About Me

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Chicago, Illinois, United States
Make Life Happen! Welcome to all of you who visit. If you are looking into becoming a Living Donor and would like a detailed idea of my journey..scroll down and begin with the older posts first. I welcome any questions or topics that you would like to know more about.

Thursday, May 31, 2012

The Two Year Check Up

Well it was my final two year check up with Northwesten Hospital this week. I was anxious to have all my testing done which included bloodwork, creatine level check and of course the urine test (which I can perform at a moments notice). I was thrilled to get the results that my creatine level was at 1.09 which is pefect and actually lower from the immediate checks ups following my kidney donation. Naturally because I am OCD I made a massive list of questions that I wanted to ask since this was my final visit. It's actually something I do for any appointment and I suggest you do the same. I have a tendency to go in 80 different directions at once and always end up missing information that I wanted.
So once I completed all my testing and had time with the surgeon as well as the PA, I began my grilling of questions. The fantastic thing about being a living kidney donor and mentoring to others is that you learn so much about the after thoughts and concerns of donation. One thing that I was a bit relived to learn was that I had always heard that food poisioning could be fatal for those with one kidney. The truth is...it's not the food poisioning it's the severe de-hydration that can come with it that can truly be a threat to your one kidney. Here is a good rule of thumb... if you can't keep water or ice chips down in the first 24 hours then you should see your primary care physician and most likely have an IV of saline to re-hydrate. This can actually apply to any flu or severe de-hydation situations in general. I had also heard that a diet too high in protein was not a good thing. What I did learn is that if you maintain a normal healthy diet that's all you need to be concerned about. If you are however, a person who has numerous protein shakes and protein bars on top of a diet that is just high protein, it can be extremely difficult for the kidney to handle and can create issues with the one kidney. Ahh yes....a photo of the man who took my kidney
My incisions are barely visible and I have to thank him for that everytime I see him. That's the least I can do since the first words out of my dry mouth to him in re-covery (and I am sure my breath was not tic tac fresh)....Did it work? Yes it did....Did it work? Yes it did...I think I asked it at least 10 times. Of course before leaving the hospital two hours later after seeing the entire transplant team that I had, I of course had to then read my list of things that I would love to see improved for the living donors. No, I am not shy....but they smiled and nodded the whole time so I feel that I compelted my mission on that. Two years pass by so quickly that I have yet to figure out why the transplant centers don't follow the donors on an annual basis for the duration of their lives. I do believe that donors deserve at least an annual creatine level check on an annual basis. I stand firm on that and now that my check up period with the transplant team has come to end it will now be my responsibility to make sure that I have my creatine level checked by my primary care physician on a regular basis and I hope you all will do the same. You have given the gift of life and it's equally important for you to be responsible for making sure that you maintain your good health. I would also think that follow up surveys and longer monitoring of living donors will provide very important data for those considering donation now and particularly in the future. Quantative surveys should be implemented (even mandated) so that we have more concise, clear information on being living donors. Although I'd like to think I am still in my thirties (my mind is) but our bodies change with age and because of our donation it truly is important for us to be responsible to ourselves. Especially your blood pressure. I lucked out on that because I have always and still do have low blood pressure but hypertension is something you should check annually as well. Ahh Sara the PA who has answered at least a hundred questions for me....
Sara has been incredible every visit I've had in answering my numerous lists of questions and never rushing me through the exams. I was very lucky to have her as part of my team and she answered each and everyone one of them. Because I feel so fortunate that my Living Donor experience has been such a positive one...I urge anyone considering becoming a living donor to truly put in the time and research in deciding where they want to go for their donation process. For me personally, regardless of where I live, I would not want to be at a facility that didn't have an extremely high level of experience in living donations. You can look up all of the the transplant hospitals on the OPTN site and it will tell you how many deceased donors transplants they have performed as well as how many living donor transplants they have done each year. So now I continue on having mentored 25 people through the donation process... and hope to again provide additional information for those who are considering be a living donor as well as continue research projects and making the Living Donor experience a better one.

Saturday, May 19, 2012

Two Years and always active in improving the Living Donor experience

I can't believe its been two years since I donated a kidney. These two years have been fantastic for so many reasons. As a golfer, there is a saying that you meet then nicest people on the golf course (unless you've had to witness some of my shots). Well you meet the nicest people in the kidney world. It is amazing how many friends I have made along this journey. In two years I've had the pleasure of mentoring twenty three people through the process and I hope it continues to be many more. One thing I would like to clarify is that the word altruistic donor really referred to in the medical community as a non-designated donor. My opinion is that anyone who donates a kidney to someone they know or someone they don't know has given a gift that is beyond compare. I continue to keep very active in researching stories and news for not only donors but also from the recipients side. Now that I have two years under my belt, I can see where there are some major issues that need to be addressed for living donors. UNOS mandates that all transplant hospitals must provide a two year follow up program to living donors. There is no question in my mind that this time period should be extended on an annual basis for the lifetime of all donors. Why? Because people who donate should have the same follow up care that a recipient has and more importantly I would think that the transplant centers would want to follow donors for gathering data and making it possible for future donors to have have as much information as possible to make their decision on donating. Secondly, once the two years have passed it then becomes the responsibility financially to continue monitoring their own creatine leves and kidney well being. This issue does not translate that I have any regrets...I would do it again. But because of my passion amd belief living donors are the only way to decrease those recipients on the national waiting list, I believe there should be more responsibility in monitoring the donor. One of my biggest concerns is that if this is not implemented that there will be many living donors that do not continue to check their creatine levels because they either don't have the financial means or insurance, or that they just don't continue to monitor their own well being. Because you have to go through rigid medical testing prior to being cleared as a donor is very important to both you and the recipient. I was thrilled to kniow that I was healthy enough to be a donor. But don't allow a false sense of security in that. We age...our bodies change in the circle of life and follow ups are crucial to your well being. Next week is my two year follow up visit. Trust me I have a list of questions to ask when I am there since this will be my last check up. Remember that you have given the gift of life... now its time to be responsible to yourself for you own well-being!