Monday, July 30, 2012
The Journey has Just Begun!
Tuesday, July 3, 2012
Cleveland Visit - July 2
Very early start to our day yesterday. We decided to leave at 5 am to drive to Cleveland instead of spending the night there Sunday night. I ended up taking a nap halfway through the trip up...glad I did! :) Doug and I thought the day would turn out to be a bust with the way it started because the wait just to get my blood work done was crazy. Usually that is the quickest thing and I had to wait close to a half hour before I was called back...that's how many people were there waiting! 11 vials were taken and I was on my way, certain I would probably be back for round 2 before I left for the day. On up to chest xray and I didn't really have much of a wait there. We ran into a woman we saw there during my last visit. Doug had originally talked to her and she was going through tests for single lung and seemed kind of bitter about everything when we saw her the beginning of May. We didn't talk to her this time...saw her once more while we waited to do our lung function tests but still didn't talk to her. Maybe I should've reached out to talk to her, but I don't know something held me back.
My lung function tests actually went pretty well. I went up a percentage on my FEV1. I was at 16% in May and now at 17%. My FVC in May was 47% and now it is at 51%. Not like this is a huge difference, but I was happy to be maintaining and go up a little as opposed to dropping. A blood gas was not done on me this time (not going to complain there, because those aren't very pleasant!) but I did have to take my oxygen off to get a room air reading before I could do my 6 minute walk. Just being off of my oxygen for 5 minutes, my reading was 92%. Considering I started out at 98% on 4L of oxygen, that's quite a drop in 5 minutes...you can see why I need to be on my oxygen! :) I pushed myself on the 6 minute walk because last time I walked 570 steps and I don't want to get that number too low because I am afraid they may put me into a "status 7" which would be to temporarily take me off of the list. They would do a "status 7" if you are under/over BMI; if you are hospitalized; if you are on antibiotics; if I have to increase my prednisone. I have heard other centers taking patients off the list temporarily if they cannot do a required amount of steps in the 6 minute walk. I should ask this, but haven't. I think I'm afraid of what they will tell me, so I feel like I'm better off not knowing. :) Anyway, I was able to walk 650 steps this time around but my legs felt a lot heavier and I was more out of breath then usual. But I was happy to have "beat" my last number.
Doug and I grabbed a quick bite to eat and then off to see my infectious disease doctor. The good news with seeing her was that I am now FINALLY all up to date on my immunizations! It took forever because of my low antibodies and weakened immune system. She said she wouldn't really need to see me unless my IgG levels drop down and we need to come up with a course of treatment. She ordered blood work to test my levels and said that we will see what they are. In the meantime, I will get my levels checked once a month. She said that as long as my levels stay above 400 we are okay, but if they drop below I will have to have another infusion. I thought that was pretty good news and was confident we were actually getting somewhere and had some good news for once and maybe, just maybe I wouldn't have to worry about my antibodies and these infusions...that I was "cured". Ha, fat chance! I had an email this morning saying my results for the IgG was in...my level was 328. :( So I called and left a message for her to see when I should go get my infusion. It wasn't like the infusion was bad. It actually wasn't bad at all. It's just one more thing that I have to do that I was hoping I wouldn't have to do. When I went the beginning of May, my IgG level was 605, so to drop to 328 in just 2 months...crazy!
We had a little bit of time between seeing infectious disease and my next appointment with Dr. Budev who is part of the transplant team, so we were able to squeeze in the extra blood work that I needed to do for the IgG levels. My appointment with my coordinator was at 3 and my appointment with Dr. Budev was at 3:30. We got to the floor at 2:15 and while we waited, we looked at a quilt that was hanging. I had seen the quilt there before but never really looked at it. Since this is the transplant floor, each one of the squares represented someone that has had a transplant. Not just lung transplants, but also liver, kidney, cornea, etc. It looked like each person made up their own square. It was neat to see the different squares. It reminded me of Cameron and the quilt square that was done for him. At the time his was made, there were 37 quilts, each square had a child born with a heart defect. It had their name, heart condition, birth date and if the child had died, the day they died. It was very touching to be able to see this on a quilt and to help raise awareness about heart defects.
I found a neat double lung transplant square on the quilt hanging in the waiting area. I took a picture with my cell phone. (See below...sorry for the quality, my cell phone does not take good pictures, plus my hand is pretty shaky to begin with!)
We got back to see my coordinator about 2:30 and Dr. Budev came in shortly after that. Listening to my lungs she said I sounded "pretty good" (considering), she just heard a few crackles in the bottom left part of my lungs, but otherwise I sounded pretty clear. She told me that my chest xray looked pretty good as well. Nothing really "new" to report...no new masses. Just the regular hyperinflation that's always there. Looking over my lung function numbers and the 6 minute walk details she said that it was likely that my position on the list probably won't change, which is fine with me. There is only 1 other person on the list (in Cleveland) that is AB+ like I am, so it is not going to make much of a difference anyway from that standpoint. Dr. Budev went on to tell me that it will be harder to find a donor for me because of a few things. For one, my rare blood type of course. Not only does my donor have to have AB+ blood, but they also have to be very close in size to me. The other thing she told me was that I am "sensitized". She explained that when I was pregnant and gave birth that the cord and placenta gives off antigens from the baby and those cells "take up residence" in my body. These antigens then have caused my immune system to produce antibodies against it. (I think I have that right...haha...confusing, I know!) So with having 3 kids, and my immune system the way that it is (really screwed up!) what she is saying is they also have to find someone with an antibody match to mine. Sooooo....it may be awhile before a donor is found for me! :( But I also look at it as a good sign because of the precautions and extras needed, I will get the best set of lungs possible! :) Dr. Budev said that she is glad they got me on the list when we did. So I am sure I still have quite the wait ahead of me yet. Only time will tell; for the time being I feel pretty decent considering.
Other good news though is we spoke with a research assistant after we spoke with Dr. Budev. Cleveland Clinic is doing a study of "Direct Bronchial Artery Revascularization (BAR) in Transplanted Lungs". They are doing this for double lung patients and single lung patients. I am actually quite excited about this. The study was started by a doctor in Denmark, Dr. Gosta Pettersson and he did this study on 100 patients from 1992 to 1998 in Copenhagen, Denmark with excellent results.
(The following info was taken directly from the paperwork we got explaining everything)
What is Bronchial Artery Revascularization? (or BAR)
The lungs have two blood supplies. The first is from the large pulmonary arteries that carry blood low in oxygen returning from the body to the lungs to pick up oxygen. The second blood supply is from the bronchial arteries. These are small arteries coming directly from the aorta to the bronchi (breathing tubes) and they carry oxygen to lung tissue. Today lung transplantation is done without reconnecting this second blood supply during the operation. Reconnecting the bronchial arteries by BAR can be done as part of a single or double lung transplant. Although BAR has been done in a small number of patients in the United States and Europe, most hospitals do not do it because this is a hard surgery to do and transplant surgeons have not been sure it is necessary. The person in the world with the most experience with BAR is Gosta Pettersson, M.D. (who is now at Cleveland Clinic) who performed over 100 BAR procedures in Copenhagen, Denmark from 1992 to 1998. Watching the Copenhagen patients for many years has made us believe that BAR might improve survival and how people do after a lung transplant. Studies have shown that if the bronchial artery blood supply is restored it may be good for the lungs by improving airway healing and helping the lungs fight and heal infections, rejections, and other injuries to the lungs, and prevent early permanent loss of function. However, until now, BAR has not been performed at Cleveland Clinic.
So this is excellent news I think! While I did go ahead and sign that I would like to take part in the study, it is still uncertain I will have my lungs with BAR or not. It will depend on the donor for one. When harvesting the lungs from the donor, the bronchial supply will need to be intact and unharmed. If they find me a donor that they cannot use the bronchial supply I will still get the double lung transplant without the BAR. Currently, without doing the BAR, the standard statistic of survival rate of patients who have a lung transplant are 50% after 5 years are still alive. The statistics for Dr. Pettersson is 85% after 5 years are still alive. Quite a difference! This is a very new procedure and Cleveland is currently the only hospital in the US that is doing this procedure. The risks of the surgery are no different from a regular lung transplant. Of course, there are other lung transplant patients that are 10-15 years post transplant and they are doing "fine". I use that term lightly because even though they have their lungs, I'm not sure they (or we) will ever really be 100% fine. I was told that I will at some point go into rejection after transplant, it's just a matter of when. This does scare me some, but my current health situation scares me more. This is a reason why the doctors have waited to list me because once I do have the transplant I feel as though another clock starts ticking as to when the rejection will happen. I of course plan on living it up to the best of my ability and do the things I want to do and when I want to do them. Life is just way too short as it is anyway. I can't really live it up right now because of my oxygen and very low energy. I'm really hoping that I can get my transplant with BAR and that it will make a world of a difference in the medical world as far as lung transplant goes. I don't really have anything to lose, but have something to gain here...and I would be helping with medical advancement for future generations. How cool is that?
We got out of the appointment and down to get our car at 3:30, which was the time we were supposed to meet the doctor! We were shocked to get out of there so early!!! Doug and I were pretty excited because we knew we would be able to go to Alexa's 7:30 ballgame. (I haven't been able to go to any of her games this season just because of the heat and I haven't been out of the house since the end of May.) We actually got pulled over on 75...(long story...wasn't speeding, but written warning did say speed as the warning, but the trooper never said how fast we were going even when Doug asked)...stopped to get gas and food and still made it just in time for Alexa's game! I was happy to see her be a catcher, play 1st base, and also pitch for an inning. She was excellent at all 3! I only saw 2 of her at bats...first one was awesome, but it was a fly ball and someone caught it. Second one she made it to base and eventually scored a run. Cameron played in a tournament on Saturday and his team came in 2nd! He got a medal for being in the tournament, plus coming in 2nd they got a trophy! He was so excited! I only made it to one of his earlier games, so being his first year playing, it killed me not to be there to watch him. :( But he wants to play next year (so he says) so hopefully I will be able to watch him then! Austin is gearing up for cross country so he can be in shape for wrestling, which he can't wait for. He just went to Jordan camp for wrestling last week and had a great time and learned a lot while he was there.
Whew! This was a long post! :) If you are still reading, thanks! haha!! :) God is still working to perfect my wings...until then, my cocoon sits in the palm of His hands protecting me until I'm ready to emerge. Just to let Him know, I'm totally ready whenever He is...I'm ready to get this show on the road! :) Hugs and love to everyone!
My lung function tests actually went pretty well. I went up a percentage on my FEV1. I was at 16% in May and now at 17%. My FVC in May was 47% and now it is at 51%. Not like this is a huge difference, but I was happy to be maintaining and go up a little as opposed to dropping. A blood gas was not done on me this time (not going to complain there, because those aren't very pleasant!) but I did have to take my oxygen off to get a room air reading before I could do my 6 minute walk. Just being off of my oxygen for 5 minutes, my reading was 92%. Considering I started out at 98% on 4L of oxygen, that's quite a drop in 5 minutes...you can see why I need to be on my oxygen! :) I pushed myself on the 6 minute walk because last time I walked 570 steps and I don't want to get that number too low because I am afraid they may put me into a "status 7" which would be to temporarily take me off of the list. They would do a "status 7" if you are under/over BMI; if you are hospitalized; if you are on antibiotics; if I have to increase my prednisone. I have heard other centers taking patients off the list temporarily if they cannot do a required amount of steps in the 6 minute walk. I should ask this, but haven't. I think I'm afraid of what they will tell me, so I feel like I'm better off not knowing. :) Anyway, I was able to walk 650 steps this time around but my legs felt a lot heavier and I was more out of breath then usual. But I was happy to have "beat" my last number.
Doug and I grabbed a quick bite to eat and then off to see my infectious disease doctor. The good news with seeing her was that I am now FINALLY all up to date on my immunizations! It took forever because of my low antibodies and weakened immune system. She said she wouldn't really need to see me unless my IgG levels drop down and we need to come up with a course of treatment. She ordered blood work to test my levels and said that we will see what they are. In the meantime, I will get my levels checked once a month. She said that as long as my levels stay above 400 we are okay, but if they drop below I will have to have another infusion. I thought that was pretty good news and was confident we were actually getting somewhere and had some good news for once and maybe, just maybe I wouldn't have to worry about my antibodies and these infusions...that I was "cured". Ha, fat chance! I had an email this morning saying my results for the IgG was in...my level was 328. :( So I called and left a message for her to see when I should go get my infusion. It wasn't like the infusion was bad. It actually wasn't bad at all. It's just one more thing that I have to do that I was hoping I wouldn't have to do. When I went the beginning of May, my IgG level was 605, so to drop to 328 in just 2 months...crazy!
We had a little bit of time between seeing infectious disease and my next appointment with Dr. Budev who is part of the transplant team, so we were able to squeeze in the extra blood work that I needed to do for the IgG levels. My appointment with my coordinator was at 3 and my appointment with Dr. Budev was at 3:30. We got to the floor at 2:15 and while we waited, we looked at a quilt that was hanging. I had seen the quilt there before but never really looked at it. Since this is the transplant floor, each one of the squares represented someone that has had a transplant. Not just lung transplants, but also liver, kidney, cornea, etc. It looked like each person made up their own square. It was neat to see the different squares. It reminded me of Cameron and the quilt square that was done for him. At the time his was made, there were 37 quilts, each square had a child born with a heart defect. It had their name, heart condition, birth date and if the child had died, the day they died. It was very touching to be able to see this on a quilt and to help raise awareness about heart defects.
I found a neat double lung transplant square on the quilt hanging in the waiting area. I took a picture with my cell phone. (See below...sorry for the quality, my cell phone does not take good pictures, plus my hand is pretty shaky to begin with!)
We got back to see my coordinator about 2:30 and Dr. Budev came in shortly after that. Listening to my lungs she said I sounded "pretty good" (considering), she just heard a few crackles in the bottom left part of my lungs, but otherwise I sounded pretty clear. She told me that my chest xray looked pretty good as well. Nothing really "new" to report...no new masses. Just the regular hyperinflation that's always there. Looking over my lung function numbers and the 6 minute walk details she said that it was likely that my position on the list probably won't change, which is fine with me. There is only 1 other person on the list (in Cleveland) that is AB+ like I am, so it is not going to make much of a difference anyway from that standpoint. Dr. Budev went on to tell me that it will be harder to find a donor for me because of a few things. For one, my rare blood type of course. Not only does my donor have to have AB+ blood, but they also have to be very close in size to me. The other thing she told me was that I am "sensitized". She explained that when I was pregnant and gave birth that the cord and placenta gives off antigens from the baby and those cells "take up residence" in my body. These antigens then have caused my immune system to produce antibodies against it. (I think I have that right...haha...confusing, I know!) So with having 3 kids, and my immune system the way that it is (really screwed up!) what she is saying is they also have to find someone with an antibody match to mine. Sooooo....it may be awhile before a donor is found for me! :( But I also look at it as a good sign because of the precautions and extras needed, I will get the best set of lungs possible! :) Dr. Budev said that she is glad they got me on the list when we did. So I am sure I still have quite the wait ahead of me yet. Only time will tell; for the time being I feel pretty decent considering.
Other good news though is we spoke with a research assistant after we spoke with Dr. Budev. Cleveland Clinic is doing a study of "Direct Bronchial Artery Revascularization (BAR) in Transplanted Lungs". They are doing this for double lung patients and single lung patients. I am actually quite excited about this. The study was started by a doctor in Denmark, Dr. Gosta Pettersson and he did this study on 100 patients from 1992 to 1998 in Copenhagen, Denmark with excellent results.
(The following info was taken directly from the paperwork we got explaining everything)
What is Bronchial Artery Revascularization? (or BAR)
The lungs have two blood supplies. The first is from the large pulmonary arteries that carry blood low in oxygen returning from the body to the lungs to pick up oxygen. The second blood supply is from the bronchial arteries. These are small arteries coming directly from the aorta to the bronchi (breathing tubes) and they carry oxygen to lung tissue. Today lung transplantation is done without reconnecting this second blood supply during the operation. Reconnecting the bronchial arteries by BAR can be done as part of a single or double lung transplant. Although BAR has been done in a small number of patients in the United States and Europe, most hospitals do not do it because this is a hard surgery to do and transplant surgeons have not been sure it is necessary. The person in the world with the most experience with BAR is Gosta Pettersson, M.D. (who is now at Cleveland Clinic) who performed over 100 BAR procedures in Copenhagen, Denmark from 1992 to 1998. Watching the Copenhagen patients for many years has made us believe that BAR might improve survival and how people do after a lung transplant. Studies have shown that if the bronchial artery blood supply is restored it may be good for the lungs by improving airway healing and helping the lungs fight and heal infections, rejections, and other injuries to the lungs, and prevent early permanent loss of function. However, until now, BAR has not been performed at Cleveland Clinic.
So this is excellent news I think! While I did go ahead and sign that I would like to take part in the study, it is still uncertain I will have my lungs with BAR or not. It will depend on the donor for one. When harvesting the lungs from the donor, the bronchial supply will need to be intact and unharmed. If they find me a donor that they cannot use the bronchial supply I will still get the double lung transplant without the BAR. Currently, without doing the BAR, the standard statistic of survival rate of patients who have a lung transplant are 50% after 5 years are still alive. The statistics for Dr. Pettersson is 85% after 5 years are still alive. Quite a difference! This is a very new procedure and Cleveland is currently the only hospital in the US that is doing this procedure. The risks of the surgery are no different from a regular lung transplant. Of course, there are other lung transplant patients that are 10-15 years post transplant and they are doing "fine". I use that term lightly because even though they have their lungs, I'm not sure they (or we) will ever really be 100% fine. I was told that I will at some point go into rejection after transplant, it's just a matter of when. This does scare me some, but my current health situation scares me more. This is a reason why the doctors have waited to list me because once I do have the transplant I feel as though another clock starts ticking as to when the rejection will happen. I of course plan on living it up to the best of my ability and do the things I want to do and when I want to do them. Life is just way too short as it is anyway. I can't really live it up right now because of my oxygen and very low energy. I'm really hoping that I can get my transplant with BAR and that it will make a world of a difference in the medical world as far as lung transplant goes. I don't really have anything to lose, but have something to gain here...and I would be helping with medical advancement for future generations. How cool is that?
We got out of the appointment and down to get our car at 3:30, which was the time we were supposed to meet the doctor! We were shocked to get out of there so early!!! Doug and I were pretty excited because we knew we would be able to go to Alexa's 7:30 ballgame. (I haven't been able to go to any of her games this season just because of the heat and I haven't been out of the house since the end of May.) We actually got pulled over on 75...(long story...wasn't speeding, but written warning did say speed as the warning, but the trooper never said how fast we were going even when Doug asked)...stopped to get gas and food and still made it just in time for Alexa's game! I was happy to see her be a catcher, play 1st base, and also pitch for an inning. She was excellent at all 3! I only saw 2 of her at bats...first one was awesome, but it was a fly ball and someone caught it. Second one she made it to base and eventually scored a run. Cameron played in a tournament on Saturday and his team came in 2nd! He got a medal for being in the tournament, plus coming in 2nd they got a trophy! He was so excited! I only made it to one of his earlier games, so being his first year playing, it killed me not to be there to watch him. :( But he wants to play next year (so he says) so hopefully I will be able to watch him then! Austin is gearing up for cross country so he can be in shape for wrestling, which he can't wait for. He just went to Jordan camp for wrestling last week and had a great time and learned a lot while he was there.
Whew! This was a long post! :) If you are still reading, thanks! haha!! :) God is still working to perfect my wings...until then, my cocoon sits in the palm of His hands protecting me until I'm ready to emerge. Just to let Him know, I'm totally ready whenever He is...I'm ready to get this show on the road! :) Hugs and love to everyone!
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