How are you? and other common questions

I wanted to get on here sooner and blog, but the week got away from me. A week ago on Saturday, heaven gained another angel. One of my old co-workers lost her long and courageous battle with cancer. She had taught Austin and Cameron in kindergarten and was an amazing teacher, woman and friend. Even though she had cancer and I had my lung disease, we had a lot of things in common and shared notes often. I am sad she is gone, but I rejoice that she was a part of my life and that she is now pain free. I look forward to seeing her again!

I have been having many more good days then bad lately! I am so happy with my progress in the last 2 months since transplant. I still feel at times that I am having an out of body experience...that this still isn't really me, that it isn't really my life. But it is. The last few days I have felt great...and have had that awesome "nostalgic" feeling...the kind where you are young, carefree, not a worry in the world. The kind that gives you that feeling of driving in a car on a warm fall night with your windows down and the cool air rushing through. I had one of those nights last night. We had went to a friend's house for pizza, and to see Bella, our dog we had adopted and then ended up having to find a good home for because we unfortunately could not take care of her like we should. The night was perfect for me...family, friends, laughs, but most of all just being alive and breathing in the fresh air. I commented to one of our friends as we walked across her yard to go see Bella across the road that 3-4 months ago I would not have been able to walk that far. How I would've been so out of breath. I also said that I would've been dreading the short walk knowing how out of breath I would've been. But yesterday as we walked over (twice for me!) I wasn't out of breath and I could fill my lungs with the wonderful, fall, country air! It was an awesome feeling and one that I will not forget. I said a little prayer for my donor at that moment, thanking him/her for their lungs that once gave them life, now gave me a second chance at mine.

So I often get asked many questions. the first one of course is "How are you?!?" Before transplant I always hated this, but I know no one really knows what else to say, so this is it. I would always reply, "I'm here."...or "hanging in there." This was the truth. I was here and I was hanging in there. If I was out and about (which was rare) you would likely see me with a smile on my face. To be honest, smiling was the last thing I wanted to do. All I wanted to do was curl up in the fetal position, stick my thumb in my mouth and cry. Sure I had all of the questions of "why me" and sometimes even maybe felt sorry for myself. But I would pull myself together to produce a smile and changed my thinking to "why not me?" and what lessons can I and will I learn from all of my experiences? Daily living was so very hard....imagine yourself getting up every morning and before you can make it to the restroom you feel like you have ran a marathon. Would you feel like smiling? Would you feel like moving at all?

Today when I am asked, "How are you?" I still smile (usually it's not a fake one!) :) and I usually say that I am doing pretty well. This is the truth, as I am doing pretty well and for the most part I am feeling pretty well. However, I still feel like I am not being totally honest. See, what always sits in the back of my mind is that things will never be the same for me. I know everyone goes through changes in life, and this is a major change for me. A lot of people think that now I have had my lung transplant that the "old Kara" will and has returned. That couldn't be farther from the truth. Sure, I am still me, but I am different now. I have changed from that caterpillar and have emerged as a brand new being. What people do not understand is that transplant is not a cure!!! It's not. Sure, it "buys us more time", but I constantly have to be on the lookout for rejection. In fact, my last bronch (Sept 5) showed I had minimal rejection. A1 B0; Airways 1, Bronchioles 0. No rejection would be A0 B0. I am being treated with prednisone for now with the hope that the rejection will go away. There is the chance that it will not go away, and there's the chance that it could/would get worse. I am staying optimistic though and I will go back for another bronch on Sept 27 to check and see if it's still there. Rejection will always be in the back of my mind, and something that I will get multiple times over the course of the rest of my life. When I had my transplant, I was trading in one set of problems (my old lungs that didn't work) for another set of problems (new lungs that work, but the possibility of rejection, meds to take the rest of my life that can cause cancer, or the need for another organ transplant). None of that may happen, but with me being so young, it is a strong possibility I would have to have a 2nd lung transplant...or a transplant for my kidneys because of the damage all of the meds did to them...or I could develop cancer from all of the meds I take...the list is practically endless. Now I'm not saying that I am sitting around now worrying about all of these things, because I am not. I am trying to still recover from my transplant (technically I should still be in Cleveland!) and live my life. Heck, I could get hit by a bus walking across the street! We do not know when our time is up...I thought perhaps mine was and I was ready for whatever lie ahead. Now I am just thankful for this second chance I've been given!

Another common question I get is, "So everything is great now?" I answered this a little bit in the above paragraph. My answer to this is "to an extent". Everything will never be "great". I still have to be very careful in what I do and where I go because the risk of infection is greater for me then for anyone that is "healthy". That is why I wear my mask all of the time. (although I didn't wear it last night at our friends...I probably should have, but we were outside with the breeze, I kept my distance from others, and for once I just wanted to feel "normal"! :) All of the medications I am on suppresses my immune system and therefor I am more prone to catching things and I will likely end up in the hospital over something that a "healthy" person calls the common cold. The sniffles to you = respiratory infection and time in the hospital for me.

Which brings me to another question I get asked...and maybe not get asked, but the stares..."Why the mask?" and/or "How long do you have to wear that?" I laugh because I can clear the room (or elevator) rather quickly when I have my mask on and people don't know who I am. I have told Doug that I am going to put a sign on my front and back that says, "Don't worry...it's not contagious. I'm protecting myself from YOU!" People think I am the one that is sick, but in actuality I am protecting myself from everyone else's germs. I've got to protect these new lungs!!! So that is why I am wearing it. As to how long...I haven't really been given a time frame. Cleveland told me for at least the first 3 months when I am out and about. If people come over and they are sick, THEY need to wear a mask. (However, it's easier if just I do....BUT...if you are sick...or your kids are sick, please don't come visit!) With flu season just around the corner though, I will be wearing it out everywhere for at least the first year, and maybe even after that. I do not like wearing the mask. It is very annoying...hot...steams up my glasses....but, it is protecting my lungs from germs, and keeping me healthier, so I really am not going to complain. So there is no answer as to how long. I could probably stop wearing it after 3 months (but to clinic, hospitals, schools for the first year) but I probably will keep wearing it after the 3 month time frame.

I am still trying to adjust to my new life and what I can and cannot do. I am still going to have my bad days, that's for certain. It will take me awhile to get back to my "new" normal, and I am going to have some rocky roads ahead....but I am not going to complain. I'm going to cherish each day that I am given and look at it with a new set of eyes. (and lungs!) I am not sure if I will be able to return to any type of work, my doctors have not said and I still do not know what's going on with the vision in my left eye as that has not come back yet either. Doug and I will be going back up to Cleveland at the end of the month for more appointments and tests. I will see the eye doctor and hopefully I will gain some insight on my sight! ;) I will also have another bronch to check on the rejection. I just hope that I do not have a repeat of the last bronch where I remember EVERYTHING!! :(

So to answer your questions: Yes, I am doing fine, great, fantastic! For the most part anyway. :) Yes, I have to wear the mask and I am uncertain as to how long I will wear it, but it is protecting me from many airborne germs. Most importantly keep in mind that my transplant is not a "cure". It is an answer to a prayer and I am so very thankful, but I will continue to live a different and more careful life from now on. If you or your kids are sick (or you've been around someone sick) please keep your distance! It's not that I don't want to hug you or be around you, I just don't want or need the sickness as it can and will make me very sick and my lungs will not be very happy!

Breathing Easy

“Adding wings to caterpillars does not create butterflies, it creates awkward and dysfunctional caterpillars. Butterflies are created through transformation.” ~ Stephanie Marshall

It’s been a little while since I have last posted on here. I apologize….but…I’ve been living life a little more each day! :) It is very nice to be able to wake up in the morning and be able to do things without getting out of breath and not having to lug around the oxygen tanks. I felt so tied to the house with my “lifeline” of the oxygen concentrator. It feels weird not having the nasal cannula in, but I am getting used to not having it! ;) I hope to never have it again!! I still have my bad days but they are less frequent then before! The meds are still doing a number on my stomach and I am constantly taking Zofran to help try and combat the icky feeling. Sometimes it helps and sometimes it does not.  My eye is also still not right and it still throws me off quite a bit, but I am trying to get used to it. I’m still hopeful it will eventually come back. Only time will tell.

Doug and I went back to Cleveland on Tuesday and Wednesday of this week. We left Monday night because I had to be at the clinic early on Tuesday morning for tests. After lung transplant the doctors need to check the stomach and esophagus to make sure how we are digesting our food; check for acid reflux and heartburn. It is possible for the acid reflux to aspirate into the lungs…which would obviously be no good! If they find the reflux to be bad enough, they would do surgery to correct it. So the first test was a gastric emptying test. I had this test done once before at Wayne. It was gross at Wayne…I had to eat oatmeal (yuck!) with the radioactive dye in it, and then had to lay on a table for an hour while they took pictures of my stomach. On Tuesday though, I got to eat scrambled eggs and toast with the radioactive dye. My taste buds aren’t what they used to be, so I didn’t think they were too bad! :) The test was 4 hours, but they took 1-1 minute picture to start, then waited an hour, took another 1 minute picture, waited another hour, another picture, then 2 hours and a final picture. The results from that was negative; my stomach was moving things like it should! Yay! The doctor explained that after lung transplant they have had many patients with a slower stomach; in other words their food digests much more slowly.

My second stomach test that day wasn’t as easy as the first. The esophageal manometry test is seriously no fun. I’ve had it done twice before and was somewhat prepared. I even had the same tech as last time. This test involves numbing one side of your nose and inserting a large tube thing down it and down your throat. The tube is pushed all the way down your throat until it gets to your stomach. (all the while you swallow water to help it get there.) This time around I gagged quite a few times and thought that I was going to see those scrambled eggs again. Luckily, I did not…and we were able to finish the test rather quickly. I also had to have a PH probe in for the rest of the day with removal at 8 am the next day. Though the tech said that Doug or I could remove if we needed to. The probe was just like the test I had just done. The tube (though skinnier thank goodness) went down my nose, and down my throat. Once in place, the tube was taped to my cheek and also to my neck. I had a gadget to push a button when I ate; when I took meds; when I slept; and when I had heartburn or acid reflux. This thing was no fun!!! I know that I shouldn’t complain because it could be a lot worse….but it did really stink! Doug and I were going to go out to dinner with friends, but eating and talking were both an issue for me. It was making my throat hurt even when I was just sitting there. I had tried to take some of my many meds (I had to skip all but my anti-rejection meds for the tests) but I had 2 get stuck, so I called it quits on the meds. (again, except for my important anti-rejection ones!) I was quite miserable. I was very tired and I did find a somewhat comfortable position lying on my right side…the tube didn’t seem to irritate my throat that way. The only issue with lying on my right side was my incision…this is the side that has bothered me more then the other. Come 6:00 AM, we were up (didn’t sleep well) and Doug finally pulled the tube out for me. Ahhhh!!!  

 

I was actually looking forward to my Wednesday appointments and bronch. (crazy, I know!) I wasn’t scheduled until 7:25 to start the day, but I wanted to get there early and start with appointments with the hope that I could get my bronch in early and we could head home. We did arrive at the Crile building about 7 AM and I had 17 vials of blood taken from my arm! It’s been awhile since this much had been taken from my arm at one time. Next up was the pulmonary function lab to check on my lung capacity. I was ecstatic and actually did a “happy dance” when walking out from the exam room to Doug in the waiting room. I told him that my numbers went up greatly! When I was there August 14 (a little over 3 weeks ago) my FEV1 (Forced Expiratory Volume….amount of air I can forcibly exhale in 1 second) was 81%. Before transplant (July 2) it was 16%! Quite a difference!! But on Wednesday…September 5, my FEV1 was 93%!!! My FVC was 80% and that was up 10% from August 14! Doug was very pleased and told me that I’m probably doing better then most people that don’t have any lung problems. :) After that test, I went for the usual chest x-ray and then we dropped off the recorder box from the lovely PH test the day before.

 “The butterfly counts not months but moments and has time enough.” ~ Rabindranath Tagore

Next up we met with one of the post-transplant pulmonary doctors. Doug and I really liked him. He had a great sense of humor. He is more my type of doctor. Sure, the other doctors there are fantastic…but there was something about this one that I enjoyed more and I think most of it is because he can joke around and also be serious….and I know how to take both. Anyway, we spent close to an hour with him I believe. I think we learned more from him then we have some of the others. First of all, he was VERY impressed with all of my numbers and with how well I am doing. He saw my 93% for my PFT’s and all he kept saying was “Wow!” He believes I can still get higher, but told me I am pretty high so don’t get disappointed if next time there isn’t a huge jump. Here I thought I had done slightly “bad” because my throat was hurting from the previous days events. My incision was also hurting some so I felt like I couldn’t inhale as well as I had been. I guess not since I had a 12% increase! He reviewed my chest x-rays and remarked how great they looked in comparison to what they used to look like. He also showed us where the wire holding my sternum together was. (Doug and I didn’t know that the wire was in there!) He told me that I will set off the metal detectors so to be aware and also cautious of being “strip searched”. Haha! I asked him a few questions as to what I could do or couldn't do yet. He okayed me to drive, yet I don't feel too comfortable doing so because of my eye. Doug let me drive home from Greenville yesterday and I also drove up town to get my hair done yesterday, and I picked the kids up from school today. I did fine, but I still don't feel 100% confident in driving with my eye like this. I also asked the doctor if it was ok if I got a massage yet or not since I have a gift certificate for one that expires in December! He said ok, but maybe wait a tad longer just for me to be comfortable. One other thing I asked him about was if I could get my hair colored or highlighted. (Getting tired of those grays!) ;) He just looked at me, turned to his computer, and typed in his notes, "Do whatever you would like with your hair". Doug and I got a good laugh out of that.

 

I also asked him if the biopsy results from my old lungs were back yet and he said they were. He went on to read from the report and commented that it was confirmed I had Bronchiolitis Obliterans and that it was caused by my Rheumatoid Arthritis. That was a relief finding out that it was BO for sure that caused all of this. It still really blows my mind that I went from being healthy to being so sick and needing a lung transplant in such a short amount of time. Another thing that he talked to us about was that I have a positive peak flow antibody. (I think I have that correct.) This has to deal with my donor and the antibodies that have developed with my lungs. He said this is a part of rejection if not treated and they have debated on whether to treat it or not. Since I am doing so well…my PFT’s are increasing, my bronch’s have come back fine…then they do not want to treat it right now. He explained that as long as I am doing well I could “pull out of” this antibody thing. So that is what we are hoping for. Every day I keep track of my temperature (anything above 100 warrants a call in, and could be a sign of rejection), my weight, my blood pressure and pulse in the AM and PM, my blood sugars four times a day, and microspirometer readings in the AM and PM (a drop in these could also mean rejection). As long as I am vigilant about keeping track of all of this, I am sure everything will be okay.

The last thing left to do on Wednesday was the bronch. For this procedure, you are given twilight sedation and a scope is put down your nose and throat. The scope takes pictures of your airways and a small part of your lung is taken for biopsy. The part taken for biopsy is the surefire way to tell the doctors if you are in rejection or not. I didn’t have any bronchs pre-transplant. I was told this was too dangerous for me. This was the only way to determine if I had Bronchiolitis, but they couldn’t perform it so I never knew for sure that is what I had. (until they biopsied my old lungs and confirmed the diagnosis) The first bronch I had was right after transplant. I was still under sedation so I do not remember any of it. The second bronch I had was August 13 and I was nervous because I didn’t know what to expect. Before going back for the procedure, I had to do a nebulizer with Lidocaine so that my throat would be numb. This isn’t much fun, but it wasn’t horrible. Once I was back there, the atmosphere was actually lively and I felt relaxed. I was given the “good juice” and my eyelids got heavy and before I knew it I was out for the count. I do not really remember much of anything until the next day. I recall asking Doug as we left for a cup of cheddar broccoli soup, and I also recall eating it as soon as I got into the car. I do not remember anything much other then that though. :) I felt great the next day because I had gotten so much sleep!

So this time around I figured it wouldn’t be much different. I even commented to one of the nurses…”Is it wrong that I am actually kind of excited for the bronch?” She didn’t really respond, which I should’ve taken as a sign that things probably weren’t going to go as planned. I think I have a start to a cold, so doing the numbing nebulizer wasn’t great this time around. My throat was numb making it difficult to swallow and I was coughing from gunk in my throat. I would try and swallow but would end up choking on my spit. I get wheeled back to the procedure room and it was a different doctor this time. One of the nurses helping with the procedure told me they would give me the juice, put some gel in my nose that I would have to suck up, put a towel over my eyes to protect them from the procedure, and then they would get started. As she said this, I just felt like this procedure was going to be a lot different from the last one. Boy was I right! (I usually like to be right, but in this case, not so much!) I got the “good juice”, but my eyelids never got heavy. The towel went over my eyes and I could feel myself starting to panic more because I don’t recall any of this from before. Then the gel in my nose…sucked it up…then they started inserting the scope in my nose. At one point during my many gag sessions, the other nurse in there said aloud that I was wide awake and asked the doctor for the ok to give me more good juice. He gave the ok (I think) and I got more, but I was still wide awake. I heard the doctor keep saying that I was doing great and we were almost done. Easy for him to say. Well, I did survive…and the doctor and the fellow assisting left the room leaving me with the 2 nurses. I asked one of them for a suction to get the extra spit accumulating in my mouth that I couldn’t swallow. I didn’t say much other then that and was wheeled back to my area for “recovery”. (I use that term lightly!) As I’m being wheeled back, I see Doug with the nurse that was there earlier. I looked at Doug in the eye and told him, “That sucked! I was wide awake for the entire thing!” As I was blurting this out, I noticed the fellow that was assisting the doctor talking to another patient right across from my area. As soon as the words left my mouth his head jerked around to look at me. I didn’t really care though because I was just being honest! He went on with his conversation and left. A few minutes later, one of the nurses from the bronch room came to me and told me that if I felt uncomfortable during the procedure that I had every right to write a letter to the department explaining my experience. She told me that that particular doctor is “old school” and he doesn’t believe in a lot of sedation. (obviously) The way that she talked and the fact that she came back to talk to me, gave Doug and I the indication that she felt bad for my experience, that it has happened to others, and that she didn’t really agree with it. Even though she didn’t actually say this…I felt this was what she was trying to tell me. I had reports of both bronch’s and it lists what kind and how much sedation/pain meds are given and I compared them. I had quite a bit more for the bronch in August compared to the one this past week. I’m not sure if I will write a letter…but I do know that for my next bronch next month, I will be asking to get the equivalent from the bronch in August.

As of Friday afternoon, I still do not know the results of the biopsy. I did call earlier today, and my coordinator called me back. She said that the results weren’t back yet but the preliminary results are negative. She will call me on Monday though and give me a definite reading. I will probably say something to her about the procedure then too.

I still have not heard anything back from my donor’s family. I know this process could take a little while. I sure hope they will contact me as I would really like to get to know my donor. I would at least like to see a picture of him/her and know who they were and where they lived. I guess whatever God sees fit for me to know, He will provide that information when the time is right. And perhaps that time will never be right.

I found some really neat butterfly quotes that I threw in my blog post here and there. :) I thought they were neat…and I have a few more too! :) Doug and I just want to thank everyone again for all that you’ve done. Prayers, phone calls, texts, cards, meals, gift cards, donations…everything is greatly appreciated!!! We can’t thank you all enough! I (we) feel that God gave me a miracle and I plan on living life to the fullest with no regrets! :)

 

An exchange of thought between a caterpillar and a butterfly:

Butterfly: the change you see in what I was and what I am is due to what I did when I was you. I made change happen! I became the change.

Caterpillar: Don’t be so proud of yourself, I am there and will always be, to remind you of your past. You are inspiring, but I am the inspiration. They look AT you, they look UP to me.

~Manali Oak

 

 

A butterfly says, “The caterpillar – me is history; my metamorphosis, a mystery; and today…today is a present; my struggle gifted me.”

~ Manali Oak