Please other transplant patients, don't use this as a medical reference. If your doctor suggests something else follow their instructions. I am putting this up to help people understand why I can or can't do something. Some of these questions do apply to all transplant patients, but some are targeted specifically at me. Also some of these are recommended by my center and not others. Every center has different rules and regulations.
1. What is the first defense
preventing infection?
Washing hands
2.
What are other defenses against infection?
Hand sanitizers, wearing a mask, using precaution at events
3.
What are your immuosuppressive medications?
Cellcept, cyclosporine, and prednisone
4.
When do you have to wear your mask?
Crowded and confined places, at the hospital. (Hospitals are full
of germs so it is very important to wear it there.)
5. Where can you go swimming after transplant?
In outdoor pools,
salt water, only fresh water that is fast moving (Water that is standing still
is a perfect breeding ground for bacteria.)
6. Which outdoor activities are
discouraged after transplant?
Gardening and yard
work. (This is discouraged because there is Pseudomonas in moist dirt.
Due to the decreased immune system, the body can't fight off this
infection so it is best to stay away from these activities.)
7. What fruit interacts with your immunosuppressive
medications?
Grapefruit and
pomegranate
8. Is it encouraged to eat a buffet
after transplant?
No (Buffets are
full of germs. For one thing it is self serve and most people don't
handle food safely. This can result in cross contamination. The
biggest thing with buffets however is proper temperature maintenance.
Food that is supposed to stay hot should remain above 140° and food that
should stay cold should remain under 40°. Anything between these two
temperatures is when bacteria grow and multiply quickly. At a buffet
it is really hard to maintain safe temperatures.)
9. How will you know when it is OK
to eat fresh fruits and vegetables?
Doctor will tell
us. (The doctor is monitoring the immune system through blood draws and
they will say when it is safer to consume these foods. Typically it is 3
months for thick skinned fruits like watermelon, pineapple. 6 months for
medium skinned like apples and pears and 12 months for thin skinned like
berries.)
10. Neoral (cyclosporine) levels are drawn how many hours
after the last dose?
12 hours.
(This is done to make sure the levels are high enough to be therapeutic,
but low enough so that the medication is not damaging the kidneys.)
11. Is it all right to double up on
medication if a dose is missed?
No
(Medication can be taken up to 2 hours late. After that skip the
dose)
12. If you will be having dental
work, what do you need to do?
Call doctor and be
put on antibiotics. (This is because mouths are very dirty and have a lot
of bacteria. When having teeth cleaned it is easy for bacteria to get
into the blood stream.)
Spirometry Incentive Spirometry
Track warning signs of rejection. (Peak flows are taken by blowing into a peak flow meter as fast as possible, spirometry, or inhaling to see how much air can go into the lungs, insentive spirometry. If the numbers are decreasing this might be a sign of rejection.)
14. It's ok to disregard a drop in peak flows?
No
15. Are you permitted to be in
contact with a child who has recently received a live vaccine?
No (The flu shot
vaccine is a dead vaccine, however the nasal flu vaccine is live.)
16. How will you know when it is ok
to drink alcohol?
It is never ok to
drink alcohol. (I am on a lot of medications. Some medications
might react with the alcohol, but most importantly my body has a lot of
medication to clean out and alcohol will only put more strain on my liver.)
17. What are the three tests you
must have at every clinic?
1. Blood
work (This is done to check cyclosporine levels, kidney function, blood glucose
levels,
magnesium levels, among other things.)
2. PFT's
(These are breathing tests)
3. x-ray
(This will not be every visit. As time goes by x-rays will be limited.
I am still young and don't need to be exposed to radiation unless
necessary.)
18. How often will broncoscopies be
performed?
Four will be done
in the first year; 6 weeks, 12 weeks, 6 months and 12 months. After that,
once a year. (This is the minimum. More may be done due to certain
circumstances.)
19. Do you keep your primary doctor
after transplant?
Yes
20. Who is primarily responsible for
your medical management?
My pulmologist
from lung transplant, Dr. Shah
21. You must call your transplant
coordinator:
a) If you
have a sore throat? Yes
b) If you
have a temperature greater than 100°? Yes
c) If you
have a productive cough? Yes
22. When is it ok to eat sushi?
Never (Sushi is
raw fish. I can never eat this again.)
23. Which of these chores can you
do?
a) Vacuum rugs? No (When
vacuuming things that have settled in the rugs are brought into the air.)
b)
Clean mold? No
c)
Bathe the kids? No
d)
Change the pool chemicals? No
24. What cheeses from the local deli
can't you eat?
Any cheese that is
not pasteurized or cheese that is cut on the slicer. (The slicer is not
clean so it is recommended to not get deli meat or cheeses from the deli.
It is safer to get the stuff that is packaged.)
25. How would you reach out to your
donor family?
Write a letter to
UNOS reaching out to the family. This letter is given to the coordinator
and she will give it to UNOS. The donor family is then given the letter
from UNOS and can decide to reach out if they want to.
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