Do you ever wonder if your going to make your Sergeon Consultation

[harrietW]

Hello friends, been awhile since l've posted although l read several times a week. Thank you to all of your for you experience and knowledge. I would truly be lost without being able to come here. Gives me a sense of relief. So Thx u all for that.
l am awaiting a consult with my Surgeon Sept 22/15
. . And some days l wonder if l will even make it that long. I will be having OHS to Replace both MVR and AVR l am severe Mitral and moderate Aortic both stenosis. My day increasingly become tougher and tougher. From the moment l get up til l go to bed. Pure exhaustion dry cough keeps me awake my heart literally stops several times a night sever apnea. Breathlessness continues to increase dramatically while dosing off every time l sit down for 5 mimutes. Swelling hands feet aching legs and headaches. I have Not passed out YET but feel like l will any moment now that feeling has been for a couple of yrs.
it's going on 2.5 /3 yrs since being diagnosed with RHD and here l wait in anticipation of how things will play out while turning it all over to God at the same time.
l am a Lash artist/Nail artist and makeup artist with my own business with no one to replace me while l go through pre and post surgery.
With all of that it has been a stressful 6 mths with my mom in hospital 7 mths my sister passed away 2 mths ago and l drive 6 hrs once a week to see my mom whom we just moved to a home last week.
I am sure everyone heere has gone through similar situation.
What happens if you come to a point if passing out .. do they proceed with emergency surgery ? ??? I guess is a real question for me. My heart doc keeps asking me if l have passed out yet

 

[pellicle]

Hi

...
With all of that it has been a stressful 6 mths with my mom in hospital 7 mths my sister passed away 2 mths ago and l drive 6 hrs once a week to see my mom whom we just moved to a home last week.

sorry to hear about that. I am sure its a difficult and stressful situation. My only advise is to try not to think about the future, just manage what's on the plate for today.

In time things return to a more even footing ...

I am sure everyone hear has gone through similar situation.
What happens if you come to a point if passing out .. do they proceed with emergency surgery ? ??? I guess is a real question for me .

Well its really unlikely you'll pass out (well unless you're overly anxious and have low blood pressure too). While waiting for my one of my valve changes I could do things (sport) till I lost my periphery vision. They call it "tunnel vision" which happens as you're going Hypoxic. I mentioned this to my surgeon who shook his head and observed that I always push things to the limit.

Well, how else do you know where they are?

I think its most likely you'll get shortness of breath and general lethargy before you get to passing out.

My condolences on your loss of your sister.

Best Wishes

 

[harrietW]

Thank you pellicle !!
Oh dear well l do have both low blood pressure and have gone through some very stressful times. I also have a blockage 80% somewhere between my heart and left shoulder which is couseing me a great deal of problems. Can you believe up to 24 mths to see a neurologist my file has been sent to a central data Centre and l will be sent to first available appointment in Alberta. Also interstitial lung disease so l really hope your right about unlikelyhood of passing out but boy l come so close several times a day sometimes l just think lm going down.
Thank you always for your words of wisdom. Did you ever get your vision back ? I do have what l call spells and very blurred vision along with dizziness coused both shortness of breath but also pernisus enemia. Hahahahaquite a mess. I will be so grateful to have all of this behind me !
Thx again.

 

[MrsBray]

Wow, that's really tough! I wish I had more advice to give you. You mentioned sleep apnea, so I'm hoping you have a cpap or similar machine? I have sleep apnea also, and use a machine to sleep. I developed the dry cough a few months before my surgery. Maybe you can increase your machine's humidity a bit, and prop yourself up with an extra pillow as well. It's not easy to relax at night and get some good rest if you're constantly afraid you won't wake up, I know.

You could come to Florida for surgery! All the Canadians and US retirees are up north right now so our hospitals are pretty empty

Meredith

 

[pellicle]

Hi

... Did you ever get your vision back ?

sure, its only loss that comes on as you push hard and after you sit down for a bit (and catch your breath) it comes back to normal.

Its just caused by ones body using oxygen faster than the heart/lungs can provide it.

As always, back off, take a rest and its fine.

 

[honeybunny]

Harriet, you are a very brave woman to be dealing with all you have going on. I agree with what everyone else has said and am sending positive thoughts your way. Do you have someone to be with you for the surgery?

 

[Paleowoman]

Hi Harriet - this all sounds really tough for you. Can you push to see the surgeon sooner ? Can you see your cardiologist ? GP ? I would be going back to the GP or cardiologist to get checked over since there's a lot going on, all impacting on your overall health and heart. The better health you are in when you have surgery the better it is for you.

 

[knotguilty]

I would suggest you call every few days to see if there was a cancellation so you can be seen earlier. And the bad news is you will probably have to wait to get in for surgery too. I know it is easier said than done, but try to stay calm, just knowing you have to have surgery is very stressful. That in itself causes a lot of symptoms. You have to rely on other people during times like this so don't be afraid to ask for help. Everything will work out ok. I'll pray for you.

 

[dornole]

I have RHD also and had severe mitral stenosis with that unrelenting spasming dry cough, especially upon lying down. That was pulmonary edema caused by the valve and also led to the swelling in legs etc. They proceeded to valve repair within a month of me coming in. If your symptoms are anything like mine, I would definitely not want to go through that one week more than necessary.

Make an appt with your cardiologist and describe the symptoms you are having in VERY SPECIFIC terms. "I have a dry hacking cough for a full minute every 5 minutes throughout the night." "I can't go up a flight of stairs without resting for 5 minutes partway." "I am coughing up quarter-sized blobs of blood." "I get breathless walking to the refrigerator." Lie down on the exam table for 5 minutes and show them what the cough is like. If you really have to wait till Sept for just a CONSULT (God knows when surgery will be), ask if there is ANYTHING they can do to give you some relief. Lasix? Oxygen? Some Zoloft just to help you survive emotionally till Sept?

They only have what they can see in an appointment and the information that you provide. . . so do advocate for yourself and try to provide the specific data that scientists and doctors need to make the best decisions for you. It can't hurt to see if you can get an earlier consult or some relief.

Meanwhile sleep upright in a chair . . . hang in there.

 

[Lawdog]

That surgical consult date sounds pretty far out for a symptomatic patient. Try calling the office and asking for an earlier date.

I had an MRI at the beginning of June to measure my AAA and AS. When the AAA came back at 5.0 cm, I was in to see the surgeon the next week. He sent me a week later for a CTA to confirm the AAA measurement and check my coronary arteries. My surgery is scheduled for the second week of August to repair the AAA and replace my aortic valve. You need to keep on the doctor's staff otherwise they will forget about you.

 

[almost_hectic]

That surgical consult date sounds pretty far out for a symptomatic patient. Try calling the office and asking for an earlier date.

I had an MRI at the beginning of June to measure my AAA and AS. When the AAA came back at 5.0 cm, I was in to see the surgeon the next week. He sent me a week later for a CTA to confirm the AAA measurement and check my coronary arteries. My surgery is scheduled for the second week of August to repair the AAA and replace my aortic valve. You need to keep on the doctor's staff otherwise they will forget about you.

My AVR surgery is scheduled for the same week

 

[harrietW]

MrsBRAY
Hahaha Thank you Florida seems like a fantastic idea!
Thank you ! I do have a cpap and maybe it does need adjusting. Pillows l have used 6 now lol for some years. Most a side sleeper. That dry cough l think most be quite sometime now l live in an apartment and it been months ago now that l had 2 neighbors say to me you sure do cough a lot at night so l guess that's part of the gig ! Thank you for your advice and support muchly appreciated. Xx

 

[harrietW]

Hi



sure, its only loss that comes on as you push hard and after you sit down for a bit (and catch your breath) it comes back to normal.

Its just caused by ones body using oxygen faster than the heart/lungs can provide it.

As always, back off, take a rest and its fine.

Thank you Pellicle !
Thank goodness and very good to know. Glad that you are alright and thank you for sharing that ! Xx

 

[harrietW]

Harriet, you are a very brave woman to be dealing with all you have going on. I agree with what everyone else has said and am sending positive thoughts your way. Do you have someone to be with you for the surgery?

honeybunny
Aww thank you ! I think we have know choice but to be brave but l'D be lying if l said l didn't have fear around some of this stuff. Last Dec January Feb l was paralyzed with fear and pushed through it somehow. I just have to believe God has a plan for all of use and l don't believe he's done with me quite yet. Yes my only son and daughter in law will be there for me and for that l am beyond grateful. Thank you so much for the positive thoughts. . A girl can never have enough of them .Bless you Xx

 

[harrietW]

Hi Harriet - this all sounds really tough for you. Can you push to see the surgeon sooner ? Can you see your cardiologist ? GP ? I would be going back to the GP or cardiologist to get checked over since there's a lot going on, all impacting on your overall health and heart. The better health you are in when you have surgery the better it is for you.

Paliogirl thank you ! I was just at both cardiologist 2 actually 3 weeks ago for TEE follow up and they are pushing both for neurologist is now why they have sent to a central bank on Calgary for first and fastest consult and one of my cardiologist is back and for to Calgary and is going to consult with the surgeon in person. So God willing sooner than later. My GP show much concern on Monday when l saw him .. another issue is Nose ear n throat specialist for cronic nose bleeds that Must Be Tended to ASAP because of Machanical Vales and warfrin /C issue .. it is a priority! !
I am pushing from all angles!
Will stay posted .. Thx u Xx

 

[harrietW]

I would suggest you call every few days to see if there was a cancellation so you can be seen earlier. And the bad news is you will probably have to wait to get in for surgery too. I know it is easier said than done, but try to stay calm, just knowing you have to have surgery is very stressful. That in itself causes a lot of symptoms. You have to rely on other people during times like this so don't be afraid to ask for help. Everything will work out ok. I'll pray for you.

Not guilty thank you .. l have learned to ask for help but it is hard. Yes just knowing surgery is fast approaching .. or approaching let's just say can be absolutely stressful. I have gone through the same emotional roller-coaster now about 3 or 4 times in the last say 2.5 yrs and l gotta tell ya it's getting really old. Lol ! I sure do appreciate a good pray. Thank you for that! Xx

 

[harrietW]

I have RHD also and had severe mitral stenosis with that unrelenting spasming dry cough, especially upon lying down. That was pulmonary edema caused by the valve and also led to the swelling in legs etc. They proceeded to valve repair within a month of me coming in. If your symptoms are anything like mine, I would definitely not want to go through that one week more than necessary.

Make an appt with your cardiologist and describe the symptoms you are having in VERY SPECIFIC terms. "I have a dry hacking cough for a full minute every 5 minutes throughout the night." "I can't go up a flight of stairs without resting for 5 minutes partway." "I am coughing up quarter-sized blobs of blood." "I get breathless walking to the refrigerator." Lie down on the exam table for 5 minutes and show them what the cough is like. If you really have to wait till Sept for just a CONSULT (God knows when surgery will be), ask if there is ANYTHING they can do to give you some relief. Lasix? Oxygen? Some Zoloft just to help you survive emotionally till Sept?

They only have what they can see in an appointment and the information that you provide. . . so do advocate for yourself and try to provide the specific data that scientists and doctors need to make the best decisions for you. It can't hurt to see if you can get an earlier consult or some relief.

Meanwhile sleep upright in a chair . . . hang in there.

Dornole
thank you for validating my symptoms for me
I just sent a long response to you and accidentally flagged the post Omg !!
My apologies to you and admin. Please disregard the flag
and thank you for every symptom in which you described ... Xx Hopefully the will post my response in that flagged post so you can read my comments /response thank you so much .xx

 

[harrietW]

That surgical consult date sounds pretty far out for a symptomatic patient. Try calling the office and asking for an earlier date.

I had an MRI at the beginning of June to measure my AAA and AS. When the AAA came back at 5.0 cm, I was in to see the surgeon the next week. He sent me a week later for a CTA to confirm the AAA measurement and check my coronary arteries. My surgery is scheduled for the second week of August to repair the AAA and replace my aortic valve. You need to keep on the doctor's staff otherwise they will forget about you.

Great advice everyone. I sure hope thing go great for you Law dog. You are definitely in worse condition than l and you also will be in my prayers Xx thank you for the advice think l might just take you up on it.

 

[harrietW]

My AVR surgery is scheduled for the same week

Almost_hectic
best of luck to you .. your in my prayer Xx

 

[almost_hectic]

Almost_hectic
best of luck to you .. your in my prayer Xx

Thank you, likewise! Stay strong.