Today marks two months since Tim underwent his kidney transplant. It has been a busyy two months with post operative visits and learning the new medications and adjusting to a new lifestyle. Things are going extremely well. After the transplant Tim has seen the doctors twice a week and has now graduated to twice a month. We had a little bit of a scare in the beginning because his creatinine levels were elevating when we had his dialysis port taken out but the biopsy showed that Mr Bean (our Kid Kidney) is working well and is very happy. We obtained assistance with his prograf medication. The social worker helped us apply for a grant which gives Tim two thousand dollars a year to help pay for the anti rejection medications. The Prograf Medication ran about 400/a month and it was something that we could not afford. The 12 meds he is on a day run about 150/month and on top of the prograf it just was not happening. I am grateful for their generosity and assistance in their continuance help with us.
Although Tim's kidney is functioning well he has had some issues with other things such as headaches and getting sick after some meals. We tried switching around some medications and tomorrow we will be going to yale to get an endoscopy to make sure that everything is okay with his digestive system. With Lupus it can attack any organ at any time, and we have to constantly check everything is something seems a little off. We cannot have another organ turn into scar tissue like it did his kidneys. We have to be very careful and very cautious. With Lupus stomach paralysis is very common. This will rule that out or give us a better understanding on what we have to do to help Tim be able to digest and hold down his food. It could also be the medications but because he was doing this before his transplant and even before dialysis we are not sure that it is medication related. With his headaches I have researched a diagnosis called Intercranial Hypertension which is also common in lupus patients. I am going to talk with his rheumotolgist to see if this is something that Tim could possibly be going through because he constantly has headaches. When he does we check his blood pressure to see if it is low or high but since April 7th it has been pretty stable.
I started my new Job at Yale New Haven Hospital about 3 weeks ago. I like it there and my coworkers are very nice. I have nothing negative ever to say about YNHH and the days go by quickly. I am starting a surgical technicial program in September so hopefully I can get a job working with Transplant and organ delivery which is what I want to focus my career on. I know it hits close to home with everything that is going on with Tim but I feel like I need to give back and utilize my interpersonal skills and knowledge to help out others who have gone through the same things. I enjoy talking to the patients and being an advocate. Anyway I know a lot of people have been asking how Tim was doing so I thought I'd put an update on here. I hope Tim has continued success and these issues can be resolved soon.
~jackie
