You are all making us cry with the comments! Thanks for all the support and BJ thanks for hauling my kids around!
Dale’s creatinine was down to 3.4 today so it is coming on down but his potassium was up kind of high. It was explained to us that the body is going through a lot dealing with all the new medicines and the kidney trying to get woke up and working right and that all these things should balance out. Dale asked how long before they start backing down on some of the meds and the doc said the first milestones would be at one month and three months so if everything is stilling going well at one month then he should be able to take less meds and that should help him feel better. He is a walking chemical plant right now – he says he should rattle when he walks!
He takes 3 different anti-rejecton, two antibiotic, sodium bicarb, a diuretic, a pepcid (probably to keep his stomach from freaking out over all the other stuff!), an after meals pill, 2 blood pressure, and a few more I can’t even remember. One of the anti-rejection drugs he takes is 3 capsules 4 times a day!
He has to go have labs drawn again in the morning to check that potassium. If it isn’t one thing right now it’s another!
It is brrr cold now too. I guess winter held off as long as it could. I will be happy as long as there is no ice. No one in Dallas will be safe if I have to drive on ice here. We are going to go back to the apartment in a few moments and stay warm and dry!
I talked him into buying a cardigan sweater the other day – he has always worn pullovers. He liked it so much we went back and got him two more. He looks a little like an absent-minded professor in it.
I came down to the coffee shop to post this and a couple was in here that haad to leave and go to the emergency room. He had a transplant 2 years ago and they were sitting there and he started to have a nosebleed. I told her how to get to emergency (just a few moments from here) since he didn’t want her to call paramedics. Husbands – sheesh.
Now for the post I had written!
We are getting braver. We pick a direction and drive and just make sure we can keep some landmarks in view. We ventured downtown today and made our way around to an Albertson’s grocery store. We managed to find our way home just fine.
My brother just found out he is diabetic. When I get internet access again I will be sending him information and I know his wife will be sending me some too. Dale has been able to keep his sugar down a bit by walking. We get out of this apartment every chance we get and walk. He may be moving slow but he is moving and it helps.
I have discovered the joys of steamed veggies and I’m getting ready to steam a bunch and cook some brown rice and pork loin to make some stir fry.
I want to take a moment to thank our kids. I can’t imagine being able to do this if they weren’t the people they are. I know they want us home but they have managed to make it to school and work. My daughter got first chair at all-region and my son is keeping up in debate. He has gotten multiple awards at the last two meets. For them to do all this with us gone is awesome and I want them to know how much we appreciate them for hanging in there.
We love and miss you guys and we need you to know that we appreciate you and know how hard this is. Dad and I will be home as soon as we can!
If you know me you know it is driving me crazy to not have internet but I’ll live. We had Dale’s first appointment at DTI this morning. His creatinine was down to 4.1 so we did the happy kidney dance! So far so good! We are wishing the weather was warmer but no complaints – at least it isn’t icy!
A little bird told us that if he is doing ok and feels up to it we could go home for a few days at Christmas so we are hopeful. Right now his appointments are Monday, Wednesday, and Friday. We are learning our way around so we get out of the apartment and stave off cabin fever.
I’ll post again when I can – we miss everyone and can’t wait to get home to stay.
My son got here last night (thanks to his debate coach and the two fellow debaters that came along to keep her company!) and BJ brought my daughter today. It was fun and good to have them all here. I miss the kids. We went out for lunch adn then all of us went to the Whole Foods Store. I felt bad because our grocery trip was paid for by someone and that store is pretty expensive. Dale can wander for hours through the produce and cheese sections. I got some good pasta sauce and steamed some broccoli and made a pasta dish for later. He got some grapes and some apple and blueberry breakfast sausage to try.
So far he hasn’t had to give himself insulin since we left the hospital so I hope that’s a good sign. It isn’t going low – just not high enough to need insulin.
We are sitting at Cafe Brazil right now so I can use the internet. It is so crazy – yesterday it was 80 degrees and today it is 40 and misting rain. It is foggy enough that we can’t see the top of the buildings downtown.
Tomorrow is Dale’s first appointment at DTI and we will get labs drawn and see if we are still doing well with the creatinine. He is feeling pretty good and got a good shower for the first time this morning. He is having to sleep in the recliner – he isn’t used to laying flat and his incision needs to heel a bit more before he will be comfortable in bed all night.
Dale was dressed and sitting in the chair waiting at 6:00 this morning and that was NOT a good thing. We had to wait for rounds, wait for the med sheet to be updated, and wait for the nephrologist to look him and the meds over and pass judgement. It was after twelve by the time we got out and everyone was so nice but Dale was tired and not too happy that he had to wait so long. He is now free til Monday morning when we have to be at DTI (Dallas Transplant Institute) at 8:00 AM.
That will give us time to visit with the kids and get his medicine lined up for the next few days. He swallows a handful of pills twice a day and a few in between. We have the large economy size pill organizer and we will get it filled tomorrow.
First day out we came back to the apartment and unpacked and ate lunch. Dale got a nap and then we went to get his prescriptions filled and stopped by the Whole Foods Market for some healthy goodies.
Another nap, time to check sugar, take evening pills, eat, and then we will go over to the coffee shop next door where we can sit out a a picnic table and I will have internet access so I can publish this!
We ended up in the Baylor lobby online waiting for our debating son to get here instead of the coffee shop but this will work too!
Dale is walking the hall as I write this. They haven’t even brought breakfast yet and he is already packed and ready to get out of here! We have a few questions to ask before they turn us loose as far as medicine and transplant clinic appointments and then we will be out of here.
My son’s debate coach is bringing him to us after the meet today and he will spend the night. BJ is bringing my daughter tomorrow and they will spend the day and then they will all go home together so we will have a little family reunion. I won’t have internet at the apartment – I tried to go through AT&T wifi but there isn’t a hotspot close enough believe it or not so I will have to write and then zip over to the coffee shop down the block to actually publish and check email so I may not be posting quite as often but I may post several at a time.
Creatinine is down to 5.1 so while we would like it to move a little quicker at least it IS moving in the right direction so we shall be out of here as soon as the nephrologist checks him out!
As long as everything looks good again tomorrow we get to go to Twice Blessed House. The dietition came and gave us a lot of information on diet because for the time being with the high doses of steroids on board he is diabetic. The diet is so much better than the renal diet in terms of him being able to add back foods he likes that he is feeling pretty good about it. He has no problem sticking himself which is good because I’m not sure I could do that. The things he is going to get to eat that he hasn’t been allowed for four years are sweet potatoes, beans, nuts, cheese, and milk. He also has had to be careful about eating vegetables that are high in potassium (which is most of them) so now he can have tomatoes, spinach, broccoli, and potatoes!
We went for a walk and sat outside for a few minutes. It is such a pretty day!
I’m sitting here looking at Dale who is wearing pants for the first time in a while! That sounds kind of funny doesn’t it? His creatinine was down to 5.6 today!!!! We are getting to go for a walk off the floor after the docs come through so he will get some fresh air. It is supposed to be a whopping 80 degrees here in Dallas today so we will make a little trip outside.
I’ll try to post later but wanted to share this good news. For the uninitiated we want the creatinine to end up as close to 1 as we can get so every point is progress.
This is a time out from the day to day details of Dale’s medical situation and some thoughts about what happens when you donate a kidney. I know that Dale’s sister has been so upset about the possible rejection and problems Dale has been having. All of his sisters have worried about him and have been checking on him but Sondra has been especially upset.
I know she would have been upset even if she had not been the donor but I can only imagine how this changes the depth of a person’s feelings. To offer an actual physical part of yourself to another human being to heal them and then to have it not be working has made her wonder if her gift wasn’t good enough. I know you are reading this blog Sondra so I want you to pay attention!
Matthew 25 tells us:
34″Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. 35For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, 36I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’37″Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? 38When did we see you a stranger and invite you in, or needing clothes and clothe you? 39When did we see you sick or in prison and go to visit you?’
40″The King will reply, ‘I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.’
Of course it matters that the kidney should work and that life should be better for Dale but no matter what happens he knows that you did this wonderful thing for him.
1 John “This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers.”
We love you – Jesus loves you , and you showed your love. Never forget this. Dale won’t.
The ultrasound looked the same or better than the last one so we are hoping that the creatinine level is down in the morning. If it isn’t they will do the angiogram because evidently sometimes there are blood flow issues that do not show up on an ultrasound. We won’t know til they get the labs in the morning but we will start pestering as soon as we are up and around for them to check!
Dale and the night nurse both encouraged me to go back to the apartment to sleep last night so I got a good night’s sleep and caught up on some laundry. When I got to the room this morning Dale had already been up walking by himself.
Dale’s creatinine level actually went up just a little today so we are still hoping that the trend will turn around. They are still planning on doing the angiogram if it doesn’t come down by tomorrow.
I did some research this morning on Kidney transplant rejection. Here is a quote:
* Rejection – Rejection occurs when the body recognizes the transplanted kidney as not belonging, and tries to destroy it. There are different types of rejection. Most rejections can be treated and reversed. During a rejection, it may be necessary to do a kidney biopsy to identify the type of rejection, so the proper treatment can be started.
Rejection can occur at any time, but the greatest risk of rejection occurs within the first three months after transplant. During these months, higher doses of immunosuppressive medications will be given to prevent rejection, and frequent clinic visits will be required. Occasionally rejection occurs years after transplant, so it is very important that clinic appointments and lab work continue.
This is from http://www.hcmc.org/Depts/transplant/recipient.htm
The docs were here for rounds just now and so it would seem that we are looking at this being either a rejection issue or a blood flow issue. They are going to do another ultrasound and if there is a change in the signal from the last one they will go ahead and do the angiogram today. If not they will wait and see if his labs look better tomorrow and if they do’t they will do the angiogram then. The dye they use in the angiogram is toxic to the kidney so they don’t do that unless they have ruled out anything else.
We got rid of the catheter today so one less hose to drag around. I just hope they don’t wait hours to take him for the ultrasound. since there is a possibility that they will be doing angiogram too they won’t want him to eat til after. When your day consists of doctor’s rounds, walking around the nurses station, and watching tv – meals become pretty important and this patient gets very grouchy when he can’t have one!
I also want to encourage anyone who knows someone who needs a kidney to seriously consider getting tested to donate. Dale’s sister is home and already back at work and doing fine. I am including a copy of a donor card you can download and print. new_dcard.pdf
It is an unbelievable gift.
Not much to tell – Dale slept well last night. His sugar was close to normal today and he is feeling pretty good except his side is tender where they took the biopsy. We are waiting to hear the results but at least they brought him breakfast this morning. The doctor seemed encouraged because of the urine output.
We met a nurse over here who lives one street away from us and also works at PRMC North. A friend there told her about us being here and it turns out she walks her dog on our street and has spoken to Dale before. She has come by to visit several times and was going back to Paris this morning so came by and left me her phone number in case I needed her to bring us anything. People have been so kind.
Okay here is the lowdown. The biopsy did show some rejection so they are upping his steroids. They seem to think that will jumpstart it so he will be Macho man on steroids for a few days and it will drive his sugar up but hopefully the creatinine will come down and the naughty little kidney will start playing nice!
Thank you to all who are sending prayers and good wishes! We appreciate it more than you will ever know!
We had a good night – got sleep. It’s amazing what sleep does to your attitude! We are waiting for them to tell us when they will be taking him for biopsy and he is kind of cranky because they won’t let him have anything to eat.
These posts are kind of fading into each other so I hope I haven’t already explained this but there is a little bit you need to know about rejection. There is acute rejection and chronic rejection. Chronic rejection is what happens more often in long term transplant where you gradually lose the organ. Acute usually happens several days after the transplant and if caught quickly can often be dealt with via medication. Today we find out if we are in acute and what they need to do to fix the problem.
All this was complicated by the fact that he was carrying so much liquid. 8 kilos is like him carrying around an extra 17 and 1/2 pounds or a couple of gallons. This made it hard for him to breath, hard on his heart, he was swollen, and the toxins were building up in his system. The main reason this happened is because the beds at Baylor weigh you and his was never callibrated. He has been saying he had too much fluid. The nephrologist talked to the floor supervisor about it Wednesday, and last night we finally got them to bring in a regular scale and he showed that it was 11 kilos off.
They try to wait because dializing you is kind of like kicking that kidney when it’s down but it had to be done. They just told us the biopsy is at three and if it doesn’t show them anything then they will do an angiogram tomorrow morning. They finally let him eat so he is happier.
Sooooo we are still in a holding pattern. The doc is encouraged that the kidney is making urine (sorry for being disgusting but in kidney transplant everybody gets excited if the patient can pee!) so he is just hoping that the kidney is “stunned” and will start filtering like it should.
They dialyzed Dale and he weighed 92 kilos which is 8 more kilos than he has ever weighed so it’s no wonder he couldn’t breath. He is feeling so much better now, except mad as a wet hen at the doc because he kept saying for two days that he had too much fluid on him. 8 kilos is a lot of fluid weight to be carrying. He can breath and wants to go for a walk in a few moments so I know he is much better.
Okay, stopped for a short commercial break. We went for a stroll all the way around the nurses station and then came back to the room and got cleaned up and got fresh jammies. Maybe we will get to sleep tonight!
I stayed here at the hospital last night and I’m so glad I did. Dale was up most of the night – every hour or so his blood sugar would drop and they would have to give him dextrose. They say this is from the medicine they gave him yesterday morning to counteract high blood sugars he could have because of the prednisone. It takes about 24 hours for that to get out of your system and we are nearing that mark so maybe it will get better.
They are giving him dextrose which is basically sugar water and they are giving him a diuretic to help him keep making urine, He is making urine but still feels miserable like he is carrying too much fluid.
Basically it looks like the kidney is producing urine – it just isn’t filtering. The creatinine was up again but just by a little so there is some hope that maybe this is turing around.
In the meantime he has swelling and that is giving him pain. They can only stick fingers on one hand because they still preserve the fistula arm in case dialysis is needed again so his fingertips are sore – thank goodness he still has the central line so they can administer everything else there instead of sticking him more.
They took him to dialysis at 11:00. He is retaining fluid and it’s causing him trouble breathing. They are doing the kidney biopsy tomorrow so they can determine what medication to give him that will turn around the rejection.
Today they did an ultrasound and a renal nuclear scan. It all looks okay but the function is down so it is possible that he is rejecting the kidney. They will wait and do labs again in the morning and if the creatinine is still high they will do a biopsy which will give them more of an idea how to proceed. There are medications they can give him but without the biopsy they can’t tell which ones.
We’re worried but hopeful.
Less swelling and less fluid retention so maybe things are going to be better. We will have to wait for the labs to find out if the creatinine clearance is better and that will be more tellng but Dale does look and feel much better. I’m better too – it’s amazing what prayer and a good night’s sleep will do for you! He is hungry and breathing easier, too.
BJ is bringing Jessica over today and I will post again later and by then we’ll have his labs back so I will know more.
I cried when I put Sondra in the cab to go to the airport. I would have liked to have said something profound but it would have been hard talking around the huge lump in my throat. She made it home fine though I haven’t got the details yet. I will call in the morning after she has had some rest.
Dale is not going to get to leave the hospital tomorrow. They are planning on Sunday or Monday. He is holding a bit of fluid due to the kidney being shocked from too much Prograf in his system. Prograf is one of the anti-rejection drugs that he has to have but it also is toxic to the kidney so they have to watch the level. He had too high a level and so they backed off for a day and hopefully things will level off tomorrow.
He is having to take insulin and check his sugar right now. Hopefully as the dosage of Prednisone gets lower the problems with sugar and high blood pressure will be better. The other possible side effects from Prednisone are difficulty sleeping, hot flashes, night sweats, mood swings, full face and cheeks, acne, increased appetite and weight gain, blurred vision, and water retention. Sheesh. He is definitely retaining fluid and it is making it difficult to breathe.
I had a minor melt down today. I had taken the shuttle to the hospital and went back to get the car so I could put gas in it while it was daylight. I did a little straightening up and I happened to glance down at my hand. I have been wearing Dale’s wedding ring since they took him to surgery and it was missing. It’s a little big for me and I was afraid I had lost it on the shuttle. I was crying my eyes out and taking my bag apart looking for it. I finally found it in the very bottom but for about fifteen minutes I was terrified. It’s crazy how huge things can be happening in your life and something little will make you come completely undone.
We have walked four or five times today so in that respect he is making progess. The doctors don’t seem terribly concerned yet and so far they tell me everything is fairly common. We really wanted to be the “poster kids” for transplant but we’ll do okay – we just have to be a little patient which we are not very good at.
Another piece of news is that we will be “in clinic” for three to four weeks as far as they know now. That means we might be here through Christmas and that is not something Dale wanted to hear. We may just have to have Christmas at the apartment. He will have to avoid crowds and stay in well ventilated places for several months anyway so it may just have to be a quiet kind of holiday. It’s not written in stone but it is a very good possibility. I know my kids will be disappointed as will we.