Headed back to Cleveland tomorrow and I'm a little anxious to say the least! I am not looking forward to the esophagus test that I have to do tomorrow at 1:30. I can't eat anything from 7 am tomorrow until after the test...which I'm not a breakfast person anyway, so I won't eat anything past dinner tonight. Tomorrow is mainly a bunch of tests and then Wednesday will be the appointments with the doctors. Doug and I won't head out until tomorrow morning since I don't have to be there until 10:30 for bloodwork. My last appointment of the day is at 1:30 for the lovely test...then who knows what. If anyone knows what we can do in Cleveland for the afternoon/evening, please let me know! :)
Wednesday will start out with my usual lung function test and 6 minute walk. I'm a little nervous about those results as well since my lung capacity has decreased 10% in just one years time. We'll meet with the gastro dr. and I'm going to ask him about the possibility of acid reflux surgery. I've found some things online linking acid reflux and my specific lung disease. Acid reflux can aspirate into the lungs and actually cause what's been going on with me. I've been told I have mild reflux, and I've also found that having acid reflux surgery could help improve lung funciton. It's worth a shot, right?!? I'm also going to ask my pulmonologist the same questions in hopes that I could get at least some relief in the meantime. Doug and I will also meet with one of the surgeons and see what he has to say.
We were told the last time we were there in September that the doctors will then all sit down and discuss my case and then decide if it's time to list me or not. I am not sure how long of a process this is...I'm hoping that it won't take too long for a decision as I am so impatient now as it is! :) My blood type is AB+, which is more rare...so maybe that will work in my favor and get me on the list. That is the part that really stinks and is really hard...knowing that someone else has to die in order for me to live. I really wish that there was some other way!
On a happy note, I had a most wonderful weekend full of love and laughter. :) My cousin came in from Montana on Thursday and stayed with us until yesterday morning. It was so great to see her and spend time with her even though it was for a short amount of time. She and I went to pick up our grandpa on Saturday and bring him back to my house for a little while so that we could all visit and he could see his great-grandkids. He will be 88 tomorrow and he looks great! He was telling me that he has cheated death 5 times and told me about each time. He told me that he knows I am strong and that I just have to keep fighting. I told him about my butterfly story and how I know that grandma Neff is always with me.
I'm still that caterpillar...but I'm making my way up that tree hoping to make my cocoon soon! :)
Monday, October 31, 2011
Tuesday, October 25, 2011
ER visit
I don't think that I could ever be a druggie. While I have to take many medications for everything I have I would much rather be "drug free". (wouldn't we all?) Seriously though...Doug took me to the ER (Good Sam) Sunday night/Monday morning. At 10 pm Sunday I started feeling a lot of pain again in my upper right back and in my upper right chest. It hurt worse when I would inhale, so I was taking shorter breaths so it wouldn't hurt as bad. Doug had to work his 6 pm to 6 am shift but came home about 1 am or so when I told him the vicodin that I took at 10:30 wasn't helping at all.
Getting to Good Sam, they did an EKG and a chest xray and of course both came back as ok. I was thankful for that, but my pain was still there. I think knowing that I am being followed by Cleveland Clinic is what makes these doctors not know what to do...or that they don't even want to touch me for fear of doing something wrong in the eyes of "The Clinic". So they gave me Morphine through my IV line as well as Toradol. I instantly felt the pain go away which was great. But then I felt the room spinning and like I had been out all night drinking. (hadn't felt that way in a LONG time!) :) So anti-nausea medication immediately followed and I was able to keep my cookies from being tossed. (thank goodness!) But I had Doug on his toes waiting for something exciting to happen. haha! Back to the druggie part though...I was so out of it and very loopy. Doug said the ride home was fun and interesting and he wanted to tighten the cord to my O2 around my neck a little so I would pass out and be quiet. :) (he was just kidding by the way...I think...)
We got home about 7:30 am and I thought I would sleep like a baby, but I was sadly mistaken. I didn't sleep well at all and still felt groggy from the morphine and woke up still hurting. I had very weird dreams and just felt really off all day. I told Doug I don't think I ever want those drugs ever again because of the way that I felt. So like I said, I don't think I could ever be a druggie. I did not like what I was experiencing at all! Just a few more days and we will be headed back up to Cleveland to finish testing and meeting with doctors. I sincerely hope that after the dr's discuss my case that they will finally list me. If I do not get listed, I don't know what I will do as this pain is getting to be too much anymore. :(
Getting to Good Sam, they did an EKG and a chest xray and of course both came back as ok. I was thankful for that, but my pain was still there. I think knowing that I am being followed by Cleveland Clinic is what makes these doctors not know what to do...or that they don't even want to touch me for fear of doing something wrong in the eyes of "The Clinic". So they gave me Morphine through my IV line as well as Toradol. I instantly felt the pain go away which was great. But then I felt the room spinning and like I had been out all night drinking. (hadn't felt that way in a LONG time!) :) So anti-nausea medication immediately followed and I was able to keep my cookies from being tossed. (thank goodness!) But I had Doug on his toes waiting for something exciting to happen. haha! Back to the druggie part though...I was so out of it and very loopy. Doug said the ride home was fun and interesting and he wanted to tighten the cord to my O2 around my neck a little so I would pass out and be quiet. :) (he was just kidding by the way...I think...)
We got home about 7:30 am and I thought I would sleep like a baby, but I was sadly mistaken. I didn't sleep well at all and still felt groggy from the morphine and woke up still hurting. I had very weird dreams and just felt really off all day. I told Doug I don't think I ever want those drugs ever again because of the way that I felt. So like I said, I don't think I could ever be a druggie. I did not like what I was experiencing at all! Just a few more days and we will be headed back up to Cleveland to finish testing and meeting with doctors. I sincerely hope that after the dr's discuss my case that they will finally list me. If I do not get listed, I don't know what I will do as this pain is getting to be too much anymore. :(
Saturday, October 22, 2011
Getting Started
So as I tried to sleep last night I thought that perhaps I should start blogging. I've never blogged before but thought that it would be a good idea to start so I could keep everyone updated with my health since I do not get out much. :) Blogging will also give me something to do. Those of you that know me know that I need to have something to do! I went from going 100 mph down to like 5 mph and it's been hard! I miss working and seeing my co-workers. I also miss photographing the newborns and their first moments of life. I am hopeful that I will be able to get back to work after my transplant, it's just a matter of when and if I will be crazy at that point in time! :)
I don't have much of an update to give health wise. Doug and I will be going back to Cleveland November 1 and 2 and I will complete testing for transplant. I have to re-do one of the gastro tests and I am not looking forward to that one. I had told Doug after doing that test back in April that I hope I never had to re-do that test. Well, guess what? That's the one test (and the only one) that I have to re-do! The Cleveland doctor thinks that the results to this test aren't as bad as what the Dayton doctor thinks so that is why he is re-running it. We will speak with one of the cardiothoracic surgeons on the 2nd and he will go over what we can expect. I am interested to see what my lung function is compared to what it was the beginning of September. September 2010 my lung capacity was only 30%. September 2011 it dropped to being only 20%. I've lost 10% of my lung function in just a year! The doctors will all sit down and discuss my case and then decide if they are going to go ahead and list me or not. I am not sure how long we have to wait to hear that I will be listed. I hope that it won't be too long of a wait, but I do know we will not know anything while we are up there.
Over the last few weeks I've felt pretty achy and really short of breath. I did start getting an upper respiratory infection and called my doctor right away who prescribed me some antibiotics and he increased my prednisone. My chest is still feeling really tight and like I am breathing through a tiny hole made in plastic wrap. The oxygen has helped me quite a bit and I'm glad that I have been able to use that at home and at night. I still get out of breath walking around even with the O2 on, but it would be much worse without it on, so I'm thankful for even the tiniest bit of relief. :)
I don't have much of an update to give health wise. Doug and I will be going back to Cleveland November 1 and 2 and I will complete testing for transplant. I have to re-do one of the gastro tests and I am not looking forward to that one. I had told Doug after doing that test back in April that I hope I never had to re-do that test. Well, guess what? That's the one test (and the only one) that I have to re-do! The Cleveland doctor thinks that the results to this test aren't as bad as what the Dayton doctor thinks so that is why he is re-running it. We will speak with one of the cardiothoracic surgeons on the 2nd and he will go over what we can expect. I am interested to see what my lung function is compared to what it was the beginning of September. September 2010 my lung capacity was only 30%. September 2011 it dropped to being only 20%. I've lost 10% of my lung function in just a year! The doctors will all sit down and discuss my case and then decide if they are going to go ahead and list me or not. I am not sure how long we have to wait to hear that I will be listed. I hope that it won't be too long of a wait, but I do know we will not know anything while we are up there.
Over the last few weeks I've felt pretty achy and really short of breath. I did start getting an upper respiratory infection and called my doctor right away who prescribed me some antibiotics and he increased my prednisone. My chest is still feeling really tight and like I am breathing through a tiny hole made in plastic wrap. The oxygen has helped me quite a bit and I'm glad that I have been able to use that at home and at night. I still get out of breath walking around even with the O2 on, but it would be much worse without it on, so I'm thankful for even the tiniest bit of relief. :)
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