transplant

[rileysmom]

hi there. i have a friend who said she was willing to be tested to see if she is a match for me. but i do have some questions regarding the transplant if it turns out she is a match. i am a single mom with a five year old and if i do get this transplant i am not sure who i can have watch my daughter for so many weeks and who will take me back and forth to the doctor in the beginging. i do have family members but they live about an hour away and they have families of their own. also my daughter has some special needs which requires her to go back and forth to her therapists a few times a week. after the transplant how long is it before you can function some what normally? how often do you have to go to the doctor after ? and what are the restrictions after a transplant ...both short term and long term..ie lifting, working out, driving, etc. any help with these questions i would really be grateful ...

[WishIKnew]

I needed a lot of help for the first almost three months.  I know that sounds terrible, but it wasn't all the time or every day.  I had an easy go of it but still had to be readmitted 2 months post transplant for 5 days for an infection.  As I spend more and more time here I seem to see that at least 1 readmit post transplant is very common while everything gets balanced and your body adjusts to the meds.

I had twice weekly blood draws for the first 3 months.  In the begging I needed someone to take me to these, but by 6 weeks out I could drive myself and they let me go to a little hospital closer to home for my blood draws.  Now I go once a week.

My transplant surgeon said, "If it hurts, don't do it!"  So that was my guide for working out and lifting and stuff.  I'm 4 months out and i do everything for myself.  I have been for awhile now.

I wish you the best!!!!!

[KarenInWA]

It really does vary from person to person. I was back to driving at the 2-week mark, and went back to work after 6 or 7 weeks. I live alone, so I had to fend for myself. I had a relative stay with me for the first week, but was on my own after that. Just did everything carefully! I made small trips to the store, did small loads of laundry, things like that. Took advantage of my sister and brother-in-law when I could (they live minutes away from me). I saw the dr twice a week for the first 2 months, then it went down to once a week, once every other week, and was going to once a month until I had my biopsy mishap. Just be careful with any biopsies!!! After that, I ended up in the hospital, had emergency surgery and a 5-day hospital stay. I was one of the rare ones who had a bad reaction to a biopsy - in my case, a large hematoma that abstructed the kidney and caused acute kidney failure. NOT fun.

KarenInWA

[SugarBear]

I am afraid your biggest obstacle will be your daughter.  Children tend to carry a lot germs which can cause you the most infections and other problems.  By nature, children explore the world with their hands and mouths thus exposing their immune system to all kinds of germs and possible diseases.  This is especially true for your daughter as she travels to therapy and other appointments where germs persist.

I have miss birthday parties and a family gathering because there were children present and my transplant team specifically order me to avoid contact with children.  This has now been going on for three months and a couple of weeks. Mostly because I have an CMV virus, which 70% of the population has, and the medications have lower my white blood count.  So I mostly stay home, only going out to appointments and I avoid touching people.  If I do touch someone, such as shake hands, I use something like purell to kill any germs.

If you do catch the CMV virus, which a lot of transplant patients do, you can expect extreme fatigue, loss of focus, loss of appetite, and nausea.  I lost about 25 lbs in a two month period.

I am not saying it can't be done with children, just that it will be more difficult.  I had a friend in a kidney support group that lost her kidney after eight months and she had four children, one adult and three preteens.  She did better when the kids were out of school during the summer, but during the school year she suffered a couple of infections and was constantly sick.  This occurred even thought they had some safety practices in place.  Upon the kids entering the home they would strip off their clothes and change to clean clothes, also they gave their cat away.

I pray the transplant works out for you, it is worth the attempt.

[jeannea]

I was not allowed to drive for 6 weeks after my transplant. I had to see the doc every week and blood tests twice a week. Also, I had an issue that the doc left my wound open so I needed help bandaging it a few times a day. The other thing is you shouldn't lift more than 10 pounds for a few months after. You won't be able to lift a 5 yr old.

Do you go to church? Often churches will arrange for people to help you if you just ask. Mine does.

And I agree with the others. An extra admission to the hospital is not unusual.

You can do this but you'll have to plan ahead.

[Deanne]

I live alone and have talked to friends about helping me. They'll take turns shuttling me to the hospital until I can drive. One of my friends has decided I'm going to stay with her for a month. Um. No. My parents said they're going to come out to help me, but I don't know that it's a realistic choice.

Is there anyone your daughter can stay with for a couple of weeks after your surgery? Do her special needs require lifting or specialized care that would require someone to have special training to handle? If she's a physically healthy 5-year-old, lifting might not be an issue.