Cleveland Trip 2/15

I've already posted a small update of my trip on Facebook, but thought I would go into a little more detail here on my blog for those of you that want to read it and get caught up to speed. There wasn't a whole lot more to my trip then what I had on Facebook, and who knows how long this blog post will be as you know I can tend to get winded with them. :)

Doug and I left really early Wednesday morning (too early for my liking) for Cleveland. I was able to sleep a little bit on the way. We got there about 8:45 and most of the days tests were in one building, which was the Crile Building. I had my usual blood work done first (10 out of the right...I didn't even feel the needle go in, that's how good this woman was!...and 1 out of the left). We moved on to my chest xray next, and then the last tests being the lung function and 6 minute walk.

I had some fun with the pulmonary guy doing the lung function test on me. I also have to have blood gas drawn (they draw blood from the main artery in your wrist to check the exact amount of oxygen in your blood...and it also checks the carbon dioxide) each time. This test is not really fun because of the way they insert the needle. So he's getting set up for it and asks me if I have any problems with band-aids. I told him, "No, I'm not scared of them." And then kind of smiled. He smiled back and said that he meant if I was allergic. I laughed and said that was my sorry attempt at a joke. He did laugh and then I did tell him no joke telling while he was doing the blood gas draw. I got 2 lovely parting gifts...another chamber for my inhalers (to add to my already dozen that I already have) and also a nasal cannula! Lucky me! He was fun to joke with though...gotta have some humor, right? I totally bombed the 6 minute walk walking a lot less then the last time. In November I walked 790 feet and this time only 665. I again was put on 2L of O2 soon after starting.

I saw Dr. Lane this time (it's usually between him or Dr. Akindipe) but I always see my lovely coordinator, Suzanne first. I really like her. She is very sweet, soft spoken, can joke around but be serious at the same time. I hate it when people are serious all the time...life is no fun that way! ;) So she goes over my meds again to make sure all is current...asks me about other things going on with what I can and can't do. She then just kind of stopped what she was doing and looked right at me and started talking. They way she did it and the way that she talked made me was almost like God was using her to talk to me. I know it sounds really weird...and those of you that may not believe in that sort of thing are saying, yeah, whatever. But the way she talked to me and the manner in which she did it, I really feel God was using her. She told me..."Kara, I know that you are hurting. I know that it sucks. I know that you want everything to just go away and feel better and you can go on living your life. I get that....but you need to keep what God gave you for as long as you can. You need to do it for your little ones. They need you. I know that it is hard, but transplant is not a cure. You are only trading one set of problems for another. 100% of transplant patients have chronic rejection at one point or another. It will happen to you too. So live with what God gave you for as long as you can." So that's not a direct quote from her, but pretty darn close. She even had tears in her eyes as she was talking. She said it ever so sweetly and it made me cry as well...and like I said, it felt like God was using her to get through to me. To let me know that even though I want to feel better soooooo badly...that it's just not time for me yet.

Dr. Lane came in to see me and said my chest xray looked good. He said everything else looked pretty good as well. My numbers have all pretty much stayed the same over the course of the last few visits, so they feel like we still have more time on these lungs to go. My FEV1 is still at 20%, and that isn't the greatest, but acceptable still to them. My blood gas numbers did change a little and I was told the numbers they look at for that when they decide to list. The oxygen in my blood is 90%, down 2% from November. The lower that goes, the more oxygen I need to be on. The carbon dioxide in my blood is 46.50. It was 45.80 in November. You want a low number for this...so the higher that goes, the more likely I will get on the list. I was told to try and get some more exercise to see if that will help me improve. I had stopped going to pulmonary rehab because it's an hours drive there and another hour back...so gas...and then I also have to pay even if I can't make a session and I was starting to miss a lot because of being sick. So I'm going to do some things at home...and Doug will get after me if I don't...so I will! :) And hopefully maybe I can start to build back up and feel better that way. Dr. Lane told me that he doesn't need to see me back until May unless something else comes up. I am current on all of the required tests, so if I were to get worse and would need to get listed then they could get me on the list quickly.

Doug and I had almost 2 hours to kill before my last appointment of the day, which was in the main building. We decided to make our way over there and get a bite to eat. It took me forever to get to that food court...yowsers! I should've had him get me a wheelchair. We sat there awhile and I did recover, but then we had to make our way to my next appointment and that was another hefty walk. We were still pretty early and unfortunately they were on time with things, so we didn't get in any earlier.

My last appointment was with Dr. Koval with infectious disease. I had seen her while I was in the hospital the last time, but don't recall much of the conversation I had with her. I think the main concern at the time was getting rid of the pneumonia and of course all the trapped air in my neck and face. One of the reasons I was there to see her was to get a big booster for the pneumonia shot. Typically when a "normal person" gets the pneumonia shot, it should last them 5 years. Well, I've had the pneumonia shot probably about 5 times now and it still has not taken all the way. They check my blood each time I go up and there are many "strands" that they check and all strands have to come through....and about half of mine still have not come through. So I am hoping that this booster they gave me on Wednesday will have done the trick. If it didn't, then I don't know what they will do next. I also haven't been able to "pass" the Hep B series of vaccines. A normal person has a series of 3 shots and is usually protected. I've had the series, but mine has still not taken...I've had some extra doses too with no luck yet.

The other concern that they have for me with infectious disease is my low antibody level. Antibodies are produced by the body's immune system to help fight off infections. My body is apparently not producing antibodies anymore. My numbers have dropped over the course of the last several months. I think back in June or September my number was in the 500's, then in November it dropped to the 400's and then when I was in the hospital it was 367. Normal range for their antibody test is 717-1200. She was hoping that my very low number of 367 was because I was so sick, so she wanted to run another blood test to check my levels and then we would go from there. If my numbers were still low, she told me that I would likely have to have an IVIG infusion that would put antibodies back into my system. It takes 2-4 hours to do and I would have to have it done at the hospital. She told me she would get back with me as soon as she knew the results. When I woke up Thursday morning, there was an email in my inbox from MyChart (where all my test info goes from Cleveland) saying I had a test result ready to view. My level was 366! So it had gone down 1 point instead of going up at all from being sick. That was a little discouraging, but it is what it is. Dr. Koval made note that she will speak with Dr. Lane in regards to what they want to do next and she will get back with me. I am sure I will need to do the IVIG infusion...and I'm not quite sure how I feel about that!

Doug and I just want to say again...THANK YOU!!!! To everyone who has helped in one way or another. We are truly blessed to have so many people that care about me...and us...and who have given of themselves in one way or another. Cards, thoughts, prayers, meals, help with our kids, help with fundraisers going on, donations....everything from everyone has been amazing. Words cannot express our gratitude during this time in our lives. You are all a blessing to us!!!!!

I will get my new wings...it's just a matter of God's time, not my time. Like a good friend has told me; "He's just working on them to make them perfect and right, just for you!" :) So I guess I must remain as the caterpillar for now, but will keep my spot on the tree just in case my time is near.