Home at Last!

We are home at last. What an interesting, and at times, troubling experience.

Alvin and I did not receive a phone call from the hospital Monday night, nor had Tara, to tell us what time we were supposed to show up at the hospital, where to check in, pre-registration, nothing, nada, zip. So I gave them a call just before five in the evening and found out that our 9:30 a.m. check-in time was wrong and we were supposed to be there at 5:30 a.m. for a 7:30 surgery time. What a portent of things to come.

We had dinner with Tara and almost all of her family (her parents home for two weeks from their mission, temporarily excused to care for their daughter during her surgery and recovery), along with seven of her nine brothers and sisters with their wives and children. What a fantastic evening it was. Alvin and Tara had to eat by six so they could do the cleansing of the bowels thing. Sorry, no other way to say it. Both of them were up until 2 or 3 before they finally fell into exhausted sleeps for less than an hour or two.

We were on the road by 4:30 a.m. to the Intermountain Medical Center off 53rd South in Murray (just south of Salt Lake City.) We arrive around 5:20 and proceeded to Same Day Surgery where we checked in. Alvin and Tara were told to go to the kiosk, sign in, get a beeper (just like the ones at Outback Restaurant) and sit down. Unspoken was the "and shut up and don't bug me." I have rarely seen a more impersonal, cold beginning to what was an extremely important day. Nevertheless, we laughed about it, they did their thing and we all sat down to wait. Tara's mother and sister were with her and they are an absolute delight.

Thirty minutes didn't pass before Tara was taken back and we waited. Waited for 4 1/2 more hours growing more frantic by the minute. We were told Tara had been taken into surgery at 7:00 a.m and still we were in the waiting room. 8:00 a.m. passed, as did 9:00 a.m. and then 10:00 a.m. We grew more and more worried and then Alvin began to fear they would mistakenly put Tara's kidney in someone else. We knew that the second Tara's kidney was taken out it had be taken directly to Alvin's O.R., next door, for insertion into Alvin's abdomen. But we were still in the Same Day Surgery waiting room. Five complete hours went by before they came to get Alvin. We were frightened, but more so, completely livid at the lack of communication, unprofessional behavior and carelessness of the Same Day Surgery reception for being so dismissive of our fears.

Once Alvin was back in a cubicle we demanded to talk to someone, anyone, who knew what was going on. Here's the scoop:

Sometime before midnight the night before, a young man committed suicide. Almost at the same time, another young man literally drank himself to death. Both bodies were raced to IMC for possible donation of their organs. As soon as they arrived, our surgeon began the removal surgery (called harvesting the organs (a bit cold I know, but it is the term they use.)) As soon as the match was made with a potential recipient, they, the recipient, was called and told to be at the hospital by 3:00 a.m. in order to receive the needed organ. He/she didn't bother to show up until 7:00 a.m. Therefore, they were not able to began that transplant until 7:30ish. Hence the delay.

Oh yeah, one more little bit of info, Tara had NOT gone into surgery, despite what we'd been told. She was on her gurney, tucked into a little cubbyhole outside the O.R. waiting her turn . . . for 2 1/2 hours. Her mother and sister had been told about the cadaveric transplant, which always pushes live donor transplants back, but somehow they were given the mistaken impression that Alvin was receiving the kidney from the teenager while Tara's kidney was going to someone else. With that little bit of misinformation they became frantic as well. But, we were still in the waiting room, so that clearly wasn't so.

Eventually the mess was straightened out, after a very stressful five hours, when Anne (the nurse practitioner for the Transplant Team) came out of the O.R. and came to talk to us. She'd been told how upset we were, but not why. By the time we told her everything that had happened, she was horrified and explained everything that had gone on to that point and Tara was definitely NOT in surgery.

You know, a little bit of checking of the facts would saved a lot of fear and rage that morning instead of the relaying of one bit of false information after another. Simple protocols, put into place, would have avoided the entire mess . . . but this was only the beginning of what we were to see as a major breakdown in patient care.

At 11:30, a full six hours after we'd arrived, Alvin finally went into surgery. Dr. LeGrand Belnap was nothing short of brilliant. The protocols of the hospital were horrific, but his skill and tenacity in completing the transplant/tummy tuck (or plenectomy as they like to call it, assuming I've spelled it right) was amazing He and Dr. Van der Werf (the surgeon who operated on Tara) did impeccable work.

Tara's surgery took three to four hours, with three hours in recovery. Tara was taken to her hospital room where her mother and sister were waiting to help care for her.

Alvin's surgery took 6 1/2 hours with two hours in recovery. It was decided Alvin should be taken to ICU because of how long he'd been under and his sleep apnea. They wanted to have someone constantly checking on him, which he would not get on a regular floor.

When they finally let me in to see him, at 9:00 p.m. that night, I was astounded at the difference. His eyes, which had been bloodshot and yellow for years were absolutely clear. I'd spent an hour or so in Tara's room, waiting for the idiots in the hospital to communicate and get Alvin where he was supposed to be. They wouldn't let me near him, so I saw how laid out Tara was by her surgery. I expected the same with Alvin. But he was laughing, smiling, talking . . . doing absolutely fantastic. The difference in his face, with the new kidney in for just a few hours, was astounding. I can't begin to explain the difference. Whereas illness hung over my husband constantly, for the 13 years we'd been married, now health fairly emanated from his body. Yes, he'd had a massive surgery, two major procedures, but he looked absolutely amazing! I was shocked, as was his brother. The kidney began working the second they hooked it up in Alvin's body. Absolutely astounding! They'd prepared us for an up to 3 month delay of function because organ's often go into shock after being transplanted. But not Tara's kidney . . . I believe we have all the fasting and prayers to thank for that!

I was able to spend an hour with Alvin before I had to leave. I couldn't spend the night in his room, as planned, because he was in ICU. I called a missionary son of ours, Jarel, as I left the hospital because I was beyond exhausted. Truly bone deep exhausted. I wasn't sure I could make it home. I spoke to him for a few minutes and then called our good friends, Scott & Lori, and they spoke to me the rest of the way home so that I wouldn't fall asleep. I pulled into our driveway at 10:25 p.m. and was in bed and sound asleep by 10:30 . . . I kid you not. It's a miracle I managed to even get my jeans and t-shirt off first.

By 6:45 the next morning I was on the road back to the hospital. Sadly, I'd forgotten their shift change hours are different than Utah Valley Regional Medical Center in Provo. When I arrived, they wouldn't let me in to see Alvin until 8:30. So back into the elevator I went and took a ride to the 10th floor where I spent that time with Delyle (Tara's mother) and Tara. Tara was in so much pain and very nauseated from the pain medication. It took two, maybe three days, to get that straightened out. Once they did her real recovery began. What a sweet angel that woman is . . . Tara endured so much pain because of her gift of life to Alvin. We can never express, nor fully repay, this incredible thing she has done for my husband. Truly, I have prayed constantly for her quick recovery and the blessings of heaven poured out upon her and her family for the remainder of their lives.

Finally I was let in to see my husband and he was doing great. They had him on a dilaudid drip, which was causing him to itch head to toe. So they were giving him Benadryl, or actually it was something else, I can't remember now, to counteract the itch. His night nurse, Shannon, was really wonderful, as was his nurse that morning. We were really blessed.

Toward afternoon, when Alvin was finally given the go ahead to be transferred to the 10th floor, Tara's sister, Amber, sneaked into ICU and found us. She told us the room next to Tara's was being cleaned, gave us the number, and we immediately began conspiring to make sure we got that room. We told everyone who came into Alvin's room that we wanted to be in 1008. Amber went up to the 10th floor and told everyone there that Alvin was being transferred to 1008. I'm not sure what worked, but that is where we ended up, right next to Tara. We were very happy about that. When they could overcome the pain, they were visiting in each other's rooms. With Delyle staying with Tara, and me with Alvin (showed up Wednesday morning and didn't leave until yesterday, with my husband by my side) we had fun with each other, as much as can be had in that amount of time.

Here were the downsides:

• In the O.R. waiting room we were subjected to constant announcements over the P.A. - Trauma in O.R. 2! Code Blue in O.R. 8. On and on it went. For those of us in there for 4 to 8 hours it was a harrowing and heart wrenching experience wondering if that call was about our loved one! It only took me two hours to get the bright idea to go see which O.R.s Alvin and Tara were in. We were lucky, there's were never called. The psychological trauma of those constant announcement were great upon those waiting in the waiting room though.
  

• Tara was on ice chips until the morning she left the hospital due to a miscommunication. Once we found out what was going on, Alvin ordered me to get it fixed. We (Delyle and I) did and got her a meal, which she could only eat a portion of, before she left. They released her and she couldn't get out of there fast enough. Amber, her sister, said they were keeping her there, starving her, so they could harvest the rest of her organs. An exaggeration, but the patient care was so severely lacking we didn't laugh very hard.

• At times, it took up to 20 minutes before anyone would answer the nurse call button. One of Alvin's tubes (the one directly to his heart) popped loose on Wednesday night and blood was pouring out everywhere. I had to race outside and find our nurse because no one responded. Granted, I only gave them 30 seconds before I raced out of his room and found his nurse. But Alvin and Tara suffered with this lack of response so many times or even no response at all.

• That same night the tube popped loose, Alvin's nurse and his aide had a passive/aggressive fight right next to Alvin's bed at 3:00 a.m. Yeah, you read it right. I was so angry when I woke up to that and realized what was going on. Alvin and I looked at each other, but both of us were still shell shocked from the last 48 hours that we didn't say anything until the next morning. I have to admit, the fight has been beaten out of me because of the last few years. Two years ago, both of them would have been kicked out of the room and their heads figuratively ripped off. I would have reported them and they would have been immediately replaced. That night, Alvin and I just shook our heads and prayed they leave the room. Yes, I am writing a letter to a number of people detailing all of this.
  

• Anti-rejection medications were not administered according to schedule. Alvin is supposed to get his anti-rejection meds every twelve hours with a very small window of wiggle room. One of his nurses consistently brought the medications an hour to an hour-and-a-half late. Not within the window of time, just so you know. We lived in fear that the kidney would be rejected. Luckily they were giving Alvin another medication which builds a bridge so that the body can accept Prograf, one of the anti-rejection meds. Otherwise, I do believe rejection would have set in. It didn't matter who we talked to about it, no one did anything. We got his meds when they were good and ready to give them to him and they didn't care about any deadlines. I asked the nurses, the doctors, the pharmacist, was this standard procedure and had they terrified us about the medications while misleading us about the importance of the medication schedule. No, they assured us. This should not be happening, Alvin should have been receiving his medications every 12 hours. Of course I followed it up with, "Why hasn't he then?" Contradicting answers, prevarication . . . we were subjected to it all.

• At 4:30 or 5:00 each morning these idiots dragged a scale into Alvin's room (a big huge mama honkin' one, not one like we have in our homes) and made him wake up, get up and stand on the scale. Have these people never heard that all healing takes place during sleeping hours? But nevertheless, there they were, regular as clockwork every morning. Crazy.

We had three of incredible nurses: Melissa, Jennifer and Pam and three incredible aides: Adela, Breann and another whose name I cannot remember, on the 10th floor. The rest of them, including the aides, should not be working on the transplant floor.

And so it went every day, in Alvin's room and in Tara's, Delyle and I doing the best we could to take care of Tara and Alvin and make sure they survived the lack of quality patient care. Again, protocols put in place and followed would have alleviated all of the problems, literally all of them.

By the second night, Alvin stopped all the pain medication because it was making him itch so bad. He just cowboyed up and hung in there. Let me give anyone advice regarding tummy tucks. Don't do it! Alvin had little to no pain from the kidney transplant and is still having massive pain from the tummy tuck. I don't know why anyone would put themselves through that! Hit the gym and avoid it at all costs. The after care is no picnic either.

Despite all of this, Alvin and Tara continued to progress. Alvin's health is absolutely amazing. I still, every hour of every day, am amazed at the increasing strength and health of this man. Everything is functioning as it should.

On the last day, Alvin had made it through without any complications. It was a red-letter day and we were so excited. It was the day he was coming home. The aide came in around 4:30 in the morning to draw a sample of urine from Alvin's catheter. This was normally the lab tech's job, but for some reason she was doing it instead of one of them. A catheter, as many know, has a balloon filled with liquid inside the bladder to keep it from falling out. If that is pulled, without the balloon being deflated great damage ensues, along with huge amounts of pain. Yeah, you guessed it, she pulled on it. My husband, who has a very high tolerance for pain, was literally racked with overwhelming waves of pain that caused him to tremble. Blood began to pour from the catheter and the nurse was brought into the room. It was five hours before the decision was made to take the catheter completely out. Alvin was in excruciating pain the entire time.

When the catheter was finally removed 95% of the pain dissipated immediately. The rest, he continues to deal with, along with a damaged urethra which is slowly healing. Alvin and I were so upset, for a variety of reasons, but also because we had asked them to be especially careful with his bladder. Two years ago, when Alvin was at death's door and the last emergency surgery was performed, the catheter was inserted so roughly it poked a hole in his bladder. So this time, we asked that special care be taken.

By this point I'd completely had it. They mentioned they might not release him that day and I put my foot down. I told them I was taking my husband home because I could take better care of him there than they were there. I went down the list of the problems which had occurred from the beginning and explained I wouldn't leave my husband there another day.

I brought Alvin home from the hospital late yesterday afternoon. He had a rough night but is drastically improving with every hour. He is not allowed to go to church or be in big crowds (due to his suppressed immune system) for the next 6 to 8 weeks, but he is doing great. The pain is lessening with every hour and we are so grateful to see how healthy he is feeling, despite that pain.

We are eternally grateful for this miracle which has occurred and that Alvin's life has been spared and extended. I love this man with my whole heart and life without him was a dismal proposition which brought me to great despair. Tara, with a generous heart, gave him a new life and April 15th is no longer tax day for us, but now is New Life Day. It will be a yearly anniversary greatly celebrated.

Thank you so much to all of you who prayed and fasted on Alvin and Tara's behalf. You have truly helped miracles to come about. Daily I watch Alvin become stronger and healthier and we are so excited for the rest of our lives. Right now we are living each day learning the medications, remembering to weigh, take temperatures and blood pressures morning and night, tracking his numbers, etc.

As an example of the health which grows, here are the numbers we track:

Hematacrit (Red Blood Cell Count) -- Tuesday: 46, Wednesday: 40.9, Thursday: 40.1, Friday: 35.3, Saturday: 36.2, Sunday: 37.8, Monday: 42 (Effected by I.V. -- Normal 36 to 46)

White Blood Cell Count -- Tuesday: 11.5, Wednesday: 10.6, Thursday: 8.6, Friday: 5.6, Saturday: 4.1, Sunday: 5.3, Monday: 7.8 (Immune system depressed to prevent rejection. Desirable level: 3.6 to 10.6)

BUN -- Tuesday: 40, Wednesday: 36, Thursday: 39, Friday: 35, Saturday: 30, Sunday: 25, Monday: 22 (Desirable level: 6 to 21, high levels indicate kidney failure.)

Creatinin -- Tuesday: 12.2, Wednesday: 6.9, Thursday: 3.5, Friday: 2.2, Saturday: 1.9, Sunday: 1.6, Monday: 1.5 (Desirable level: 0.6 to 1.1, high levels indicate kidney failure.)

His levels just get better and better every single day. His Creatinin and BUN are two levels we have watched for years. To see them getting more normal every day has just been the most wonderful thing.

May God bless each one of you who participated in the creation of a new and healthier life for my husband. Some of you donated money, many more of you prayed and fasted and others offered continues words of support and love. All were deeply appreciated. Our hearts were deeply touched by outpouring love and support given to us at this time. Thank you, thank you, thank you.

I am truly beyond exhausted, so if this rambles a bit, I apologize. I'll probably remember it better once I've had a few nights rest. In the meantime, good night my sweet friends and family. My the Lord watch over and keep you safe.

To those of you at IMC who truly cared for my husband I express heartfelt gratitude. You know who you are because we made a point of thanking you at the time. But with all that went wrong during this hospital stay, we have not forgotten your kindness or thoughtful care of Alvin during this momentous and scary time. Thank you.

Addendum: As I read over this I realized I left out my main point for bringing up all the bad stuff: As far as their transplant services . . . astounding! Really, IMC has an amazing transplant team who literally saved Alvin's life with their skill and knowledge. They are the top transplant surgeons and team in the nation. It's the hospital itself I had problems with, and yes, I am filing formal complaints.

But I wanted everyone to know to please be careful about that hospital. If you do have to go there, make certain a loved one remains with you at all times. The do make it easy to do that. Couch pulls out into a bed, if you can get the aide to do it, they'll bring you towels, etc. for showering. If not, I know where they keep that stuff now and just drop me a line, I'll point you in the right direction.