This and That and Talk - My Transplant
As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all – a new life! We don’t always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.
Drop in and say ‘Hi’. You are welcome anytime.
What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?
Interested in more discussions like this? Go to the Transplants group.
@contentandwell, No salads? Is this a forever thing, or is it temporary? Are there any veggies or fruits that are OK? Or are canned in natural juices OK?
Rosemary
@2011panc, @contentandwell
I am sending this link to Mayo Healthy Lifestyle Page. You might be able to find some nutrition information or recipes that might fit your needs. There are a lot of interesting topics, so I included the full page. Plus some special diets on the Fitness and Nutrition section.
http://www.mayoclinic.org/healthy-lifestyle
Rosemary
@rosemarya I hope it will not be forever, I love salads and they are so healthy. I’ve found some dressings that don’t say “lite” but they really are lower in calories and some are very low in sodium, and they taste great. It’s Braswells. I love their vidalia peppercorn. The only ingredient in it that is not something a person would not use at home is xanthan gum and I don’t think that’s bad for you.
I can eat cooked veggies because then the fiber is softened and less abrasive. Same with fruits. I love oatmeal in the morning with strawberries but the only hot cereal I see on the list is cream of wheat and I think my beloved strawberries and blueberries are off limits except in very small quantities. They said to not eat things that are more than 1 gm of fiber per serving. White bread is fine.
How crazy is this? It eliminates all the healthy eating foods.
Juices are fine but I rarely drink them because lots of cals and not much better for you than sodas really, plus I love grapefruit juice which is off limits due to the immunosuppressants of course.
JK
@rosemarya Thanks Rosemary. I took a look but “healthy living” diets are pretty much the opposite of what I am forced to be eating now to control these digestive problems. Today I dared not leave the house again.
JK
@contentandwell, I admire your attitude with all of this going on. But as we have agreed before, there is no good in complaining because it is what it is, and we are alive. I really hope that you get this straightened out before too long.
Previously you said these digestive problems are from the immunosuppressants. I have not experienced any similar symptoms, but I do know that many people have varying complications during 1st year. Maybe this is just one of those bumps in the road; soon to be a distant memory.
It will be interesting to find out if this will resolve with the dietary restrictions that you are implementing. Did your NP indicate anything about the time involved. I have also heard of some people who need to be changed to a different immunosuppressant meds.
Hugs,
Rosemary
@rosemarya Thanks for the support and encouragement. Prior to calling the transplant clinic I googled both prograf and cellcept and discovered that they both can cause my problem. Prior to that I was thinking I had just developed a sensitivity to something I was eating and my main suspect was salads!
I sure hope it is just a bump in the road and that once it is settled I will once again be able to eat a more healthy diet, including salads.
In the meantime, the weather is getting nice, although a bit cool this week, we are heading to Bar Harbor in Maine for the weekend with another couple, my son and daughter are both in good periods of their lives, and life is good.
JK
@2011panc, I’m just getting caught up with emails. I can’t help but notice your comment about arthritis in your spine. Have you been screened for Ankylosing Spondylitis (arthritis of the spine but also other joints)? It often takes 10 years to get a diagnosis because before arthritis appears in imaging of the spine the symptoms can be “explained” away. There are great medications to manage future progression and pain so it is worth seeing a rheumatologist if you don’t have a reason for the arthritis in your spine. Either way, water exercise is great for arthritis of any kind so I hope you can enjoy adding that to your daily routine. Best of luck finding a way to keep moving because that is the key with arthritis of any type.
Well, @rosemarya I am not home yet. I stopped off to spend a few days with my son and we are binge watching Blindspot. I have never binge watched anything before so this is quite interesting to me. I expect to finish the last half of my trip home this weekend. I am surely looking forward to my own bed! We have stayed at GOL almost every time since I first went to Rochester, MN. Rarely they do not have room for us, but it has been such a Godsend for us to have a home atmosphere and reduced housing costs when we have to go.
Thank you @lcamino. I have not been screened for Ankylosing Spondylitis, nor has it ever been mentioned to me previously. I previously decided not to pursue seeing a rheumatologist because my diagnosis is osteoarthritis. I did a brief read on Ankylosing Spondylitis and it does and does not seem to match my situation. I will however pursue this further and I appreciate you bringing it to my attention. I do know that my body is following the course of my mother’s body in many areas and we both noticed the beginnings of arthritis in our teen years.
@contentandwell I also am on a low-fiber diet. I am also on a low-oxalate diet. I used to eat oatmeal every morning but cut back after being put on the low-fiber diet. After 6 years I now eat it occasionally, about twice a month. I eat strawberries with no problem. I also can eat nectarines, peaches, bananas and cantaloupe. I eat watermelon, but it does have a great deal of fiber so I pay for it later if I don’t take anti-diarrheal along with it. As long you are ok with the oxilates you should be able to eat any berries you like. Good luck!
@rosemarya I believe for me no green leafies will be forever, as I believe the low-fiber diet is required by my autonomic neuropathy.
@2011panc, How wonderful for you to get a few days with your son! I have never watched that show, but I think a binge with son after a week of testing sounds like fun.
Yes, same here about Gift of Life House. We have learned that, like the Mayo experience, it is difficult to explain to folks back here at home.
Rosemary