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Our Group on Transplant Friends.com Transplant No-No's

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from our member MakHostess Rise'Hostess Rise'01-01-11  09:40 am
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Hostess Risa
Board Administrator
Username: Risa

Post Number: 9611
Registered: 05-2003
Posted on Thursday, July 09, 2009 - 06:20 am:   Edit Post Delete Post Print Post

Hi all,

We area always talking about Do's and Don'ts pre and post transplant on transplant buddies. Let us mention briefly some Do's and Don'ts that you have already shared before. I want to take this thread after a few weeks and compile this into an article for our Resource page here.

Remember anything you can remember that you already shared, if you have to peak at something you wrote (copy and paste) whatever it is, please share it all over again in this thread.

We have SO many intelligent members. I need to create a permanent list.

Many Thanks!
Risa@transplantbuddies.org
CF- diagnosed at 2 years old
Florida, USA
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

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Hostess Rise
Board Administrator
Username: Risa

Post Number: 9615
Registered: 05-2003
Posted on Thursday, July 09, 2009 - 06:36 am:   Edit Post Delete Post Print Post

Always consult your doctor about nutritional supplementation that you are interested in taking.

Read all labels on canned foods. Check Sodium content.

Herbs are known to be contraindicated when taking transplant drugs.
transplantbuddies@gmail.com
CF- diagnosed at 2 years old
Florida, USA
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

Visit Transplant Buddies on FaceBook and Myspace

TransplantBuddies Sponsors
http://www.transplantbuddies.org/html/thanks.php
Joe Berry
Member
Username: Joe910

Post Number: 84
Registered: 08-2008
Posted on Thursday, July 09, 2009 - 10:03 am:   Edit Post Delete Post Print Post

Watch sugar intake

Wear gloves when gardening

Wash hands frequently

No grapefruit
Joe Berry, Peoria, IL USA
Diagnosed with PSC and UC in 1990
Liver Transplant 10-17-2007
Northwestern Memorial, Chicago, IL
rose
Member
Username: Rose

Post Number: 218
Registered: 07-2006
Posted on Thursday, July 09, 2009 - 10:24 am:   Edit Post Delete Post Print Post

Many of you know I grow roses and love to garden. Well, on Sunday, while pruning some long overgrown bushes, I ended up with a tiny little cut on my thumb, even while wearing rubber gloves.
Within a few minutes, I was in pain and the thumb swelled up and became red. I checked the area for a thorn, soaked in warm water, and put some hydrogen peroxide on it.
The swelling got much worse and a small fever developed. We called the doctor at 9pm. He said to take 500mg of Amoxicillan and go in for a check up in the morning.
My hand swelled up to twice the normal size!
Rose thorns are magnets for all kinds of fungus and bacteria so a cut or prick needs to be treated immediately. There have been deaths because the bacteria can go to the lymphatic system and spread rapidly.
I am taking 500mg of Amoxicillan four times a day and getting better but hope that my digestive system will not suffer from so much antibiotics. That may be another story.
take care out there.....

rose
Eternal gratitude to my donor. She gave 5 organs.
a rose, is a rose, is a rose.....
Jay Lackritz
Member
Username: Jay_ny

Post Number: 177
Registered: 01-2007
Posted on Thursday, July 09, 2009 - 11:27 am:   Edit Post Delete Post Print Post

These are some warnings and cautions from my tx center, CUMC
For more detail on Do's and Don'ts, see the Lung Transplantation Patient Guide:
http://www.columbiasurgery.org/pat/lungtx/guide.html

There are also some nice guides for each individual organ at the OHSU Transplant Center:
http://www.ohsu.edu/transplant/lifeaftr.html
See the links at the bottom of the page for each organ to download patient guides

Animals
No birds should be kept in your house, as their droppings may cause lung infection. Cats should be declawed, and you may not change their litter.
Please consult your doctor if you have any other pets or exotic animals.

Driving After Lung Transplant Surgery
You will not be able to drive for about 4 weeks after your transplant. The medications we prescribe can cause tremors, weakness, and blurred vision, and these side effects, often worse in the first few months, make handling a car difficult. Therefore, we recommend that you abstain from driving until you are cleared to do so by the transplant team.

Skin Cancer
Your risk of developing skin cancer increases with your length of time after transplant. Skin cancers are ten times more common in transplant patients than among the general population. Therefore, it is essential that you limit your exposure to the sun, and that you protect yourself with proper clothing and sunscreens when you are outside.

Alcohol
Do NOT drink alcoholic beverages. This includes non-alcoholic beers, which still contain small amounts of alcohol. Alcohol is metabolized (broken down) by the liver and causes damage which can lead to liver failure. Imuran, cyclosporine, and Bactrim are also metabolized in the liver. Combining these medications with alcohol can seriously harm your liver.

General Dietary Recommendations

* No grapefruits or grapefruit juice or pomegranates or pomegranate juice as this may interfere with medications.
* No uncooked food such as sushi or meat. Meat should be cooked well done.
* Raw vegetables need to be washed and scrubbed by someone else other than you. Raw fruits and vegetables, especially root vegetables, may contain fungus. Fungus may be inhaled and cause lung infection.
* Avoid raw fruits and vegetables for the first 3 months after transplant
* No salads at public salad bars to avoid infection from the salad and from the other diners.
* Avoid semisoft cheeses unless pasteurized
* Dirt is a no-no. Garden with a mask. Some foods, such as raw strawberries & raspberries are very difficult to clean.
* There are two points of view on shellfish. My center says it's okay as long as it's cooked and cleaned well enough

More info on nutrition can be found in the government booklet, Food safety for Transplant Recipients:
http://www.fsis.usda.gov/PDF/Food_Safety_for_Transplant_Recipients.pdf
Jay Lackritz@Optonline.net
http://Lackritz.net
Bilateral Lung TX, May 10, 2007, Columbia University Medical Center/NYPH
http://docs.google.com/Doc?id=dcfvz4r4_0hqhtpd9c
http://docs.google.com/Doc?id=dcfvz4r4_1gb4cjfcx
Hostess Rise
Board Administrator
Username: Risa

Post Number: 9624
Registered: 05-2003
Posted on Thursday, July 09, 2009 - 01:20 pm:   Edit Post Delete Post Print Post

Thank you! I appreciate everyone's input.
transplantbuddies@gmail.com
CF- diagnosed at 2 years old
Florida, USA
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

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TransplantBuddies Sponsors
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katie
Member
Username: Lola

Post Number: 33
Registered: 05-2009
Posted on Thursday, July 09, 2009 - 02:55 pm:   Edit Post Delete Post Print Post

No eating fast food for first few months post tx
No grapefruit
No sunbathing
No over the counter meds without checking with tx hospital
Wear gloves when gardening
Wash hands
Never miss a hospital appointment

Katie
JT
Member
Username: Jtr

Post Number: 68
Registered: 10-2008
Posted on Thursday, July 09, 2009 - 03:46 pm:   Edit Post Delete Post Print Post

Always take your meds on time
Widebrim hats and sunscreen
Consult your transplant team when you have a fever over 100
Avoid people who are sick
Drink enough water
Eat enough protein
Join a support group
exercise and stay in shape
Watch out for weight is easily gained
Treat all infections ASAP
see your dermatologist every 3 months
Advocate for yourself. Let your team know what is bothering you
Have a positive attitude
Give thanks for your donor
Promote organ donation
Post your comments on transplantbuddies
Stay informed about transplantation issues
Get your flu shot
J T Rhodes
Anne
Member
Username: Buckeye_4_life

Post Number: 267
Registered: 03-2008
Posted on Saturday, July 11, 2009 - 10:10 am:   Edit Post Delete Post Print Post

No babie loving for 10-14 days after they receive a LIVE virus vaccine. Like rotovirus or MMR, chickenpox.
Anne
kidney recipient 3/11/96, deceased donor, John L.
- dialysis started 11/15/07
son Billy gave me the gift of life May 6, 2008 at The Ohio State University! Amazing!
Doubly blessed!!
Hostess Rise
Board Administrator
Username: Risa

Post Number: 9662
Registered: 05-2003
Posted on Saturday, July 11, 2009 - 10:33 am:   Edit Post Delete Post Print Post

thank you all. Keep them pouring in. I am thinking of placing your initials or first name next to the ideas you have shared. I am thinking....
transplantbuddies@gmail.com
CF- diagnosed at 2 years old
Florida, USA
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

Visit Transplant Buddies on FaceBook

TransplantBuddies Sponsors
http://www.transplantbuddies.org/html/thanks.php
Terri
Member
Username: Terri

Post Number: 257
Registered: 09-2007
Posted on Saturday, July 11, 2009 - 10:50 am:   Edit Post Delete Post Print Post

Always take your meds on time - I try to do this but after 18 years....it doesnt always happen but they do get taken.

Widebrim hats and sunscreen - No hat but do wear sunscreen

Consult your transplant team when you have a fever over 100 - depends on where I think fever is coming from...if I have the flu or cold, I just take something to lower it and then if it dont help....then I call them

Avoid people who are sick - that doesnt always work

Drink enough water - I am not sure what enough is?

Eat enough protein - Yes I love chicken :-)

Join a support group - I am a member of several online groups such as this one and our clinic has one too that I visit when I get labs or see doctor

exercise and stay in shape - I run

Watch out for weight is easily gained - I run

Treat all infections ASAP - agreed

see your dermatologist every 3 months - guilty I dont do this....

Advocate for yourself. Let your team know what is bothering you - Oh dont worry, I have them on speed call

Have a positive attitude - yes

Give thanks for your donor - yes

Promote organ donation - yes

Post your comments on transplantbuddies - yes

Stay informed about transplantation issues - I try to do this and help people with theres but I am still on old school meds and so when they talk to me about theres, its mainly over my head but I listen if anything.

Get your flu shot - yes or one I end up dying in the ER...been there done that
Terri - Because I CAN
Liver Transplant July 2, 1991
Hostess Rise
Board Administrator
Username: Risa

Post Number: 9665
Registered: 05-2003
Posted on Saturday, July 11, 2009 - 06:20 pm:   Edit Post Delete Post Print Post

:-) You are so cute Terri
transplantbuddies@gmail.com
CF- diagnosed at 2 years old
Florida, USA
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

Visit Transplant Buddies on FaceBook

TransplantBuddies Sponsors
http://www.transplantbuddies.org/html/thanks.php
Terri
Member
Username: Terri

Post Number: 259
Registered: 09-2007
Posted on Saturday, July 11, 2009 - 11:01 pm:   Edit Post Delete Post Print Post

Thanks Risa :-)

No eating fast food for first few months post tx - I broke this one, had parents get me some KFC when I was still in hospital. My doctors were ok with it though because before transplant...I was on a very strict no protein diet. I had never in my life eaten any meat or anything that had protein in it so this was my one post transplant wish.

No grapefruit - yuck I hate this anyway

No sunbathing - if this means no laying in the sun, I don't but do go out in it with sunscreen.

No over the counter meds without checking with tx hospital - agreed

Wear gloves when gardening - I dont like gardening so nothing to worry about here....not a dirt loving kind of girl.

Wash hands - I do this lots

Never miss a hospital appointment - never missed one except I was supposed to get labs in June but played hooky. I needed a little break as they were having me come constantly but I am going this month so no one yell at me :-)
Terri - Because I CAN
Liver Transplant July 2, 1991
nish
Member
Username: Rickysyfee

Post Number: 94
Registered: 06-2008
Posted on Sunday, July 12, 2009 - 10:35 am:   Edit Post Delete Post Print Post

This is really nice! and Great idea to have them in one place Risa!

I' d like to add

no live vaccines

and I know someone said raw fish
But they told me no raw anything or undercooked anything
(like eggs or medium steaks or burgers)

also rose you were very quick thinking I dont know If I would have been -but I heard a story of someone in the same situation that got a hand fungus that traveled to the lung and almost died-I am so happy you caught that!
williette
Member
Username: Wiljay

Post Number: 9
Registered: 05-2009
Posted on Monday, July 13, 2009 - 11:33 am:   Edit Post Delete Post Print Post

For lung transplant patients, NO cleaning solutions! I got chemical burns in my lungs, from scrubbing my bathroom, used 409 cleaner. Also, get sick when I use Windex, anything with ammonia. I should have known better my doctor said. So now, I don't have to clean my house any more! A good thing! someone else has to deep clean for me now.
Williette
Transplant 2000
single lung at UVA
Virginia, USA
Terri
Member
Username: Terri

Post Number: 264
Registered: 09-2007
Posted on Monday, July 13, 2009 - 01:00 pm:   Edit Post Delete Post Print Post

I wonder if the no Amomonia goes for liver people too? I am all the time cleaning something with it
Terri - Because I CAN
Liver Transplant July 2, 1991
Kim
Member
Username: Kimothy614

Post Number: 292
Registered: 05-2007
Posted on Monday, July 13, 2009 - 02:04 pm:   Edit Post Delete Post Print Post

Willette,

For real?! I just wear a mask and gloves whenever I do some heavy duty cleaning in my apartment.
Dx~Eisenmengers Syndrome and Primary Pulmonary Hypertension @ 2 yrs old

Heart/Double Lung~6/14/96
http://www.facebook.com/kim.jacques

Tallahassee, FL, US of A

I am a living, breathing, butt-kicking transplant recipient......any questions?
Frank J.
Member
Username: Txaggie86

Post Number: 69
Registered: 03-2009
Posted on Monday, July 13, 2009 - 02:08 pm:   Edit Post Delete Post Print Post

When you go out in the sun, wear longsleeve shirts with sunblock (UPf 50 or higher).

You can find them at LL Bean

http://www.llbean.com/webapp/wcs/stores/servlet/LLBSearchDispatch?storeId=1&cata logId=1&langId=-1&init=0&freeText=upf&Go=

You can also do a search on "UPF clothing".
Frank Jones
Emory University Hospital, Atlanta, GA - April 2005 and April 2006.

Anyone who considers protocol unimportant has never dealt with a cat. - Robert A. Heinlein
Terri
Member
Username: Terri

Post Number: 265
Registered: 09-2007
Posted on Monday, July 13, 2009 - 02:10 pm:   Edit Post Delete Post Print Post

Frank you live in Georgia....its wayyyyyyy too hot for long sleeves :-)
Terri - Because I CAN
Liver Transplant July 2, 1991
Frank J.
Member
Username: Txaggie86

Post Number: 71
Registered: 03-2009
Posted on Monday, July 13, 2009 - 02:47 pm:   Edit Post Delete Post Print Post

These are pretty thin sleeves. There are vents everywhere that allow air to flow through. I have worn them down in Gulf Shores and found they do very well.
Frank Jones
Emory University Hospital, Atlanta, GA - April 2005 and April 2006.

Anyone who considers protocol unimportant has never dealt with a cat. - Robert A. Heinlein
williette
Member
Username: Wiljay

Post Number: 10
Registered: 05-2009
Posted on Monday, July 13, 2009 - 02:55 pm:   Edit Post Delete Post Print Post

Teri,
I don't know if it would affect liver TX, I just know that after a lung transplant, our lungs become very sensitive to chemicals, some more than others. I actually had to be hospitalized after my last cleaning, it caused my bronchiectasis to flair up, it acted just like a very bad cold, with congestion, etc. hard to breath. I leave the house now when they clean my floors, etc. I don't imagine too much chemicals are good for anyone.
Williette
Transplant 2000
single lung at UVA
Virginia, USA
Deb
Member
Username: Deb

Post Number: 695
Registered: 06-2003
Posted on Monday, July 13, 2009 - 04:11 pm:   Edit Post Delete Post Print Post

Sometimes instead of "One Day at a Time," you may have to take a few steps backward and listen to your body and take, "One Step at a Time."
Breath and enjoy life. : )
Kidney transplant 6/22/2002
lildeb
Deb
Member
Username: Deb

Post Number: 698
Registered: 06-2003
Posted on Monday, July 13, 2009 - 04:40 pm:   Edit Post Delete Post Print Post

One more just from personal experience. Do not take any prescriptions until you check with your nephrologist first even if it is a prescription from another doctor.

I just got two new prescription today for my acid reflux by my stomach specialist. Of course, I called my neph. and they called back told to only take them for only ONE month!
I do not know why, but that is what he say, so that is what I will do.

Anybody know why these two particular medicines he said only a month, I think the main was Carafate?
The two drugs are: Carafate and Donnatal. I am also getting a Hidascan and EDG on 27 of July.
Kidney transplant 6/22/2002
lildeb
Happy2Bhere
Member
Username: Happy2bhere

Post Number: 2655
Registered: 02-2008
Posted on Friday, July 17, 2009 - 11:57 am:   Edit Post Delete Post Print Post

Speak up when you think something is wrong.

Doctors are human: They can miss important diagnoses, including heart attacks. A patient's awareness and vigilance can make a difference.

Most doctors want a patient who's informed and would rather have a patient who's informed, who's helping them so they won't make a mistake. Don't be intimated because they are in a white coat. Don't be intimidated because they are using big words.'"

If patients can recognize potentially serious symptoms, they'll have more power when they go to the doctor or the emergency room.

Ol' Bob
Texas Bob
http://www.cafepress.com/Happy2Bhere_2
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php
Hostess Rise
Board Administrator
Username: Risa

Post Number: 9770
Registered: 05-2003
Posted on Sunday, July 19, 2009 - 01:16 pm:   Edit Post Delete Post Print Post

I am thinking about moving this thread to the blog area. If come to this forum to look for it and it is missing look at the blog area for the Do's and Don'ts
transplantbuddies@gmail.com
CF- diagnosed at 2 years old
Florida, USA
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

Visit Transplant Buddies on FaceBook

TransplantBuddies Sponsors
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Lindsey3
Member
Username: Lindsey3

Post Number: 201
Registered: 06-2007
Posted on Monday, July 20, 2009 - 06:35 am:   Edit Post Delete Post Print Post

Thoroughly wash all fruit and vegetables before eating.
Be wary of eating raw veggies out at public restaurants as you do not know how well they were cleaned.
No buffets

Try to wear a mask in overly crowded conditions. Windy weather (blows stuff into your face) and always wear a mask if you are at your docs office or the hospital

Try to stay away from smoke - if you must be around it try to remove yourself from the situation as soon as possible.

SUNSCREEN

If ANYTHING seems "not right" call the clinic regardless of how small it may seem.

If you do not feel well and it persists for more than 5 hours be sure to call the clinic.

Keep up to date with your vaccinations - but make sure you get NO live virus vaccinations.

Check your temp and blood pressure daily as blood pressure can increase due to the transplant meds (speaking from experience).

Fever, coughing, shortness of breath or becoming easily fatigued are signs of rejection - be aware of them and call the clinic if you are concerned.

This is just a personal recommendation - do sinus rinses if you have a sinus condition as well. It helps to keep your sinuses clean and can prevent the bacteria in your sinuses from moving to your lungs.

Wear a mask when cleaning or dusting your home or have someone else do it :-)
Lindsey
25 with Cystic Fibrosis
Double Lung Transplant at Mayo Clinic ~
May 2, 2007
Hostess Rise
Board Administrator
Username: Risa

Post Number: 9838
Registered: 05-2003
Posted on Sunday, July 26, 2009 - 01:58 pm:   Edit Post Delete Post Print Post

Thank you Lindsey

I will add some Do's

!. During difficult times, think positive thoughts when you can

2. Exercise under your doctors guidance.

3. Incorporate more healthier food choices in your day.

4. Practice mind and body healing techniques if this interest you.


---------------------------------------------------
transplantbuddies@gmail.com
CF- diagnosed at 2 years old
Florida, USA
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

Visit Transplant Buddies on FaceBook
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TransplantBuddies Sponsors
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eric goberman
Member
Username: Ericg1950

Post Number: 120
Registered: 05-2006
Posted on Sunday, July 26, 2009 - 06:25 pm:   Edit Post Delete Post Print Post

I almost forgot my favorite:

NO LITTLE KIDS !!

seems like such a good rule even without a transplant !

They get live virus vaccinations.. and they are a walking germ factory anyway !
Ht tx 2/17/2005
Col Pres NYC
Hostess Rise'
Board Administrator
Username: Risa

Post Number: 9947
Registered: 05-2003
Posted on Friday, July 31, 2009 - 12:08 pm:   Edit Post Delete Post Print Post

For all of you that have trouble sleeping, you are not alone. I have had sleep issues from time to time.

I am a firm believer in:

talking things out with your spouse, partner and family members.

writing down your thoughts and feelings,

Looking for people to support you outside your circle of friends.

Have your mineral levels and thyroid checked.

Practice energy medicine and healing arts.

Practice deep relaxing breathing exercises throughout the day.

Look at wearing an eye mask to block out any light in your bedroom.

Avoiding sugary foods and coffee after 4:00 PM.
Founder of TransplantBuddies

Contact transplantbuddies@gmail.com

History-
Cystic Fibrosis- diagnosed at 2 years old
Florida, USA
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

Visit Transplant Buddies on FaceBook
http://facebook.com/transplant.buddies

Please visit our Sponsors
http://www.transplantbuddies.org/html/thanks.php
donnie
Member
Username: Donnie

Post Number: 95
Registered: 02-2009
Posted on Friday, July 31, 2009 - 02:59 pm:   Edit Post Delete Post Print Post

Risa, have you thought of energy testing the writings on these blogs to determine their energy strengths, or levels of truth?

The book I mentioned earlier, Power vs. Force calibrates very high on the level of truth, some chapters as high as 870 on a scale of zero to a thousand. Just wondering.
donnie.teambuilders@gmail.com
Donnie Lynn
Malta,Mt
Polycystic Kidney Disease
tx 1/08/08. Virginia Mason. Seattle, Wa.
My wife gave me one of hers.
we are all connected
Hostess Rise'
Board Administrator
Username: Risa

Post Number: 9957
Registered: 05-2003
Posted on Friday, July 31, 2009 - 04:10 pm:   Edit Post Delete Post Print Post

Hi Donnie

I learned how to muscle test aka energy test on a number scale. I do this with my hands and my hubby will test me. I can muscle test to thoughts but would not work with other people. I believe when you muscle test you receive truth for that moment. If you test strong to a vitamin right now, it does not mean you will test strong to the vitamin the next day. The books that I have read state this.

I never heard of what you are talking about with your scale. Very interesting. I will have to buy the book and find out for myself.

Tell me what do you use when you calculate your scale? Let us discuss this on another thread.
Founder of TransplantBuddies

Contact transplantbuddies@gmail.com

History-
Cystic Fibrosis- diagnosed at 2 years old
Florida, USA
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

Visit Transplant Buddies on FaceBook
http://facebook.com/transplant.buddies

Please visit our Sponsors
http://www.transplantbuddies.org/html/thanks.php
cactus
Member
Username: Cactus

Post Number: 56
Registered: 05-2009
Posted on Saturday, August 15, 2009 - 07:13 pm:   Edit Post Delete Post Print Post

It seems to me that money, cash or coin, is one of the most "unclean" things one can handle, but I haven`t seen any warnings about it.

cactus
cactus

pre-transplant liver
Jay Lackritz
Member
Username: Jay_ny

Post Number: 196
Registered: 01-2007
Posted on Saturday, August 15, 2009 - 08:00 pm:   Edit Post Delete Post Print Post

You're right, cactus.

Best suggestion. put all you can find in an envelope and send it to:
Jay Lackritz.... Airmont, NY (Just trying to help.)

But seriously, I used to work for Agilent Technologies with gas chromatographs, and every bill we analyzed had at least traces of drugs. Mostly cocaine, but also heroin. I think it exists on over 80% of all bills (especially US bills).
Jay Lackritz@Optonline.net
http://Lackritz.net
Bilateral Lung TX, May 10, 2007, Columbia University Medical Center/NYPH
http://docs.google.com/Doc?id=dcfvz4r4_0hqhtpd9c
http://docs.google.com/Doc?id=dcfvz4r4_1gb4cjfcx
cactus
Member
Username: Cactus

Post Number: 57
Registered: 05-2009
Posted on Saturday, August 15, 2009 - 08:22 pm:   Edit Post Delete Post Print Post

Ha!! I could put it all in an envelope but it wouldn`t be enough to pose any threat!!

cactus
cactus

pre-transplant liver
cactus
Member
Username: Cactus

Post Number: 58
Registered: 05-2009
Posted on Sunday, August 16, 2009 - 10:15 am:   Edit Post Delete Post Print Post

I was also thinking, if it has cocaine traces, it`s probably been somewhere I wouldn`t put my finger.

cactus
cactus

pre-transplant liver
Hostess Rise'
Board Administrator
Username: Risa

Post Number: 10208
Registered: 05-2003
Posted on Saturday, August 29, 2009 - 05:01 pm:   Edit Post Delete Post Print Post

This is for the all the newbies that joined today:-)

Welcome to Transplant Buddies *rolls out the hostess cart with all healthy kinds of welcome treats*

Please continue to build on this post.
Founder of TransplantBuddies

Contact transplantbuddies@gmail.com

History-
Cystic Fibrosis- diagnosed at 2 years old
Florida, USA
1st Tx - 96 LUMC
2nd double lung tx-05 JMH

Visit Transplant Buddies on FaceBook
http://facebook.com/transplant.buddies

New To Shaklee
http://www.shaklee.net/preciouslife
Hostess Rise'
Forum Leader
Username: Risa

Post Number: 10503
Registered: 05-2003
Posted on Saturday, October 10, 2009 - 08:45 pm:   Edit Post Delete Post Print Post

Hi

Time to give this thread a toss to the top. I hope someone can catch it.
Transplant Buddies flyer -share with friends and your transplant center by printing our flyer.
http://www.transplantbuddies.org/images/TxBuddies_poster.pdf

Cystic Fibrosis- dx at 2 years old
2nd double lung tx-05 JMH

Contact me transplantbuddies@gmail.com
Jay Lackritz
Member
Username: Jay_ny

Post Number: 207
Registered: 01-2007
Posted on Saturday, October 10, 2009 - 10:50 pm:   Edit Post Delete Post Print Post

There was a very interesting story on the news last week in all the papers and on all the tv stations on the 10 most dangerous foods.
The story struck me because these foods are almost all on the list we get from our transplant centers as foods to avoid.

Leafy greens, eggs, oysters, unpasteurized cheeses, tomatoes, sprouts, and berries are all on the list, and also on many transplant lists. Many of these are due to the dirt they are grown in, and then served raw or undercooked.
Some of the other items on the top 10 list are mostly due to improper refrigeration (tuna) or cross contamination with other (raw or undercooked) ingredients used in preparation (potatoes and ice cream).

Here is the Center for Science in Public Interest's List of Top 10 Risky Foods.

http://cspinet.org/new/pdf/cspi_top_10_fda.pdf

Here is the FDA list with explanations:

http://www.cbsnews.com/htdocs/pdf/FDA_Top_Ten_Report_dangerous_foods.pdf?tag=con tentMain;contentBody

You can also find dozens of stories if you Google for FDA list of Top 10 most dangerous foods.

Be safe, Jay
Jay Lackritz@Optonline.net
http://Lackritz.net
Bilateral Lung TX, May 10, 2007, Columbia University Medical Center/NYPH
http://docs.google.com/Doc?id=dcfvz4r4_0hqhtpd9c
http://docs.google.com/Doc?id=dcfvz4r4_1gb4cjfcx
Hostess Rise'
Forum Leader
Username: Risa

Post Number: 10506
Registered: 05-2003
Posted on Sunday, October 11, 2009 - 05:20 am:   Edit Post Delete Post Print Post

Thank you so much Jay

It is so sad because my too favorites are berries and tomatoes. I cook my tomatoes and now I will steam my berries. I usually eat frozen berries. As far as eggs, we buy Safe Eggs here. I have eaten eggs almost everyday of my life.
Transplant Buddies flyer -share with friends and your transplant center by printing our flyer.
http://www.transplantbuddies.org/images/TxBuddies_poster.pdf

Cystic Fibrosis- dx at 2 years old
2nd double lung tx-05 JMH

Contact me TxbuddiesEmail@gmail.com
Jay Lackritz
Member
Username: Jay_ny

Post Number: 208
Registered: 01-2007
Posted on Sunday, October 11, 2009 - 12:21 pm:   Edit Post Delete Post Print Post

Risa,

Because of all the rain this spring and summer, our tomatoes haven't been great.
Steaming berries is a great idea. My family kept me free from strawberries and raspberries this summer. And, to heck with salad bars... I always had my suspicions in the past, especially when I would see someone reaching in to grab a carrot.
And, I only eat scrambled eggs now. I really miss dipping my toast into the barely cooked yoke of sunny side up eggs.

On the other hand, I can breathe now, and life is more sunny side up than ever before
Jay Lackritz@Optonline.net
http://Lackritz.net
Bilateral Lung TX, May 10, 2007, Columbia University Medical Center/NYPH
http://docs.google.com/Doc?id=dcfvz4r4_0hqhtpd9c
http://docs.google.com/Doc?id=dcfvz4r4_1gb4cjfcx
Hostess Rise'
Forum Leader
Username: Risa

Post Number: 10537
Registered: 05-2003
Posted on Sunday, October 11, 2009 - 12:28 pm:   Edit Post Delete Post Print Post

hi Jay

I like your saying :-)
Transplant Buddies flyer -share with friends and your transplant center by printing our flyer.
http://www.transplantbuddies.org/images/TxBuddies_poster.pdf

Cystic Fibrosis- dx at 2 years old
2nd double lung tx-05 JMH

Contact me TxbuddiesEmail@gmail.com
Bree
Member
Username: Bree

Post Number: 32
Registered: 08-2007
Posted on Sunday, October 11, 2009 - 09:20 pm:   Edit Post Delete Post Print Post

WASH YOUR HANDS AS OFTEN AS POSSIBLE

If hand-washing isn't an option (ie you're out somewhere) BRING YOUR OWN HANDSANITIZER

Keep handsanitizer in your car

Eat healthy - you'll feel better and your other organs will thank you!

Think positively

Excercise

Laugh a lot

Sleep as much as you need to

TAKE YOUR MEDS ON TIME

Celebrate your beautiful life, and thank your donor every day

Wear sunscreen, especially in the car ( i keep it in the car)

Listen to your body
Bree 24, Ontario

Dx: Bronchiectasis as of Feb. 2003

Double Lung Transplant 7/8/9

Toronto General Hospital

Live Loud, Laugh Hard, Love Much
Hostess Rise'
Forum Leader
Username: Risa

Post Number: 10544
Registered: 05-2003
Posted on Monday, October 12, 2009 - 09:03 am:   Edit Post Delete Post Print Post

Thank you Bree. You certainly know all the ropes.
Transplant Buddies flyer -share with friends and your transplant center by printing our flyer.
http://www.transplantbuddies.org/images/TxBuddies_poster.pdf

Cystic Fibrosis- dx at 2 years old
2nd double lung tx-05 JMH

Contact me TxbuddiesEmail@gmail.com
dmorris
Member
Username: Dmorrisn

Post Number: 1
Registered: 12-2009
Posted on Friday, December 11, 2009 - 02:56 pm:   Edit Post Delete Post Print Post

hi from a newbe.
I find the lists very helpful and similar to mine, but as a heart transplant recipient (2004) I recently became aware that I was missing something from my list -
A WEEKLY OR DAILY BLOOD PRESSURE CHECK.
I have had some gastro problems lately, so that may have caused some changes in blood volume. My latest exam showed 195 / 98 - which I should have caught myself (140/70 is average) as it could have caused a stroke. I have a cheap blood pressure cuff ($20), so I just have to remember to use it! I have become complacent, and now know better.
Jay Lackritz
Member
Username: Jay_ny

Post Number: 220
Registered: 01-2007
Posted on Friday, December 11, 2009 - 03:36 pm:   Edit Post Delete Post Print Post

My transplant center gave me a log sheet to keep my own daily records of my readings. For a lung tx recipient, I need to monitor not only my blood pressure and heart rate, but also my spirometer readings, SpO2, temperature, etc.
I scanned them in to my PC, so I could make copies in full page format, or with a large margin for 3 whole binders.
Full page: JPG http://www.lackritz.net/LogSheet.jpg
PDF: http://www.lackritz.net/LogSheet.pdf
Full page for 3 ring binder:
JPG: http://www.lackritz.net/LogSheetfor3holepaper.jpg
PDF: http://www.lackritz.net/LogSheetfor3holepaper.pdf

Also, my Blood Pressure Monitor has a USB cable and software to plug into a PC, which will store all your readings, create charts, tell you what time of day your pressure varies, etc. It's real easy to use, and very accurate:
Omron HEM-670IT: http://tinyurl.com/yadg9mr
Jay Lackritz@Optonline.net
http://Lackritz.net
Bilateral Lung TX, May 10, 2007, Columbia University Medical Center/NYPH
http://docs.google.com/Doc?id=dcfvz4r4_0hqhtpd9c
http://docs.google.com/Doc?id=dcfvz4r4_1gb4cjfcx
Hostess Rise'
Forum Leader
Username: Risa

Post Number: 11748
Registered: 05-2003
Posted on Thursday, December 17, 2009 - 08:38 am:   Edit Post Delete Post Print Post

Hi DMorris

I just noticed today that you joined us. Please start a new thread and introduce yourself.
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 JMH

Transplant Buddies flyer -
http://www.transplantbuddies.org/images/TxBuddies_poster.pdf

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myas_mom
Member
Username: Myas_mom

Post Number: 7
Registered: 05-2010
Posted on Sunday, May 16, 2010 - 08:59 pm:   Edit Post Delete Post Print Post

Does anyone have any recommendations on things to do to my home before bringing home my baby who is having (hopefully soon!) a heart transplant? I will, of course, be cleaning really well before she comes home. Does anyone use special filters, cleaning products, methods for sanitizing, etc.? I don't want to make myself crazy, but if there are some ways to help her not get sick, I'm all for it!
Mary
Member
Username: Smeea5

Post Number: 4
Registered: 05-2010
Posted on Monday, May 17, 2010 - 12:16 am:   Edit Post Delete Post Print Post

My daughter received her heart transplant at 6mos old. She will be celebrating her 2 year heart anniversary July 11th. I always kept her well covered in her carseat or stroller when we went out. I have two older children, and we carried hand sanitizer with us everywhere. I guess I got pretty neurotic, because if they touched the elevator button, we would Purell. Handwashing is a big thing. We always take our shoes off in the house. Bathrooms get wiped down daily. We had our air ducts and carpets cleaned. We do have an air purifier in our living room, but not a whole house filter. The big thing is to avoid sick people. We make EVERYONE who comes into our home wash their hands. None of my children are allowed to have live vaccines. The most important thing is to give meds EXACTLY as they tell you. I set an alarm on my cell phone, and she receives her meds on time down to the minute. I don't know if I'm any less "germaphobic" now, or if this has just become our family's "normal". Where is your baby having his/her transplant? Blessings to you and your baby!
Hostess Rise
Board Administrator
Username: Rise

Post Number: 14219
Registered: 05-2003
Posted on Wednesday, August 25, 2010 - 10:09 am:   Edit Post Delete Post Print Post

I decided this thread needs to be in the blog section for reference purposes. You can always contribute relevant information to this thread:-)
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05
Debra Fertel MD- Med. Dir. Lung Transplant/Pulmonary Hypertension Programs
Jackson Memorial Hospital

Si Pham MD, Professor of Surgery, Dir. of Thoracic Transplant & Artificial Heart Program-Miam Transplant Institute

Anas Hadeh MD, Cleveland Clinic, Weston, Florida
CF consultant- Critical Care and Sleep Medicine

Sharing Knowledge is an Invaluable Experience
Transplant Friends & Chat
Questions- Contact Hostess Rise'
Hostess Meagan
Forum Leader
Username: Newheart14

Post Number: 1878
Registered: 01-2009
Posted on Saturday, April 23, 2011 - 04:34 pm:   Edit Post Delete Post Print Post

Bumping for our new members.
Forum Leader
Heart-Liver Transplant - February 14, 2008
Toronto General Hospital, Toronto, Canada
Idiopathic dilated cardiomyopathy 1991 and CHF

- Most of the important things in the world have been accomplished by people who have kept trying when there seemed to be no hope at all - Dale Carnegie
- Bumps in the road can sometimes be mountains, so I have learned to climb mountains - Meagan

Meagan's Blog
rue
Member
Username: Rebarue

Post Number: 10
Registered: 04-2011
Posted on Saturday, April 23, 2011 - 05:56 pm:   Edit Post Delete Post Print Post

Meagan, thank you for leading me to this thread! Very helpful!

I am going to have to really change my diet because I eat a lot of fruit and vegetables raw.

So is lettuce out?

rue
Hostess Meagan
Forum Leader
Username: Newheart14

Post Number: 1880
Registered: 01-2009
Posted on Saturday, April 23, 2011 - 06:51 pm:   Edit Post Delete Post Print Post

Hi Rue,

You're very welcome. I don't think lettuce is out as long as it is washed thoroughly. We have to exercise extreme hygiene and wash everything we consume very carefully. A definite no-no is grapefruit as it interacts with our immunosuppresants. In the first few months to one year you have to be very particular, but our transplant doctors don't want us to live in a bubble. I think lung recipients have to exercise a little more caution than other transplant recipients. I eat my well-washed strawberries daily when in season, but some recipients don't.

Did you check out the link that Jay posted above?

http://www.fsis.usda.gov/PDF/Food_Safety_for_Transplant_Recipients.pdf

Please post any questions you may have Rue. We have some very informed people on the site.

Hugs, Meagan
Forum Leader
Heart-Liver Transplant - February 14, 2008
Toronto General Hospital, Toronto, Canada
Idiopathic dilated cardiomyopathy 1991 and CHF

- Most of the important things in the world have been accomplished by people who have kept trying when there seemed to be no hope at all - Dale Carnegie
- Bumps in the road can sometimes be mountains, so I have learned to climb mountains - Meagan

Meagan's Blog
Jay Lackritz
Forum Leader
Username: Jay_ny

Post Number: 365
Registered: 01-2007
Posted on Saturday, April 23, 2011 - 07:21 pm:   Edit Post Delete Post Print Post

rue,

I'm a double lung recipient, about to hit my 4 year anniversary. You asked about lettuce. We were told that there is good lettuce (meaning that it is easy to clean thoroughly) and bad lettuce (which can be difficult or impossible to clean).

Iceberg lettuce, for example, is easy to clean and we were allowed to eat iceberg lettuce (at home), a few months after transplant, but rougher lettuce, such as romaine, can be much more difficult to clean, and should be used with caution.

At my hospital, we are told that it is nigh on impossible to clean berries well enough, so the simple solution is to avoid strawberries and raspberries, unless they are cooked, canned, or cleaned by some other method than in the sink.

Some would say that extra precautions can mean a longer life. I was in a discussion a few years ago with someone who decided it was time for him to have sunny side up eggs and eat in salad bars, and within a year, I never heard from him again (doesn't mean he passed on, or didn't get hit by a truck).
I guess it depends on how important it is to you to have that rare steak or salad at your favorite restaurant. Most people would never have a problem. I, for one, and not that lucky. I know people who smoked a pack a day, and lived to be over 100. I smoked for about 25 years, and if I wasn't lucky enough to get a transplant, would be dead today.
Jay Lackritz@Optonline.net
Jay Lackritz.com
Bilateral Lung TX, May 10, 2007, Columbia University Medical Center/NYPH
Google doc
Google doc
Amy Tippins
Member
Username: Amytippins

Post Number: 28
Registered: 06-2009
Posted on Sunday, April 24, 2011 - 12:07 am:   Edit Post Delete Post Print Post

I think all of this is so interesting. I think I have broken almost all of the rules at least once with the support of my surgeon (seriously). He and I must really be living on the edge!

Own 2 cats and change their litter-check
Loved on my niece and nephew right after their shots-check
Sunbath with medium sunblock-check
Take suppliments-check
Eat all fruits and veggies except for grapefruit-check
Been around sick people A LOT-double check
I have never and will never wear a mask-check, check and check
RockScar Love is where we celebrate the scars of new life! www.Rock Scar Love.com

A portion of sales credited to Transplant Buddies goes to COTA!
surviver
Member
Username: Intlmech

Post Number: 6
Registered: 05-2011
Posted on Monday, May 09, 2011 - 02:03 pm:   Edit Post Delete Post Print Post

your site is amazing i've found 1 thing that happened to me was itiching real bad,blood tests done,hade to have my bio ducts opened up;it took 5 e.r.c.p.s made me real sick after the 4th one.but they are good now.if i would have wated much longer doc. said it could have killed me,this happened about 6months after my transplant.oh liver trans.i am responsable to a lung cancer friend about ready to be planted were going to your site to study,she's ready though
Janet
Member
Username: Jj2011

Post Number: 1
Registered: 06-2011
Posted on Thursday, June 23, 2011 - 11:31 am:   Edit Post Delete Post Print Post

Hi everyone, I am new to transplant buddies and have been reading through the different threads. Just want to add a couple things about do's and doníts.

--If you are living in tropical areas in addition to grapefruit and Pomegranate must avoid star fruit, pomelo, and tangelo (honeybell) as they all interfere with antirejection medications.
--Avoid all raw nuts and seeds, must be roasted prior to ingestion
--Avoid all dairy products with bacteria; this includes yogurt, farm cheeses like feta & goat, as well as all moldy and soft cheeses
--the best way to clean all green leafy vegetables is to cut the stems about two inches from the root, soak them for five minutes in a big tub of water with one ounce white vinegar, then rinse 3-4 times until the water in your container is clean. I tend to steam or stir-fry everything.
--I was told by my transplant team as long as the fruits and vegetables are washed, cleaned, and peeled in my home I could eat everything in moderation.
--daily prayer and meditation
--I have found weekly sessions of energy healing, massage, and healing touch to be very effective in keeping up my stamina and helping me sleep through the night.

This is a great support group and I am glad to have found you!
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16279
Registered: 05-2003
Posted on Saturday, June 25, 2011 - 03:13 pm:   Edit Post Delete Post Print Post

Hi Janet

WOW!! Thank you for sharing.

Welcome to Transplant Buddies:-)
CF- dx at 2yrs. 2nd double lung tx-05

Debra Fertel MD- Jackson Memorial Hospital Si Pham MD, Professor of Surgery

Anas Hadeh MD, Cleveland Clinic, Weston, Florida Cystic Fibrosis consultant- Critical Care and Sleep Medicine

Join Facebook
Hostess Rise's blog
My Photos on Transplant Friends

TransplantHELP
Member
Username: Transplanthelp

Post Number: 222
Registered: 11-2010
Posted on Tuesday, July 05, 2011 - 08:21 am:   Edit Post Delete Post Print Post

Rise or anyone, which herbs are not good with transplant drugs?? Most all plant products and herbs are perfectly fine.

A few may not be but I'd like to see a list with something to back it up.

Pomegranate juice?? I've had that since the beginning but usually mixed with Blueberry juice and it might not be 100% but I've never had a problem.

My transplant center never gave such warnings. The only warning I was given was no grapefruit juice.
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16306
Registered: 05-2003
Posted on Tuesday, July 05, 2011 - 10:55 am:   Edit Post Delete Post Print Post

Hi TH,

Pomegranate juice increased my Prograf serum level and after a few days I had what I call a prograf headache.

Herbs and drugs have always been a mystery in medical science and for the right reasons. I just do not know which herbs if any are good for transplant patients.
CF- dx at 2yrs. 2nd double lung tx-05

Debra Fertel MD- Jackson Memorial
Si Pham MD, Professor of Surgery

Anas Hadeh MD, Cleveland Clinic, Weston

My Photos on Transplant Friends

Jay Lackritz
Forum Leader
Username: Jay_ny

Post Number: 390
Registered: 01-2007
Posted on Tuesday, July 05, 2011 - 12:46 pm:   Edit Post Delete Post Print Post

Here is a sheet from OHSU's post transplant program. They have different documents about different organs, but they all include the same instructions about herbal medicines.My transplant team tells us no herbal medications or supplements, and nothing that is meant to boost your immune system.
POM (Pomegranate Juice) is said to have the same effect as grapefruit on many medications such as statins and immunosuppressants, and should be avoided.

Herbal Medications:
Do not take herbal medications. These include but are not limited to:

arnica,
belladonna,
bryony,
calamus,
capsaicin (cayenne or red pepper), chaparral,
coltsfoot,
comfrey,
Echinacea purpurea,
European mistletoe,
false hellebore,
foxglove,
garlic,
germander,
ginger,
ginkgo biloba,
ginseng,
henbane,
Indian snakeroot,
kava kava,
licorice (candy is o.k.),
life root,
lily of the valley,
lobelia,
ma-huang (Ephedra),
male fern,
mandrake,
milk thistle,
oil of worm wood,
pasque flower,
pennyroyal,
periwinkle,
pheasantís eye,
saw palmetto,
St Johnís Wort,
squill,
thorn apple,
valerian,
yellow jasmine,
yew,
yohimbe.

References:

http://www.ohsu.edu/transplant/liver-posttx_ptmanual-040610.pdf

http://altmedicine.about.com/od/druginteractions/a/pom_interaction.htm

http://dmd.aspetjournals.org/content/33/5/644.abstract
Jay Lackritz@Optonline.net
Jay Lackritz.com
Bilateral Lung TX, May 10, 2007, Columbia University Medical Center/NYPH
Google doc
Google doc
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16309
Registered: 05-2003
Posted on Tuesday, July 05, 2011 - 12:54 pm:   Edit Post Delete Post Print Post

Thank you Jay

What do you mean supplements? Are you allowed to take vitamins minerals and water soluble vitamins?

Having CF, I need my supplements and will continue to take them.
CF- dx at 2yrs. 2nd double lung tx-05

Debra Fertel MD- Jackson Memorial
Si Pham MD, Professor of Surgery

Anas Hadeh MD, Cleveland Clinic, Weston

My Photos on Transplant Friends

Jay Lackritz
Forum Leader
Username: Jay_ny

Post Number: 391
Registered: 01-2007
Posted on Tuesday, July 05, 2011 - 03:39 pm:   Edit Post Delete Post Print Post

When I said herbal medicines and supplements, I was trying to say that it's fine to, for example, cook your Romanian steak in garlic, or use herbs and spices in cooking, but you shouldn't take herbal supplements, like garlic pills for example, where there is a much larger dose of the herb.

I take TONS of supplements, most of which were prescribed by my transplant pulmonologist. Most of my monthly cost of meds are OTC, and not prescription meds. I also take ones not recommended by my transplant team, but approved by them. Anytime I want to add one, like krill oil or CoQ10, for example, I run it by my transplant doc first.

Many have asked me about herbs, post transplant, and when they hear "NO HERBAL MEDICINES" from the transplant team, they worry that they can't have a little ginger or garlic as a spice, so I always make sure I say "no herbal medicines or supplements" to differentiate flavorings from medicines.
Jay Lackritz@Optonline.net
Jay Lackritz.com
Bilateral Lung TX, May 10, 2007, Columbia University Medical Center/NYPH
Google doc
Google doc
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16310
Registered: 05-2003
Posted on Tuesday, July 05, 2011 - 04:50 pm:   Edit Post Delete Post Print Post

Thank you Jay

Excellent clarification!
CF- dx at 2yrs. 2nd double lung tx-05

Debra Fertel MD- Jackson Memorial
Si Pham MD, Professor of Surgery

Anas Hadeh MD, Cleveland Clinic, Weston

My Photos on Transplant Friends

TransplantHELP
Member
Username: Transplanthelp

Post Number: 224
Registered: 11-2010
Posted on Wednesday, July 06, 2011 - 12:10 pm:   Edit Post Delete Post Print Post

Jay, that's not true what you say about the garlic and green tea.

I've even asked people in the nephrology community about why green tea is supposedly bad for Tx patients and no one can say why.

I got the info thanks to Hostess Rise. I got a consult for the Holistic Kidney doctor Dr. Jenna Henderson.

She is very knowledgable and impressive. I wasn't expecting much but she really knows her stuff.

I admit I haven't got the products she recommended yet but just the knowledge she sent me shows she's really done her training. She knows things that even our transplant docs don't and she's HAD a transplant!

Even our nephrologists can't say that!
Jay Lackritz
Forum Leader
Username: Jay_ny

Post Number: 392
Registered: 01-2007
Posted on Wednesday, July 06, 2011 - 02:15 pm:   Edit Post Delete Post Print Post

Thanks, TH,
As we all know, everyone is different. For example, you say that you use Pomegranate juice with no problems, even though it is known to interfere with Prograf and increase its levels. Rise' has noticed this effect.

That list of herbal medicines was not from my hospital, but another transplant center, and I found it interesting, since each center seems to have different data.

I like green tea, and asked my transplant nutritionist, and was told that it's fine in moderation. I think moderation is a key word. This is why the hospitals say "no herbal MEDICINES". They don't say no herbs and spices in your cooking.

Green Tea is an interesting case. It is known to boost the immune system, which is considered a no-no by most TX centers. After all, we suppress our immune systems on purpose and do not want to boost them for obvious reasons.
We have had many discussions on Green Tea here at Buddies. Here's a quote from one of the posts that I find interesting:

"We went to a seminar in Chicago for transplant patients of all types. We talked with a nurse who mentioned that they were having problems with patients who had wild swings in their prograf levels from drinking green tea. Iced or warm, she said it would be a good idea to abstain from it."
http://www.transplantbuddies.org/tbx/messages/7/269033.html?1283421522
Not just pomegranate and grapefruit, there are apparently many, many substances that can radically affect the immunosuppressants I take.

I found another interesting list of herbs that are definitely bad, probably bad, and probably okay . Note that this is some random page I found on the internet, and I can't make any statements as to it's veracity:

http://www.secondchanceforlife.org/drug_interaction.htm

Personally, I feel like my transplant center does, better safe than sorry. I don't want to fool around with my health at this point in my life, so I would need a really good reason to take something that so many people say I shouldn't.

My philosophy has greatly changed since my transplant. I used to search out raw foods and live foods, and would avoid certain sections of the supermarket and did much of my shopping in health food stores. Nowadays, for example, I know that if it's in a can, it is usually safe to eat, since any bacteria in there would cause the can to explode. As such, I feel safe eating canned berries, and am forced to avoid fresh berries. This is an 180į shift for me. In the old days, I only searched out the freshest foods I could find, and ate as many raw or only slightly cooked foods as I could.
As such, I would rather talk to a transplant specialist, than a nutritionist or holistic practitioner. This immune system suppression and interactions is very new science, and is not studied by people who tell me to drink green tea to boost my immune system.

I also know that there are many people who can eat sushi, rare meats, raw berries, sunny side up eggs, and never have any problems. My wife's family has many people who chain smoke, and they all live to 100 with no respiratory problems. I'm not one of those people. I smoked for 20 years, and almost died after I destroyed my lungs. I know that if I go around eating sushi, I might not be around for that much longer. As such, I am a bit more careful (anal) than some other people.

JMO
Jay Lackritz@Optonline.net
Jay Lackritz.com
Bilateral Lung TX, May 10, 2007, Columbia University Medical Center/NYPH
Google doc
Google doc
Deb
Member
Username: Deb

Post Number: 411
Registered: 06-2003
Posted on Wednesday, July 06, 2011 - 06:50 pm:   Edit Post Delete Post Print Post

Risa, I think you have your hands full when you asked all of us to post our do and don't suggestions. However, I think it is a great idea because I think we all have asked time and again about this topic.

P.S. Don't forget to count your blessings.
Kidney transplant 6/22/2002
lildeb
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16315
Registered: 05-2003
Posted on Thursday, July 07, 2011 - 01:28 pm:   Edit Post Delete Post Print Post

Hi Deb

Sharing knowledge is an invaluable experience. I love to read everyone's responses. From the way I view everything written here, there is valuable information from both sides.
CF- dx at 2yrs. 2nd double lung tx-05

Debra Fertel MD- Jackson Memorial
Si Pham MD, Professor of Surgery

Anas Hadeh MD, Cleveland Clinic, Weston

My Photos on Transplant Friends

TransplantHELP
Member
Username: Transplanthelp

Post Number: 228
Registered: 11-2010
Posted on Thursday, July 07, 2011 - 04:21 pm:   Edit Post Delete Post Print Post

LOL..Jay if it was really true that anything that can boost our immune system can't be consumed then we couldn't eat most all veggies and fruits or juices from them since most all of them help your immune system!Tomatoes, Spinach, broccoli, oranges, pineapples, asparagus, carrots, cauliflower, peas, lentils, etc. and juices from them all boost the immune system. So we can't have ANY of those?

Your Tx source said NO tea at all? That's a case of being overly and unecessarily cautious. I've had tea lots of time and gallons and gallons of vegetable juice and tomato juice with no problems at all. Along with Pomegranate/blueberry juice.

My Tx never gave me any warnings about things not to eat or drink except grapefruit juice.

Jay, can you please say why you mentioned garlic pills?? Is that something for lung patients and not kidney patients? I couldn't find anything but benefits from garlic and nothing where it would harm a kidney, transplanted or not. I'm sure you know garlic is in dozens of foods and some in huge amounts!

BTW, your e-mail address doesn't work when I tried to e-mail you! It said it is not recognized.
Jay Lackritz
Forum Leader
Username: Jay_ny

Post Number: 393
Registered: 01-2007
Posted on Thursday, July 07, 2011 - 05:18 pm:   Edit Post Delete Post Print Post

TH,

Is it really true that your "Tx never gave me any warnings about things not to eat or drink except grapefruit juice". That seems odd to me and not common among other transplant centers. Even the US Government puts out brochures for transplant recipients that say many foods need to be avoided.

Did I say "no tea"? I don't think so. I did say that I drink green tea. The main point in dispute about green tea is that it has been known to cause wild swings in Prograf levels. Luckily, it has not done that with me, because, as I said, I drink green tea regularly.

Garlic is on the list in the transplant document from the University of Oregon that I gave the link to in my earlier message. This is a transplant center that publishes a list for their transplant patients of do's and dont's for post transplant. I didn't say that I agree with everything that they recommend. I had my transplant in NY, not on the left coast.

In the other document I referenced that has lists of good, bad, and unknown herbs. They say that garlic is safe, but has anti-platelet activity,should avoid with warfarin.
I love garlic in cooking. Would be very hard to give it up, but it's okay for me to take another thing that thins my blood. ;)

Once again, I need to stress that the transplant centers say no herbal MEDICINES.(Even if they never told you this in your center, which surprises me), It would appear to me that they are not talking about tea, or foods. I said garlic pills and you said "garlic is in dozens of foods". We're not taking about the same thing.

Don't know why my email address isn't working, but you can just go to Lackritz.com and there's a link near the top with one of my email addresses.
Jay Lackritz@Optonline.net
Jay Lackritz.com
Bilateral Lung TX, May 10, 2007, Columbia University Medical Center/NYPH
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TransplantHELP
Member
Username: Transplanthelp

Post Number: 229
Registered: 11-2010
Posted on Thursday, July 07, 2011 - 07:28 pm:   Edit Post Delete Post Print Post

But Jay, why Garlic pills?? What's the concern??

Even a pharmacist I talked to said she had not heard of any major interactions with garlic pills and any medication since they sell both at Walgreens.
Jay Lackritz
Forum Leader
Username: Jay_ny

Post Number: 394
Registered: 01-2007
Posted on Thursday, July 07, 2011 - 08:21 pm:   Edit Post Delete Post Print Post

TH,
As I said above, garlic is on the list of herbal medicines to avoid from the transplant center in Oregon. Once again, I have no separate knowledge about their list of 40 or so herbal medicines to avoid.

References about what plants, herbs, medicines, supplements, teas, etc. etc. have possible interactions with immunosuppressants is very hard to come by, since no one has performed the studies or tests about everything one might find planted in his garden or for sale in his health food store.

You asked the following:
"Rise or anyone, which herbs are not good with transplant drugs?? Most all plant products and herbs are perfectly fine.
A few may not be but I'd like to see a list with something to back it up."

I know of a transplant center that publishes such a list, so I posted it for you. I did not study all 40 herbs and products. My hospital gave me no such list. However, my hospital DID tell us to stay away from any herbal medicines without individual clearance.You asked for a list.... I gave you one. Actually, I gave two separate references with differing lists, though the second list is not from a transplant center, and they have known bad herbs and supposed safe herbs. I cannot argue about the merits or issues with the 40 different herbs on that list. I didn't write it,.

Here's the Website for the transplant center in Oregon, and their "Life After Transplant" section. You're free to call or write them to ask why they include garlic on their list (or any other herb). You can select any organ they transplant for specific information, but the herb list is included for all organs (except lungs, as with many other centers, they do not transplant lungs).
http://www.ohsu.edu/transplant/lifeaftr.html

You're on your own for finding individual references about any single substance. If you can find a reference that says that garlic supplements or pills are safe for people who are on immunosuppressants, with, as you say, something to back it up, I would love to see it as well. Always looking for knowledge.

If a transplant center tells you "don't" and your Walgreen's pharmacist says "do", then it's up to you to decide. It's rare when everyone will agree about something like this, not just about garlic supplements but even pomegranate juice.

I wonder what's behind your concern about garlic pills? Are you taking them for indigestion? Does your transplant center ask you to get any supplements or medications approved with them before you start taking them, or are you free to take anything you feel like taking?

That might be an interesting question for the group, Rise'. Was anyone else told to clear all meds and supplements through their transplant doctors, or can they take anything they want? Was anyone else told that all foods, including all herbal supplements other than grapefruit are okay? Do other transplant centers have nutritionists assigned to transplant patients to educate them on what needs to be avoided, along with what helps? Do most people have regular follow-ups with their transplant doctors?
Jay Lackritz@Optonline.net
Jay Lackritz.com
Bilateral Lung TX, May 10, 2007, Columbia University Medical Center/NYPH
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Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16319
Registered: 05-2003
Posted on Friday, July 08, 2011 - 04:33 am:   Edit Post Delete Post Print Post

Interesting that the subject of garlic came about.

Since transplant life, whenever I have fresh garlic my heart starts to race. I thought the powder was fine but now I cannot tolerate garlic powder either.

This experience has happened to me many times so now I will avoid garlic altogether. I have heard many other people (non-transplant) that have the same trouble with garlic.
CF- dx at 2yrs. 2nd double lung tx-05

Debra Fertel MD- Jackson Memorial
Si Pham MD, Professor of Surgery

Anas Hadeh MD, Cleveland Clinic, Weston

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Amy Tippins
Member
Username: Amytippins

Post Number: 61
Registered: 06-2009
Posted on Thursday, July 14, 2011 - 01:50 pm:   Edit Post Delete Post Print Post

It is claimed that garlic can boost the immune system that is why they say not to use it. I think it is marginally "to each his own" as it would be said. I take tons of herbal suppliments and also probably have at least a clove of garlic a day in what I eat (yes,eventually you stop having the garlic stink) and if anything it has made me healthier across the board. My surgeon and I have talked about the suppliments as a topic, but he has not looked at what I take...he trusts me not to do anything to crazy, I think. With all that said, my labs were great before, but now the transplant team is speachless about how good they are. They have said that they have never seen such perfect numbers consistently for 18 years only to improve with time. They have told me that whatever I am doing...just to keep it up. The only thing that has changed to make them better are all the supplements. Oh well...
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bill s
Member
Username: Bill_s

Post Number: 13
Registered: 08-2011
Posted on Wednesday, August 17, 2011 - 12:30 am:   Edit Post Delete Post Print Post

Hi Jay and others,
I'm a new member and have appreciated the many suggestions listed here. I got a kidney TX in Feb 2011 at UCSF and they (as well as my support staff at Kaiser told me I can eat any food product except raw/undercooked fish (or meat), grapefruit, and alcohol to excess. Raw veggies were to be thoroughly washed and if I wanted to take any herbal products (not the ones used for cooking) I was to check with them to be safe (as herbal and holistic food supplement products are not checked or certified by any organization nor are possible interactions listed). I drink green tea every day and they told me that was ok. I also drink products with caffeine as this does not affect me or my drugs either. I am currently taking 5mg Pred, 5mg Tacro, 1500mg Cellcept for immunosuppression and hope they will decrease these as they are causing me to be anemic and tired. For those who use herbal supplements successfully I say that if it works - use it because obviously you are controlling the quality of the products yourself. I do similar things with my other meds, modifying the dosages based upon my blood tests and blood pressure measurements. As I am unfamiliar with these herbal supplements I could not easily do what you do but I appreciate the info.
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16466
Registered: 05-2003
Posted on Friday, September 09, 2011 - 04:36 pm:   Edit Post Delete Post Print Post

on our Facebook group someone mentioned that their doctor said not to eat avocados.

I love avocados and looked this up and found this information.
http://www.heaven-and-earth-home-remedies.com/avocado-uses.html

Very interesting about heart and blood pressure medications. I wonder if these drugs have a warning on their medication scripts?
CF- dx at 2yrs. 2nd double lung tx-05
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Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16785
Registered: 05-2003
Posted on Saturday, October 22, 2011 - 11:01 am:   Edit Post Delete Post Print Post

Just created today a group on TransplantFriends.com

http://www.transplantfriends.com/group/transplant-do-s-don-ts

Join and share!
CF- dx at 2yrs. 2nd double lung tx-05 JMH
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Hollyak
Member
Username: Hollyak

Post Number: 1
Registered: 11-2010
Posted on Saturday, October 22, 2011 - 02:07 pm:   Edit Post Delete Post Print Post

Never drank much but now that the tx drs say no, I sure would love a good margarita!!

One no-no I didn't see was not to fill outdoor bird feeders. They said the droppings and feather dust around the feeders can make you very sick.

Also, not to be around young children...as a former elem. and preschool teacher, this is hard.

I think we all agree that if our donors were generous enough to give us this gift and a second chance at life, we have a duty, obligation, and privilege to take the best care of ourselves that we can.
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16790
Registered: 05-2003
Posted on Saturday, October 22, 2011 - 02:48 pm:   Edit Post Delete Post Print Post

Awesome post Hollyak

Welcome to transplant buddies:-) thank you for sharing about birds.

Bird dander scares me. It sticks to walls etc. and it is nearly impossible to get rid of it all.
CF- dx at 2yrs. 2nd double lung tx-05 JMH
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Deb
Member
Username: Deb

Post Number: 412
Registered: 06-2003
Posted on Sunday, October 23, 2011 - 06:11 pm:   Edit Post Delete Post Print Post

Remember to live life to the fullest and listen to your transplant team doctors and make sure that all of your doctors are on-board of the medicines you are taking. ; )
Kidney transplant 6/22/2002
lildeb
Judy Pope-Hamrick
Member
Username: Lynnh1463

Post Number: 1
Registered: 10-2011
Posted on Saturday, November 05, 2011 - 06:57 pm:   Edit Post Delete Post Print Post

Hi to everyone. I am new here so please bare with me. My husband is a double lung transplant (Sept19,2011) I have seen where some have said to stay away from kids. My question is how can one do that especially if they live with you. Our 7yr old and 1 1/2 yr old grandchildren live with us. We have been home for a week now and with this weather change of course they both have started the coughing and runny noses. So pawpaw doesn't love on them and he wears his mask and the 7yr old also wears a mask if he is in the same room as pawpaw. I am just at a loss at what one would do with children in their home. The money just isn't there to stay somewhere else for 6 months or how ever long one would say... I can say without a doubt I am a basket case, trying to learn what is normal and not. Thanks Judy
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16852
Registered: 05-2003
Posted on Saturday, November 05, 2011 - 07:19 pm:   Edit Post Delete Post Print Post

Hi Judy

Welcome to transplant buddies:-)

Worrying is not going to help although worrying is very natural of course.

Glad to hear your husband is back home. I would just tell him to wear his mask and wash his hands if he touches the children.

Can he have his own phone and bathroom? Replacing towels is important. If you have contact with the children then it is up to you to be as careful as possible.

Teach the children to use their elbow when coughing. Eventually, your husbands immune system will be strengthened and he will not worry about colds as much. It might be a good idea for you to wear a mask too especially if the kids are sick.

I know of a man who moved down into his basement when his kids were sick.

I will suggest posting a new thread on New on TransplantBuddies forum and sharing your concerns. I am sure there will be a bunch of good ideas for you to read.

Enjoy the new life that was given to all of you
Rise'
CF- dx at 2yrs. 2nd double lung tx-05 JMH
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Judy Pope-Hamrick
Member
Username: Lynnh1463

Post Number: 2
Registered: 10-2011
Posted on Sunday, November 06, 2011 - 10:13 am:   Edit Post Delete Post Print Post

Thank you, I appreciate it a lot. I am getting better about the worrying part, but I will always worry some. Yes he does have his own phone and bathroom, the grandson does stay in the basement until bedtime or when he needs to go to the bathroom. The 1 1/2 yr old can't stay down there so she is up here with us. I do thank God that the husband wears his mask and we do have the sanitizer, I think we need to take stock in it(lol). Ok you got me on the thread part, I have no clue as to how to do that. So you see I am confused about alot of things..I really wish we could have fixed the basement up for us to live down there for a while but it wasn't feasable. So we will do the very best we can and gladly accept any advice and gladly keep it in mind. Judy
Hostess Rise'
Board Administrator
Username: Rise

Post Number: 16857
Registered: 05-2003
Posted on Sunday, November 06, 2011 - 07:26 pm:   Edit Post Delete Post Print Post

Hi Judy

Within every main topic (New on TransplantBuddies) there is a link that says New Ask Share.

This is how you start a new thread.
Click on it and you will be able to attract many more people to respond to your post because they will see a new link title.

Click here- to start a new thread.

http://www.transplantbuddies.org/cgi/tbx/board-post.cgi?HTTP_REFERER=/3/3.html&action=form


See you around, :-)
Rise'
CF- dx at 2yrs. 2nd double lung tx-05 JMH
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Christian Gautier
Member
Username: Cgautier

Post Number: 3
Registered: 01-2014
Posted on Tuesday, February 18, 2014 - 07:30 am:   Edit Post Delete Post Print Post

Wear a mask on the Greyhound bus.
Christian Gautier
CF dx at birth, double lung tx 10/18/11

cldgautier@yahoo.com
Hostess Risť
Board Administrator
Username: Rise

Post Number: 18394
Registered: 05-2003


Posted on Saturday, October 08, 2016 - 09:02 am:   Edit Post Delete Post Print Post

Just a reminder to check this thread and please update with new ideas.
CF- dx at 2yrs. 2nd double lung tx-05 JMH
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