considering donation

[tulip5966]

I am a 40 year old female who is considering donating to my dad who has been on dialysis for almost 15 years. I have been through preliminary testing and have been told I am a match. Because I am a private, modest person, I have a few questions for the anonymous online world of people (especially women) who have been donors and/or for anyone with medical training who can answer my questions: For laparascopic donation, will most/all surgeons require that I quit taking oral contraceptives? If so, how far in advance? Will I be required to stop taking my antidepressant? Will most/all surgeons require catheterization? If so, can this happen while I'm already under anesthesia? And how long must the catheter remain in? Can any "bowel prep"  be done on my own at home prior to the procedure? I feel silly asking these questions because they seem like such minor concerns compared to the suffering my father has endured over the past 15 years. I appreciate any advice anyone can give me; I cannot discuss these concerns with my family and don't want to get my dad's hopes up until I am 100% sure that I am willing to donate. Thank you.

[dodger]

Hi Tulip so glad you found us here.  Wow, that is a long time for your dad to be on dialysis, he must be getting excellent care.

Not sure about the contraceptives or antidepressants.  Yes to the catherter, but it is inserted after you are asleep, stays in about a day to help moniter your urine production.   It is not painful for removal.  Bowel prep is up to the surgeon some have you do it, some don't.  But it is done at home the night before. 

All of these questions can be answered by the transplant co-ordinator and you shouldn't hesitate to ask questions.  Make a list so you have them ready.  If there are some they can't answer, they will get back to you.  I had the best co-ordinator.  If the one you are assigned is less than stellar then ask to be given a different one, some are better than others, and you really need to feel comfortable with the one you have.   Also a donor advocate is also important.  Any time you have doubts, they are the one to speak with.

I will make a suggestion that you try to be in the best physical health you can be at the time of donation.  A good healthy diet, very low sodium, lean meats, lots of leafy green and bright colored veggies, and fruit.  Try to make them as fresh as possible.  And low fat dairy.  It will help with your healing and recovery immensly.  I wish I had this info before my donation, my recovery was a bit slow because of it.  I had some other surgery 6 months later, it wasn't abdominal but still involved, and what a difference after changing my diet and exercising regularly.  I can't speak strongly enough about being prepared.

There is some instances of depression after this surgery as it can affect hormones in your system.  There have been a couple of people that had to start on antidepressants after the surgery that never had issues previous.  As long as you are aware of this on your long term health, I wish you the best.

You will have a wonderful support team here and everyone is helpful so welcome again and best wishes on your donation journey.  Janice   

[gbug12001]

Tulip I agree with dodger.  I'm 3.5 weeks after donation. Im a 43 yr old woman. I am pretty healthy so my recovery has been pretty uneventful.  After the surgery my cather was pulled out the morning after.  Drink, drink, drink your water after they do this they will want you to get up and try to go.. it took me 6 hours and when I did it was a very little amount but then everything got moving. 

I did my clean out the night before in my hotel.. we were 4.5 hours away from home so that kinda was not much fun but oh well...

Use this website... go back and look a old posts and don't be afraid to ask on the boards everyone here has been vey helpful to me.  You can also e-mail me if you are to bashfull to ask.

jacqui

[sherri]

Tulip,

Welcome to the forum. You can and should ask all of your questions to your transplant nurse coordinator no matter how small or insignificant you think they might be. They are very significant and important because you will potentially be having surgery. Donors often compare their level of importance on some made up scale because we constantly compare ourselves to the recipient who is "really" sick or the "real patient". The health care team tends to minimize donor surgery also because the patient is healthy and they are used to caring for sick people.

In terms of oral contraceptives most surgeons ask that you discontinue 6 weeks prior to surgery since your risk of blood clots is increased. You can resume usually about 2 weeks after the surgery. I did want to have an IUD inserted and even had an appointment with my gyn and just happened to mention it to the surgeon and he said he did not want me to have it inserted prior to the surgery because he felt it was also an increased risk. He was not the most empathetic of surgeons and my nurse coordinator was a little clueless as well so this certainly added stress to an already stressful situation. I am also a modest and private person when it comes to these matters so it put me in a very awkward situation and I didn't really know how to advocate for myself. This was a big issue for me as this left me without a reliable method of birth control for quite some time. In hindsight I should have had my gyn speak with the surgeon directly instead of me being in the middle relaying messages. So this is something you may want to discuss with your Gyn and the surgeon and have them talk about options that are safe and realistic for you and your husband/partner.

You will be evaluated by a psychologist so you should be very open and honest about your history of depression and why you are currently on the antidepressants. Some donors do suffer an emotional setback after surgery. Just like each donor should be in top physical condition before undertaking elective surgery of this kind they also need to be in top psychological and emotional health as well. After speaking with your own psychiatrist or psychologist and the one from the transplant center you may realize that you might not be in optimum emotional health for this. Just something to consider. Some of your antidepressants may not be able to be stopped nor should they be or they may have to be tapered. Find out if it is still safe for you to keep taking them after nephrectomy as these are long term meds for you.

The catheter will be inserted after you are under and hopefully removed the day after surgery. You will be expected to be out of bed the day after and walk around. There may be pain and they will give you pain medications. Answer honestly when asked to evaluate your pain on a scale of 0 -10. I think I was also in that mode of well its not supposed to hurt this much or I'm not the real patient so I underestimated my pain level. I remember being in extreme pain and the nurse asking me to rate my pain and I said well maybe a 5 and she said well if you say 6 I can give you more pain meds. She obviously took one look at me and saw I was in pain but I was not even able to help myself. I said, lady tell me the right answer and I'll say it.  I suggest you have someone with you in the hospital to help you after surgery who can really advocate for you and make sure you are getting what you need, just like if you would be having any other abdominal surgery. You may be kind of loopy and it is always good to have someone there to help advocate for you and make sure you are getting the right medications at the right time and get any information from the health care team. Be prepared to take off about 4 - 6 weeks from work depending on the type of work you do. No heavy lifting (over 10 lbs) for at least 8 weeks. I think of this surgery similar to a hysterectomy.

In terms of bowel prep depends on the surgeon. At Hopkins no bowel prep required just clear liquids for 24 hours and then nothing to eat or drink (NPO) 12 hours prior to surgery. The recipient generally is just NPO 12 hours prior and does not need a clear liquid diet or bowel prep since the kidney is being slipped under the skin and not too much manipulation is going on inside.

I echo Janice's recommendation about education and preparation. Keep asking questions, see if you like the team you are working with. Do you feel they will take good care of you. There is a great list of questions on this forum somewhere in the information section so review and ask away.

Good luck with your journey and wherever it takes you.

Sherri

[WilliamLFreeman]

Tulip,

I am a guy, but I will still reply in a situation where (male) angels fear to tread.   

I strongly endorse Sherri's 4th paragraph.  You need a Gofer [= Go For It].  I did (even though a physician) -- and I thank Carolyn Robbins, my wife, for being my Gofer.  And, to "pay forward" in a small way, I have been a Gofer to 3 donors whom I did not know before we met on LDO & communicated by e-mail before they donated in Seattle.  Need: a second pillow?  Answer:  Gofer.  Need: pain relief?  Answer:  Gofer.  Gofers get much quicker responses than a buzzer.  Trust me.   

Welcome to the "being REALLY serious about donating" club.  I wish you & your Dad all the best!  Please keep us informed, no matter what happens and your final decision.  Only a very few people are as serious as you.

Bill

[CK]

For my surgery, there was no bowel prep at all, just no food after midnight the night before.  Yes, to the catheter, but as others said, it goes in when you are under and feels weird but not painful coming out.

I had an IUD put in about 4 months before surgery and no one had any concern about that. I take a low dose of an old antidepressant (amitriptyline) for sleep and headaches and they did not make me stop that. Don't know about oral contraceptives, that might depend on your age and other factors.

It's hard to know how your surgery will go. I was prepared for it to be far worse than it was. I was up walking day of surgery and discharged the next day. I had minimal pain, mostly just discomfort and fatigue for the first week and I could have gone back to work after 2 weeks. I got regular fairly quickly (after an inadvertent clean-out with Senna and Colace) and had no complications other than some seasickness after removing the Scopolamine patch and some leg numbness that persists.

Like everyone said, ask your transplant team. In my case, they put me in touch with someone who had just donated through the same center and that was helpful too (though her recovery turned out to be way, way harder than mine).

[Kidney Bean]

Tulip,
I am not sure about the antidepressants, but they will most likely have you quit birth control pills at least a few weeks out from surgery. This has been annoying for me, as my surgery date keeps getting pushed back. Do you know what hospital you'd likely be in for surgery? They might have a lot of useful information on their website about their specific requirements. Mine did. Good luck to you and your dad!

-Annie

[lawphi]

You most likely will have to stop oral contraceptives to reduce your risk of blood clots. 

I hated the idea of a catheter. I barely noticed it in and would do another in a heart beat.

That being said, the unknown was the worst part.

[CARas]

I have been contemplating donating a kidney for some time. So far I have not done anything besides seek out information. I need to get my BMI down before I can do anything specific. I am working on this and have lost quite a bit of weight. In general my health is good. I don't drink and have never smoked. I am working out and eating better.

I just found out my aunt has to start on dialysis.  She has diabetes. I am very close to her as she is also my godmother. So now I am more interested in donating. Is there a certain amount of time she has to be on dialysis before she could be considered for a transplant? If I came forward and told her I am willing to donate ( at least try to see if I am a match.) What would be the next step for me?

What are the chances for a match? She is my dad's sister. I know sometimes family members can donate is it possible for me or would it have to be another family like one of her kids or her sister? I doubt if my dad would as he has had a lot of health issues but nothing with kidneys.

Would she even be considered for a donation as she is 72.

Thank you for any help or advice

Cathy

[Fr Pat]

Dear "CARas",                                                                                                                                                                           Hi. Not everyone on dialysis is a candidate for transplantation, so it would be good for you to speak with your aunt to ask more details, and perhaps mention that IF she needs a transplant you MIGHT be able/willing to donate. if she is a candidate for transplant you should contact the "transplant coordinator" at her hospital who will guide you with information, and perhaps testing. "Matching" is actually not that rare. You need not even be identical blood types, as long as your bloods are "compatible". Even if you do not match for her, if you are in good health to donate you can take part in a "swap" with another family in that same situation.
    best wishes,
       Fr. Pat

[felixdacat]

I have another related question here.   What  if you get your cycle around the time of the surgery.?  How did you handle that.  I am on an antidepressent but I weaning off, as I found out through this testing that it might be messing with my blood sugars .   Decided to go clean and then after the surgery decide what to do.

[sherri]

I did have my period at the time of surgery. I had to come off the oral contraceptives which is typical before any surgery like nephrectomy due to the increase in blood clots. Because of that I obviously got my period and murphy's law it was the day before surgery. There is no issue just that it was important for me to have a private room as I thought it would be unfair for another person to have to share a bathroom with me. You have to leave your urine for measuring etc. ... Also do not use tampons as you are already at risk for infection so I would use pads instead. Have a chucks pad on the gurney before surgery. I just helped myself to one when I was getting ready and I informed the nurse so they wouldn't be surprised. It was annoying but I found most things related to surgery annoying. You can speak with your gyn if you have any concerns.