Tag Archives: transplant

Shannon, how are you feeling NOW?

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My CF nurse called today to check in and see if I needed another week of IV antibiotics. I told her I’m as good as think I’ll get and that another week of IVs won’t do anything. My doctor wanted me to do home spirometry (lung functions) and to send it in so he can see it. My FEV1 was 32%! So I’m back up to my baseline between 30-35%. My last days dose of IVs will be my 10pm dose tomorrow night. I can then deaccess my port and be free!

I’m not as tight or wheezy as even I went into the hospital. I was up at 4am wheezing so I did a breathing treatment and stayed up until my 6am dose of IVs. I’m also not as short of breath so I’ll take it. I’ve been able to do more around the house, like cleaning. I do still have to take breaks like I usually do but I’m about to push through.

I’ve had some people ask about lung transplant and where that stands with having my lung function having been down to 21%. I’m still not ready for transplant yet. To be reevaluated for transplant, my lung functions would have to be 29% or under (steadily) along with other things like being resistant to IV antibiotics meaning they are having no effect on my lungs. IV antibiotics already are not as effective as they used to be when I was younger. I don’t bounce back like I used to. There are still different antibiotic combos they they can try for me with the hope they will help. We aren’t out of options quite yet.

Like I said before, you learn to adapt to lower lung function as it slowly goes down. The reason I noticed such a difference in my breathing when I went to the hospital was because it had dropped like 12% rather quickly. Yes, new lungs seem like a solution but there’s more to it than just getting new lungs. It’s a lot of hard work getting listed and enduring transplant. I will cross that bridge when the time comes. I’m still not mentally ready for transplant. It is so scary! It’s a journey for sure. Yes, I would get ready real quick if I declined quickly and had to be listed sooner than I would like. There are a lot of moving parts that have to be figured out when I do list for transplant. We will figure it all out in due time though. I know I have a lot of support with my family and friends. I will make it!

I have a telehealth appointment with my CF doctor on Friday the 20th for a check up after finishing IVs. I will do lung functions again and send them in the day before my appointment for his reference. I’ll update after that appointment.

Oh, and I got word that I was approved for Dupixent, the asthma medicine. I have an appointment with the allergy doc/nurse on the 18th to do my first injection in the office so they can teach me how to do it. The initial dose is 2 injections and then it’s 1 injection every 2 weeks. It’s in a pen injection like an epi pen is. I’m really hoping this helps my asthma and I won’t get as short of breath. We shall see.

Until next time…

Pre transplant check up

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I have been on a bit of a whirlwind road trip. I started off my road trip visiting my friend that lives outside of Chicago for a few days. Next up was the drive to St. Louis for my transplant clinic check up. My check up was good. They drew 14 vials of blood, took a chest X-ray and I saw the doctor. I’m doing well, sounded good. I didn’t have to do lung functions because I was able to send my last ones I did at my clinic. I am scheduled to come back in 6 months.

The last bit of my road trip was heading east to Kansas City to see my family for a few days. I will then head back home on Monday. All in all it was a good check up and has been a good road trip, except for the boring driving part. Haha

Until next time…

Transplant Talk: Sinking in

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Now that I am actually getting to the point of listing it is sinking in how sick I really am.  I am sleeping about 12-15 hours a day and even more if I take a nap.  You may say how is that possible or wonder why I am sleeping so much.  My body is very worn out just from working to breathe and then there is the coughing on top of that.  My body is sore from all the coughing I do. Continue reading →

(Pre) Transplant Appointments

Posted in Blog Life, Health update, Transplant Talk by

I arrived to St. Louis Sunday evening.  My sister joined me early Monday morning since she was coming from Kansas City and me from Knoxville, TN.  I must have someone (caretaker) with me at all my transplant appointments, it’s part of the deal.  Luckily I have people to rotate, haha. Continue reading →

I Remember When

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I remember when I could do a lot of things that I am unable to do now.  Unfortunately, that is only going to get worse as time goes on and my lungs get worse.  It is a major mind trip when you want to do things but your body won’t let you or your mind won’t let you because it knows your body can’t.  If that makes sense. Continue reading →

CF Clinic Day

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The first bit of news is that my dad is here to visit for a week…yay!!!  He was able to be here for my CF clinic day so he was able to meet the team, or at least most of them.  Everyone that came in my room seemed to be surprised seeing him and not my husband. hahaha

Today was a good clinic day.  First of all, I actually made it to a check up appointment and I didn’t have to make an appointment before for being sick.  I have been having good days and bad days as per my normal so I was curious how my appointment would go today.   Continue reading →

Transplant Evaluation week is coming

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We are heading out to St. Louis to Barnes Jewish Hospital for the week of transplant evaluation.  With that comes a lot of emotions as you can imagine.  I am excited, nervous, anxious and ready to breathe.  Not that they are going to fix me right up while we are there but I’m ready to get some answers and find out where I am on the transplant spectrum.   Continue reading →

CF Awareness Month: Cure? and transplant

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There is no cure for CF. There has been leaps and bounds in research for medicines to help treat CF. They have made headway in research for a cure but nothing solid. The saying, “the cure is right around the corner!” has been around for many many years. My parents heard it when I was diagnosed 34 years ago and “they” (CFF, docs, etc.) are still saying it today. With that said, we are closer to a cure than we were 34 years ago. I don’t think I will see a cure in my lifetime but who knows, someone may surprise me with that. If I can live my life as an example and do my part for research then that is all that matters for the generations behind me. They are doing research with stem cells in hopes of helping correct the defective CF gene, which is promising. Continue reading →

Chapter 2 – A Day in the Life

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“Playing the Cards Life has Dealt”

My day begins by doing a breathing treatment along with airway clearance.  I used the ThAIRapy Vest up until July of 2010.  I received the Respritech-Smart Incourage Vest in July of 2010.  They are both a device and system for clearing excess mucus from lung airways (bronchi and bronchioles).  It uses a compressor to inflate and deflate the vest rhythmically at timed intervals and thus imposes high frequency chest wall oscillations that are transferred to the lungs. These oscillations thin thixotropic airway mucus, facilitating its removal by coughing.

 (Source: http://en.wikipedia.org/wiki/ThAIRapy_Vest)

I use a nebulizer to inhale my aerosolized medications.  I do breathing treatments four times a day.  I like to call it “smoking my pipe” and doing the “shake shake.”  Breathing treatments take anywhere from fifteen to thirty minutes, possibly longer depending on what medicines I am inhaling.

Postural drainage and chest percussion (PD & P) also called postural drainage and clapping (PD & C) is another airway clearance technique.  We like to call clapping, “beating,” no not in a bad way but that is basically what is happening when doing PD & C.  There a few other ways to do airway clearance such as; the Flutter Valve, Accapella, Incentive Spirometer, percussor (“vibrator”), Intrapulmonary Percussive Ventilation (IPV), The Frequencer, breathing and coughing exercises.  The goal of airway clearance is to loosen up the secretions in the lungs and make them easier to cough out.

Continue reading →