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)