Kidney4dom's Weblog

Thank-you

kidney4dom — Thu, 24 Jan 2008 18:49:09 +0000

Thank you for visiting Dominik’s weblog. This site will help answer many of your questions reguaring organ donation. If you scroll down the right side of the page you can click on the different stories we have done and there are resources where you can learn more.

Our Miracle Baby

kidney4dom — Thu, 06 Dec 2007 15:27:04 +0000

The past 3 years have brought Jim and I many emotions, but the greatest being LOVE. We married in 1994 and from that day on I was blessed with a beautiful, energetic,affectionate little girl. Kailey was Jim’s biological daughter and I was able to help love and nurture her from the age of one. As the next few yrs passed we decided we wanted more children but that did not just ”happen” for us. In 1998 we went to a fertility specialist to seek a professional opinion as to what steps we could take to help us conceive a child. I was found to have poly-cystic ovaries and was started on a fertility drug. After 10 months of taking the medication and going to Duluth and Minneapolis for advice our chances of having a baby were getting slimmer. The winter of 1999 I underwent an experimental surgical procedure and in March of 2000 we received wonderful news, we were going to have a baby boy. Casadonte was born Nov. 3rd, 2000. He enriched our life and we felt our family was complete a healthy girl and a healthy boy to love and cherish.

Over the next few years Jim and I talked about having more children but felt we should be thankful for the kids we had. Deep down I was really wanting another baby but Jim did not share the same feelings. He felt he was much too “old”-his favorite saying was he really did not want to attend his child’s graduation in a wheel chair. However I am 9 yrs younger than him and did not feel that should be the deciding factor. So I prayed to God to let his will be done, I was not going to seek help for infertility but also was not going to take measures to prevent a pregnancy either. Then the fall of 2004 I went to the Dr. for some gynecological issues and was found to have a large fibroid, I was 34 at the time and the Dr. gave me my options but really led me to believe that a hysterectomy would be my best option. I remember leaving the Dr.’s office-it was Nov. 10th- and sitting in my car and crying, crying so hard that I was not able to drive. I sat there and prayed and told God that I really wanted another child but understood if this was not his will. Then I called Jim and cried some more and he told me to come home and hug the 2 children we already had. We prayed about the hysterectomy and decided to have the surgery in January 2005. I had excepted the fact that we were going to be a 4 person family and decided that I wanted to advance my career. Then on Dec. 27th, 2004 I was not feeling well- the symptoms I was experiencing were a bit familiar, similar to the ones I had experienced almost 4 yrs prior. So off the Target I went to buy a pregnancy test. I remember sitting in the bathroom, looking at the test stick and saying this absolutely can NOT be right. It has to be a false positive, I’m scheduled to have a hysterectomy in 3 weeks. I was home alone, Jim and the kids were in Southern Mn for a hockey tournament. I could hardly contain the butterflies in my stomach but decided to drive back to Target and get another pregnancy test. I could not wait to get home to take the test so I went into the restroom at Target and took it. I can not put into word how I felt, I was elated, scared, excited, nervous but mostly over whelmed with pure joy. God had answered my prayers, I put my faith and trust in him whole heartedly and he answered with a miracle. On my way home I stopped at my sister-in-laws house, I wanted Jim to be the first I told but was a little nervous to call him at the same time. So I told Kathy first, she reassured me that Jim would not be “mad” as I put it. I went home and gathered up the courage to tell him we were going to have another BABY!!! I called him on the cell phone, he was at the hotel, and gave him the news. He was speechless, he did not say one word and hung up on me. The phone rang 5 minutes later and the voice on the other end was one of happiness. I could not wait to start planning for the birth of another child and Jim shared my excitement.

The morning of January, 15th I woke with a heavy heart, I started to have cramping and spotting, I called the Dr. and went in immediately. I refused to believe that this gift from God was going to be taken from me. An ultrasound indicated a strong fetal heart beat and I was sent home to wait and see what God’s plan was. My symptoms never got worse but did not get better either, for the next 5 months I dealt with symptoms of a threatened miscarriage. At the beginning of the second trimester my Dr. put me on bed rest and sent me to the University of Minnesota for a level 2 ultra sound. Once again we were given disturbing news, the ultrasound indicated that my baby “boy” had abnormalities in his abdomen, It was too early in the pregnancy to know exactly what was going on but the neonatologist gave us some possible diagnosis—cystic fibrosis, Downs syndrome or a congenital kidney problem -to name a few. My pregnancy was followed closely with weekly clinic visits and monthly ultrasounds. This time home in bed gave me the opportunity to reflect on God’s word-that he would never give me more than I could handle. At the end of April, now in my 17th week of pregnancy, I was back in Minneapolis for another level 2 ultrasound. The Dr. sat Jim and I down and explained that we were going to be facing some difficult times ahead. Our baby had bright white spots in his abdomen and his kidneys were abnormal, very small with a large amount of fluid around them. It was also around this time that I started to experience some pre-term labor, deep down I knew that this was going to be a trying time, but held strong to my faith in God. June 8th, another trip to Minneapolis for a check-up and ultrasound but this time I was not going home. I was 28 weeks into the pregnancy and we were told that if Dominik was not delivered soon he would die as there was very little amniotic fluid, all indications that he was in kidney failure. I was placed on a fetal monitor to be sure there was no emergent fetal distress, if Dominik started to show any signs of distress they were going to take me to the O.R. immediately. Since he was stable for the time being they wanted to help mature his lungs before delivery. I was given betamethasone every 24 hours for 2 days to help mature dominik’s lungs. I remember laying in bed and feeling numb, not knowing what to expect. One of the NICU Dr.s came in to explain what we could expect after the delivery, she told us that if Dominik was in complete kidney failure that he would not survive as there was nothing they could do for a baby so small-dialysis was not an option. I was crushed to hear that there was no medical interventions available to help sustain my babies life. On June 10th, 2005 at 8:00 a.m. I was taken to the OR for a c-section. At 8:50 a.m. our prayers were answered once again, the Lord blessed us with a beautiful baby boy-he entered the world crying and PEEING. To Be Continued.

Numbers and E-mail addresses

kidney4dom — Thu, 18 Oct 2007 04:12:27 +0000

Cathy Garvey–U of M transplant coordinator-1-800-328-5465 ext 581 or 612-625-5115 ask the operator for Cathy Garvey. Cathy’s E-mail address is cathygarvey1@fairview.org. Address is Transplant Center 516 Delaware St. SE MMC 482, room 2-200 Minneapolis, MN 55455.

Kelly Lawson–612-379-3140. Email–kadondom@yahoo.com Address in RMH 621 Oak St. #421 Mpls, MN. 55414.

Mom’s Donor Experience

kidney4dom — Thu, 18 Oct 2007 03:53:54 +0000

My decision to be Dominik’s donor was made without any reservations. When we first learned of his need for a kidney transplant I was the first tested and we were a perfect match. The day before the transplant I had to go to the transplant center for a day of pre-operative tests: another chest x-ray, a EKG, labs, I met with the transplant surgeons who would be taking my kidney out. On that day it was decided they would take my kidney laparoscopically. It was determined that I was healthy and ready for surgery. The night before I could not have anything to eat or drink after 7 p.m. and I also had to drink phospho soda as a bowel prep. The next morning I was to report to the surgical unit at the hospital at 5:00 a.m. I was scheduled to enter surgery at 8:00 a.m. I met the entire surgical team, my I.V. was started and I was the first in surgery. What they do is start the donor’s surgery approx 1 hr prior to the recipients. At 9:00 Dominik was taken to surgery and his incision was made, my surgeons then removed my kidney and placed it in to Dominik. When I woke up in recovery it was 1:15 p.m. I was shocked at how long it had taken, I was told this is because they did not remove my kidney until Dominik was ready for it. When I woke I was very cold and my face felt very puffy. I later learned that I was placed in trendelenberg position ( I was on my back but my head was lower then the rest of my body) causing alot of the fluid I received in surgery to accumulate in my face. I gained 10 lbs of fluid after surgery. I was in the recovery for 2 hours and then was taken to the 6 th floor to my room. Yes I had pain and quit a bit of nausea, but I was given medications to help with this. I slept most of the night and woke up feeling like a new person. I got up and went to see Dominik on another floor after that I showerd and got ready for the day. Don’t get me wrong I definitely did not feel 100% but as long as I took my pain med’s I was able to get around with little discomfort. Each day I felt a little better. The Friday after surgery I was discharged from the hospital. My surgical incisions were smaller than I thought they would be. I had a 7 inch incision under my belly button, this site was were they took my kidney out of. Up higher on my stomach there were 4-half inch stab incisions, this is where the surgeons place their scopes and instrument in order to get to the kidney. I have to admit that for the first week I had alot of abdominal bloating and distention. I was reassured that this is normal. As for my labs, everything was normal as were my vital signs. They do require that you have a catheter in your bladder for the first 24 hours to monitor your urine output. After 2 weeks I was feeling 100% normal, I had no pain or issues at all. My surgical incisions healed without any problems, the 4 small incisions are barely visible anymore. The surgeons did limit my activity for the first few weeks especially lifting. They are always concerned about hernia’s. There really are no high risk issues related to donation, there is always the general risks that go along with any surgery–bleeding, infection, leg clots, pneumonia , etc. Today I do not feel any different than I did before the surgery. If I was able I would do it again- in an instant.

Our Story

kidney4dom — Thu, 18 Oct 2007 02:53:19 +0000

March 7th, 2007, the day we traveled 200 miles from our home in Northern Minnesota to Minneapolis for what we thought was going to be the start of a new life for our family. You see we had waited for 10 months for our youngest son, Dominik, to reach 20 lbs so he could have a life saving kidney transplant. Since birth we knew he was in need of a new kidney as his were very small and had very little function-Diagnosis=congenital dysplastic kidneys and ureteral constrictures. The plan in March of 2007 was to remove his small diseased kidneys place a dialysis catheter in his chest and start hemodialysis for 6 weeks. Transplant date was set for April 26th. I was to be Dominik’s perfect donor as I was worked up 1 yr prior to the transplant. April 26th, 2007–The day we had been waiting 20 months for had finally arrived. So many emotions flooded us, all of our thoughts were positive and we could not have been more optimistic. The first 3 days after transplant were very stressful as Dominik did not act the way we thought he would, but on the 4 th day he was returning back to his normal happy self. The Surgery took place on a Tuesday the following Friday I was discharged from the hospital, my surgery went well and I had little pain. ( I will write a post about me and my experience separately) Dominik was discharged from the hospital 8 days after the surgery, all of his labs looked great and hallelujah he was peeing. Two days later Dominik spiked a fever and he was readmitted to the hospital with an infection in his dialysis line. It was left in so we would not have to p0ke him for labs 4 times a week. The catheter was removed and after 3 more days of antibiotics he was once again a free man. We got the ok. to leave the big city and head home for our new life as a post transplant patient. We were able to spend mothers day week end at home. Then Monday evening Dominik spiked another fever and he was air lifted back to the U of M. This entire week he was monitored and then on Friday a kidney biopsy was done, this is the only way to diagnose rejection, this biopsy was inconclusive so we went through the weekend hoping and praying that his kidney was going to recover. Monday a second kidney biopsy was done and our worst fear were confirmed, Dominik was in a super acute state of organ rejection and there was nothing that could be done to reverse this. Everything we had just been through was all for nothing. That fast- we were back to square one- dialysis resumed and my kidney was removed from his little body. I was devastated as I felt that I had failed him, I am his mom I am suppose to fix everything and make it better. Once the shock was over we were on another mission, to find our precious little boy another kidney. The Dr.s said he could have another transplant as early as 6 weeks. The word was out and all of our eligible extended family were worked up. Out of all of our families we were told we had one match, auntie Karla-my sister. We were all relieved and sure we were going to get things right this time. Karla had here complete physical at the beginning of July and our transplant date was set for Aug. 30th. Then 3 weeks before transplant we received more bad news, Dominik was building up more antibodies and he now had antibodies against Karla. The transplant was cancelled. So that brings us to where we are now- without a compatible kidney donor. Dominik has a large amount of antibodies in his blood, his levels are at 93%, this mean he is only compatible with 7% of the population in the country. Finding a donor almost feels impossible at this time in our journey. Dominik is on the National waiting list. Individuals on the list with an antibodies of 93% are waiting 9 years for a kidney to become available. Many of these people do not live long enough to receive a life saving organ, I can not let my son become one of these people. We are going to search the globe for a compatible donor. Please join us in our search as this 2 year old boy deserves to be home with his loving family-Happy and Healthy once and for all.

Facts About Living Donation

kidney4dom — Thu, 18 Oct 2007 01:34:55 +0000

The first successful living donor transplant was performed between 23-yr old identical twins in 1954. Since that time, thousands of patients have received successful transplants from living donors. Transplants performed from living donors have several advantages compared to transplants performed from non-living donors. A kidney from a living donor usually functions immediately, making it easier to monitor. Some non-living kidneys do not function immediately and as a result, the patient may require dialysis until the kidney starts to function. With a living donation the transplant surgery can be scheduled at a mutually agreed time rather than performed as an emergency operation. Because the operation can be scheduled in advance, the recipient may begin immunosuppressant drugs 2 days before the operation. This decreases the risk of organ rejection. There is also a better tissue match between the living donor and the recipient. This higher rate of compatibility also decreases the risk of organ rejection. Perhaps the most important aspect of living donation is the psychological benefit. The recipient can experience positive feelings knowing that the gift came from someone who really cared. The donor experiences the satisfaction of knowing that he/she-contributed to the improved health of the recipient.

The Work-up Process

kidney4dom — Thu, 18 Oct 2007 01:01:12 +0000

Once you have thought it over and want to see what the donor work up entails you need to call Cathy Garvey, she is the donor coordinator at the U of M transplant center. Cathy will go over the questions listed in the criteria category on this log. If you fall into the category she will then send you a test kit. You need to take this to your local lab, they will draw 4 tubes of blood that will be sent back to the U of M lab. Dominik’s insurance information will accompany the kit as all expenses are covered by his medical carrier. Once the University receives your blood they will cross match it with Dominik’s plasma, this test is done to see if the potential recipient will react to the donor’s organ. If the crossmatch is “positive”, then the donor and patient are incompatible. If the cross-match is “negative”, then the transplant work up may proceed. If the donor still want to continue she/he will be asked to go to the transplant center for a day long series of test. Tests include a thorough physical, labs with a urine analysis, a chest x-ray , a ekg, a cat scan of your kidneys, and a evaluation with a social worker for a psychological evaluation. If every thing checks out the transplant team will meet to set a surgery date. Surgery is usually 2-4 weeks after the decision to do the transplant is made. The decision to become a living donor is a voluntary one, and the donor may change his or her mind at any time during the process. The donor’s decision and reasons are kept confidential.

Criteria

kidney4dom — Wed, 17 Oct 2007 21:04:45 +0000

Not every one can be a living organ donor. In order to qualify as a living donor these issues are addressed.

1.Age–Ideal ages are between 18-60 years old and in general good health.

2.Past medical history- Free from high blood pressure, diabetes, cancer, kidney disease, and heart disease.

3.Weight–The U of M’s recommendation is that a person has a body mass index of less than 30%.

4.Blood types–Must have blood type A or O.

If you meet these criteria please call Cathy Garey at 1-800-328-5465 ext. 581. or e-mail her at cathygarvey1@fairview.org.

Organ Donation

kidney4dom — Wed, 17 Oct 2007 20:15:36 +0000

Organ donation is all about LIFE. When you donate your organs you give someone the most precious gift–a chance to live. Transplants provide hope for thousands of people with organ failure. The lack of donated organs available for transplantation results in thousands of deaths each year. The truth is, despite continuing advances in medicine and technology, the demand for organs is vastly greater than the number of organs donors. This is where you can help, being a living donor is an option. There are 73,604 people waiting for a kidney as of this date. My little boy is one of them. Right now Dominik is looking at a wait of approx. 9 years if he does not find a living donor match. So we are seeking help form the general public at this time as many of our family and friends have been ruled out as potential donor matches. The decision to donate is serious and personal, a donor may change their mind to donate at any time or they may remain anonymous if this is their wish. My goal with this blog is to help people understand the transplant process as deciding to be an organ donor can be difficult as there are many uncertainty’s. Please feel free to leave a comment or e-mail me if you have any questions.