Dan needs a kidney

The six month mark

2010-02-28T18:59:00.000-08:00

Today Dan's new kidney is six months old...He has been very fortunate to have had no problems, no rejection episodes, no colds, pneumonia, etc. We know that risks for all those things will always be there but it is comforting to have crossed this milestone without serious complications.

Our life has gone back to normal. Dan is cooking three times a week and I cook twice.

The memories of all the troubles with dialysis, finding a kidney donor etc are starting to fade, to what I say "thank you brain!'

If you are reading this and are in search of a donor, or with problems with dialysis please feel free to e mail us and we will very gladly try to share our experience.

If you are one of our supporting friends, THANKS!

Moving along

2009-10-06T06:52:00.000-07:00

The last weeks have been so busy for me I haven't had time to update the blog... sorry. Medically, things are going well. the Drs are tweeking his meds and one of them has him shaking a little bit. Not his body, but his hands. So I imagine they will keep tweeking...

Today is Tuesday and Dan is going to work with me in the kitchen for a few hours to help me prep !!!! yeah! He went a couple of times last week. The first day he was ready to quit in about an hour and a half. The second time he felt great! he stayed for a couple plus hours. He still comes home and rests, but that is normal. So I imagine this week he will feel better. This week he will work the dining room from Wednesday through Saturday. Hopefully there won't be customers coughing because that could put him at risk. I guess we will play it by ear.

We will keep this blog four about a month and a half more. The three month mark is important, and after that hopefully things will be routine.

Staples out!!! Third post op visit

2009-09-16T11:07:00.000-07:00

Dan had his third post-op visit today and the best part was that they removed his staples! Anyone who has had staples after surgery knows that days before the date when they are to be removed they become the main issue in your mind. They pull anytime you move, they hurt. So today was a good day! Dan said he immediately felt better...

We also found out the 'protocol' for the f word (flu x 2= H1N1 and seasonal). He can't have the immunizations because, in Dr. wolf's words, "it would be like giving you saline" So the plan will be to avoid crowds for at least 3 months and if someone is coughing where he is, run like hell! No, not really, but almost. He shouldn't go into the dining room a Tierra if someone has been coughing and he should go places at off times -like the movies (matinee) or Starbucks (2 pm). What that means for us is that he probably will come back to work in the kitchen first and work in the dining room on slow nights.

It was information we needed to get and it is okay. He has his future back and I got my husband for many years to come thanks to the gift Kathie gave us. It's awesome!

Pictures we'd like to share

2009-09-09T10:44:00.000-07:00

Kathie and Dan

Kathie and Dan's family

Dan leaves the hospital

Second Post-op visit

2009-09-09T08:32:00.000-07:00

Dan had a follow up appointment this morning. Dr. Wolf said he is doing well, even though his creatanine was a bit higher than last Friday. Creatanine measures the waste in the body, so it is a very important number in the lab reports. Not to worry, said Dr. Wolf, they expect that it will fluctuate a bit.

One of the most important things he needs to do now (besides taking his meds on time) is drink lots of water. Dr. Wolf said that if Dan drinks coffee, he needs to add to his water consumption. So instead of 64 oz he will have to drink 74 oz plus...
Well, he has to keep that kidney working and hydrated!

We re-opened the restaurant yesterday, so I will not be at home with Dan. For now his sister Leah is here from California and next week he should be fine by himself.
He will also feel like having more visitors which will break the monotony. It's great to know that all is well!!!

First clinic appointment

2009-09-04T11:06:00.000-07:00

We had our first clinic appointment today. Dr Wolf, one of the post transplant nephrologist- said he is doing really well. His labs were good, right were they want them to be and next week he only needs to go on Wed. The week is messed up because of Labor day but the week after that he will have to go two days.

He is sore today but that's because he sat too long yesterday. The Dr. said he needs to keep moving and sitting and that it will get better. His meds were not changed at all. Each time he goes to clinic they see if any of the meds need adjusting.

He is still not allowed to go out into the world... They will let us know when he can venture out.

Our donor is also doing very well. It's a wonderful world!

We are home

2009-09-02T11:52:00.000-07:00

We left the hospital yesterday at 3 pm. Dan is doing well, he is walking the dog and then resting... Of course his surgery site is sore but nothing tremendous. We put all the meds in pill boxes last night. The ones that he is supposed to take in the morning didn't fit there are so many. But the truth is that we are so lucky to live in this day and age where you can have a transplant and go home in 5 days!

It was great to be home and have a full night sleep!!! He is not the only one to feel better...

I have asked a friend to post some pictures because I don't know how- so hopefully you will see some soon. I will keep updating if you will keep reading... Thanks for all the good wishes sent our way. We know that all that energy worked really really well.

Monday's update

2009-08-31T16:22:00.001-07:00

Dan had a rough day on Sunday, retaining a lot of liquids which was very uncomfortable. Monday has been better. They took the catheter off and he had lost a lot of all the water weight. He is walking and sitting down (which hurts more) and resting. We took a post-transplant class and learned about all the meds etc. Good news: he has no dietary restrictions!!!!yeah!! so he can have the ice cream and coke I have waiting for him at home... But I also have some good food that I cooked for him (and the donor) in the freezer. AND we get to go home tomorrow! More to come

First post op afternoon

2009-08-29T15:14:00.000-07:00

Dan has done really well today. He has walked the hallway twice and has been allowed to start on solid food...Great news right now is that our donor is feeling better. She hasn't eaten yet, but is also walking the halls. They did tell us that the donor's recovery is much harder that the recipient's, specially the first two-three days!

First night

2009-08-29T05:19:00.001-07:00

Dan had a good first night, even though the nurse came every two hours to check all his numbers etc. He is being allowed clear liquids and hopefully after doctor rounds he will be up and walking a bit and maybe graduate to a full liquid diet...His pain is okay. Our donor has a light fever this morning so please send her all your positive energy!Will update after doctor's visit.

Dan's got a kidney!

2009-08-28T10:58:00.000-07:00

On behalf of Ticha and Dan we'd like to share that Dan's transplant operation has been successful. Dan is recovering nicely and there'll be no need for him to spend time in the ICU. They are moving him to his room soon.

All of us are ecstatic and filled with joy. And, oh! so very thankful.

The day is getting near

2009-08-26T16:49:00.000-07:00

Dan has to check in at the hospital tomorrow Thursday at noon. I guess he will talk to the anesthesiologist, surgeon and do last minute blood work and chest x-rays. Surgery is still scheduled for 7:30 am on Friday.

After waiting all this time I keep waiting for the other shoe to fall. It seems unreal that we are finally going to get a kidney! Please check Friday pm to see how the surgery went.

COUNTDOWN BEGINS

2009-08-13T15:19:00.000-07:00

We feel so confident that Dan will be getting a kidney on the 28th of August that we have started a countdown. Something could still come out of the loop, but we are not thinking that way. We are also cooking and freezing food for both our donor and our home! Very exciting!

Once in the hospital i can update the blog since they have wi fi so please check here.

Got KIDNEY!!

2009-07-22T08:32:00.000-07:00

Well, after two and half years and 8 potential donors, we finally have a kidney!!! A wonderful woman passed all the tests and will give Dan her kidney. The date will be August 28th. It took about three days for the good news to sink in but now we own it. WE HAVE A KIDNEY!!!

Dan has a couple of tests (X-ray, stress test) to take and hopefully he is going to pass them with flying colors and we will be at Piedmont on the 28th. I have been told that sometimes things happen and they have to cancel the transplant. Please send all your energy our way so that things run smoothly and Dan can be healthy again. And thanks to all that have prayed, chanted and sent us positive energy which helped us get to this point. Thanks, thanks.

Please keep checking in to learn how things are developing.

Summer is here but ...

2009-06-15T17:48:00.000-07:00

I started this year with the hope that Dan would get a kidney in 2009. Now summer is here and we don't have a kidney yet... Of course the year is only half gone, but the process is so slow that I feel somewhat discouraged.

We do have a potential candidate that will get her physical in July and hopefully she will be healthy, healthy, healthy. It is hard to be positive and be prepared for the bad news, all at the same time. The brain plays tricks on you and you start mentally making plans about the transplant, the logistics for the business etc. and then you bring yourself down to reality. That is the reason that Dan stays a little detached from the process. The ups and downs are emotionally draining. He is getting adjusted to dealing with dialyisis while mantaining a working schedule. No easy task....

Great webinar

2009-05-20T10:47:00.000-07:00

I just watched a webinar about kidney transplantation hosted by the PKD foundation . It has 'everything you ever wanted to know about kidney transplants'. The John Hopkins doctor does a great job of explaining the wait, the benefits of live donations, etc. Then he answers questions.
If you are interested please go to http://www-waa-akam.thomson-webcast.net/us/dispatching/?event_id=e301cee92ab960ec523fdb6fc4f5d5c4&portal_id=b20ccfb37b06dc2e8d0e1573b7371e7b

Life goes on...

2009-05-06T16:56:00.000-07:00

Yes, we have settled on our routine. But we can't say that dialysis has not impacted our lives. Pretty much everything we do has to have in mind the fact that three days a week are pretty much shot for Dan. And we really only have Sunday off, since Mondays we go to Restaurant Depot and any other errand we may need to do (Sam's, Publix). I still go to the market on Tuesdays and then on to do prep.

One of our candidates was affected by the economic downturn and won't be able to finish testing. We have another candidate that's will be tested. We are so lucky to have had several candidates. We also got response from the article in Creative Loafing. They are all heroes!

We are doing okay hanging in there but please keep us in your thoughts!

Dialysis and donor news

2009-04-09T07:24:00.000-07:00

Dan is now set on his dialysis routine. Clinic dialysis is really different from home-hemo. He still gets really wiped out and if he has to can do maye one errand after treatment but then has to come home and rest/sleep for most of the afternoon.By the time he gets to the restaurant to be the host he is starting to perk up. By the next day he feels great! He feels strong and healthy.

Our work routine is also set and working well.

We are still looking for a donor. Like I said, we have some prospects but so far no luck. So PLEASE spread the word about Dan. We really really need a kidney!!!

Long and winding dialysis road

2009-02-06T13:53:00.000-08:00

I cannot begin to describe how intense the training for home hemodialysis is. For us, it meant waking up at 6:45 to get to the training clinic by 8, getting out anywhere from 12:30 to 2 o'clock. We have arrived at the restaurant by 12pm for 10 years, so by the time we got there from training we were stressed and behind in our prep. Danny felt better so that was the carrot at the end.

We should have been home with the machine two and a half weeks ago, but our training nurse broke her foot, so for two weeks we were just coasting.

Last Friday, after a treatment full of problems, Danny decided that the modality of home hemodialysis was not for us. It is perfect for patients with normal hours, people who work during the day and get home in the evening, have dinner and then dialyse. For us, it was constant stress. So he decided to switch to in-clinic dialysis which means that he goes Tuesday, Thursday and Saturday to get treatment.

He started in-clinic yesterday. He had to be there by 6:30 and finished by 11:45. His treatment may become shorter after a couple of tests, but for now he has to dialize for four hours.

After his treatment he felt worn out but today he feels great! We think his body will get used to this modality after a few weeks of treatment. But we are already less stressed and that's great!

Dialysis training

2008-12-18T15:24:00.000-08:00

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!

Let's remember what this is about!

2008-10-23T11:31:00.001-07:00

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...

Latest check up

2008-10-13T14:42:00.000-07:00

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.

Home Hemodialysis

2008-09-26T21:29:00.000-07:00

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!!!

Slowly moving on

2008-09-17T11:04:00.000-07:00

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.

Just an update

2008-09-07T08:58:00.000-07:00

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...

Progress

2008-08-19T20:21:00.000-07:00

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.

Fistula in

2008-08-04T19:23:00.000-07:00

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.

What now?

2008-07-16T17:49:00.000-07:00

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.

Dan's first week back at work

2008-06-30T15:59:00.000-07:00

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!!!

Visit to doctors

2008-06-19T09:30:00.001-07:00

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!!!

Recovering from infection

2008-06-13T06:58:00.000-07:00

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.

Bye Bye Peritoneal Catheter

2008-06-08T14:34:00.000-07:00

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...

Peritoneal catheter flush

2008-06-05T16:17:00.000-07:00

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.

Dan's surgery

2008-05-28T14:37:00.000-07:00

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.

Dan's story in the press

2008-05-23T11:51:00.000-07:00

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.

Getting ready for Peritoneal Dialysis

2008-05-22T11:45:00.000-07:00

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!

Calling all Type Os

2008-05-16T00:20:00.000-07:00

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.

Slowly being poisoned

2008-05-15T23:21:00.000-07:00

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.