Five years ago on the 25th of February, an anonymous organ donor (deceased) gave the priceless gift of her kidney to Dan. We are so very grateful to her family, who allowed her wishes to be carried out on what must have been an extremely difficult and emotional day. The difference in Dan’s quality of life now, compared with how he felt a little more than five years ago, is incredible — in fact, he started feeling more like himself almost immediately after the surgery, and sometimes it’s easy to forget how sick he really was.So first, sincere thanks to the donor and her family, and to the transplant team at Good Samaritan Hospital in Portland, Oregon, and to all of the nurses and doctors who cared for him during his recovery. And thanks to the people who sent prayers and good thoughts, visited us in the hospital and helped us with meals, childcare, and transportation during that time.
This past Wednesday marked a milestone in Dan’s Excellent Kidney Adventure. After several weeks of normal lab results, with a healed incision and feeling more energetic than ever, Dan has graduated from the Kidney Transplant program. He will now be seen by his regular nephrologist, will continue getting his blood chemistry tested every so often, and only return to the transplant center a few times per year for routine biopsies.
We are so grateful for the care that Dan has received these past three months. His transplant team is the best — the nurses, coordinators, pharmacists, nephrologists, surgeons: thank you, thank you, thank you. When we left the transplant center, we walked over to the hospital to say thanks to the nurses who cared for him right before and right after the surgery: in short-stay, in the critical care unit, in the transplant unit. I had a tear or two in my eye as we walked back to the car. It’s been quite a journey and we are so fortunate.
Thanks to all of our family and friends who have supported us with prayers and more. We are especially grateful to the donor. As Dan improves and gains strength, it is almost magical how this gift of a kidney from a total stranger has impacted our lives. To the donor’s family: we greatly appreciate your loved one’s gift. We can’t say ‘thank you’ enough.
A week ago we participated in our first fitness walk, a 5k for the American Heart Association. We’re planning on doing the Kidney Walk in late June. Let us know if you’d like to join us!
I’m so proud of Dan and how well he continues to do! Yesterday he went to his last wound clinic (yay!) — he’s still about two weeks away from everything being completely healed over, but he’s done with the specialized wound care! He also had labs and a transplant clinic, which went so well that his doctor brought up the subject of Going Back To Work! Heavens, the guy has just had a kidney transplant and he’s well enough already to think about returning to work? Wow! It’ll be part-time at first – his first day back is already planned for this Friday…..Friday?? I know! He’ll need to work part-time for a while until he’s built up his strength. But wow, it’s just made me reflect on the entire journey that Dan’s been through since he was first diagnosed with kidney disease. The kidney transplant has been looming in his future for so long that it became a fixture in our lives…now it’s actually behind him — it’s done, complete, no more looming. It’s an interesting enough mind-set-change for me, so I can’t imagine what it must feel like for Dan.
He plans to visit his old dialysis center, at the suggestion of his doctor, to kind of show the staff that people can get better (it’s got to be a challenge working at one of those centers – it was challenging enough for Dan to be a patient there three times a week, but to work there full-time has got to take a lot of patience and stamina). And to also show the patients that a transplant doesn’t have to seem like such an impossibility — if it’s an option for them, they should at least give it some consideration.
Dan will continue to have labs every week, and attend transplant clinics at least two or three more times before he “graduates” from the transplant program. I am going to miss his team of doctors and nurses – they are the best. But they have new transplant patients to deal with now, and Dan will go back to his regular nephrologist and internist for his regular care — although he’ll always need to have routine labs.
Oh, I almost forgot: Yesterday, Dan also had the routine biopsy. He had to be checked into the “Special Procedures Unit” and then was wheeled into radiology for the actual biopsy. The doctor located the kidney via ultrasound, picking a spot well away from the major blood vessels in the kidney, and gave Dan two injections of novacaine: one just under the skin and another that looked right in the kidney itself. He didn’t feel either injection – so far so good. The doctor then took this huge needle with a plastic-looking attachment, and did a test “thwak!”. That was the biopsy needle contraption and it sounded LOUD when the doctor activated it. A little intimidating, but Dan felt okay because the doctor has been saying all along that it would be nothing like the biopsy he had years ago on his native kidneys. Going through all of those big back muscles to get to the native kidney is the tough part, so no wonder it was painful. This one was much different. The doctor took two samples (that’s two LOUD THWAKs!) and then he was done. He covered up the entry point with a small band-aid, and Dan never felt a thing. Nice! As we were coming out of the room, another kidney transplant patient was waiting her turn in the hall. The doctor asked Dan to tell her how it went, and he said “Piece of cake!”. They called with the results today: normal – no signs of rejection. Wonderful!
Dan skated through his two clinic visits today! First, he saw the transplant docs. His labs are good and his creatinine is even a little bit down. It’ll probably stay between 1.7 and 1.9 as his new normal. They didn’t need to adjust any medications and they even said that since his incision site is finally healing up well, he’s turned into a “boring” case. Well, boring is good! Also, Dan should only need to visit the wound clinic once more, so it’ll be good to go back to just a single clinic — although we really love the nurse that Dan’s been seeing there, and we’ll miss seeing her. The semi-dreaded routine biopsy has been scheduled for the 27th. They’ll be able to see at a microscopic level if there are any early signs of rejection. If there are, I believe they’ll address it with a change in medications.
I can’t believe that Dan only has about a month left at the transplant clinic before he “graduates” from their program. Wow. Looking back, it’s been an interesting trip and it seems like such a long road. But looking at Dan today and the amount of energy that he has — it’s totally amazing. I’m so glad he’s feeling so much better!
We had wound clinic this morning and the nurse was so happy with the way Dan is healing that she updated the wound care regimen so that it’s now tremendously easy to carry out. No more complicated steps and no more multitudes of different medical supplies — a large adhesive bandage and some anti-microbial gel and Dan’s good to go!
More good news awaited us at the transplant clinic. Dan’s doctor gave him the go-ahead to drive! (He did recommend that Dan check out his braking reflexes in an empty parking lot before going for his first drive, just to be sure he’s ready.) I’m sure Dan is excited to be able to escape the confines of the house without calling me to drive him, but I’m really thrilled. Not that I don’t enjoy being Dan’s chauffeur, but it’s going to be great to have Dan available to drop off and pick up Charlie from school and daycare. Whee!
Dan’s lab numbers continue to hold steady and the docs seem happy with his progress. They will want to do a biopsy on the new kidney sometime in the next couple of weeks to evaluate how well it’s doing. They repeated their earlier assurances that this biopsy will be much less unpleasant than the one Dan went through when he was first diagnosed with kidney disease. Knowing Dan, I bet he’ll continue worrying about it until it happens, but hopefully at a lower level.
Wow, it’s been over a week since I’ve written here. We’ve gotten used to our new routine, and Dan continues to only need to go to the transplant and wound clinics once a week. We’ve been taking good care of two sites on his incision that need attention. One is really healing nicely, but the other is taking its sweet time with this whole healing thing. We are doing everything that the nurse at the wound clinic has instructed us to do. She keeps us fairly well stocked with supplies, but occasionally I’ll need to track down something or other that we’ve gotten too low on — and it needs to be used that same day. Just so you know, tracking down specialized medical supplies (like those little plastic cups you take your pills with, and an anti-microbial gel called “Silvasorb” that must have real silver in it – it’s expensive!) is a little like going on a scavenger hunt. One that closes at 5pm on weekdays and is closed on the weekends. Nonetheless, I’ve managed to find what was needed.
Lab numbers are still good, and the doctors seem happy. I have to say that going to the clinic one time a week is much preferred over the ‘three times a week’ routine.
We spent the morning doing fun stuff, but we didn’t have a moment to spare until lunch time. First, we attended the Easter egg hunt at West Gresham Elementary School. It’s put on by the staff at the daycare where Charlie spent his first five years. I’ve never seen so many people there — and in spite of the rain! We had to be there at 9:00am sharp, because once they “release the hounds”, er, kids, the actual “hunting” part only lasts for about five minutes. I’ve got video – it’s like a horde of ants descending on a field of candy. Very fun though, and we’re thankful to the owners and staff of the daycare for all of the work they put into this each year. This is apparently the 60th year of this particular Easter egg hunt, and going strong!
Right after the eggs were gathered, we sped over to the baseball field for opening day festivities for Little League. It had stopped raining but was extremely cold. Pictures were taken and then the kids ate pancakes, and finally it was time to get lined up for team introductions. They took the kids out, lined them up by team, and left them standing in the outfield for what seemed like four hours while the board of directors were introduced and then some other announcements were made but we couldn’t hear them because they were using speakers from a kids’ karaoke set (or so it seemed). By the time they finally led the kids off the field, I was half frozen, Dan was in the car, and Charlie just wanted to go home. Yay, team! Our first game is this Thursday and we’re really hoping for better weather.
Oh, I forgot to mention that during this whole time I was just itching to get in line at the Apple store for a new iPad (especially at 9am when I could just imagine the folks who were in line and the doors opening up). Dan thinks that its ridiculous for someone to wait in line to buy anything, but somehow that iPad has been calling my name ever since Apple announced it. And ordering it for delivery sometime in the far future (April 12) seems so anti-climactic and blah.
Today’s lab and clinic was more encouraging than the last few. We stopped by the wound clinic and learned how to care for Dan’s incision site (details of which I won’t go into except to say it just requires more attention than it did last week). Monday, the surgeon thought it looked superficially infected, but today the nurse at the wound clinic thought it looked pretty good. We will continue to visit the wound clinic once a week or so until things are mostly healed. I feel more confident in how to care for the site now that I’ve had actual instruction. They also provided us with specialized supplies — one item was interesting to learn about: it’s called Kaltostat and it’s a fibrous spongy material made of seaweed and helps to protect the site from infection. Dan and I couldn’t decide if it was high-tech or low-tech — maybe nature-tech. The nurse there encouraged Dan to eat lots of protein, vitamin C and zinc – all to promote healing.
Dan’s creatinine is down a bit today, which is good. It probably won’t go any lower – everyone’s levels are different because of the way individual bodies process it. The more muscular you are, the higher (generally) your natural creatinine level is — although if it gets too high then the docs will want to check you out for kidney dysfunction. (The creatinine itself is not toxic or anything: it’s just an indication of how well your kidneys are flushing it out of your body, because your body continually produces it.) Dan’s got as high as 10 pre-transplant, and it’s now below 2. The doctor told us about a professional basketball player that he knew about with a pre-transplant creatinine level that was higher than 19, so you can see how it can vary from person to person.
The doc surprised us today by announcing that Dan only needs to return to the lab and clinic once per week — and we were previously at three times per week! So that is very good progress. Dan is much relieved, as the higher creatinine levels that we saw last week (when he was dehydrated) could have been an early indication of kidney rejection. At 6-8 weeks after the transplant, Dan will go in for a kidney biopsy – this will tell the doctors if there is any sign of rejection that might not be visible in the blood tests.
Oh, and I almost forgot: the episode of gout is over. No more pain or stiffness. Don’t want to see that again anytime soon!
In other news, tonight Charlie basically told me, “I’m an inventor, mom. Why doesn’t anyone let me do experiments?” So I told him he could pick out a couple of experiments from his chemistry book and we’ll do them this weekend. He replied that he wants to make up his own experiments. I’m a bit afraid of what he might come up with – but most importantly I’m wondering if I will be able to modify the initial experiment design into something safe and easy with materials I might actually have in the house, while not upsetting yon young Edison.
Before he went to bed, he wrote a short story on a piece of paper. This is how it reads: “Once upon a time there was a mom. She had 3 childrine. Their names were: Betsy, Hanna, and Rabeka. They went out into the woods! And they stead there for the rest of their lives. The end.” I asked him if it was a good thing or a bad thing that they stayed in the woods, and he said it was good because they loved the woods. He described himself the other day as a nature-lover, and after asking me what being addicted to something means, he stated that he was addicted to nature. What an amazing young man we have – we are so proud of him. I’m so happy that he isn’t afraid to ask us anything, and he really listens to the answers and is so curious to learn. I can’t wait to see if he does turn out to be an inventor, or an engineer, or a teacher, or ?
This is a picture that he drew (by making sure he had the correct crayon for each shade) right after Dan taught him the “ROY-G-BIV” mnemonic to remember the colors of the rainbow:
Yesterday Dan had to go in to see the doctor because he had a mild fever and of more concern to his docs, he had some pain in his shoulder. I think Dan was more worried about the fever, but the docs wanted to see him in the office because they were concerned (we learned later) he may have thrown a blood clot to the lungs. The good news is that it was an episode of gout (and not anything worse). The bad news is that it was an episode of gout (and very painful). So, some medications were adjusted and Dan was sent home. This morning his shoulder was only a little painful but still didn’t have a great range of motion and is still pretty stiff. It should resolve itself in a few days.
This morning’s clinic was not as good as previous ones. Dan’s creatinine was a little higher than it was on Monday, but his weight was also down quite a bit. The combination leads his doctor to believe that Dan’s just not drinking enough water, so Dan must drink a lot more water and more interestingly, *not* stay away from salt. He has tried to avoid salt for years, ever since he was diagnosed with kidney disease, so it was just a little different for Dan to be told to go out and have a bit of salt.
Dan’s wound drainage continues to make things bothersome. His surgeon came by during clinic and examined the incision. He also did a little procedure to open it up a little to encourage the draining. I didn’t really want to watch while this was happening, but there wasn’t a whole lot else to look at! Oh well, if nothing else perhaps I am getting a little hardened to the sight of such things, which might help *if* (not *when*) Charlie ever comes running in with some huge cut on his arm. Which reminds me of a story about myself when I was middle school age and had a little injury to my finger that did bleed a bit. I ran into the house and wouldn’t show my mom because I thought if she reacted in any way to how horrible my owie was, it would make me panic. So I showed it to my dad, who took one look, wrapped it in a washcloth, and drove me to the hospital. Sooo…..back from memory lane now. Where was I?
Oh yes. The surgeon did say that there didn’t seem to be any sign of infection and the tissues look good, but informed us that in patients he’s seen with excessive drainage, he ends up in the operating room with a third to a half of them. We are to watch the wound, watch for signs of a fever (Dan’s temp seems to be fine as I write this), and keep everything nice and clean and bandaged. This afternoon they did an ultrasound. They are pleased that the fluid build-up is smaller than it was a week ago. They are also happy with the blood flow to the new kidney, and confirmed that there are no blockages that may be causing problems. Overall, we are encouraged by the results. Dan is annoyed by the draining, and a little worried about the small chance for a second surgery if he does end up with an infection. But we’ll just take things slowly, listen to the docs, and keep an eye on everything.
Last night we attended our first Little League team meeting. Charlie is now a Giant – since he’s a rookie this year, he doesn’t have the complete baseball uniform but does have a cute orange t-shirt and a Giants cap. Thankfully we have one mom who’s been with the league for seven years and volunteered to be “Team Mom”. She can direct the rest of us, who are first-timers and have no clue what is going on. We learned that instead of keeping a list of which parent is bringing snacks each week, they encourage parents to buy “scrip” at the beginning on the season, which they hand out to the players at the end of each game so they can buy their own snack at the concession stand. I’m reserving judgement until I see what’s for sale, but I have an image of kids buying sodas and candy bars instead of the more healthy snacks that the parents brought to the soccer games last fall. The parents are also expected to work three shifts at the concession stand. Good thing I’m a cash-register guru. I volunteered to be the parent who organizes the kids into batting order and helps get each one ready to bat as their turn comes up. I have to pay $2.00 for a background check since I’ll be an official league volunteer. Which makes me ask myself: what kind of background check costs $2.00?? When it comes to checking someone’s criminal history, I’d rather pay for the deluxe search rather than the bargain cursory lookup. Okay, okay — I’m sure it’s fine. Remember, I am a little league newbie here, so what do I know?
And I have to mention that I am over here groaning about Obama’s speech today about the healthcare bill. I am completely fed up with the politicking and spin and playing to the camera, by EVERYONE (not just the President). It might surprise you, but there are at least a few insurance companies (like the non-profit that I work for) that actually want to *improve* things. *sigh*
Today things are feeling more like “normal”, for everyone. Yesterday Dan told me that he doesn’t feel so much a “patient” anymore, but is feeling more like his old (but much improved) self. For me, today at work seemed like a regular day and I didn’t feel like I had a to-do list longer than Santa’s. For Charlie, he is just happy that he’s lost his latest wiggly tooth and he doesn’t have to worry about it affecting his eating for the time being (the next tooth has already started its wiggly dance but isn’t annoying yet).
Yesterday, Dan had a great clinic. His staples were removed (surprisingly painless), he was told that he only has to go to clinics twice a week now, and his creatinine continues its descent. It felt like we’d reached another kind of milestone, so we celebrated by getting Dan his much-deserved chocolate milkshake. Way to go, Dan! His doctors are still watching the incision site, which continues to drain a bit, but it should resolve itself with time. Hmm, there should be a rule against putting “milkshake” and “drain” in the same paragraph. Sorry!
Hopefully Charlie will continue to get used to the new-ish routine. He’s been prone to whining lately, and told Dan yesterday that he can tell that good news is not on the way when I start a sentence with “I”ll tell you what…”. Personally, I think that you can’t really tell if it’s good or bad news when I say that. Half the time I find myself negotiating with him without even meaning to. Kids would make great attorneys. He has Spring Break next week and his daycare has planned a slate of fun activities and field trips that he’s been looking forward to. Oh, and T-ball will be starting soon. Charlie’s going to be on the “Giants” team, and we’re attending the first team meeting this week. I just want a photo of him in that cute uniform!
By my reckoning, Dan is on the 17th day with his new kidney. He reached a milestone yesterday: because he’s not taking mega-doses of Prednisone any longer, he can go out in public without a mask! He still carries one in case we encounter coughers or sneezers, but all in all it’s easier for him now. He will continue to taper down on the Prednisone and I believe he’ll be done with it by the end of this week. He still needs to take his anti-rejection meds twice a day, and his thrice-weekly lab results will indicate if the dosage is right. It’s amazing, really, the small mountain of pills that he’s taking. He’s quite the expert on taking them all at once.
Some of the things on Dan’s wishlist: being able to take a bath, drinking a big chocolate milkshake, and driving to the coast.
We’ve been to a few more clinics since the last post. Dan’s creatinine is now below 2, which is very good. His doctors are closely watching his wound area – it’s not infected but continues to drain. It’s good that it’s draining and there’s no fluid collecting inside, but it’s bothersome to deal with. The docs even ordered an ultrasound on Friday (which went well) to make sure the kidney and wound area look okay and they don’t seem overly concerned — but in case there’s an infection building in there somewhere, they are very watchful and want to know right away if Dan’s temperature rises over 100 or if he gets the chills or feels poorly at all. The hour-long ultrasound made for a very long clinic visit. We were there from 7:30am until almost 1pm.
Thank goodness for the weekends, when we can all catch up on some sleep, prepare a few dinners for the coming week, and clean up the house. And thank goodness for my mom, who let Charlie spend the night with her on Friday to give us a few hours of downtime. Charlie continues to do very well with our new schedule, but I’m not able to spend as much time as I’d like with him on his homework. I know, homework in kindergarten! All I know is that he is very ready for first grade so I am not overly concerned about him being late with a few assignments.
Happy Pi Day (3/14) — which reminds me that this year Charlie’s birthday is on 10/10/10, which is way cool.