Hi all, this is my first post here.
I had volunteered 9 years ago as a donor for my niece who was diagnosed with IgA neuropothy at age 28, when she went to the emergency room with what she thought was an asthma attack because she couldn't breath. Well she was going into congestive heart failure from all the fluid in her system from failing kidneys. She had graduated from nursing school and had been hired 6 months previous by the UW Hospital in Madison, Wi. She didn't have a clue this was happening. She ended up being on dialysis for about 1 1/2 years. This took some time to step forward as having 3 active teenagers, owning and working in a very physical job, and having a husband that was not real open to the idea. I was one of two volunteers at the time. The other person was a co worker of my nieces dad, my brother in-law. He had a closer match then myself by one marker so he was selected as the donor at that time. But I always said, I would be her ace in the hole when needed in the future.
So nine years later, she needed another transplant. However, I am now 59 1/2 and she is 37. They would like to find a closer age donor of course. Our daughter also volunteered this time. She was a perfect match! But, the CT scan showed she has a singular kidney! Our youngest also has this but was discovered when he was in sports in high school. There were a few others volunteers, but, they had medical issues that kept them from donating. My niece couldn't cut a brake! They asked if I would consider being a chain donor to find her a better match and I said sure. But, after 6 months on dialysis, she and her doctors felt that I would be a viable donor for her. She had undergone a treatment a year previous that suppressed her immune system so as to stop her body from rejecting her first transplanted kidney, I had the same antigen and her blood had changed enough, form that treatment, that I was a better match than previous.
When it was finally decided that testing went very quickly. Found out that for 59 1/2, I was pretty darn healthy. A lot of younger people hadn't been. The co-ordinator was wonderful as well as all the others that I was in contact with. Within a month all the testing was done, waited about 2 weeks to get the final OK from the board, BP was the issue. BP does run in the family, two olders sisters on meds, year previous physical was fine, but, it was sometimes high during testing. They weren't sure if it was white coat hypertension, or caffiene. I was told that I may have to take BP meds after surgery as a result of having a singular kidney, I was fine with that. It would be inevitable anyway so, sooner than later didn't make much differnce to me. Keep in mind, my BMI was right at the cut off point, 25. And hubby and I had become quite the couch potatoes. Anything higher, and I would have had to loose weight before surgery. The OK came down but then the surgeon my niece wanted for me was going on vacation, so it was put off a month. Then as she was talking to the co-ordinator she noticed an empty slot in 10 days! Could I be available that soon? Well, I'll make myself available.
Donated at the UW Hospital, Madison, Wi. Thursday,March 10, 2011. National Kidney Awareness Day! We were scheduled for the second surgery of the day. I was admitted at 9 a.m. and went into surgery about 2. They were a bit behind from the first surgery. I was very calm, BP was great, staff was great. The entire donation process was very positive, wonderful people and doctors. They gave me a shot then in about 15 min. I kissed hubby good bye and that is all I remember until waking up in my room.
We have 3 children by natural childbirth, no drugs. The only surgery I have had was a tubal ligation after the third birth. So the naval discomfort was the same from that, sharp, stabbing but tolerable pain, and my daughter had a C section so she had prepared me for the "delivery" incision discomfort, hard to stand up straight and take normal length steps. Didn't walk until the next day in the later afternoon. I wasn't prepared for my entire abdomen to be soooo puffy and swollen and droopy! Oh would it ever be normal again! But then, they do pump you full of fluids, you are puffy all over from that. The floor personal were gentle and concerned. I had a lot of nausea, dizziness, terrible dry mouth, and was soooo smell sensitive! Food didn't interest me at all, water was hard to even drink. I had lots of gas sounds so the staff was happy about that. Pain pump and catheter came out on Sat. I had the shakes bad when I was up and using the bathroom, hard to relax and do what needed to be done. They did keep checking my bladder with the portable ultrasound. Had to cath me once in bed. But then things finally started working and they were happy that I was emptying my bladder very well each time. The collection amounts were good as I had finally started drinking, but food was still tough to stomach. Smell sensitivity lasted at least a month!
On Sat evening at the 11pm shift change, my new nurse checked my vitals. You don't get much sleep as they are always checking vitals and drawing blood. My BP was really spiking, it had been running a bit high right along after surgery but then you have some pain to contend with, so gave me some meds, but kept checking frequently the next two hours. Sleep was hard to come by as it is on that floor let alone monitored for something like this and trying to settle down afterwards. Then they wake you up again for blood draw at 4. Soooo, I was not feeling great the next day. They kept me another day to moniter the BP. Ok. Sunday was up walking, had my family bring me food from the cafeteria as the plastic covers on the food they bring you has all the smells of all the food that has ever been under them and I just could get beyond that. So I was starting to eat salads, chicken salad, oatmeal, jello, that kind of food if family brought it in to me. That night, same thing, BP really was high that night. They gave a med that I had a bad reaction to. My heart was racing and irregular for most of the rest of the evening. I ended up with a terrible migraine. I know what it is and it is in my records to never give that drug again. I have never an alergy to anything previous. By that time I had had it with no rest, I just wanted to go home. I promised to go to my regular doctor to follow up on the BP issue. So by noon I was discharged. They sent me home with a BP cuff to moniter at home.
My niece was also released the same day, but later, they were removing her dialysis stint from her chest as well that day. My "rehomed" kidney was performing wonderfully, right from the operating room. Her creatine was lower than mine already!!!
My co-ordinator called me on Mon and asked if I would be able to come into the clinic on Thursday at the UW to follow up on the BP with a specialty doctor. I arranged for a driver and went in. They were very concerned about the high numbers and they were indeed high. 189/102 a couple of times since getting home and was slightly higher in the hospital those couple of nights.
I never had symptoms before this other than occasional night sweats, but then having gone through menopause that was nothing new. And of course, when at the hospital you can't take your own vitamins, eat as you normally would at home, nor could I tolerate coffee after surgery, still don't care to ever have another cup, and I loved that first cup in the morning. Strange. So my entire body chemistry was out of wack. Didn't have any of my regular dietary intake to counteract the BP issue that I didn't know I had. The not being able to eat sure didn't help.
So they started me on low dose BP meds, Calcium channel blocker, and a diuretic. They covered all the expense for these meds until at least the 6 month check up. They were very nice and very concerned about my welfare. I seem to be rather drug sensitive so low dose meds, watch my diet and getting more excercise was the way to go.
Then on that Sat. I came down with some viral thing. Could not eat a thing, stomach hurt so quit taking Tylonol for pain as well. Even more smell sensitive than previous. One degree below normal temp, cold to the bone. That lasted an entire week, lost 10lbs that week. Even had a low blood sugar episode one day. So, having that and starting meds in the same week wasn't so good. The meds really made me tired, my sister had warned me about that part of it, but said it does pass as your body gets used to the meds. Then finally started to feel better the following week. Little by little. Would walk laps in the house, weather was lousy yet that time of year.
Stool softeners gave me gas and Miralax caused bigger harder to pass stools. Probiotics, I used Colon Health, worked much better and was gentler on the system. TMI perhaps, but, if might help someone else.
I had help from family the first 2 weeks I was home, after that I was on my own during the day. But they did everything when they would get home in the evening for about the first week after that, then I slowly started the cooking, as I could stand the smells, cooking meat and making coffee were the worst, and other household work as I felt I could.
I have lost 15lbs, walk 2-4 miles most days, BP is 110/73 average now. Might ask about getting off meds just as a trial at 6 month checkup. But if not, that is ok as they do protect the kidney from future damage as well.
I have since read a lot more about donation, results of and how it will effect your life, found this forum and have lurked here for sometime. Wonderful information here and lots of good people. So now that I am more informed that before the actual surgery I would still do it again if I had a spare!
Hope this helps others to please consider strongly on giving this gift of life to someone, the return is well worth the effort.
Topic: Living Donors: What was YOUR experience like? (Read 13626 times)