Well, here I am 4 hours away from having to be at the hospital, can’t believe that this day is finally here. People keep asking how I am feeling, I have to say that I still feel relaxed, now I am just afraid that I won’t wake up in time to get to the hospital, this is the way I felt before I had to fly, I never slept the night before a flight.
This will be my last post until I am out of bed and in a chair, which could happen by Friday. My “brother” Chris will post later tonight, after I am out of surgery to let you know that I am out and resting comfortably in ICU.
So here are a few things that I found out in pre-op…When I wake up in ICU, late Thursday evening, I will have a breathing tube and my hands will be restrained, so I won’t be able to talk or move my hands around. The reason for the restraints is that, instinctively, I will want to pull the tube out, there will be someone there with me to remind me of that. Surgery should really only go 7-8 hours, but they really don’t know about the amount of scar tissue he will have to get through. My mom will not be able to come into my room, but they will let her look at me for a minute through the window. They told me that I probably wouldn’t get rest during the day, they were going to have me up and walking on Friday, bring it on, I want to get back to normal.
I want to thank everyone who is praying for me, from my friends who let me know that I am in their prayers, to the people that are part of prayer requests and pray circles, you are truly beautiful people.
Well, I finally got my date for surgery, next Thursday, 2/2/12, 4 months after my diagnoses, 14 months after the onset of my symptoms.
I go in on Monday for all the pre-op, 4 hours of pre-op.
Right now I am excited, but I think I will start feeling all kinds of emotions in the next week, I have a feeling that anxiety will be right there at the top.
Thank you for all your prayers and thoughts, we finally got a date, but now the actual hard part, please keep them going.
Brief update…SURGEON CALLED, yes, on a Sunday!!! He will be scheduling my surgery in 2 & ½ weeks!! We couldn’t get the exact date today because his nurse wasn’t in today, of course.
I am going on a blood thinner for 10 days to see how my system works, I have to be off for 7, can’t be on blood thinner for surgery, that would be bad, then surgery…YEA!!!
My surgeon did tell me that he has been it close communication with my cardiologist and gastroenterologist and think this is the best way to go AND has talked about my case with the other heart surgeons at UCLA, they are in agreement too.
I wonder if my surgeon is reading my blog and read about tomorrow’s deadline??? LOL!!
So please keep those thoughts and prayers going, I love you all for all the support.
Well the scan came back, everything looks like it should…YEA!!!
So I called my surgeon on Tuesday, he was in Seattle, on an emergency, but his nurse was going to let him know and get a date for my surgery, she would talk to him Tuesday night or Wednesday morning….so I waited.
I called her Thursday afternoon, she let me know that she talked to him and he said he was going to look at his schedules at St. Jude and UCLA, and would get back to her on when he was open. She told me that she would now text him that I called again.
So, I have been thinking, if I don’t get a call from his nurse by 3pm, on Monday, I am going to call her, if she does not have a surgery date, the next call is going to be to my cardiologist and ask him to find another surgeon. I have waited far too long for this surgery. This is a very calm decision I have come to and will get my cardiologists feedback on it.
Well, I guess your prayers for that scan to finally get scheduled worked because it is scheduled for Monday.
So on Tuesday I called my cardiac surgeon and his office still had not made any headway with the referral, so I called my cardiologist and asked him to put it through stat, he did, I got a call Thursday afternoon and am scheduled for the scan on Monday morning!!!
So after I get the results from the scan and get rid of all this water, I will get a surgery date!!!
Please keep those prayers going, they are working.
First, let me thank you all for the thoughts and prayers, please keep them coming.
Second, I am sorry that I haven’t written in a while, I am pretty frustrated that the surgery HAS NOT been scheduled yet, they want to do another scan and they have not been able to fit me in yet.
They still want to find the source of the bleed before the schedule the surgery, I totally just want to get this done! Symptoms are getting worse, always tired, weak, headache, nausea, and now I am starting to get a little forgetful, nothing big, just words.
Keeping my spirits up with all the football on TV right now, thinking about getting Netflix and catching up on some movies that I wanted to see.
Hopefully I will know more next week, if not, I do believe that I will be having to make some doctor changes. I really don’t want to make any changes and start this process all over again…YUCK!!
Well got through the liquid diet yesterday, no nausea or throwing up…YEA!! Swallowed the camera capsule this morning, it was HUGE, a bit bigger that a large vitamin.
Hopefully the capsule went down like it was supposed to and they find something, fingers crossed. They should be reading th test in the next week and we should know what the next step sometime then.
I am anxious for the next step, want to get this thing going, my goal is for an amazing 2012.
First off, I really want to thank all my well-wishers and all those that are praying for me, I know I tell you in every update, but I really appreciate all of the thoughts and prayers.
Well, this is going to be a longer update because things have changed since the angiogram, things went well, but found a few more problems. Got to the hospital on Wednesday, 10/19, about 6:30am, procedure started at 8:30am. They gave me the twilight anesthesia, I was out of it for about a minute, but I remember watching my heart on the monitor, it was kinda cool, I have the greatest cardiologist, he was explaining things as he went, I totally didn’t understand. BTW, I didn’t tell him, in my buzzed state, that I loved him. After I was done I had to lay in bed for 6 WHOLE hours, with my right leg perfectly still, total torture. They found that I have some blockage, possibly might have to have a triple bypass, they will determine when they do the surgery. So as of right now we are looking at triple valve replacement and triple bypass, seems that the radiation and chemo did quite a number on my heart and veins, we should have known that veins were going to be scarred up too, most of the veins in my arms are, I have 2 good veins to get blood from.
My heart surgeon got delayed by a heart surgery that he was doing at UCLA, so we did not meet until the following day, Thursday, 11/20. He wanted to talk about the triple bypass, choice of the valve I wanted and trying to find where that bleed came from when I had the anemia.
Triple Bypass, check, understand it.
Choice of Heart Valves, things have changed, my surgeon enlightened me on a big fact, it seems that the tissue valves only really last in younger patients for about 4-7 years and the next surgery will be very difficult. So we are back to the mechanical valves and blood thinners, YUCK!! Things he said made a lot of sense to me, he explained that the mechanical valves could last a lifetime and there are some different possibilities out there on the horizons. It’s funny how all the research I did, nothing really ever talked about how different things are for younger patients and tissue valves.
Which leads to the test that I have tried once before, that made me so sick. I need to try it one more time, need to swallow the capsule with the camera in it so they can try and spot where the possible bleed came from in my small intestines. If we can find the source of the bleed, in the small intestines, we can remove it and maybe not bee from the blood thinners I will have to take with the mechanical valves.
So as of today I am waiting to get the date for the camera test, when that is done and results are in, we will figure out what we do next, if they find the source of the bleed, if we fix it before or after the heart surgery, when the heart surgery will be scheduled?? When all is said and done, no date for the heart surgery yet.
Please keep up the thoughts and prayers, they are working.
I know it’s been a while, but nothing has really has happened
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All is going well and I am having my angiogram on Wednesday, 10/19/11, finally!! They will be looking at my arteries and heart chamber, making sure there is no blockage. I am one step closer to my surgery, my cardiologist told me that I should be meeting my heart surgeon after the test.
The good thing about the angiogram is that they only give you twilight anesthesia, you are not all the way under and don’t have to be in the recovery room for 2 hours. BUT the bad thing is waking up during the procedure…YIKES!! The last two times that I had the twilight anesthesia I talked, or tried to talk during the procedure. I see the potential for really embarrassing myself, i.e., telling my cardiologist how much I love him, I can see myself doing that.
OK, the next update I hope to be able to let you know how this test went and, hopefully, some news of when my surgery will happen, fingers-crossed.
Thank you for all your thoughts and prayers, I am so encouraged by them.
First, I want to thank you all for the all the thoughts and prayers, I know they are working, because a few cool things happened, I will tell you after the update.
Had my appointment, on Friday, 9/16/2011, with the gastroenterologist, Dr. Matthews, very cool doctor, he actually remembered me from when I was in the hospital in May. He asked be a bunch of questions, determined that I should have a GI Tract Capsule Endoscopy, finally got my referral and appointment is set for Monday, 9/26/2011. Basically what I do for this test is swallow a very small capsule with a tiny camera, records pictures of my digestive tract and see if he can possibly find the source of my internal bleed, which I don't have anymore, but we'll see what he can see. Do any of you remember that movies, I'm going to date myself, called "Inner Space" with Dennis Quaid and Meg Ryan??? All I am picturing is Dennis Quaid riding down my digestive track, I may have to rent it.
Now to the cool things...If you have read all of my journal you may know that my big fear is the pain associated with the breaking of my sternum, I was sent some information about a new procedure they are using, instead of wires they are using plates and screws, Sternal Plating, like they do in other breaks to stabilize the bone. When you want to heal a bone they use plates and screws to keep it stabilize, they are now doing this with the sternum. If you picture your chest, it is always moving, breathing coughing, and the worst, sneezing, well the plates and screws stabilize it more. Now the trick is to find a heart surgeon that id using them instead of wire, I left a message with my cardiologist to look for one that does, fingers crossed.
The next thing I have been trying to come to grips with is why, what purpose do you have for me to be going through this?? I hope that I have found out why or at least part of why. I sat down, with my mom, at the end of the Nightly News with Diane Sawyer, total fluke, I really don't like to watch the liberal media, but she was talking about the death of Ted Kennedy's daughter, she died from a heart attack, a heart attack caused by her cancer treatments. WHAT!?!?! This is what the doctor says caused my valves to leak, my leaky valves will not cause a heart attack, but this is a recognized problem, they even have a new practice called Cardioncology. Now I want to do something with my scarred up valves, volunteer for someone to learn something from them, I am actively looking to see if I am a candidate to let people do tests on me, read and see all my tests and results, I don't know, but something.
So please add a little bit more to your prayers that I find a doctor or hospital, that I am a candidate to volunteer. If I can do something for someone or help a doctor learn more about this, it would bring me such joy.
Spoke with my doctors nurse on Wednesday, 9/14/11, and we tentatively set up an angiogram on 10/5/11. I was so happy to get the ball rolling, but that was short lived. My cardiologist wants me to see the gastroenterologist that did my endoscopy when I was in the hospital at the end of May, diagnosed with anemia. Seems they never found the source of my internal bleeding.
The cardiologist wants to see if he can find it now because of the 2 different valves they can use, one is a mechanical valve, which is human made, and the other is a tissue valve, which is from a pig or a cow. The thing about the mechanical valve is that I have to take a blood thinner the rest of my life, so there is the chance that I will have to get blood the rest of my life, but I can't function when I'm anemic. With the tissue valve I would not have to take the blood thinner.
So here is my big choice...mechanical or tissue??? Mechanical could last the rest of my life, but what is my quality of life like if I am anemic and spending all that time in the hospital getting blood??? Tissue valves only last 10-15 years, then I will have to replace them again, but no blood thinner and maybe getting back to work. Yes, I will have to go this again, but in 15 years I am still young and think of the advances in medicine, hell, they might be able to put in human valves, who knows?
I think you can tell by the paragraph above, I am going with the tissue valves, I think 15 good years and another surgery is SO much better than taking that poison blood thinner.
My primary care doctor, Dr. Middleton(LOVE HIM!!), pushed through the referral for the gastroenterologist, called today at noon, and they had a cancellation for tomorrow, 9/16/11, and I'm in! I am really hoping that I can get back on track with my angiogram, so I can knock this surgery out.
Thank you all for your words of encouragement and keeping me and my mom in your thoughts and prayers.
I have a huge favor...when you sign my guestbook make sure and sign you name. Unfortunately, they don't leave me your name or email address so the only way I will know who sent it is if you sign your name at the bottom.
Monday, 9/12/11, went to the hospital, checked in at 11:00am, test scheduled for 1:00pm, got my IV, nasty stuff to gargle and some happy stuff that knocked me out.
I started to come out of it at the end of the test, heard him talking about all the scar tissue. I was pretty out of it and he asked me about my past, I told him about my radiation therapy some 20 or more years ago, it was like a light went off and he knew that was what it caused them to degenerate. So we know what and how, it kind of made it ok or at least made me feel better.
On Tuesday, 9/13/11m my cardiologist called and confirmed that my Mitral, Aortic and Tricuspid valves were leaking and I need to have them replaced, open-heart surgery. He is also needs to do an angiogram to make sure that there isn't any issues with my arteries.
Next step is that we schedule the angiogram and meet with the heart surgeon.
So, here's the funny thing, my doctor thinks I am a bit crazy but loves my positive attitude, I am not afraid of the surgery, just the splitting of my chest bone...YIKES!! I can only imagine the pain when I cough or sneeze. This is what I am nervous about, not them stopping my heart and putting me on a bypass machine during surgery, but them cracking my chest bone apart. I think I need to stop watching hospital shows.
Another thing that gives me so much hope, is that I keep reading and hearing that I will come out on the other side of this surgery feeling so much better, all my symptoms will be knocked out or knocked down a few pegs. I just want to walk with my friends and not have to stop to catch my breath and wait for the dizziness to go away.
I can't tell you how happy I am to know what is wrong and to see a light at the end of this tunnel.
It's Tuesday night, 9/13/11, I am going to write the dates of the last weekm when things happened, because it all happened so fast, crazy fast.
On Sunday, 9/4/11, I wasn't feeling right, so I decided to take my blood pressure, I knew something was off, and it was pretty high. I told my mother that I was going to take a shower and see if that calmed me down, it didn't bring it down, and I knew I had to go to the hospital. I had my mom drop me off, I didn't want her to stay because she can't drive at night, plus I have no problem doing this hospital thing on my own.
They admitted me and planned a few tests for Monday morning, a stress test, which was ok and a echocardiogram, they did not get read before I left the hospital. They discharged me with a prescription and an order to call my cardiologist because they had seen some fluid around that heart.
I woke up in my own bed, on my own, not some screaming nurse or someone to take blood, trust me, you don't get any rest in the hospital. I called my doctor, talked to his nurse James, told James I was in the hospital over the weekend and to have Dr. Byun check out the tests, that they saw fluid on my heart. That first message was left to Dr. Byun on Tuesday, 9/4/11.
Didn't hear from him Wednesday, finally talked to him on Thursday. 9/6/11, wasn't the call I expected.
Dr. Byun told me that the fluid was nothing to worry about, but we had another problem, I had leaky valves. What are leaky valves? Can I take some medicine to make them no leak? Short answer, no, and not just any surgery, open-heart surgery. He told me that I had to have a Transesophageal Echocardiography (TEE), an ultrasound of the heart where an instrument is inserted through the mouth and passed into the esophagus. Because the heart and esophagus are close together, they can see the valves up close.
After driving home, sitting in the driveway for a few minutes, trying to digest what was just told to me, I went in the house, grabbed some water and turned off the TV and told my mom. Since it's just me and my mom, this conversation could have been ugly, but my mom was strong, like I was trying to be. One thing I know about me is the more I talk about it, the easier it gets. I called my best friend and asked her to call me, then shot her a text to call me ASAP. We talked, just choked up a little. Then I called Chris, "my brother", on Friday and told him the story, he is very happy that I might be getting a swine valve, imagine the jokes that will be made. The best part of our conversation was when he asked to send out a prayer request, bless him and bless all the people that responded to his request, I truly believe in the power of prayer. I know this happening for a reason and I will be shown what it is, I just have to keep my faith and stay on the path, he has a plan.
I got a call on Friday, 9/9/11, and they pushed my paperwork through and had me scheduled for Monday, 9/12/11 at 1:00pm.
Next, get through the weekend, don't think about it, get the TEE and get my final diagnoses
I am from: Orange County, California
This will be my last post until I am out of bed and in a chair, which could happen by Friday. My “brother” Chris will post later tonight, after I am out of surgery to let you know that I am out and resting comfortably in ICU.
So here are a few things that I found out in pre-op…When I wake up in ICU, late Thursday evening, I will have a breathing tube and my hands will be restrained, so I won’t be able to talk or move my hands around. The reason for the restraints is that, instinctively, I will want to pull the tube out, there will be someone there with me to remind me of that. Surgery should really only go 7-8 hours, but they really don’t know about the amount of scar tissue he will have to get through. My mom will not be able to come into my room, but they will let her look at me for a minute through the window. They told me that I probably wouldn’t get rest during the day, they were going to have me up and walking on Friday, bring it on, I want to get back to normal.
I want to thank everyone who is praying for me, from my friends who let me know that I am in their prayers, to the people that are part of prayer requests and pray circles, you are truly beautiful people.
Now to sign off with my usual…
Talk to you soon,
Kelly