It's been - one week (transplant story)

[KellosKidney]

Thank you all who answered my questions about my upcoming transplant - your answers and support were so appreciated!

The surgery went well. I woke up in tremendous pain which lasted the entire day and night - nothing they gave me even touched it. I started feeling anxiety because I had 3 IV's, heart monitor, oxygen, Foley and staples in my gut, so I was standing up and walking a few steps just hours after surgery. The nurses were freaking out but I said I was felt like I was crawling out of my skin.  I think it was a combo of the Reglan the anesthesiologist gave me during surgery (it always makes me feel like crawling out of my skin if I'm given too much) and being poked, prodded and tied down. They did not put a port in which is the only complaint I have because I am a really difficult stick. They finally had to start bringing STAT nurses, anesthesiologists and IV specialists in everytime they needed blood (which seemed like every hour).

After that first day & night, I started feeling better, my pain was mostly just the incision, which I can live with. The transplant unit at OSU is incredible - huge rooms, very attentive staff and most importantly - quiet! I couldn't believe I was in a hospital.

The day after the surgery, I walked downstairs and went outside to see the nearly 10,000 pinwheels they had up for Transplant month. Walking around definitely makes my incision hurt but it makes me feel better if that makes any sense. I'm still taking the pain medication, but less every day.

They said the kidney is very big (donor is a big guy) and it was a tight fit, but they got it in there. They told me that it was actually a good thing that it's bigger because they tend to work better. I was producing a liter of urine every half hour! I walked down to check on my donor - he was in bed but only had to stay 3 days total. I told him that I was doing well and that they said I was the poster child for kidney transplant - that seemed to please him. He said it wasn't as bad as he thought which made me feel a little better.

People were clambering to visit but I just did not want to see anyone so my husband explained that I was in a lot of pain and they seemed OK with that. I've been getting cards so that made me feel loved 😊 since I wasn't allowed to get plants or flowers. I was released on day 6, my GFR went from 9 before the surgery to >60!  My creatinine was 4.4 and is now. 77 - it's shocking to see those numbers! I did end up getting a blood transfusion right before I left but that was ok.

They put me on Mycophenolate and Tacrolimus, one of which I think may be causing my intense body aches and constant sweats/chills because I don't have any fever.  It's difficult to get any sleep because of those symptoms. I'm having a follow up appt this week so I'll ask about it then. My insurance already forced me to use a mail-order pharmacy and they've already screwed everything up. Luckily, I left the hospital with enough for two weeks because even though it was ordered on April 30th, it's still not here yet. I already can't stand working with Briova (the mail order pharmacy).

Now for a weird question:  when they connect the new kidney, do they poke a hole in your bladder? I have what feels like cramping in my bladder (I was still urinating before the transplant - I have PKD). I just can't grasp how everything was connected and I'm the curious type.

Thanks to all who made it this far

[cassandra]

        Congratulations honey!!! No idea about the connections, if I thought I could do it myself I might want to find out    . For now just enjoy, have an extra drink on me, and send extra well wishes to your donor.


Love, luck, strength, Cas

[Simon Dog]

Yes, they have to poke a hole in your bladder.  They also install a stent to prop it open while the attachment heals, and then go in through your urethra a copy of weeks or so later with a scope to remove the stent.

[Paul]

  Well done with your transplant. 

[kickingandscreaming]

Congratulations on your new life!  Best wishes for a speedy and uncomplicated recovery.

[SooMK]

I would find out whether or not you have a stent. I got the impression that not everyone has one put in. I didn't realize that I would have one and found it very uncomfortable. It made for a most unpleasant few weeks. I was so glad to have it removed. It sounds like you are doing fantastic. Such wonderful numbers. Between the buffet of meds you are on and the search for the ideal Myfortic and Tacrolimus recipe, I'm not surprised you're having some side effects. Hopefully they will become at least less intense if not completely go away. I hope you get straightened around with the mail order company for your meds. I use the one that the hospital used and they have been great. Somehow with the switching out of meds during my first year I have managed to have an extra month or so always available. This is great for my peace of mind. It is stressed to us how important it is to always take our medications and to learn how to manage them but if you don't have at least a few week's cushion it can be a worry. Even more so if your pharmacy doesn't do a good job. Best of luck and congrats!

[Simon Dog]

Somehow with the switching out of meds during my first year I have managed to have an extra month or so always available.

Insurance companies often track "eligible date" by the month only, not over the course of an entire year.   For example, if you have a 30 day Rx, you might be allowed to renew on day 25, and then do the same the next month, and the month thereafter.   If you're allowed to renew 5 days ahead of "totally out", you can build up a month of extras in 6 months.

[LorinnPKD]

I'm so thrilled about your new numbers!  That's fantastic news!

[iolaire]

My insurance already forced me to use a mail-order pharmacy and they've already screwed everything up. Luckily, I left the hospital with enough for two weeks because even though it was ordered on April 30th, it's still not here yet. I already can't stand working with Briova (the mail order pharmacy).
...
Now for a weird question:  when they connect the new kidney, do they poke a hole in your bladder? I have what feels like cramping in my bladder (I was still urinating before the transplant - I have PKD). I just can't grasp how everything was connected and I'm the curious type.

Congratulations and best wishes!  I'm impressed you were walking so quickly after the surgery - I started maybe on the second day.  The first day/night I was in the ICU and knocked out...

Sorry about the mail-order pharmacy.  I'm actually happy that I transitioned to Medicare about a year from transplant, its been a joy working with the local pharmacy my transplant center works with.  They provide good quality follow up for monthly refills and the like. 

All that I can suggest with the mail-order pharmacy is figure out how to insure they (and the transplant clinic) get you exactly what you need via next day delivery because you might have lots of little prescription changes for the next six months or so.  I'm past 9 months and still have various prescriptions added or removed and also dosage changes. 

My clinic uses the free website http://www.mymedschedule.com/ to track my meds and when I need to take them.  Now that I'm on my own I'm still using it as it helps me keep track of all the changes and also helps me to update the pharmacist each month when I get refills.  I also plan to bring it to appointments because the Dr's don't aways update their records based on changes phoned (and emailed   ) to me.

Re the bladder cramping - that's not something that I experienced but the whole new kidney area was sensitive for quite some time, maybe 3 months or so, and its the type of sensitivity/sore that as soon as you notice it you will fixate on it and it will become even more noticeable.  Now 9 months out I still feel a little sensitive bits around the new kidney, and then I push on it and notice it more...  I did have the stent in my bladder, you should know if you have that because they should have given you a piece of paper explaining how it must come out after a month and also tell you the warning signs of if there was a problem.

[kristina]

Congratulations and many thanks for the details of your transplant, it is very much appreciated. Since being put on the kidney-transplant-waiting list I love reading all the details about kidney-transplants. Most interesting to read that you received your transplanted kidney from a life-donor... and I wonder how it came about? You know, I have always been wondering whether - with a life-donor - the receiver might develop a special bond to that person and whether or not there could develop some guilt-feelings, if by any chance the donor might go through a rough time if their body does not adapt so well to their "giving away" or donating one of their kidneys?...

[Restorer]

Congratulations!

In certain positions, I got that kind of "cramping"/poking pain in/near my bladder - I'm pretty sure it was the stent. The stent is flexible, but still rigid enough to hold the ureter and that "hole" they poked in the bladder open. I haven't had that pain since they removed the stent (which was an adventure in itself, good luck with that). Having the stent out also decreased my urgency, so I can "hold it" for longer now and I don't have to run off to the bathroom every time I stand up.

If the kidney's big and fighting for space with your bladder, that could be putting pressure on the stent and causing that kind of cramping pain. It's worth asking about.

The restlessness you had the first couple of nights could also have been caused by the huge doses of steroids you were likely on at the time. I had the equivalent of hundreds of milligrams of prednisone for the first 2 or 3 days, on top of thymoglobulin (which had its own pretreatment with Solu-Medrol and Benadryl, both which make me restless!).