transplant day 2

Yesterday was up and down for Bruce. The head Nephrologist was there again and said his creatin is slowly coming down, so they will just see what it is tomorrow and hope it continues. If it doesn't go down, they may do an ultrasound to check things out. His urine output is supposed to eventually have no blood in it and this morning it got more red so they started a drip of a solution that irrigates in the catheter to prevent any blood clots. He said it was not abnormal. Later in the day Bruce had some intense pain and it turned out the catheter tube was blocked where there is a connection. They flushed it out several times and he was better. They started a second anti-rejection drug mid-day. Throughout the day his blood pressure started rising. The anti-rejection drug can also contribute to that so they changed BP medicine. Then he started getting the massive headache like he has had before. The BP did not get better, it actually got worse so about 8pm they upped the dosage of the BP meds. I believe he is now on 2 of them. (maybe 3?) They had to give him tylenol and benadryl before they started the 2nd anti-rejection drug. It all gets to be confusing when they come in with so many things. And his nurse has a Russian accent so I rarely understand the pronunciation of the medicines so I look at the labels and peek at the chart.

He has no appetite and is only taking small bites of food all day. Ken also has no appetite and has barely eaten anything. Both of them still have the bad bloating gas pains. For Bruce it only gets better by getting up and moving around. Tonight getting up made his blood pressure go way up and when he sat back down he was nauseous and threw up a little. But he quickly recovered and took some BP med and ate a little. Right now he's feeling very frustrated because he can't ever feel stable- it's one thing after another. He's just miserable most of the time. All of these issues should resolve as the kidney starts to work more then the BP should get itself under control. As he moves around more and gets an appetite, his stomach will settle. The doctors all think he's doing well and tomorrow's creatin level should be better. He did get up 3 times and was doing very well with that. It's a shame there has to be other issues making him feeling so rough that he can't be positive yet.

Ken could possibly leave tomorrow if they see his blood is ok and he doesn't have a fever. If not he may get an antibiotic or stay till monday. They didn't visit each other today because neither felt good for long not to mention that TGH is one huge hospital that is a maze to get through.

Post- surgery day

Both Ken and Bruce feeling very sore and bloated. Ken was able to get his pain medicine switched to Delotted and that made a difference for him. Bruce was on a low dose, so they upped the dose. But he only used it 2 times. The pump is there for his use every 10 min but he doesn't want to push it because he knows the side effects of the pain meds, but he kept complaining he was in so much pain. He's having his typical out of it and irritable reaction to the pain medicine. Later in the day he was much better without it.

The head Nephrologist from Lifelink came to see him. He said Bruce was doing very well. They did dialysis last night for 3 hrs. in middle of night because he had a high potassium reading. Today he said he didn't see need for anymore dialysis. His creatin is coming down slowly and all the other levels look good. He reduced the bloodwork to just once a day now. That means the kidney is WORKING!!!!!!!!!!!!! yahooooo!

He told him it was ok to have pain and not feel like moving today but tomorrow they were getting him up. Later in the day the pain that was worse was GI abdominal pain. They gave him something like a mylanta. The pain made him want to get up and see if sitting up helped. He tried to get up and sit on the side of the bed, we got half way there but all the cords were pulling on him making him twist in a way that hurt the incision. He needed someone there who was a little more prepared to handle it I think. He wanted to go out on the other side of the bed. But the nurse couldn't get the cords to reach that far. He's got about 6 coming out of him in different places.

Meanwhile they brought him his first real food for dinner. Dr. ordered a "soft" diet. He ended up taking bites of different things but the bloating is keeping him from being too hungry. At least he's not throwing up like all the other times in the hospital.

I told him that he looked good and that if gas and pain from incision is the only problem he has right now then he should be so thankful. I know he can't remember the pure hell we went through the other times in the hospital, but I sure do, and so far this is a huge improvement. I told him I am so happy that everything is going so well. I don't think it has even sunk in with him yet. He said he's just overwhelmed and feeling like it's surreal (and he's still drugged). After they get him up and moving and his stomach settles, he's going to be really happy. He said there was always a pressure and weird feeling in his eyes and that is the first thing he has noticed has gone away. Ken called and they chatted a little, tomorrow Ken might be able to go in wheelchair to see him.

And another thing - everything has gone very smoothly at the hospital. You push the button and a nurse answers immediately and someone comes in right after that. Not like before in Ft. Myers where we could wait 15 min for a response to the button. Everyone who has entered the room knows their business. They don't look lost, confused, irritated, etc. When the Dr orders something it happens very quickly. I haven't had to ask for one darn thing! wow!

Transplant Update- from yesterday

Both patients doing well. Ken went into surgery around 7:30 and was done about 11:15. We got to hospital at 6am and Bruce was taken to surgery around 10:30. Ken's surgeon updated us when his surgery was complete. He said it all went well (it was laproscopic) and he had a big healthy kidney. Ken woke up in lots of pain but we visited him after he was sent to regular room and he was doing a little better. Bruce's surgery was about 3 hours long and he was out of surgery around 2. His surgeon said that it went totally normal and the kidney was already making urine halfway through the surgery and continued to after he was out.

Bruce got to regular room- no ICU- yay! around 10pm. The nurses have been very attentive and informative. They are taking blood every 6 hours and to monitor all kidney function. Everything seems to be going as expected. He is on a lot of medication including anti-rejection drugs. He is allowed liquid diet today and seems to be handling it well. The biggest problem for him and Ken is the pain. Both of them are complaining the medicine is not working. I think they are switching Ken's from morphine to something else. Ken will be getting up to walk a little today but they wont try that with Bruce until tomorrow.

I believe he looks really good compared to the last surgery and especially after the seizure and the bleeding to death incident. All things feel really positive right now and I hope it continues down this road.

Planning for the big day

Whoa...time is flying. Just as the holidays are over, it's the typical struggle back into work and school routine. I was enjoying the help and days off but now we are back in the scheduling nightmare of getting everything done and everyone where they need to be. Top that off with the hundreds of details to be planned out for the following week which is the transplant surgery! YES one week from tomorrow Bruce will get a kidney. It brings up many complicated emotions that I can't express. I am excited, anxious, worried, skeptical, scared, ...you name it! I feel like any second someone is going to say- sorry, not going to happen. I want to look forward to a more normal life but too scared to believe it.

Sean had his transplant last Tuesday at Vanderbilt and was released on Friday with the donor as well! They told him to expect just 3 days in hospital, which I have never heard from anyone else in all of my reading blogs and information about kidney transplants. He is doing well though, he had a few scary things happen so far but overall things look excellent for him. From what I know, his donor Jeremy did well enough to get out and then travel to Orlando to stay with parents to recover before going back to California. The whole thing is a miraculous event.

Bruce's health seems stable the past 3 days. He caught the throat infection Beck had with the soreness and a fever. He got an antibiotic immediately and felt better within 2 days of first getting symptoms. The Dr. said he is not getting enough clearance and needs even MORE time on dialysis machine. (he's already at 5 hours). But he's not going to increase it since transplant is so close. His BP was still very very high but they dont want to throw a new drug in the mix of all the others at this point. However, on Friday Jan 1st, when he got to dialysis his BP was low and dialysis dropped it even lower! That is the norm for most people on hemo dialysis but that has never happened to Bruce. The headaches and nausea still occur and he has times where he is very ill. It's up and down all the time. A transplant cannot come soon enough.

I called 2 people at Lifelink who answered my questions. It was a quick conversation and they were very helpful. Then right after that the Head Transplant Coordinator called me to ask if there is anything she can answer or help us with. That was very nice but by that time I already had all questions answered. It just made me wonder why our own transplant coordinator did not do that or even answer things when Bruce called many times. He was told to just wait on the info to come in the mail. Which was the one sheet of the schedule for pre-op visit. It's just a little odd. In the beginning of this process, I was thrilled with how informative, professional, and on top of everything they were as a whole organization. It's good to see that again.

I wish money was no object and I could take 2 months off, rent a place, take the kids, my parents, and the animals with me to Tampa and we see Bruce through this process, but that is not the case for us. That means a scheduling fiasco for me and the family. The few days before the surgery are a real issue since Bruce can't drive, I have to take him to Tampa on Monday night, then come back home to care for kids and work until Wednesday night. Bruce needs dialysis here early on Monday and in Tampa somewhere on Wednesday. We have been trying to get that verified for over a week and still no luck. Our insurance says the social worker at the dialysis center should do this, but she is MIA. Literally now. Bruce has only seen her once in 6 months and now she just had a baby. Why isn't someone taking her place? I don't get why things have to be so difficult.

And of course there has to be 3 vacation days and 3 1/2 days in the month of January for Beck's elementary. They aren't on a year round schedule, but every month there are days off. Some of them are hurricane make up days. Both my parents are working and I have to continue to work. The post transplant visits for Bruce- driving 2 hours to Tampa 3 times a week for a month - are going to be impossible. I just pray he does well and they let him do some visits here at his dr. in Naples.

I have started making lists of all that needs to be done and its not looking good for me for the next week. But it's all for something that is hopefully going to change his life.

Merry Christmas

YES! It was pretty good! I think Bruce managed to make it through the past few days fairly well considering he's still feeling bad. Same symptoms, occasional vomiting, massive headaches, and VERY high blood pressure. He spoke with Dr. last monday before Christmas and told him his BP readings- 170's over 100's on average. Dr. said to just take Fiorcet for headache pain everyday as prescribed, not just when he gets the headache, and see if it helps. I can't believe he didn't change the BP medicine. I know it was just changed the week before, but he said it would be instant if it worked and call him if he wasn't better. I am not sure if maybe he has decided best not to try new one and get side effects, and he's just waiting it out for the transplant. This is very unsettling. I feel like we are just buying time and hoping to get to Jan. 14th.

Luckily he has made it through most of Christmas without being miserable. He had dialysis early on Sat and was able to come to my parents to have dinner with my family afterward. Usually he is so ill for at least an hour or two and can hardly speak. The kids are doing great except Beck got a sore throat and fever yesterday. He woke up this morning in pain from it again. He has acted normal and hasn't developed other symptoms. I am dosing him with vitamins any way I can and trying my best to disinfect so Bruce does not get it. Anything that could postpone a transplant is on high alert these days.

I sent a list of about 10 questions to our "transplant coordinator" at Lifelink in Tampa. She answered 2 of them and sent me extension #s of other people at Lifelink to call to ask them. I was very irritated. I don't know what her job is if she couldn't answer these questions for us OR go get the answers by emailing the people OR simply walking down the hall to their office. And most disturbing is that these questions were common things that every transplant patient would need to know. Like, What hotels offer discounts for patients?

I have NO TIME to call 10 people on top of everything else it's going to take to plan this out.
Here are the only things I know now:
1. Bruce will be in hospital for 7 days if all goes well.
2. The appointment schedule after discharge if all goes normal is: 3 times a week for 1st month, 2 times a week for 2nd month, and 1 time a week for 3rd month.

We were told for weeks that a "packet" was coming with all information about the transplant. This packet never arrived, Bruce had to call and ask about it 2 times and they would say they were mailing it. The day after I emailed the questions, we get a letter in the mail (one page) telling him what times he has pre-op appointments 2 days before the surgery. That is it- nothing else. And it was dated the same date as when I sent email so they did it because of my email. Said "packet" is either that one page or something they just haven't bothered to mail out yet.

I think I am going to have to make the time to get some things answered tomorrow no matter what. I did what I could on the weekend...I called Tampa General Hospital and left message. A woman called me back in less than 30 min and faxed to us immediately the list of hotels and prices of discounts. She told me that he will go to ICU for a day or 2 and no one is allowed to spend night there. Then he will go to special transplant area and the room has place for me to sleep. I was so impressed that I actually got a call back and real information. Maybe we are going to go to an actual hospital that functions like it should! Boy will that be a change!

Sean is getting his transplant this week! 2 more days to go. What a miracle.

The final countdown

Less than one month now til Bruce gets a kidney. Time is flying by. I know I have not posted in awhile, wish I could say all is well but it's the typical roller coaster ride with Bruce's health. I have been busier with work but still having to plan every day to the minute, juggling things just to get everyone transported and taken care of. I feel like I'm barely getting things done and I'm in constant panic of what else needs to be done. Of course the demands of the holiday season are not helping matters. I still have presents to buy and a million things to do. That would be normal this time of year except I would have Bruce to help and he could actually DRIVE! That aspect is killing us.

Last week, Bruce was very sick. He was throwing up a lot and the headaches continue. He saw Nephrologist on Thursday Dec. 10 because headaches were so bad and we were concerned about blood pressures being so high. Dr. Russo gave him a new blood pressure med. He started it that Friday. By monday he was throwing up and got swollen all over. He did his dialysis that night, but Tuesday and Wednesday were more of the same. Sick all day. Headaches too. I had to go get him from work early and take him to dialysis early 2 days. Dr. Russo saw him at dialysis center on Wed. and called me to tell me he thought he was having bad reaction to new medicine or as a combination with the other 20 drugs he's on. So he called in new one and told me to get it as soon as possible. It's a blood pressure medicine that is a patch. Dr. Russo thought the headaches were most certainly because of blood pressure being too high.

Thursday he was completely fine. Friday he had a little bit of a headache but after I brought him home from dialysis it was worse. Sad for him because Friday was his birthday and it was spent working and at dialysis. Oh yeah, they increased his dialysis time to FIVE HOURS! That happened about a week ago. It is because were not getting good enough clearance. Today we celebrated his birthday...we went out to eat, then he got one of the massive headaches and he had to lay down for awhile before cake or presents. So it seems new medicine is not working OR headaches caused by something else. He has eaten much less sodium and phosphorus this week but it hasn't made a difference yet. Have to wait to see how he does tomorrow and Monday morning, then call Dr. Russo. This is just another typical week of issues ever since he had kidneys taken out and went on Hemodialysis. He is so so so lucky to be getting a kidney soon. We just have to make it until then - make sure he stays out of the hospital and is able to function at work. Only a few more weeks...

Lifelink in Tampa (where he is having his transplant) has been completely undependable and deficient on what they need to do. I'll post about that soon. I am in disbelief.

We have a REAL date

Bruce will get his transplant from Ken on January 14th. They have to go 2 days before that for pre-op. That is all we know for sure now. I can't plan anything until we get a packet of info from Lifelink, then I have about 100 things to coordinate. It's exciting and surreal. We have told Beck but even he seems to blow it off like "yeah right, whatever!"

Bruce saw the Neurologist this week. He continues to have headaches since he cut the anti-seizure meds in half the headaches were about cut in half also. The worst ones seem to happen at work and during or after dialysis. The Dr. said everyone is allowed to have 1 seizure in a lifetime for various reasons (one of which is lack of sleep) and it be thought of as nothing but Bruce's situation was cloudy. He weighed the pros and cons with us of going off meds and getting another seizure or going on a different anti-seizure medicine and risking having bad side effects from that. The big question: Which one would be something that could delay a transplant? He ended up letting Bruce go off medicine completely especially since he isn't driving. He also said something interesting - that Gulf Coast Hospital tends to intibate quickly. Which was the main reason this seizure kept him in hospital for so long. They put the tube in and then took forever to ween him off of it meanwhile drugging him to death to keep him calm. I really believe he won't have a seizure if he stays the same as he is now. I also think the anti-seizure med has so many side effects mentally and physically that he is much better not taking it.

He gave him rx for headaches - Fiorcet, which is the headache med I have taken for 10 years. I needed more so he called both into Target. When I picked them up tonight, there was a note on it that said "same med as wife? is this correct?" I thought it was funny because we know the staff there and they know everything we are on.

For those who don't know yet, Bruce's brother Sean did really well with the surgery. No complications, just a lot of pain afterward. He had same incision as Bruce. Both kidneys were taken out (about 11lbs each). He is recovering at home now and going to dialysis. He is hoping for the transplant at the end of December. Mary's blog is linked on mine "Living with PKD" if you want to read more about Sean.