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On July 1st I saw a kidney specialist for the first time. The doctors who saw me when I was in the hospital during March were concerned because they found blood and protein in my urine. Thus, they wanted me to be monitored by a kidney doctor. He said I have proteinuria or protein in the urine which is abnormal. Because of it he has put me at stage III CKD, or chronic kidney disease. He has me on a new med at a low dose to help protect the kidney, Lisinopril. I will see him again in about eight-nine weeks. It is possible that the protein could be caused by the immunosuppressant, Prograf, I am on, but he did some blood work to see if something else might behind it. Is it common for people taking Prograf or tacrolimus to be diagnosed with proteinuria? Including those that did not get a kidney transplant?

Unfortunately it seems like nothing can be simple for me. One spot of my incision was bleeding a great deal and eventually it has gotten to where you can see a little bit of the stimulator there. It looks like the stitches for that area has come out. My surgeon said it is the result of infection, and there may be some infection causing another part of my incision to look as though both sides are trying to pull away from each other at certain points. I am already on two antibiotics to try to eliminate the infection. Part of the problem is that I, being so thin, do not have a lot of extra tissue to use for holding the stitching together. It also does not help that I am immunosuppressed to prevent rejection of my multivisceral transplant.  The surgeon also thinks that because he had to close the fistula and implant the stimulator, he was working in my abdominal cavity for much longer than if he did the two parts separately which allowed more time for infection to get in and develop. He had estimated the surgery would last only an hour and a half, but it turned out to be three hours. Plus, to fix the fistula, he had to work with the bowel which itself has many organisms that could potentially result in infection. It is frustrating, but the surgeon has set me up to have the stimulator device (but not the leads) taken out this Monday. He may also work with the other parts of the incision to get out any infection. Then I will have to let the site heal completely which could take a little while because the immunosuppressant I take can make it harder to heal. Once the incision has healed properly, he will then put in the gastric stimulator again. He hopes that by just doing that and nothing else, there will be less chance of infection forming. Has anyone had similar trouble getting an incision to heal after an operation due to infection?

One major concern right now is my nutritional status. I was about 92-93 lbs. before the surgery, but I am now 91 lbs. as of this morning. Not having a working stimulator makes it harder to get in the nutrition that I need, and I worry I might lose too much while waiting for the healing, something that probably makes me require more nutrients than I was getting. Fortunately the doctors have some ideas that might help. Dr. Abell might put back in a temporary stimulator until I can get one implanted underneath the skin. Another possibility is getting a g-tube that has an extension which goes into the small intestines and thus bypasses the stomach. It would be good if my intestines would let me get in more than my stomach can tolerate. I can do this only because the surgeon was able to close up the fistula in this most recent surgery.

Thank you again for making me feel so much a part of the community here. Even though I have been set back some, it helps to remember that there are others who care and who give me hope. I am thankful to just be alive considering that I might not have been here if it had not been for a multivisceral transplant almost ten years ago. Thanks for being with me along this journey, and may we walk many more roads together and thus not be alone. I keep this community in my thoughts and prayers and send great gratitude to God because of how much I have blessed by everyone here. I am sorry if I have not been on this site much recently, but due to the surgery and fighting off the infection, I have been much more tired lately and just have not felt up to being on the computer long. I still appreciate all that you all do for each other. Many hugs. 

 

Warm regards,
Bobbiejo     

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  • Oh Bobbie jo, you're really going through the wringer right now, aren't. As someone has said, prograf can cause kidney issues. The good news is that it is typically fairly slow in most people.  I wish there was some way I could help. As for being able to get more nutrition, many years ago when I had so many problems with my gastroparesis, I ended up going to a acupuncturist. I hate to sound racist, but I wouldn't go to see a native North American for this - I went to my Chinese guy who was a medical doctor in China and who had also studied TCM in Japan. He was a pain specialist (dealt mainly with pain and joints but knew a tremendous amount about nerves) and for about a year got me eating again. It only took about 4 treatments to get my stomach moving again. I'm really not sure if this would work with transplanted organs, but it might be worth a shot with minimal potential side effects.

    I'm praying for you.

    • Thank you for your prayers. I am so glad that you found something that helped you out so much when you had gastroparesis. It would be great, if the other plans of my doctors do not work or just not enough, to have a backup plan I could check out to see if my insurance would cover it and if there are any doctors in my town who would have knowledge and experience with using acupuncture .  At this point I am willing to try most anything to try to keep up my nutrition up and thus prevent my weight from falling more as long, of course, it is approved by my transplant team. I will do some inquiring about it.  Many hugs are being sent your way on  the wings of hope.

      Warm regards,

      Bobbiejo

    • I believe in Acupuncture and have had many sessions post transplant (within the first few months). I am not afraid of anything like that.

      • what  kind of symptoms or other reasons made you try the acupuncture? Did the acupuncture provide relief in all of these or were there certain problems it seemed to help more than others? Thanks for always being so willing to share.

        • I have tried acupuncture many times pre and post transplant. I believe my acupuncturist at the time tried to balance my immune system when I first got diagnosed with EBV.  Since I only had a few treatments it helped but I would have had to have more treatments and he was unable to see more often. He was a great acupuncturist. He went above and beyond to help me.

          When anyone is sick, if that person can relax, have faith in that they will get well, it makes for an overall improvement in health. Nothing can act alone-just my thoughts.

      • I firmly believe that my guy helped keep me off dialysis for a very long time. He was quite up front telling me that he couldn't fix what's wrong, but could help me feel better. My creatinine was outrageous by the time I started dialysis and almost every medical person I meet was astonished at how high it was before I started. He was a brain surgeon in China, and couldn't be bothered being forced to go back for an undergraduate degree, then an MD, and then residency again when he came to Canada. My gain in adding someone excellent to my medical team.

        • Was this dialysis before your transplant? I am sorry if I am a little bit confused on your history. I think my brain has been a little bit more muddled recently perhaps because of all the new medications or because I lean that way anyway, often being absent-minded. I am very glad that you found someone who was able to help you avoid dialysis for so long. I had a small taste of dialysis when I was in the ICU shortly after my transplant, and they were not one of the best memories. I am glad your efforts to find a good doctor paid off well. Hugs.

          Warm regards,

          Bobbiejo

          • Yes, my dialysis was for 1 year prior to transplant. The dialysis was in 2001 - 02. I saw my acupuncturist from about 98 - 2000.

            Cora

            • I thought you said you had the gastroparesis after your transplant due to the Prograf? So did you not get treatments of acupuncture for the gastroparesis after your transplant? Or did you also have gastroparesis before the surgery? I apologize if you have said and I have forgotten or gotten your words confused.Thanks.   

  • Bobbiejo, as alway you have my Prayers and best wishes for your fast healing. 

    Take Care

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