Kidney Transplant – 5 Years Later

July 24th marked five years since we did it. The day passed like any other, and I never even stopped to remember it was the anniversary of Dad’s and my surgeries. The only reason I’m thinking about it now is because I took him to the transplant clinic in Minneapolis on Thursday for his annual check-up.

Dad was almost sixty-eight years old at the time. He was in bad shape, a lifelong diabetic with a history of heart problems. His kidneys had been failing for some time by the time it became necessary to think about options beyond dialysis. Most of the time when I’d go see my parents those days, he was sleeping. His skin was jaundiced. Dialysis took everything out of him. We wondered often how long he might continue to be with us.

I know people wondered why we were going through with it. I know they wondered because my own husband carefully asked me several times if I was sure. Would I be devastated if I gave up a kidney and after going through it all, it didn’t work? But I didn’t have a choice, at least in my own heart. Once I knew I was a match, I knew I had to go through with it.

kidneysHe’s doing great these days. I mean really great! He’s mostly limited by his diminished vision and frustrated by his inability to drive. Otherwise, his health is pretty good. I sat with him while he met with his nephrologist on Thursday and talked about how he feels most days. Dad mentioned some stomach discomfort he suffers pretty regularly. His doctor said it was likely due to an immunosuppressant (meant to prevent his body from rejecting the kidney.) The doctor said that he could probably reduce the dosage. He said they are finding that older transplant patients often don’t need as high of a dosage as some younger patients. “And besides,” he said. “You’re doing very well after five years. Probably because the kidney was so well-matched!”

I couldn’t help but smile at that. MY kidney was a good fit for my dad! My friend Megan always says he got a new lease on life and I guess it’s true.

The doctor asked me how I was doing these days. “Excellent,” I told him. Really, I hardly ever think about it anymore, except when I reach for that bottle of Advil and remember I’m not supposed to have it. Small price to pray to be given the gift of more time with my dad.

 

Life is Good – October 10, 2009

Snow - on October 10th by you.All day yesterday, I kept hearing we were going to get some snow overnight. I didn’t really believe it was true but when I opened my eyes first thing this morning, I peeked out the window and there it was! I have to admit, the sight of the snow on the ground made me feel like a kid again. It still had that magical charm a first snow always held when I was young. But…I’m still holding out hope for an Indian Summer! It’s too early for winter just yet.

It’s been a busy week with lots of good things going on. At the office this week, we celebrated National Customer Service week. The boss and a few others did a great job of putting together some really fun team building activities. People were enthusiastic and there was a lot of laughter. And yours truly won a virtual scavenger hunt with a prize of two bonus hours of PTO time. What an excellent prize!

Kacey is still knee deep in volleyball season, playing for both the J.V. and varsity teams.  It’s so fun to watch her play a game she loves so much. She is a constant on the J.V. team and her confidence grows each time the varsity coach puts her on the court. I am so very proud of her!

On Thursday, I went out for an early morning run. I have to admit, after a year of running, I’ve begun to grow frustrated with what feels like a lack of progress. I often feel like I’ve hit a brick wall or even that I’m losing ground. I often feel like I lack the stamina to run the same distance I always try to go. I have begun to think, “Maybe I’m just not a runner.”  But I made myself get out there again that morning, and something was different. I don’t know what it was, but I kept myself on pace and everything just clicked. I felt great and just like that, my motivation returned. I returned home and thought, “I AM A RUNNER! WOO-WOO-WOO!”

And the best news of the week? I finally went in for my one year post-donation check-up (just a few months late – I should have been there in July) and my kidney appears to be functioning perfectly! And the one that now belongs to my dad is working great too!

Life is good!

Life is Good – July 24, 2009 – Our Transplant Anniversary

It’s hard to believe it’s already been a whole year. Last year on this day, I was a patient at the Hennepin County Medical Center. So was my dad. I was donating my kidney. My dad was the recipient. After several years of dialysis, he finally had hopes of surviving on his own again.

My dad and me, just before our surgeries

It was an amazing time for my dad and me during the weeks preceding and following our surgeries. I was gathering information trying to learn all there was to know about being a kidney donor. I was connecting with people in the online community who had donated a kidney too. Michael, better known as De-I is one of those people. He supported and encouraged me from the start, shared his own story and has remained a cherished friend ever since.

My dad was preparing for a major and difficult surgery and what I remember best about him at that time was how hopeful he seemed. After several years of dialysis, feeling sick and tired and as if he was missing out on a big chunk of life, he was ready to get back to the business of living.

I also remember being surprised at how so many people seemed, I don’t know… I guess, kind of… awestruck… at what I was doing. Maybe it’s because I was doing it for my dad and once I knew I was a match there simply was never a question as to whether I wanted to do it. I certainly never felt like I was doing something amazing, and I still don’t. It was just something I had to do. The decision wasn’t really a decision at all. It was merely an understanding that this was something I would be doing. And it was one of the easiest things I’ve ever done. It really was. There was some pain after the surgery. True. But once I was home, two days later, healing happened quickly. Aside from being a bit tired for a few weeks, my life returned to normal; you might even say, better than my previous normal, very quickly. Afterwards, I had a new appreciation for the body and began to respect my own a little better than in the past.

As for my dad, he is doing phenomenally well. I know as well as anyone that an organ transplant doesn’t always have the happy ending that is anticipated. Not true for my dad. I think he is doing infinitely better than anyone ever expected. Just a few months after surgery, my parents were able to move to their winter home in Arizona. Although I kept in touch by phone and heard things were going well while they were away, I was still amazed when I saw my dad for the first time when they returned home to Minnesota this past spring. He had energy and spunk. He wasn’t so sleepy all the time and he was back to his old self and getting on my mom’s nerves again! ;-) It was one of the simplest things that really solidified for me the reality of my dad’s recovery. He was able to mow his own lawn again. Seeing my dad zipping around on his riding mower made me incredibly happy. I can see my parents house on the next block from my own driveway. I’ll often stop to just watch my dad as he putters around in his garage. Such a simple thing, and yet so significant to me, considering all he’s been through. He’ll celebrate his 69th birthday in September and I’m sure many more in the years to come.

Jake & Grandparents by you.

My mom, Jake and my dad, last month

I don’t think much about the surgeries anymore. Life is back to its normal routine. I do however, pause when I see my reflection in the mirror and the scars that remain from my incisions. A couple of those scars are pretty ugly, but they don’t bother me at all. Rather, they symbolize a miracle; the miracle of my dad’s life.

Should I stay or should I go?

My longtime good friend and coworker, Megan, has been calling me almost daily to see how I’m feeling since the kidney donation and to keep me posted as to what’s going on at work, which is not much.

Most of you know that I work in student loans and you might also know that things are at somewhat of a standstill in the industry for lenders who deal strictly in student loans. Since the credit markets fell in the toilet, we are waiting for a government sponsored program to provide funding. The anticipated start date for the program was July 1, but to date, things are still not in place to begin processing loans again.

Megan knows that I began feeling well again in a weirdly short amount of time, and I have constantly assured her that I’ve been doing great. However, yesterday, I was NOT feeling well. I might have overdone things a bit while we were in Bayfield. Who knows, but I did not feel right at all yesterday and I told her this today.

As she has done in the last couple of weeks, Megan encouraged me not to rush back to work. From the beginning, I have planned to return on Monday, August 18th and have never considered extending my time off. In fact, I’ve felt slightly guilty at times for being home when I’ve felt so good. But since I mentioned not feeling well yesterday, Megan pushed even harder for me to take advantage of the short-term disability and take some additional time off.

I’m half tempted to consider it, just to be sure I am 100% before I go back. Yesterday’s episode worried me a little and reminds me I do have to try to relax and rest so my body can recuperate. (And I DID take a nap today.) Also, my dad seems to be improving in leaps and bounds, but now my mom’s health is taking a turn for the worse. I had to take my dad to the transplant clinic yesterday and have agreed to take him again for the other two appointments this week so my mom can rest.

Megan kept telling me that there’s NOTHING going on at work and things are slow. She says she discussed my leave with our boss and the boss even said if she were me, she’d take advantage and spend some extra time at home. Another coworker who is on maternity leave just added another month to her leave since everyone is basically sitting around twiddling their thumbs at work.

If I take an extra week, I’ll get to spend time with Brad during his last week home before he moves back to school. His last day at work is this Friday, so he’ll be around during the days and evenings next week during a time when I normally don’t get to see him. I’ll also have the comfort of knowing I’ve got a little more time to help out my parents if my mom has not improved by next week.

But there’s still that nagging voice in the back of my mind that says I’m feeling pretty good and should only stay home if I’m not truly well enough to go to work. Megan thinks I just don’t know how to relax and assures me my job is not in jeopardy if I add an extra week to my leave.

Am I an idiot for even debating what to do? What would you do?

Our transplant story

It’s been four days since the surgery took place and I’m finally feeling the haze begin to lift. The word last night was that, after a couple of days of ups and downs for my dad, his blood pressure had settled right where it needed to be and the kidney was producing beautifully! Things were a little scary there for a while, and he’s by no means out of the woods yet, but I’ll take last night’s report as a good sign!

I made it through most of the yesterday without any Vicodin, finally taking a dose at bedtime when fatigue was beginning to settle in and a bit of pain had resumed. I woke up very early this morning, at about 2:30 and felt no desire to fall back asleep. I guess I’ll need to work at getting my body back on schedule eventually, but for now, I’ll take advantage of the quiet and feeling well enough to begin to tell the whole story.

Thursday, July 24, 2008 – Music began to play from my clock radio at 3:30 am. I had set the alarm so that I’d have time to hit the snooze button, but I don’t know what I was thinking. There was no way I could just doze off again on this day. I really didn’t need any “snooze” time. I laid in bed for a few minutes, before shutting off the alarm, getting up and taking a shower.

I gave myself too much time. I had packed a bag the day before with everything I might possibly need during my hospital stay; lounge pants and t-shirts, books and my mp3. I didn’t need to put on any make-up or worry too much about my hair, other than keeping it out of my eyes until the surgery. I found myself wandering around aimlessly before it was time to leave, just waiting for Mark to catch up with me.

At 4:50 am, I snuck into the kids’ rooms and kissed each of them goodbye before we pulled out of our driveway and made the short trip to my parents’ driveway so they could follow us to the hospital. My sister and niece were riding with my parents so that they could be with my mom in the waiting room during the surgeries. By 5:00 they were ready to go and we made our way to downtown Minneapolis and into the surgery center by our 5:30 check-in time.

We actually had to wait a few minutes in the outer lobby before the surgery center opened. We sat together in a row of seats, my sister and I actually joking around and snapping a few pictures. I was not yet feeling nervous, much to my own surprise.

(Well, maybe just a little nervous….)

It didn’t take long before we heard the click of the security lock and we were allowed to enter. My dad and I signed a few forms and soon we were called back to our separate rooms to change into our hospital garb and answer a few more questions. I was given a shot of something, in the stomach. I don’t remember what it was or why I needed it, but remember thinking that it burned. It may have been a blood thinner to prevent clotting in my legs. Not long afterwards, our family was told they could come sit with us until it was time to move us to the operating room, which seemed to be only a few minutes.

We were called, along with another man who was having surgery, and his wife, to follow a nurse to the operating room and surgical waiting room. We took an elevator up to the fourth floor, then walked a few long hallways, finally stopping in front of two big doors where we were told that this is where the patients parted with their families.

I quickly hugged my mom, my sister and my niece, finally getting to Mark. After all the past months of feeling ready, confident and comfortable in my decision, this is where I decided to lose it. Without warning, tears began to fall as Mark hugged me goodbye. He realized I was crying and wanted to know what was wrong. All I could do was whisper that I was finally scared. I was trying not to be obvious. I didn’t want to scare my mom or my dad, so I sat there hurriedly wiping the tears from my eyes, as quickly as I could, feeling like a little girl trying to reclaim my bravery. Mark assured me that everything would be fine. He had confidence in the surgical team and he would be right there waiting as soon as I woke up. I managed to dry my eyes before I totally lost it and walked with my dad through the big doors ahead of us.

Inside were rows of beds on each wall and my dad and I were placed on opposite walls so we could see each other until we were wheeled into our operating rooms. I tried to remain calm as I waited and the nurse, noticing I was shivering, brought me an extra warm blanket to cover up with. The anesthesiologist for my dad came and talked to me about how he would take care of Dad during his surgery, knowing the heart condition was a concern. Next, my dad’s surgical team came and talked with me briefly about his surgery. Then my own anesthesiologist came to talk to me about what I could expect. I honestly don’t remember what he said to me. By this time the surgical team was talking with my dad and I was doing my best to hear what was being said. I didn’t think my dad had his hearing aids in and was afraid they would ask him a question and he would misunderstand, but he seemed to be doing ok. Finally, my surgeon came by and talked with me a bit, marked my left side with a Sharpie marker and told me I’d soon be on my way.

The nurse who had been sitting with me told me she was going to give me something that wouldn’t knock me out, but just take the edge off. I remember her injecting it, then getting wheeled off to the operating room as I could feel myself relax. It tried to wave to my dad as I left, but he was surrounded by his team and I don’t think he saw me. I relaxed so much that I remember watching the walls pass by as my bed was wheeled along and thinking, “It’s a good thing I’M not driving right now. WOOOOOOOOOO!” The walls were spinning around me and I smiled at that point. I found myself so amusing that I actually smiled! Those must have been some good drugs!

I remember reaching the operating room and noticing how full of equipment it was. I know that someone was talking to me, but I can’t remember at all what was said and soon I was completely out.

The next thing I remember was someone saying my name, it seemed, very loudly. “TERRI!” I opened my eyes and felt the oxygen mask on my face and could see a nurse sitting beside me. She was telling me that my surgery had been completed, but I was distracted by the oxygen blowing in my face. I felt like I couldn’t breathe and tried to adjust the mask. The nurse gently placed it back where it belonged and told me I needed to keep it there, but I was sure there was too much blowing in my face and once again, I tried to adjust it, this time managing to disconnect the tube from the mask. Once again, the nurse was calm and gentle, saying, “Let me fix that for you.” But again, I was sure I was suffocating and managed to knock the tube off the mask again. Finally the nurse decided I might be more comfortable with the nasal mask instead and gave me the tubes that sit just under the nose. Ahhh, much better.

I’m not sure how long I laid there before I became aware of my dad in the room. I could hear him moaning in pain, but was relieved to know he made it through his surgery alright. It was right about this time that I began to realize that I, myself was in pain and began to hyperventilate. The nurse asked if I was in pain. I tried to answer her, but found I couldn’t speak. I could only whisper, “YES.” The nurse informed me that she would give me an injection of Delaudid and I remember thinking, “Yeah. Delaudid.” A friend of mine had said to ask for that one! The Delaudid took effect immediately and the pain seemed to ease.

The next thing I knew, Mark was by my side and I was being wheeled off to my room. Things were getting fuzzy again at this point but I remember Mark asked how I was doing as I was being moved and I whispered, “I can’t talk! I have no voice.”

We finally got settled in my room, and the rest of the day is kind of a blur of visits from the surgical team, nurses and HCAs (nurses’ aides.) I was assured several times that my dad did fine through his surgery and my kidney was beginning to function in his body. Mark stayed by my side well into the evening, just sitting while I slept and making sure I was comfortable when I was awake, and trying to get me to eat a bit of chicken broth for lunch and dinner. My mouth was extremely dry and he fed me ice chips and offered me ice water as often as I could take it. He expressed concern about my loss of voice, and we were told that during surgery, the breathing tube sits between the vocal chords and sometimes causes a bit of trauma. One of the nurses told me later, when there were signs of my voice returning, that she had been fairly concerned. She said it’s not often that there’s a complete and total loss and she was worried the damage might be more serious. Thankfully, it appears it’s not.

My incisions were checked several times on Thursday and I was not thrilled to see how bloated my stomach was and that there were four small incisions and one large one where the kidney was removed. I had been told to expect three small ones and one large one, so I’ll need to find out where the extra came from. The large one was really the only painful one, but there was other pain to work through, like learning to fill my lungs with a deep breath again. I couldn’t believe what an effort it was to fill my lungs with air, but I was told to keep working at it to prevent pneumonia from settling in.

I was awakened on Friday by the arrival of “breakfast.” I lifted the cover on the plate, tried one bite of some very bland, pasty scrambled eggs and called it quits. My mouth was still insanely dry from the surgery and all I wanted to do was drink ice water. By Friday, I was encouraged to sit up in a chair, which I did, with some pain, while the HCA changed my bedding for the day. I was slightly more aware of the comings and goings of the staff and was able to ask for my pain meds when I felt I needed more. Again, Mark came to sit with me for most of the day as I drifted in and out of sleep. I managed to eat some lunch and took a few short walks down the hallway with Mark’s assistance. When dinner arrived, Mark tried to get me to eat, but the sight of it made me sick to my stomach. I just could not eat. We tried walking one more time, but I was no sooner out the door when a wave of nausea hit and I hustled back to my bed. The nurse told me I was trying too hard and didn’t need to walk anymore that day. I had been hoping to make it to my dad’s room, but had no such luck yet. Mark assured me my dad was ok. I was given some anti-nausea medication in my IV and soon was falling asleep, so Mark left for the day.

Saturday morning found me awake at 3:00 am, feeling much, much better. I found I was able to walk to and from the bathroom on my own, rather gingerly, but I was doing it. The nausea was gone and I was better able to sit upright. I dozed off and on throughout the morning until the surgical team paid me another visit. I was informed that I could now take charge of my direction, and was free to leave whenever I felt comfortable going home, even that same day, if I felt up to it. To be honest, I wasn’t sure I was ready to go home, but the roommate from Hell had arrived Friday in the early morning hours and I had had enough. I wanted to go home. I told the surgeons that I would love to go home, “TODAY.” The head surgeon smiled and said, “Ok, then. We’ll get you all set to go!”

I called Mark and told him I was being released. He couldn’t believe it and sounded uncertain, but I  reassured him that the surgical team had approved me to go. Besides, it would be a few hours before my release forms would be processed and my prescriptions arrived from the pharmacy. So he came back to the hospital to wait with me for the final ok to go.

While we waited, we walked again, finally making it to my dad’s room. He was SO sleepy. He must have been given something to help him sleep and ease the pain because he kept falling asleep mid sentence while we talked. I felt bad because my dad had been doing SO well on Friday, when I couldn’t get to see him, and then today, he had taken a slight turn for the worse. We finally left him to get his rest and returned to my room to pack up my belongings. Mark carried some flowers and my bag to the car while I waited in the room. My prescriptions arrived before he returned and I was told I was free to go.

I’m telling you, that walk out of the hospital was the longest walk of my life. I hadn’t ventured more than a few hundred feet from my bed in the last couple of days and it was a long walk out of the hospital, but I made it. It was slightly painful, but I did it.  And being at home has made it feel as if I’m improving in leaps and bounds. I worried about my dad most of the day on Sunday, but got the good news Sunday night that he seemed to be doing phenomenally well. I have no doubt that this sudden improvement is due to all the prayers and support of our family, friends, and all of you! Please pray, as I will for my dad’s continued improvement. We’re not sure how much longer he’ll remain in the hospital, and I hope he can be home soon.

**********

Thank you to all of you for keeping in touch, for caring, and for all the wonderful comments, words of support and prayers that you offered. I have some catching up to do around the blogosphere, and I have lots of time to do it over the next few weeks. For the moment, I’m going back to bed, but I’ll be around later today and over the next few days, hopefully catching up with all of you.

The Day Before

I cleaned and did laundry like a maniac today, partly because it needed to be done and partly because it kept me from obsessing about the surgery. Although, overall, I’m really not that nervous for myself.

I had a long talk with my mom today. She is a wreck. I told her I sincerely believed that everything will turn out just fine for my dad. There are so many people praying for us, she just has no idea. I let her talk through her fears. She said that she and Dad have not made any kind of funeral preparations and now she wishes they had, just in case. I told her to stop talking like that. I told her we are going to live for today. Tomorrow, we will worry about tomorrow. She is worried that there will be too many people in the waiting room and she’s just not sure she can keep it all together with all of these extra relatives hanging around. I told her not to worry about that either. Everyone knows how much she is stressing and if she loses her cool, no one will blame her. Besides, my sister is in town and will be there and will have NO problem running interference if it comes to that. I really don’t think it will come to that. Everyone who plans to be there will only be there because they love and care for us.

I have a good feeling about this surgery. I really do. It could be that I’m only believing what I want to believe, but deep down, I believe God is trying to tell me it will all be ok.

Tonight I showed Kacey how to write a post on my blog. She’ll try to post an update tomorrow night just to give the basics of how everything went. Things will be quiet here after that until I’m home again on Saturday and then I’ll be back in action, blogging and making the rounds in the blogosphere again.

Transplant Update – Two Days To Go

The surgery takes place in two days. My dad and I went in for our pre-op physicals today. It was much easier for me than it was for him.

I had eight vials of blood drawn. (As usual, I didn’t watch.) Dad had eleven drawn. This is, in part, to reconfirm the match.

Dad and I got some lovely, matching hospital jewelry. The orange one can come off. The red one stays until the day of surgery, unless I want them to re-draw those eight vials of blood.

I was informed (again) of the risks and benefits of kidney donation, as well as my options.

“You know that if you want to back out for any reason, your dad can remain on the transplant list and may receive a kidney from an unknown donor.”

Thanks, but no. I’m going for it!

I signed lots of paperwork and agreed to be part of a research study which means three more vials of blood will be drawn the day of surgery (and I still won’t watch.) I was presented with a lemony cocktail for consumption the night before surgery for the purpose of… you know…. cleaning out the intestines.

A resident who appeared to have recently graduated from the eighth grade reviewed my family health history and confirmed with me that I don’t have an illegal drug habit. I was tempted to tell him I just gave up my meth habit a few weeks ago in preparation for the surgery, but decided this wasn’t the time for such jokes.

After talking with the resident, we were told that it would be forty-five minutes or so before the surgeon was ready to see me, so Mark and I went down to the lobby and enjoyed lunch together in a little restaurant. My dad, meanwhile, was still being poked and prodded and couldn’t take a break.

After lunch, we met with the surgeon who will remove my kidney. I immediately felt comfortable with him and felt a sense of confidence in his ability. He told us he was old enough to have made all the mistakes and young enough to remember not to make them again. Tears threatened to fall when Mark asked him to make sure he brought me back to him. The surgeon promised he would.

That’s all there was to it for me. After shaking hands with the surgeon, we sat down in the waiting room to wait for my mom and dad as Dad’s physical was finally completed. Next, we walked with my parents to another office where my dad would meet with his surgeon. As we waited for my dad to be called in, my mom divulged that they had been told this would be a very high risk surgery for my dad. I had assumed this. Dad has had heart problems. But apparently, no one had made it clear to my parents just how much of a risk this would be. My mom didn’t have a chance to say anything more before Dad was called in for his appointment.

I sat, contemplating the worry that had been in my mom’s voice and wondered if I had even underestimated how serious this will be for my dad. While we waited, the receptionist came over and asked if we would tell my dad that he would not be finished after this appointment as anticipated. He was wanted upstairs again. My head began to fill with fearful thoughts. I was sure that something in his tests today would make it impossible for him to have the surgery. I prayed about everything and anything I could think of… for an ease to my parents’ fear, for skilled surgeons, strength within my dad’s body. You name it, I prayed it.

When my parents finished with the surgeon, we told them Dad had to go back upstairs and we got back on the elevator, heading for the transplant clinic once again. We waited to be told what was next and I had a few minutes to ask my mom more about how the “high risk” warning made them feel. She told me that it is a risk dad is willing to take. He can either continue to live in misery or take a chance at a better quality life by having the transplant. I felt better knowing there was no question in my parents’ minds.

We were soon met  by a woman named Rose who told Dad they simply wanted an EKG and chest x-ray and we had to go to another building. My mom was worn out by this time and needed to rest, so I told Dad I’d go with him. It was a long walk… too much for my dad’s arthritic legs and we had to stop a couple times before we finally got there. The EKG went quickly and I enjoyed a friendly chat with Rose while we waited. After the EKG, Rose walked us to the hospital for the chest x-ray and that’s where we parted ways with her.

Dad and I sat for a couple of minutes before he was called in for his x-ray. He told me he was scared.

“I know,” I said. I had no other words. I wanted to offer him strength and confidence. I wanted to remind him that his God, in whom he has always had so much faith, would be with him; with us. I didn’t know how to say the words. They wouldn’t come. So I just sat with my arm in his and hoped he knew what I wanted to say but couldn’t.

The x-ray took only a few minutes and finally we were back in my parents’ van and heading for home, Mark behind the wheel, me in the passenger seat, navigating, and my parents in the back, holding hands and talking quietly. I sensed their readiness. I felt at ease in my own. It’s all in God’s hands now.