More Tests, EKG, Echo, CT Scan, Bloowork, Urine

 More Tests, EKG, Echo, Chest CT Scan, Bloodwork, Urine

    I had still been plagued with shortness of breath so a few tests were ordered to see if maybe my heart was causing the problem, and to see if the nodules on my Ct scan were any better.  I had my EKG and it was fine. Next was the echo. That too proved benign. The chest CT scan showed the nodules had gone away leaving only mild changes to the lungs. Oddly by the time these results came back, my breathing had gotten quite a bit better. I realized also that in the morning my blood pressure had been a bit low making it harder to breathe so I've been occasionally holding my losartan and using hydralazine as needed. I started taking my blood pressure while standing to as it seems to dip lower when standing. Low blood pressure is also damaging to the kidney so I need to be careful not to let it get too low. My creatinine has continued to creep up. It was 3.15 two weeks  ago. This week it was 2.45 but that's because I did not take my lostartan the day before my blood work and losartan falsely elevates creatinine. My potassium has been high as well. It was as high as 6.0 and that meant I needed to take a potassium binder to bring it down. I also was put on a low potassium diet. It's pretty boring as most food has a significant amount of potassium in it. Even with eating less than 2000 a day, my potassium remained on the higher side. I was just put on sodium bicarb tablets. I was told this may help bring my potassium down a little. I really hope it does. My urine has showed elevated white blood cells but no bacteria has cultured. This may or may not lead to a short term antibiotic in the future.

Small Update

 Small Update

 

    I finished my last IV antibiotic dose Thursday night. I still have a week of vancomycin left. The posaconazole will be another 3- 6 months. On Friday night, I got a lab corp text that said my labs were ready to view. I had gotten bloodwork taken on Tuesday. My cyclosporine level was only 38 and it needs to be around 150. This was concerning. My creatinine had also risen to 1.6. That's not good either.  I had been drinking a large amount and had even increased my usual fluids to an extra drink for a total of 6, 12oz drinks a day. I thought that most likely, my coordinator would tell me to add 25mg of cyclosporine at night. I just wasn't sure if she'd want me to alternate 25mg and 50mg every other night as sometimes we do. I know that the posaconazole increases the cyclosporine by quite a bit. Then I was also concerned that the cyclo would cause my creatinine to increase even more as it's nephrotoxic. I ended up calling the emergency line and speaking with a doctor who said to increase the cyclo to 50 every night and get new labs on Tuesday. So that's where I'm at now. I am still short of breath with mild activity. I still don't know the cause. My lungs feel clear, no wheezing and no mucus.

Clinic Visit

Clinic Visit

 

    Wednesday I went for my usual clinic visit at the transplant center. I was dreading doing the lung function test as I have still been a bit out of breath with exertion and my numbers at home, on the peak flow and incentive spirometer, have been a bit low. To my surprise the technician told me my numbers were good. After telling her I was shocked she compared my numbers to my last numbers and the FEV1 went up by two points from 93 to 95. I know something is still going on in my lungs and I've only been on the Posa for a week so I do think my numbers still have room to improve. I also still have not been going to yoga. I walk occasionally at the park .75-1 miles, albeit slowly. The doctor and I discussed the possibility of staying on the meropenem another week to make sure the infection is really gone this time. In the end, we decided to do one more week. It seemed like such a fast visit as I was able to skip X-ray which is across the street from where we park so we didn't have to walk across the street through the buildings twice like we usually have to do. Since I already did several CT scans, I didn't need an X-ray. I got a script for another CT scan to be done in about a month or so after the Posa has some time to work. I don't love getting so many CT scans due to the radiation they emit. I try to get one every two years, sometimes once a year. My mom accompanied me to the appointment and we got some pizza at my favorite pizza place afterwards. I saw my blood work came back today and my potassium was quite high at 5.9. I had made chili and was eating it for a few days and that was probably not a good idea as its full of potassium. I have to be more conscious of my potassium intake as I have a later stage kidney disease and I take two medicines that raise potassium levels. My stomach hasn't been quite as distended as it's been but it is still retaining some fluids. All in all I'm happy with my progress, I just wish I knew I was out of breath despite my pft being good. My doctor also put a pulse ox on my finger and walked with me a bit. My sats were 100, so the windedness is a bit of a mystery.

Brain MRI and an Update on Medicines

 Brain MRI Results and an Update on Medicines

 

    I checked the status of my Posaconazole this morning and it showed a delivery date of November 1st. I wanted to see if I could get it overnighted as I've done that in the past when I really needed a medicine and was going to run out. The first woman I talked to said there was nothing she could do other than to charge me $20.00 for the service. I wasn't happy with that, as in the past, it's always been free of charge. So, I called again a little later. This time I got a woman who was very happy to help me and she was able to cancel the shipping and have it shipped sooner. Now I just need the Prevymis, my CMV med, to come within the same window of time. I saw it was already shipped so I'm hoping by Monday or Tuesday I can start treatment for the Aspergillus.

    I also texted my infusion nurse this morning to see if she knew I would be going on IV antibiotics. I called around 9:30 and she said she could come by 10:30 to access my port. Soon after that text, I got a call from the infusion pharmacy saying my meds will arrive by 1:15. My coordinator called me today, right after I texted the nurse. I had wanted to know about the brain MRI I had and what the nodules were actually from in my lungs. She told me the Brain MRI looked fine. I probably should have inquired a little more about this. I know in the past it showed a Ratheke Cyst, but I also know they can be rather benign as long as they don't grow. She told me that the nodules were an infectious reaction from either the aspergillus or the psuedomonas.

     When my nurse arrived, she said she was happy I called early so she could fit me in. I was just glad she got the ball rolling so quickly for me. She said work has been a little slow as she has many hydration patients and they were all told they couldn't be helped as there is a saline shortage due to the Baxter plant being flooded from the Hurricane in South Carolina. I had no idea. She said they make 60% of the saline there for the US. I'm just glad I was able to get my medicine. The nurse was asking me about my new med doses and changes and she reminded me I usually do vancomycin to prevent C. Diff. I really don't like taking vanco as it does give me a bit of diarrhea but we'll see. So, I once again emailed my coordinator. She must be sick of hearing from me by now! I feel like I've emailed her 20 times since this whole thing started.

    When the medicine came, I noticed it was a bit heavier than usual. The balls are to infuse over 1 hour instead of the half hour I have become accustomed to. That's really not a big deal. Like I said, as long as it doesn't interfere with my sleep, I'm happy. I got my first dose at 1pm as I mentioned so I have to take the second dose a little earlier and do it at 11pm or so. I have to get it back to a normal schedule. There's a two hour window for the medicine.

    It's strange but there are times during the day when I can breathe better than others. Sometimes I'm winded just sitting and talking and other times I'm not. 

 

 (My IV antibiotics)

More Bronch Results Come In

 More Bronch Results Come in

    My skin appointment was uneventful and that's always a good thing. I go back in 6 months but I usually end up going earlier than that. I called my mail order pharmacy about my Posaconazole. I am having trouble getting it despite the fact that my doctor sent in the prior authorization. They even confirmed on the phone that the prior authorization went through. Despite that, they said it needed to be processed and that could take 7-10 days. I told the woman I really needed the medicine due to my fungal lung infection and she put me on hold only to come back to say that it's their policy and there was nothing she could do to speed up the process. She did say it was possible that it could process before the time frame given.

    My coordinator called a little later in the day and I figured she was calling about the Posaconazole. She wanted to know what the mail order pharmacy had to say; if there was any progress. She then told me more results came back and they showed I had cultured Pseudomonas. This would need to be treated with two weeks of IV antibiotics. Although the results showed I was sensitive to Ceftazadime, because the infection did not clear with two weeks of treatment with Ceftaz from September, I would need to try another medicine, Meropenem. I have been on that before too. As far as my memory goes, I think I tolerate that one well too. It's only twice a day so that's no problem. I just don't like when it's three times a day as it interferes with my sleep. My coordinator then told me I also have rhinovirus. That explains my constant runny nose! 

    I had been feeling bad that I haven't been going to yoga, and although I did manage two small hikes that day in the forrest and a small walk yesterday, I haven't really been exercising. I'm just more winded than I have ever been in the last 13 years. I did email my yoga studio too tonight letting them know what is going on with me and asking for a hold to be put on my account. They were kind enough to put a hold on my account once before. Here's to hoping they will place a hold again.

Bronch Results, Aspergillus

 Bronch Results, Aspergillus

    Yesterday I felt pretty tired still, as if the bronch meds were still affecting me. I slowly gained a bit more energy as the day went on. My lungs felt much more clear with the mucus removed. I went out for pizza at my favorite pizza place with my parents. It did not disappoint. I decided to drink a bit less fluids since my stomach has been a bit distended lately. My coordinator gave me a call around 4:30pm yesterday telling me that the material taken from the bronch gets sent to two different labs. The first lab looks at the material through a microscope and from that they could tell that one, I did not have any rejection, and two, I do have an Aspergillus infection. This didn't really shock me as I figured I had to have some sort of fungal infection. It is just a little strange though as I have had to this for some time and I haven't been around dirt or dead leaves prior to a couple of days ago. My last Aspergillus infection was 5 years ago. The plan is to start Posaconazole, which I am no stranger to. I will take 3 tabs twice a day the first day and then 3 tabs daily. The only thing different is that I use to take the liquid form of Posa and it used to be 4 times a day for two weeks to start, and then twice a day after that. I used to do a 6 month course but I'm not certain how long I will be on this for. I will ask when I see the doctor on Nov 6. My coordinator said I will need blood work for the first several weeks as My Cyclosporine dose needs to be lowered as the Posa will exponentially increase the level in my blood.  I also need to take half the dose of my CMV medicine so I have to get a new script for that. I'm waiting for both meds to arrive through mail order. I will do some kidney labs and urine on the 6th as well. I sent an email through MyChart to my nephrologist to let him know my creatinine level and about retaining fluids. I haven't heard back just yet. I'm hoping I don't need a kidney biopsy. I didn't go to yoga again today and I have the skin doctor tomorrow, so Friday I will try to get to yoga. It's a meditation class followed by a beginner yoga class so I'm hoping that will be light enough to get through. My right lung still feels wheezy and I'm a bit out of breath when I exert myself, not terribly out of breath but noticeably out of breath. I'm gonna aim to get a walk in at the park today as it's another beautiful day. I'm going to go to sound healing class later tonight.

 

edit: Nephrology got back to me and said it could be that creatinine is elevated due to the infection. Once the infection is cleared they will reassess, but they just wanted me to know they were aware of things. They mentioned possibly switching my immunosuppressant after the infection clears but I don't think that the lung team will agree with that.

Brain MRI, Bronchoscopy, and Rising Creatinine (Kidney Disease)

Brain MRI,  Bronchoscopy, and Rising Creatinine (Kidney Disease)

    My coordinator called me last Tuesday to say that she realized my bronch was scheduled for the following Monday (Today) and I would also have a clinic visit that Wednesday. She offered to have the clinic visit postponed and told me I could do the Brain MRI that was scheduled for Wednesday, locally instead. She didn't want me to have to come to the city twice. I liked the sound of that. So I had my MRI last Thursday. For this MRI they put a little plastic cage or covering over your face and two things that slide in to cover your ears to secure your head. I know I'm claustrophobic so I just closed my eyes as soon as I laid my head down. Then I went head first into the MRI machine. I started to panic for a minute because of the claustrophobia and I almost pressed the button they give you in case you have trouble. However, I realized I needed to get this done and if I came back out I would have to come back in at some point so I just sucked it up and kept my eyes closed tight so I couldn't see the small space I was in. Twenty minutes later it was done and I was free! 

     I already had my blood work that Tuesday as I mentioned as my coordinator needed to check my cell counts before my bronch. I emailed her on Friday, the last day I could talk to her before the bronch. She was able to find the results on Labcorp's website.  For some reason, despite the fax number being on my script, the labs haven't been making it to the database at my hospital. The blood work was good enough for the bronch. My creatinine was 2.32 though. It had been holding steady at 1.9 for a while but it has been creeping up again. My coordinator said that next week I will need to do a urine test and some other kidney labs to check on things.

   Today my mom and I woke up early and headed in for the bronch. It was an 8am procedure time and we got there for 7am as we were told. I didn't have to wait too long. The doctor doing my bronch informed me that she had ordered two meds to be given intravenously that she usually uses on patients with kidney disease. These meds are supposed to help minimize the bleeding when biopsies are taken. I wasn't originally supposed to have biopsies but since my first bronch did not culture anything, I thought we needed as much data as possible to identify whats going on and I asked if we could do them. I was really hoping she would biopsy any nodules she saw. I'm not sure if she was able to or not. She was gong to take more biopsies than the 8 she did take but she said I as bleeding too much so they had to stop. I'm just glad she was able to get some. She said I had a lot of mucus in both lungs. I got my X-ray and it was really quick. I oddly remembered her talking to me and I even remembered getting the X-ray, usually I forget everything and ask my mom a hundred times what the doctor said. I slept from 10:30 to 2pm and I would have continued to sleep but I wanted to make sure I would be able to sleep at night. Results will take a few days to come in. I haven't been going to yoga classes still due to the fact that I have trouble breathing due to the lung infection and the fact that due to kidney disease, my belly has been distended with fluids.

    I did go for a few hikes in a large state forest yesterday with my sister and our friend. We walked a moderate trail through the woods and it was very pretty, but a little chilly at 55 degrees. Because there was a bit of uphill hiking I was huffing and puffing trying to catch my breath. It was about a mile long. Then we drove to a lake where there were four swans. We also saw lots of salamanders in the water. It was a gorgeous spot with lots of warm sun. We stayed there for a while. Next we walked a trail around a lake that didn't have as much lake as we were hoping to see. It was another mile trail. We had to look down a lot as there were tons of rocks in the trail. We did get to see several trees that were gnawed on by beavers and we saw the beavers' lodge that they had made out of fallen branches and dirt. That was the coolest part of the walk. We then were a bit hungry and my sister had made us delicious sandwiches and I was getting both hungry and thirsty. So we began driving some distance to the top of a mountain and we saw a scenic overlook and pulled over. Their were two picnic benches and we at our lunch there. After that we drove the rest of the way up, we walked a short distance to the edge of the mountain that had a beautiful view of the land, forest, and hills below. There were tons of lady bugs flying around and landing on us too. A perfect way to end our day. I should mention there were bathrooms at our various stops and I was able to pee a lot which is a plus, again that is due to kidney disease.

 

 

 

(Our Shadows)

 

 (Swan)

(Beavers at this tree)

 

(Beaver Lodge)

  

(More beaver trees)

The Nodule Saga Continues

 The Nodule Saga Continues

    Last Wednesday I got yet another Chest CT scan done. My coordinator called me with the results two days after. She said the films showed that some of my nodules had gone away while some new ones had appeared. They called it waxing and waning nodules on the report. She said we would need to do another bronch but we wouldn't do any biopsies. I thought this was a good idea as my right lung had been noisy since the previous Sunday. I was in yoga, just a simple restorative yoga class where you lay in different positions for several minutes at a time and I kept needing to cough or clear my throat almost every few minutes. It was embarrassing! I didn't want people to think I was sick with a cold or something contagious. My coordinator told me I would need to do some blood work before the bronch. I later thought to ask if a biopsy would help determine what was going on seeing as I did have a bronch already and it didn't really culture anything. So I emailed my coordinator and she said that they would only do a biopsy if there was a nodule that looked infected. I'm still not sure why a biopsy of a nodule that wasn't infected wouldn't be worth doing. I planned to ask the doctor doing my bronch right before the procedure. I was sent a date and I couldn't believe it! It was set for the fist appointment of the day on Monday. I had my mom drive me into the city at 6am as my appointment was for 7am. When I got there and gave my name, the receptionist looked at me funny and asked if I had a different last name.  Apparently he couldn't find my name because I go the date wrong! My procedure was for the following Monday! My mom was not very happy, and neither was I was my lung is kind of annoying me as the mucus continues to rattle and vibrate as I breathe. Thankfully we got home quickly and could go back to bed. At least my mom didn't have to miss work for that and thankfully the apt wasn't in the middle of the day. My mom also quickly forgave me.  I was wondering why I suddenly wouldn't need to get blood work done. I decided to get my blood work done today so it would be out of the way.

Siesta Key, FL Vacation

Siesta Key, FL Vacation 

 

    On Saturday, September 21, my father and I went to Siesta Key Florida. I was just about done with my IV's. I had one infusion left for the morning of the flight. I brought my IV ball in my bookbag along with my saline and heparin. We got through early and I infused my med before we got on the plane. I would later deaccess my port and pull out the needle after we landed. Having no sharps container, I took the needle back home with me to so I could properly dispose of it.

    The first three days were beautiful and the Gulf was as flat as a lake. My favorite thing to do is to go to the beach a half hour before sunset and watch the clouds and the sun. After the sun sets, I like to take a walk on the beach and just enjoy the quiet and the sound of the ocean waves. There was an unusual phenomenon present in the water  for the first few nights, where at night, the caps of the waves were lighting up blue due to the bioluminescent plankton in the water. It was quite a sight to see. On Sunday, I had my dad drop me off to the drum circle at the public beach. I stayed there for an hour, and after sunset, I began walking back to the condo. It's maybe a mile of beach walking. The sand at Siesta is a white, fine powdery quartz, and it gets pretty compact so it's pretty easy to walk on. We went to the beach every day for the first three days and we got pizza on the last of night. It was decent but Florida isn't really the best place for pizza. 

     On the fourth morning we had our coffee on the lanai like usual and I started looking through my phone. I kept seeing that the tropical depression that had been brewing was turning into a hurricane. Islands nearby had evacuation orders. The more I read the more I realized, it was most likely not safe to stay on the Key. Then, finally I read a few posts that said Siesta Key was under a mandatory evacuation. I kept telling my dad but he didn't seem to take it too seriously until he phoned someone from our condo's association who confirmed that indeed, we needed to evacuate. My father called my mother and she suggested we go to stay with her friend an hour and a half north of us in New Port Richie. She and her husband had no problem with that and so we showered, packed up our bags and the condo, and began our travels. We stayed with my mom's friends for 3 days. We know them pretty well as they used to live in the same town as us. They fed us and made us feel at home. The storm passed through the area there with little to no damage. Just a little bit of debris. Siesta Key had been a victim to the storm surge and most businesses, homes, and condos took on at least 3-5 feet of water in their first floors. We could not return to our condo and so we left for the airport on Saturday from our friends home. Thankfully our flight was not delayed. 

 

 (View from the lanai)

 

Lessons Learned

 Lessons Learned

 

    From my journey of living with Cystic Fibrosis thus far, I have learned many things. Among these are, deep empathy, compassion, being as non-judgmental as possible,  advocating for myself, listening to my body, speaking up for myself, taking care of my health, the importance of having a solid support system, the importance of listening to your intuition, the importance of having a spiritual practice, resiliency, perseverance, tenacity, appreciating the small things in life- not just the big things, an appreciation for life itself, the power of faith to move mountains, the power of mind over matter, that miracles are real, and that I’m stronger than I ever gave myself credit for, just to name a few. I have been very lucky along my path as well. I have met so many earth angels along the way, that have helped me in my times of need. This includes my family, so many nurses, doctors, techs, phlebotomists, therapists, you name it. It’s taken a village to keep me thriving and I’m grateful for everything and everyone I have encountered thus far. Though this is not my complete story, it is a pretty comprehensive view of the physical aspects of my journey with Cystic Fibrosis so far

    One thing I sort of left out of this story is the amount of times doctors didn’t listen to me.  I cannot stress this enough, you must find doctors that do no gaslight you and that listen to you as you know your body best. Even if it’s a transplant doctor that doesn’t listen to your needs and concerns, you must find a new one. Your health is your number one priority. Even if it takes 10 different doctors, don’t stop until you find one that takes you seriously and listens to your needs. It’s also very important to listen to your intuition as it has valuable information.

Uterine Polyp Removal and D&C

 Uterine Polyp Removal and D&C

 

    On July 11^th, about a week after the bronchoscopy, I would have the procedure.  It had to be done in the hospital OR as I was a more complex case due to the lung transplant and they wanted to make sure I could be easily taken care of in case of an emergency. My mom took me to the hospital as we needed to arrive by 12:30pm. My procedure was scheduled for 2:30. I got checked in quickly and did my urine test.  Then I got changed and had to wipe my body down with 6 separate medicated cloths. Then I put my gown and socks on. They swabbed each of my nostrils with two separate betadine swabs each. I never had that done before. They said it helps to prevent infection from being in the hospital. The procedure was delayed by 45 minutes. That’s really not too bad for such a late procedure. The room had been ready since I got to the triage at 1pm.  I’m not entirely sure what the hold up was. Anesthesia had seen me and I signed all the paperwork. They said I had to wait for my doctor to come but when she came, she said they told her the procedure was delayed. Perhaps there was some miscommunication I don’t know. In the meantime, a student came by and told me she would be watching the procedure. I asked if she would be doing an exam as I heard when you are having procedures or surgeries in teaching hospitals, they often let a team of people practice gynecologic exams on patients without their consent. She said she would just be watching, but I really didn’t like the sound of that. If it was almost any other procedure, I would be fine with it but I’d be in a compromising position and in a vulnerable state and I really didn’t like it. She said the doctor would talk to me and I’d need to sign a consent. The doctor did come in and talk to me and I thought she’d mention it or I’d see the form but I never did. As a nurse came to wheel me into the OR, I told her I did not consent to the student watching the procedure. She said she completely understood and told my doctor. When I got to the operating room, the doctor wasn’t there yet but the student was. Immediately, the nurse told her she had to leave and talk to my doctor. When my doctor came in, she explained it was perfectly fine that I didn’t want anyone watching and that was my right. They got me prepared and then administered the meds. When I came to, I was so tired, I could barely open my eyes. But whenever I’m recovering after a procedure I try to wake up as soon as I can. I don’t know why. My nurse saw me opening my eyes and took me to another room where I was given juice and a piece of poundcake. You needed to drink and eat before you could leave. You also needed to pee, and boy did I have to pee badly! It wasn’t long before I was discharged. I actually felt pretty good after the procedure. I had the mildest of cramps; barely noticeable. When I got home, I made sure to hydrate and eat.  My kidney needed to be flushed after having almost no fluids all day. That night I had trouble falling asleep. I felt wired. Actually, I felt amazing!  I had tons of energy. I wished I could always feel so energized. After a few hours, I fell asleep. I woke up early the next day and felt amazing still! I got up, showered, and went for a walk at the park. It was 9:30am when I finished the first lap and my nurse was coming over at 10am to flush my port. She’s usually a little late due to traffic, but last time she came a little early so I decided one lap would have to do. I took the slightly longer way home.  I decided to start my laundry and before I could, my nurse had arrived 15 minutes early. This energy followed me throughout the day. It was fantastic! I did decide not to go to gentle yoga even though it probably would’ve been fine. I didn’t want to stir anything up inside.

    I didn't get my period for about 5 weeks. When it came back, it came back with a vengeance. Once again, I was passing frequent, large clots. I grew concerned quickly and phoned the gynocologist's office. It was after hours but they picked up. They told me to come by and pick up some samples of birth control and and a script I could fill. So, I have been taking the birth control for now and all is well. It did seem to give me diarrhea which I remedied by adding iron to my daily meds. Iron is pretty constipating and I had been put on it a few months ago but stopped after only a few days due to how badly it can constipate me. Now, everything seems to be evened out and my bowel movements are normal.