Catch up or ketchup? — Lung Story Short...

Post by Rima:

Almost three months later and here's another blog post. I've been a bit preoccupied since moving back to Colorado, my apologies! Anyways, to catch up real quick let's see what's been going on. Well, I'm now able to hike and breathe at the same time so that's good! It’s extremely exciting to do so! Yes, the altitude slows me down a little up at higher elevations in the mountains even with new lungs but I’m way faster than I was before...not even way faster, light years faster!!

Since getting back I’ve done several hikes around. My first big hike was in Vail at Booth Falls with Laima. Now that was a toughy for sure, but I survived. Did a handful of hikes but not as many as I would have liked. We did one in Granby with our brother Paulius and friend Nalini, one of the first few weekends back and stayed at an Airnb right on Granby Lake. The following Monday was Laima's 30th birthday so she had a bunch of stuff she wanted to do. Unfortunately it was cold and drizzly that day so no birthday hike which was a bummer but it's okay we got some sweet doughnuts and went and shot some arrows at an archery place. Birthday hike was postponed to the following Thursday Golden Gate Canyon State Park.

Golden Gate Canyon State Park birthday cheers!

I was able to do some hikes with friends in Rocky Mountain National Park two weekends in a row which was sweet! The first one was to Alberta Falls with two college pals, Kate and Jill. I saw my first moose!!! Not only did I see a moose, I was as close as about eight feet away! We had to hop off the trail so the moose could continue his way down the path.

The following weekend I went with Kate again and another college bestie, Emily, who was visiting for a week! We finally did a hike that I had been itching to do. It was to Dream Lake and Emerald Lake. It was pretty friggen chilly and gosh darn windy, especially going up to Nymph Lake which was even further. Emerald lake is the highest hike I've done, a little over 10,000 feet in elevation. It’s gorgeous up there with tons of chipmunks around by the lake waiting to eat your snacks... While my friend Emily was visiting we also drove down to Albuquerque, New Mexico and went to the International Hot Air Balloon Festival! I have always wanted to go so there; so I finally got a chance to mark that off my bucket list. It was super amazing with all the balloons everywhere, they even had ascents at night. I’ve gone to a few balloon festivals but none came close to this in size or were as epic.

Emily made her trip long enough to stay for my birthday. I decided I wanted to do a birthday hike so we hiked up to Saint Mary’s Glacier over by Idaho Springs. I tend to enjoy hikes that end at a lake or a waterfall, so there obviously was a lake at the Saint Mary’s Glacier. For my birthday dinner I just wanted Laima to cook me one of my favorite comfort food meals. She makes fun of me for it because it’s almost like thanksgiving dinner, minus the stuffing and the turkey. We had roast chicken instead but I always insist on the canned jellied cranberry sauce. I don't know why but I love that stuff.

The next few days I was going to be spending quite some time at the airport. First I was driving Emily there the day after my birthday as well as my brother who was flying out to California for work so luckily I could bring them at the same time. Then Laima was flying the day after that to Brooklyn to visit her old stomping grounds and friends for a few weeks. The day after Laima left I was picking up my parents who were going to be visiting for a week. Finally, the day after they arrived I had to go pick up my brother up…enough airport time? I don't think so.

My dad and I on the cog rail up to Pikes peak

My parents visit was nice. We did several things before I started feeling like poo. We went up to Pikes Peak taking the cog railway and then stopped at The Garden of the Gods. We also spent a day in Boulder where we ate at our favorite restaurant, The Med. We also drove up Flagstaff and hiked a short trail by NCAR. My brother was itching for us to practice shooting so we spent ALL day Wednesday at the shooting range…which, was a bit too long for us three. My body was aching since I had done an injection the day. I was inexperienced with what the side effects were, so I didn't realize just how much my bones and body would actually ache.

The injections are called Neupogen. They help boost my neutrophil count. Neutrophils are one type of white blood cells that fight against infection. Neupogen is a man-made protein that helps stimulate the growth of white blood cells. My neutrophil count had been pretty low, enough for them to want to do something about it. The count should be above 1,000 ideally the count should be 1,500-8,000. I've done several injections over that last few weeks. They give me a boost initially but it doesn't persist, my numbers eventually go back down.

The lowest they've gotten is 200. What was bringing them down were two drugs I am on. One was an anti-rejection med and the other was an anti-viral. The protocols often put patients on these meds for six months and then they are usually discontinued. Well it's been six months so now I can stop them. They also stopped the Neupogen. Initially my numbers went up a bit but then they went back down. Hopefully I will not have to keep doing these injections. The side effects are pretty annoying: fever, headache, bone pain, being tired, etc.

While my parents were still visiting, in fact the day before they left, I of course needed to go to the ER; after I already had been at the clinic earlier that day receiving IV fluids. The doctors were concerned with my fevers. They can last a day which is the usual for after the Neupogen injection, but not three days in a row. So they wanted x-rays, blood cultures from both arms and my port, viral swab and urine testing. They wanted to make sure nothing else was going on just in case. Post transplant, everything can change very quickly and people can get sick in no time at all if you don't catch it right away. At the end of that visit there was nothing going on, so the ER doctor even almost kept me over night, but then decided against it.

The following couple weeks after that I started to feel awful. My appetite had slowly been creeping away from me. I started to eat very minimally, such as a protein bar for breakfast and a protein bar for lunch or a small plate or bowl of something. I don't even remember what the heck I was eating but basically it was nothing. Some days I only ate twice and those two times were like I said probably a granola bar/protein bar and something else random.

A week after going to the ED (emergency department) I had to go in again…my transplant coordinator was concerned because I had a fever of 101.5. Any fever post transplant is a red flag usually, but we weren't sure if it was the Neupogen injections or not, since I was not feeling well at all. So since I needed to go to UCH, which is the University of Colorado Hospital, to do a monthly neb called Pentamidine, she was like "why don't you just go on over to the ED for some x-rays, blood cultures and viral swab". This ED visit I ended up getting admitted overnight. I was not expecting to stay so I basically had nothing with me. Luckily I had my external charger or else my phone would have died. Since I didn't have any clothes except what I was was wearing, I got to wear the hospital fashion from when I got to the ED and until I was able to leave the next day. Not a fan of wearing those johnnies.

The trip to the ED didn't determine the cause of anything. I continued to feel like a soggy vegetable, in fact slowly getting worse. I started to crawl into bed a lot and began napping a bunch the week Laima came home. I had begun to develop a dry cough the week before, which was really weird. My throat hurt a lot whenever I awoke. It was so painful to swallow! Even cough drops didn't help much. It felt like knives were stabbing inside. I thought it was because I might be sleeping with my mouth open and it’s dry as the desert in Colorado so that doesn't help. But, I don't think it was the cause, because I’m not a mouth breather. It felt as if I had a cold but not. Another symptom I had was super stuffy sinuses and very sneezy. My brother was convinced I had a cold but my viral swabs for flu, rhinovirus and other cold viruses came back negative and I had done them more than once.

The week Laima came back I had to go to either the clinic to get something done like X-rays or iv fluids or to go get labs drawn every single day. One of the days we had a little meeting set up with the Rocky Mountains chapter of the CFF (Cystic Fibrosis Foundation). We finally are going to start getting involved with them here in Colorado. It was great to meet Jennie and Rachel at American Cultures our favorite Kombucha place.

Later that week I was told that I needed to come into the hospital to get admitted. I just wasn't doing so hot and my levels for things were all over the place and I just kept feeling like crap. They wanted me to get a little tuned up before our trip to Minneapolis the following week. My two month bronchoscopy and clinic visit was due. So in I went on Thursday and stayed until Sunday. Those few days I slept so much it was crazy. Well I mean I know other people probably sleep more than I did but still, for me it was A LOT! I would sleep until almost 2:30 p.m. a few of the days and then be up for an hour, then go back to sleeping and then wake up later and nap again. I also had been able to fall asleep faster. They said I’m probably tired because of my low hemoglobin. Usually I’m around ten but I had been down to seven, I guess it means I'm anemic. I have been hovering between seven and eight and was told that when the number goes below seven I would need a blood transfusion, which luckily hasn't happened, but it might make me feel better.

While in the hospital they put me on two IV antibiotics. One to fight the Staph Aureus now growing in my new lungs and an anti-fungal for the thrush in my throat which was the cause of my AWFUL sore throats. On top of those they were giving me a boat load of fluids. I felt like I was getting up to pee like every hour while I was sleeping. It was a pain since I was hooked up to the IV pole so I had to unplug it and then role it to the bathroom. Sunday which is the day I got to go home. It felt super long since we were waiting for me to get discharged, that process took a lot longer than they said it would but hey that's how hospitals are. They finally let me go around five in the evening. We still had to stop at the pharmacy on the way home to pick up some antibiotics and fill up with gas so we wouldn't have to at 5:30 a.m. the next morning.

Once we got home we had a lot of stuff to do. First eat dinner, then unpack my stuff from the hospital and do some laundry. I hate unpacking and packing, both suck! They suck especially when you're on a time crunch to hurry to bed so to can wake up early to drive fourteen hours. I had totally forgotten that I had to do my weeks worth of meds in my pill box and a little extra. My brain hadn't been working to its full capacity lately so that didn't help since I ended up filling the weeks worth box and then putting all the bottles away and an hour later realized I needed two more days worth. Also, I almost forgot to pack all my tube feeding supply stuff, that would have been bad to forget since I've lost a lot of weight recently. We didn't end up going to sleep until around midnight due to finishing up with packing and getting all our stuff together. We were ready for Minneapolis!