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my journey into kidney donation : sms3630@gmail.com
The first thing is tell me about your experience at Siena.
What was the most difficult part of this process?
What were peoples’ reactions to your decision? Did anyone try to talk you out of it? Did the hospital try to test your willingness?
Kidney donation from a living person is still very rare. Do you think you will work as an advocate for it in the future? Would you recommend it to others?
Why kidney donation and not, say, raising money for cancer research in honor of your grandmother?
Do you feel as good about it now as you did when you were making the decision?
Do you have photos you can send us?
Who is the recipient (if you are allowed to tell us)?
When is the NBC special going to air? Will it air in Albany or just on LI?
Melissa,
Thank you so much! This is great! I will be sending you my copy very soon. I would say tomorrow or Friday. I can’t wait to get this story published…by the way did I tell you it’s the president’s issue. It’s all about our Franciscan mission…this will be our lead story J
Melissa,
Just wanted to let you know Siena is helping to spread the word about kidney donation for you. I did a short write up on our news blog (and the story will be scrolling on the siena.edu homepage ticker by the end of the day). You are a true inspiration! Good luck on Tuesday, you will be in our prayers.
Allison Maloney '06
Asst. Director of Communications
Siena College
Melissa,
I am so happy to be able to e-mail you…finally! I have posted a few anonymous comments on your blog, because I did not want to seem like I was an eavesdropping relative of Uncle ***’s…but I read a comment from my college friends on your blog and figured it was time to introduce myself!!
My name is Amy ******* and my Mom, Karen, is Uncle ****'s sister. He sent my Mom the blog and she forwarded it to me. I was utterly blown away! I read it with tears, joy, smiles, more tears and complete awe! We had been praying for Uncle****’s healing for years and then for a young, beautiful woman to enter in as an angel (I couldn’t resist!), well, I consider it a miracle! I thank you for posting all of your experiences and innermost feelings and I truly devour every word. I swear my heart skips a beat when I see a new post! I appreciate all of the insights as to why you are doing what you are doing, all of the medical details, and all of the good news (my heart goes out to you for all you have ALREADY gone through. The commuting time, the WAITING time, the pain suffered, the anticipation of each step…etc.)! When I saw that you wanted your blog shared, I immediately forwarded it to all of my close friends, but I was still unsure about getting in touch…but then I saw my friends letter….so here is my long overdue note!
My Mom, my sister and I all suffer from PKD. For my husband, having children wasn’t an issue, but I did have to stop myself and think that I could possibly pass the disease on to them. I actually did not know I had it until I tried to be a donor match for my Mom. I was a bit devastated, but I just hope that before I need a transplant they will develop a cure or a way to stop the cysts from growing. Or perhaps there will be a Melissa waiting for me!!
My Mom and Uncle **** were raised by my widowed Grandmother, as their father died when Uncle **** was a baby. I don’t know how my Grandma did it…working full time and not driving, but family and friends helped her as much as they could. She did a wonderful job raising two giving children and putting my Mom through college and sending her to Columbia for her masters! She was such an inspiration to me and I found myself comparing her to your halmoney (one of my close friends is Korean and I recognized the name immediately), who inspired you to do the unthinkable…donate a kidney to a stranger!! I can’t even imagine the devastation in finding out that she had incurable cancer, but I can relate to the utter despair of losing a grandparent. But it is obvious that her spirit is alive and well within you!
My Mom is my best friend in the world…next to my sister! She was the most fabulous Mom and there was NOTHING she wouldn’t do for her girls. As we got older, the one thing she most looked forward to was having Grandchildren. Her kidneys were failing and she was very afraid of missing that opportunity. Well, her miracle kidney came 3 weeks before my sister had her son and about one month before I had my daughter. (A funny note: our older kids are 12 days apart and our younger kids are 9 days apart!). When I got the call in the middle of the night, I figured my sister had gone into labor early…I never imagined it would be my Mom saying they had a kidney. But what a blessing to have her recovering with a new baby. She and my daughter napped together a lot!
So I guess the reason that I rambled on for so long is to say that my family is my life and it obviously sounds like your family means just as much to you. To think that your parents reacted so lovingly and generously in order to allow their little girl to follow her heart…what an inspiration they are! I was waiting with baited breath for their reaction to the news. Some of Uncle ****’s other potential donors were turned down at the psychology evaluation because they did not tell their families….and the fact that your parents supported you and encouraged you on this brave and courageous journey…well, they a big part of why my Uncle’s life is being saved too! Your parents raised the most compassionate and loving daughter one could hope for. They must be so very proud of you…as are we all! You are all an inspiration to me and my family.
I just want you to know that you have been in my constant prayers since I have learned your name. I will continue to pray for you up to, during and after the surgery. My husband and I actually just planned to visit Uncle **** a few weeks ago and figured it would be before his surgery…and thanks to YOU, it will be AFTER his “second birthday”, as he calls it. I just pray that you will feel as little pain as possible, that everything will go so smoothly, that the doctors will treat you gently and bring the absolute BEST of their abilities with them on the day of surgery. May you return home to the loving arms of your parents and friends and feel better than you thought possible. And I pray that for the rest of your life, you will feel incredible joy…the same way you make our family feel every day.
Thank you, thank you, thank you, Melissa!! And God Bless you!! Please let us know if there is anything we can do to help…anything at all!
Wow! I apologize that this note was so lengthy, but I think suppose waited a bit too long to write it!
Humbly and gratefully,
Amy *********
Preparing for Surgery
The day before your surgery, you will come to transplant clinic for the pre- operative evaluation. You will have an updated physical, blood testing, and anesthesia appointment. You will be taught deep breathing and coughing exercises. This helps prevent pneumonia.
The evening before surgery you will take a medicine to clean out your bowels and take a shower using a special soap. You will not eat or drink after midnight.
The day of your surgery you will be admitted to the hospital. By this time you should know whether the surgery is going to be the open or laparoscopic method. (see HFFY # 5285 for a brief explanation of each) If you do not live nearby, hotel accommodations the night before surgery will be provided.
While in the First Day Surgery Center an intravenous catheter (IV) will be inserted into one of your veins. Through the IV, placed in the arm or hand, you will be given fluids for hydration.
About an hour before surgery, you will get a shot. This will relax you and dry the secretions in your lungs. It will make your mouth feel dry, and you will become sleepy. After the shot, we will ask you to stay in bed.
During surgery, a small rubber tube (Foley catheter) will be placed in your bladder. This allows us to watch your urine output. It remains in place until the day after
surgery.
The surgery will last about 3-6 hours. You will be in the recovery room for about 1-2 hours before being taken to your room on the nursing unit.
After Surgery
When you arrive in your room, you will still be quite sleepy. You will still have the IV and Foley catheter in place. Your nurse will take your blood pressure, pulse, and
temperature, and measure your urine output often.
You will be asked to cough and deep breathe at least hourly while you are awake. Anesthesia can increase your lung secretions. These can stay in your lungs and may
lead to pneumonia. By deep breathing, air reaches the area where the secretions collect and coughing helps to bring them up. A small plastic tool (incentive spirometer) will be used to help you take deep breaths.
Most often you get up and walk about six hours after you return to your room. Walking will help prevent many problems that can occur after surgery. These include pneumonia, blood clots and bowel problems. You should walk at least every 1-2 hours during the first few weeks.You may be given elastic socks (TED stockings) to help the blood flow to and from your legs to help prevent blood clots.
Your urine output will be measured hourly for the first day. When the Foley is removed, we will measure your output every time you void. This helps us know that your remaining kidney is working well.
Your doctor will decide when you can resume eating. Surgery and pain medications can slow the wave-like action of your bowels for a short time. As bowel activity and sounds return and you start to pass gas, you will be given liquids. Slowly you will advance to eating regular food. Walking as early as you are able will help your bowel function return to normal.
Laparoscopic incisions are smaller. There are four small (one-inch or less) incisions at various places on the abdomen and one larger (3-4) inch incision below the belly button. Sutures are also used to close these incisions.
You should look at your incision/s daily watching for signs of infection such as redness, swelling and/or drainage.
Your doctor will order pain medicine for you. Until you are able to drink, you will receive it through the IV. The pain medicine should be taken to help decrease incision pain. It will be easier to walk and take deep breaths if your pain is under control. Once you are able to eat, you will take a pain pill instead of a shot.
Getting Ready for Discharge
You will go home 3-4 days after surgery. The length of stay may be shorter with laparoscopic surgery. Your nurse and doctor will give you additional instructions before discharge. You ill also have pain medicine ordered to take home with you.Activity and driving will need to be restricted. Walking is a good exercise anytime. Do not lift more than 5-10 pounds for the first 4-6 weeks after the open surgery and for 3-4 weeks after laparoscopic surgery. Exercise with moderation, and lifting heavier objects after 4-6 weeks is probably ok. Slowly increase to any more trenuous activities. You cannot drive if you are still taking pain pills. In most cases, you may return to work after 4-6 weeks. Some people may go back to work as early as two weeks. This will depend on what kind of work you do. Please discuss returning to work with your doctor.
"Melissa:
Long story made short, we are college friends with *****’s niece and she forwarded your blog. My wife has fond memories of dancing with him at his niece's wedding. We think it is great what you are doing so unselfishly and wish both of you the best throughout the whole process. We will certainly keep everyone involved in our prayers throughout the next few weeks.
Cheers!"****************************************************
"Dear Melissa,
I received your blog from ***** and ****, ****'s sister andbrother-in-law.Thank you for giving the gift of life to ****. Because of you and your actions, I learned of the Rogosin Institute and how to make a donation. Your parents must be very proud of you. I will be praying for you, your intentions, ****, and everyone who guides and cares for you both.
Jean Ann from Pittsburgh"