we have the same issue bleeding issue have they not ever diagnosed you with angiodysplasia is all through the GI.
a recent letter from my internalist to the cardiologists in response to possible tissue valve replacement

"he writes Harriet's main issue is ongoing Gi bleeds for what she is transfused independently.
she has had multiple attempts at endoscopy to try and find sources of bleeding certainly though we feel this is likely angiodysplasia even with recent argon plasma regulation she has continued to bleed until this is resolved I have great concerns about her proceeding with any type of cardiac surgery certainly it would be favorable to be able to stop the warfarin permanently with bioprosthetic valves but I don't think we should undertake any cardiac surgery until her hemoglobin has being more stable"

we have tried for over two and a half years now to stabilize my hemoglobin as I just read with you you feel that you have a reprieve of about 3 weeks I have also had that reprieve three times in almost 3 years for 3 week. It slows down are almost to a stop I can get drugs out transfusions because they won't transfuse if you're under not under 70 they have on a few occasions but not generally. So we've had plenty of time I I think to try and regulate hemoglobin with a big fail

I too have concerns about bioprosthetic valve replacement of the longevity. Surely I do not want to go through this a third time somewhere down the road. So much to think about. The last time I had a transfusion I literally got the nurse to pull the needle out of my arm I said I've had it I am done I want to go home she said you have another bag of blood I said I don't give a damn I've had enough take this needle out of my arm and let me go and I was prepared literally to come home and bleed to death or die whatever however. That's how fed exhausted I am. So l totally understand you wanting to just live out your days .. I say that all the time. My bleeds are slow but steady at the moment l know this is only temporary.
l have lost at time 3 units of blood in less that 2 hours on many occasions some time with in 24 hrs and sometimes a week .. Predictably unpredictable that's what I call it.

Jwinter did you not just have an issue with your esophagus I'm thinking that was going to solve the problem with the bleeds obviously it hasn't it may have slowed you down I don't know but it's just all too much too much for me Fed Up done and then this proposal now with a new surgery has me thinking more on the side of surgery rather than this side of caution I can tell you is one hell of a predicament to be in.