We are set to go!

[APV]

Our transplant day is confirmed!  I will be donating a kidney to my dear husband on June 10th at UCSF.   The process was long, but went relatively smooth.  Both my coordinator and my husband's coordinator have been outstanding through the whole process. Did anyone here have their transplant/donation at UCSF ( University of California San Francisco, Medical center)?  Anything in particular we should know about this particular facility?   Questions we should ask at our pre-op appointment?  Thanks for your time.

[PhilHoover]

Congratulations!

Welcome to the club, and THANK YOU for your generosity.

As a living donor (18 months ago), I would strongly encourage you to "educate" yourself on all the little "details".

As your living donor coordinator as many questions as you will have.  He/she/they should be willing to answer all of them, or at least help you find an answer to them.

Do as much reading YOURSELF as you possibly have the time to pursue.

And let us know if you have any questions.  There is a wealth of experience in this forum.  I am but one.

Phil Hoover
Chicago

[treehugger]

I donated and my husband received at kidney at UCSF, in December 2009! My surgery was on a Thursday evening and my kidney was flown overnight to a stranger in PA. My husband's surgery was early Friday morning and his donor (another stranger) was in the next OR.

A close friend of mine also donated a kidney at UCSF last October and she had the same surgeon I did. We visited her and it was kinda fun to return to 9 Long as visitors instead of patients. I even got to see my favorite nurse again.

We both had great care there on Ward 9 Long. Wonderful nurses, assistants, doctors. Other than reading and learning all you can from this website, there's nothing in particular that you need to know for UCSF. It's a great facility, so just ask lots of questions and listen to the answers. I felt really prepared going into my donation, and it turns out I was.

The biggest thing my family wishes they had known before-hand? That there's a nice, quiet sunroom in the southeast corner of 9 Long. A great place for visitors to hang out and get some rest. For some reason they never saw it and my dad spent a lot of time in the busy lobby waiting room. My father-in-law and I ended up finding the sunroon when my husband had to go back in the hospital for 9 days a week after he got home the first time. Oh, and make sure to ask for the T-shirt they give you when you walk a mile in the halls of the ward after surgery (12 laps). My husband and I each earned one and we are proud to wear them. Oh, and please let your visitors know that there's free 2-hour weekday and all-day weekend parking on the street below the Parnassus parking garage (parking was our biggest expense).

My final piece of advice from one wife donor to another: this whole process will probably be a lot harder on your husband than on you. I was so prepared for what would happen to me, that I don't feel like I did enough research on the recipient's experience. The 4.5 month rough road post-surgery took me by surprise and was hard on both of us. But, since then, everything has been truly great, health-wise.

Good luck and please feel free to ask me specific questions.

Kara

[Fr Pat]

Dear "APV",
     I think it would be good to ask what surgical method of removing the kidney for donation they want to use, and why. (Open cut, laparoscopic, hand-assisted laparoscopic, etc.)
     Read (and bring a copy) of the topic on this forum warning against using a certain type of hemo-o-lock clamp to seal the cut blood vessels.
     Tell them you have also read that sometimes the flow of hormones from the adrenal gland near the removed kidney is restricted because of how they arrange the cut blood vessels, and ask if they have considered this. (I know that these are detailed questions, but it can be good to let them know that you are alert, as it may help them to be even more alert.)
     Get very clear instructions as to what to do and whom to contact if you think you have any surgical complications in the months after donation surgery. Likewise clear instructions on when they will have your 3 post-op check-ups over the next two years, and whether they will contact you to set up those appointments.
     Finally, you might want to read the list of "helpful hints" the National Kidney Foundation collected from past donors:
www.kidney.org/transplantation/livingdonors/infotips.cfm
           Best wishes, and please keep us informed!
                Fr. Pat

[APV]

Thank you all for your kind words and advice.  I will make sure I ask all the questions you suggested on top of some I have of my own.  I really appreciate having this forum to talk to people who share a common experience.  We have started a count down to our surgery date. 

Angelica

[Aries7]

Hi Angelica,

I did not donate at that center, but I did donate a kidney to my husband just over a year and a half ago. I just wanted to say "welcome" and to congratulate you on your upcoming donation and getting the date set. I think the others have already given you some great advice. Please feel free to post here as much as you need to with any questions or just for support. Keep us posted!

Best of luck to both you and your husband!

Linda

[Orchidlady]

Congratulations Angelica! You will find that the time passes quickly. Make sure you have a good support system of friends and family to help you both out while you recover.

[Scott337]

Angelica,

I also welcome you to the club.  All good advice from other posts!  Something else you may want to be prepared for is post-op feelings;  After my surgery for the next couple of nights, after being awakened late at night/early morning by nursing staff for vitals and such, I would be left afterwards, in the dark, to my own quiet thoughts about what I had just been through.   

I don't know if others have experienced this, but I was overcome by overwhelming emotion, some of relief, some of confusion, some of anxiety, some of disbelief, and mostly that of being ALONE.   I've been a cop for 30 years and haven't experienced anything so moving.  My wife was staying at a local hotel and I didn't want to wake her, but I think being able to talk to somebody at the time, even for 10 minutes by phone would have been helpful.  You may want to think about arranging for someone to talk to, by phone if need be, just to have someone listen to what you are feeling.   Something to think about anyway.

Also, regarding recovery;  One of my surgeons was also a donor (for his wife a few years ago).  He told me at one point, I wouldn't feel back to "normal" until about the 6 month mark.  I am at that now and he was right.   Although I've felt great since about the 16 week mark, I never really felt back to normal until now.  I was told this by my surgeon on one of my last follow-up visits.  I would have liked to have heard this prior to my surgery as I would have been able to visualize a more accurate time-line for recovery.

I hope and will pray your surgery goes well - best to you both!  Thanks for your generous and life-giving gift

Scott in Minnesota

[APV]

To Scott: 

Thank you for sharing your experience with me.  What do you mean you did not feel normal until about 6 months post surgery?  Were you in pain?  Did you have the blues for a long time?  I will be off work for two months, so I hope that is plenty of time to recover. I am an avid runner so my only concern is how soon will I be able to get back to running.  I will keep in mind your advice and will make sure I call someone if I need support.

Angelica

[Fr Pat]

Just to add three thoughts:
--- Some donors have had the good idea of bringing along a cheap battery-powered tape or CD recorder, so they could record their own thoughts, emotions, etc.  Very helpful to listen to later in case one wants to write up something. Usually we don't feel up to writing a diary or journal while we are in the hospital. Not a substiture for being able to talk to someone personally, but probably helpful.
--- Some donors have been back to running (building up gradually) within a few weeks, but most find that the fatigue won't go away entirely for a few months. One or two donors I know of have done a full Marathon within 6 months after donating, but I don't think you can count on that. I started running to help recover after donation (at age 56, and had not run for a long time before) and eventually got up to Marathon distance in a couple of years. Still do one a year at age 65.
--- BUT also keep in mind that SOME (few) donors have had serious complications, short or long term. It is major surgery, and has its risks. Full recovery is highly probable, but is NOT a sure thing. Donors have to freely accept some risk.
   best wishes,
        Fr. Pat

[Snoopy]

--- Some donors have had the good idea of bringing along a cheap battery-powered tape or CD recorder, so they could record their own thoughts, emotions, etc. 

Great idea.  How about a small MP3 player?  They're cheap, light, and don't need cassette tapes, CDs, or batteries (they can be charged off a PC, and the charge should hopefully outlast your hospitalization).  You can record your own thoughts, but also listen to hours of pre-downloaded music, audiobooks (for a free site, see:  www.librivox.org), lectures, etc.
Good luck, Snoopy

[Scott337]

What I meant by I didn't feel back to "totally normal" until around the six month mark was the normal minor fatigue I occasionally felt, the minor incision pains while they healed completely.  Actually, I didn't have any depression from the surgery.  Each day brought me closer to healing, feeling better, and looking forward to living with the decision to have done something so positive for someone else when they were in need. 

Scott

[APV]

So many good ideas/thoughts from all of you! Thank you 

[Prelude_Sarah]

I'm thinking of you tonight as you prepare for surgery tomorrow!  Best wishes to you and your recipient!
Relish this unique time in your life

Sarah

[PhilHoover]

you have come through this wonderful, life-giving experience...and I (along with many others) are praying for a quick recovery...

Know that you have done a WONDERFUL thing for another human being.

May God bless your generous and unselfish heart.