I would like to send my deepest thanks and appreciation to all transplant caregivers.
We could not carry-on without you.
Rosemary

February 2015

Finding a kidney that not only is a match but the right size for a four year old is not easy. Our first surgery is always scary, I was 22 when I had my first one. How do you tell a four year old about surgery and all the meds they will have to take, in liquid form. Then there are the trips to see the doctor or doctors also having someone stick a needle in your arm every time you turn around. People tell me that they do not know how I have made it through everything I have been through. Compared with you I have had an easy road. Remember, if you can help one family with a young child through their process you are fortunate and did your job.
mlmcg

@fauneconner - Thank you so much for sharing Faune! I keep hearing wonderful things about the process at Mayo so I know that part is a solid decision for me. Do you know why someone would be deferred as a donor? I've not heard of that part before. Does it mean they could approved in the future?

I'm relieved to hear that you are relieved and things you were worried about where insignificant. It must be challenging having to make the trip (flying) for all of this. My donor and I will have to do the same as I live two plane flights from Mayo. How many days did your evaluation take? It is also very good to know that the test results are valid for 18 months. I did not know about the left kidney being preferred either. So amazing that an organ transplant is even possible!

I can't thank you enough for sharing as every tidbit I learn I can share with potential donors and my husband so we are better educators to those who ask, and we are not having to take in so much information at once when my time comes.

Please don't hesitate to share the results of your evaluation if you feel comfortable. I'm so glad it was an encouraging visit. Try to get lost in your life to get it off your mind as you wait (easier said than done I'm sure!).

@ca426, @mlmcg - What I have learned is that diseases manifest themselves differently in each person, thus no two cases are alike (similar but not exactly the same). Medicine and caring for our bodies is as much an art as a science and we all respond differently. It might not be a comfortable thought but there is are a lot of gray areas in medicine doctors need to make many judgement calls. I don't believe there is ever anyone is "our same situation" because everyone's body is different, responds differently to medicine, food, and treatment, has different stressors in life etc. The human body is so complex that I have come to respect it and be in awe with what doctors can do, even when sometimes we wish they could do more. I'm just so thankful there are doctors that are willing to make the hard decisions.

So well put!
mlmcg

Hi, Lynn Testing for me was a full 4 days but I did slip in an additional appointment on Thursday that wasn't kidney related. I started at 6 am Monday morning with blood work--15 vials. Also that was the day for the 24 hour urine test which I am the classic cliche "I failed my urine test!" Actually I didn't produce enough volume because I was dehydrated from traveling, fasting the night before for blood work and then had so many appointments back to back that day I did not have lunch and didn't drink like I should have. So they are mailing me a container and I will repeat that test here and send back. By deferral I mean if there is something else they want to check on or consult with a doctor on. I had an old autoimmune sarcoid scar at the bottom of my right lung and they just wanted a pulmonologist to review it. That plus redo the 24 hour test would create a deferral.

Most of the tests were fairly simple and short--ECG, chest xray. The renal clearance test took a couple of hours in that you had to drink a certain amount of fluid, pee and then have blood drawn from your arm. They do that two times in a row.

The hardest test to me was the stress echo cardiogram. They take resting echo pictures and then put you on a treadmill at an ever increasing incline and speed. You go to your max or what they determine is high enough for your heart rate to go and then pull you off. You have 5 seconds to plop down on a bed while they take ultra sound pictures of your heart. You have to hold your breath at certain points and that was hard to do when you were out of breath. That was also the steepest incline I had walked since my total knee in Feb.

The CT was easy. Contrast was injected so they could see blood vessels,etc. and it was very short. They do your abdomen and pelvic area. Several of the tests used contrast as a matter of fact.

I also had to do two other small urine tests as well but those were nothing.

As far as meetings I meet twice with a nephrologist, two social workers, a finance person, a dietition, a pharmacist, two nurses, my donor nurse, a surgeon and watched a film on the transplant procedure. Found out that donor and recipient are on the same floor in Methodist Hospital in private rooms and this floor adjoins the transplant center on Gonda 10. Donor usually stays 2 nights in the hospital and the recipient 4-5 depending on how they do. Their new kidney is implanted in their abdomen. So 4 days for tests and meet with a nephrologist as the last meeting to go over test results. The team then meets the following Wed at 2:30 to discuss cases and approve donors and recipients based on results. Your recipient or donor nurse would then call you and tell your their decision. Hopefully I passed as they did not see any red flags or deal breakers during the evaluation. But, we will see what happens. I am trying to lose more weight as well as keep my blood sugar at good levels.

Faune

Well said!

@fauneconner - I can't thank you enough for all you just shared! My husband and I learned so much and I feel like I can better educate those who have offered to be tested to be a donor for me. I've been trying to be patient and wait until I meet the transplant team but I get asked many questions that I don't have answers to but now I do! I also found it interesting to learn where the transplant center is located because I visit the Mayo Clinic monthly and often wonder where I will be for the transplant. I will check it out next month as I have to stay overnight so I will have extra time.

I have done a stress echo and it was difficult and I had not had a total knee replacement! I hope the latter is going well for you. You have so much courage to undergo a total knee replacement and within the same year sign up to donate your kidney!

I want to share with you what my husband and I are doing to loose weight. We are both doing Jenny Craig and I share this because we have had very good, and quick, results. It is not cheap but if it works with your budget then it might help you since you have a time limit. We decided to take the plunge since I have a lot of weight to lose prior to my transplant. We are on week 8 and I have lost 16.5# and my husband has lost more. Having said all this, there are cheaper options in the freezer section at the grocery store. It has just made the process simple and fast (I have averaged 1-3 # per week).

I wish you all the best, and your husband too. Please stay in touch.

Any time you have to make changes to your life style (diet) it is best when your live alone or everyone eating at  the same table eat the same food, if friends and extended family do not honor your choices you do not have to eat with them.
mlmcg