All kinds of Craziness

Not sure why I titled my post this way. Guess it's just the way that I am feeling at this particular moment. I think this is just the beginning of all of the craziness.

It's been nuts in the fact that every time before I would have to be seen at Cleveland for appointments that I would somehow end up in the ER or hospitalized at least a week before my trip. Every 3 months. And each time for an infection. And each time about a week before the trip. Well, I had made a resolution to myself that my May 7 trip would be different and I would not go to the hospital before then. I did hold true to that although I think I really screwed up. I started to get a bit of a cough the Saturday before. Actually, the week of Cameron's birthday (April 26th) I was feeling quite yucky but nothing had really surfaced until about May 5 when I started to cough just a little. I felt I could hold off until Monday and be seen at Cleveland, get an antibiotic and everything would be hunky dory. If I would happen to get bad before going I would certainly go the the ER. But I held solid and things weren't too bad so I ended up waiting it out and making it to Cleveland without being seen at another ER before the trip! Success!!! Or was it?? I got the antibiotic for sure, but no up in my prednisone. On the trip home that evening I felt "decent" because Doug had pushed me in a wheelchair and I was on continuous oxygen all day but I was coughing a lot more on the return trip home. Tuesday I was miserable. It seems I just went downhill from there. My chest got crackly and I kept thinking the antibiotics would kick it. Nope. I almost went to the ER that weekend but it seems like when I do go they (no matter where I go) never know what to do for me but breathing treatments (which I do at home) and chest xray to make sure it's nothing major. So I didn't go. I waited until Monday and went to see my family doctor and got a steroid shot to which later that day I did start to feel better. She increased my steroid dosage and I figured I was on the up and up. Wrong again.

See, all I wanted...was to be well enough for this coming week because my niece graduates from high school and not only did I want to see her get her diploma, but my parents are coming in, as is my brother, his wife, and my Aunt Sue from Chicago. It's been a year since I've seen my parents; almost 3 (I think?) since I've seen my brother and Kim; and 4-5 (?) since I've seen my Aunt Sue. We were going to have a great week of catching up and good times. So now here I am. This last Thursday morning I didn't feel too horrible, but the afternoon brought different feelings and it was much harder for me to breathe. I took a vicodin and tried to rest and it helped some but I woke up at 3 am and again at 6 feeling the same and knew something was wrong so I got in touch with my family doctor who called ahead to Wayne to give them a heads up and get some tests started. My chest xray was fine (as usual) no pneumonia though which was good. My CO2 in my blood gas reading was at 61 though, which is very high and meant that my air exchange is very very poor. I was transferred to Good Sam and have been here since. I was given the choice to go to Good Sam or straight to Cleveland. I almost chose Cleveland but thought that maybe it was something I could kick easily and be close to home and be done by mid-week when everyone would start showing up for Ally's graduation.

The plan was to do IV steroids and antibiotics and hope to bring the CO2 level down by opening up my airways, which for my lung disease is pretty much impossible, but we were going to give it the old college try. So that's been going on since I've been here...every 6 hours...nebulizer treatments every 4 hours...fun times. I'm not getting much sleep which makes for even funner times! :) Doug came down yesterday afternoon and spent most of the evening with me while the kids all enjoyed a night at the Dayton Dragon's game with Janelle Bohman (thanks, Janelle!) :) and her whole crew. I felt badly because I slept some while he was here. Couldn't sleep most of the day but he comes and I sleep. :) So then the nurse last night tells me that my CO2 was down to 33 and I got really excited...but this was from regular bloodwork and not a blood gas which gives you the most accurate reading. Got the blood gas this morning and my CO2 is 56. So it went down some, which is good but it is still high. Dr. Malik (my local pulmonologist) said that I have made a little bit of progress but not much and it is very likely that I will be transferred to Cleveland tomorrow.

Sooooooo......while I do look forward to moving forward and feeling better I also can't help but feel a bit bummed about the timing. This week of all weeks. :( Doug told me to be careful what I wish for. When we were coming back from Cleveland May 7 I said....wouldn't it be ironic if they list me and I actually get the call while everyone is home during Ally's graduation? I doubt I will get a call that quickly (although stranger things have happened)...but uhm, yes, definitely ironic. All kinds of craziness...wouldn't you say??

Doug and the kids are on their way now to see me now. I haven't seen them since Friday morning and didn't give them proper goodbyes because I didn't think I would be admitted to the hospital. So I'm missing them terribly. I'll get to see them for a few hours and they have this week and 2 days next week left of school then they are done for the summer!  So I guess I will close for now. I'm leaning on the strength of God within my heart to help me through this really rough patch. So far so good..I had a bit of a test of that this morning. : / I am definitely scared, I will not kid you there. But I am bound and determined to fight hard and make it through. I also have to give a big thanks to Pastor Wheeler for stopping by yesterday and seeing me and saying a beautiful prayer before he left. Made me tear up...and also to know that he had some special prayers said today at church also. I found comfort knowing I have a lot of people that are here for me and for my family.

I'm thinking I'm now at that cocoon stage after all...just waiting for God's Glory and the perfect timing for me to emerge with my new wings. :) I will try to keep my blog updated as best I can as well as my facebook....or Doug will try...(haha...we'll see...) ;) Love to you all!

Cleveland Visit 5/7/12

I guess it would be safe to say that there was bad news and good news from this last visit to Cleveland. Doug and I did leave Sunday afternoon to spend the night up there even though my tests and appointments didn't begin until 9:30. I find this to be the best because I was less exhausted yesterday. Last time (in February) we drove up that day, did the appointments and drove home and I was feeling horribly then. Another thing that really helped this time was that I gave in to having Doug escort me around in a wheelchair. I kept putting that off as long as possible...but over the last few weeks I have just had no energy and have been more short of breath then usual so he had the pleasure of wheeling me around. :) I also used Cleveland's O2, which was continuous rather then the burst O2 that I had been using when I go up there. I think that made a big difference as well. Besides this nasty cold/cough I've got started I actually felt pretty decent.

Bloodwork was first on my to-do list and this time only 14 vials were taken out of my arm! :) I had my chest xray next and when I came out from that, Doug was talking to a woman in a wheelchair that also had oxygen on. We were in the actual waiting are to have our xrays...he's never gone back with me until this time because I was in a wheelchair this time. Anyway, this woman was older and she said she was going through testing to get a single lung. She asked about me and I said double. She said that she was "too old" to get a double. Then there was another woman on the other side (waiting to go for her xray) and she peeked around to ask if we were both waiting to get listed for lungs. We both said yes and she said she was 7 years post double lung transplant! She said she is doing well, which was very promising. I asked the women what their diagnosis's were. The older woman said pulmonary fibrosis and the other woman said Bronchiolitis Obliterans! I lit up and told her that was me!! She said she has rheumatoid arthritis and that they think her  B.O. was caused by the RA. Again, I said that was me!!! She is 57 now and said it was the best thing she did. She said that her B.O. came upon her just all of a sudden and she declined pretty rapidly. I told her mine came on pretty quickly too. Anyway, we exchanged information and I hope to talk to her more and get more information from her!

So the bad news is that my lung function numbers all went down. Like I had mentioned in a previous post, the main number they look at is my FEV1-Forced Expiratory Volume in One Second - The amount of air which can be forcibly exhaled from the lungs in the first second of a forced exhalation. A normal person is close to 100%. My number for the past few visits has been around 20%. I think when I was tested in the very beginning of all of this (back in Sept 2010) this number was 36%. Anyway, that number dropped to 16% this time. Funny thing was that I thought I did pretty well on the test. I was sadly mistaken when I saw the results. :( Also looked at is the FVC-Forced Vital Capacity - The amount of air which can be forcibly exhaled from the lungs after taking the deepest breath possible. This number back in February was 59% and yesterday it dropped to 47%. My arterial blood gas was lower this time too. Blood is taken from one of the main arteries in your wrist and it is the most accurate reading of how much oxygen is in your blood. In February mine was 90.40% and this time it was 89.30%. Normal people should be as closet to 100% as possible...when you hit 88% or lower is when you need the supplemental oxygen. I had been on 3L at the clinic up until this point and when I got to the lung function lab, I took my oxygen off and did the breathing tests before she did the blood draw to make sure she was getting the reading on room air.

I did my 6 minute walk and I actually thought I was doing really well with it. But, I was wrong again. In February, I was able to walk 665 feet (which was down from the visit before) bu this time I was down to 570 feet in 6 minutes. (No running marathons in my near future!) ;) In February they started my walk on room air and quickly I had to be put on 2L...this time though she started me at 4L and that is where I stayed for the duration of the walk.

Got a quick bite for lunch and then headed to my next appointment which was with the rheumatologist.  He didn't really do a whole lot...just assessed me. I told him I don't have a rheum dr. back here that I like very well and wondered if I could see him, or if he had any recommendations for me back here. He said he would check into it for me. So we'll see where that takes me. For now, I guess I will see them up there since I am going every few months.

Next appointment was with my transplant physician (Dr. Lane) and my coordinator, Suzanne. Love her! She gave me a big hug when she came in. She got all of my initial info together and ready for Dr. Lane. I told her about being more short of breath, high pulse, low O2....especially over the last few weeks. Also mentioned my lovely cough, phlegm production and the possible need for an antibiotic. Got another hug from her when she left the room and Dr. Lane took over saying that since my numbers have all dropped that he thinks it is time to present my case again to the board. So that's the good news! They are finally going to re-present me! He said that if I do get listed I will likely be low on the list. They do lung allocation scores and take a lot of different things into consideration when coming up with a number. I am still functioning somewhat ok, so I would likely be low on the list. This number can always go up if I would become sicker. He said as far as a wait, obviously, you just don't know...but could be a few months, could be a year. I told him my main concern with getting listed and the waiting part was because I was AB+ and thought that would work against me since it is the more rare blood type. But he said being low on the list and having the rare blood type could actually be an advantage for me. He said those higher on the list with more universal blood types can't get my AB+ lungs, so it would "trickle" down the list to me. So my wait might not be long at all. He prescribed me a 7 day antibiotic for this lovely cold I started at the end of the week last week. Doug just now went to pick it up for me...I have been coughing so much the muscles in my stomach hurt! :( I hope that the antibiotic kicks in real soon because I am afraid I may have to go to the ER if it doesn't in the next day or 2. I was about ready to go last night because I couldn't stop coughing and then my pulse was going high. I had a heck of a time.

My last appointment for the day was with Dr. Koval in infectious disease. This is to check my IGg and to see if I need anymore IVIG infusions. It just so happens that when my bloodwork was done earlier that they didn't do the test for my IGg so they had to add it in. I was supposed to have results this morning, but I am still waiting to hear. She told me that if it is under 400 they will have to do another infusion. I will get my blood checked every 4 weeks to see what my levels are. If they are above 400 she said that is fine. But if they are under I will have to keep getting the infusions. I also found out that my Hep B series finally took! Only after 5 tries!! However, I also found out that it may have only took because of the IVIG infusion that I had. Since the infusion is made up of over 100 different people's antibodies it is very likely that my positive result came from one of them. :( But it is positive nonetheless and we will just see where that will take me. I still don't know if the pneumonia shot took yet or not. I won't know that until Friday.

That's pretty much my day in a nutshell. We tried to leave Cleveland about 4:50, and what should be about a 10 minute drive to get on the interstate took us almost an hour because of all of the traffic. We drove through some really nasty weather and had to drive no more then 45 mph on the interstate....people were driving with their hazards on and a lot of people were pulling over. It was crazy. We stopped at O'Charley's to get a bite to eat and let some of the storms pass. The food was very yummy!! We started back out on the road and Doug ended up pulling over to let me drive because he was so tired. He didn't get much sleep the night before in the hotel. Usually I am so beat from the day, but since he pushed me around in the wheelchair and I was on continuous air rather then the bursts of air I drove the rest of the way home. I was glad he was able to catch some z's. :)

Now it's just another waiting game. I will wait for my IGg results to see if I need another infusion. I will also be waiting to get a phone call to see if I am listed or not. Dr. Lane told me it would not be this coming Monday, but hopefully the Monday after that. Hopefully before month's end I will know if I am on the list or not.

Kara the Caterpillar may be weaving that cocoon here soon after all! :) Thank you everyone once again for all of your love and support! :)

Cameron

I should've posted this earlier with my other post....and since I won't be around much tomorrow, I figured I would post it now. As I had said in my post earlier, 9 years ago tomorrow we almost lost Cameron due to his undetected heart defects. Everything was very surreal that day, especially when the ER doctor told me he probably wouldn't live. When Dayton Children's came to transport him via Careflight, one of the nurses stopped in front of me and told the others that they were stopping so mom could give him a kiss. The only spot they could put an IV in was the top of his head and he was on this huge bed hooked up to so many things...I kissed his forehead and whispered, "Godspeed little man, I love you, stay strong!" I then had an overwhelming sense that he was going to be ok. Cameron is named after his great-grandfather whom passed away 3 years prior. (Ironically enough, he also had heart issues.) I really felt like my grandfather was watching out for Cameron from that moment on.

Cameron had his surgery on May 8, 2003 at Children's in Cincinnati. Everyone there was wonderful. Mother's Day for me was spent with him in the step down unit, but I wasn't complaining one bit. We were also able to run home to see Austin and Alexa on that Mother's Day too. The nurses made me a card that was "from" Cameron, which I still have to this day. :)

A few weeks after Cameron's surgery, his incision that reached from under his left arm to the middle of his back became infected. We took him to Dayton Children's and he had to spend another 7 days in the hospital. I tried staying the night, but I just wasn't getting any sleep with all of the interruptions and I also felt neglectful of Austin and Alexa at home. I decided to spend my days at the hospital, but come home at night to be with the other 2. I felt guilty for leaving Cameron and one day as I was leaving the hospital I popped in the newest Dixie Chicks CD that I had just bought but hadn't had a chance to listen to yet. The title of one of the songs was "Godspeed (Sweet Dreams)". I immediately went right to that song and just cried...I felt a little better...knowing that my grandpa was still up there watching out for my little man.

I consider this "Cameron's song" and used to sing it to him all of the time when he was little. It would always quiet him and he would always listen intently. Here's a link to a YouTube of the song...take a listen, it's very sweet! :)

Answered Prayers

I should start out that no, I do not have any answered prayers regarding my lungs and Cleveland. Not yet anyway. Hopefully I will get some info on Monday and I will update more then. As I was thinking about "answered prayers" I did realize that I do indeed have a lot to be thankful for regardless of my health situation.

I have friends and family that love me unconditionally. Definite answered prayer. This love has been shown many times over the last few years. People bringing us meals, taking our kids places, just lending a hand in general. I always feel like such a downer most days because I often feel cruddy. Okay, I always feel cruddy. I try to grin and bear it but it is definitely a hard thing to do when you feel like a freight train is parked on your chest and you get out of breath just sitting and talking. As most of you know, talking is pretty much my favorite past time. :)

I have Doug's work friends who have constantly been there for us and who just had an amazing benefit for us to help raise money for out of pocket medical expenses. This money will help so much when the time comes for transplant. Katy, Cherolet, and Jodi are the main women who put this benefit on and put in a lot of work to make it happen and Doug and I can't thank them enough! We can't thank everyone that came enough either...we feel truly blessed to have so many caring people in our lives! The entire Darke County Sheriff's Office has been wonderful; helping us out in so many ways! The one thing I am thankful for is the ease of Doug being able to take off in a hurry if I need him. Definite answered prayer that these wonderful people are in our lives.

Both the school and Bella Baby Photography have also been very wonderful to me as well. I miss going to work every day and seeing the kids at school...and I totally miss photographing those precious babies and their new families. The friendships I have formed at both places have been such a blessing. Jenny Pleiman has been such an amazing friend to me and has also helped raise money in a few different ways for my out of pocket expenses. She also just recently photographed some butterflies and posted them on Facebook saying now she thinks of me every time she sees a butterfly. :) Check this one out:

Pleiman Photography 2012

Awesome, isn't it?? Hopefully that will be me soon. I'd love to think that I am in the cocoon stage, but I think that I am still the little caterpillar.......I just can't seem to catch a break! These relationships...definite answered prayers.

Friends and family...My best friend from high school, Michelle, is running a half marathon today in my honor. Since I cannot run (not like I would in the first place because I don't really like to run, haha!) since I can barely walk, Michelle wanted to do something for me and I am definitely honored that she chose to run this for me. Michelle has worked very hard and is active, fit and I am very proud of her! She's going to be moving out of state soon and I will definitely miss her! She was there to catch the birth of Alexa and Cameron on film for me. In the days that we never gained weight we would eat taco dip and watch My Best Friend's Wedding over and over. One fine day back in high school when we both worked at a local pizza place we were the only ones there and had a "feast" of all kinds of fried food. Ah, the good ole days of high metabolism!

My niece, Allison, graduates from high school at the end of the month. I am very proud of the strong, beautiful woman that she has become and want to wish her the best of luck in everything that she does! She has had quite the time with her leg and hasn't been able to do much of the one thing that she loves, and that is run. She's "back in the saddle" so to speak and I hope that she can get back up to speed with her running! :) Since she is graduating, my parents, Theron and Kim, and Aunt Sue are all coming in!! It has been almost 4 years (I think) since I've seen my Aunt Sue. It's been nearly 3 years since I've seen Theron and Kim and almost 1 year since I've seen my parents. I miss them all tremendously and wish that they didn't live so far away. (Prayer not really answered on this one! lol!) In all seriousness prayers answered because even though they live far away they are not far from my heart and I know that they would be here at the drop of a hat if they needed to be.

There's so many others that I need to mention and should mention, but this would be a really long blog post. :) Just know that I love each and every one of you for who you are. I am glad that God has answered my prayers in putting you in my life in one way or another.

One last BIG answered prayer that I must share. 9 years ago tomorrow, God answered my prayer to let my baby (Cameron) live. Cameron had turned blue and the ER doctor at Wayne told me that Cameron would probably not make it through the night. Cameron was airlifted to Children's in Dayton where the cardiologist on call, Dr. Bockoven, knew exactly what was wrong with Cameron and pretty much saved his life. Cameron was only 10 days old at the time and on day 12 he had heart surgery to correct his 1 of his 2 heart defects. Weeks later at follow up appointments with Dr. Bockoven, he shared with us that he didn't really think Cameron was going to make it either. He told us that he was very sick and that his story was a Reader's Digest story if he ever did see it. I thank God every day for that answered prayer. I don't know what I would do without my Cameron Everett! I don't know what I would do without any of my kids. Sure, they drive me crazy most days, but that's what being a kid is all about, right?? :)

So I'm just asking for one more prayer to be answered. That is of course to get better. Ultimately I would like it if I would get better and not have to have a double lung transplant. But, that would take a miracle...which, I am not opposed of! I just want to be better so I can get back to being somewhat the person I once was. I will never be the same person. Never. I don't want to be. I just want to feel better and be able to do the things I once could. Blessings to everyone!

Cleveland on Monday...bloodwork, chest xray, lung function tests. Then we will see my pulmonary transplant doctor, rheumatologist and infectious disease doctors. I will post more info on here next week!