Category Archives: Personal

Addendum

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!

Wednesday Morning Kidney Transplant Update

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.

Tuesday Morning Transplant Update

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.

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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!

Day Seven Morning Update

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.

A Little Better

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.

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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!

Sunday Day Six

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.

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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.

Saturday Update

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.

Day 5 – Better So Far

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.

Day Four of Transplant Week

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.

Things Are Going Well

Sondra got to leave today. She is at the apartment and I will be putting her on a plane tomorrow. She and I went and ate supper with the other residents of Twice Blessed House this evening. The Junior Service League did the cooking and we got to meet a few other folks there.

Dale made two trips around the nurses station today so he is slowly getting stronger. He ate a bit more too.

I spend a large amount of time either hunting a parking space or trying to find the shortest route to or from wherever I have ended up parking the car. The silly part is I can see the apartments from the hospital. I would probably do better with a bicycle (providing I could still ride one – it’s been a few years!)

The big excitement of course is the Cowboys/Packers game. Funny thing about life – ordinarily Dale would have it on and be yelling at the tv while I frown about all the noise and end up in the bedroom on the laptop. I’m still on the computer but he could care less about the game and is catnapping.

Here is a picture from earlier today, just before I took Sondy to the apartment.
post transplant

They both look good for just having had major surgery don’t they? She will never know just how much this means to all of us.

Day Three Of Transplant

I went back to the apartment and slept last night and evidently I needed it because I didn’t know a thing til 5:30 this morning and then I was awake and ready to go. I did some straightening up and got things ready because Sondra should get to go there today. I checked on her a bit ago and she was sound asleep. They had given her something for gas and she was finally able to rest easy.

I didn’t know that they use air during laparoscopic surgery (not sure how that is spelled) so there is gas in your body after and it tends to migrate to your shoulders and is extremely painful. It slowly got better during the day yesterday and I think it must be much better now because she never moved when I peeked in on her. She looked like she was actually resting instead of napping.
Dale went for a short walk this morning and is napping. They should be bringing him breakfast soon and while he is eating I’ll go check on Sondra again. Her doc should be making rounds around 8:00. It’s going to be a busy day!

Here is a picture of Dale and Sondra the morning of the surgery.
Dale and Sondra

Transplant Update

First – if I forgot to call you – I’m sorry.  I was stressing over the kids driving home and trying to keep up with Dale and Sondra and anyone that knows me knows I can’t multi-task!

Dale is in a room.  They told him he can probably have “real” food at supper – as opposed to liquids only.  Sondra is having some pain today but she has been up walking a little so she is still making progress.  She already had some real food (which we are not telling Dale yet since he is hungry) and I’m hoping that a little food will help them both sleep better tonight. I may go back to the apartment and sleep. I got Sondra moved out of her apartment this morning and switched over to ours so when she is released from the hospital I can just take her home with me until she is ready to fly home.

I want to take a moment to post a few links.  Jeff Boggs has a link on the Teche Matters part of the Kane Radio 1240 Station Website  for the Louisiana Organ Procurement Agency and interviewed Sondra on the radio this morning.  There will be a link to the interview so you can listen to it but it’s not up yet.  You will be able to find it here. I am adding a link to a page at Baylor about organ donation.

I’ll try to post again tonight!

Transplant!

I am not at my writing best lately and certainly not today. It has been a long exhausting day but I am sitting in Sondra’s room – she is doing great and can push the button on her morphine pump whenever she feels the need. Dale is in ICU and I just went to visit – I will get to go again in a few hours. He is doing fine, the kidney pinked up right away and started doing it’s kidney “thing”. Dale is groggy and goofy but not in too much pain. His blood pressure went a little low so they are backing off on sedation and pain meds to get his pressure up. His color was so much better right after surgery than it has been in years. The first thing out of his mouth when I got to see him after surgery was “How is Sondra” and told me to hug her and thank her. The first thing she wanted to know when I saw her was how Dale was and wanted me to tell him that it was worth it.

I did fine until the doctor came out and told us everything was fine and then I had myself a little meltdown but half the folks in the waiting room were a little weepy, so I didn’t feel bad.

I’m just talked with my kids, they are between Commerce and Paris and on their way to our friends house for NCIS night. I was glad to talk to them knowing they had made it through traffic in Dallas since they left right at 4:30. They should probably be doing homework but I think they are hanging in there pretty good just going to school yesterday and tomorrow considering.

Quite a different atmosphere from when we were here last.  All the doctors and the nurses are happy and that is such a change from being here when he was sick.  They all seem to truly be excited about the whole process. I guess like anyone they are happier when they make a positive difference in someone’s life.

We see so much bad in the world.  When we get to see people be kind and selfless it makes us hopeful and sometimes hope is the best thing to have.

Tomorrow they are saying I can get a wheelchair and take Sondra to see Dale.  If he continues to do as well as he has he will be in a regular room tomorrow. Goodnight and thank you to all who have sent emails, prayers, and good wishes.  I have felt it all and it has given me strength.

Monday Night

I took Dale to dialysis (hopefully for the last time) remembering once again why I would NOT live here.  It took a little while to find the place and we were already tired and frazzled.
Sondra is with the rest of Dale’s sisters and his niece is driving in.  I’m waiting for my kids to call and then I will go find them and lead them in.  I will feel a lot better when they get here.  They have no experience driving on freeways.
We have been to so many places today and signed so many pieces of paper – I felt like I was buying a house.

Dale was feeling pretty rough after dialysis so we took him back to the apartment with some food – he had a bad headache and we were meeting his sisters down the block to eat and he didn’t feel up to noise.   The kids made it in fine and so we ate and then went back to the apartment to crash.  We have to be up at 4:30 to get to the hospital on time.

Pre-Surgery Sunday to Monday

Yesterday we got Sondra home.It was a rainy cloudy day and again today the weather was cold and wet. This morning we went to both the church we attend now and the church we had attended for ten years before this, and got prayed over at both places.

A cousin of Dale’s and his wife and family came from out of town to be there for prayer at the first one. We have missed folks from the second and it was especially good to see and hug old friends. After the service they had us come down front and most everyone came and stood with us for prayer. We were talking to a few at the end and I looked up and the daughter of a friend was standing there just looking at me. It took a moment to realize that she couldn’t speak but she had big tears in her eyes. I hugged her and told her it would be okay.

We had just enough time to eat lunch and load up the car for Dallas. We made it back to Dallas after limping along through slow traffic and went to pick up the keys for Twice Blessed House. Instead of having us one two bedroom they had two one bedroom apartments which meant two deposits and two payments. I hope to talk to someone about that tomorrow since no one for the actual apartments was here tonight. No one let us know anything was different and we had called to confirm our reservation so I am not happy about that. We were tired, grouchy, and hungry and went to eat and to Target to pick up some things that will be needed.

I don’t have access here which is a disappointment but I’ll have to live with that. Through all this my nine year old nephew has been wonderful. He dealt with the flight cancellation, road trip to Texas, staying over night with strangers, driving two hours from the airport to our house, sitting through two church services, driving back to Dallas, all more maturely than I did, I think. Tomorrow is tests and dialysis. The rest of the sisters will be driving in as well as my kids so they will all be here for the surgery Tuesday morning.

Posting from Baylor Monday morning!

And So It Begins Part III

Sondra is here! She would have had a 4 hour layover in Houston if she had flown but there was a couple who was driving to Frisco and they adopted her and Michael. They drove them to Frisco, had them spend the night with them and took them to the airport this morning to deal with the ticket refund stuff. We picked her and Michael up and finally made it home. We stopped in Frisco and ate lunch and Dale said something to Michael about taking him back to the airport – Sondra said she would rather have a kidney removed than go back to the airport.
We didn’t know she had decided to drive until this morning when Dale called her. It’s a good thing we didn’t know or we wouldn’t have slept.

Michael was a little disappointed that he didn’t get to fly but we’re getting him pizza tonight and promising that he will be able to fly home soon.

Aaaaarg Or So It Begins Part II..

We got almost to the airport when my cell phone started ringing, beeping, and vibrating all at once. Of course it was in my pocket under my seat belt and I was in the middle of traffic on 75! I finally managed to retrieve it and handed it to Dale who is even more cell phone challenged than me. It was my son – Dale’s sister’s flight was canceled. She was trying to get another flight and would call him back. We finally found a place to pull off and I called her. She was in line trying to get another flight and we arranged for her to call us back when she had an answer. We walked around Office Depot and Circuit City, cell phone in hand waiting for the call.

We did discuss waiting in the parking lot and hoping to spy some little old lady with cigarettes but we did not smoke.  This has to be some kind of award winning mark of self discipline. She now has a flight scheduled to arrive tomorrow afternoon as there were NO more flights out of Lafayette tonight. A half tank of gas and several hours later we are home.
I am decidedly UNhappy with American airlines and of course worried about her getting bumped or something else happening tomorrow.  Thanks to all of you who are praying for us and please keep praying that she gets here!
This is NOT going to be a transplant omen.