Please help.. need aortic valve regurg surgery...echo revealed severe

[bramma11]

Not my first time on this site…I don’t come on often … sorry for not helping others in-between my rare posts… I am a near 68 yr old woman and have been dealing with aortic valve regurg since 1992…now diagnosed with latest echo the valve is severe…AND, I have questions…

My apologies for the length of this…just need some input…I’d be a fool if I didn’t admit I’m scared…


Had apptmnt with nurse practitioner on June 26 cause my cardio is gone on vacation…but was told that it is likely that my cardio will agree with her assessment of a need for aortic valve surgery cause it is now severe….and, I have several worsening symptoms…

Echo on June 18 revealed my regurg aortic valve is now severe….and, will need surgery

Have some pre-surgery apptmnts already set up (Hemotologist to diagnose what the huge/very large purpura is caused from (taking warfarin after surgery is a concern with having these large bleeding spots) ….

Have apptmnt for COPD breathing test & 6 min walk next week to determine if COPD has worsened in the last 2 years & is more of the cause of worsened short of breath

Still need to be set up with nephrologists for my kidney disease assessment…

And, need to set up apptmtnt for my regular doc for assessment on his end along with latest A1C test for type 2 diabetes which is a definite diagnosis

My cardio has been on vacation, but will see him on July 7, 2014 , Monday & he then, I was told, will set up a TEE test or angiogram AND OR ?????



MEDICAL INFORMATION/BACKGROUND:
1. Diagnosed w/aortic valve regurg in 1992..
latest echo , June 18,2014 revealed now severe

2. Hashimotos hypothyroid (diagnosed 1992)..on levothyroxin @.88 mg – in normal range

3 Coronary mild artery disease in 2001 via angiogram for R&L ventricle – was told in yesterday , June 26, 2014, consult over echo that higher probability of having bypass along with the aortic valve replacement open heart surgery CAUSE more than likely coronary disease has worsened since 2001

4. Lymph edema (arms only)1993

5 Celiac disease & Gastro esophageal reflux via endoscopy biopsy 2004 & endoscopy again in 2009 to check for cancer=negative

6. High cholesterol – recent 3 mths on Zetia…has brought some values down – not quite far enough to be in normal range yet…CANNOT TAKE STATINS..have had many statins & always muscle cramps/pain…until last year on Crestor – THE WORST ONE for leg cramps/pain happening every night/day – couldn’t walk. it off….had to crawl…horrible pain!

7. High blood pressure- back on Amlodipine @10mg ..to help before surgery

8. 3rd stage chronic kidney disease =have one kidney (donor in 1992 for sister)

9. Spinal Degenerative Disease - had laminectomy surgery in 2010…was told would some day need fusion – chronic back pain is daily & sometimes a 10 on pain scale ..but I’m used to the pain & just lay down & rest when it gets that bad

10. Knee osteoarthritis & hand osteoarthritis – 3 times cortisone shots I knees – don’t last long

11. Osteopenia = bone density = dignosed May 2011

12. COPD – have apptmnt for breathing test & 6 min walk next week to determine if COPD has worsened in the last 2 years & is more of the cause of worsened short of breath

13. Type 2 Diabetes

14. Peripheral Edema – face, arms, hands, abdomen, legs, ankles, feet have had
since my 20’s – on aldactone since 1992 –

15. TIA (mini stroke) specifically it is called a Amaurosis fugax TIA. On June 9, 2014 – went to ER after going to my entomologist surgeon for left eye cataract surgery on April 1, 2014 cause I thought the eye was causing the problem…Eye surgeon called ER cause he was pretty sure it was a TIA
They did carotid ultrasound = ok
And CT scan of head = ok

16. large purpura on hands & arms ….petechia on chest & a few on legs – going to hematologist next week..concerns with taking warfarin after aortic valve surgery AND why I am getting these purpura…not cause of age at all

Symptoms:
Fatigue much worse than ever before – so tired most of the time…any work (outside or house work during day) then can’t stay awake past more than 7pm…

Short of breath much worse – many mornings (not every morning) after getting out of bed… getting up really short of breath …short of breath does not wake me up

Legs really hurt when walking any distance & short of breath – can’t mow lawn without taking several breaks

Doing garden work – more heavy garden work – do a little then need to rest – over & over again

Get over heated really easy when doing house work or outside…sweating..then need to rest cause I feel really dizzy & start vomiting/or dry heaves over & over…If I don’t lay down & rest during these episodes I would faint

Night sweats are often…happening for about 2-3 mths….not normal for me

Don’t wake up feeling rested

For about the last 2 weeks have been nauseated upon waking with burning stomach…sometimes during day too (not as often as upon waking)

No chest pain…seldom have squeezing pains on left side


Ok...Now my questions:

1. Have you had multiple other disease such as I have?....how did/does that affect surgery?...recovery?....emotions/psychological disposition?



2. Latest echo revealed severe aortic valve regurg - One of my concerns is that I have Chronic Kidney Disease - Based on what my cardio told me & ALLLL that I have researched, I know that the kidney disease can become worse after surgery...If the kidney becomes worse/plummets and doesn’t recover to 3rd stage is a huge concern for me (I will be visiting & testing with my nephrologist)....
Have any of you had kidney disease prior to having this aortic valve surgery????....
Please, if you have kidney disease, tell me your thoughts, experiences, concerns, & medical/health consequences...

3. Will an angiogram will be done prior to surgery - my cardio in past apptmnts/meetings said he will 'spread' the time out between the two - all the dyes, etc from such testing such as an angiogram is very hard on the kidneys - in my case only one kidney...

4. Is a TEE test reliable?...is it better than an angiogram or isn’t the two different tests comparable…

5. I might have coronary artery blockage - a bypass would be done....Have you had a bypass in addition to aortic valve replacement?...How was the recovery?..I have read a vein is taken from some where in the body (leg,etc)

6. Is it true that ALWAYS a lung (s) are collapsed during this surgery?

7. I have Type 2 diabetes….Is it especially true I will have insulin?
because the body goes into a diabetic state during/after surgery?

8. I’m pretty sure I will need warfarin…but, I’m going to ask anyway…
Is it true that ALWAYS warfarin/coumaden is administered during/after surgery?...I will opt for a tissue valve (Because of my age = nearly 68 years old…AND having kidney disease & other autoimmune diseases would be dangerous for me to have a mechanical valve & the need for coumaden)

I probably have more questions, but for now….I’m just a little tired out…

Thank you for any response you can give me and have time for..

Debbie

 

[river-wear]

I can't help with very many of your questions, but I will do what I can and also encourage you to find a heart center that deals with so many comorbidities. You need a special place that has experience with your extra challenges.

4. A TEE is more reliable than a TTE, but doesn't show all of the things an angiogram can, such as the vessel structures of your heart. I think the TEE is most useful for getting a good look at your valve, but not a whole lot else. The angiogram, as far as I know, is the best way to assess any blockages.
5. Other folks on the forum have had CABG (bypass) while undergoing valve work; I'm sure someone else can chime in on that.
6. I don't know about "always" but it's a very common result of going on the heart-lung bypass machine. Air isn't being fed to your lungs and they tend to collapse. Maybe there is something they can do for your case to prevent this and improve the outcome.
7. When I had surgery just over two weeks ago, they said the epinephrine has a lot of dextrose in it and makes your blood sugar get all wonky. I had finger pricks for two days, but as far as I know I didn't require insulin because my numbers were coming down. I'm sure they would be able to control this appropriately for you.
8. I never had any warfarin/Coumadin. However, standard practice in the hospital was Heparin shots. If you go in and out of a-fib, then you will have to take warfarin, at least until your heart heals. Then you would probably be able to stop when your heart rhythm is back to normal. I had one episode of a-fib so they put me on anti-arrhythmia medication, but I was then stable in sinus rhythm and avoided warfarin.

Best of luck to you!

 

[Ryan CA]

Debbie, that is a lot to deal with at once. I can't imagine what you must be going through.

I can address just a couple questions:

As for your lungs being collapsed, that is a side effect of the negative pressure created when your chest is cracked. If your chest is cracked, your lungs will collapse. However, there have been great advancements in "non" or "less" invasive valve replacement surgery which has been designed specifically for people in your situation. There may be a possibility of having a valve replacement done through your brachial artery which does not require any opening of the chest. There is also less-invasive in which they go in through a small incision in the side of the chest.

The body doesn't necessarily go into a diabetic state after surgery. Your body does release a lot of chemicals and hormones due the trauma it goes through during surgery which can spike the patient's blood sugar. There has been several studies relating high blood sugar to delayed healing. Same reason many doctors wont operate on diabetic patients whom do not have their blood sugar under control. So part of the new national standard for post surgical care is control of blood sugar.

As for blood thinners....you will have some post operatively as a prophylactic measure against blood clots. Whether you are on coumadin in the future will likely depend on the valve you are given. You will most likely be recommended a tissue valve which is far less likely to require coumadin post surgically.

Good luck,
Ryan

 

[bramma11]

Thank you Michelle & Ryan...Yes, I do have a number of concerns...Even tho I have known there would come a day to face this...it still seems surreal when it is actually here...

AND, last summer I broke my foot & was house bound all summer....now this summer the surgery will be the thief...I asked if I could wait 2 months to get thru the summer ...the answer was no....I'm assuming my symptoms along with the severity of the valve regurg must be the reason...

Anyway, thank you again for helping me
the best to both of you
Debbie

 

[bramma11]

Also I wanted to add...I am with the Mayo Health System in Eau Claire, WI & completely satisfied with all who have helped me here (there have been numerous departments I have been to)...I have been to Rochester Mayo 2 years ago when my cardio in Eau Claire thought at that time I was ready for surgery & my cardio set up apptmnt with cardio in Rochester...I am hoping that the heart surgeons in Eau Claire will be able to handle the surgery with me...Both surgeons here go to Rochester to perform surgery there too...I don't want to be that far away from home here...

 

[Paleowoman]

Hi Debbie,

I have some of the problems that you have so I had some concerns which I took up with both the surgeon and the hospital for aftercare when I had aortic valve replacement last January (I had bicuspid aortic valve).

I have osteoporosis so I made it clear to everyone that my bones are fragile so that they would know to handle me with care when I was unconscious, especially when being lifted etc as osteoporotic fractures can occur then. I got a report from my rheumatologist which I gave copies of to the surgeon and hospital at the pre-admission session.

I have small airways disease so again I got a report from my respiratory consultant for the surgeon and hospital, especially also for the anaesthetist. Yes the lungs are always collapsed during open heart surgery. I was pretty fine afterwards though I did have pleural effusions on discharge. The respiratory consultant had said for the physiotherapist to do chest physio on me - they didn't which I was a bit annoyed about, but I was allright in the end. The analgesics given afterwards had an adverse effect on my lungs too so another reason the hospital needs to be fully aware of your COPD.

I too have diabetes Type 2, although mine is atypical in that I've never been overweight, am actually underweight, and I'm not insulin resistant. Everyone becomes a bit diabetic at cardiac surgery and everyone is put on insulin on a sliding scale. It was fine. Again, the hospital knew I had diabetes and also my endocrinologist came to see me every day I was in hospital as he is exceptionally caring

I had a CT angiogram before surgery to check for coronary artery blockages - less invasive than coronary angiogram and is supposed to be just as good.

PS - on admission for heart surgery I handed in all my medications for the above conditions and was given them at the appropriate times of day during my stay. My blood glucose levels were also tested after every meal, and my blood oxygen levels tested every day when they took my temperature and blood pressure.

 

[bramma11]

thank you Paleogirl....I appreciated hearing from one who has similar & same problems as I do...I copied your response & plan to use your info to tell/talk about....I have been very disturbed and scared ...the 'extra' problems I have facing me gives me great pause with needing this surgery - I will have it, but with high concerns...

I have been through major surgery back in 1992 when I gave my left kidney to my sister...the surgery was difficult & I was in ICU after post-op...docs were afraid of pulling all the tubes as I was so swollen...they had a tracheotomy team there ready - didn't need it in the end...But, because they cut me from mid navel to mid back- took out a rib (long scar), & my problem with anesthesia (didn't wake up till late the next day after surgery - I'll never forget thinking "Please God, don't let anyone ask me if I would do this again cause the answer would be no) I had a really tough time getting out of the hospital (pain & nausea - dry heaves over & over & over)...And, it took about a year & half for me to recuperate...lots of tests during that post op time (bone marrow & bone biopsies, CT scan, etc etc) to try to find out why I was having all of the symptoms & problems I was having....It was an awful time to go through...I loved my sister very much - she passed 3 years ago...had my kidney for 6 years without any problems..then it died....& she was in dialysis for the remainder of her life...

Anyway, I know what it is like to go through a tough time during recuperation....I was so ignorant back then with all the possibilities of having post op problems...I am no longer ignorant...But, that awareness doesn't make me any less frightened..If I didn't have all of these other problems I wouldn't feel as scared...

Thank you again for offering your support & information
take care
Debbie

 

[Paleowoman]

Hi Debbie,

Just make sure the surgeon, anaesthetist and hospital team/nursing staff are fully aware of your reactions to the previous surgery and all your current health problems. The aeasthetist is so important in this respect as he/she will be the one who is keeping you alive during the op and will supervise the immediate post op time in ICU. I'm sure they will appreciate it if they can get your previous hospital operation notes etc so that they can try and avoid the same problems. I found my anesthetist the best doctor in my cardiac team - which is why I list him before my surgeon in my signature ! My surgeon just did the cutting and sewing job ! The anesthetist made sure things went well for me during the op - I talked with him for quite a while the evening before the op. I now think people should see anaesthetists always well before surgery, at least surgery of this type, to discuss medications, pain killers, and any concerns we, as patients, might have with any aspect of the surgery and immediate time in ICU.

all the best,
Anne

 

[bramma11]

Again Anne...I appreciated your suggestions...I do have all of my daily reports while in the hospital from the beginning (day before with angiogram, etc to date of departure out of hospital)...and, all of the donor work-up notes & other reports...I made sure I got them all within that first year after surgery....I have shown them to my docs at Mayo in the beginning of my entering Mayo in 2009....I will make sure they have copies.....I agree with you that the anesthetist is a very important....

thank you again
Debbie

 

[Aggie85]

Debbie,
My heart goes out to you with all the issues you're coping with and I'm heartened by how well you seem to be handling ALL this. Scared yes, but you also seem upbeat and positive! :thumbup: I've not had all the recurring problems but many operable ones. 4 OHS for congenital heart defect and 8 others for various issues (hernia, hysterectomy, breast biopsies,...) so am familiar with the difficulties postop.

My first thoughts were, do you have good help available post op or are you on your own? Make sure to work closely with the hospital Social Worker to get you set up with good support upon discharge; home health nurse visits, occupational therapist,... That sort of thing.

With the Coronary issues on top of valve, I doubt they'd be able to do minimal but they may be able to handle them both semi separately and as minimal. That of course will be up to your surgeon.

Our prayers and good wishes will be with you!
Linda

 

[bramma11]

Linda...thank you so much for your very kind words...

Yes, I live alone....
I was told by my cardio 2 years ago when he thought I was ready for surgery then (cardio at Mayo in Rochester disagreed) that I would go to a special facility after care which isn't in Eau Claire, WI where I live..I can't remember & don't have notes as to what they are called...I will be discussing that with him on July 7.......I have 3 very close women friends who will be helping me..my kids all live in different states, & even tho they would take care of me, I would be too far away from my medical/clinic/hospital here.....My best wish is to come home upon release from the hospital...I don't know if that would be possible...but, I can wish ....

Again, thank you Linda
take care
Debbie

 

[river-wear]

Hi Debbie, maybe your friends could set up a rotation to take turns and stay with you for a couple of weeks after you get out of the hospital. After that, you may be fine with a daytime visit a few days a week to bring you groceries and raise your spirits. Or perhaps one of your children could stay at least the first week, with your friends helping after that. If you have someone to care for you at home, I'm sure the hospital would be amenable to the idea of going home. They just want to make sure you'll be all right and won't overdo it. You should be in excellent hands with Mayo.

Best wishes for a speedy recovery.