Homecoming!

As most of you know by now, I was released on Monday to come home! Yay!! Re-reading over my last post I realize that I have some catching up to do. :) Some of you may already know the info if you are on Facebook. I put a lot of things on there because it is quicker.

So the neurosurgeon visit wasn't very informative. We were seen by a "fellow" and then she excused herself to take a page. It took forever (and I use that term lightly, lol!) before she came back in...with another doctor. We didn't learn anymore info then what we previously knew. I had a small stroke that affected my vision, more specifically the upper left quadrant. I am very thankful that the stroke was a small one and also that it only affected a small part of my vision. I have complained about it just because it is more annoying then anything, but I tell myself that it is something minor, and also something hopefully that will eventually come back. They tried to up my lipitor to 20 mg from 10 mg, but my transplant dr's said nope because that dose can interfere with one of my anti-rejection meds. They told me they didn't really need to see me unless something else came back up. I was supposed to go see the eye dr up there on the 24th, but apparently they said I didn't need to go...so it was cancelled. I guess it's just a wait and see game. There's nothing they can do for my eyesight because it is actually my brain that is affecting my eyesight.

I went that Thursday to do my 3 week post op visit that included the usual bloodwork, chest xray, pulmonary function test (my FEV1 and FVC), and see one of the docs. I was also scheduled for a bronch. I was super excited after my lung function test....I went from 73% the previous week, to 80%!!! Just to think that before transplant my lungs were functioning at 16%!!! How amazing is that?? Seeing the doctor, he was pleased with my progress but he also put a damper on it. He told me that one of the blood tests showed I was high in antibodies and that it could be a form of rejection. What?!? He said he wanted to possibly admit me, but he wanted to wait and see what the bronch showed. He said something about admitting me and then waiting for the results on Monday. What?!? so in other words, I would sit and wait ALL weekend in the hospital...just to see the bronch results. I told him I didn't quite understand. I asked why I couldn't just wait at our hotel where we would be together and have more room...I was starting to panic...I was feeling pretty good, how could I just "sit" in the hospital? I went to the bronch and was quiet most of the time while we waited. They took other people before me that had come in after me. (Doug was furious at this...as was I). Dr. Lane came in (I had seen him pre-transplant a few times) and he congratulated me and asked how I was feeling. I told him I felt pretty good, but was confused about the other dr wanting to admit me. He said that he saw that and was wondering the same thing. Doug and I both told him our thoughts and feelings; how it may be a step backward for me if I am in a hospital room/bed especially if no treatment is really being done. He agreed, said he would find out and let us know. The other doctor came in, said he talked to a few other doctors (Dr. Budev being one! Love her!) and the consensus was to send me to the hotel but I would have appointments on Monday to find out about the bronch and if I would need to do an IgG transfusion from the antibody level. I actually got a phone call the next day about the bronch results..everything was ok! A0-B0 (I think that's right?) which means no rejection!! They said they wanted to wait to see about my antibody level. For now, nothing is being done with that. I had an IgG transfusion about a week before transplant. I believe that I got another one right after transplant. They were giving me more so that my body would accept the lungs better...I had to have a blood type match, body type match and an antibody match. My antibodies didn't match with my donor, thus the transfusion. So I guess we wait and see what happens and will go from there.

At our hotel! My "spot". :)

After the bronch I was feeling really good (and I mean really good!) from the twilight medicine I was given. I only remember bits and pieces from when I went under until the time I woke up Friday morning. Apparently I ate broccoli and cheese soup on the way home in the car and about spilled it on me multiple times. I do not recall this. What person in their right mind would get soup for a person that's totally not "with  it"?? :) haha, only kidding...my wonderful husband is who! He takes care of me very well and I am so very blessed and thankful to have him in my life!! In fact, we celebrated our 16th wedding anniversary the next day! (another reason I didn't want to be stuck in the hotel ALL weekend!) I felt GREAT Friday from all of the sleep I was able to get from my "twilight sleep". We had checked out the casino and I won $100 of of $5! :) We ate lunch there and then went to the mall and walked around there for a few hours. We ate dinner at Five Guys and then crashed at the hotel. He said I wore him out! :)

I was getting tired! :)

Saturday I was a little tired, so we took it easy. I don't think Doug complained at all, haha! ;) On Sunday, we made it to the Botanical Gardens in Cleveland. I had found that they do a butterfly release everday at 2:00. Doug and I went but were at the 2nd level when they did the release. :( However, there were a TON of butterflies in there, it was simply amazing! We were able to see one butterfly, after the release, that his wing hadn't formed completely and was just sitting on the log. I put my hand out and he hopped on. Doug got some pictures and then a little girl with her mom and dad came up and the smile on her face was huge! They spoke Spanish, but I smiled and held my hand out asking if she wanted me to give her the butterfly. She shook her head yes and I transferred the butterfly from my hand to hers. Her dad snapped away with his camera. :)

This little guy had something wrong with his wing. :(

Me and the butterfly. :)

One of the butterflies at the Botanical Gardens

Love the Blue Morph and Love this guy! :) <3

Monday was another day of tests and an appointment with the pulmonary doctor. My chest xrays looked great...my FEV1 went up another % to 81%! I was excited about that. My chest felt a little tighter and I thought if anything my numbers may go down just a tad. But they went up instead. I was very happy about that! The dr said that everything looked great and I could go home!! We would still keep an eye on my antibody level and may have to do a transfusion again. I still had to see the surgeon before leaving for the day. The appointment wasn't until noon, but we were done with everything else by 9:30 so we thought we would try getting in earlier so we could get checked out of the hotel before noon and get home earlier! We were able to accomplish that as well! The surgeon's visit was with the nurse and that went smooth. She checked out my incision and said it looked great...that everything looked great...that I was a poster child for double lung transplant and to keep up the good work. We were out of there, packed up the rest of our stuff at the hotel, checked out of the hotel and was on the road at 10 till noon!

I absolutely love this man with all my heart! :)

The kids were super excited that we were finally coming home! The car ride home took forever! when we pulled up there were butterflies all over! They were on the fence, and some in the flower beds as you go into the house. Once inside, there were butterflies all around and "Welcome Home Mom (and dad)! on the wall. Love my kids! :) I'm still trying to unpack and organize things. It's mostly all done, but I still have my "good and bad days". The good seem to outnumber the bad...whereas before the bad outnumbered the good. I just feel so lucky and blessed, I just can't say it enough! God certainly has performed a miracle for me! Answered prayers!

Our fence with the butterflies. :)

The past week has been pretty good. I've had a few visitors and I have gone out and about twice. :) I went with Doug and the kids to get groceries on Friday and today I was kidnapped by 2 of my very good high school friends. We went to brunch at Bob Evans and then went to Tailgators for a margarita. (mine was a virgin) It was a good time with them...we had lots of laughs, and lots of hugs! :) While we were outside on the patio with our margaritas chatting it up, there was an older man outside who was smoking. I had my mask on and he asked us if it bothered us. I'm not one to speak up much, and one of my friends beat me to it. She said, "Not her and I, but she just had a double lung transplant so i probably does bother her." He said he was sorry and that he would move (I couldn't really smell it, maybe just a tad when the wind blew just right) and he asked (I think assumed) if I was a smoker. I said, "Nope, never smoked in all my life!" He put out his cigarette and walked into the bar. He came back out and said he was sorry to intrude and went on to ask me questions about what I had wrong and when I had my transplant. I told him it was a month today. He went on to tell me that the bartender had a friend that suddenly passed about a month ago and she donated all of her organs and he was sure I had gotten her lungs. I was highly doubtful but stranger things have happened so I didn't dismiss it. We went inside to take our glasses back in and the bar tender talked to me a little. She said she was going to go check the computer as to when her friend passed. She came back out to tell me that it was July 18 and she was 44 from Winchester, IN. She had a brain aneurysm and was air lifted to Indianapolis. She said her husband (I think??) wanted to find everyone that got her organs and have a meet and greet. I know from my end, I wrote to my donor...but I couldn't disclose my last name, my hometown, my transplant facility, my doctors, or my religious beliefs. I wrote a 2 page letter and had to put a separate piece of paper with it saying my full name, transplant, and date of transplant. I also had to put it into a separate envelope and then mail it to the coordinators at Cleveland. They have to read it to make sure I didn't put anything in it that I shouldn't have and then they would send it on to the donor's family. If the donor decides to contact me, they will write a letter that will somehow get to Cleveland and then Cleveland will pass it on to me. It's actually quite a process. With that all said, I just told them in there that it was a wonderful thing that she was able to donate all of her organs and that she has given the best gift that she possibly could. I got home and googled the name and found out that she actually passed on July 24 and she was 52, not 44! ;) Oh well, it was worth a shot and nice to know that there are organ donors!!!

Me, JanAl, and Sandra! Love these girls!! :)

I am currently sitting outside typing this blog. It feels sooooo wonderful to be outside and enjoying what is left of summer! The breeze...the smells....that feeling you get when you close your eyes and just listen to what's going on around you. Do it. Do you feel it? Doesn't it feel great? Take it from me (and my donor)...take the time to stop and see, feel, hear, smell, taste what's around you. It can be gone in an instant...