such small hands

Transplant: Progress

At Monday’s clinic visit, the doctor discontinued a couple of the medications I’d been taking. One of them was an Aranesp injection, for anemia. Now that my hemoglobin is at a healthy level, I don’t have to endure that little twinge every week.

The doctor also cut back my clinic visits. Now I come in weekly for labs but see the doctor only every two weeks. This is a sign that everything is progressing as it should.

Meanwhile, I’m able to be a little more active as I build up my stamina by walking. We had 3 to 4 inches of new snow today, so instead of driving to the Walgreen’s to pick up some prescription refills, I walked the two blocks or so. It wasn’t that cold and the snow is very pretty, so it made for a pleasant walk.

I’ve been doing my own cooking most nights. Mostly casseroles and one-dish meals that make good leftovers for lunch the next day. A lot of things with cheese and tomatoes that I wasn’t able to have while on dialysis. One night a week, usually Saturday, I still devote to carry-out, so we can have favorites like pizza and Mexican food. Ken has been packing leftovers in his lunch for work, and says he’s even lost a couple pounds this way. Eating every meal from home has definitely made a difference in the food bill. Even with a much fuller grocery basket every week, I’m only spending $20 or $30 more, which is about equivalent to one meal out for the two of us.

Transplant: Four Weeks

It’s hard for me to believe it’s been four weeks yesterday since my surgery. In some ways, Ken and I still feel as if it’s all a dream.

My lab results have been great and showing that the kidney is working the way it should. My last creatinine was 0.9. Side effects from the various meds are diminishing and I am needing much less pain management.

At Monday’s clinic visit, the doctor said I could begin to venture out in public. So that night I went to the grocery store with Ken and last night we went to the Lenten service at church. It was a little tiring for me, but it was so great to see people again.

The doctor also said I could drive, so this morning I drove to the doctor’s office for my lab tests. Ken went along just to be sure I would be OK, but I did fine and it was a great feeling of accomplishment.

Having a little more mobility is nice, especially because I am quickly growing bored with the talk shows on TV. I don’t even want to get sucked into the soaps, so I turn the TV off between noon and 3 p.m. when Rachael Ray comes on. Fortunately, one of my friends at church lent me his copy of Bill Bryson’s “A Short History of Everything” and that has kept me fascinated. I can’t wait to pass it along to Ken, who loves reading science arcana. And then there are the income taxes … so maybe I am not as bored as I thought.

They Put It Where?

Inquiring minds are asking, "So where does the new kidney go? Are the old ones removed?"

I still have my original kidneys. They are difficult to access surgically, so unless they are causing infection or are cancerous, there's no need to remove the non-functioning kidneys. Eventually they shrink from lack of use.

The transplanted kidney is placed in the lower abdominal cavity, inside the pelvis, on the left or right side. My first transplant was on my right, so this new guy is on the left. Again, because my first transplanted kidney was not causing infection or rejection problems, it is still in place.

Are you keeping count? That means I have four kidneys in my body, only one of which is functioning: the two I was born with, the 1980 transplant and the new one.

Transplant: Making Progress

"Every day is a winding road (I get a little bit closer). Every day is a faded sign (I get a little bit closer to feeling fine." That's been my theme song of recent days. Every day, in small ways, I keep getting better. This post brings you up to date on my recovery.

Ken bought me a shower bench so that I could sit and rest while cleaning up. As I get back in shape, I'll be able to stand up the whole time. I can almost do it now. Except I can't really bend over yet to reach my feet and lower legs. I have to sit down for that. It's great to have the help.

After a day or two of using the anti-nausea medicine, my tummy and I are friends again. My old dialysis nemesis, potassium, is a little high, so the doctor advised me to go easy on the orange juice and bananas. I guess I went a little crazy at first with those formerly forbidden foods.

The Procardia is pretty well managing the high blood pressure. And I'm thinking I still need the Vicodin. When it starts to wear off, the BP goes up in proportion to my discomfort. So I think I'll keep using it for the time being. Especially when the pain keeps me awake at night. It's still not comfortable to sleep in any position except on my back.

My creatinine has gradually reduced --- now I am in the normal range with a 1.8 level in my Thursday labs. Calloo callay!

At my clinic visit this past Thursday, the nurse removed the staples from my incision. She counted 26. I haven't measured it, but I'm estimating the scar's about 10 inches long or so.

Friday morning I saw a urologist who removed the stent that was placed to protect certain connections for my new kidney (between urethra and bladder? not sure). I was really dreading this procedure and praying about it a lot. Although it was fairly uncomfortable, it was over quickly. And now I am free of all tubes and extraneous hardware. It's just me and my new kidney.

I've done a little light cooking. Put together a chicken-broccoli-cheese casserole on Thursday night. And browned up ground beef with jar spaghetti sauce and angel hair pasta for Friday.

Amy came home for the weekend. We've been bonding over DVDs, neither of us budging much from sofa or chair all day Saturday.

Transplant: Early Days at Home

Coming home from the hospital is always good news and the positives far outweigh the negatives. You have control over your schedule and food. It's usually quieter. You have your own bed and your own stuff.

But you're also responsible for more things. In the hospital, the nurse brings you your meds on schedule and you just take them.

I came home with seven new medications. I won't be taking all of them forever, but for now this is where I am living. I also took home a great little info book that tells me about my meds, how to recognize rejection and other critical info. It's a great patient tool, and I referred to it constantly in those first days at home. In the back of the book are charts where I have to record my temperature, blood pressure, weight and urine output. When I go to post-transplant clinic twice a week, my records help the doctors see how I'm doing.

Some of the meds can be taken with food and some can't. Two of the drugs have to be taken at least an hour apart. It's complicated and those first days at home were a bit overwhelming. I kept referring back to my little grey book to make sure I was taking the right med at the right time. For someone with little education or a language barrier, I thought, how hard would this be for them since I am struggling so much?

My solution was to use a regular spiral notebook to track my meds. I created a simple chart with the meds down one side and days across the top. I noted how many times a day and what time I needed to take each med. Then I checked off each item as I took it.

Although I could eat pretty much anything, and women from St. Paul were keeping us well supplied with meals, I was still not at peace with my stomach. It seemed as if I would sit down to eat and the aroma would trigger a wave of nausea. I fought the dry heaves, they subsided, and I'd eat a little.

Then there was the pain. From the incision and the underlying muscle work Dr. Cohn had to do to get this big boy to fit in my little body. It was not so much intense pain as it was continual. I would have rated it at about 6.5 on a 10-point scale. Just enough to sap my energy and keep me from sleeping well. I thought that Extra-Strength Tylenol would manage it, but it was just not enough. By my first clinic visit on Jan. 31, I was begging the doctor for Vicodin. The drug of choice for me and Dr. House.

I also told the doctor about my trouble with nausea and he prescribed something for that. I took it a few minutes before the meal and there was no more problem. After a couple of days, I didn't need to take it at all.

I also started on a low dose of Procardia. My blood pressure was too high for a new kidney. One of my meds raises blood pressure, so this may not be a forever thing.

Transplant: Hospital Days

The days between moving up to the regular renal floor and going home all run together in a blur for me. It was hard to even keep track of what day it was.

Gradually I moved from a clear liquid diet to full liquids to soft foods. Still, there were struggles with nausea. Or I would be hungry, but then the meal trays would arrive so late, I’d be past hunger into nausea. But as the days passed, I managed to eat a little more.

Through the doctors’ daily visits, I learned that the incision was looking fine and that the kidney was ramping up to do what it is supposed to do. By about the third day, they removed the Foley catheter and I was able to go to the bathroom by myself. Anyone who’s ever had surgery knows that it’s important to get that digestive system working again. I’ll just say that I’ve never needed to be more interested in another human’s eliminations since I was potty-training Amy.

I still needed the Dilaudid for pain, but I was trying to use as little as possible, especially because it has a tendency to slow down the bowels. I didn’t want to be working at cross purposes with myself. One night I was having an especially difficult time falling asleep, and the more I tried the more worked up I got. Finally my nurse Bill convinced me that a half dose of the pain-killer would be OK. I can’t say I fell into a sound sleep, but it did take the edge off and calmed me down considerably. This wouldn’t be the first time I would discover the benefits of good pain management.

Freedom from the Foley also allowed me to get up and walk around the hospital hall — wearing my mask of course, and rolling my IV tree around with me.

I had a few visitors: my good friend Margie, Phil and Althea from 1st Presbyterian, and of course Pastor Schultz. Ken would pop in for a little while around lunchtime and then he’d stay from dinner until 9 or so. My work pals on the creative team at Carlson put together a very thoughtful and useful gift bag: notepad and pen, hand lotion and a teddy bear.

Teddy was very useful in a couple of ways. I’ll never be too old to snuggle a teddy, especially if I tear up over some story on one of the daytime talk shows (Rachael Ray did a segment on kidney transplants, with Cojo and two couples; the men donated kidneys to each other’s wives). But teddy also was handy as a pillow so I could hold a little light pressure against my incision when I was sitting up.

On Day 5, Monday, the doctors were making noises about letting me go home. They took out the central IV line and one of the JP drains in my abdomen. The other one was still draining quite a bit, so it was left in. After a bit of confusion, back-and-forth between doctors, and paperwork, and they let me come home about 9 p.m.

Transplant: Getting Through Surgery

By about noon on Jan. 23, they were ready for me to come down for the surgery. I spent about another hour in the pre-op area. I met my surgical nurses, who started an IV. And the anesthesiologist. And my transplant surgeon, Dr. Cohn. Neat guy. Nice guy. Small, dark and intense. I knew I was in very good hands.

Dr. Cohn spent some time “playing” with the new kidney, as the nurses put it. Basically, he was checking it out to see how well it would work. I was taken into the OR and basically don’t remember anything after that until I woke up in post-op some 5½ to 6 hours later.

Coming out of anesthesia is always a little weird, and this is the first time I remember gagging a bit because I’d been intubated. Much better after they took the tube out. But I had plenty of other tubes to watch out for: a Foley catheter, a central line IV, and two JP drains in the sides of my abdomen. I waited in post-op longer than usual because there was some miscommunication about when I would be out of surgery and taken up to ICU. It may have been about 11 p.m. by the time they got me to my bed.

Ken poked his head in for a moment while I was in my post-op fog. I remember he mentioned that Pastors Roy and Jan as well as Pastor Schultz had been there. Like I have said before, I felt totally supported by prayer.

The next morning I felt … just OK. After such a long fast the day before, you’d think I would have been starving, but not really. I had some clear fluids: chicken broth, apple juice and Jell-O. Not bad, but I felt a little nauseated, and it would take several days before I was really back on good terms with my tummy.

I washed up a bit at bedside and sat up in the chair next to the bed for about 6 hours. I was getting regular doses of Dilaudid for pain, so sometimes I’d just randomly doze off in the chair. Still, I thought it was pretty amazing for me to be sitting up less than 24 hours after transplant surgery.

Apparently the doctors thought that was good progress too, which was why they moved me up to the regular renal floor on Thursday evening.

As for my donor, all the doctors would tell me is that the donor was a 21-year-old man from Michigan. May God bless and comfort his family.

Transplant: How It Began

We read that the day of the Lord will come like a thief in the night. Well, for me, a new kidney came in a similar way … in the night, at a time when I least expected it.

Ken and I were fast asleep in the wee hours of Wednesday, January 23. I was having a vivid dream about being slowly and relentlessly pursued by a tiger through a house. The tiger had just come through the door I was hiding behind and was sniffing at me. I was trying to decide whether to be terrified. Like Aslan, the tiger was not safe. But I wasn’t sure if he was good.

I was jolted out of this dream by an urgent pounding on my front door. A check of the clock showed it was about 2 a.m. A glance out the window showed a Royal Oak Police car parked on the street outside my house. “What the …?” I thought as I groggily struggled into a robe and down the stairs.

“Mrs. Miller?”

“No, no it’s Millinger.”

“Yes, that’s right. Your doctors have been trying to call you. They have a kidney for you over at Beaumont.” And the officer gave me a scrawled note with the doctor’s name and phone numbers.

Let me explain that some time ago, in an effort to save money on our telecommunications bills, I switched our land line to a cell phone. And I don’t sleep with a phone beside the bed. So I never heard any of our three phones ringing repeatedly. It’s a good thing the doctors are persistent.

I told Ken the news and he was stunned. We both thought we were dreaming. But when I talked to the doctor, he verified that indeed they did have a kidney for me. He instructed me to get a few things together and head over to the hospital at 6 a.m. for admission.

Believe me, there was no sleeping at the Millinger household between 2 a.m. and 5 a.m. Sure we got back into bed and tried to rest, but there was no sleeping. Excitement, joy, fear all conspired against it.

We drove through the cold darkness, went through registration and walked up to a room on the 5th floor. Here we basically waited as we saw the doctors and prepped for the surgery. I had blood drawn, an EKG and a chest X-ray. I showered with some special soap and put on a clean gown.

Ken made phone calls to everyone who needed to know. His niece called out of the blue just because she felt a burden that he might need something. We prayed with one of the hospital chaplains and we prayed with my former pastor. So many people had been praying about this for so long, how could I be afraid? God’s presence was everywhere.

To be continued ...