Question for moms of young children

[MissFrizz]

I have a 1 & 4 yo.  While I have a great support system, I'm wondering what to expect during the recovery period with such young children.  Do I really want to be down and out and unable to lift or chase them for several weeks.  I had a c-section w/my 2nd child and found it difficult and depressing to not be active.  I'm certain that was nothing compared to kidney donation. 

Can anyone share their experience? 

[kali]

My children were older (9 and 12) but I also had a c section for comparison.  (In fact, the kidney scar is parallel to my c section scar.) I guess the main difference is that with the c, you have a cute little baby to cuddle in bed.  With the kidney donation, you'll have to be careful about lifting for a few weeks-like w/the c section.  It seemed to be more difficult to stay down after the kidney operation because of all the duties I had and the fact that I felt better very quickly.  Nap times will be important for a while.

Do you have any other relatives around that could come over and help out?  I got on my neighborhood and church meal list and that helped tremendously. 

[MissFrizz]

I do.  I have family and inlaws who will happily care for the kids, and friends who will make meals for me.  The church ladies and my women's club will probably help in some way.  Thanks for your honest comparison of C-section vs donation. Was one more painful than the other?  I felt the C was more painful than I expected.

[sherri]

I have had 4 vaginal deliveries no c sections but from my patient care experience I would say the kidney donation is similar to a hysterectomy or other abdominal surgery where an organ is removed. C section there is only local anesthetic so you are awake, donation is obviously general anesthesia. That makes a big difference in recovery. Read some of the post op entries where we all talk about the GI issues post anasthesia. Scar may be similar in size and location. there is no laparascopic portion in c section and it is a very quick procedure.Lap surgery uses the carbon dioxide to inflate the abdominal area to see so that is also a big difference in recovery. you can get an idea from everyone's description of gas pains post lap surgery and the discomfort surrounding that. the good thing is the first week is the hardest and then each day improves. Stool softeners and getting off the narcotics help return bowels to normal, fluids and walking really helps. C section I believe is no heavy lifting 3 -4 weeks and for donation or other abdominal surgery usually 6-8 weeks recommended. With abdominal surgery there is the risk of hernia. Lots of muscle layers that need to heal so it is important that you do not lift your one year old who is greater than 10 lbs.

People with young children have done it, often for a spouse, but they did have a lot of physical help for recuperation. Other young mothers felt that this wasn't the optimal time to be a living donor and take the risks of elective surgery. Then other members of the family decided to test so that the young mother would not be the candidate to donate. The social workers and psychologist can help answer any questions you have and help figure out everything you will need in place before surgery. Good thing is that this is elective so you can choose a time that is most convenient to maximize help. University of Maryland Transplant Center has a very cute booklet for children describing why mommy is going to the hospital to give a kidney to Aunt so and so. You can go online and find it or email me I probably have one lying around. Just in case your 4 year old is able to understand where mommy is going and why he/she needs to be extra helpful when you come home.

Good luck and keep us posted.

sherri

[MissFrizz]

Thank you for this detailed comparison.  It's extremely helpful.  This is where I am torn.  No one else in the family has been a match and while my Dad is near the top of the donor list, he has been inactive several times due to health complications this year.  I've been standing by and waiting for another kidney to step up.  And so yesterday I made the call to start the process.  Common sense tells me it's a bad time to even consider it, with a 1 yo, but I'm feeling that now-or-never tug.  I just can't stand by and watch anymore.  I keep pushing aside the knowledge that the recovery will be difficult, painful, and a burdon on others.  The recovery stories posted here are helping me get a dose of reality.  But, I don't know how, after discovering that I'm a match, I could come to the conclusion that saving a life just doesn't jive with my personal timeline.

I will definitely get that book for my daughter when/if the time comes.  Thank you for the suggestion.

[sherri]

What you described is the big dilemma for related donors (I donated to my brother). There is that overwhelming sense of responsibility, obligation, guilt and of course love for that family member which often is in conflict with your nuclear family obligations and your desire to put yourself at risk. That is why informed consent with no coercion is a difficult standard to meet for related donors. I empathize with you. sounds like you have given this much thought. I also found it extremely helpful to speak with a social worker during the testing phase (and many many months afterwards) in order to have a safe place to vent, sort out my feelings, help me with my family relationships etc. If you have time with the 1 year old and 4 year, it is worth it (or try to make it priority). Having a supportive spouse or partner will definitely ease the burden. My decision to donate was a very difficult one. It was not one of the "no brainers' that people talk about. I have a husband and 4 children to consider and it was tough to balance. But like you said, I was the match and I was the perfect match so it was hard to not donate. Thank god, my brother and I are doing well almost 4 years post surgery. He is a young father with 2 children so that really motivated for me to go with my heart rather than my head.

In the meantime you have taken the steps, take it slowly. Your Dad may or may not be able to receive the transplant depending upon his health so there will be lots of ups and downs along the way. Dialysis is difficult but may be an option until a donor is found.Your kidney may not save his life but will certainly improve the quality of his life. Try not to be too hard on yourself or put too much pressure. (I know its hard).

Another piece of information you mentioned was that no one else was a match. If there is a willing donor who is in a better position to donate that  donor may be able to enter into a paired exchange program. There are also programs for older recipients >65 to participate in programs where older deceased organs are used for that type of recipient, where it wouldn't be applicable for a younger donor. Again I think University of Maryland has a program like that. I live in Baltimore so I am familiar with Hopkins and U of Maryland.


take care and good luck.

Sherri

[kali]

Sherri made an excellent point about the gas effects of a laproscopic surgery.  I was quite swollen for a week (? can't remember the exact moment my pants fit).  You do leave the hospital looking pregnant.  I did not have pain in my shoulders like some folks did.  I kept moving to get that gas out.  She's also right about the hernia.  I had a small one that was repaired with stitches.  I haven't returned to Pilates full time yet, only because I'm lazy.

For both the surgeries my recovery time was pretty quick.  They gave me a stool softener before I left the hospital and I bought a bottle the day I was released.  I did not go up and down the stairs after my c at all for 2 weeks. After the kd I went up and down them a few times a day.  It's hard getting out of bed at first, so if the baby cries in the night, someone else will have to help.  My girls really stepped up and helped out. The 10 yr old has become a little chef.  Emotionally it was hard for me having them face this situation with both their parents in the hospital.  Thank goodness for grandparents and aunts.

Pain wise, I was off of pain pills after 4 days with no terrible moments.  With the c section, it's been a while so I can't remember that much lingering pain. 

[joshua_david]

I have a 5 year old and an 8 year old.  4 years ago, I donated part of my liver to my son who was 1 at the time.  I was our for about 2 months...luckily we had my husband's sister look after our daughter (who was almost 4 at the time) for a couple of days while I got out of ICU and didn't have a lot of iv's going on...I think it would have been tramatic to see me and her little brother in ICU and she saw me healthy and ok where she kind of understood how sick Joshua was.  That was hard.  After a couple of days, she came up to Toronto and spent the rest of the time with my husband and I (and Joshua when he was dischaged after a couple of weeks) at the Ronald McDonald House.  We were in Toronto for a month total (Joshua had daily labs so we had to stay in Toronto eventhough it was all as an out-patient basis)...After a month, we were able to go home. 

I could not carry anything over 20lbs for 2 months (Joshua was 20lbs)....My husband fortunately had a paid leave of absence from his work so he could care for us while I got better then John could go back to work (I quit my job after a couple of months into Joshua's chemo treatments).  It was very painful but I got through it...It was totally worth it...Joshua is 3 and a half years cancer free now!

I never had a c-section so I don't know what that is like and I don't really know the average recovery time for a kidney donation but for me it was right arounf the 8th week mark when I felt back to my normal self.  I felt "useless" at first but I was in pain and I didn't want to "overdue" myself b/c that could lead to complications and more time off for John (If he could get it)...John (my hubby) was a warrior and did everything.  Hope this info helps.

[Snoopy]

I did not go up and down the stairs after my c at all for 2 weeks. 

Kali,
   Were you unable to go up/down stairs, or was it just difficult? I ask because, to get into my building, I have to go down 35 stairs (front entrance), or up 32 stairs (back entrance). If I'll be unable to do that when I first get home from the hospital, I'd better know now.
   Be well, Snoopy

[Fr Pat]

Most donors are taking a short walk on the day of the surgery, and can handle stairs O.K. (slowly) once they go home.
     Fr. Pat

[jstx]

Snoopy, I stayed at a place that was two story when I was released from the hospital because the doctors all told me stairs would be fine.  Still I was worried....Sherri told me she didn't have problems with stairs-that it was getting in and out of bed that was more problematic.  The same was true for me.  Stairs gave me no problems at all.  I went slowly and held onto the banister so I didn't get dizzy or miss a step, but getting in and out of bed (especially at the place we had lodging) was so much more difficult.  When I got home my mom helped me rig a system so I had something to hold onto to get up and out of bed easily (my bed at home is very high up and I was worried about that).  I think you'll be just fine doing the stairs as long as you take it easy, hang on, and if they are outside make sure they aren't slippery (if wet, etc).

[kali]

The reason I mentioned stairs is that my nurse scared me after my c section.  She said I would have a hysteretomy if I overdid the stairs.  That thought stayed with me for awhile. 

Stairs after a kidney donation weren't a problem with the muscles. I just have one flight in my house and did them fine.  You should be able to do 30 stairs no problem (not carrying anything of course).  It's the weight limit restrictions that you have to watch.  You can over do those without thinking.

[smudge]

Yup, stairs weren't a problem for me.  I stayed with friends post-donation who had a 3 storey house and my room was on the middle storey.  I didn't really think about it as I know their house well.  Obviously I didn't carry anything of any weight up and down the stairs and moved a little slower but I didn't think anything of going up and down them from as soon as I got there (which was 2 days post-transplant).

[MissFrizz]

Tammy - Congratulations on Joshua's good health!

Thanks to all for your responses, they really help alot.  I hadn't thought about the impact of my 4yo seeing me in the hospital.  She saw me after the C-section, but I looked fine and the baby was a great distraction.  I suppose I will not see her for a few days.  That won't be easy but she'll enjoy sleepovers with her cousins.

I remember having trouble getting out of bed, feeling like my stomach would bust right open.  But, I also went easy on the pain meds b/c I was nursing.  I went right upstairs to bed when I came home, but did not go up and down much for a few days.  I had my meals delivered to me.  (which was quite a luxury!)

My dad was on peritineal dialysis for the last 3 years and he lived a very normal life.  Then, in February, all kinds of trouble began and by July, he was on hemodialysis.  Thank God for any kind of treatment that keeps patients alive, I mean,that's amazing.  But the side effects that come along with it have changed everything.

One minute I think:  Yes, of course, I can do that.  And the next minut I think:  How can I parent if I'm in so much pain I can't get out of bed? 

But, I'm getting ahead of myself.  We don't even know if I'm a match or if he will accept.  Still checking the mail for my "packet"   

[ohtobeahayes]

Hi!
At the time of my surgery, my children were 8, 7, 5 and 3. I had a good support system too. I have also had a hysterectomy and my gall bladder out. While resting is hard sometimes, it's nice sometimes too. Your kiddos won't remember this time that you are down. Your 4 year old might beable to retain a little bit of something going on with a kidney or something but even 6 months down the road, it will be business as usual like nothing happened.
It's not always easy.  Not cleaning was making me nuts, not using my 25 lb Kirby vacuum, not picking up my 3 year old- but I got lots of snuggles and truly, the help was very nice to have. It's for such a short time.
Best of luck! Keep us posted on the journey and if you are a match!

Nicki