Just Call Me Chanel MD - Health Update

This last week, I saw my Pulmonologist and performed my routine PFT (pulmonary function test). Unlike most patents, I perform this test every 2-3 months, instead of every 6, as my lungs have been relatively unstable in their values since summer. A PFT is preformed in a small glass box with what looks like a snorkel jetting out at you. You are to breathe into the snorkel using different techniques to asses your body's pulmonary abilities. My results tend to fluctuate some, as most patients do, but lately they have been taking great bounds in the wrong direction. Luckily, I stayed stable in my results this round. While we always hope for an improvement, I'll take (relatively) the same results as my previous test over tanking any day! The Cytoxan should yield better PFT results in the upcoming months if the drug is properly doing its job. So hopefully by the next test we will see some improvements!

I started home infusions this last week as well. I now have a nurse arrive to my home once a week to access my port so I can run my own IV fluids throughout the week! It is incredibly convenient, and kind of fun! I feel pretty accomplished being able to run my own medical equipment and provide myself fluids. I even get to de-access my own Port! Yup, that's right! I get to remove that giant needle from my chest all on my own! ;) It is so awesome! So far everything has gone extremely smooth, and I have met some great nurses already. My house looks like a little hospital with all my medical equipment between the central line, feeding tube, and oxygen stuff; our fridge is even full of big saline bags! lol My poor husband! So if you see me with a device sticking out of my chest, that's just my new normal. My port will be accessed 4 days a week from now on.

After a month of waiting, I finally had my appointment to have CPAP training. There was some kind of mix-up with the orders so the home health care company didn't receive them from my doctor till last week. Turns out the home health care headquarters are only about 15 minutes from my home, which is massively convenient. I arrived and was whisked back to try on masks, and trail my device. The CPAP I received is brand new on the market, and extremely quiet! It's so small it doesn't even take up half my mini nightstand. We had some trouble finding a mask since my face has some very distinct features, but eventually found a full face mask that fit well. So far sleeping with it has been a breeze, besides for the fact that it leaves big hives on my face when I awake. I think my extremely sensitive skin is very unhappy to have something suctioned to it for 6-8 hours. I will probably call the company later today to see if that is normal your first few nights, or if it's just over sensitive me. I will trial the CPAP for 30 days and then meet up with my doctor to decide if the device is working or not. Due to my weakened diaphragm we were unsure if I would need a BIPAP or not. I am having a bit of a hard time breathing out with the continuous positive pressure since I only have about 20% use of my diaphragm. The BIPAP however would breathe in and out for me. So I guess I will find out if I am switching when I see my Sleep Pulmonologist at the end of January.

(Gross alert! Skip paragraph if you don't like bodily fluids! lol) Friday I woke up in some discomfort, feeling a bit nauseous and bloated. I noticed my feeding tube had become looser than normal so I checked the ml amount that typical filled my anchoring balloon. Where there should have been 15ml, there was only 1ml. I quickly filled the balloon back up only to have water, and puss gush out of my tract that holds the tube in place. Figuring the balloon had ruptured in my sleep I called the doc who wanted me to come in and be seen. Typically I would have just swapped the tube out myself but, since there was a good amount of puss, and pain, I was asked to not do the procedure myself until I was evaluated. Once I arrived to the physicians office they sent me straight down to the Emergency Department. Figuring I had an abscess, we ran CT scans, and x-rays attempting to find the origin of the infection now oozing out of my stoma. Unable to locate anything highly abnormal after a long 12 hours in the ED, we decided to remove the current tube and place a fresh one. I went to pull out the old tube and 'who only knows what' came rushing out! Yuck! Luckily, this event pretty much explained the entire situation. When my balloon ruptured the night before all that liquid, and the now free floating stomach acid, had moved into my tract, leaving it caught between my stomach, and abdomen wall. Yes -- it is as painful as it sounds. In turn the tract become aggravated and pussy, mimicking the look of an infection. It was a rough night filled with pain killers, nausea meds, and bodily fluids that no one should see escape a hole in their body. lol Once the new tube was in place, and the extra nasty fluids had been drained, I immediately started to improve. I will be a bit sore for a while but, no major injury, or infection ensued. As a funny side note, all the physicians in the ED were surprised when they found out I remove, and place my own tubes. (Probably a little relieved as well! lol) The look on their faces were priceless when I yanked that popped balloon out, then handed it to the one standing closest to me; he particularly looked really grossed out actually! haha I don't blame them though, they weren't GI doctors, so they probably don't see that everyday! Just call me Chanel MD ;)

Today I did something I haven't done in over 5 years, performed. Way back before illness overthrew my life, I was a classical vocal performer; music was my world. I had an almost full ride scholarship to a wonderful college, took part in multiple vocal competitions (which I normally won), and performed on stages for hundreds of people. There was no rush that quite matched you and a microphone staring out into a dark venue knowing everyone attending was listening to you. Well, Scleroderma stole that voice from me, the one that opened doors to my world. Thick fibrosis now fills my vocal chords and lungs, and my diaphragm has but a measly function; it is simply no body for a singer. Due to this change in my voice I was too ashamed to sing over the last many years. I wanted people to remember me as my old voice: the one that brought tears to their eyes, not laughter. The last few weeks I have been mulling over in my mind the joy that performing gave me, the rush and excitement it brought to my life. I missed hearing the last note of my favorite aria echo in a performance hall. I started to think about all the posts I have written about accepting ones new limitations when you find yourself stricken by illness; all the posts I wrote about doing what makes you happy, and realized -- I wasn't taking my own advice. No, my voice is not the award winning Soprano it used to be, but performing still brings that thrill to my heart, so why not? This is me, this is who I am now, and I must accept that. Today I sang "Oh Holy Night" for my church's Christmas program, and it was the most fun I have had in years! I may not have been on pitch at all times, and I may have cracked on every high note, but that excitement of performing was still there! :)

Tuesday I have my third round of Cytoxan so, if you don't hear from me for a little bit, that's why! I hope everyone has a fantastic holiday! Merry Christmas and a Happy New Year! ...Though honestly the new year is never very exciting for chronic illness patients as our insurance deductible normally restarts! lol As a little gift to my readers, here is the most epic Santa picture ever taken! ;) Feeding tubes, central lines, oxygen tank, bald head, and all!

My best friend and I may have frightened Santa!