Terrified waiting room 20 month / almost go time.

[harrietW]

20 months ago l ead diagnosed with RHD My Mitral valve in moderate to severe Aorta in mild to moderate. Today mitral sever aorta on the cusp/ sever @ the time. April 2012. Diagnosed in Nov 2014 ILD December cardiologists told me to go and have a good Christmas that condition has worsened and she would see me the 1st of January appointment on the 26th of January indicated to me that she would start the workup for open heart surgery. I assumed l would need another echo a week prior to appointment as usual but apparently they don't need one. I went from every 5- 6 monah echo to 3 mth and now they don't need one. My appointment is a follow-up and start the work up for OHS.
when I was first diagnosed I was very very sick with upper respiratory infection. Since then I went through a period of grieving and mourning. I was told I would have to have open heart fairly soon. I was terrified my anxiety level was through the roof and l went through also periods Of having faith and trusting in God that everything would be ok and so I've lived my life for 2 years or coming up on 21 months living each day like it was my last although I haven't been feeling that great in the last 3 weeks I am like over the top full of anxiety half the time and the other half I trust that everything is going to be ok. What on earth does start the workup mean how long does it take once they start the workout I haven't got a date. I'm assuming that they will start to set me up with the consultation with the surgeon blood work etc. quite honestly I have had terrible symptoms I have for about 4-5 years now breathlessness exhaustion I fall asleep on a dime so lacking of energy continual upper respiratory infections. I am a 54 year old female I have gained a tremendous amount of weight in the last 20 months due to the fact that I not able to do a lot. I'm limited by breathlessness and my face goes numb lip go numb tones or irreguI heart beats and times when my chest feels like its going to explode. l have really really had symptoms all along.. Does anybody have any advice for me I know I need to breathe deep, I need to trust that everything is going to be ok, I have to have my MVR and Aorta- mechanical vales and a couple of stints apparently. I am terrified actually all week .. its 10 more days before I find out how and where we go from here and I'm having a hard time with it any advice anybody any idea how long before it's go time once they say work up.!!
I know most of this it is pretty scrambled I'm just talking my thoughts, any anything anybody can say that will help me I would be so grateful. I am starting predict the outcome. my head wouldn't stop ... I feel like a crazy lady. Lol thanks guys.

 

[pellicle]

You'll be fine. Just remember that in a years time you won't know why you were worried now

Best Wishes

 

[harrietW]

Thank you pellicle. I appreciate your words of encouragement.
This whole thing has sure been a process. Sigh
Your right l am so looking forward to next year. Lol

 

[AZ Don]

OHS is generally not as big a deal as most people think it is. The rate of mortality and complications are extremely low and most people are out of the hospital in 5 days and resuming their life within a couple months. I was walking a mile a day by the time I got home. I understand the nervousness but you will be so glad to have it over with, and you will probably feel better as well. I did not have symptoms but people that do generally feel much better. Even people without symptoms often feel better.

Re. the work-up. They will likely order blood work, EKG, chest x-ray, possibly a CT or MRI if you haven't had one recently and probably a coronary angiogram. I had an echo and CT with which my condition was diagnosed and then went straight onto the path for surgery. I had the angiogram and chest x-ray a week or two in advance and then blood work, EKG?, and probably another chest x-ray the day before. You may be able to pin your Dr. down to a date for surgery at your next appointment. Most of the pre-op stuff is pretty routine so the date is mostly a matter of scheduling the Dr. and operating room.

 

[big_L]

Most of us go through some stage of anxiety pre-surgery, of course the severity differs for each person. When I found out that "IT"S TIME", the next few weeks were pure hell for my wife and I. Yes, the feelings of mortality mixed with worries that I'm worrying too much.

It's such a routine surgery. It's another day at the office for the surgical team. For us, it should be just a speed bump in our lives. Yes - a big honking speed bump, but chances are you will look back on this a few months from now and be so much better.

I can't believe how much better my 'breathlessness' is post-surgery. And I was convinced that I was asymptomatic pre-surgery.

Good luck, you'll be fine. Yes - they'll be some tough days and a few sleepless nights.

Talk to your team, ask lots of questions, try to relax, pray/meditate. I found relaxation tapes to be quite helpful at bedtime pre-surgery.

 

[harrietW]

OHS is generally not as big a deal as most people think it is. The rate of mortality and complications are extremely low and most people are out of the hospital in 5 days and resuming their life within a couple months. I was walking a mile a day by the time I got home. I understand the nervousness but you will be so glad to have it over with, and you will probably feel better as well. I did not have symptoms but people that do generally feel much better. Even people without symptoms often feel better.

Re. the work-up. They will likely order blood work, EKG, chest x-ray, possibly a CT or MRI if you haven't had one recently and probably a coronary angiogram. I had an echo and CT with which my condition was diagnosed and then went straight onto the path for surgery. I had the angiogram and chest x-ray a week or two in advance and then blood work, EKG?, and probably another chest x-ray the day before. You may be able to pin your Dr. down to a date for surgery at your next appointment. Most of the pre-op stuff is pretty routine so the date is mostly a matter of scheduling the Dr. and operating room.

Thank u AZ Don
It has been about 20 mth since my last Tee MRI chest ex. So yes that is probably time for a redo .. Thank you !
It is possible my cardioligist office has been working on a sergeon referral. Calgary first option, Edmonton a possibility. Thank you l feel less anxious today. I am so up and down! Seems some rest always helps.

 

[harrietW]

Most of us go through some stage of anxiety pre-surgery, of course the severity differs for each person. When I found out that "IT"S TIME", the next few weeks were pure hell for my wife and I. Yes, the feelings of mortality mixed with worries that I'm worrying too much.

It's such a routine surgery. It's another day at the office for the surgical team. For us, it should be just a speed bump in our lives. Yes - a big honking speed bump, but chances are you will look back on this a few months from now and be so much better.

I can't believe how much better my 'breathlessness' is post-surgery. And I was convinced that I was asymptomatic pre-surgery.

Good luck, you'll be fine. Yes - they'll be some tough days and a few sleepless nights.

Talk to your team, ask lots of questions, try to relax, pray/meditate. I found relaxation tapes to be quite helpful at bedtime pre-surgery.

Thank you big_L
Facing our /my own mortality is terrifying. I went through that 20 mths ago they made it sound then like surgery was only days away. I mourned my life told everyone how much l loved them and what they meant to me in my life. Essentially said my goodbye .. I seemed so much sicker back then and really did think each day could have been my last. Then last summer l felt great .. Now not so much.
Thx for your input. I seem to be driving myself nuts .. I live alone and really have no one to talk about my thoughts and for feelings with. Its crazy. I have an old therapist lm trying to see. .. My friends Dont get it or they are so over it.
Thank you guys it really does help to say it out loud.

 

[epstns]

Harriet, I know something of what you're feeling. I was in The Waiting Room for almost 10 years from my initial diagnosis until my valve replacement in 2011. You're feelings are entirely normal. We all go through the same process. It is a lot like the psychologists' view of the multiple stages of grief (google the Kubler-Ross model of the stages of grief to get the details). Different people experience the stages at differing intensities, but we do go through them. It is natural, and it can be managed.

Once you understand the process you are going through, you can get on with it. You should learn all that you can about your condition, prognosis, and treatment plan. When you have a clear picture of your future, you can develop your detailed plan - to include what procedure(s) you will need, where they will be done, by whom, when, etc. You can also begin to develop some alternative plans in case anything goes astray. Once you have a plan, write it down, then "work the plan." What I mean is, once you have your plan written down with steps to be taken and dates to do them, then you can stop worrying about it and get on with life. Only worry about this plan when it is time to do the next step. Let the situation "soak" in your subconscious mind when it is not time to actively do anything. You will be surprised at how much more relaxed you can become when you only have to be focused on the plan in small installments. The rest of your time belongs to you - it is your life.

As the others have noted, heart surgery is surprisingly safe these days. For most of the valve-related procedures, depending upon the individual patient's co-morbidities, the odds of your survival are very, very high - somewhere in the range of 98% plus. That's up there with the survival rates for an appendectomy, I think.

And yes, you will read some "horror stories" about what seem to be very bad experiences in valve surgery. My own experience was a minor train wreck, but let me tell you now that within a short time after surgery I was back at work full-time and hardly anyone could believe that I had such "serious" surgery.

Hang in there. Learn all that you can. Make your plans, then just work the plan. It will all work out just fine in the end.

 

[harrietW]

Thank you epstns.
You guys are great. Educating myself was an obsession in the beginning. I would be on the net constantly. Up watching ohs vr half the night, at some point l had to stop. Left it alone for awhile and Now again back at it.
I have tried to plan a few things and have a to do list.
I thank you all for your input as it does help. I am sure l will be a regular visitor here. I have been creeping this sight for a bit now just never posted. A girl can never have to much support when facing one of life's biggest events . thx u

 

[MurmurSinceForever]

Hi harrietW, I feel for you right now. I can relate to the endless mind talk and anxiety you must be feeling as you wait for your appointment. I am same gender, similar age (50) and similar healthcare system (Ontario), so maybe I can offer my perspective. I am 7 weeks post-op for aortic valve replacement and feel great. I was followed for 5 years and on Sept 16/14 I failed a stressed test at the cardiologist office and started the work up for surgical consultation.

For me the timeframe was as follows: 2 weeks from stress test cardiac catheterization (to check my arteries which were gladly clear), 3 weeks later new echocardiogram for surgeon, 2 weeks later meeting with surgeon, 3 weeks later surgery. That is 10 weeks from the time the cardiologist said it was time to the surgery. I was fortunate that there were no delays, every appointment and timeline was achieved.

Like Steve I too find comfort in having a plan and working it. But I soon realized that the medical part was not my plan to work. I actually found comfort in having the medical system develop and work the requirements and schedule for me and to just make sure I was a compliant patient and showed up for all appointments and made sure I knew what was expected of me. My biggest role was to decide which valve type and the surgeon gave me until I was rolled into the operating room to let him know.

I know right now you are thinking about the surgery but I say trust the medical team to handle all that and focus your efforts on following their instructions and looking at what you will need post surgery.

I did worry about recovery. I am self employed with my husband and worried about being off work without short term disability insurance. So that's where I put my planning efforts. By doing as much as possible ahead of time and making sure I communicated with my husband for everything that would be required while I was recovering helped to pass those 10 weeks without obsessing about the surgery.

My worry for you is that you are alone. I did rely on my husband for more than covering my work. He cooked the big meals (and I mean big – the poor guy had to cook Thanksgiving and two Christmas dinners), although even the first week home I could make breakfast and lunches for myself. He drove me everywhere for 7 weeks and went with me on my walks outdoors in the Ontario winter. Do you have anyone who can help you out in the first few weeks at home? The lifting restrictions are serious. Maybe you can plan on cooking some meals for the freezer while you wait. Can you line up some friends to come and take you for walks and drive you to appointments? Also, make sure you have some furniture for reclining (you can rent a chair) and/or a bed wedge for sleeping.

Stay positive! You deserve to feel better and this surgery will make that happen.

 

[knotguilty]

Harriet, don't worry yourself too much. We all have been there and we all understand how scared you are. I would bet they may want you to have a cadiac cath done to make sure when they go in you don't have any blockages. It helps determine how they will procede. But you will be fine. It is a lot to take in. Hopefully you have a good support system, and love and faith will get you through. Do stay positive, it makes a big difference.

 

[harrietW]

Hi harrietW, I feel for you right now. I can relate to the endless mind talk and anxiety you must be feeling as you wait for your appointment. I am same gender, similar age (50) and similar healthcare system (Ontario), so maybe I can offer my perspective. I am 7 weeks post-op for aortic valve replacement and feel great. I was followed for 5 years and on Sept 16/14 I failed a stressed test at the cardiologist office and started the work up for surgical consultation.

For me the timeframe was as follows: 2 weeks from stress test cardiac catheterization (to check my arteries which were gladly clear), 3 weeks later new echocardiogram for surgeon, 2 weeks later meeting with surgeon, 3 weeks later surgery. That is 10 weeks from the time the cardiologist said it was time to the surgery. I was fortunate that there were no delays, every appointment and timeline was achieved.

Like Steve I too find comfort in having a plan and working it. But I soon realized that the medical part was not my plan to work. I actually found comfort in having the medical system develop and work the requirements and schedule for me and to just make sure I was a compliant patient and showed up for all appointments and made sure I knew what was expected of me. My biggest role was to decide which valve type and the surgeon gave me until I was rolled into the operating room to let him know.

I know right now you are thinking about the surgery but I say trust the medical team to handle all that and focus your efforts on following their instructions and looking at what you will need post surgery.

I did worry about recovery. I am self employed with my husband and worried about being off work without short term disability insurance. So that's where I put my planning efforts. By doing as much as possible ahead of time and making sure I communicated with my husband for everything that would be required while I was recovering helped to pass those 10 weeks without obsessing about the surgery.

My worry for you is that you are alone. I did rely on my husband for more than covering my work. He cooked the big meals (and I mean big – the poor guy had to cook Thanksgiving and two Christmas dinners), although even the first week home I could make breakfast and lunches for myself. He drove me everywhere for 7 weeks and went with me on my walks outdoors in the Ontario winter. Do you have anyone who can help you out in the first few weeks at home? The lifting restrictions are serious. Maybe you can plan on cooking some meals for the freezer while you wait. Can you line up some friends to come and take you for walks and drive you to appointments? Also, make sure you have some furniture for reclining (you can rent a chair) and/or a bed wedge for sleeping.

Stay positive! You deserve to feel better and this surgery will make that happen.

murmursinceforever thank you so much I totally can relate to everything you said those exact things have been going through my head. I've been trying to figure out how I can get a recliner in here I thought about renting one if I could I have two big club chairs that I have a hard time getting out of them as is and for sure couldn't sleep in them. A bed wedge sound something that I should look into.l actually just bought a new mattress two weeks ago for this big event. I have some wonderful wonderful friends I live in a small community of magrath the women here are wonderful I just moved here in June because of maintainance free livig no snow shoveling, no grass cutting and affordable. Knowing what lies ahead. I have family a son and young wife just married. Living in Calgary where surgery will take place. But honestly l want to come home afterwards to recover. I am going to look into home care just for my first few days home and go from there. There is a beautiful canal here that l have learned to love to be and walk through. Thx u 10 weeks is kind of what l thought or slightly less. You really helped me to know lm on the right track. And your right l have to leave what is out of my control in God's hand . I have a great team here. Internalist cardiologist family doc. My really issue is surgeon that l don't know. I will have to trust l am in the right hands. XX GLAD YOU MADE IT AND ARE WELL !

 

[harrietW]

Harriet, don't worry yourself too much. We all have been there and we all understand how scared you are. I would bet they may want you to have a cadiac cath done to make sure when they go in you don't have any blockages. It helps determine how they will procede. But you will be fine. It is a lot to take in. Hopefully you have a good support system, and love and faith will get you through. Do stay positive, it makes a big difference.

Thank you KnotGuilty
I agree a positive attitude is half this battle here, in fact l am more positive this last two years than at any other time in my life. I know that if fear takes over l am not living in faith. So yes thank you l understand the value of staying positive. I was able to build a small lash studio here in my new little town and for the last few months was to busy and exited to be worrying about things .. l at least know that l have been successful doing something to l absolutely love to do and hope l can continue post op. Thank you so very much for your support !

 

[Northernlights]

Dear Harrietw
I must admit I would strongly suggest you plan to stay at least a couple of weeks in Calgary with your son, even though I understand that you would like to get home as soon as possible. The surgery is very safe, but 2 valves and stents is quite long and is likely to be exhausting. People vary in how quickly they recover ( it's got an awful lot to do with how you respond to the drugs and the anaesthetic). I am 4 weeks past surgery and have only really started feeling better in the past few days. I can now walk for 20 minutes and my incision has healed very well, but before this week I certainly could not have coped alone, or indeed with a long journey - I was far too weak. I am 60, in previous good shape, and I know others have recovered more quickly, but the problem is there is no way of knowing in advance how easy or hard you will find it. I could not believe how exhausted and weak I was at first. My own hospital states that you need someone with you for the first two weeks at home after valve surgery. If you find you sail through easily you can always go home earlier.

 

[Paleowoman]

Hi Harriet, I concur very strongly with Northernlights. I was 60 when I had my heart surgery, just one valve, nothing else. I was extremely fit before surgery, even walking six miles the day before admission and doing some weight lifting ! At 2, 3 and 4 weeks I was very unwell. I was nearly readmitted to hospital. This operation is a huge strain on the body. I know some people seem to recover very quickly which I think is wonderful, but you already have other conditions and that will have some impact on your recovery. I had to have my husband take me to doctors several times during the first four weeks, no way could I have used public transport. Some people go to a recuperation hospital if they are on their own - is that an option for you ?

Wishing you well !

 

[harrietW]

Dear Harrietw
I must admit I would strongly suggest you plan to stay at least a couple of weeks in Calgary with your son, even though I understand that you would like to get home as soon as possible. The surgery is very safe, but 2 valves and stents is quite long and is likely to be exhausting. People vary in how quickly they recover ( it's got an awful lot to do with how you respond to the drugs and the anaesthetic). I am 4 weeks past surgery and have only really started feeling better in the past few days. I can now walk for 20 minutes and my incision has healed very well, but before this week I certainly could not have coped alone, or indeed with a long journey - I was far too weak. I am 60, in previous good shape, and I know others have recovered more quickly, but the problem is there is no way of knowing in advance how easy or hard you will find it. I could not believe how exhausted and weak I was at first. My own hospital states that you need someone with you for the first two weeks at home after valve surgery. If you find you sail through easily you can always go home earlier.

thank you so much Northernlights. I am so happy to hear that you are in week 4 of your recovery on your journey back to health. So much to think about so emotional. you're probably a hundred percent right about staying with somebody for a perood of time.I hate being a burden on people I've been on my own almost my entire life.especially when you're not feeling well I really want to be at home, but I get it ladies!! I've heard they take your drivers license away also for a period Of time. They cancelled it and took it away from me when they found out I had a heart condition over a year ago l had to fight to get it back and I have until May of this year. I have to have it renewed with the doctors ok yes I have other health problems interstitial lung disease my lungs work at about half the capacity my biggest fear is getting off the the heart lung machine and back into normal breathing. I have severe sleep apnea so yeah there is definitely some concerns for sure.I am not the picture of health l once was. Maybe a care Centre will have to be an option for me. You are obviously with your experience much better to speak to these concerns. Thank you ! I am the Queen of denial. Most appreciated.

 

[Eva]

I have severe sleep apnea so yeah there is definitely some concerns for sure.I am not the picture of health l once was. Maybe a care Centre will have to be an option for me. You are obviously with your experience much better to speak to these concerns. Thank you ! I am the Queen of denial. Most appreciated.

HarrietW,

You will definitely need your CPAP machine after the surgery. MAKE SURE THEY CONNECT THE OXYGEN TUBES TO IT if you'll use it soon after surgery. No one told me other than that I needed to use it. Unfortunately, my oxygen level dropped very low that night and the 'uncaring' nurse told me this in the morning instead of waking me up and do something about it when he noticed that!!

So, remember to demand this! Good luck.

 

[harrietW]

Hi Harriet, I concur very strongly with Northernlights. I was 60 when I had my heart surgery, just one valve, nothing else. I was extremely fit before surgery, even walking six miles the day before admission and doing some weight lifting ! At 2, 3 and 4 weeks I was very unwell. I was nearly readmitted to hospital. This operation is a huge strain on the body. I know some people seem to recover very quickly which I think is wonderful, but you already have other conditions and that will have some impact on your recovery. I had to have my husband take me to doctors several times during the first four weeks, no way could I have used public transport. Some people go to a recuperation hospital if they are on their own - is that an option for you ?

Wishing you well !

thank you Paleogirl. Anne I also appreciate your input I think I need to rethink some of these things. I think coming home will probably be a plan B at this point of planning and I think probably to find other accommodations or a Care Center for the first few weeks.. Especially and I say care center because I think it's safe to come back to Lethbridge and that's where all my doctors and physicians are rather than staying in Calgary. I think they transport you back by ambulance some say they do some say they don't. I don't know all of these are questions and answers that I will want to have set my mind at ease before we get there. Oh dear well you are all so great and l thank you all. I definitely am getting educated here. And l thank you for that !! Lots to look into l guess that's why they don't real tell you much prior to just the few weeks pre-op. That way you have something to keep your mind occupied. Xx

 

[AZ Don]

Re. driving, typically you have to wait at least 6 weeks after surgery to get clearance to drive. They want to give the sternum a chance to heal before putting it at risk behind the wheel.

 

[cldlhd]

That makes sense but they say if all goes well I'll only be in the hospital for 5 days then a 25 mile drive home My wife will be driving but I imagine the risk to the sternum would be the same. I guess that also means no riding in a car even as a passenger for 6 weeks?