Weight gain after lung transplantation

Question

Dear expert team,
I am in the meantime a CF patient who has been double-lung transplanted for one year now at the age of 24 years. I am doing very well. However I have a problem in gaining weight since the lung-Tx operation. I am 176cm tall and weigh 53kg. Daily calory intake about 3000 - 5000 calories. As I am also doing sports and strength training, this weight is much to low for me.
The following steps have already been tested and done:
-diverse talks with dieticians did not lead to success. (Scalshake, Fortimel etc...)
- diabetes? Oral glucose tolerance testing and blood count in normal range
- Creon forte 40.000 increased--> no success (also before the operation no Creon was needed)
- thyroid function in the normal range
- talk with the physician in charge--> immuosuppresive drugs have no influence on the weight gain
As you can see I am a bit helpless and hope on an answer from you

Answer

Dear questioner,
here, good advice is indeed somehow difficult. I am a bit puzzeled about the fact that you, if I understood it right, did not seem to use Creon before the transplantation, that means your pancreas seemed to make enough enzymes. This is especially in lung-transplanted patients a rarity. The question comes to me, if your stool has once been tested on pancreatic elastase, in case this would be normal, you do definitively not need Creon and can with that not gain weight. The question comes to me how your stool is in detail: do you have again and again diarrhea or do you have normal stool? Furthermore one needs to know how your "belly" is doing: do you have pain again and again, abdominal fullness, etc. In case you have diarrhea again and again or other gastro-intestinal problems, one has to clarify this further, to search in the abdomen for tapeworms or similar things. Furthermore you report that your calory intake is 3000 - 5000 calories. This is a relatively wide range, and if you do much sport in addition, it is of course possible, that you need more calories effectively, and also more regular in a high amount. I would therefore recommend to you, but probably you already did so, to write down exactly every day, what you eat. Concerning the immunosuppresive therapy it is like this, that at least if you are taking cortisone/prednisone, this leads rather to weight gain, not loss. However, some immunosuppresive drugs can decrease the appetite and therefore for me rises really the question about the exact amount of calories that you take in. Furthermore the question arises, if you want to gain real weight or especially muscle mass (what I do assume).
Concerning this it is difficult after a transplantation to regain the muscle mass again, here the immunsuppressive drugs have a negative influence among others.
You see from afar it is relatively difficult for me to give you real good advice, I do really recommend to you, to write down exactly what you eat and especially how much.
With best regards,
Dr.med. Markus Hofer
Adult CF-clinic and lung transplant program
Hospital for Pneumology
University hospital Zürich, Switzerland

12.04.2011