This is a very special Thanksgiving for us because it is the one year birthday of Dale’s kidney. I can’t believe it has been a year since we packed up and headed to Dallas for nearly a month. We picked up the apartment key that night at Baylor and “moved” in. The next morning we reported to admitting before dawn and the entire family, friends, pastor, and more, got comfortable in the waiting room as Dale and his sister started the process of getting ready for surgery. It was a long and nerve-racking day but everything went fine. We had a few glitches after the surgery with Dale going into “acute” rejection and needing to be dialyzed one time before things started settling down.
To try to thank everyone for everything that was done for us is overwhelming. We were LOVED. Folks I work with collected money, put up with me being a little crazier than usual, friends checked on us, checked on our kids, sent things they thought we would need, gave money so that Sondra wouldn’t miss salary, prayed for us, sent cards, brought our kids to visit us (and cooked with them – thanks Beej!), visited us, and I’m sure I am forgetting someone or something.
The difference in Dale and our lives as a family in the last year is so great. Dale is probably 50 pounds heavier, the transplant medications no longer bother him, he has not been diabetic and is able to eat almost anything he wants. He only has to go the transplant center every six weeks now. He laughs and picks at people again and if you know him at all, you know that is a sure sign that he is himself. He will always have balance issues but he is happy, is cooking, and goes to lunch with our busy son a few times a week. He keeps us organized, and keeps us going.
To all of you that held us up and pulled us through, thank you, we love you and you will never know just how much every little thing meant or how each kindness pulled us one more inch up the hill we had to climb.
It has been one of those days. Dale’s appointment at the Transplant Institute was today so we were leaving the house a little before six a.m. As we went to get into the car a man stood up from between two of our vehicles where he had been crouched. He was holding a drawstring bag and said he was looking for his cat. He described the cat as white calico? We told him it might have gone to the field behind the houses and he could get there by walking to the end of the street. As he walked off I called the police department and they said they would check on it. We received two phone calls from them in the next hour and a half as we were on our way to Dallas. The first to confirm his description as they were talking to someone in the area we had described to them. The second call was to thank us. He had been going along stealing from cars in the driveways!
We rarely lock our cars (not that we have anything in them that anyone would want) but even so, we will now.
The traffic was light for a change so we were early which turned out to be a good thing. DTI has been at a temporary location and we went to the office we had been going to, went up to the second floor, down the hall, opened the door and….darkness. No sign or anything. We knew where they were moving to and luckily it was nearby so we still made it on time but a little notice would have been nice.
We took my MacBook with us as it has been having issues and had been repaired once only to be having the same problem when I got it home. Unforunately I had not been paying attention to the news about the new iPhone which came out TODAY! I never imagined what a big deal it ws until we drove past the little Apple store with the line going out the door, past the security guard, around the corner, and TWO BLOCKS down the street! Uh yes, we drove on by.
Dale’s creatinine was up just a bit and after the last visit the doc had him do a 24 hour urine collection and get blood drawn here in Paris. The lab work was done at PRMC and the results were given to the Nephrologist here. The orders specifically said to fact the results to the doc at DTI and had the fax number one them. They did not have the results today (The tests were done over two weeks ago!) and the Nephrologist office here is closed after noon on Friday. They had called them this morning while we were there – the phone number had been written in pencil on his lab results from today from where the doc called right before we got today’s results. When I called at 2:30 P.M. They still did not have them. I called the hospital and got them to fax the results which were not conclusive. He has to repeat the test but this time we are skipping the local and taking it directly to DTI. I am not griping about the lab here as much as I am about the Nephrologist who should know that in a post-transplant patient 2 weeks is just a tad long to wait for results on a crucial test.
Now, I’m pretty sure the refrigerator is dying.
Addendum – the refrigerator IS dying. We went and bought a new one – got it cheap – it has a dent, don’t care. It has a bottom freezer and that was my one requirement. We finished the evening off with the Paris Municipal Band concert and then came home and transferred food to the freezer in the garage til the new one comes.
I’m going to bed before something else happens!
Dale went for an extra check up today because his blood work came back wonky last time. His creatinine was up from 1.1 to 1.4 and his white blood cell count was up. Those things could indicate an infection, a need for meds to be adjusted, a need to drink more water. They were about the same this time – no worse. They want him to come back in 2 weeks and do another glofil test and they adjusted the meds and both were medicines that could create this effect. Soooo…he’s fine though not happy about doing the glofil again.
We got back just after lunch and I went to work though I wondered for a while if we were going to have to pull over in Commerce and wait out the storm – it was raining so hard we couldn’t see and it lasted almost to Paris.
The school year is almost over. We went to a cookout for the debate team last night and the kids got to burn their files. There are six seniors moving on this year and they have spent a lot of time together and they have spent a lot of time with Kristy so it was kind of emotional. We left before about 8:30 and left the kids to spend time with each other and Kristy. I can’t express how grateful I am for all the time Kristy put in with these kids and especially mine.
Tonight we go back out there for a cookout for the AP US History class that my daughter has been in with Dennis as her teacher. They have both obviously had a lot to do with my kids education and growing up.
Dale had his regular appointment today as well as his 6 month glofil test. His lab work was fine except his white count was low. They are going to have us go to a local lab and have that checked next week as a cold could do that. Another culprit could be one of his medications and if that turns out to be the problem they will lower the dosage.
We don’t have the results on the glofil test but it basically entails drinking some iodine in diet coke and then they have you drink a couple of liters of water (or at least it seems like it). They inject a little radioactive isotope under the skin and then you can only use the facilities when they tell you. You have to drink three times and they draw blood three times.
The good news is they have switched his visits from every two to every three weeks! Yay! For his sake and the sake of our bank account with current gas prices!
It all seemed to go fine but we didn’t get out of there til 3:00 so it was after 5:00 when we finally got home. We are now in recliners in front of the tv. Both kids are at regionals and my plan for the night is to do a little laundry, watch tv and surf the internet. I’d like to stay awake to see Numbers but we’ve been up since 5:00 this morning so I make no promises!
I have been really busy at work lately. I had one day where I was able to spend a large chunk of time on some spreadsheets, but I spend more time on interruptions lately than anything else. I have a hard time recapturing a train of thought that’s been derailed – I need a better system. I seem to spend a lot of time starting things and even more trying to get back to them to get them finished. It’s making me crazy and the piles on my desk just keep getting taller.
Dale had his appointment at the transplant clinic today. He drove himself and went to the Whole Foods Market before he came home. He is doing great. The took him off two medications and lowered another one. He will go back in two weeks and if all is still well they will switch him to every four weeks. All good news.
We are going to a debate meet tomorrow. The kids on the debate team that qualified for Nationals (including my son) made the front page of the paper. I bought multiple copies and showed them to everyone I saw. I’m proud of him, he has worked very hard.
Friday Dale had a great report – his labs looked fine and the new medicine is wonderful – no stomach cramps! He goes back next week just for labs, will see the doc the week after and then he will go on an every other week schedule so he has graduated to a new level!
We managed to get back from Dallas by lunch and I went back to work for the afternoon. We both felt so good about the day and it had been a long time of worrying and not feeling good at all!
It has been a busy weekend so far and as usual I am trying to catch up with laundry in between working the tab room at my son’s debate meet, getting ready for but then not actually attending the UIL Computer Apps event because my only student got the flu, and attending the concert for the band clinic in Mt Pleasant.
I didn’t have to do as much in the tab room as I have in the past – they have a new helper learning the ropes since I won’t have a debater there next year. I mainly kept paper organized. I will more than likely still help next year just because it is fun!
Dale just threw some more wood on the fire and I am heading for my book and blanket. Stay warm everyone!
I have waited to post to see how this new medicine was going to work and so far it is wonderful. The labs Friday will tell us if it is doing the job as far as anti-rejection but there have been NO stomach cramps in two days. Dale has been staying busy, cooking and eating supper and sleeping all night. What a difference not being in constant pain makes for a person!
Creatinine down to 1.3, potassium – good, sugar – good, calcium and vitamin D – coming up. All looking good so we are to just keep doing what we are doing (except Dale needs to drink more!)
We go back next Friday but hopefully there won’t be any changes in meds between now and then. There are a couple of tests that don’t come back right away but the main ones are all looking good.
It is chilly here and we have the fireplace insert working overtime but it is nothing compared to where I grew up. I ran across a news/weather flash the other day about the New Years winter storm in Southeast Michigan and had to go looking for pictures of the 16 inch snowfall.
I remember the quiet muffled peaceful atmosphere when winter snow would cover everything – softening the lines and slowing everyone and everything down.
We lived with Lake St. Clair in our front yard and a canal similar to this one in our back yard. We spent the summers in the water and the winters on the ice. In the winter it was often much quicker to get from one place to another by cutting across the ice.
I remember the fun when we were kids. School closings were very infrequent – you might be late but you got there. The salt trucks would be out on the main roads but those of us who lived on little side roads had to work together to dig ourselves out. As an adult I remember what a lot of work and trouble it was to deal with the roads, the cars, and the slushy muddy mess when it all melted.
These images were from the Detroit Free Press and the Port Huron Press Herald.
Stay warm and safe everyone!
We have a doctor appointment for labs tomorrow morning (yes I had hoped to be back at work tomorrow but it will have to wait til Friday) and I will post about our results tomorrow evening. We know that Dale’s vitamin D and calcium levels are low and they are going to be addressing that. If you are a transplant patient you are supposed to protect yourself from exposure to the sun which is one source of vitamin D and because your potassium levels can be affected but the anti-rejection drugs you are restricted in what you can eat. Milk is high in in vitamin D (fortified) but also high in potassium.
The medications also can cause problems with your bones so Calcium and Vitamin D are important. Dale feels a little like a chemistry experiment gone awry but it is slowly getting better.
See you all very soon!
In kidney transplant you have several milestones. Dale reached his first one today – the one month mark. The next one is the three month, then 6 month, and from then on it is measured in years. His labs still are not perfect but they are better every time. His creatinine was 1.4 and his potassium was 4.7 (they shoot for less than one on creatinine and 4 on potassium) so we are looking good.
The bad part of the day was having to be there at 7:00 A.M. for the glofil which entails drinking 10 glasses of water in 45 minutes and blood work and then repeats (in all he drank 17 glasses) which made him sick. The sheet of instructions they handed us when we got there said you need to start a few days before the test making sure you are well hydrated – unfortunately that is a piece of information we should have had several days ago. The problem is they are spread out between several buildings because of major remodeling and sometimes there is a communication issue.
He has to take this test every milestone so he will have plenty of time to practice but you can bet your gallon jug that he will start drinking a LOT the days before the tests!
There were several people there who only had to drink 5 glasses to start. We are going to aim for that!
Image by Darkpatator
We have caroled, spent time with friends, were late to candlelight service, and are having a peaceful day. Here are some thoughts for today.
I Have No Gift To Bring BaRumPumPumPum
Dale’s sister gave him the ultimate gift
Let Every Heart Prepare Him Room
The support and love we have gotten from friends and family has been overwhelming. The love of Jesus has shone through all these precious people who definitely have made room in their hearts for Him and us!
I’ll Be Home For Christmas
And we ARE!
The First Noel
People have many firsts in their lives but not everyone has a first Christmas with a new kidney!
Silent Night, Holy Night
Our Christmas Eve was calm and bright. Both of our children were here and all of us under one roof – safe, dry, and warm. The Christmas tree lit and the fireplace glowing, food to eat – no huge excitement or loud parties. Just all of us here – at home.
O Come All Ye Faithful, Joyful and Triumphant!
We have been faithful and we have come so far from Thanksgiving to Christmas. This one could have also been Over The river and Through The Woods LOL
Fall On Your Knees, O Hear The Angel Voices!
So many prayers have been answered. We have not done it perfectly (whatever that means) and it has been harder than Dale ever thought. It has been humbling and maybe that was part of the message. We have survived and have a period of healing to go through and adjustments to make but we are so grateful to be here.
The World In Solemn Stillness Lay To Hear The Angels Sing
What a gift a night of sleep in your own home can be…
Santa Claus Is Coming To Town
The kids are playing Guitar Hero in the other room and we are here with them – that is our Christmas present (that and trying to see how many songs I know from the video game). It’s funny sitting here and listening to ZZ Tops’ “La Grange” and FogHats’ “Slowride” in the other room.
Silver Bells, Silver Bells, It’s Christmas Time In The City
And we are NOT there – nuff said.
Have Yourself A Merry Little Christmas
I hope that all of our friends and family are having a Merry Christmas and that the love and peace of Christ surrounds you and yours this day.
thanks BJ for the ornament 
We are back at the Dallas Transplant Institute waiting for Dale’s labs. We enjoyed the trip home and are hoping that we are going back today. It will be great to be home even if it means driving over here a few times a week.
We will have a lot of packing to do – it’s amazing what you can accumulate in a very short time. We carried stuff with us when we went the other day but there is still a lot at the apartment.
They took half his staples out – every other one – including one that was driving him crazy and they are going to start tapering the prednisone so he is happy about that. He also got his pneumonia vaccine.
!!!!!!!!!!!!!!!
We are home! Dale’s creatinine was 1.9 and his potassium was down a bit too. We don’t have to be back til Thursday (and that appointment is at 7:00 – in the MORNING!)
We’re tired and the house is a wreck since we basically just threw everything in the house. It is amazing how much you can accumulate in a very short time. I’m not going to worry about the house tonight – I’m just going to crash and burn!
Just for the night – we aren’t really telling anyone yet because he doesn’t need any visitors yet. He just had to get out of that apartment.
His creatinine was 2.1 today and his potassium was down a bit. We are going to have to watch the potassium for awhile because some of the meds will mess with the potassium so we have to try to not add to the problem with diet. Of course the things that are high in potassium are things like milk, vegetables, beans, nuts – the very things he was hoping to get to eat after transplant. It will get better as they back off the meds but for the next few weeks, no fun food.
If his labs are good again Friday the doc said he could skip Monday so we could enjoy Christmas without a doctor appointment in the middle of it. I am hoping for warm weather – Dale just wants to sit on his back porch. We are so ready to be home.
At least it was sunny and warm today. We got out for awhile and even broke down and bought Dale a cell phone. We figure he is going to need to be able to reach us if he needs to.
We are hoping to sneak home for Christmas even if it means going for labs Christmas eve morning and then heading home and being back here Christmas day night. It would at least be one night at home and with the kids. Hopefully we will be home soon. Even if it means driving over here two days a week I think we would do it.
Dale is feeling better today so we will see what the numbers are tomorrow. We are heading to the store to get something for supper and then maybe watch a movie if we don’t go stir crazy!!!
Happy Birthday Kath! Happy Birthday yesterday to Diana and tomorrow Mark! Last week it was Skip and this Friday Kinsey!
When Dale went for his labs this morning we had a talk with our doc. So far the biggest problems Dale has had with this transplant have had to do with medication and it seems to us that they are very aggressive and whenever they make an aggressive change it sets us back. We would like them to be a little more careful about those changes. The doc today said that evidently his system is very sensitive to the medications so I think they are getting the idea.
His creatinine was down to 2.6 but his potassium was way too high so they gave him some medicine for that. Some of the numbers are looking very good but others are a little slow. They are telling us that it is just his body getting used to this new kidney and that it will be better. The high prograf levels from the day before yesterday still have him feeling bad so we didn’t do much today. Plus it is pretty cold! We are really ready to come home. Hopefully we can come for a few days at Christmas. I think it would do us both a lot of good that and his potassium coming down so he could eat a few more things!
We are early and waiting for lab results which won’t be posted for an hour and a half or so. We decided to have breakfast while we wait.
I forgot to mention in my last post that BJ and my daughter made Fettucine Marsala and chicken with Marinara Sauce and brought some to us. Evidently they cooked two boxes of fettucine not realizing how much it would make. Everyone ended up with some. It was delicious and my kitchen has been cleaned! They brought me Latte from Paris Coffee too – there is NOTHING here that compares! I miss it and appreciate it so much when they bring it even if I have to warm it up.
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Got the labs back. His creatinine was down a bit but his Prograf level was up (the anti-rejection drug that they increased the other day!) Now we have to completely lay off the prograf until after his labs in the morning. Sheesh.
My son is here and we have already shopped and we are back at the coffee shop. He and Dale are reading the paper while I post this. I’ll post again after his labs tomorrow. Hello to everyone and I hope you are all staying warm!
Well we are playing with medicine again. The other day they put Dale on a 100 mg diuretic. He lost 10 pounds in two days. His creatinine level was up a little again so we are on a roller coaster ride again. They stopped the diuretic and upped the prograf which is anti-rejection.
We think they should have put him on less of a dose of diuretic to begin with and maybe we wouldn’t have gotten in this shape. We keep hoping they know what they are doing but a lot of it seems like a guessing game as they tweak the meds.
They did another ultrasound and everything looked fine but they don’t want him to wait til Monday to do labs so we will go over to Baylor Sunday and they will check his labs then and see how we are doing.
The ultrasound and extra labs are because he had the early rejection and they are being extra careful but it is worrisome and spending extra time doing medical stuff is not Dale’s idea of fun.
BJ and our daughter came to visit today and that helped a lot. We made a trip to the Whole Foods Market just because we could wander around there for hours. I bought some orange cauliflower to cook tomorrow and I have chicken breasts marinating. We are bored and mostly just want to come home and we know the best way to get there is to get well. I’m sure the sentence about chicken will net me some interesting spam – where would be on the internet without spam! I never thought about the origin of calling all the junk spam – guess I will have to research it. It makes perfect sense though – all fat, sodium, and mystery “meat” – absolutely no nutritional value – yep, that’s spam.
I know this is a pretty random post but that is the kind of mood I am in. I made a visitor’s pass to hang in BJs car at the apartment so he wouldn’t get towed because the office is closed on the weekend. I used a bobby pin and a surgical mask. Jessica thought it was funny and took a picture.
you do what you gotta do! I’ll post again after we get the next labs!
Dale is not much for computers but since he started reading what I write about all this, we go to the coffee shop to update the blog and check email and before I even get to it he is asking what the comments are for the day or who we have email from.
I always make sure I show him email from Earl – a good laugh is wonderful medicine and you send some of the best jokes! A good laugh also helps when a person is on a steroid roller coaster!
We have told the kids to not even try to come this weekend if the weather looks bad and that will make for a very long weekend but we’d rather have that than worry about them on the road. I hear that our Christmas decorations are going up and that things like Chicken and Rice Casserole are being cooked (thanks to help from BJ) – I can’t wait to see everything when we get home. Thanks son for filling in for us and going to your sister’s band concert!
Dale’s labs showed the potassium was back down a bit. we went to the Farmers Market today just for something to do. It was pretty chilly but the sun is out and it seems warmer.
