Today is Saturday & finally feel as if out of the woods...long stay in ICU was due to 2 drugs that they used to help heart beat on it's own. Long, slow process of slowly lowering dose so my heart would not be stressed with a job it couldn't do on it's own.stressed.My heart was in more trouble than I ever realized.
OHSU is a world unto itself. My team was huge and consisted of very skilled cardiologists.
I'm glad I didn't need a bypass & so happy they could do a maze. That, plus the Left atrial appendage removal, will all help my heart function improve.The other side of that equation is that the heart got a huge hit & shook up pretty good!!
I am shocked at how weak I am & how vulnerable that feels.The walks everyone speaks of are for me mini- marathons of moving slowly, laboriously through space as I gasp my way past one or two rooms on my left.
They are planning on my attending cardiac rehab in a few weeks.... maybe they have a tricycle for me. LOL!
Thanks for all the comments& love & prayer expressed. I'm Finally able to sit up & read them for myself & smile as I treasure each of you in my heart.... my new heart!
hello there. i'm kerry, one of sunny's daughters. mom wanted me to update you on how things went today. : )
the surgery took about 4.5 hours and was very successful. dr. slater did the maze and was able to repair the mitral valve, so we were thrilled to not have a valve replacement! he decided NOT to repair the leaky tricuspid valve because the leads from her pacemaker were right there & it could have caused more trouble than it was worth to mess with it. he also decided NOT to do the bypass after all. she held up very well throughout the surgery & was very, very sleepy afterwards for about 4 hours. we finally got the breathing tube out & got her all cleaned up around 8pm tonight. by then it was time for more pain killers and then she drifted off to sleep again. my sister tracy arrived from california around 9:15pm & mom was able to wake up enough to say hi and how was your trip & then she fell back asleep. her heart rate & blood pressure are very stable and the entire team at OHSU has just been fabulous. thank you for your love & support - i know mom appreciates it so very much!
Surgery is now scheduled for this Wednesday the 21st. Mu hubbie's brother, Mike is here to keep Doug, company while I am in hospital & to help out w/ chores. My oldest daughter ,Tracy , from Ca. will join her little sis, Kerry, in keeping me company in hospital & will send updates .... so we are all set to go.
So glad to finally get some help for my beleaguered heart .... I dread the recovery, but then again, it is football season & now I get to sit & watch college ball AND NFL as much as I want!! Sweet!!
Got my power recliner & I feel like a queen sitting in it! My husband said, "Well, you ARE a Queen!" One friend said she will get a tiara for me while I am in the hospital so they will recognize my royal status!! LOL!! So... 2 more days and it's on!!
Thanks to those who wrote to encourage me, especially about the rent a center rentals and the person who wrote aobut " we can only think one thought at a time..." that helped tremendously and am actually getting to sleep faster & going back to sleep if I wake during the night. So mystery friend, thank you!! and big hug!! And to Ruth for your good thougths & ideas. This is a great site!!
I thought I was doing pretty good as I am waiting for 9/22 and the surgery; I am starting to lay awake each night.... thinking.... going over the surgery....recovery.... that infernal breathing tube in there.... being tied down.... I have trauma related issues related to being tied down as a 7 year old for tonsillitis surgery that I didn't know I was having, etc. etc. During the day I do just fine, but night time comes & it's quiet & my thoughts come out of nowhere..... so I am wanting this to be over with!!
11 more days.....trying to find a power recliner & may get one on Craig's list. Hope it really is something I need..... from what I've read, it's a life-saver!! there... I've said it out loud!! Feel better now!!!
My daughter & I went to see Dr. Slater at Oregon Health & Science University (OHSU) in Portland..
He said the in combination with everything else , the MVt needs repair,
plus a possible shortened version of the maze for the A-fib... I asked him if he knew what he was doing & if I were the 3rd valve job he had done..... he laughed & said he had been doing this for 10 years & had trained with the partner of the doctor (Cox) who invented the maze.... hmmm... that sounded good!
He wants to do a by pass on the one artery that is blocked while they were in there..... this is the artery in front of the heart that delivers oxygen so it is critical for me to have that clear. He also will do a Left Atrial Appendage Ligation ( put a scrunchy on the left atrial appendage... this is where most clots form & will remove the necessity of taking coumadin) I asked about repairing the tricuspid & he said that was a maybe... the problem with all these possible procedures is time.... and my being too long on the heart/lung machine..... I asked him what was my greatest risk in all this....
He paused & said the risk is that when they stop my heart, it will not start back up... so.... he needs to prioritize these procedures & keep an eye on the clock.... It's like baking a cake & frosting it & adding sprinkles & a cherry on top.... they may have to be content with just baking the cake. If my heart doesn't re=start they can put in a VAD.... (ventricular Assistance Device....) GASP!!
The major problem seems to be the weakened heart muscle which can't pump as it used to due to heart failure which I have had for 7 years & now am diagnosed with Cardiomyopathy. The tachycardia & A-Fib hasn't helped the heart failure at all!! I am sad & mad that so many years with A-Fib has weakened my heart further & the doctors seem to have forgotten all about the heart failure piece of the puzzle. The other risk factor is my implanted CRT & the wire placement in the heart when he does the maze & the valve repairs.
I asked the scheduler if there was an earlier date & she said they "made" a time for me... next available is end of October. she also put me on the wait list for cancellation.... I am the only one on that list.....
We then went to lab for blood & urine samples & then chest xray. EKG lab was closed by this time 7 pm. so they will do that the morning of the surgery which is Sept 22. I have a spirometer to practice deep breathing to help with the breathing exercises after surgery.
So I have 3 weeks now till the big day. At least finally someone realizes now that I am in trouble & will do something to help.
Dr. L recommends valve repair & is facilitating an appt with Dr. Slater at OHSU (teaching hospital in Portland, Or.) He says not too many surgeons will take on an at risk patient like me, but Dr slater is an expert with at risk patients. Evidently he is concerned that my heart function will decrease with the valve repair/replacement. So now I wait for the appt to see this specialist in valve surgery. I was hoping to have a robotic procedure.... there is a surgeon on staff who teaches robotic techniques. Going to figure out a way to see him too. Not sure if insurance would go for the robotic surgery or even how to check out my options........ so still in wait mode.....
Had the stress treadmill today. Hubby & I had to walk all over the hospital to get there. The aide helping us find the building finally got me a wheelchair as I just couldn't keep walking. I was in tears... partly because of the frustration of the Salem hospital layout & the fact that i had a false sense of security walking around here at home, but I just could not handle the long duration of walking. I also felt fear for the first time, that this may be worse than I realized.
Dr.. Leichman was present & he & the tech were commenting on the echo while I was at rest.... comments not so good. He was also frustrated that i was told to stop coreg as my rate was 142 resting... BP was 145/90..... ( normally the rate is 60- 80 and BP is 12/69 ) so I started the test almost at the rate that were going to get me to. Could not last at all on the incline so they lowered the incline & just increased the speed. I lasted about 4 1/2 minutes.
They were commenting about the high pressure in the atrium or ventricle due to the leaking Mitral & tricuspid Dr. L said that pressure is why I am out of breath. I was in A-fib & also tachycardia during this time as the ventricles were trying to keep up with the atria....
Dr. L is very concerned and will bring my case to clinic this week & recommend a repair. he needs to find a specialist in high risk surgery & has a favorite in Portland. I asked him about the maze & he said he's not all that impressed with the maze but the doctor could probably do it.... probably? eeek!!!
He said I am an at risk patient because of my lowered heart function which will worsen with repair or replacement. sigh.... I don't want to be an "at risk patient".... sounds too scary.
so now they have proof that I have a problematic valve. He said they don't repair the tricuspid. I had a gal write me thru Heartvalvejournal& she is having both of her valves repaired. Her doc at Cleveland clinic said when the mitral valve leak gets worse it harms the tricuspid as it gets overloaded & then it starts to leak. Wow..... who's right?
It was scary to see the heart monitor & BP & actually see what happens when I exert myself..... the monitor doesn't lie...We got it up to 185 but it did come down. They put in an IV as a precautionary measure in case they needed ot give me coreg or ???? intravenously.
I will see him Dr.L next tuesday morning & will take my daughter with me to help ask questions. So still more questions.....
Things are moving slowly.... i have the stress echo next Wed. tehn see the EP again. After stopping the Tikosyn, I am feeling better and the A-fib is intermittent. Yesterday I was able to walk all over the yard, even up our steep long driveway, haul hoses, weed. Amazing.I am half afraid they will say to wait till the MV leak has worsened. My youngest daughter said it is like I am walking a tight rope.... on one side is open heart surgery & on the other side is they do nothing & I remain SOB & fatigued.... neither one is desirable. Guess I was premature to start this journal.....
Since learning Tuesday that I will need a MV repair and possibly a Maze procedure for the a-fib that has plagued me, I spent the day trying to find Cardiac surgeons in the Salem and/or Portland area. My husband had a stroke in Nov. of 09 and so I want to be as close to home as I can be. It is hard to wait until I hear from the EP what the next step is.... after the stress treadmill test.... will I see the surgeon?
How will I know if he knows what he's doing? How does a consumer ( me) go shopping for a doctor to cut open my chest & repair a valve in my heart?
I want to be very sure before I give my heart to anyone!! Sounds like a song title!!
I am hoping against hope that someone will read this & answer me!!!