Mary VanSlyke - Heart Valve Journal

My Journal

1303 days ago

1 person reacted to this

I have had a very difficult week and here is a great place to just get it out. Family and friends are great, but they haven't been through it. I have been ...Read more

I have had a very difficult week and here is a great place to just get it out. Family and friends are great, but they haven't been through it. I have been so fatigued. Friday and Saturday night I was in the ER with hydrophrenosis. That is an enlargement of the kidney due the inability to pass urine. I have blockages in both kidneys and it is the most agonizing pain I have ever been through. I am still in pain, although not as severe. Monday I saw urolgy, Tuesday I saw nepherology. I have been diagnosed with a rare congenital kidney disease where my ureters are stenotic. My kidney function keeps dropping. I need stents put into both kidneys. The nepherologist believes my kidney function will restore once I have surgery. For now, pain meds, fluid restrictions, diet restrictions, medication restrictions. Of course everything is sent to my cardiac surgeon who is waiting for my kidney function to go up do he can move forth and it went down. Initially they canceled my tests, then after reviewing further called me and told me they don't my heart is strong enough for kidney surgery. I went and had MRIs without contrast today on my heart valves. This will give him more information. So now I wait. My hope is that my heart surgery can be done ASAP if that's the case, my kidneys are making me very ill. I need that ASAP to limit damage to my kidneys. I guess I am scared. I am 51 and just really hoping someone helps me and will move forth with one or the other surgeries.

Sara Latina Mary I am so sorry for all you are having to deal with. This is definitely the place to get it all o ... Read more

Sara Latina Mary I am so sorry for all you are having to deal with. This is definitely the place to get it all out. It is hard for others that have never experienced anything like this to be able to understand how you feel. While the pain is obviously hard to handle the fatigue for me was the worst. It’s hard to motivate when just getting up out of a chair takes your breath away. I’m praying that you will be able to have surgery soon to start the road to recovery. Stay strong!!! You can do this. Remember you are not alone!

Martin Smith Wishing you strength and the best outcomes from a heart valve recipient north of the border.

Susan Lynn Mary - i am so sorry to hear you're in such pain. It's good news that they can restore your kidney ... Read more

Susan Lynn Mary - i am so sorry to hear you're in such pain. It's good news that they can restore your kidney function. It's going to be very important to be your own advocate. If you're not satisfied with the speed (or lack of it) in addressing your condition, then you need to move your complaint to someone else in the medical hierarchy. You don't have to be nasty, but you have to be assertive. Maybe your primary care doc can get the wheels in motion - ask him/her. The scheduling for your surgery needs to become a priority. Don't be shy about insisting on the treatment you deserve. Sending prayers and positive thoughts your way! We're here to help you through this. Please keep us posted. ❤

Mary, I agree with Susan Lynn, but I’m so sorry for all that you are going through. Keeping you in ... Read more

Mary, I agree with Susan Lynn, but I’m so sorry for all that you are going through. Keeping you in prayer for the best outcome. God bless you

Richard Munson Sounds like what comes first, the chicken or the egg. If they cannot perform heart surgery without go ... Read more

Richard Munson Sounds like what comes first, the chicken or the egg. If they cannot perform heart surgery without good kidney function, maybe that is number one. Good luck mary.

Mike Tirrell Mary - I am sorry to hear this. FWIW, I had a relative that had a similar kidney situation. He had ... Read more

Mike Tirrell Mary - I am sorry to hear this. FWIW, I had a relative that had a similar kidney situation. He had "drains" put in. I use quotes because that is the word they used for it but I assume they were stents as you've described here. It went off without a hitch and decades of normal kidney function followed. Hang in there, one thing at a time. Kidneys first, then heart, then the rest of your life. You are young, you will recover quickly once you are able to get the treatment you need.

Louise Moore Mary, I'm sending my support to you. Kidney pain is unbearable and I'm glad there's a solution and r ... Read more

Louise Moore Mary, I'm sending my support to you. Kidney pain is unbearable and I'm glad there's a solution and relief in sight and the correction will give you normal function back as Mike relayed above. You will get through this, the body is an amazing machine and this blip will be history in the coming months. The MRI's on the heart valves will provide clarity and decisions can be made to correct one and then the other, you're almost there, it will work out and this will all be in the past, soon. Keep us posted, you have our support.

Mary VanSlykeposted an update

1311 days ago

I had COVID in December and it has caused kidney failure. I see a nepherologist next week about dialysis. Next week I am scheduled for MRIs of my heart valves ...Read more

I had COVID in December and it has caused kidney failure. I see a nepherologist next week about dialysis. Next week I am scheduled for MRIs of my heart valves and vascular system of my chest and then to see the surgeon for a consult. It's unlikely they will be able to do the MRIs now due to the kidney failure. They say I can still get my valve replaced but the surgeons need to figure put another way to get the images they need. Has anyone else been through heart surgery with kidney failure? I can't believe how quickly my health has declined.

Mike Tirrell Hi Mary, I am sorry to hear of your challenges with getting your valves fixed. This is certainly com ... Read more

Mike Tirrell Hi Mary, I am sorry to hear of your challenges with getting your valves fixed. This is certainly complicated enough without adding kidney concerns. I am not sure what images they needed via the MRI(s) but perhaps they could do a trans esophageal echo instead? prior to my surgery, they gave me a cardiac CT. I asked if I would also need a TEE because I had read of many people needing them. They said that they were able to get what they needed from the CT and that the TEE would not be needed. I am not sure if that will be the case for you but perhaps the TEE could get them what they need (?) Good luck and best wishes for a successful surgery and recovery.

Susan Lynn Mary - I am so sorry to read your news. I agree with Mike on the TEE. I'm guessing they want to avo ... Read more

Susan Lynn Mary - I am so sorry to read your news. I agree with Mike on the TEE. I'm guessing they want to avoid contrast dye since that can affect kidneys.
Stay positive - your kidneys may still recover. Ask your nephrologist if you could benefit from a renal artery angioplasty - that procedure opens up the blood flow to the kidneys if you have any blockages. My father and grandmother both had issues with blocked renal arteries, so I am sadly familiar with failing kidney function. Medicine has come a long way. Don't lose your faith that a solution will be identified for you. You have a lot of life ahead to live! Please keep us posted on your progress. Best of luck to you!

Mary VanSlyke Thank you so much both if you for these ideas. It was explained to me that, the MRIs are needed bec ... Read more

Mary VanSlyke Thank you so much both if you for these ideas. It was explained to me that, the MRIs are needed because of my congenital disease and they need to rule any other abnormalities in the chest prior to surgery. I have had a TEE before and that may be a great idea to get a better look at the valves when it was questionable on the TTE if surgery is needed. Yes, it was mentioned that indeed there is a chance of there being blood clots in my kidneys Susan, so that Is great information, since I am new to this, a month earlier my kidney function was normal. I thought I came through COVID fairly unscathed, but you never know. I will get through this. I cannot have contrast dye. I appreciate the feedback. This all is overwhelming.

Susan Lynn Mary - I'm curious - how do you know that your kidneys were affected by the Covid virus? I know of t ... Read more

Susan Lynn Mary - I'm curious - how do you know that your kidneys were affected by the Covid virus? I know of three people whose kidney function was affected by the vaccine, not the disease. I have yet to see any reports from the CDC reporting possible adverse renal impact. With my family history, I worry about anything that could damage my kidneys, but I do know that some function can be restored depending upon the cause. I'll be saying a prayer for you for good news from your nephrologist. ❤🙏🏼

Richard Munson Anything that comes from the cdc is probably suspect anyway.

Mary VanSlyke Susan, my doctor told me that early on in COVID there were many people whose kidneys were affected by ... Read more

Mary VanSlyke Susan, my doctor told me that early on in COVID there were many people whose kidneys were affected by COVID. He told me it can cause blood clots in the kidneys as well. I think the biggest reason he suspected COVID as being the cause is because a month ago I had normal kidney function and a day after I was diagnosed with covid it was at 25%. My doctor said that is such a huge drop, so quickly and something he has seen before with COVID. I have been in the ER twice this weekend with a unknown cause blockage in my ureter and my kidney is enlarged. I see a urologist for a procedure tomorrow and a nepherologist on Tuesday. So , hope I get more answers.

Richard Munson Mary, you have been thru a lot. I hope your puppy is keeping your spirits up.

Mary VanSlyke Richard, my puppy is so incredibly feisty. Oh to have that energy.

Mary VanSlykeposted an update

1353 days ago

1 person reacted to this

At age 51....being referred for TAVR. I am kind of feeling unsure. I think an open surgery could potentially give me a longer life expectancy.

Adam Pick Hey Mary, Here are some educational links that might help you learn more about the pros and cons of S ... Read more

Adam Pick Hey Mary, Here are some educational links that might help you learn more about the pros and cons of SAVR and TAVR.

Adam Pick https://www.youtube.com/watch?v=mPG2AMZ-pks

SAVR vs. TAVR Patient Webinar: What Should Patients Know?

https://www.youtube.com/watch?v=mPG2AMZ-pks

https://www.Heart-Valve-Surgery.com - During this patient webinar, you will learn important facts and the latest research for treating aortic valve disease u...

Adam Pick https://www.heart-valve-surgery.com/heart-surgery-blog/2021/04/23/dr-roselli-patient-success-story/

Ari & Dr. Roselli Form Special Heart Valve Surgery Bond!

https://www.heart-valve-surgery.com/heart-surgery-blog/2021/04/23/dr-roselli-patient-success-story/

I am beyond happy to share that Ari Mintzer, 46, just had a successful aortic valve re-operation at the Cleveland Clinic on Tuesday. So you know, Ari needed a “re-do” because his 14-year old tissue valve was failing from aortic stenosis and regurgitation.

Adam Pick https://www.youtube.com/watch?v=0qK4vWAvwLI

TAVR vs SAVR: Jim Whitney's Bicuspid Aortic Valve Patient Success Story (with Dr. Chris Malaisrie)

https://www.youtube.com/watch?v=0qK4vWAvwLI

https://www.Heart-Valve-Surgery.com - With the recent FDA approval of Low-Risk transcatheter aortic valve replacement (TAVR), patients are asking important q...

Mary VanSlyke Oh my goodness. Thank you so much Adam. It's been a difficult day, but you just made it better.