Ok even thought my leg is really bothering me a few people are looking for this so here is the rest. I reread the first part and made a few corrections. I will try not to make it as long. The first part in green is just a quick repeat refresher from the last post.
We talk a few minutes and I asked him a few questions. I asked him if he would come and see me in my room that night so that we could kinda talk long term but not set in stone plans. He said he didn't know if he could because he had another case to do but we would talk.
I asked him how many more Ablations he could do and what was the next step. He told me that just because he did 10 Ablations (he picked a number out of the air) is was not strike out and that was it. He left and went to do his other case. I was still in a lot of pain and the Motrin still hadn't helped any and I was now getting a sever headache, my groin was hurting cause the freezing was coming out and I was getting sick to my stomach so I got some gravol. The anesthetist came by to see me and said I could have some Demoral for the pain. When I got that I had no pain anywhere. But then I really was sick to my stomach and the gravol did nothing. So they took the sheeths out and took me back to my room. I came out of the Cath Lab at 1:30 pm or that was when I came around and was taken up to my room at 4:30 pm.
I still had to lay flat for another 4 hours with my leg straight. The first 2 1/2 hours I did good. I kept my leg straight. Then at about the 3 hour mark with the nurse in the room I must have bent my leg to a 90 degree angle 3 times and then quickly straightened it back out. Oh well whats the difference. Well Dr. Downar didn't come to see me tonight which in one way was fine because I fell asleep from 7 till 9 when the nurse woke me up to get me up. I got up and went to the bathroom after they fisinshed bugging me and fussing because my blood pressure was only 85/55. The nurse called Dr. Downar cause Motrin was not ordered for me and I wanted my regular drugs but because my blood pressure was low they didn't want to give them too me. Well I guess Dr. Downar told them to give me what I wanted cause I got my drugs. The nurses wanted me to walk and all I wanted to do was sleep. Well I won out I went to the bathroom which I had to do badly(hadn't been since 7:15 ish that morning) and then went back to bed till about midnight. I got up again then to use the bathroom and then right back to bed. That happened once more and then I woke up at 6:30 am. That was the first time I had several hours sleep all at once since Monday night. I fell asleep at 2 am Tuesday morning and got up at 7 am. Went to sleep at 3:30 am Wednesday morning and got up at 6 am. So I really hadn't slept alot the last few days. Well you really can't count my two drug induced rests.
So Thursday January 17, 2008. The day I come home. Well I get started packing my bag and then decided I am not really out of rhythm but not really in sinus rhythm either. So now the fun begins.I asked my nurse if I was schedualed to go to the pacer clinic and she said they were waiting to hear back from them. So the EP Nurse Clinician sees me and says " so what are you doing to yourself". I said I was coming to get towels for a shower. She said my rhythm was out. I said I wondered cause it didn't feel like it was out but then again it didn't feel like it was in sinus either. So she told me they had called Dr. Downar and was waiting for him to call back with what to do. I said ok I will go sit in my room and wait to hear what is happening. She came in and said that Dr. Downar was sending up one of the pacer techs to over ride the pacemaker. So I asked her if I was going to the Pacemaker clinic and she said she didn't know. I said well if I am which I should be cause I always do then just send me there and for get the Pacer guy coming up. She said that he was coming and that he would do what needed to be done. I told her no he wouldn't that he would only terminate the rhtythm and that was it. I said that Dr. Harris had made some changes to the pacer in November and I had made some changes to my meds and that the pacer needed to be interrogated to see if the changes were acceptable. Plus I told her Dr. Harris is the only one I have been allowing to make alterations to my pacer. So they called Dr. Harris and she came up to see me. After talking with her for a bit she ended up interrogating the pacer and making a few changes. They were going to send me down to the pacer clinic but since Dr. Harris was the one running it there was no point she was here in the room so they just dealt with it then.
Well now I have a shower and eat the rest of my breakfast and am packing and I am out of rhythm agian. This time I never bother saying anything to anyone but my mom who is now here. Told her what the hassel this morning was. So I asked the nurse a few questions and she said Dr. Downar was coming up to see me before I got discharged. Originally I would have been discharged with seeing no one or no answers. Should have kept my mouth shut. I was told that Dr. Downar would not be there before 11 am to see me. Ok it is like 10 am now so no big deal. Well 11:30 am they want the room no Dr. Downar. So they call him. Finally they came back and said he was coming but it would not be for another hour or two but probably closer to two. So I said to them well I have to go over to his office after I see him anyway to book my follow up appointment why don't I just see him there. So they came back and said no he said he wanted to see me on the floor. Mom and I said we had to be out of the hospital by 1 pm sharp cause we had an hours drive at least and had to be back to pick up Mackenzie at the school bus at 4 pm. We didn't we just didn't want to sit around and wait any longer. Mom went to get lunch. So then the nurse came back and said he is in his office right now call him. So we did and Julie was not in the office. Finally they came and said go to his office and that I could get my discharge letter from him there.
So we go over to his office. Again he tells me that things went well. Told me that he was getting depressed while he was mapping the electrical circuit because part of it wasn't making sense and he wasn't getting anywhere. So he decided to scrap what he had done and started over. Once he did that he got some success and was pleased with that. Apparently this arrhythmia was down in the Tricuspid Valve nub that I have and was very difficult to map and burn. He told me he got it and it was successful. Then he proceds to tell me he had to over ride the pacemaker again yesterday in the Cath Lab because I was out of rhythm then also. So this makes three times in three days they have had to over ride the pacer. NOT GOOD. He tells me I can increase my meds if I need but is doubtfull they will do much on a prolonged basis. He also said to carry some meds with me so that if I go out of rhythm I can take the meds and slow the rhythm down so hopefully I would not be out as long. He tells me that they are in the middle of conferencing on what they should be doing with me since the ablations are not working. So I ask him how many ablations he can do and he says there is no limit but that there is no point in doing them when they are not even lasting 24 hours (12 hours if we are really lucky). So he said he has Dr. Cameron the "pacemaker guru" working on finding out what can be done with the pacer I have OR if there is a newer one they can replace it with. Or if there is something they are missing on this one. Sounds like he is now as pissed as I am cause he said that all three times they manually over rode the pacer it worked. But when the pacer is left on its own to work it works 20% of the time. He said that this was not acceptable and that IF I have any problems at all call him ASAP adn he will bring me right in and they will play with the pacemaker and see what they can do. He hasn't given me much hope that things will be undercontrol any time soon.
So now I sit and wait and hope that they can come up with a solution before things get as bad as last year or worse. I had 450 documented episodes last year and close to 150 undocumented episodes last year.
Well thats my story and now that my leg is killing me I am going to bed.
IF you read all this thanks very much I really appreciate it all.