Thursday, December 18, 2008

Dialysis training

Dan started dialysis on Wednesday Dec. 10th. That means that we both started home hemodialysis training that day. There is a lot to learn so it seemed overwhelming that day but now we feel that we will do okay. We have to do lots of reading and then go to the clinic and set up the machine, check vitals, learn how to disconnect and disinfect... The only thing we haven't done yet is put the needles in but we will, eventually. The good news out of this is that Dan is feeling better even without being thouroughly dialized. (The idea is to get him used to the process and to the needles a bit at a time) So we are looking forward to the day when he is properly dialized and starts feeling like his old self.

We are still working on finding a living donor and have some prospects, but because the process is slow, we won't know for a few months.

Happy Holidays!

Thursday, October 23, 2008

Let's remember what this is about!

A good friend made me aware that I am updating Dan's health progress but have lost focus of the purpose of this blog. She is right. We have this blog because Dan Needs a Kidney. That is the goal of the blog. So please keep telling your friends, acquaintances, relatives. If they or someone they know is blood type O and would consider being a hero to us by donating a kidney, please contact us. That is why we have this blog...

Monday, October 13, 2008

Latest check up

Dan had his monthly appointment with the nephrologist today. His lab results are pretty much the same as last month's so the doctor said Dan can keep on postponing dialysis. We do know that there is a fine line that we don't want to cross. He doesn't want to wait too long because his body will get too weak. So he has to be very good about his diet and when the doctor says it is time we'll start the process.

Friday, September 26, 2008

Home Hemodialysis

On Monday we went to visit the home hemodialysis clinic. This is where they will train us both on how to do the procedure. It was such a different experience from the one to the Peritoneal Dialysis clinic. The PD nurse that was going to train Dan was distant and we felt as if we were walking in the dark. This clinic has a different approach. I was more 'holistic' in that we met with the Clinic's manager, the nurse who will train us, the dietitian who will work with Dan on his diet and the Social worker. They explained the process, showed us the machine and encouraged us to ask questions. We felt very confident when we left.

Now the big question is when will Dan start Dialysis? Well, as he told the ladies at the clinic: I'm going to put it off as long as I can". Well there you have it. I think he will know when he must do it. The doctor will probably have to be very firm with him. I'll let you all know!!!

Wednesday, September 17, 2008

Slowly moving on

We visited our nephrologist this Monday and he told us Dan sould start the process of training for home hemodialysis. This is relatively new but the doctor and our transplant coordinator strongly encouraged us to try to do dialysis this way. It is more comfortable since you do it at home on your own time. Of course the schedule is set by the Dr. and dialysis clinic nurse but the reports from patients are overwhelmingly positive.

So we have been contacted by the home hemodialysis person and they will contact our insurance and fight it -ooops- I mean work it out. Hopefully.

Again, another process that will probably move slowly... we are getting used to it.

Dan is feeling okay. He really feels sick if he eats something he's not supposed to... Sometimes we don't know what it is he ate that made him feel sick...So he really is watching everything he eats. His kidney function is worse, but his phosphorous and potassium are better as is his hemoglobin.
So we can say he's doing okay. Which is great, really.

Sunday, September 7, 2008

Just an update

Dan has been feeling okay. The vascular surgeon said his fistula was 'beautiful' and was ready to be used when necessary. The decision to start dialysis is going month by month according to his monthly labs and how he feels. He is really trying to be good with his diet which is really the only control he has.

As far as donors, we have one person in the 'paired donation' program and a couple of people having their blood tested to see if they are a match. It is a waiting game since everything takes so long...

Tuesday, August 19, 2008

Progress

DAn's fistula is 'blooming' well and the 'thrill' is strong. What that means is that the vein is handling the strong flow of blood very well. The 'Thrill' is what they call the feeling/vibration felt when you touch the site of the fistula. It feels as if he has a battery, you can really feel the flow. It is really amazing.

We don't know exactly when he will begin dialysis. It depends on his labs. He is feeling okay, tired but not exhausted.

Dan's sister will not be able to be in the 'paired donation' program due to problems with her kidney function. This is all news to her. She was sure that she would be able to give her kidney to help Dan...So we keep looking.

Monday, August 4, 2008

Fistula in

Dan had his fistula operation on Thursday and everything went well. He had some pain that night but that was it. His follow up appointment is Wednesday and we will then find out more information as to how to determine when the fistula is "ready".We'll go back to our schedule this week which is that Dan works in the kitchen Wednesdays and Thursdays. We both do the shopping on Tuesdays and if needed he helps prep if not he rests if he needs to.
Will update in about a week.

Wednesday, July 16, 2008

What now?

We just found out that a potential donor will not be able to give Dan a kidney. You can't imagine how crushing that is. Our friend/potential donor is also extremely disappointed.

So now we go back to a vascular surgeon to have an appointment to have a fistula put in his arm. This will allow for hemodialyis. The fistula has to 'ripen' ...( where do they come up with those terms? 'cure', 'ripen'. You would think they were chefs and not surgeons. ). And we are still in serious need of a kidney. What we can do now is have Dan's sister Leah and anyone else who may be willing to go on the 'swap list' That's where they try to match our donor to a patient who may have a donor that matches Dan. Anyone interested please let us know and we will give the coordinator's name and phone number.

Monday, June 30, 2008

Dan's first week back at work

Last Tuesday, June 23rd, was Dan's first week back at the restaurant. He worked as host in the dining room. He was able to stay from opening thru closing. He wasn't able to do that when he was trying to get 'used' to the PD catheter. He did get very tired every night and had to rest during the day but he said that it was a 'good' tired because he was so happy to be back at work.

He had a fever on Friday and Saturday night, but not during the day and not throughout this weekend. So we will watch it and if he gets it one more time he'll go see the Nephrologist. The good thing is that this week is only a three day week for us!!!

Thursday, June 19, 2008

Visit to doctors

Dan went to see his nephrologist on Monday and the doctor said he looked much better. His color is better, he is not as pale. They drew blood to do more tests and options for dialysis were discussed. Since Dan says he will NOT do Peritoneal, we discussed Hemodyalisis. For Hemodialysis a vascular surgeon has to set up a port in his arm where during dialysis they put two needles, one to take blood out and one to put it back in. Luckily, they are letting him wait till he recovers fully!

Today we went to see the surgeon so he could check his healing progress and it looked great! We may not have to go next week if we see that it is closing nicely.

We will have to make a decision late next week as to when to do the port in his arm, but right now we are just enjoying the healing process!!!

Friday, June 13, 2008

Recovering from infection

Dan was released from the hospital on Tuesday afternoon. After being on IV antibiotics for the STAPH infection they felt he could come home with oral antibiotics since the strain was not an aggressive one.He has to rest and get his strength back and we have to take care of his wound, which was left open...We will have home wound care for a few days.

He had an appointment with the surgeon on Thursday and he said everything looked good and that the wound should close pretty quickly. Dan feels well but very run down. That's to be expected since he felt run down before the infection because of his kidney disease. He feels worse now but on the mend.

We have an appointment with the nephrologist on Monday morning so I will post later that day.

Sunday, June 8, 2008

Bye Bye Peritoneal Catheter

After two weeks of discomfort Dan had to go to Piedmont Hospital's emergency room on Saturday morning. He had a slight fever and his surgery site was pretty pink! As soon as the ER doctor saw it she said "you're infected" and that was the beginning of the end of the catheter. The nephrologist on call said "it looks terrible, it has to come out" then came the surgeon and he said "It will come out tomorrow morning".

Sunday at 9 am the surgeon removed the catheter and Dan is recovering at the hospital. I have to say he is happy it is out. He never felt well, always had pressure and pain. The nephrologist said that it is very rare that an infection happen so fast and early since he hasn't even started dialysis. They are waiting for the results of the culture to see the precise antibiotics to give him, although he has been given antibiotics through a drip since he checked in.

What happens now? Dan will have to think about his choices and make decisions. He has time to do that while he recovers...

Thursday, June 5, 2008

Peritoneal catheter flush

Dan had a busy medical day today. He went to the nephrologist's office to have blood drawn because he has an appointment on Monday. Afterwards he went to the surgeon's office to make a follow up appointment and it so happened the doctor walked by and decided to see him right there. He changed his dressings and said everything looked good but did not take his stitches out. ??

Then he went to the dialysis clinic where the PD nurse run 1000cc of saline solution but only 750ccs came out... Ritta (PD nurse) said not to worry. He will get rid of it as he goes to the bathroom. We will have to learn not to worry when Ritta says not to worry.

I didn't go with him but did call Ritta later. I had some questions about the training schedule. We had understood that the training went on consecutive days, but that is not the case. He will go next Thursday for about 4-5 hours and then the next two Tuesdays and Thursdays. The appointments are at different time of day each time. Then, sometime in July he will get the machine. She also told me that Dan won't feel well right away and that PD is a process and it takes time. Each time he does it he will feel a bit better. After he gets his dialysis established he will feel well, have energy, etc.

Because he had his incisions manipulated twice today Dan has had some pain but we are sure tomorrow he'll be better. He has been able to work a couple of hours each night and should be able to stay for the whole shift next week.

Wednesday, May 28, 2008

Dan's surgery

Dan's surgery went well except for the fact that they moved it from the am to the pm and I couldn't be there. So two of my best friends took my place and were there when he came out of surgery, went and filled his meds, took him home, made sure he was okay and waited until I got home from the restaurant. I am very grateful for them!

He is sore today and resting. Since the surgery lasted about one and a half hours, he is also recovering from the anesthesia... If he feels better tomorrow he can be at Tierra in the evening as maitre'd.

Friday, May 23, 2008

Dan's story in the press

Dan's need for a kidney was featured yesterday in Meridith Ford's "The dish" column in AccessAtlanta, a magazine of the Atlanta Journal Constitution. Meridith is the food critic for the AJC. She called us last week and did a phone interview of both of us (she was not allowed to interview us in person in order to keep her persona a secret.)

We are very grateful for the exposure and hopefully it will help us in this search. If anything, it makes people aware that there are thousands of people in need of organs and that a person can donate a kidney and have a normal life.

Thursday, May 22, 2008

Getting ready for Peritoneal Dialysis

In order to get Peritoneal Dialysis Dan needs to have a catheter placed in his peritoneum. He has been scheduled for that surgery on Tuesday, May 27th in the morning. Eight days later, on June 5th, he has to go to the dialysis clinic so that the Peritoneal Nurse (PD nurse) can run liquid through the catheter to make sure it is working correctly and a few days later he can start dialysis.

The process of learning to give oneself PD is intense. He will have to go to the clinic for about 6-7 days for 4 hours a day so that the PD nurse can teach him how to do it. He can then handle the exchanges himself, at home or at work. He will have to do 4 exchanges a day for a month and after that his prize is a little machine that handles the process for him while he sleeps at night....I am sure that will be a great day!

Friday, May 16, 2008

Calling all Type Os

Dan’s blood type is O+. For an O patient, only another O person is a possible donor. For organ transplantation a positive or negative blood type is okay.

Dan has one sibling who is Type B, therefore not a possible donor. I am Type A, again not a possible donor. He has had two friends go on through the physical part of the matching process for a kidney transplant only to have them find out they had health issues of their own.

What Dan needs is a Type O person who would be willing to go through the screening process to become a living donor and give Dan the gift of life.

Thursday, May 15, 2008

Slowly being poisoned

In 2003, Dan went in for a regular checkup and came back from the doctor with a Polycystic Kidney Disease (PKD) diagnosis. He didn’t have any symptoms at that time so that was quite a shock. Since then his kidney function has deteriorated, first slowly and much faster in the last six months.

Because of his reduced kidney function, Dan suffers from chronic fatigue, loss of appetite and back pain caused by pressure from his enlarged kidneys. For some time now, we have been splitting our work at Tierra so that he doesn’t have to work five days straight in the kitchen, which can be grueling and exhausting. When he burps he gets an ammonia aftertaste and his skin color is becoming pallid as a result of the build up of toxins in his blood.

Basically, he is slowly being poisoned. Patients with PKD are highly encouraged to get a living donor before they have to go on dialysis. Unfortunately, this was not to be. Dan will have to start peritoneal dialysis soon.