I still have yet to hear anything from Cleveland in regards to if I am going to be listed or not. It has been almost a month since I was there last and to be honest I am starting to get really antsy. I had spoken to my transplant coordinator early last week because I had been on a z-pack for a cold I had. I asked her then if the doctors had discussed my case and she said no, but she was getting ready to go through the surgeon's notes and get things ready. I was really hoping that my birthday wish would come true and I would get a call this last Monday...but no such luck. :( I emailed my coordinator and asked her if she knew when my case might be presented...but I have yet to hear back from her in that regards. :( Why does everything have to take so long? I'm just so tired of feeling so cruddy all of the time. Tired of putting a smile on my face and pretend all is well when it really is not. Tired of not being able to do pretty much anything that I used to be able to do. I am thankful for my life, thankful to still be here, thankful for my family and friends....if I didn't have all of this wonderful support I would be craizer then I already am! :)
That's all for now...I just wanted to post something about still not knowing anything in case anyone was wondering. ;)
Wednesday, November 30, 2011
Monday, November 14, 2011
Monday, Monday, Monday
So in my "old life" I always dreaded Mondays....the weekend was over and it was the start of a new, usually 5 day, work week. I wish now that I wouldn't have dreaded those Mondays, but instead welcomed them. A new day that you are alive and breathing should be one to be celebrated. You should be happy to get up and get going in the morning and go to work...thankful for a job to pay the bills, "socialize" with others...no matter how tedious the work or how much there's that "one person" you just can never get along with. Today, I would much rather have the dreaded Monday morning "gotta get up and go to work" then sitting around the house not being able to do much of anything in fear of not being able to breathe.
I am a bit anxious today that it is Monday. For the next few weeks I will be looking forward to the Mondays that I once hated. I'm waiting to hear back from Cleveland in regards to if they are going to put me on the list or not. The only thing I know is that the doctors meet on Mondays (not sure mornings...or afternoons...or all day...) and they will discuss my case in the next few weeks. I've only had 1Monday since I was at Cleveland last and I honestly don't expect to hear anything until probably the end of the month. However, I am still anxious each Monday that rolls around and wondering if I will get the call to be listed. My birthday is on the 27th and is on a Sunday...I told Doug hopefully I will have a wonderful birthday present with a phone call to list me on the 28th. So we will see. I just emailed my transplant coordinator this morning about something else and asked if she knew when they would be meeting about my case. I'm anxiously waiting to hear back from her. :)
Tomorrow I am headed back to one of the two rheumatologists I've seen over the past 2 years. The pain I've been having in my chest and back just aren't going away. I've also had headaches almost daily that ibuprofen doesn't even help. I've had to decrease my prednisone (steroid) dose to 10 mg in order to do transplant and I think being on the higher dose has made me not aware of the pain before. I'm not too thrilled with this rheum. that I am seeing tomorrow as he does not believe Cleveland and that I am as bad as what they say. I haven't been to him since January, so I'm a little anxious about my appointment tomorrow. Doug has to work tomorrow evening, and my appointment is at 4 in Dayton...but I am hoping that he can go with me and maybe go in to work a little late.I just don't know if I want to handle this doctor on my own. ;) My pulmonologist in Cleveland threw out fibromyalgia...so we will see. I do have some of the signs and symptoms,especially where the pain is located. I hope that he will be able to help me with pain management. I surely don't like taking vicodin nearly every day just in order to sleep at night. :(
As soon as I get that phone call, I will make sure to post and let everyone know. Thank you all for your continued support, prayers and love! :) I sure am one lucky gal!
I am a bit anxious today that it is Monday. For the next few weeks I will be looking forward to the Mondays that I once hated. I'm waiting to hear back from Cleveland in regards to if they are going to put me on the list or not. The only thing I know is that the doctors meet on Mondays (not sure mornings...or afternoons...or all day...) and they will discuss my case in the next few weeks. I've only had 1Monday since I was at Cleveland last and I honestly don't expect to hear anything until probably the end of the month. However, I am still anxious each Monday that rolls around and wondering if I will get the call to be listed. My birthday is on the 27th and is on a Sunday...I told Doug hopefully I will have a wonderful birthday present with a phone call to list me on the 28th. So we will see. I just emailed my transplant coordinator this morning about something else and asked if she knew when they would be meeting about my case. I'm anxiously waiting to hear back from her. :)
Tomorrow I am headed back to one of the two rheumatologists I've seen over the past 2 years. The pain I've been having in my chest and back just aren't going away. I've also had headaches almost daily that ibuprofen doesn't even help. I've had to decrease my prednisone (steroid) dose to 10 mg in order to do transplant and I think being on the higher dose has made me not aware of the pain before. I'm not too thrilled with this rheum. that I am seeing tomorrow as he does not believe Cleveland and that I am as bad as what they say. I haven't been to him since January, so I'm a little anxious about my appointment tomorrow. Doug has to work tomorrow evening, and my appointment is at 4 in Dayton...but I am hoping that he can go with me and maybe go in to work a little late.I just don't know if I want to handle this doctor on my own. ;) My pulmonologist in Cleveland threw out fibromyalgia...so we will see. I do have some of the signs and symptoms,especially where the pain is located. I hope that he will be able to help me with pain management. I surely don't like taking vicodin nearly every day just in order to sleep at night. :(
As soon as I get that phone call, I will make sure to post and let everyone know. Thank you all for your continued support, prayers and love! :) I sure am one lucky gal!
Saturday, November 5, 2011
You'll Shoot Your Eye Out.....
Doug and I at the house used in A Christmas Story. We would love to go back with the kids and have a family picture taken out front! :) I would also love to go back at night and see the leg lamp all lit up. :)
Doug and I at the house used in A Christmas Story. We would love to go back with the kids and have a family picture taken out front! :) I would also love to go back at night and see the leg lamp all lit up. :)
Thursday, November 3, 2011
Cleveland Trip 11/1 and 11/2
Just a forewarning that this will likely be a long post. :)
Doug and I left early Tuesday morning bound for Cleveland. First on the agenda was the usual bloodwork, CT scan of my chest and chest xray. This time I was lucky to get away with only 10 vials of blood taken from my left arm and 1 from my right! I finished all 3 of these tests by 11 am and my next and final test of the day wasn't until 1:30 in a different building. Much to my surprise when we were getting ready to leave the main building to go to the Crile building, I ran into someone I knew from back home here! I won't say who it was (don't want to violate HIPPA) ;) but it was so funny to go all the way there and be in a HUGE place and run into someone from back home. Small world. (I really hope that they found the answers they were looking for!)
We couldn't eat lunch because of the test I had to do required me not to eat from 6 am that morning until after the test. this would be the really fun stomach test I've been talking about. Esophogeal Motility test....loads of fun!! Doug and I went ahead and went over to the next test at 11:30 in the hopes I could get in earlier. We only had to wait an hour, so that wasn't too awful bad. Doug wanted to come back with me and watch this test and they let him. Boy was he in for a treat! :) This was the test that they put a tube down your nose (numbing spray in the nose first) then the tube goes down your throat and to your stomach. Once the tube was in place I had to lie on my left side while the tech gave me tiny sips of water. I had to try and only swallow the water. If I coughed or swallowed before the next time she gave me more water the "timer" started over again and I had to wait 30 more seconds. I had to swallow water 12 different times before they were able to take the tube out of my nose and I was finished. I was so glad that test was over! It actually wasn't as bad as the first one I had done in Dayton. (although still not pleasant!) I told the tech this and she told me that I was actually the first person that she has tested! (there was another tech in the room with her) I was so glad that she didn't tell me this first or I would've bolted from the room! Before we left we were talking about getting a bite to eat and being done for the day and they were giving us ideas of where we could go. In conversation the tech that did my test asked where we lived and we told her 3.5 hours away; about an hour north of Dayton. We had said Versailles and she said that she had stayed at the Inn and knew exactly where that was. Small world!
Doug and I grabbed a bite to eat at the Clinic and then left to stake out where we were going to meet up with friends for dinner that night in Little Italy. We also wanted to go check out the house that was used in The Christmas Story movie. The house is open to the public to go through but only Thur-Sun; so it was closed when we were up there. :( It was still neat to find it and we did take some pictures of the outside. The infamous leg lamp shone brightly in the window! :) It was still pretty early, but we checked into our room and rested up before dinner with our friends later that evening. Dinner was great (Mama Santa's in Little Italy) and it was great to eat dinner with Jody and Jon Shy! Our waitress was a riot and gave us some Milky Ways before we left...my fave! :) Doug and I both thought we would sleep great that night because we had an early start to the day and we were exhausted...however we both didn't sleep very well at all. :(
My first appointment was at 9 am to do my lung function test. My FEV1 (forced expiratory volume) was 20%....no change from September. Which is good...but still a very low number. The tech also did the usual blood gas, which is a reading of your oxygen level and is taken from the main artery in one of your wrists. Mine was 92.5%, that number has dropped just a little. It was a little over 93% in September. Lastly I did the 6 minute walk again. I started out on room air, but once again about 1.5 minutes into the walk I had to be put on oxygen. I was on 2 liters and was able to maintain that pretty well.I walked a little further then I did in September, so I was happy about that.
The next appointment for me was with the gastro dr. to go over the results of the fun stomach test I had done the day before. He said that it was good news...and that he would clear me for surgery! The same test I had done in Dayton...this doctor in Cleveland said the results looked worse then what he thought they really were. That is why he repeated the test. He said that the results showed that I do have mild reflux and that I may need to have surgery to correct this later on after I would have transplant. He said there was a little bit of wearing away of my esophagus from the acid reflux but that it wasn't very bad at all.
Doug and I met with the social worker next and she also went ahead and cleared me for surgery!
Dr. Akindipe (ah-kin-dip-e) (I had to write down how to actually sound his name out and practice it because I had no clue!) is my pulmonologistand we met with him next. (I'll refer to him as Dr. A) He asked me how I had been feeling. I told him it just depends on the day. I told him about the pain in my upper right chest that at times moves to the other side in my back. He told me that the pain is not associated with my lungs at all and he is unsure where the pain is coming from. He said that I will not feel the pain when it comes to my lungs...which...confuses me because I have a lot of chest tightness and I know it's not my heart so would assume this would be my lungs...?? Anyway, he wants me to visit with my rheumatologist again (in the middle of trying to find a different one!) because he is sure that it probably has something to do with my Rheumatoid Arthritis (RA). He mentioned possibly having Fibromyalgia...but again told me to see a rheum. He was going to try and set me up an appt. to see one yet that day but it was already 2 pm and we had to meet with the surgeon at 3. He asked if we could stay another day and they could get me in tomorrow but we said no. That would've been 3 days there in a row and Doug had to work today...and for just 1 appointment? No. He asked if we could come back next week and we weren't going to drive 3.5 hours one way for just 1 appointment. So on to finding someone back here.
Dr. A then talked about transplant and how we were feeling as well as his thoughts on the issue. (because I asked him his thoughts on the issue) He went on to tell me that on numbers alone (my lung function result numbers) that if he were to present his colleagues with just my numbers and nothing else about me that they would list me right away. So in other words, my numbers are horrible. He went on to say "but..." since I seem to be doing ok with oxygen and only on 2 liters when sleeping and doing activity that he thinks I am "too healthy" to be listed. He went on to say that we have to keep in mind that the longer we wait the better because the outcome after transplant is so unclear. The odds are that 5 years post-transplant that only 50% of the patients are alive. I believe he said that 10 years post-transplant that 25% are alive. Given that I am 34 years old and in relatively ok health (haha) then I could buy more time and wait...in essence I could still get another year or two out of the lungs I have. He said that he would present my case in an upcoming meeting (they meet every Monday) and they would decide if they would list me. He said to be honest he would probably throw out there that I am not ready to be listed yet. I told him my only concern with that is my blood type. I am AB+, and so I have to be matched with an AB+ donor and they also have to be close to the same size as me. AB+ is of course more rare...so I could be on the list a long time waiting...but there aren't going to be a lot of AB+ people waiting on the list, so my odds of getting lungs is good....that is if there is an AB+ donor. Anyway, he wrote this down and said that was a very good point and something to definitely take into consideration when they meet.
I do understand where he is coming from, but it is so hard to digest all of this information. Knowing that my numbers are so bad...knowing that I have a rare blood type I want to get listed. I also have to find out why I am having the pain in my chest and get that fixed (if possible)...because he said if I am having that now I will have it after transplant since it has nothing to do with the lungs. I had to get another Hepatitis B shot (already had the 3 doses and thought I was done) but the blood test was negative for it so I had to get another. I surely hope that this dose takes!!
Lastly we met with one of the surgeons. We had to wait an hour before he finally came into the room...and then he only met with us for like 10-15 minutes. It was crazy! He said he looked over my records and said that he doesn't see anything that would get in the way of transplant and that he okays me for surgery. He said that they will go over my case in the next few weeks and decide if I will be listed. I asked about the numbers and how that works and he said a number of say 20 is really low and someone that will be waiting a long time for lungs. A number of 90 is someone that is really sick and is in the hospital and needs lungs ASAP. So if I were to be listed, I would have a lower number because I am still able to function pretty well. I told him about my rare blood type and said that it concerned me about not getting on the list right now. I asked him if I were to be listed but wasn't ready yet for the lungs about declining the lungs. He said that we can't decline lungs simply because I am not ready for them or I would be kicked off the list completely.
So I do not know what to think at the moment. I am getting along, but I am just scared for the fact that at any moment this roller coaster ride will go barrelling down the hill too fast for me to keep up. I've become a member of a facebook online support group of pre and post transplant lung patients and there are so many that have had transplants 10-15-20 years ago and are doing great. That gives me such great hope. I also know that there are some that do not make it either. There was a 31 year old woman that just recently passed away in the hospital waiting for her lungs to come. I am so scared to get to that point in the game. I am trying to put my trust in God, and that has been a really hard thing just because I feel like I should be the one in total control. In the grand scheme of things I know that I am not. He is. I just want to be here to grow old with Doug...to watch my kids grow up, graduate high school, get married, and have kids. That's what most people want. I am blessed to have such wonderful family and friends and I love you all!! Once I find out what the decision of the doctors at Cleveland is, I will be sure and let you all know...until then....I'm still that caterpillar inching my way up that tree...
Doug and I left early Tuesday morning bound for Cleveland. First on the agenda was the usual bloodwork, CT scan of my chest and chest xray. This time I was lucky to get away with only 10 vials of blood taken from my left arm and 1 from my right! I finished all 3 of these tests by 11 am and my next and final test of the day wasn't until 1:30 in a different building. Much to my surprise when we were getting ready to leave the main building to go to the Crile building, I ran into someone I knew from back home here! I won't say who it was (don't want to violate HIPPA) ;) but it was so funny to go all the way there and be in a HUGE place and run into someone from back home. Small world. (I really hope that they found the answers they were looking for!)
We couldn't eat lunch because of the test I had to do required me not to eat from 6 am that morning until after the test. this would be the really fun stomach test I've been talking about. Esophogeal Motility test....loads of fun!! Doug and I went ahead and went over to the next test at 11:30 in the hopes I could get in earlier. We only had to wait an hour, so that wasn't too awful bad. Doug wanted to come back with me and watch this test and they let him. Boy was he in for a treat! :) This was the test that they put a tube down your nose (numbing spray in the nose first) then the tube goes down your throat and to your stomach. Once the tube was in place I had to lie on my left side while the tech gave me tiny sips of water. I had to try and only swallow the water. If I coughed or swallowed before the next time she gave me more water the "timer" started over again and I had to wait 30 more seconds. I had to swallow water 12 different times before they were able to take the tube out of my nose and I was finished. I was so glad that test was over! It actually wasn't as bad as the first one I had done in Dayton. (although still not pleasant!) I told the tech this and she told me that I was actually the first person that she has tested! (there was another tech in the room with her) I was so glad that she didn't tell me this first or I would've bolted from the room! Before we left we were talking about getting a bite to eat and being done for the day and they were giving us ideas of where we could go. In conversation the tech that did my test asked where we lived and we told her 3.5 hours away; about an hour north of Dayton. We had said Versailles and she said that she had stayed at the Inn and knew exactly where that was. Small world!
Doug and I grabbed a bite to eat at the Clinic and then left to stake out where we were going to meet up with friends for dinner that night in Little Italy. We also wanted to go check out the house that was used in The Christmas Story movie. The house is open to the public to go through but only Thur-Sun; so it was closed when we were up there. :( It was still neat to find it and we did take some pictures of the outside. The infamous leg lamp shone brightly in the window! :) It was still pretty early, but we checked into our room and rested up before dinner with our friends later that evening. Dinner was great (Mama Santa's in Little Italy) and it was great to eat dinner with Jody and Jon Shy! Our waitress was a riot and gave us some Milky Ways before we left...my fave! :) Doug and I both thought we would sleep great that night because we had an early start to the day and we were exhausted...however we both didn't sleep very well at all. :(
My first appointment was at 9 am to do my lung function test. My FEV1 (forced expiratory volume) was 20%....no change from September. Which is good...but still a very low number. The tech also did the usual blood gas, which is a reading of your oxygen level and is taken from the main artery in one of your wrists. Mine was 92.5%, that number has dropped just a little. It was a little over 93% in September. Lastly I did the 6 minute walk again. I started out on room air, but once again about 1.5 minutes into the walk I had to be put on oxygen. I was on 2 liters and was able to maintain that pretty well.I walked a little further then I did in September, so I was happy about that.
The next appointment for me was with the gastro dr. to go over the results of the fun stomach test I had done the day before. He said that it was good news...and that he would clear me for surgery! The same test I had done in Dayton...this doctor in Cleveland said the results looked worse then what he thought they really were. That is why he repeated the test. He said that the results showed that I do have mild reflux and that I may need to have surgery to correct this later on after I would have transplant. He said there was a little bit of wearing away of my esophagus from the acid reflux but that it wasn't very bad at all.
Doug and I met with the social worker next and she also went ahead and cleared me for surgery!
Dr. Akindipe (ah-kin-dip-e) (I had to write down how to actually sound his name out and practice it because I had no clue!) is my pulmonologistand we met with him next. (I'll refer to him as Dr. A) He asked me how I had been feeling. I told him it just depends on the day. I told him about the pain in my upper right chest that at times moves to the other side in my back. He told me that the pain is not associated with my lungs at all and he is unsure where the pain is coming from. He said that I will not feel the pain when it comes to my lungs...which...confuses me because I have a lot of chest tightness and I know it's not my heart so would assume this would be my lungs...?? Anyway, he wants me to visit with my rheumatologist again (in the middle of trying to find a different one!) because he is sure that it probably has something to do with my Rheumatoid Arthritis (RA). He mentioned possibly having Fibromyalgia...but again told me to see a rheum. He was going to try and set me up an appt. to see one yet that day but it was already 2 pm and we had to meet with the surgeon at 3. He asked if we could stay another day and they could get me in tomorrow but we said no. That would've been 3 days there in a row and Doug had to work today...and for just 1 appointment? No. He asked if we could come back next week and we weren't going to drive 3.5 hours one way for just 1 appointment. So on to finding someone back here.
Dr. A then talked about transplant and how we were feeling as well as his thoughts on the issue. (because I asked him his thoughts on the issue) He went on to tell me that on numbers alone (my lung function result numbers) that if he were to present his colleagues with just my numbers and nothing else about me that they would list me right away. So in other words, my numbers are horrible. He went on to say "but..." since I seem to be doing ok with oxygen and only on 2 liters when sleeping and doing activity that he thinks I am "too healthy" to be listed. He went on to say that we have to keep in mind that the longer we wait the better because the outcome after transplant is so unclear. The odds are that 5 years post-transplant that only 50% of the patients are alive. I believe he said that 10 years post-transplant that 25% are alive. Given that I am 34 years old and in relatively ok health (haha) then I could buy more time and wait...in essence I could still get another year or two out of the lungs I have. He said that he would present my case in an upcoming meeting (they meet every Monday) and they would decide if they would list me. He said to be honest he would probably throw out there that I am not ready to be listed yet. I told him my only concern with that is my blood type. I am AB+, and so I have to be matched with an AB+ donor and they also have to be close to the same size as me. AB+ is of course more rare...so I could be on the list a long time waiting...but there aren't going to be a lot of AB+ people waiting on the list, so my odds of getting lungs is good....that is if there is an AB+ donor. Anyway, he wrote this down and said that was a very good point and something to definitely take into consideration when they meet.
I do understand where he is coming from, but it is so hard to digest all of this information. Knowing that my numbers are so bad...knowing that I have a rare blood type I want to get listed. I also have to find out why I am having the pain in my chest and get that fixed (if possible)...because he said if I am having that now I will have it after transplant since it has nothing to do with the lungs. I had to get another Hepatitis B shot (already had the 3 doses and thought I was done) but the blood test was negative for it so I had to get another. I surely hope that this dose takes!!
Lastly we met with one of the surgeons. We had to wait an hour before he finally came into the room...and then he only met with us for like 10-15 minutes. It was crazy! He said he looked over my records and said that he doesn't see anything that would get in the way of transplant and that he okays me for surgery. He said that they will go over my case in the next few weeks and decide if I will be listed. I asked about the numbers and how that works and he said a number of say 20 is really low and someone that will be waiting a long time for lungs. A number of 90 is someone that is really sick and is in the hospital and needs lungs ASAP. So if I were to be listed, I would have a lower number because I am still able to function pretty well. I told him about my rare blood type and said that it concerned me about not getting on the list right now. I asked him if I were to be listed but wasn't ready yet for the lungs about declining the lungs. He said that we can't decline lungs simply because I am not ready for them or I would be kicked off the list completely.
So I do not know what to think at the moment. I am getting along, but I am just scared for the fact that at any moment this roller coaster ride will go barrelling down the hill too fast for me to keep up. I've become a member of a facebook online support group of pre and post transplant lung patients and there are so many that have had transplants 10-15-20 years ago and are doing great. That gives me such great hope. I also know that there are some that do not make it either. There was a 31 year old woman that just recently passed away in the hospital waiting for her lungs to come. I am so scared to get to that point in the game. I am trying to put my trust in God, and that has been a really hard thing just because I feel like I should be the one in total control. In the grand scheme of things I know that I am not. He is. I just want to be here to grow old with Doug...to watch my kids grow up, graduate high school, get married, and have kids. That's what most people want. I am blessed to have such wonderful family and friends and I love you all!! Once I find out what the decision of the doctors at Cleveland is, I will be sure and let you all know...until then....I'm still that caterpillar inching my way up that tree...
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