I wanted to share my hospital and recovery experience with other donors. I had a lot of pre-surgery jitters and anxiety, as this was the first time I had ever been in a hospital. A lot of my anxiety came from not knowing what to expect. Hopefully, this will give other potential donors a better idea of the process and calm any fear of the unknown.
I was 50 years old when I donated to my husband on 10/30/07 at Barnes Jewish Hospital in St. Louis Missouri. My husband had been diagnosed with kidney failure August 06 from what was believed to be unrecognized high blood pressure. He originally was put on peritoneal dialysis, but that did not work out. He was then placed on hemodialysis 12/24/06. If he had been able to stay on peritoneal, we would probably have waited for his name to come up on the list. However, I could not stand to see him on the hemo, and convinced him that I should go through the testing and process to be a living donor. Once testing was completed, and I lost weight (a requirement of the Barnes program) our date was set.
In the Hospital
Surgery was scheduled for Tuesday 10/30. We checked in on Monday which was a whirlwind of tests and talking with all the surgeons, anesthesiologists, etc. We thought we were going down at 6 on Tuesday and the operation would be at 7:30. However, the nurse came in at 5 in the morning and woke me up telling me they were “calling for me from surgery’. My husband said they didn’t take him down until 7:30. A little disconcerting because I was all by myself – my brother in law and sister in law weren’t there yet because I don’t think they were expecting me to be down there so early. They kept hubby and I separated to be sure that they didn’t confuse medications or anything like that (since same name) – so understandable. Nurses and anesthesiologist were very nice and gave me a shot of Atavan (sp?) to relax me. They wheeled me into the operating room (a lot smaller than I imagined) I got on a table with a kind of gel type mat under me, and that was the last thing I remember!
Doctor said it only took 2 hours to get the kidney out of me and that it started working immediately when they put it in my hubby. Since I am a short waisted thing, the incision is pretty small – 3 inches (at most) just to the left and above my belly button – he didn’t have to go to the side and below my belly button to get to my kidney.
Bad news is that I wasn’t the best of patients on Wednesday. I had some congestion from, what felt like to me, was my asthma. They kept telling me it was normal and from the breathing tube and that it would go away. I think part of it was also from the excess fluid they put into me and the fact that the bed I had was near the register and blowing warm air on me.(I was in a semi-private room – come on guys! I’m not asking for anything from this, but I would think the least you could do is give a donor a private room!) Well, after being miserable and complaining all day, they finally got me an inhaler, covered the register with a blanket, and stopped the fluid IVs, all of which seemed to do the trick. I must admit that at one point when the doctors were there, I was so miserable I told them that all the other donors said that it was not as bad as they thought, and that I thought it was worse; and that the other donors had said they would still do it if given a choice, and that if I had known this I wouldn’t have gone through with it. It was at that point the doctor got me another Atavan shot to calm me because I was “agitated” – actually got two of the shots that day!
Thursday was a much better day and each day seemed to improve. It did take a while for my appetite to return. I had been forcing myself to eat a little at each meal they brought me, but the food did not really appeal to me. My appetite finally seemed to come back by Saturday morning. In fact, on the way home Saturday, I was ravenous, and seriously considering asking my sister-in-law to drive through McDonald’s for a double cheeseburger! Never really have felt pain – I would say more just a discomfort(Would have been a breeze if not for that stupid asthma!). And a little slow getting around. We were discharged together on Saturday morning, and my husband’s brother and sister took us home.
First Week Home
I am surprised how far I’ve come in just a week of recovery. The soreness is gone – I think my main problem early on was sore abdominal muscles from the air used for the laproscopy. My trainer from the gym called this week to check on me, and he said one of the downsides of being fit in that area is that working the abs thickens the muscles – so they probably did have to stretch me pretty good to get in there. I know some people complain about the gas, but I had no such problem. The surgeon said they normally evacuate about 98% of the air from you, and usually do not see much issue with this. He did ask about my shoulder and hip on the right side, as some people have problems with pain from laying on their side so long during the surgery. The incision is still a little sore, but not bad at all. I know one of the donors from our program that I talked to before my surgery by phone had told me the two port holes were sore on her, but they don’t bother me at all – I sometimes forget they are there.
We took our daily walks the way we were supposed to. Since my abdominals were so weak starting out from the stretching, I had a hard time holding myself upright, because the muscles were just not doing their job. We had a footed cane that I used for a while as support when I walked, as I found I was able to walk farther and more comfortably with the support. Yesterday, I did take my walk without the cane and did just fine. There were a couple of days early on where I was tempted to forego the walk, but I went ahead and did it, and found I felt much better and much more energized once I took even a short walk. Hubby and I are going to start today taking two short walks – one in the morning and one in the afternoon – to try to get just a little more each time.
We had a wonderful network of friends and family that provided dinner for us each night this week. That was VERY helpful. I could handle breakfast, and lunch was microwave reheat of leftovers, but there would have been no way I could put together a good, nutritious supper – would have been just too much time on my feet.
Also had a little trouble sleeping early on when we got home. It seemed like I would wake up every few hours and just could not get back to sleep. The transplant coordinator said this was normal, and, over time, my natural sleep rhythm would come back. I did sleep really well the last couple of nights. I think part of the problem was that I had been sleeping on my back, and I normally sleep on my side. I found that if I took a very soft pillow and used it to support and cushion my stomach, that I could be on my side and sleep comfortably.
I think the main thing that will take time is the tiredness. Again, it seems to get better each day, but, boy I have never taken so many catnaps in my life! I have to remember not to overdo it – I did yesterday morning and got a little dizzy. Once I sat down and rested, I was fine.
Second Week Home
Aches from the stretching abdominal muscles with the laprascopy are gone. The incision is still a little sore. One side of the incision had been numb, but last night started getting the feeling back – unfortunately, not a good thing as it did start bothering me a bit. I took a couple tylenol and went to bed early, which did help.
Walking each day becomes better. We have graduated from one walk a day to one in the morning and one in the afternoon. We only walk around the block, but that’s just fine. The walking does energize you and I always feel better after taking our walk.
Have been able to cook simple dinners without a problem. And have also been able to do light housework – ie scrub the toilet, clean bathroom sink, dusting. The doctor did say I could vacuum as long as I don’t lift the vacuum. Have also been able to drive short distances without much issue. The doctor had said I would be able to drive after I had been off pain meds for a few days, but I made one short trip that first week and knew I shouldn’t be driving even then – it was such an effort to concentrate on what I was doing! I still have a couple of “brain blips” now and then where I will say the wrong thing or forget something, but that is fewer and farther between.
I have been able to sleep much better this week. I have not felt the desire to nap like I did the first week home, but have made a point to rest and read or just watch tv at various times throughout the day. We actually went out for the first time on Friday to our Orchid Society meeting. No problems, but I have been going to bed about 9:00 so did start getting tired at that time and about fell asleep at the meeting! But it felt good for both of us to be out and doing something normal (plus it was our 33rd wedding anniversary!).
We both went on Wednesday for our check back appointment with our respective surgeons. My doctor was pleased with the progress and everything seemed to be healing well. Asked me a lot of questions about if I was urinating okay, pain, etc. And of course the standard question if I was having bowel movements! (In the hospital, everyone asked the same 3 questions in various order – Are you in pain? Have you had a bowel movement? Can I see your incision? I think I flipped that gown up more often than a demented stripper!). He pressed around on my abdomen to be sure I had no pain, listened to my lungs, heart, stomach. I have an order to get bloodwork and urinalysis in 3 months that will be sent to them and my primary doctor as he said this information would be used to establish a baseline function for my remaining kidney. I will then need to have my doctor do the same annually and sending a copy to the transplant center, so everyone can monitor me. He also wrote out weight restrictions so I know how to begin back with my exercise and weightlifting. The main concern is that I don’t want to get a hernia – he said it’s not a problem, but just more surgery to repair. I told him no thank you! – this one was enough to last me a lifetime! He did comment that they are ultra careful with donors, because it goes against everything in their Hippocratic Oath to operate on a healthy person.
Third and Fourth Week Home- Back to Normalcy
Sleeping much better, although a couple of nights I seem to have a tendency to wake up at 1:00. I am able to comfortably sleep on my side, but still use a soft pillow against my belly for support. Able to take longer walks without a problem. Have ditched the naps – really haven’t felt tired during the day. Have been able to do simple housework, laundry, etc. I have felt so good, I keep having to remind myself that I am not supposed to lift more than 10lbs as I sometimes forget I am still “recovering”.
Did grocery shopping for the first time last weekend, and also went out Christmas shopping with hubby for about an hour Saturday night. Did fine – not tired at all.
The steri strips have fallen off the two port holes and are almost off on the laproscopy incision near my belly button. I am amazed,after looking at the transplant photos that Karol posted, how they fit a kidney through that relatively small incision! I am also extremely pleased at what a good job the surgeon did! – there is not much more than a line there! I am guessing that in a few months, there won’t be more than a faint scar. Now if I could just get rid of that stomach “pooch”……..
Will be going back to work next week, but I did warn them I may do a few half days if I get too tired. I am actually getting bored and am ready to go back. I think I will wait until the following Sunday to go back to the gym. I want to start out slow with the “sissy” weights, and try a little walk on the treadmill. I’ll then get back with my trainer so we can start building up nice and easy according to the surgeon’s guidelines. It will be nice to get back into a routine.
The healing process has been a lot quicker than I imagined. A few weeks ago, I would never have guessed I would be this far along.