It is almost 5:00 am and I have been up for 2 and a half hours. Spent about an hour of that laying in bed wondering what to do. I didn't want to get up. I want to roll over and fall back asleep and sleep until 10:00 am. Alas, no such luck. I guess that's the price I have to pay for not having any episodes since the ablation: sleep deprivation. Its really just a side effect of the medications that try and suppress the angry sarcoid. Thats my biggest complaint. The lack of sleep. I need my sleep. Just 7-8 hours a night is OK by me. Currently I get about 5 and thats just not enough.
So...no episodes, such as ATP (Anti Tachycardia Pacing) or VT and my defibrillator has not fired as well. All good news. At least I haven't had any since I last went to the good doctors at CU a couple of weeks ago, mid December. I don't think I have had any since then either.
I returned to work at the beginning of December and that was good. Getting back into a routine and kind of feeling normal again. The worst part about all of it is the side effects from the 2 medicines that are suppressing the angry sarcoid: prednisone and cellcept. The side effects for both are Insomnia and then there's the whole insatiable apatite and redistribution of fat to the face and belly and back just from the prednisone. So needless to say it hasn't been easy losing any weight over the holidays.
So for right now I have been just following doctors orders: take the medicines and come back and see us. Now I just have to come to the realization that the ablation has bought me some time. It is no long term solution. The sarcoid is still there and there is no cure. The best that can be done is to suppress the immune system with the aforementioned medications and hope that the sarcoid doesn't get angry again (HA! whats the likelihood of that?). I just hope that when it does get angry that we see some roadsigns for when it is just starting to get a little upset and not have to wait for the ICD to to let me know.
Until then I am just following doctors orders: take the medications, be healthy and live life.
Tuesday, December 30, 2008
Friday, November 28, 2008
Part Two
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.
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.
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.
Friday, November 21, 2008
Out of Surgery
Well I am out of surgery.
I wrote this before I went in and Gina published it for me.
This is Gina. It is 7:30 p.m. I has been one very long day. They took Paul to surgery at 8:30 this morning. Everything went very well and Paul is in his room and doing well. We will post more tomorrow as we are all very tired right now. All our love to all.....
I wrote this before I went in and Gina published it for me.
This is Gina. It is 7:30 p.m. I has been one very long day. They took Paul to surgery at 8:30 this morning. Everything went very well and Paul is in his room and doing well. We will post more tomorrow as we are all very tired right now. All our love to all.....
Thursday, November 20, 2008
Could I be In a Better Place?
Could I possibly be in a better place then The University of Colorado Hospital (UCH)? Sure I could, only if I wasn't sick, only if it wasn't for the damn angry sarcoid. But if you have Cardiac Sarcoidosis and and they are going to do a VT ablation, there is no better place, Period. I am sure of that.
The EP doctor, Dr. K, just dropped by to talk to me and my lovely wife Gina, (aside: how apropos was last weeks reading in the Catholic Church) about what to expect and answer my myriad of questions. She explained that she cleared her schedule and will be there for the whole procedure as well as the 2 other EP docs. She mentions that UCH is partnered with the manufacture of the CT scan and they are going to try to do some new imaging, overlaying the images from the CT scan along with the electrical mapping of the heart (I guess its called a electrophysiological study or EPS). So a representative from the maker of the scanner will be there (cannot remember if it is Siemens of Philips or some other company) to assist with that. That should really help in finding just where these problem areas are.
As for the ablation, what they do is put a catheter into the artery on my groin area and go up into a vein into the top or atrium of my heart and then into the ventricals and that's where they seek out where the VT is propagating from and ablate that area. That's my version, the actual technical version my be slightly different, but that's what I heard her say...
They've done this a bunch of times but not to many hearts with sarcoid. Dr. K mentioned a new study that came out from Michigan about VT ablations but I haven't found it yet and maybe will look for it post ablation. One of the questions I asked was how efficient my heart will be in after the procedure. The answer was that there is a lot a scaring from the sarcoid and additional scaring from the ablation may reduce my hearts productivity (in the heart failure world we talk ejection fraction or EF) but it is a question best answered by a "we'll see." I am OK with that. You know why, I cannot go through life having days of 80 VT episodes, the ICD fireing 6 times, 911 call, etc.. There is nothing worse then knowing every waking moment, in the back of your mind, that that ICD could fire. Then I think about the thing going off while I am sleeping too. I don't envision that thats a nice way to wake up. Yeah, I can't go through life like that.
We also talked about when I might be able to go home and the happy path would be Saturday. If its not Saturday, it probably means that they found and ablated on area on the outside of my heart. Which means that that cut a whole in me just below the sternum. But they have done their research and have the cardiac thorasic surgeon ready to go to perform the that actual cutting. If they do that then the recovery time might be a little longer.
We were told that there is nothing that they won't do to make this successful. And they have already done a lot of leg work working up to 8:00 am Friday morning, November 21, 2008.
So hey, this is all good and I am going to come out of this much better than when I came in. And... so... NO, I could not be in a better place right now then UCH. Absolutely COULD NOT BE. So I am going to relax, watch some football, get a late snack (since I cannot have any food past midnight, NPO you know), unplug the phone and get a good night sleep.
The EP doctor, Dr. K, just dropped by to talk to me and my lovely wife Gina, (aside: how apropos was last weeks reading in the Catholic Church) about what to expect and answer my myriad of questions. She explained that she cleared her schedule and will be there for the whole procedure as well as the 2 other EP docs. She mentions that UCH is partnered with the manufacture of the CT scan and they are going to try to do some new imaging, overlaying the images from the CT scan along with the electrical mapping of the heart (I guess its called a electrophysiological study or EPS). So a representative from the maker of the scanner will be there (cannot remember if it is Siemens of Philips or some other company) to assist with that. That should really help in finding just where these problem areas are.
As for the ablation, what they do is put a catheter into the artery on my groin area and go up into a vein into the top or atrium of my heart and then into the ventricals and that's where they seek out where the VT is propagating from and ablate that area. That's my version, the actual technical version my be slightly different, but that's what I heard her say...
They've done this a bunch of times but not to many hearts with sarcoid. Dr. K mentioned a new study that came out from Michigan about VT ablations but I haven't found it yet and maybe will look for it post ablation. One of the questions I asked was how efficient my heart will be in after the procedure. The answer was that there is a lot a scaring from the sarcoid and additional scaring from the ablation may reduce my hearts productivity (in the heart failure world we talk ejection fraction or EF) but it is a question best answered by a "we'll see." I am OK with that. You know why, I cannot go through life having days of 80 VT episodes, the ICD fireing 6 times, 911 call, etc.. There is nothing worse then knowing every waking moment, in the back of your mind, that that ICD could fire. Then I think about the thing going off while I am sleeping too. I don't envision that thats a nice way to wake up. Yeah, I can't go through life like that.
We also talked about when I might be able to go home and the happy path would be Saturday. If its not Saturday, it probably means that they found and ablated on area on the outside of my heart. Which means that that cut a whole in me just below the sternum. But they have done their research and have the cardiac thorasic surgeon ready to go to perform the that actual cutting. If they do that then the recovery time might be a little longer.
We were told that there is nothing that they won't do to make this successful. And they have already done a lot of leg work working up to 8:00 am Friday morning, November 21, 2008.
So hey, this is all good and I am going to come out of this much better than when I came in. And... so... NO, I could not be in a better place right now then UCH. Absolutely COULD NOT BE. So I am going to relax, watch some football, get a late snack (since I cannot have any food past midnight, NPO you know), unplug the phone and get a good night sleep.
Back to the Hospital
Yes I am back and Boy Howdy! has it been uneventful.
I got poked 3 times and have 2 lines in me, one is the garden hose size. I have had the coronary CT and that went well even though there was some scheduling issues between cardiology and the CT lab. I have had a nice cardiac breakfast and lunch, a short nap and a visit from the cardiac doc. Still waiting for the EP docs to show up and listen to their speech. Then its my turn to do the talking and I have some questions I am going to ask and get answers to.
Gina is just chilling out on the couch, waiting as well. That's what we are doing waiting. I guess we are waiting for 7:30 tomorrow morning. That's when it starts, all goes down.
I got poked 3 times and have 2 lines in me, one is the garden hose size. I have had the coronary CT and that went well even though there was some scheduling issues between cardiology and the CT lab. I have had a nice cardiac breakfast and lunch, a short nap and a visit from the cardiac doc. Still waiting for the EP docs to show up and listen to their speech. Then its my turn to do the talking and I have some questions I am going to ask and get answers to.
Gina is just chilling out on the couch, waiting as well. That's what we are doing waiting. I guess we are waiting for 7:30 tomorrow morning. That's when it starts, all goes down.
Wednesday, November 19, 2008
I really only know 2 jokes
I really only know 2 jokes.
I heard them a couple of years ago while I was skiing Aspen. I was either skiing with Bayless or Sugg, and we stopped in at the sundeck, back when it was the sundeck and not some exclusive club, to hang out on the deck. It was a nice day, cold and sunny, and I am sure we felt good about the skiing we had been doing. We ran into Frogman because when don't you run into Frogman. Froggy had a buddy with him, this guy, if memory servers me correct, was called Bumby. He was living at the sundeck working as the baker. Bumby and I shared a mutual friend. This guy named Chip Johnson. I asked Bumby if he could point out where it was on the back side of Aspen Mountain, that Chip was skiing when he caused an avalanche and died. He pointed to some spot, I think he called it hurricane gulch or something and said it happened over there. We talked about Chip for awhile and then Bumby started to tell some jokes.
So you can blame Bumby for my 2 jokes. The first joke is about a bus load of politicians and and a New England farmer and the second joke is about 2 New England farmers talking at the fence their properties share. It goes like this: there are these 2 New England farmers talking to each other at the fence their properties share. They're talking about the price of fuel, the weather, whatever, and then one of the farmers says he had to put his dog down. The other framers says "was he mad?" (you know mad like foaming at the mouth, roaming the streets looking to eat a baby out of a stroller mad). The first farmer answers by saying "well, he wasn't too happy about it." Get it, he wasn't to happy about being put down. It makes me laugh, but it is also about how I feel about having to go back into the hospital; I'm not to happy about it.
Its my forth time since the beginning of October that I have had to be in the hospital and all the holes that they poked into my body have healed nicely. I not looking forward to wearing the hospital garb, getting more holes poked into me, sleeping in a bed that doesn't fit, eating more cardiac diet meals, getting checked on every 4 hours, getting no sleep and the list goes on and on. But what I am most not happy about the uncertainty of the whole ablation procedure. It scares the living daylights out of me. If you stop and consider what they are gonna do, stick a catheter up your vein and/or artery and put your heart into a life threatening rhythm and them burn parts of you heart that cause the life threatening rhythm, it is rather hard to digest.
Oh well, that's just how I feel, not to happy about it but I guess there is a huge upside that I should really be concentrating on and that is getting rid of the VT, dramatically decreasing the likelihood that the ICD will fire, and me getting back to having a normal life again. Now that I wrote this all down I will try and make that my goal for the day.
So when you see me after all of this has transpired, you can ask me to tell you the joke about the farmer and the bus load of politicians and I will gladly tell it to you. I won't guarantee that's funny but I will gladly tell it to you.
I heard them a couple of years ago while I was skiing Aspen. I was either skiing with Bayless or Sugg, and we stopped in at the sundeck, back when it was the sundeck and not some exclusive club, to hang out on the deck. It was a nice day, cold and sunny, and I am sure we felt good about the skiing we had been doing. We ran into Frogman because when don't you run into Frogman. Froggy had a buddy with him, this guy, if memory servers me correct, was called Bumby. He was living at the sundeck working as the baker. Bumby and I shared a mutual friend. This guy named Chip Johnson. I asked Bumby if he could point out where it was on the back side of Aspen Mountain, that Chip was skiing when he caused an avalanche and died. He pointed to some spot, I think he called it hurricane gulch or something and said it happened over there. We talked about Chip for awhile and then Bumby started to tell some jokes.
So you can blame Bumby for my 2 jokes. The first joke is about a bus load of politicians and and a New England farmer and the second joke is about 2 New England farmers talking at the fence their properties share. It goes like this: there are these 2 New England farmers talking to each other at the fence their properties share. They're talking about the price of fuel, the weather, whatever, and then one of the farmers says he had to put his dog down. The other framers says "was he mad?" (you know mad like foaming at the mouth, roaming the streets looking to eat a baby out of a stroller mad). The first farmer answers by saying "well, he wasn't too happy about it." Get it, he wasn't to happy about being put down. It makes me laugh, but it is also about how I feel about having to go back into the hospital; I'm not to happy about it.
Its my forth time since the beginning of October that I have had to be in the hospital and all the holes that they poked into my body have healed nicely. I not looking forward to wearing the hospital garb, getting more holes poked into me, sleeping in a bed that doesn't fit, eating more cardiac diet meals, getting checked on every 4 hours, getting no sleep and the list goes on and on. But what I am most not happy about the uncertainty of the whole ablation procedure. It scares the living daylights out of me. If you stop and consider what they are gonna do, stick a catheter up your vein and/or artery and put your heart into a life threatening rhythm and them burn parts of you heart that cause the life threatening rhythm, it is rather hard to digest.
Oh well, that's just how I feel, not to happy about it but I guess there is a huge upside that I should really be concentrating on and that is getting rid of the VT, dramatically decreasing the likelihood that the ICD will fire, and me getting back to having a normal life again. Now that I wrote this all down I will try and make that my goal for the day.
So when you see me after all of this has transpired, you can ask me to tell you the joke about the farmer and the bus load of politicians and I will gladly tell it to you. I won't guarantee that's funny but I will gladly tell it to you.
Tuesday, November 18, 2008
48 hours and counting
So in about 48 hours I return to the hospital for the 4 and hopefully final time for awhile. I check in on Thursday the 2oth and have my ablation on the Friday the 21st. Today I also start 5 shots of blood thinner heparin. I am going get Gina to give it to as I think she might enjoy it (as it should be painful for me).
When I check in at the hospital I head to the 12 floor and then just wait I guess. I know that they are planning a coronary CT scan at about noon. That's where they take x-ray images of slice of my heart. I think that's good information for them to know before the surgery. Then I guess they are gonna also poke me and make sure my blood is clotting they way they want it to. and poke a hole in me to give me intravenous drugs if the need arises. And then I think I will get a visit from the docs to go over what is really gonna happen to me. and then we wait. and I say we because you know Gina is gonna be there...
So Friday is the procedure. I still haven't read up on to know exactly what it entails. I will do that between now and tomorrow night. Part of me doesn't want to know. I do know that they use catheters to go vein or artery (I can't remember) in my upper leg to my heart. That's to ablate the areas inside my heart that are causing the VT. If there are areas on the outside of my heart, and I have a feeling there are, they will poke a hole below my strunum and go between my chest and pericardium, the area or sac around the heart. Thats the tricky or more risky part of the whole porcedure as there are lots of really important arteries that feed the heart blood that you don't want to mess with. Anyway, Dr. Bieke may not even let the EP docs do it since I am faily suppeptable to infection right now and he may not be willing to take that risk. I am still having a hard time coming to grips with what this whole procedure.
So I will change the subject. Gina just gave me the shot and it wasn't too bad now it is stinging. Time to start passing the time until I head to the hospital.
When I check in at the hospital I head to the 12 floor and then just wait I guess. I know that they are planning a coronary CT scan at about noon. That's where they take x-ray images of slice of my heart. I think that's good information for them to know before the surgery. Then I guess they are gonna also poke me and make sure my blood is clotting they way they want it to. and poke a hole in me to give me intravenous drugs if the need arises. And then I think I will get a visit from the docs to go over what is really gonna happen to me. and then we wait. and I say we because you know Gina is gonna be there...
So Friday is the procedure. I still haven't read up on to know exactly what it entails. I will do that between now and tomorrow night. Part of me doesn't want to know. I do know that they use catheters to go vein or artery (I can't remember) in my upper leg to my heart. That's to ablate the areas inside my heart that are causing the VT. If there are areas on the outside of my heart, and I have a feeling there are, they will poke a hole below my strunum and go between my chest and pericardium, the area or sac around the heart. Thats the tricky or more risky part of the whole porcedure as there are lots of really important arteries that feed the heart blood that you don't want to mess with. Anyway, Dr. Bieke may not even let the EP docs do it since I am faily suppeptable to infection right now and he may not be willing to take that risk. I am still having a hard time coming to grips with what this whole procedure.
So I will change the subject. Gina just gave me the shot and it wasn't too bad now it is stinging. Time to start passing the time until I head to the hospital.
Friday, November 14, 2008
From Plan A to Plan B
So way back when I was in the hospital (the 3rd time, not the 1st or 2nd), it took forever for the medical team to come up with a plan on how to treat me. My sarcoid was very very angry and my heart was inflamed. I was loaded up on steroids to reduce the inflammation. Once that was all under control and the VT was happening on a less frequent basis, it could be determined what to do with me. Since there are not a lot of cases like mine out there, there is not a prescribed course of action. After much debate, and I can imagine that that is an understatement, it was decided, collectively by said medical team, that the course of action, heretofore known as Plan A, would be to give me a medication that had antiarrhythmic properties. That is to say, give him a pill to stop the VT from happening.
Plan A worked. They gave me the drug and followed me for a couple of days in the hospital to make sure it suppressed the VT and didn't present any harmful side effects. It all seemed good and that's when they booted me from the hospital after eleven long days.
So, Gina and I our on our way to the Heart Failure Clinic for a check up to see how I have been doing since I left the hospital. Its about 9:10 when we park the car and start walking to the Anschutz Inpatient Medical Pavilion. I get a little winded and dizzy during that short walk. I chalk it up to my meds kicking in (I just took all my medications an hour or so before). The new drug they gave me, the antiarrhythmic, is also a beta-blocker which can lower the blood pressure so that what I think is going on, my BP is just low. I saw that it was low in the hospital and just assumed it was low still and that's whats making me a little dizzy. It surely did not feel like I was having any VT.
So we check in and shortly get called to go to the device clinic where they interrogate the implantable cardioverter-defibrillator (ICD). They put some EKG stickers on you and hook you up to the portable computer, then put a plastic doughnut looking thing over the ICD and start the download of info from the ICD to the computer. At this point the Tech leaves the room to go get some adhesive remover because she see all the EKG glue still all over my chest and wanted me to have some stuff to get it off later. That was very nice because I have a lot of that crap still on me and it doesn't come off easy. While she is gone the computer starts spewing out paper of whats been going on in my device since it was last interrogated. The last date of interrogation was that fateful day the eve of Halloween 2008. So needless to say there is a lot of stuff being printed. Gina and I are both pretty knowledgeable about how to read these print outs. I kinda want to wait and have the tech or doc tell us whats up but we look anyway.
And what do you think we see? We see that I had about 4 episodes of VT walking into the mother loving hospital that morning! Can you believe that? There were a couple other VT episodes a couple days earlier too. Holy Cow! Plan A is not working...
Next we meet with the good Dr B and he doesn't look too happy to tell me Plan A is not working. But we still have Plan B. We are going to continue Plan A but now we are also gonna do Plan B.
Plan B is Ablation. Ablation is a regular old word that you can use in you day to day life when you want to say that you are going to remove material from on object by means of chipping, vaporization or some other erosive processes. However, in my particular case it means that a week from today I will have 3 EP doctors standing over me for 8 to 10 hours, mapping out my hearts electrical system, looking for areas where the VT is propagating from, by actually getting the VT to happen and ablating those areas by burning them. Yeah that's Plan B. That's whats next.
Plan A worked. They gave me the drug and followed me for a couple of days in the hospital to make sure it suppressed the VT and didn't present any harmful side effects. It all seemed good and that's when they booted me from the hospital after eleven long days.
So, Gina and I our on our way to the Heart Failure Clinic for a check up to see how I have been doing since I left the hospital. Its about 9:10 when we park the car and start walking to the Anschutz Inpatient Medical Pavilion. I get a little winded and dizzy during that short walk. I chalk it up to my meds kicking in (I just took all my medications an hour or so before). The new drug they gave me, the antiarrhythmic, is also a beta-blocker which can lower the blood pressure so that what I think is going on, my BP is just low. I saw that it was low in the hospital and just assumed it was low still and that's whats making me a little dizzy. It surely did not feel like I was having any VT.
So we check in and shortly get called to go to the device clinic where they interrogate the implantable cardioverter-defibrillator (ICD). They put some EKG stickers on you and hook you up to the portable computer, then put a plastic doughnut looking thing over the ICD and start the download of info from the ICD to the computer. At this point the Tech leaves the room to go get some adhesive remover because she see all the EKG glue still all over my chest and wanted me to have some stuff to get it off later. That was very nice because I have a lot of that crap still on me and it doesn't come off easy. While she is gone the computer starts spewing out paper of whats been going on in my device since it was last interrogated. The last date of interrogation was that fateful day the eve of Halloween 2008. So needless to say there is a lot of stuff being printed. Gina and I are both pretty knowledgeable about how to read these print outs. I kinda want to wait and have the tech or doc tell us whats up but we look anyway.
And what do you think we see? We see that I had about 4 episodes of VT walking into the mother loving hospital that morning! Can you believe that? There were a couple other VT episodes a couple days earlier too. Holy Cow! Plan A is not working...
Next we meet with the good Dr B and he doesn't look too happy to tell me Plan A is not working. But we still have Plan B. We are going to continue Plan A but now we are also gonna do Plan B.
Plan B is Ablation. Ablation is a regular old word that you can use in you day to day life when you want to say that you are going to remove material from on object by means of chipping, vaporization or some other erosive processes. However, in my particular case it means that a week from today I will have 3 EP doctors standing over me for 8 to 10 hours, mapping out my hearts electrical system, looking for areas where the VT is propagating from, by actually getting the VT to happen and ablating those areas by burning them. Yeah that's Plan B. That's whats next.
Thursday, November 13, 2008
Anger Management
Today is a big day for me and my angry sarcoid. We, along with my lovely wife who I cannot say enough good things about, are off to visit, once again, the University of Colorado Hospital. However, this time we are visiting as out patients. I am scheduled to see my cardiologist at the Heart Failure Clinic.
The sarcoid has basically remodeled my heart, making it larger and less efficient. The less efficient part is the part that labels me as a heart failure patient. I just don't pump enough blood out of my left ventricular to the rest of my body. But I pump enough that my life is good and I can really do a lot like work, and play with my kid, and bike a little and ski a little and all those other good things. Life is good! It is not the heart failure that is my real problem right now its the VT.
So today the first thing they are gonna do is a device interrogation. That means they hook a computer up to my pacemaker and see whats been going on since they lasted looked at it. What they won't find is that the defibrillator did not fire. I would have know that. What we will find out if I have had any VT. Thats the big question. I haven't felt any so I don't think they are gonna find any but it is a "we'll see." If they find some I can't speculate on what that will mean for me.
Once they do that and draw some blood it is off to see Dr. B, the cardiologist who has been following me the closest and and making most of my health care decisions. He will discuss with me, my angry sarcoid and Gina the results of the device interrogation and what it means and what next course of action is going to be.
Once we are done with Dr B we are off to see Dr K, one of the electrophysiologist or EP docs. These are the electricians of the heart. Not to sure what they want to talk to me about but I always welcome talking to them as, if you might recall, I have some electrical issues with my ticker.
So, big day for us and I have great hopes that it is all going to work at well.
The sarcoid has basically remodeled my heart, making it larger and less efficient. The less efficient part is the part that labels me as a heart failure patient. I just don't pump enough blood out of my left ventricular to the rest of my body. But I pump enough that my life is good and I can really do a lot like work, and play with my kid, and bike a little and ski a little and all those other good things. Life is good! It is not the heart failure that is my real problem right now its the VT.
So today the first thing they are gonna do is a device interrogation. That means they hook a computer up to my pacemaker and see whats been going on since they lasted looked at it. What they won't find is that the defibrillator did not fire. I would have know that. What we will find out if I have had any VT. Thats the big question. I haven't felt any so I don't think they are gonna find any but it is a "we'll see." If they find some I can't speculate on what that will mean for me.
Once they do that and draw some blood it is off to see Dr. B, the cardiologist who has been following me the closest and and making most of my health care decisions. He will discuss with me, my angry sarcoid and Gina the results of the device interrogation and what it means and what next course of action is going to be.
Once we are done with Dr B we are off to see Dr K, one of the electrophysiologist or EP docs. These are the electricians of the heart. Not to sure what they want to talk to me about but I always welcome talking to them as, if you might recall, I have some electrical issues with my ticker.
So, big day for us and I have great hopes that it is all going to work at well.
Tuesday, November 11, 2008
Day 2 at Home
Well its day 2 at home and things are going well: I am still at home, I could be somehwere where I would rather not be. Feel a bit run down. Having a hard time sleeping and want to do more than I can but it is really tiring doing stuff.
We went to WalMart. I hate WalMart but that's where we went today. We needed some juice and stuff for Anna for her basketball team/practice that starts tomorrow. That was just a little too much; the lights, the shoppers, the christams music, all of it. I was glad to leave. I had to sit down twice, had to keep my sunglasses on the whole time.
Went home and had a tuna melt, a bowl of chili and then a nap. I am eating a ton. It could be the prednisone or me just burning calories but I am eating a lot.
Hopefully tonight will be filled with lots of sleep. And tomorrow I have some energy to do some stuff because there is stuff I want and need to do and that would make me feel useful again.
We went to WalMart. I hate WalMart but that's where we went today. We needed some juice and stuff for Anna for her basketball team/practice that starts tomorrow. That was just a little too much; the lights, the shoppers, the christams music, all of it. I was glad to leave. I had to sit down twice, had to keep my sunglasses on the whole time.
Went home and had a tuna melt, a bowl of chili and then a nap. I am eating a ton. It could be the prednisone or me just burning calories but I am eating a lot.
Hopefully tonight will be filled with lots of sleep. And tomorrow I have some energy to do some stuff because there is stuff I want and need to do and that would make me feel useful again.
Sunday, November 9, 2008
Day 11 Part 2
Its about 5:45 and I just got out of the shower. I took a 45 minute shower. I am still not clean. I had 27 EKG patches stuck to my chest and belly and legs and arms. I a still have glue stuck to my chest. I am going to keep my chest shaved just on the outside chance I have to have these on me again. They hurt coming off. There were a bunch pulled of during the stay too. I also had a defibrillator patches stuck to my back and chest the first 2 days as well.
Both doctors came by and gave me good news and sent me on my way. I was happy but it took a long time to get out of there. But I told them I would rather wait around getting everything strait to get out of there as opposed to waiting around when I got there.
Gina and I left at 3:00. We went to Chilis and I ate a big old hamburger with cheese and fries. I needed some real food. There is funny story about controlling my blood clotting but I'm too tired to write it now so look for it at a later date. No really there can be and is a funny story about blood clotting.
Now I have to figure out my medications (and eat them) and then to sleep.
Both doctors came by and gave me good news and sent me on my way. I was happy but it took a long time to get out of there. But I told them I would rather wait around getting everything strait to get out of there as opposed to waiting around when I got there.
Gina and I left at 3:00. We went to Chilis and I ate a big old hamburger with cheese and fries. I needed some real food. There is funny story about controlling my blood clotting but I'm too tired to write it now so look for it at a later date. No really there can be and is a funny story about blood clotting.
Now I have to figure out my medications (and eat them) and then to sleep.
Hospital Stay 3, Day 11, Year 2008
Just woke up from the 10th night in the hospital to day 11. I better be going home today! One more dose of the medication, a normal EKG and they better boot me outta here. I told the nurses to give me my medications first. The sooner I get the meds the sooner I get the EKG (2 hour delay between the meds and EKG), the sooner the docs can read it and say its normal and then sign the pluthera of paperwork to get me outta here.
Can it really be day 11?
I have had visits from friends from AZ, Aspen, and Denver, couple guys from work and a couple guys from the neighborhood But nothings better than the visits from Family. My parents came out, Brother Bill came from Vero Beach, uncle BoBBy was here all the time, Aunt Jacqui visited, as did Dee-Dub and Meredith. Shauna and Rob were here. Were there others? Things are kinda hazy after 10 nights. But of course the best and most faithful visitor was my lovely wife Gina, without her I don't know what I would do? And I can't forget Anna. I know its hard for her to be here but I am thankful for every moment we are together.
3 Hospital stays, 3 emergency room visits, 2 ambulance drives, 2 911 calls, 6 or 7 defibrillator shocks, 1 shower, 0 cups of coffee, numerous blood draws and IVs, a million different beeps and sounds from all the monitors, a couple laps around the floor, PET scans, chest x-rays, a boat load of pills, a bunch of EKGs, a ton of Cardiac Diet breakfast lunch and dinners, and on and on and on... What a crazy couple of months we have had?
Oh and the WetzelFamily.net web site needs to be registered again and today is the last day. I deferred doing it thinking that I would be home in time to do it but I'm still in the hospital. Once I get out its gonna be a shower nap and then bed time with food between all of them.
Ok I am now cleaned my self up, cleaned up room 1027, up, ordered breakfast, and seen the first of 3 or 4 doctors. He just comes in and gives a general overall health exam and says it looks good. Now a cardiac surgeon just came in and I don't know why? Maybe because it sunday and he is the one stuck working. I told him I was expecting him and that he was the one to sign all the paper work to get me outta here and he just stared at me. I said I just made that all up but am feeling fine and ready to go home. He said they will see me later and let me know. I am really waiting for either or both Dr B and Dr S (Plumber and Electrician respectively) to give me the official go ahead. Breakfast is here. I must eat my last veggie omelet with salsa (forgot to order the turkey sausage)...
Done eating and am back to waiting. I got up at about 3:00 am so I have be waiting for 5 hours now...
Can it really be day 11?
I have had visits from friends from AZ, Aspen, and Denver, couple guys from work and a couple guys from the neighborhood But nothings better than the visits from Family. My parents came out, Brother Bill came from Vero Beach, uncle BoBBy was here all the time, Aunt Jacqui visited, as did Dee-Dub and Meredith. Shauna and Rob were here. Were there others? Things are kinda hazy after 10 nights. But of course the best and most faithful visitor was my lovely wife Gina, without her I don't know what I would do? And I can't forget Anna. I know its hard for her to be here but I am thankful for every moment we are together.
3 Hospital stays, 3 emergency room visits, 2 ambulance drives, 2 911 calls, 6 or 7 defibrillator shocks, 1 shower, 0 cups of coffee, numerous blood draws and IVs, a million different beeps and sounds from all the monitors, a couple laps around the floor, PET scans, chest x-rays, a boat load of pills, a bunch of EKGs, a ton of Cardiac Diet breakfast lunch and dinners, and on and on and on... What a crazy couple of months we have had?
Oh and the WetzelFamily.net web site needs to be registered again and today is the last day. I deferred doing it thinking that I would be home in time to do it but I'm still in the hospital. Once I get out its gonna be a shower nap and then bed time with food between all of them.
Ok I am now cleaned my self up, cleaned up room 1027, up, ordered breakfast, and seen the first of 3 or 4 doctors. He just comes in and gives a general overall health exam and says it looks good. Now a cardiac surgeon just came in and I don't know why? Maybe because it sunday and he is the one stuck working. I told him I was expecting him and that he was the one to sign all the paper work to get me outta here and he just stared at me. I said I just made that all up but am feeling fine and ready to go home. He said they will see me later and let me know. I am really waiting for either or both Dr B and Dr S (Plumber and Electrician respectively) to give me the official go ahead. Breakfast is here. I must eat my last veggie omelet with salsa (forgot to order the turkey sausage)...
Done eating and am back to waiting. I got up at about 3:00 am so I have be waiting for 5 hours now...
Thursday, November 6, 2008
So it was the day before Halloween 2008 when she said it was angry. My wife Gina was at the appointment when she said it. It stuck in my mind: angry sarcoid. I went back to work and a colleague asked how the appointment went and I curtly responded "well I'm not in the hospital." He didn't ask another question and quickly disappeared. That was indeed a portentous statement I made as it would come true by the end of the night.
Gina and I were both cranky and Anna wasn't listening so she was getting in trouble. I had to walk Mallory. For her as much as me. We went for a 35 minute walk around the neighborhood. I record all of my exercise so I had the stop watch on and knew how long we were gone for. But when I got in front of the house 2 down from mine I was really winded: bad bad sign. Made it home and sat in the chair in the living room. Anna came down and wanted me to kill a really big annoying fly in her bedroom but I said I needed to rest. Minutes later the defibrillator fired and I screamed "OUCH!" Gina knows what that means. Then it fired again: really really bad sign. 911 call. Anna trying to console me with the photo album from the summer of 2007. Gina's calling friends to get Anna, calling Uncle BoBBy. I was balling my eyes out because I don't get to trick-or-treating with Anna. That's what really pissed me off!
The firemen show up first, then a couple minutes later the paramedics. Anna puts Mallory out back as soon as the first truck arrives. I talk them into just putting one IV into me. And then we demand to be taken to the University of Colorado Hospital. We learned our lesson the first time that I got shocked (about 3 weeks before, the night of Gina's birthday party). They comply and take me there. I try not to watch the EKG as a we travel, sans lights and sirens, down the highway to CU. I get my cell phone out and call the Heart Failure Fellow on call doctor just to let him know I am coming.
The ambulance bay was full so it took a little time to get parked. As they were getting ready to unload me the damn defibrillator fires again, and then again. I am yelling (not nicely) at them to get me into the ER. Serendipitously, my dear and lovely wife Gina arrived at the same time, notices the ambulance, but did not think it was me until she hear me screaming at them. Then they don't know the numbers to punch into the door to get in. Someone finally gets the door open, and alas I have made it to the ER at CU...
This is all second hand knowledge on my part but as I have been know to say "its he truth even if it didn't happen." (or did Ken Kesey say that and not me?) Gina needs to go through the regular doors to get into the ER. Of course she is crying. Once in she goes to the front desk and states that her husband just came in with an ambulance and that she needs to get back here to him. They tell her it will be about 10 minutes. I don't believe that that sat well with her but much to my chagrin she accepts it at face value. If you know Gina that response she got is totally unacceptable and she would be all over that guy letting him know in no uncertain terms that the correct response is "right this way." Obviously, Gina is not thinking clearly. She needs advice from someone who would know what to do. Who to call? So she calls a friend and her friend says you need to tell them to get you back there now. That advice works and she joins me in a giant ER room surrounded by docs and techs and fireman and other such persons of interest. I don't know how Uncle BoBBy gets in but he is there too. I guess doesn't he take no for an answer when the chips are down. I need to hear his story.
OK...so now all the right players are in the right location and I can relax. I am a little hazy on what happened next. But I had and continued to have ventricular tachycardia (heretofore referred to simply as VT). I make my way up to the 10th floor, via a bed with wheels and an entourage of care givers, family and docs, to Cardiac ICU, where 3 nurses are waiting for me. I think I get a dose of liquid prednisone into my IV and the VT occurs less frequently. I finally fall asleep. No I don't, there is no sleeping or resting in the hospital. I am finally not awake.
It must be Halloween by now.
Wednesday, November 5, 2008
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