Trying not panic...

[adairpete]

To summarize a long story, on Mar 20 I switched from "on hold" to "active" on the transplant list.  I've been on hold for 21.5 months, and the average wait time according to the center's annual letter is 30-36 months, with the median time being 26 months.  30-36 months I was okay with-that's over a year away, plently of time.  It's that 26 months (that number I just found on the srtr website) that has just shot my blood pressure up!  On the one hand, I'm anxious for a new kidney and to be rid of dialysis (I do PD), but I'm completely dreading the surgery and espeically the recovery.  They're going to take both my native kidneys out and transplant the new one all at once (per my request-to avoid 2 surgeries and hemo).  I'll have to live for at least the first month close to the center about 2.5 hours from home and be off work for who knows how long.  I have a full-time job, a husband, a cat, and a dog (who is my 4-legged baby) and it feels like throwing a hand grenade on my life after settling into some sort of routine with dialysis. 
Basically, I would like to hear from others who've gone through this if there's any advice or things you wished you'd known before transplant.  Anything from the surgery/drugs to household chores like bill paying or even what to bring with you to the hospital.  I want to be prepared as I can as I can imagine how panicked I'll be when the call does come.  The transplant center is sending a packet of info, but as with most advice, the best advice comes from those who've gone through it, too, not people who haven't (even if they're doctors). 

Thanks for any help you can give to ease my mind! 

Carolyn

[jeannea]

You need pants with stretchy waistbands. They fill your abdomen with fluid during the surgery and you'll be big for a while. You need comfortable walking shoes so you can begin to walk and feel better. Of course some things you like to do for fun. They will draw lots of blood but you don't have to plan for that.

I didn't have both my kidneys removed so I don't know what to say about that.

You'll be ok. Don't panic.

[amanda100wilson]

At the end of the day, it is entirely your choice to go ahead with transplant, you don't have to if you don't feel ready.  However, if all goes well, the benefits will outweigh short-time inconvenience

[jshabanian]

I had the same surgery as you are going to have.  They removed both native kidneys and transplanted a new kidney.  My kidney came from a living donor so we were able to plan the surgery in advance.

My incision starts at my breastbone and ends at my pubic bone.  It didn't hurt much at all during the healing process.  It is just very hard to stand up afterward because it feels so tight.  They do fill you with air so your stomach will be huge.  I gained a lot of water weight after the surgery and was quite swollen. When they tell you to take the stool softeners, DO IT!  It is very easy to get constipted after a surgery like this and boy does that cause a lot of problems.  Buy yourself some sweat pants at least one size too big so you will be comfy.  You will have to go to the clinic for lab work so don't make the mistake I made an buy bright red sweats.  I felt ridiculous but they were the only pants that fit at the time.  Black is a good color. 

The medications are complicated so try to pay attention to the pharmacist when he explains what to take.  I was so sleepy when he was talking (side effect of pain meds) that I couldn't follow him much.  Luckily I am a fast learner and he gave me good printed material to read. 

I had a choice of pain medication:  either epidural or in iv line.  I chose epidural.  It worked great and I had no pain at all.  Follow the doctors advice regarding what to eat after surgery.  Your stomach will take some time to wake up and if you put food in it too soon you may get very gassy and have lots of gas pain.  I did and it was awful.  That was the only pain I had. 

I am an overweight person and had an umbilical hernia prior to my transplant surgery.  They did not put any mesh when closing up the incision and I developed many hernias along the incision line after surgery.  This required a pretty long surgery to correct and has interferred with my ability to do PD now that my transplant has failed.  I wish I had known or thought to ask the surgeon if he could put mesh in when closing up the incision.  I believe I would not have the problem with that now if the mesh were there.

Take your meds exactly as prescribed. Don't think you can play around with them or stop taking something if you don't like the side effects.  Talk to your team about side effects and they may have alternate drugs for you to use. 

I came home with drainage tubes coming from my belly. They fill up and then you drain them and measure the amount, record and and seal back up.  I wasn't expecting this and it kinda grossed me out at first. They are pretty big and you can see them when you tuck them into your panties.  Makes it awkward to go out in public.  Speaking of public:  try to avoid crowds for the first few months.  If you must be in a crowded place make sure you wear your mask.  Your immunosuppressants will be at their highest level at the beginning and that is when you are especially vulnerable to diseases.  If someone who is sick comes to visit ask them to wear a mask.  Use disinfectant on all door knobs and counter tops etc. 

I assume you have polycystic kidneys.  If you do you may want to bring a camera with you and ask if someone will take pictures of your kidneys. They look so bizarre. I was blown away by what was living inside of me.

I donated my kidneys for research.  You can do that by contacting the following:

   
Discarded Tissue Donation
Researchers have made significant breakthroughs in recent years with the help of donated PKD kidneys. The PKD Foundation coordinates the donation of discarded PKD kidneys to research labs. These kidneys are living tissue and come from PKD patients who have had their kidneys removed.
 
    
           
If your kidney(s) will be removed and you wish to donate them to PKD research, please contact the PKD Foundation at 1-800-PKD-CURE or by email with the following information at least 10 days prior to the kidney removal.
 
1. Date of surgery
2. Number of kidneys being donated
3. Hospital name and location (address, city, state, zip)
4. Name and contact information of the person donating the kidney(s)
5. Name and contact information of the transplant coordinator
6. Name of the surgeon.
7. How long the donor has been on dialysis (if applicable).
8. Date of past transplant(s) (if applicable).
 
You can check out this website pkdcure.org

If I can think of anything else I will post it here.  Good luck!!!! 

 

[adairpete]

Thanks for the responses. It kind of sunk in yesterday what I had signed up for. Being on hold for so long, transplant seemed far off but now it suddenly seems very real. I got a tad freaked. I feel better about it now. The info from the center came in the mail and I read that over.
I'm still nervous but want to get as prepared as possible. I am probably over-thinking everything and have to rein myself in from getting too anxious about all the things I can't control. I appreciate all the advice and welcome any other suggestions.

jshabanian-I don't have PKD. My kidneys are actually full of stones and prone to chronic infections, that's why they have to be removed. I want to keep at least one of my kidneys or both to make bookends. Ha! We'll see what they say to that.

[jbeany]

Okay, practical concerns...

Have you written up a job description at work?  Ideally, you will be gone just long enough to make them miss you - but don't make them frustrated at not being able to take of the things you do for them when they have to do it without you.  Leave instructions for whoever fills in.

Do you have all your estate planning done?  Get a will, a medical power of attorney, and a financial power of attorney.  You can name a primary and a secondary on both of the poa forms.  I realize your hubs will be choice number one, but what if he gets sick?  Without that, who pays the bills, let alone makes decisions for you if you can't? 
Write up a list of all your accounts, your bills, your assets, safe deposit boxes, locations of savings books, titles to property, insurance forms, and passwords for on-line access to things someone might need to access - everything anyone might need to know.  Don't assume hubs knows or remembers the stuff you do on a regular basis.

Hubs will be with you at the beginning.  Who do you have lined up for pet care when he can't be there?  Double stock their food and supplies so no one has to go shopping for them for several weeks.

Make sure someone comes to IHD to update us!

Hospital supplies.
Buy a white noise machine.  And/or ear plugs.  Trust me.
A small portable fan was a life saver as well.  Those rooms have no air flow, plus it can be used to dry wet hair.
Extra batteries.
Take an extension cord if you are taking anything that plugs in, like a cell or pad charger.  The plugs are always too far away from the bed.
Giant binder clips are great for hooking cords to bed sheets so they don't fall over the edge into "can't bend to get it" territory.  Trust me on this - you will NOT want to bend for bit if you don't have to.
Slip on shoes.  See above.
A strapless bra or one with a halter neck that unclips.  (I had a halter bikini top.) They want you to get up and walk around the halls all day.  You are hooked to multiple IV cords in your hands and arms.  You can't put on a regular bra.  Depending on your comfort level with "hanging loose" in public, this may be something to consider.
Decent hand lotion.  The stuff they pass out is lousy.
If you end up staying for longer than a week, send someone out for real t-paper and Kleenex, too.

Good luck!  It's worth the uproar, really, it is!

[justme15]

I also have a husband, cat, and full time job, so I understand your anxiety about having to alter your routine all of a sudden.  However I feel it will be worth it in the end. I'm not sure how I'm going to handle all the particulars whenever I get the call, but I am sure it will work out.  My husband and I will make it work  out, if I ever get luck enough to get a transplant!

[Poppylicious]

Giant binder clips are great for hooking cords to bed sheets so they don't fall over the edge into "can't bend to get it" territory.  Trust me on this - you will NOT want to bend for bit if you don't have to.

Just to add to this point ... buy one of those litter-picker upper things in preparation.  Although I was a donor rather than a recepient, I really wish I'd bought one because of the amount of times I had to ask people to pick something up for me (I was a tad clumsy after surgery and dropped lots of things!) as my belly just couldn't bear the thought of bending.

When Blokey was on the transplant list we put it from our minds.  He kept his mobile phone charged and on him at all times, but we weren't really (physically, and perhaps mentally) prepared for if a call had come.  Make sure work are prepared for the amount of time you might have to take off at short notice and be sure you know who's going to take care of your babies (and that you've prepared them for this!) if hubby is likely to be with you for the first few days (or more). 

Having your life thrown into turmoil for a few weeks will be worth it in the long run.

 

[adairpete]

Thanks for all the great advice everyone!  I have calmed down considerably and am back to thinking non-panicky thoughts about a transplant. I read in the material from the transplant center that I could be back to work (probably not full-time, of course) in 4-6 weeks.  That seemed a overly optimistic considering the surgery and multitude of drugs being taken.  Has anyone gone back to work after a transplant in 4-6 weeks?  I was told it could be as much as 12 weeks.  I do have a pretty sedentary job. 

[jshabanian]

I went back after about 6 weeks and I had a bi lateral nephrectomy as well.

I went back to a very lenient office job.  I could go in when I wanted to and leave when I needed to.  That is the only reason I was able to go back so soon.

[Poppylicious]

Blokey had his transplant in mid-October and went back to work at the beginning of January.  He was ready to go back at the beginning of December but he wangled it so that he didn't have to (we have a lovely GP who thought he should have as much time as he could off!)  His work were fine with it.