Steve’s Donation Journal
I am writing this journal of my experience for the benefit of any potential donors and for the Hospital staff. I hope this patients eye view of a Kidney transplant will help others make the correct decision for themselves. Anyone who wishes more information please feel free to contact me.
Steve Crawford- Kidney Donor. 57 years old, 25 lb. overweight but healthy and in good shape. The pre transplant physical tests also turned up a small umbilical hernia and a small tumor on the right adrenal gland that will be removed during surgery. To prepare for the surgery I did a lot of walking, one hour per day three to five times per week for three months prior to the surgery and lost a few pounds using a moderation and common sense approach to my diet.
Jac Crawford- Kidney recipient. 62 years old and has been on Peritoneal dialysis for four years. Fair physical condition.
We are full siblings and had a 3 of 6-point blood match. My right Kidney will be transplanted to his left side via the Open Donor method done under the ribs so that no ribs are removed.
Anna and Jane Crawford- our wonderful wives. They did a great job of supporting our decision to do this transplant and caring for us after surgery.
The hospital- OHSU in Portland Oregon.
Monday 22 July– Jac and I left for OHSU for our day of final checks. We showed up at the lab for blood and urine collection at 8 AM. We immediately met the other couple that was due for Nephrectomy on Tuesday. They do two every Tuesday, we are to be the second. We also met other people that had undergone transplant, both donors and recipients. Everyone was wonderful and we exchanged a lot of great information. It was like a meeting of the clan, we all had this thing in common that pulled us together. I had my last significant meal at noon on Monday, after that I stuck to Very light solids and lots of fluids. Had another examination by Dr. Delgado (Resident). Met Dr. Lemmers and we decided to leave my Hernia alone and it may never need repair.
Tuesday 23 July– As the number two group we were told to be at admitting at 830AM sharp and to be available to come earlier if the number one couple, Brother and Sister, had any problems. Jac had to adjust the timing of his last dialysis exchange so he would be ready. It was great to see Jac finish his last dialysis. We put a “For Sale” sign on his machine when he finished. We arrived at the admitting desk at 8:30 AM on Surgery Day. We were told to sit and wait and that it would probably be 11 to 1 before they would call for us. Our family showed up, My sons Shaun and Brian, Jacks Daughters, The Bentons. It’s great to have Friends and family. The tension and fear had been low but at this point emotions of all kinds came up. At 9AM the receptionist told us that I should go down to pre surgery at 10AM and that Jac should go down at Noon. So Anna and I left the group and headed for pre OP. This was scary. The pre op receptionist was great, helped us ease the tension. They took us in, put me in “the famous backless robe”, took vitals, issued wrist tag, inserted my IV port etc. Then we waited for the anesthesiologist to come down and talk to us. I had to choose the type of pain management I wanted to use. I chose the Epidural Analgesia and it was the perfect decision for me. The anesthesiologist gave me some “happy juice” which seemed to have little effect but took the edge off my apprehension. Finally they came for me, the ride on the bed to the operating room was surreal and scary but once I arrived and met some of the team members I got interested in the process and left most of the fear behind. Then they inserted epidural tube and my memory ends. I had a long pleasant dream and awoke suddenly in the recovery room, it was a little shocking. I felt no pain but had a little nausea. They fixed this with medication. Dr. Berry came by and told me things had gone well. My head was fairly clear and I was very comfortable. An hour or so later Jac arrived. Dr. Lemmers told me the operation was “challenging”, I had four renal arteries (one is normal) and a lot of scar tissue around the kidney that made it difficult to remove and more complicated to install (they used three renal arteries.)
We did not make it to our room till Tuesday evening around 9 PM, this is much later than normal. Jac and I were in one room and the other Donor /Recipient team was in the next room. Everything I had heard told me that the Donors recovery would be much more difficult. In both cases this week we were different. Both Donors were a little younger, healthier and in better physical shape than the recipients and it showed in our comfort and recovery progress. Also the fact that the Epidural kept me 100% pain free made everything much easier for me. Still it was an interesting night; they checked Jack’s vitals every 15 minutes and mine every hour. The wards were very noisy and busy most of the night so sleep came in very short naps. But it was much more comfortable than I had anticipated. I started to get itchy, a common side effect of the epidural, and the nurse gave me in injection that solved the problem. I can’t say enough about the staff, they were great, and all were professional, knowledgeable and friendly.
Wednesday the 24th– No food or need for any. I was sprouting a Folly catheter to drain urine, an intravenous line on the back of my hand for fluids and medications and my epidural line to my spine. Now it was time to get up and walk. I had no difficulty sitting or standing. My pain management system was perfect and my leg strength was good. My head was fuzzy and it was challenging to walk rolling the stand with the IV and pumps, bags etc. The nurse escorted me and it was a short slow trip. It was also the last time I needed to be escorted. After the first few walks I was able to get up, unplug and hang the cords and tubes and walk by my self, my first step back to independence. Wednesday afternoon we started to decrease the amount of pain medication I was receiving through the epidural tube. My pain was non-existent but my blood pressure was low and decreasing, a common response to the Epidural. I felt almost guilty that I was so pain free and clear headed. My Brother was using the PCA (patient controlled Analgesia) and had to use a lot of Narcotic to beat the pain back, this kept him more dopey and half-asleep. Reduced his desire and ability to walk. Getting up and walking is really important. It gets the bowels moving, it gets the muscles loosened up and it keeps you really involved in your own recovery. The fact that I was pain free, alert, healthy (except the wound) and in good physical shape made it much easier for me to help myself. Another positive factor was the great feedback I was receiving from my family, the staff and other patients who saw me walking (semi vigorously). Jac and I would get up and walk as many times and at any time we could. As the week went by it was not unusual to see us doing laps at 3 AM after a few hours sleep. But now Jac was still moving very slowly and the narcotics were keeping him down a lot. Sharing the room with my Brother was a great experience. We were there to exchange words of encouragement in the tough times and to share in the little victories of recuperation.
Throughout the day we continued to decrease my pain medication until we got it to the lowest setting. We went from 10 to 7 to 2 (the lowest setting). My blood pressure stabilized but was still a little low. It turned out that we overdid the reduction and I had my most uncomfortable night. Both Jac and I were uncomfortable and Wednesday night /Thursday morning was a very long one. I was not in a lot of pain but I had to stay still and in one position to stay semi comfortable.
Thursday July 25th– increased the delivery rate on the Epidural several times and settled at 7. This was much better pain control and I spent a fairly normal day. Lots of 15-minute walks around the ward.
Friday July 26th– we started to remove tubes today. I will leave the Hospital today if I can control the pain with oral medication, urinate and move the old bowels. So the IV and Epidural come out. Later the catheter comes out. The Oral pain medication seems to work OK. I had a small bowel movement (with the help of a suppository) but I was unable to urinate without the catheter (common after epidural). We decided that I would spend one more night at OHSU. I finally was able to urinate at 830PM, a veritable gusher. I did not know the human bladder would hold that much.
Saturday July 27th– leave the Hospital day. We rented a two-room suite at the Marriott Residence Inn so we could stay close to the Hospital for the first week. Jac had to make daily trips to adjust his anti rejection medication and I had to stay in the area for a postoperative checkup. I arrived at the Hotel in the afternoon very tired, cranky and in need of a nap. It is so quiet in the Hotel room. Had a good two hours of very deep sleep with strange dreams. I am wearing a set of bib coveralls, I look like farmer John but they are comfortable. I had a fair night. Used my pain med. and slept three hours at a stretch. I have no pain unless I laugh or cough. I dread the thought of a sneeze. Anna and Jane are amazed at my physical state; I can squat to the ground, bend over, walk and sit comfortably. If you could see the size of the wound on my side you would agree with them. My physical preparation (walking) has really paid off. Plus I must just be lucky that my body has tolerated this intrusion so well.
Sunday July 28th– Marriott Hotel. Slept OK, still three hours at a time. Using one pain med. + Tylenol. Pain in control but I feel lightheaded today. Today we walked three blocks the waterfront had lunch and returned home. I need to remember how much healing needs to take place. My mind tends toward thinking that I can do anything that does not cause immediate discomfort. I think I have overdone it a bit and have gone 6 hours without any pain med. I am wrestling with constipation, a known side effect of the oxycdone pain pills. I will try one oxycdone + two Tylenol PM pills at bedtime then two Tylenol every four hours tonight. Mentally I feel good, no anxiety at all. Jac was released today, arrived at the hotel at 5PM. Anna fixed a great dinner for the four of us.
Monday July 29th– Marriott Hotel. I Slept a little better last night, took one oxycdone + two Tylenol PM pills at 11 PM slept till 330 AM and took one oxycdone and two regular Tylenol tablets. Woke at 630 AM. I will use one oxycdone and two regular Tylenol tablets every four hours today and eat Very light with lots of water and juice; hopefully this will work well for the bowels. The rest of the plan is lot of rest and short walks.
Tuesday July 30th– tried to go without oxycdone last night. Took Tylenol PM at Midnight. Slept 1 AM to 530, got up for a short walk and slept a little more to 7AM. No real pain just feel like my torso is rigid and clenched. Took one oxycdone and two Tylenol at 815AM. Still fighting constipation. Used a suppository and had a small BM. Not sure weather I need more walking or more rest. Met Beth and John (she was the other donor) to talk and exchange addresses and take pictures. They are Dairy Farmers from Michigan, really nice people. Beth donated to her Brother. We went out this afternoon, to Fred Myers to shop then downtown. Found a Carmel corn shop and bought some for Anna and a large tub for the nursing staff. Drove to OHSU and delivered the gift to the nurses’ station. Anna fixed steaks for dinner. The pain pills don’t seem to affect my mind very much but- they really do. Argued with Anna about the time of my last BM, I need to listen to her.
Wednesday July 31st– slept very well last night, 11PM to 7 AM. Got up several times to urinate. Took one oxycdone at 1 AM. Heard from Dr. Lemmer’s nurse. Great news, my biopsy on the adrenal gland came back benign. 830 AM, so far the two Tylenol I took at 7 AM are effective. 4PM, still doing well on Tylenol only. 6PM Milk of Magnesia dose. 630 BM
Thursday August 1st-Slept OK last night. Tylenol PM + one oxycdone at 1 AM Post operative check at 11:15 AM. Everything seems to be OK. It is too early to check my blood chemistry so I will do that next week at home.
Friday August 2nd-OK night, one oxycdone + Tylenol. Constipation still is a problem so another dose of milk of magnesia. Travel home to San Jose today. No problem, did not need anything stronger then the Tylenol for the 1 ½ hour flight. I Drove home from the Airport had a normal dinner and a short walk.
Saturday August 3, 2002– No pain medications except Tylenol. The Constipation problem is over. Slept OK. Drove my truck to a benefit care wash and sat around with my friends for a few hours. Went to the hardware store and returned home ready to sit for a few hours. Took a few short walks. Generally feel good, good enough to start feeling restless.
Sunday August 4, 2002– Tylenol PM at 11 AM slept Midnight to 4AM then had to move to my easy chair where I slept till 8 AM. I Walked six blocks round trip to the store for milk. Am using Tylenol every 4 to 6 hours. We had a lot of company today; my Grandsons were here for the first time. Everything went well but I was up too much and had more pain in the night. I had to take one more oxycdone to let me get to sleep.
Monday August 5, 2002– I am still feeling the effects of overdoing it on Sunday. Not a big deal just a little more discomfort. I am walking 15 minutes in the morning, resting a little then doing a few errands and wandering around the house. It seems to be best if I alternate rest/ walk several times per day.
Thursday August 8, 2002– Surgery plus 16 days. Good day, continue to improve. I was a busy day. I walked 25 minutes at a moderate to slow pace. For the first time I had no pain if I jarred myself a little. Rested in the afternoon then went out a 7 PM to a Blues Music show, did not come home till 3 AM. Took no medication of any type since Tylenol early Thursday. Slept OK.
Friday August 9, 2002– I have officially overdone it, got real tired today and had to cancel some plans and take it easy.
August 20, 2002– Surgery plus four weeks. The tapes are starting to peel off the incision. Less pain and tenderness each day. I walk 40 minutes each morning, then sit an hour or two then go out for errands. Doing a good job of not lifting anything over 10 lb. When I do too much and don’t rest I feel it. The worst pain I have now is very similar to a mild low back pain episode. I am starting to sleep through the night without having to get up and move to a different bed or my easy chair. I can cough or sneeze with no pain. I took blood this week and the results for kidney function showed a creatinine level of 2.4 (normal 1 to 1.5). The higher the number the worse your kidney function. I had 1.5 before the surgery. This is scary, so I called the after hours number and talked to the Resident on duty. He says this elevation often happens but I should call Dr. Lemmers on Monday.
Monday August 19, 2002– The Doctor says we need to retest my blood. Elevated creatinine is common but my 2.4 is higher than he would expect. Also the BUN at 23 is at the high end of normal range of 6 to 24.
Friday August 23,2002– Blood tests shows 1.9 creatinine level, much better. Dr. Lemmers says I can live the rest of my life at this level but that it should continue to drop. Drink 2 litters of water per day (3 if it is really hot) and continue to not push the physical activity for the full three months. If it makes me hurt don’t do it.
August 27, 2002– Five weeks after surgery. All the tape is gone; the incision is 11 inches long. I am sleeping better; I can sleep on both sides now. I still tire easily and need to spend a few hours sitting in my recliner chair with my feet up several times per day. Use of Tylenol and or aspirin is sporadic. It is getting harder to not break the ten pound lifting limitation but every time I push the limit I feel it.
Surgery plus six weeks– The ten pound weight limit ends today. I can start lifting more but still have to be careful. So I did some actual work this week. Cleaned out my shed. It felt good to get out and do some work. I was careful and ended up a little sore but OK.
Surgery plus Two Months– walking one hour per day and doing light yard work and other normal activities. I just don’t do anything that would require full muscle power. I have a occasional back pain, I think my abdominal muscles got a little weak during the recuperation and they are easily overtaxed. Last week I was becoming weary of the recuperation and began to get slightly depressed. This was counteracted when my Brother called and was bursting with energy and joy. He said he felt better than he had felt in the last six years. The anti rejection drugs have caused him to become diabetic but he was controlling it with diet and exercise so he was happy. I needed the reminder of why I had gone through this process.
I am becoming increasingly concerned about the bulge in my incision. The foreword six inches have had a noticeable bulge since the post operative checkup by Dr. Lemmers. He said it was normal, ,”sometimes they bulge out and sometimes they bulge in.”
I wrote an E mail to my Transplant coordinator with the measurements of the “bulge”, 1 ½ inch protrusion, six inches long and about 3 inches high, located 2/3 above and 1/3 below my incision. Shiela wrote back that it sounded like an incisional hernia.
To make a long story short, I consulted a local surgeon, had an MRI and yes it was a large hernia.
Monday November 11th, 7 AM Good Samaritan Hospital in San Jose. Dr. Charters performs surgical hernia repair and finds and repairs an extensive muscle separation.
Two weeks later I am healing well, in little or no plain unless I sneeze.
How did this happen? I can’t say for sure but on the second or third day after surgery I remember sitting straight up in bed and feeling a “unzipping “sensation. I think I separated some muscle at that time. The down side to great pain control was that I was able to move in ways that should have hurt but did not.
April 7, 2003– I played my first Ice Hockey game today. SRC