Looking for what to expect as I consider Kidney Transplant
Hi, I was wondering if anyone can give me more info on what to ask the transplant team when I go for my evaluation. I'm struggling with whether dialysis is better or a transplant. I know any surgey has risks.
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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
@fauneconner , @ mlmcc - I agree with you mlmcg however I am cooking for both my children so they are eating "regular" carb and protein and the veggies that my husband and I eat. Having said that, they are proud of the healthy changes we are making so they are supportive of our new eating routine. When we ate out this weekend we just made wiser choices and ate half the food. I forgot to mention Faune that Jenny Craig's sodium is 2000mg or less per day (quite low) and they have type 1 and 2 diabetes menus. It is also quite low protein (acceptable for my poor kidney function) but still sufficient to sustain you. The diet is planned by dieticians so it is the most balanced I have ever eaten which for me means more lean protein, less fruit, more veggies and obviously appropriate portions (the latter being my worst transgression).
Lynn, forgot to add that you must be under 40 BMI for transplant. Blood sugar cut off as a donor was no higher than 110 fasting. They also discovered that I had a small hernia near by belly button but they told me the surgeon could repair that during the transplant. I am sure it was t he best physical I have ever had! I also asked them questions re pain meds following surgery.I spoke with the pharmacist re those. ; I know they included usually 3 doses of toradol, then oxycodone or vicodin gradually weaning down to tylenol extra strength 3 times a day.. You might also receive injectible heparin while in the hospital. Donor is usually sorer than recipient due to muscles that are cut thru or intestines rearranged to have access to the kidney. Knowing Mayo any pain is well controlled. I anticipate more soreness than anything as a donor.
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@fauneconner - Once again, a plethora of information I'm so pleased to receive.! My BMI is in range but I'm still loosing weight so I hope it keeps going down to help with my recovery and overall health. I guess it is a good thing that they can fix your hernia during the transplant surgery to avoid having two surgeries. Interesting to know that the donor has more pain than the recipient. I never knew that their intestines are rearranged! The more I learn about this process the more incredible it becomes. That helps me understand why the donor is to stay off work for 3 weeks, even if they have a desk/office job. Will you have someone at Mayo to take care of you and another person to care for your husband? Just wondering how that works since I think you both need caregivers.
Last summer I heard a Mayo transplant surgeon talk at a PKD convention and he said the surgery is just simple plumbing and it's really not a big deal. He was being humble and downplaying the critical role he plays in the process but as I learn more about it the whole process it blows my mind. I'm so thankful for the first donor, recipient, and surgeons that were willing to take the risk and try transplanting a kidney!
Yes, Lynn, Mayo does over 600 kidney transplants a year. They are definitely #1. As far as care givers I have a friend who will stay with me the first week and after that I will hopefully be able to return home due to our pets. Bill will probably have to stay 2-3 weeks and he will have to switch off friends I suppose to have someone with him. They want the care givers to go to the pre-op, post op meetings I think. It is more of a companion type thing in case you should need something or have someone drive you to your appointments, etc.
Thanks for trying and being happy with your new way of eating. Once you start it you do not want to go back to what you once did.
If portions are your problem use smaller plates, luncheon works best for me, and salad forks, you cannot take as much food at one time as you can with a dinner fork. Smaller bowls and forget that large spoon for your soup, I like soup cups.
mlmcg
Support from friends and family is essential for me. I don't know if I could have come this far on my own sheer willpower!
Rosemary