Post Transplant Life/Regime


I take Azathioprine, Program (FK) and Prednisalone steroids. Anti-Rejection are your most important meds. It's vital you don't miss these meds. It's what is suppressing your immune system enough to prevent rejection taking over your transplanted organs. They keep a check on your anti-rejection levels by taking blood samples. These samples are taken fairly regularly until you reach a stable level, then you'll be checked less frequently. It can be a struggle to find a good balance for a while due to a number of different factors. This is completely normal. Your body is healing and getting used to what will be the biggest shock to your system.

Prednisalone Steroids



I have taken Creon enzymes since i was 13 months old and first diagnosed with Cystic Fibrosis. This is because the mutant gene that causes Cystic Fibrosis not only affects your lungs but it can affect your pancreas, digestive system, heart and liver. It affects your pancreas by disabling a natural occurrence where when food is eaten, enzymes are released that allow your body to take the nutrients needed from the food you eat and turn that into energy, fats, salts, vitamins and other things. This can send your digestive system loopy! It can swing from one extreme to the next! Constipation can be a regular thing for people with Cystic Fibrosis and in some cases, this can become a serious bowel blockage that needs urgent medical assistance and is unbelievably painful. It can quickly lead to needing surgery! On the other hand, it can give you the runs! Meaning a toilet becomes your best friend along with agonising stomach pains.

Stool Softner & Laxatives:
Since a scarily serious bowel obstruction i had in 2013, i have since been on some medication to try to help prevent that happening again. Sodium Decussate is a stool softener and that basically does exactly as it says on the tin. Softening the poop helps prevent constipation which therefore helps prevent a bowel blockage which then turns into a horrific bowel obstruction! Senna is a laxative that i use to help keep things moving regularly which again helps to prevent constipation. Together they make a beautiful couple and my digestive system continues to remain in working order i am happy to report!

Sodium Docusate


Vitamins are a group of tablets that are often apart of a Cystic Fibrosis patients daily medication. This is due to the fact that the vast majority of us are unable to digest our food properly without enzymes and therefore, unable to take out essential nutrients from the food you're eating. So they prescribe a variety of vitamins to help supplement any deficiencies. I'm currently on; Viatmins BPC which is a combination of vitamins, Cholecalciferol is a vitamin D supplement but it's very strong and therefore only taken once a week for me and finally, i take Calci-chew which is a calcium salt used to supplement calcium in the diet.
Before transplant and for a little while after i was using an overnight feed to help gain much needed calories. Before transplant i was on this all day 24/7 because i was hardly eating anything and it was my main source of nutrition. After transplant, i fed for the first month to maintain weight whilst my body recovered but my appetite got bigger and better and i now no longer use the feed as i am gaining weight successfully on my own, this is a huge achievement for me as i have battled to gain weight for many years now.
I still have my button, which gives me access to using the feed again if it is needed in the future. Some people post transplant still need the help of supplements such as feed or milkshakes etc so they still use a peg, button or NG tube to get the extra nutrients.

Nutrison Concentrated (Overnight Feed)


Proton Pump Inhibitors:
Yes, i did just google which group of drugs this capsule belongs to! Have you ever had acid reflux? This can cause heartburn or indigestion symptoms. Well 9 years ago, i started having a horrible and regular heart burn which would bring tears to my eyes. I never thought anything of it until i happened to mention it in a clinic appointment back in Boothall Childrens Hospital and they told me it sounded like i had Gastro-Esophageal reflux disease or in lamas terms, Acid Reflux. I was then whisked away to have an acid reflux test performed. After a long, emotional, sickening afternoon, they finally managed to pass a little tube down my nose, down my throat and sitting in my stomach. This tube would measure whether acid was escaping from my stomach and making it's way up to wind pipe which would be dangerously capable of getting into my lungs. I was useless at having this performed because my gag reflex is on point and i kept bringing the tube back up so it would literally go up my nose and back out of my mouth, horrible at 12 year old, let me assure you! Anyway i extremly reluctantly managed to get through a full 24 hours with this tube in, including a trip to A&E begging a doctor to get it out of me but he managed to convince me to continue. The results were in and it was true i did have this acid reflux and i was started on a drug called Omeprazole. Now post transplant, my omeprazole has been increased as the anti rejection meds can cause your stomach to become a little more upset and temperamental and acid escaping and taking a little holiday in these new lungs is a MASSIVE no no!!


Other "Anti-" drugs:
Antibiotics have been a major part of my life as they helped me get through many infections and save my life. Post transplant i have been on both IV antibiotics and oral antibiotics. I'm currently on IV (Through a drip) antibiotics and i was on a high dose of oral antibiotics for a few months but that has been steadily reduced and i now take them on alternate days. Now my immune system is suppressed, my body is weaker and so antibiotics help give my body that extra little amour against bacteria wanting to invade! They're vital.
Anti-viral's were something i had never heard of until transplant and that antiviral was Valganciclovir.
As far as i am aware, this is to prevent a Virus called CMV from becoming active and making you feel very, very poorly indeed. I don't think you ever get rid of it once it has become active in your system as it is very resistant to everything. Valganciclovir is another vital tablet for me.
Anti-fungal was also a new type of drug for me post transplant. I'm currently on oral Itraconazole. I would prefer capsules or tablets as i am absolutely useless at tolerating oral solutions. I just bring them straight back up again and i'm not sure why but it's the way it has been since i was very young. Luckily for me, i still have my button inserted into my stomach so i can flush the oral medication straight into my tummy without tasting, swollowing or throwing it back up! YAY!
Anyway, pretty self explanatory again. Anti-fungals are used to help prevent or treat fungal infections and fungal infections are not what i want for my lungs!

Itraconazole (Anti-Fungal)

Septrin (Antibiotic)

Valganciclovir (Anti-Viral)

It's not uncommon for people with Cystic Fibrosis to develop diabetes. Sometimes, this can be controlled by diet or treated with insulin. I was diagnosed with Cystic Fibrosis related diabetes when i was 10 years old and was instantly places on insulin. Diabetes in Cystic Fibrosis is a category all on itself. It's not necessarily type 1 or type 2. It is very special and frustrating!! Our pancreas does produce insulin... it's just not enough and high blood sugars thrive or infection and infection thrives of high blood sugar so it's important that our diabetes is under control.
I was lucky enough to have a very mild case for the majority of my childhood and into adulthood, needing very little insulin and able to drink and eat as much sugar as i liked.
Then in 2014 i began needing insulin a lot more. I went from needing a long acting insulin once a day (which covered me for the full 24 hours) to needing long lasting insulin twice a day and also fast acting insulin before eating anything.
This helped for a little while but suddenly it rapidly changed and i was needing more and more but it was getting less and less controlled. It got to a stage where nothing we did helped and no amount of insulin improved my condition because it was a guessing game. So my CF & diabetes team decided it was time to try an insulin pump. One of my best decisions made! In November 2014 i began using an omnipod insulin pump and it has changed my life. It's made things to much easier, it's made my control brilliant and it's much less time consuming for me. The level they regularly check in diabetes patients is called HBA1C and mine has come down very smoothly and nicely thanks to the insulin pump.

Nebs have been a part of my life since i can remember. Technology has come a long way and they now have tiny portable devices that you can inhale your medication through within a few minutes! AMAZING! When i first did nebs as a child, you had to stick a massive white tube out of the window to prevent the household inhaling the medication too! It wasn't portable, it took up to 15-30 minutes and it was noisy and bulky. Now i take two different antibiotic nebulisers via a device called an E-Flow and it takes 2-3 minutes. I take Tobi nebs one month and then Colomycin nebs on the alternate month. I also have a neb called ipatropium which i use just before taking the antibiotic neb to open my airways and prevent a spasm caused by the other nebs. I'm currently also using hypertonic nebulisers which loosing sputum and make it easier for me to remove what's lingering in my airways and lungs.

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1 comment:

  1. Hey Soph x Mad as this sounds, don't often think about the meds we take on a daily basis....obviously am not on some of the ones you are, but still had me mulling things over a little. I love your blog and I am one of your biggest fans....get you, yoiu little Rock star :-P. Love watching your progress on here & FB. Much luv as ever, Lou (Wakefield)