CF Clinic

I had covid last month and my lung functions went down to 37%, from 41%. I had a mild case of covid. I had a cough and I basically slept for about 5 days. Not much more than that. I did have the antibody infusion and a weeks worth of prednisone for the chest tightness.

Today was my regular 3 month check up. My lung functions went back up to 40% / 1.12L FEV1. I have managed to lose 5 pounds, which is good. My lungs sounded good, no wheezing, at least when he listened to me. We discussed the mental health side effect of the Trikafta that I have been dealing with. It has been worse since Covid as well. I have more blah days than I would like. I made an appointment with my psych doctor to discuss my meds and a possible change in one of them. That appointment is in 2 weeks. Maybe with a med change my blah days will be less and I will have motivation. Summer is my favorite season because of the ability to be outside in the sunshine which usually helps my mood.

I go back in 3 months for a regular check up. I will have my yearly labs drawn at that time to check my vitamin levels, liver function and kidney function, among other things. They check my sputum culture every clinic visit to see what bugs I’m growing in my lungs. I am usually growing only pseudomonas. We only treat it if I am having symptoms of an exacerbation. That would be increased cough, drop in lung functions, more wheezing/tightness, fever (I rarely run a fever when sick though), fatigue, lack of exercise endurance, etc.

All in all it was a good visit. We did talk about adding Spiriva (inhaler) for my asthma if I feel like I need it later. I didn’t want to add it just yet. I’m going to try using my albuterol inhaler before I do the treadmill to see if that helps with the wheezing while I exercise but that is the only change.

Until next time…

Hawaii – Mom’s happy place

We recently got back from Hawaii (Honolulu, Oahu).  The purpose for the trip was to spread my mom’s ashes in her favorite place on earth.  She wanted to be in Hawaii forever and ever.  We chose to spread her ashes in front of Duke’s restaurant on Waikiki beach, mom’s favorite restaurant.  It was a very special time but also surreal and will forever be a memory in my heart. Continue reading

Waiting…

When you have a chronic illness waiting is part of life.  Waiting to get better, waiting/holding steady or waiting to die.  Yep, I said it.  It’s a part of my reality and when I have friends waiting for lungs and others who are not candidates for transplant or don’t want to go that route who are basically waiting to die.  Maybe you could call it “living to die.”  Whatever it may be, it is life. Continue reading

Thank you for all of my donors!

This is what a $500 battery for my POC (portable oxygen concentrator) looks like. Yep $500!!!! I have to have 2 of these for the trip to Hawaii. Per FAA regulations, you have to have 150% of battery life compared to your flight/layover time. I had to be approved by Delta to fly with my oxygen. Then they dropped the bomb that I needed 2 double batteries (a total of $1,000) OR a double battery and 2 single batteries ($500 + ($325×2) = $1,150). One double battery gives me about 8-8.5 hours at 2 liters. One single battery (which is what came with my POC) gives about 4-4.5 hours of 2 liters. Thank you to everyone who donated to the lung fund for allowing us the means to buy $1,000 worth of freaking batteries.

If you would like to donate we would greatly appreciated it.

You can donate to http://www.gofund.me/shannonigans or to http://www.paypal.me/shannonigans.

Thank you to you all for all of your love and support!!

Until next time….

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A bunch of jumbled thoughts

I hope I can write this and let it make sense because it is all jumbled in my head….  It feels like a game of ping pong with my thoughts in my head.  Hmmmm let me divide it into topics….hahahaha  Continue reading

Depression; It’s real

I received an article via email titled “Associations between adherence, depressive symptoms and health-related quality of life in young adults with cystic fibrosis.”  The first line of the article is the following, “Cystic Fibrosis (CF) is a life shortening disease, however prognosis has improved and the adults with cystic fibrosis live independent lives and balance the demands of work and family life with a significant treatment burden.  They administered 3 standardized questionnaires to 67 CF patients aged 18-30 years; Medication Adherence Scale, Major Depression Inventory and CF Questionnaire.  One third of the participants reported systems of depression. Health-related quality of life scores were especially low on vitality and treatment burden and symptoms of depression were associated with low health-related quality of life.  High depression symptoms scores were associated with low adherence.  All of that mumbo jumbo means that depression and CF go hand in hand.  The higher the rate of depression, the lower rate of adherence of treatments and meds, etc. and vice versa.   Continue reading

CF Clinic/Follow up from the hospital

Today’s clinic visit was a follow up from my last admission.  Ya know, the one where I kept coughing up blood, yeah that one.  The visit was short and “sweet” because I had so many other things I had to get done today so I put them on a deadline of when I needed to be out of there.  hahaha   Continue reading

Determination letter received

I received my letter of determination from my lung transplant evaluation….

  • “This letter is in regards to your recent lung transplant evaluation at Barnes-Jewish Hospital in St. Louis, MO.  Based on the results of you evaluation, we feel like you may be a suitable candidate for lung transplant in our program.  However, there are some program requirements that must be met before you can be listed with the United Network of Organ Sharing at our hospital.  Therefore, you have not been listed with the UNOS at this time.  Attached is a letter from your Nurse Coordinator outlining the requirements that must be successfully completed prior to listing for lung transplant.”

Continue reading