Vicki's Journal

Cathleen DeWitt  That's high but numbers can actually increase on some of the diuretics. It's a catch 22. BNP can get into the 1000's but 400 is the cutoff normally to start a CHF diagnosis. What did your doctor say?

Vicki Hake  I'm very frustrated😰 After 2 mitral valve repairs within the last 18 months, NOW why am I having CHF???? Boo.....

Patricia Garcia  Hi Vicki and I am sorry that you had to go through this a second time, let alone so soon. I have been through 3 mitral valve surgeries and my last was January 2015. I hope that you have contacted your doctor. Some breathless is normal after surgery, but to the degree of pain and discomfort you need to have it checked out. Your heart has been through so much that getting it checked out immediately will put you at ease. Best Wishes for a speedy recovery.

Phyllis Petersen  Patricia is right. If it is that severe, you should speak with your doctor. I had some pleural effusion after surgery, but it seemed to resolve. Others have not been so lucky. Normal breathlessness will probably improve with cardiac rehab. Good luck!

Peggy Whitecotton  I also was very short of breath, even talking made me short of breath. I couldn't raise arms to comb my hair.. I called my surgeon and he ordered a chest X-ray which show I had some pleural infusion and He increased Lasix. I too, was to start cardiac rehab and my doctor said it would help the breathlessness. It's not uncommon but you do need to call your doctor. I was told to weigh myself everyday if I had an increase of 2-3 pounds to call him or if my breathlessness got worse. The Lasix and exercise did wonders for me. Also he was very strict that I followed my low sodium and low fat diet as well

Jane Welp  I am at day 15 recovery from AVR and taking Lasix. I really didn't like it at first but my body is adjusting so it feels less out of control with frequency of urination. The doctor asked me to weigh daily and watch for an increase of 2-3 lbs just like Peggy said. I was told to follow low sodium and low fat too. As much as I love popcorn at the movies, I didn't want the side effects so I made other choices on Sunday and feel proud of myself.

Vicki Hake  Thank you all for responding. I saw the doc. He did an echo and it showed the same as when he did the surgery. He felt that it was just going to take longer to heal, this second time around. I still have a small amount of leakage. Just hope that's not what's causing the breathlessness.
I'm on lasix too but you know he never mentioned a low sodium diet. Strange.
I have felt better after exercising and my heart rate doesn't go above 90, but I'm still breathless. Will keep working at rehab❤ Thank you again❤

Steven A Husted  i think it does make a clicking sound you can hear if that does not bother you or taking coumadin the rest of your life a mechanical valve will work but a tissue valve will work just as well without the clicking sound or taking coumadin the rest of your life i chose a bovine tissue valve and glad i did what ever you are comfortable with

Clare Auten  I have an On-X valve in my aortic position. Yes, I can hear it but not all the time. It is most noticeable when everything is quiet like first thing in the morning or when I am laying in bed at night.

Nancy Roberts  So Vicki, what did you choose? I have the same "choice".... 65 years old...
One would think, Clare, that one gets used to the clicking ...? Thx :)

Phyllis Petersen  I hope your questions are getting answered. How is your prep for your next surgery going? Are you having the same surgeon do your new surgery? Although I was able to have my mitral valve repaired, I had to make a decision just in case. Since I have issues with internal bleeding from NSAIDs (I can take Celebrex, but not others). I would have chosen a pig valve, even though I'm only 62. My surgeon had no problem with this. This is such a difficult decision for you! You've already been on the wrong side of the statistics, so are probably even more leery than most. Thoughts and prayers personal peace, a confident decision, and especially for a successful surgery and easy recovery.

Catie B  Vicki, I see you had a Maze. Were you taking the Amiodarone for afib? My electrophysiologist said it is the best rhythm medication for afib. I don't know about for other purposes. If it makes you sick, I don't know how you'd continue taking it.

Clare Auten  I had amioderone temporarily for afib. It made me nauseous but not sick. I took pepcid with it to combat the nausea. Luckily, my afib was temporary and I don't have to take a rhythm med.

Vicki Hake  They tried me on the amiodorome to stop the afib and I couldn't take more than a week before I got so sick. I told the surgeon it made me sick so I needed to stop it, but he continued with it until the head nurse told him how sick it made me. I will sign something with this surgery that says I won't take it. Did all of you have it after your surgery?

Catie B  I'm still on it, but the dose has been lowered twice and in a few weeks, I'm supposed to try going off of it with prayers that the afib doesn't return. I had a lot of nausea in the hospital and would get very nauseated for weeks every time I felt too warm. May have been the amio. Dunno.

Phyllis Petersen  I've only had metoprolol on a continued basis. I don't remember that one in the hospital, just heparin (painful!), lasix, and the stomach one I can't remember now, as well as pain meds.

Craig Gay  In the hospital, they can draw blood thru your port. Once home. the inhome nurse can use a INR tester which is a finger poked like taking your sugar. Once regulated, you go longer between blood checks. If they have to draw your blood because they don't have an inhome test kit, If they use a butterfly needle to begin with, they have better luck and it's gentler on your veins for the long haul since it's a smaller needle. Hope this helps! Yvonne (Craig's wife)

  I have a home tester, I only test twice a month when my INR is stable (2.8 to 3.0). I've been on blood thinners due to a stroke and heart attach for 18 years and its not that difficult to maintain if you can stick to a steady diet. You will need your cardio to prescribe and make arrangements for a home tester and it may be covered by insurance, mine was.

Darlene Smith  Vicki, most of the ladies have reported no need for the shield since we have a built in shield. I didn't need one. My sports bra didn't touch the incision at all and I have small breasts.

Steven A Husted  this is one of the reasons i chose a cow valve i did not want to mess with blood thinners the rest of my life even with a redo ohs it would be my choice

Catie B  I get a finger stick when I get my INR tested. Whether eventually at home or in a doctor's office, you shouldn't need to have blood drawn from a vein.
I didn't use a shield, but my incision was very sensitive to touch, including from clothes. V-necks were helpful. I am small and went braless for several weeks.

Clare Auten  I am almost 3 years post op. On warfarin due to mechanical valve. Dosage had been stable 90% of the time. I get tested about every 4 weeks.

Catie B  I don't have any suggestions, Vicki, but I sure hope you feel better soon. Drinking lots of liquid and resting sounds like the way to go.

Darlene Smith  I have heard of it, and I understand it is mostly used for folks who might have difficulty surviving OHS.

Ben Hyman  I asked about it and was told it's obly for elderly or frail patients that could not tolerate OHS. It does not have a good track record for a long term reliability or for anything but the smallest leak.

Corey Sines  Yep, all TMVR options, including the Mitraclip,is reserved for high risk patients. http://my.clevelandclinic.org/services/heart/services/valve-treatment/mitral-valve-disease-percutaneous-interventions

Vicki Hake  Rats! I sooooooo not want to have this 2nd OHS after only a year ago having the first. The mitral valve repair did not work and now have to have it replaced. Has anyone had this issue?

Corey Sines  I am with you Vicki, Failed MV repair, 2nd OHS surgery coming up. Mine just took a little longer in between ( 7 years). Its hard to accept for sure. Praying for you..

Corey Sines  Odds are very good it will be lasting Phyllis, Vicki and I are in the minority. I think I remember hearing repairs at major heart centers typically have a 90 %+ 10 year repair rate (meaning no 2nd operation in like 9 out 10 people, sucks being the 10th person however, lol).

Phyllis Petersen  Hopefully, this time is the charm for you Corey. I'd hate going through this again, and I've had an easier time than many on here.

Roseline Rosario  Sorry to hear that but your on the right track asking here. Hope you get clarity and maybe go to a Big heart center for 2nd opinion. Prayer for clarity.

Phyllis Petersen  How awful and frightening for you! There are a few repeats on here. How soon does he want this done? Roseline is right about getting a second opinion if you can.

Vicki Hake  Thanks so much ladies. I hope one who has had a repair and then a replacement, checks in.
I'm shocked and feel so frustrated that the repair only lasted 1 year.
Doc says as soon as the diuretic stops working and it's more difficult for me to breathe, we will have to do it .

Susan Lyons  So sorry! I am having the same procedures this Friday. I do not know the meaning of the 5 and 10 measurements. Could you tell right away it was failing? Wish you well on the next surgery.

Vicki Hake  Susan, I began to breath heavier and was out of breath a lot. My bnp levels that shows levels of congestive heart failure. Continued to go up.
Are you having a repair or replacement? Is your open heart surgery?

Corey Sines  Vicki, So sorry for you! My MV Repair failed, but not nearly as quick as yours (7 years). I go in for a likely MV replacement next month. Sounds like your description is of Pannus overgrowth? (Scar tissue around the ring affecting the valve).

Susan Lyons  Surgeon is hoping it will be a repair and it will be open. He said if he decides that it needs to be a replacement he will use a mechanical so I won't have to have another surgery in my 80's ( I am 63). I did not know about the Maze Procedure until I met him a week ago. I believe he said that he wouldn't have opened if it was just going to be a valve repair but since he also has to do the Maze, he will open.

Wanda Mroz  Oh my gosh I'm so sorry. I had a repair a little over a year ago. Hoping that won't happen down the road. Wishing you all the best. I had a maze as well but still had atrial flutter a year out.