DJ'S JOURNAL

FINDING A NEW NORMAL - PART 1

Three months have passed since I wrote the last entry in DJ’s Journal, ending three days before the transplant surgeries. Many times, I have tried to write about what has transpired over these last months, but I just couldn’t get my thoughts organized enough to go back through everything. I guess that I just wanted everything to get “back to normal” again before I wrote about it. But, something occurred to me recently when I was returning from the hospital. We will never go back to “normal”, as we knew it before the transplant; we are now trying to find a “new normal”. So much has changed in our lives!!! Ron has had some setbacks, sometimes almost like taking one step forward and two steps back.

To begin with, all of our relatives, Ron’s brother, my daughter, and Ron’s daughter, all arrived as scheduled and on time. On Monday, the day before the surgeries, we left for the hospital at 7A where Ron would have periodic blood draws all day long to monitor the levels of the anti-rejection drugs. He wasn’t released until almost 9P, so we arrived at home around 10P and finally went to bed at almost 11P. Although tired, we all survived the very long and stressful day!!!

At 4A the next morning, obviously with little sleep, we were all up and on our way to the hospital. The long awaited day had finally arrived!!!! We were each prepped for our surgeries in individual rooms with our respective daughters staying with us. After we hugged each other, I was off to the operating room first, just after 7A. Once there, the anesthetic put me out, not to wake up until around 2P in my room on the 9th floor, which coincidentally was the same one that Ron was in the day before. As for Ron, he was taken to ICU, in another building and another floor, after his surgery and his Nuclear Renal Scan. We had hoped that he would be brought to the Transplant floor soon, but that didn’t happen. He was having a nauseous reaction to the anesthetic that just wasn’t giving up on him.

My procedure to harvest the kidney was done laproscopically, and despite a sore belly, I recovered quite quickly. On Wednesday, the catheter came out, and the gas and bloating dissipated. Then on Thursday, I was finally able to take a shower. Ron was still in the ICU, but finally, late Thursday afternoon, he was moved up to the 9th floor. Two and a half days after we parted before surgery, we finally got see each other again. All was a bit uncomfortable because we both hurt, but he looked good, even with the growth of “gray beard”.

Both of us were anxious to get out of the hospital, and on Saturday morning, I was the first to be released. I was so glad to be home, in my own bed, and fixing my own food. (Believe me, the food in the hospital left a lot to be desired!!!) Ron came home Sunday morning with a whole lot more stuff than when he left…..the excess hospital paraphernalia and a bag full of “drugs”!!! He also still had the catheter in, which he wasn’t too happy about. Needless to say, he immediately fell asleep in his chair and slept most of the afternoon.

From this point forward, our lives definitely changed, and normal as we knew it was gone forever. Our days are now centered on Ron’s meds and his visits to Clinic for blood draws and doctor visits. Here are some exerpts from my daily journal, chronicling the events of the last 3 months:

*Monday, August 30: Ron’s brother took him to Clinic at 645A and didn’t return until almost 5P. He said that things moved a little slower than they should with the blood draw and seeing his new Coordinator and the doctor. He got a copy of his “blood” numbers…..numbers that we haven’t seen in a very long time. His Creatinine is 2.8, and while still high, that’s much lower than the 4.7 at last reading. The one that bowled us both over was the Uric Acid at 8.6 when it had been as high as 14. And his total Cholesterol is 173…..where did that come from!!!!

*Wednesday, September 1: My belly still aches in some parts and hurts in others, but I’m taking Cassie out in the morning and taking the trash to the bin. That’s about all the walking that I can handle for right now…..maybe at the beginning of next week, I’ll try a little more of a walk around the park.

*Thursday, September 2: All went very well at the hospital today!!! I’m cleared to drive, and Ron’s blood numbers are down even more!!!! Fantastic news!!!! He can even walk down the stairs of the trailer in a normal fashion, instead of one step at a time. Yippee!!!!! Oh, and his catheter is gone!!!! Everyone at the hospital is so happy that we’re both doing so well, but especially Ron, of course!!!!

*Monday, September 6: We both got up before 5A, and we both had a “not-so-good” night. Weird, but then again, we both had surgery on the same day!!! I don’t actually “hurt”, I’m just uncomfortable. I slept, but I didn’t sleep that well. I still feel tired. I finally went off to Wal-Mart, slowly, to stock up on some groceries. The left side of my belly aches....hurts....just bothers. I tried to take a short nap after returning, but was only mildly successful.

*Tuesday, September 7: Because we started for the hospital a little later than planned and traffic on the freeway backed up, we arrived just minutes before 9A. Ron had his blood draw, and he asked to see his Coordinator about his fluid retention problem. Meantime, his vitals were taken; his blood pressure was up, and his temp was 100°. The Coordinator told him to take the Lasix and some Tylenol until Clinic on Thursday when a doctor could see him.

*Thursday, September 8: I took Ron to Clinic early, and when I picked him up later in the afternoon, he had some good and bad news. He had half of his staples removed, but the doctor also diagnosed a bladder infection. All his numbers were still very good, and he only has to go to Clinic once a week now. On Monday, he will have a renal ultrasound to check up on “my” kidney. Before heading home, we needed to fill an RX for that infection. First stop at Kroger, they didn’t have the 3 pills. So over to Walgreen’s we went, and those 3 pills cost us almost $40!!!! We almost fell over!!!!

*Monday, September 13: A very early morning………up at 5A to take Ron to the hospital for his ultrasound and Clinic. I didn’t sleep all that well last night because I just couldn’t get comfortable…….when is this gonna get better??? The one good thing this AM is that Ron actually put his socks on all by himself. Around 1030A, Ron called to have me come pick him up; he didn’t have to stay all day afterall.

*Thursday, September 16: We were both up early this AM because we both have to go to Clinic, as I need some blood tests. We left the park just after 630A, took the train, and arrived at the Transplant Center by 730A. There were quite a few people before us, so we didn’t get our blood drawn until an hour later. That done we headed up to the cafeteria for some breakfast. Back downstairs we waited until we could see Ron’s Coordinator. Fortunately, that wasn’t too long. We discussed getting Ron’s anti-rejections drugs by mail, and she told us that many patients use Medco for that purpose. But, at this point, there still could be some changes, so everything’s still a bit “iffy”. Ron also got his blood test results....still very good, except that his Cholesterol is way up, a side effect of the anti-rejection drugs. My results took some tracking down, and once they were found....also very good....I went back home. Ron called just before 3P to pick him up at the train station. He had seen the doctor and had the balance of his staples removed. Starting next week, only one Clinic day, Thursday, is required, but a blood draw will still be done on this coming Monday.

*Monday, September 20: I got up early to take Ron to the train so he could go to the hospital for a blood draw. When I got back, I walked around the lake once, took my shower, and went back to the train station to pick up Ron. From there, we drove across town to the pharmacy to refill his anti-rejection drugs. We found out that they don’t do the 3-month stuff like Medco, and on a one-month basis, the drugs are very expensive. Sure hope they get these things stabilized soon so that we can get back to some semblance of normalcy.

*Friday, September 24: It’s been one month today since our surgeries!!!! Overall, I think we both feel pretty good, although we still have some discomfort. Ron’s daughter, as well as my daughter, called on this “anniversary” to check up on us.

*Saturday, September 25: Trying to get back into my “regular” routine, I decided to do the vacuuming, sweeping, and washing the rugs. This time, however, I took everything at a much slower pace. Last time, some two and a half weeks ago, my belly hurt something terrible, and I didn’t even move the furniture. This time, I took my time, resting in between each portion, but my belly still ached. It absolutely amazes me at how much my abdominal muscles are affected by vacuuming!!!!

*Thursday, October 7: Ron left at 630A for his blood draw and returned around 1030A. He said that Trina wasn’t there, so he couldn’t find out about how long we have to stay here. So later in the day, I called her with the intention of leaving a message, but instead, she answered the phone. Before I could ask her anything, she asked why Ron didn’t stay for Clinic. I immediately handed the phone to him!!! Turns out that he misunderstood what he supposed to do, and if he had stayed, he would probably been put on an “every other week” regimen. Oh, well!!! She really didn’t give an answer about how long we have to stay either. But it sure sounds like we’ll have another month here.

*Saturday, October 9: Ron continues to be very tired, and he really seems somewhat discouraged with everything. I think that we both thought that everything would just get better faster, and most of his symptoms would disappear after the transplant. That’s not what has happened!!! It’s been almost 7 weeks since the transplant, and he’s still having trouble sleeping, some swelling in his ankles, and a bloating feeling in his belly. He does have more flexibility and less swelling in his hands.

*Thursday, October 14: Another long day at Clinic……trying to get answers as to when we could “get out of here”…..but not getting any positive answers!!!

*Sunday, October 17: Ron got up complaining of the worst headache that he’d ever had. He’d been up and down all night long and had put cold packs on his head. He’s also had some blurred vision and tinnitus in his ears. Later in the day, his ankles were really swollen. He has not complained to anyone, including a doctor, about all this, although the edema has been mentioned.

*Tuesday, October 19: Ron complained of a headache, fever of 101°, and chills almost all day long. He called his Coordinator, and she told him to go to the ER if the temp goes up any higher.

*Wednesday, October 20: Ron woke me up at 4A shivering from chills. He finally got in the shower to warm up after taking his temp....103.7°!!! I took the dog out in the dark, and just before 5A, we were on our way to the ER. There’s got to be some kind of infection in his system!!! We parked in the garage behind the hospital and walked over to the ER. After all the questions and an IV installed, they drew the necessary blood and started an antibiotic drip. At this point, I went down to the Transplant Center to let them know what was going on and then went home. (I needed a shower, and Cassie needed to go out again.) Later, I called the ER, and the nurse there told me that Ron has a “serious” urinary tract infection. After spending almost the entire day in the ER, he was finally moved to the 9th floor, in the same room that I had when we were there for surgery almost 2 months ago.

*Thursday, October 21: As soon as I returned from my walk, I called Ron to find out how he was feeling. He had a really bad night, more fever and sweating. His temp in the morning was 102°, so we’re still puzzled about what’s going on. As for his condition, there’s definitely fluid in his lower abdomen, and that needs to be cleared out before doing anything else. Ron had told me that they were going to remove the stent, but that can’t be done until his urine is “sterilized”, a term that the doctor used. Later a drainage bag was put into his abdomen to allow the excess fluid to be removed.

*Friday, October 22: The doctor told Ron that he has a bladder infection, so he’s still getting antibiotics, including Cipro, and probably won’t be home until Monday. Believe me, he’s not happy about that.

*Saturday, October 23: After my walk, I called Ron to see how he was doing, but they were in the middle of pills and stuff, so I called back a few minutes later. He had a much better night and actually got some sleep. Just before 11A, I called again for any more progress. The doctor had just left, and he said that Ron was doing really well and may get to go home on Sunday. The other subordinate doctor said Monday, but since this doctor is the senior doctor, we’ll go along with him. We’ll see tomorrow!!!

*Sunday, October 24: After the doctor approved the release, and the nurse ordered the wheelchair and removed the IV, Ron finally called about 1245P. I drove up to the hospital, but because of all the “hurry up and wait” stuff, I waited for 20 minutes before he finally got down to the car.

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Unfortunately, this hospital episode was only the beginning!!! With more to come, I will stop here for this first part of “Finding a New Normal”.