We are never late, Gina and I. It is something I learned that either working in restaurants or in Aspen, showing up on time is half the job. I think Gina just has it in her genes. We showed up at the Dr. appointment exactly on time which is a little too close for me, it was okay this time for Gina, but we were on time so I shouldn't sweat it. This was the follow up appointment, post ablation procedure, with the great Dr. L at the UCH Heart Center. She was going to do, I guess, a routine checkup.
I had my list of questions to ask, mostly about my medications and such. I also had some paper work I needed Dr. signatures on so I could go back to work. That is really what I wanted to accomplish with this visit. If I got my return to work paper work signed I figured that all else was good.
I got about 3 hours of sleep the night before so I was felling less than 100%; damn that prednisone. My blood pressure was low but otherwise I felt okay. I would get the questions answered and the papers signed and all would be good. And it was. And I got the once over from the great Dr. L. Not to shabby. She is very thorough. She told us some interesting facts about sarcoid and vitamin D and calcium, that I will not bore you with. She also eluded to the fact that she is friends with my other sarcoid doctor at Nation Jewish. She is very impressive. So I leave with my paper work and a smile and we are off to the rest of the day: thanksgiving feast at Anna's school and then home for a nap. It was nice to go to school and see Anna in her learning environment.
It was also good to run into people that we knew there too. The part two of this whole crazy mother loving saga: the getting on with life, the running into people, the doing things with family, the standing in the playground talking about our kids. The part where people says "its good to see you" and ask you "how your doing". The part where I say its great to see you and the part where I have have an answer about how I am doing.
And the answer I am doing fine. Really, I feel well. I am still recovering from wasting away in the hospital for so long. That's been hard. Not having a lot of energy and not a lot of stamina. My muscles really atrophied while I was hooked up to the monitor and IV in the hospital and didn't feel like doing laps around the 10th floor. I remember that night before Halloween when I was taking the dog for a walk and wondered if it was the exercise that got the sarcoid angry. So I was weary about doing anything to strenuous. Not that laps around the 10th floor are all that difficult but that's how I felt. But I feel fine now, just wish I could sleep more (damn that prednisone) .
The part two is also getting past the fact that the ICD is gonna fire. It might, it might not. It shouldn't, at least not for quite some time, not until the sarcoid gets angry again, and that shouldn't be anytime soon. I know kind of what the signs are now if it is going to fire: shortness of breath, palpitations, feeling crappy. The ICD is programmed to provide alternate therapy (its ATP but I cannot remember what it stands for) before the ICD fires and the ATP will try for a period of time before it is decided it is not effective and then the ICD fires.
The part two is also getting past the fact that I feel like I should be on a tether. Like I shouldn't ever be too far from help. That's going to be hard. But that's what I have to do.
Sometimes, I don't know about you, but when crazy crap happens to you you look at life differently. Or life is different for you. You see things differently. Like the other night after they discharged me from the hospital, after the ablation, we were home watching Kung Fu Panda. And the panda/Dragon Warrior learns that there is no secret ingredient to the secret ingredient noodle soup. For some reason that spoke to me. The secret ingredient is nothing (dramatic pause, 5 seconds at least). The getting past this, getting into part two, following Dr. S instructions of "go live life", the secret to making all this happen is...nothing.
Okay, well here I go, boldly, head first into part two, with no secret to making it all happen. Just got to do it. I need to forget that the ICD will fire, I need to get off the tether. Part Two here I come.
Friday, November 28, 2008
Monday, November 24, 2008
What All Went Down With the Ablation
So I tried to keep myself positive by writing the "Could I Be In a Better Place?" blog but the real fact of the matter is I was still scared. Its all fine and dandy when you're just laying around the hospital waiting and the TV is on and Gina is with me and the nurses are nice and are not poking and prodding but asking if I need anything. But when the nurses from the EP lab show up to take you down for the procedure all that confidence gets thrown out the window. This is real, wheel me down for the ablation, for the heart surgery, where they burn the bad spots in my heart. Yeah all that confidence gets thrown out the window.
So, the nurses show up to take me down, but we are still waiting for some of my medication to show up. So we sit, and wait and talk about whats is going to happen, but from the nurses perspective. Dr. K shows up, the meds show up and now I can get wheeled down to the 3rd floor. We wait at the elevator for 10 minutes, I'm the patient, they're talking about the weekend, skiing, etc. Me I am wondering if I am going to make it through this okay.
Into the lab, hop up on a table, and get more EKG stickers, big stickers for the manual defibrillator because they are going to turn my ICD's defibrillator of for the procedure. I talk to the anesthesiology. He says that they are going to sedate me to the point where I will be able to communicate with them during the procedure, as in answer questions as to how I am feeling, etc. but that I wont remember much. So I am all wired up, they have the equipment all centered over my heart, there are 6 really nice computer monitors hang over my body, among other pieces of what I imagine is really expensive equipment. I am nervous. I keep thinking that there is a location on the outside of my heart where the VT is coming from and they are going to have to cut me open to get to it. And that's risky, real risky.
But then they start the sedation and I vaguely remember the nurses marking where to find the pulse on my feet with a pen, and then not much else. I do remember Dr. S talking about going to see Coldplay that evening and I offered my opinion on Coldplay and U2 (for and against). I remember feeling a couple of ticks in my heart and that's all. For 8-9 hours that's all I remember.
They wake me up and Dr. K is standing over me reprogramming my ICD (turning on the defibrillator, I asked) and resetting my base heart rate or how fast I am paced (75 bpm). I am still a little loopy as she talks about the lead that goes to the outside of my heart, the part that makes my heart beat more synchronously, might have moved and thus I might have my diaphragm contract, kind of lick having hiccups. Really, that what your are worried about. Okay, that's good. I'll watch out for that. Its happened to me in the past and believe me it is not much of a trade off having to put up with that (which happen very infrequently) and how much better that bi-ventricular ICD made me feel (night and day). No open wound in my chest. So they didn't find any VT coming from the outside of my heart. What a relief. I have a Dr. and a nurse applying pressure to the 2 incisions on my groin. Right side was just venous or into a vein and the left side (I believe) was venous and artery. Pressure for 10 minutes and then they wheel me up to my room on the 10th floor, the cardiac intensive care unit. Room 1007, the same room I was in on that fatefully evening the day before Halloween.
Gina was there, as was Annie, and Juan and Bob, and so were Rob and Shawna. So many people that stopped by that day too (May Jo and Debbie, Jeff , who else, I don't remember...), and thanks for being there. It meant a lot to us. The nurses said I looked good for being on that hard slab down on in the EP lab of all those hours and I will take their word for it but I didn't feel all that great. My back was killing me. I couldn't get off my back or move around for awhile I was told.
Dr. K came up and talked about the procedure. (I am going to put a disclaimer in here as this is what I remember being said, actual details may be different and if I found out that I misrepresented something I will rectify it.) She said the 3 EP docs did total of about 80 burns. The area where it all took place was in the lower right side or right ventricle of my heart. That's the part that pumps the blood to the pulmonary artery to get oxygenated. More specifically the area of incident was the wall that is shared my the left ventricle. Most of what was burned was already heavy scared by the sarcoid and wasn't really healthy muscle or contributing significantly to my heart function anyway. But at the end of the procedure the docs could not induce any VT and were also able to ablate some areas where I was getting Premature Ventricular Contractions or PVCs. They didn't have to go into the left side at all which means the there is no possibility of a stroke form the procedure. Dr. K looks tired as does everyone and she bids adieu and We thank her as much as we can (I hope Beaver Creek was all you hoped it to be).
Rob and Shawna and brother Bob and Gina's Dad all come back into the room to say hello. Gina's Dad flew in that day from blizzardy Jamestown New York. Rob got me a fishing rod and we are going to use it this summer for sure (thanks Rob and I hope I wasn't to insulting when I heard that you were going to the midnight showing of Twilight, I am still going to get you an apron). I'm staving at this point. I haven't eaten in 24 hours and the large dose of prednisone makes me want to eat like a ravenous hound dog. I cannot sit up but manage to get Gina to feed me some chocolate, salami, some chicken from her dinner of pad thai and some salt free nuts. I order food from the kitchen: 2 tuna sandwiches on white toast.
While we are waiting for the food to show the nurses are checking my wounds, and the visitors sans Gina and Bob depart. Somehow someone makes a joke and I start laughing and the right side wound opens up again. Back to pressure for 10 minutes and then I have a big bottle of saline on top on the wound applying pressure. Bob makes a comment about how he is glad to hear that the scaring from the sarcoid was localized to that one area because he thought that when they got in there they would find my heart like a "moldy old roll." I'm glad they didn't. My food shows up. What! There is only 1 tuna on white toast! I inhale it anyway and moan about how hungry I still am.
I wish that this was the only drama but at this point the monitor that I am hooked up to starts to beep that beep that I remember from the day before Halloween. Its the VT beep. What, VT, can't be, I just had an ablation and they said it was all gone. But the monitor is going crazy and the nurses are in and we are all just kind of bewildered. And it keeps happening. They are drawing blood for labs, calling for an EKG, asking me if I feel it and I think I feel my heart rate increase but I doesn't feel like VT. Gina, Bob and I are just in shock. We get a portable EKG cart into the room hook it up to me and as the monitor is going crazy the EKG reads normal. Relief, something is just up with the in-room monitor and I don't know what they do to fix it (move the leads, new EKG stickers,?) but it all returns to normal. Relief. I tell Gina and Bob now is a good time to leave. And they do. And I get some shut eye.
The next day, one of the EP docs, Dr. S, who did some of the ablation, drops by, not once or twice but 3 times to talk to me. He declares success and says go live life! You got it! We, Gina, who showed up just as the doc did, and I are very happy. He also said the Coldplay show was great. He said the lead that causes the hiccuping didn't move so it shouldn't be a problem. Lastly he said that he talked to the heart failure team and they are going to release me today. We weren't sure because an echocardigram was ordered which might indicate that I was to stay over night. Okay, time to change and get the hell out of there. The great Dr. L, the cardiologist who is running things that day, shows up and talks to me and sends me home.
I'm out the door at 2:00 pm. As they wheel me down the hall all the nurses say good by. A lot remember me because they said they have a lot of people come in with VT, but not many with as much as I had on that night before Halloween and no one ever is talking or awake like I was. We say goodbye and sorry, but we are never coming back.
We are home by 3:00. and it never felt so good to be home.
So, the nurses show up to take me down, but we are still waiting for some of my medication to show up. So we sit, and wait and talk about whats is going to happen, but from the nurses perspective. Dr. K shows up, the meds show up and now I can get wheeled down to the 3rd floor. We wait at the elevator for 10 minutes, I'm the patient, they're talking about the weekend, skiing, etc. Me I am wondering if I am going to make it through this okay.
Into the lab, hop up on a table, and get more EKG stickers, big stickers for the manual defibrillator because they are going to turn my ICD's defibrillator of for the procedure. I talk to the anesthesiology. He says that they are going to sedate me to the point where I will be able to communicate with them during the procedure, as in answer questions as to how I am feeling, etc. but that I wont remember much. So I am all wired up, they have the equipment all centered over my heart, there are 6 really nice computer monitors hang over my body, among other pieces of what I imagine is really expensive equipment. I am nervous. I keep thinking that there is a location on the outside of my heart where the VT is coming from and they are going to have to cut me open to get to it. And that's risky, real risky.
But then they start the sedation and I vaguely remember the nurses marking where to find the pulse on my feet with a pen, and then not much else. I do remember Dr. S talking about going to see Coldplay that evening and I offered my opinion on Coldplay and U2 (for and against). I remember feeling a couple of ticks in my heart and that's all. For 8-9 hours that's all I remember.
They wake me up and Dr. K is standing over me reprogramming my ICD (turning on the defibrillator, I asked) and resetting my base heart rate or how fast I am paced (75 bpm). I am still a little loopy as she talks about the lead that goes to the outside of my heart, the part that makes my heart beat more synchronously, might have moved and thus I might have my diaphragm contract, kind of lick having hiccups. Really, that what your are worried about. Okay, that's good. I'll watch out for that. Its happened to me in the past and believe me it is not much of a trade off having to put up with that (which happen very infrequently) and how much better that bi-ventricular ICD made me feel (night and day). No open wound in my chest. So they didn't find any VT coming from the outside of my heart. What a relief. I have a Dr. and a nurse applying pressure to the 2 incisions on my groin. Right side was just venous or into a vein and the left side (I believe) was venous and artery. Pressure for 10 minutes and then they wheel me up to my room on the 10th floor, the cardiac intensive care unit. Room 1007, the same room I was in on that fatefully evening the day before Halloween.
Gina was there, as was Annie, and Juan and Bob, and so were Rob and Shawna. So many people that stopped by that day too (May Jo and Debbie, Jeff , who else, I don't remember...), and thanks for being there. It meant a lot to us. The nurses said I looked good for being on that hard slab down on in the EP lab of all those hours and I will take their word for it but I didn't feel all that great. My back was killing me. I couldn't get off my back or move around for awhile I was told.
Dr. K came up and talked about the procedure. (I am going to put a disclaimer in here as this is what I remember being said, actual details may be different and if I found out that I misrepresented something I will rectify it.) She said the 3 EP docs did total of about 80 burns. The area where it all took place was in the lower right side or right ventricle of my heart. That's the part that pumps the blood to the pulmonary artery to get oxygenated. More specifically the area of incident was the wall that is shared my the left ventricle. Most of what was burned was already heavy scared by the sarcoid and wasn't really healthy muscle or contributing significantly to my heart function anyway. But at the end of the procedure the docs could not induce any VT and were also able to ablate some areas where I was getting Premature Ventricular Contractions or PVCs. They didn't have to go into the left side at all which means the there is no possibility of a stroke form the procedure. Dr. K looks tired as does everyone and she bids adieu and We thank her as much as we can (I hope Beaver Creek was all you hoped it to be).
Rob and Shawna and brother Bob and Gina's Dad all come back into the room to say hello. Gina's Dad flew in that day from blizzardy Jamestown New York. Rob got me a fishing rod and we are going to use it this summer for sure (thanks Rob and I hope I wasn't to insulting when I heard that you were going to the midnight showing of Twilight, I am still going to get you an apron). I'm staving at this point. I haven't eaten in 24 hours and the large dose of prednisone makes me want to eat like a ravenous hound dog. I cannot sit up but manage to get Gina to feed me some chocolate, salami, some chicken from her dinner of pad thai and some salt free nuts. I order food from the kitchen: 2 tuna sandwiches on white toast.
While we are waiting for the food to show the nurses are checking my wounds, and the visitors sans Gina and Bob depart. Somehow someone makes a joke and I start laughing and the right side wound opens up again. Back to pressure for 10 minutes and then I have a big bottle of saline on top on the wound applying pressure. Bob makes a comment about how he is glad to hear that the scaring from the sarcoid was localized to that one area because he thought that when they got in there they would find my heart like a "moldy old roll." I'm glad they didn't. My food shows up. What! There is only 1 tuna on white toast! I inhale it anyway and moan about how hungry I still am.
I wish that this was the only drama but at this point the monitor that I am hooked up to starts to beep that beep that I remember from the day before Halloween. Its the VT beep. What, VT, can't be, I just had an ablation and they said it was all gone. But the monitor is going crazy and the nurses are in and we are all just kind of bewildered. And it keeps happening. They are drawing blood for labs, calling for an EKG, asking me if I feel it and I think I feel my heart rate increase but I doesn't feel like VT. Gina, Bob and I are just in shock. We get a portable EKG cart into the room hook it up to me and as the monitor is going crazy the EKG reads normal. Relief, something is just up with the in-room monitor and I don't know what they do to fix it (move the leads, new EKG stickers,?) but it all returns to normal. Relief. I tell Gina and Bob now is a good time to leave. And they do. And I get some shut eye.
The next day, one of the EP docs, Dr. S, who did some of the ablation, drops by, not once or twice but 3 times to talk to me. He declares success and says go live life! You got it! We, Gina, who showed up just as the doc did, and I are very happy. He also said the Coldplay show was great. He said the lead that causes the hiccuping didn't move so it shouldn't be a problem. Lastly he said that he talked to the heart failure team and they are going to release me today. We weren't sure because an echocardigram was ordered which might indicate that I was to stay over night. Okay, time to change and get the hell out of there. The great Dr. L, the cardiologist who is running things that day, shows up and talks to me and sends me home.
I'm out the door at 2:00 pm. As they wheel me down the hall all the nurses say good by. A lot remember me because they said they have a lot of people come in with VT, but not many with as much as I had on that night before Halloween and no one ever is talking or awake like I was. We say goodbye and sorry, but we are never coming back.
We are home by 3:00. and it never felt so good to be home.
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