FAQ's about BAC and Lung Transplant (patients point of view)

This is a living blog post that will be re-visited frequently as I remember new stuff to add, subtract, and other transplant/cancer hommies send me info.

Disclaimer: These are thoughts and suggestions provided by myself and others that have experienced cancer (i.e. BAC) and also undergone organ transplantation (i.e. lung transplant).


BAC (Lung Cancer) FAQ's:

1. BAC (Bronchioloalveolar Carcinoma) suck!!!
2. BAC is a type of lung cancer often found in non-smokers
3. For many diagnosed with BAC there is no way of EVER knowing how the carcinoma developed, since it is often diagnosed at such a late stage. (for me I was diagnosed at stage 4)
4. When you are diagnosed with cancer or other life threatening conditions you need to study and read medical white papers so the highly lettered doctors don't try to talk over your head. An example of words they might use that are suggestive until you really understand the true medical meaning as it applies to your condition are stage 4, metastasized, spread... I was stage 4 b/c my BAC non-small cell cancer had spread or metastasized to both lungs, in this case you don't want it to spread but the spreading was okay b/c it was contained in my lungs and I had no lymph node involvement.
5. Chemo (chemotherapy) is overrated as far as making you deathly ill. Don't get me wrong it is unpleasant but you more than likely won't be vomiting bucks or be totally out of it. The new Chemo is often time targeted for your specific cancer type based on its protein signature which means it focus on a specific area of the body. You will also be given pre-meds before chemo starts to help with nausea, you will also be given plenty of snacks during your chemo infusion (mmm MMMM mmm snacks)
6. Keep hard candy on hand and suck on it when your IV is flushed with Saline and Heparin as they will leave a nasty taste in your mouth and the candy will of-set that taste.
7. If you can get a port inserted in your chest for chemo, and blood draws it will make life much simpler; your veins will start to get worn out from the chemo eventually and the port again will make life simpler.
8. Flush your port at least every three weeks or as the doctor orders.
9. Eat what you can the newer chemo does not really alter the taste of food contrary to popular opinion.
10. Stay active work-out, walk, swim, hit the whirl pool, and get a massage as these activities help push the chemo (Ratt poison) through your system and will help with the joint/muscle pain you are going to experience.
    

Transplant FAQ's:

1. TRANSPLANT IS NOT A CURE; you are trading a terminal condition for MANY other conditions that can be monitored through life style changes (i.e. exercise, diet) and medication.
2. Some conditions that one can expect with lung transplant are; diabetes, osteoporosis, weight fluctuation, muscle mass loss, mood swings, fatigue, various respiratory viruses..... BUT YOU ARE ALIVE keep that in mind.
3. Your children / or younger relatives will be your greatest inspiration to fight on and do well with the transplant but they can also put you in the hospital as they will unknowingly give you little presents (germs and bugs) they get from daycare.
4. YES, they transplant was painful the first two days hurt like *&^% *&^%; it helps to be in shape, work on your abs, back upper and lower, possibly learn some yoga or stretching before hand to concentrate on your posture, work on your legs too as the meds will quickly eat away your leg muscles.
5. Wear your mask and get T-shirts made up to answer the ignorant questions you will get from people wondering why you have on the mask.
6. It will probably take a good year to recover from the transplant.
7. I started back to work after 6 months but that might have been to soon b/c a week after going back to work I was back in the hospital for two weeks with CMV
8. Watch your sugar intake after transplant b/c the high doses of steroids will alter your blood chemistry and you will soon develop steroid induced diabetes.
9. The diabetic stomach shoots don't hurt remember all you have been through they are a piece of cake.
10. Get your port removed if it is accessed alot it could be a source of infection; it will be accessed alot b/c you will have blood drawn several times a week. Ask for a picc line so you don't have to get stuck so much.
11. While out of work recovering find something to do to stimulate your mind as you are not going to sleep much because the medicine won't allow it.
12. Check the $4 med list that Wal-mart has b/c some of the meds you will need can be purchased there rather than paying an arm and a leg at your local chain pharmacy.

More bullet points to come as I remeber more stuff to add (prednisone brain)