This is the first and only post Bruce has actually asked me to make (and he told me the title). On Friday his PD nurse Diane (aka Mrs. Claus) retired. When Bruce found out, he was very sad because he liked her so much. We both know that when he goes back on the PD he will be just as well taken care of by Anna the other nurse at the Kidney Institute. They have all been wonderful there and having someone you can call 24/7 when you have a problem is just priceless in this situation. He has been through so much this past year, starting last fall when he was so sick all the time, and the surgery last December and training for the dialysis at home, all the ups and downs with his health in the middle, the big scare when he lost so much blood, and so on....and Mrs. Claus was there helping him through all of that. He said she has a way of making him do the things he needs to do that he is so scared of. He went to visit her on her last day and this is a photo of them. Thanks Diane for everything you did for us!
I haven't posted in awhile because I have been overwhelmed with work, school starting back for Beck and Pre-K for Roan. I think I needed a rest after living in crisis mode for weeks. For Bruce, everyday does get a little better. He goes back to work on Monday and I think that is going to be hard for him because he does not feel well all the time and he has little energy. The day after dialysis is better than the day of. His hemoglobin was only around 9 last week so that could be part of the reason he feels bad. He is still swollen and loses about a pound each dialysis visit.
The number one problem is lack of sleep. He has not slept at night since he went in for surgery. It has been a month now. He is up until 1 or 2am. He gets up early and only has a little nap if any. He has HUGE bags under his eyes which has never happened in all the years I've known him because he always sleeps well. I don't know if he's ever been up until 1am with me except maybe a New Years Eve party. I look at him around 11pm every night and see how exhausted he looks but nothing we have tried has worked. He finally got Ambien after insurance approved it and he took it last night and hallelujah it worked!
Dr. appointment on Tuesday with Surgeon to discuss next surgery for getting catheter back to go on PD, get back on the list for a donor, and see about getting the hemodialysis port out. That could end up being yet another surgery. At least none of them should be as bad as the last.
Bruce has another week and a half off from work to recover. I think he's doing pretty well considering the major surgery he just had, and the fact that he is doing new dialysis with no help from kidneys. He gets hemodialysis on Mon, Wed, and Friday at a center for 4 hours each day. He has now started to drive himself so that takes some pressure off of me. He got his stitches (staples) out on Monday and he says he can move a little better now. They told him not to put anything on the incision just soap and water. It looks like it's irritated to me and my natural instinct is to put some neosporin or cocoa butter on it so I can't even look at it or it makes me crazy. He is not supposed to lift anything and still can't take a full shower because of the temporary dialysis port, so we are washing his hair in the sink with towels wrapped around his neck...brings me back to my days at the Aveda salon.
The diet: He has felt better by actually sticking to the fluid intake limit. We measured it out as 3 water bottles per day. That is total of all liquids including some foods that are liquid. So he can't have any smoothies, most fruits, soup, etc. He used to drink tons of water so this has been a big adjustment. We bought lots of candy to help him not feel dried out. I don't have time to make recipes everyday and I can't seem to find any info on some samples of things he can eat. Of course there are lists everywhere of food items to avoid and what is ok, but I want an actual example of meals, snacks, etc. Something I don't have to spend hours making and shopping for everyday. He was on this diet before he got on dialysis (last fall) and it was a struggle then too but it seems worse now for some reason. The basics are: No high amounts of sodium, phosphorus and potassium. Which eliminates a lot of foods. He is supposed to meet with a nutritionist this week and I told him to make sure they don't just hand him a list!
I think everyday gets a little better. He is still very tired and doesn't have normal face coloring- he seems very pale. After dialysis he is freezing cold. Last time he wore a sweatshirt and socks and turned on the heat in the car when it's 80 outside. Sometimes he gets nauseous for no apparent reason, but that has been the case with him for almost a year now. He can't eat much which is good considering his options. He meets with Dr. Russo next week at center to talk about everything, but right now we know nothing about his blood levels. He continues to take off fluid that he gained after surgery, so that is good. He hates going to dialysis of course, and is getting very bored but when he tries to do things he ends up feeling bad. I think by next week he will be dying to get back to work.
In 2 weeks he sees surgeon again and will get the sign off to get taken off hold on the transplant list. They put him on temporary hold during his surgery and recovery but he doesn't lose his "place". He has been on transplant list for 1 year and 2.5 months. Maybe one day soon it will happen!
I have kept this blog focused on Bruce and his disease, but as you know, the toll this takes on a family is overwhelming. I would like to thank everyone for thinking of me and what I go through in this long process. A friend emailed me something last week that I would like to share...Especially to the several wives who read this whose husbands are dealing with same situation as Bruce, and also to someone very close to me whose husband has courageously battled cancer for over a year now. It was just too poignant not to share. All I could find out about the writer is that it's a woman who wrote a book about her husband with cancer. --------------- "What about the person who is not the one with the illness? yes, how about me? How am I doing? No one ever seems to ask. A selfish thought when I am not the one who has the disease. No, my pain doesn't have a medical label, my fear is abstract, there isn't any medicine that can take it away. It is the pain of sharing my life, my love, my hopes, my dreams, my future with someone whose life seems to be shattered and all those things stolen from him. How am I doing? Well, since you asked, I'm scared shitless. I'm scared to love all the way now, because the loss is too great. I'm scared because I'm real angry and I want to scream out to God, "Are you nuts?" Or to my beloved who is sick, "Snap out of it and make it go away, " or to friends and family who have become distraught over trivialities, "Shut the hell up, you don't know how lucky you are." I'm scared because my own life and love, and hopes and dreams and future are so connected to my love's that I wonder what will become of me. I'm scared because I see and live the reality of what is and still reach for the idealism I've always had and wonder if I'm fooling myself. Maybe you could say a prayer of courage for me, so I can continue on and care." ~Anita Tejedat
Last post I wrote: "We have to go back to the hospital Monday for dialysis... we hope. We have a name and number to call at 9am Monday to get it set up." As with most every aspect of that hospital, it turned out to be a complete disaster.
We were on phone from 9am-12pm non-stop sometimes on both cell phones. We spoke with hospital, Dr.'s office, and a many people at United Health care, but not the exact person in charge of the case. I was told it could be 24 hours before they call back even though they put the case in the computer as "life threatening". Bruce started to get pale, weak, vomiting, etc. So it was even more apparent how much he needed the dialysis. The hospital said he could not come back there and get it because they only do that for patients, but they were not supposed to release him without an appointment for dialysis somewhere. They did not get that because no one got through to insurance in time, but they still sent him home on sat. and now won't let him come back.
Eventually Dr. Burtch (surgeon) sent us to the ER and told us to tell them that Bruce needs emergency dialysis and call him in the OR if they had questions. We got to ER at 12:30. Someone told us that they were going to "admit" him instead of going through the ER. So here we go again..... Wheelchair!
We went to admitting, had to explain the story to person at desk ( this was after I explained it at least 8 times on the phone to various people), they send us to sign all papers and get bracelet and sent to an actual hospital room. Of course they wouldn't let me push the wheelchair because it's against hospital policy and the lady pushing wheelchair just would not let it go until she knew what we were doing there. Both of us tried short answers because we were so sick of talking about this huge mess and both were in total shock we were being sent another hospital room.
Right when we got to room, insurance calls me back and I tell them that they are paying for a hospital room and all of this instead of just getting approval and letting him go to a center. They got approval in less than 10 minutes and we got head of care services at hospital to make the whole thing disappear like he never was admitted (yes, something went right for once!)
The nurses on the floor thought we were nuts because as soon as they came in the room to start their routine, I said "wait! don't do anything! we might be leaving!" Of course we had to tell the story to them and one other person! And I pushed him out of there all the way back to the ER exit in the wheelchair. It's not that I enjoy pushing it, but when they let me do it without question, then freak out like it's a crime, it becomes a joke.
We made it to the center and they took him right away because they had opening. By the time I left there it was 3:30. Our entire day spent trying to get him dialysis all because of bureaucracy!
He had his second dialysis today at 3:30. He has a tv he can watch and he can read but can't talk on cell phone and they officially say no drinks or snacks but when he's there for 4 hours, that seems extreme. Dr. Russo was there today but he won't review Bruce's charts until the Friday visit.
Bruce is pale, weak, very sore, and tired most of the time. He says that he only remembers small parts of what went on last week in hospital which is probably best!
Bruce came home today! Such a relief to be out of that warped place. There was a debate about discharging him since Friday morning. I was unsure he was stable enough yesterday because he could hardly walk on his own, having dizziness, and just didn't want to get out of bed. Today he suddenly got energy and was able to walk around on his own. He had the dialysis yesterday so it probably helped him feel better and get rid of some leftover drugs. It is hospital policy that he has an appointment somewhere for dialysis before he is discharged. The hospital did not get the coordination started with the dialysis center in time and insurance was not going to get approval until Monday, so he was going to have to stay until Monday after he has dialysis at hospital. Dr. Burtch (surgeon) fought this rule all day starting at 7:30am.
At 12:45 we got approval to leave. Papers were ready so all we needed was a person with a wheelchair. We waited for almost an hour and a half for that wheelchair! I went to ask what is taking so long and the nurses decide he can just walk out if he wants to and is able to. They also had to let him leave with 2 hospital gowns on because they made me take his belongings home and he had no clothes there since we did not plan for this today. We walked to the elevators and I started thinking that is was going to be long walk so we see a wheelchair parked near elevators with no one around so we stole it and took off. Perfect ending to this completely insane stay at this hospital. When we were on main floor, with his gowns on and me pushing the wheelchair fast, it really looked like we were leaving AMA.
So Bruce is much happier now and has not even had a nap- because he is so glad to be home maybe? He is certainly in better spirit and moving around normally. There is long way to go before he has no pain. We have to go back to the hospital Monday for dialysis... we hope. We have a name and number to call at 9am Monday to get it set up. Dr. Burtch went to great lengths fighting it out with the head of social services at the hospital all day so maybe it will go smoothly. He is swollen from holding too much fluid but it should get better with each dialysis and keeping diet in check. He has to go on a different diet than before and limit fluid intake to 1 quart a day which includes water in foods. We have to get dialysis place to order some special thing to protect his dialysis catheter so he can take normal shower. There is a follow up with surgeon on Tuesday and the stitches will come out in 2 weeks. The incision is no where near as bad looking as what I thought. It is just stitched (with staples) skin, not scabs or anything. AMAZING. He will see his Nephrologist Dr. Russo sometime when he goes to his dialysis center.
Overall the hospital stay was pretty horrific but most of it was made that way by bad care and organization. The physicians were all wonderful we have NO complaints there! It is just hard to figure out how it can be run so badly. Also Dr. Burtch said at least 4 times about how much infections are in the hospital. Kind of alarming don't you think?
The past 2 days he had significant progress because he kept liquids down all day yesterday and today at lunch and dinner ate solids- so far so good. He was hungry and ate quite a bit. He has discomfort inside abdomen from things starting to move around and try to work again. The incision hurts when he moves a lot but he's not in any major pain. He had hiccups for many hours yesterday and today which makes his stomach hurt. He is very very tired all the time and gets frustrated which is totally understandable especially when things move at a snail's pace at the hospital.
Mrs. Claus has given me comfort by telling me that it is common that dialysis patients can have the anesthesia stay in their system for very long time. On top of that there was the morphine. Which explains why it seems like he's still on it and he has not had much pain. It is still lingering but has gotten much better.
He had dialysis yesterday in the hospital center instead of his room like they did in ICU and he gets it again tomorrow morning. Hopefully he is home by Monday and will be going to the hemodialysis center run by Dr. Russo on Mon, Wed, and Fri for 4 hours a day. He cannot move around without assistance at this time. He is very unsteady and can get lightheaded easily. I don't see how he could get around our house without help and I am not trained on that so I am scared of him coming home too soon before he is able to move on his own.
A case worker came and said he was being possibly discharged tomorrow. She also said that he was going home with IV antibiotics!!?! I had to question that 3 times before she looked it up and said- oh maybe not, is he going to a dialysis center? Doesn't give you much confidence in this place when they are reading charts wrong several times now. I can see the confusion if he was even on any IV antibiotics but he's not. And he NOT going home tomorrow. My best guess would be Sunday.
Today his daytime nurse who gets there at 7 only popped in to say hi to him, then I got there at 8 something and he was not there. She came in to tell me he went to get an ultrasound which concerned me so I asked why he was getting one? (don't know) who ordered it? (don't know) so I just let it go. We talked about how important it was for him to get up and walk and I told her that yesterday only one person came in morning to do it, then nothing the rest of the day. His dad had to get up him and walk him 2 times last night. So she said they would make sure he got up today. Then she disappeared and did not come back. The ultrasound turned out to be just x-rays.
I started asking for her at 11:15 and by 12:15 still hadn't seen her. This is her patient and she had not even taken his vitals or checked his chart and it was 12:15. That's when case worker came in so I asked her who we need to talk to about concerns that things were not happening. She asked so I told her everything that was not being done that the doctors have ordered, then we started to see some results. The CNA came in several times and helped Bruce get in bathroom to take bath, she changed sheets and got him some things he needed. The case worker got his lunch tray changed from liquids to solids because it was after 12 and the nurse hadn't done it yet even though the surgeon at 9am said he could have solids for lunch and he needed to get up and walk! The CNA helped him up but left it up to me to walk with him which I do not feel comfortable with when hes wobbling all over the place. The surgeon said IV fluids to be stopped- also at 9am and it was probably 1:30 before it happened (and I had to ask her about it 3 times). The stupid machine was beeping non-stop but the nurse just came in looked at IV site and left it to beep. After 10 minutes of it I couldn't take it anymore so I went to the desk and asked for our nurse once again. The head nurse came in and took care of it all finally and was very nice about it.
Nurse finally took vitals and she told me they gave him an oral pill this morning of a blood pressure med I had not heard of before and I asked why not Coreg (his normal one) especially since his blood pressure was still 158/97. I told nephrologist that and he couldn't believe he wasn't taking the Coreg. Nephrologist also said he would look at his chart and order him back on some meds he was previously taking before surgery- this was about 1pm. Nurse came back to explain that he really didn't take a pill, it was in IV form and the way they wrote it on chart was confusing. The GI doctor ordered Miralax and Prilosec about 2pm. Nurse came in around 5:30, mom asked about meds and said she would go get it. It was after 7pm before he got ANY medicine.
This kind of thing happened all day long! I really have no idea how things can be ordered my the doctors and not be carried out unless I ask about it over and over. No one came to get him up walking of course! The first day the CNA was awesome, she was in there 3 times getting him up to walk and maybe 10 more times doing other things and a bath. Yesterday was pretty much nothing except one walk and today was a total battle to get what little we did. I just think what in the heck would happen if I or his parents weren't there? There would be no walks, no movement, wrong medicines, wrong discharge plans, wrong food, and on and on.... This is just plain disgusting. Especially since this happened last time he was there 2 months ago.
I know lots of boring details but the hospital sent out a survey last time and it's long so I never had time to fill it all out and write explanations. This time, I will have it in my blog to copy from!
Oh and I got asked to leave the room by an IV woman who said husband's do better without their wives in the room. I was speechless.
I will give Bruce his cell phone back tomorrow but I don't think he will be calling anyone quite yet. If you want to visit him, feel free. He was cheered up by visitors from work today even though he is still a little up and down.
For everyone who has called and left messages, sent texts, comments, emails....thank you ! and I tell Bruce everyday who has asked about him. I have his phone, so if you are calling it, I am checking messages until he is able to speak to anyone. He can have visitors, but he is in too bad of shape to talk right now. I will keep this blog updated and let everyone know when he's up to calls and visitors.
Today was typical day and Slow Central Hospital. He was moved to room last night about 10pm. He was able to get up 2 times today and move around!!!! We had awesome nurses today. I made sure to let tell them "NO MORE MORPHINE!" and why. It is a miracle that he doesn't need any pain meds. He does have a lot of pain when he moves but he doesn't complain much or feel like he needed medicine for pain in a few days. One good thing in this recovery I guess.
BP was high so he was given meds for that late in day. He looked more "with it" and I didn't notice any confusion but he was feeling terrible. He said he felt worse today than before. We could barely have a conversation because he was throwing up so much. Nephrologist said it was becoming too much so they put tube back in nose. This goes down to his stomach and sucks out everything so he doesn't throw up. He was very frustrated with it but his mom explained again to him what it was doing and why it was necessary and he seemed better.
They called a Gastro Intestinal Dr. to consult and he thinks it is a ileus which means bowels not woken up from surgery yet or just not functioning and building up acid in stomach. They did an xray around 3pm to verify but we didn't get results today. He thinks he is not sleeping well so they tried to give him attarax tonight but that is pill that he swallowed with sip of water while they turned off the suction of the tube for 5 minutes or so. There is a chance some of it got dissolved in him. I hope he has a nice restful sleep for once. So hard to sleep in ICU. I couldn't do it.
So tomorrow is for hoping they find out why his stomach cannot hold down anything and get a solution that works. I think sitting up and moving around more is going to be the key.
A lot has been happening but not a lot of progress in health. The tube in his nose was taken out yesterday which alleviated the throat pain. His BP remains stable without medicine- very good! He was given anti-nausea meds but they haven't worked. He cannot keep anything down. He was allowed sprite and jello yesterday and liquid diet today. The tray for breakfast, lunch and dinner all came with tea, juice, jello and some sort of broth or tomato soup. He did not eat anything except jello. I think sprite stays with him better than juice, tea or water. It seems like it is more of a mucous buildup than stomach nausea which we told every dr. and nurse but no change meds for that.
His hemoglobin has been lower than 8 so they have had to give 3 units of blood all together since surgery. Surgeon wanted to hold off on it unless dropped to 6 but Nephrologist did it when it was 7.5 or 7.8. Crazy how the opinions range on everything. We want to avoid the blood transfusions because it makes him a harder match for a transplant kidney. They have upped the epogen shots which will improve the hemoglobin but they take a long time to work. Dr. said if he eats and gets moving it will help.
Dr. Burtch (bruce's surgeon) was not there sat or sunday. He came today and asks Bruce what he's still doing in ICU. I spoke with him and he seemed little pissed they haven't gotten him up moving yet. I have asked them to do it since yesterday morning. Every nurse has a reason or excuse but they all say it would be good for him. They gave him a sponge bath and changed his sheets 2 nights in a row but they couldn't let him just sit up in bed on the side of it for awhile?!?!? I'm not talking about walking down the hall, just MOVE HIM AROUND ON THE BED! Dr. Burtch just shook his head and said we have to get him out of ICU now and get him moving. He assured it would happen today. Nurse put in request by noon but it did not happen and his still there tonight! sigh....
The worst part of this for me is that he is STILL acting like he just came off anesthesia. Without getting into too much detail...he says VERY strange things that make no sense, has no short term memory, gets very confused and agitated, and I can look at him and just see he's not there. Today he looked at me with a really scared look and said "I really don't know what is going on." It broke my heart. I talked to Nephrologist about it and he said nothing in blood chemistry would make him act this way. Phosphorus is high but that is all he mentioned. He blamed the morphine. Dr. Burtch said it was morphine but he thought he was on continuous flow. I told him we stopped that the first night and he has barely had any. Then he said not to worry about it and he needed to get out of ICU. The nurse said that he could possibly have something called ICU psychosis. I looked it up and suppose it is possible. Nurse thought it wasn't morphine because she knows that he has not had ANY all day today and he was even worse mentally than days before. It could be combination of things and once he gets more dialysis and eats, his system will get rid of toxins and left over medicine if that is what is causing this. I know it will get better but it is very disturbing and scary to me.
He had full 4 hour dialysis this morning. They pulled 2.6 liters off of him. I know he lost weight from it but I asked dialysis nurse if he lost weight and she said she didnt weigh him. But I know she did because it is part of her job and I watched her do it 2 sec before I asked. I'm not even going to get into how rude she was! I hope I have time to speak to head of dialysis tomorrow and get new nurse for next time which is wed. I can't take same person sitting in room for 4 hours again and Bruce is really bothered by her.
I hope moving to new room tomorrow helps and hope he can get some food or drink to stay down. I am a postive person but I am becoming very frustrated and might get kicked out of hospital before this is all over.
First of all here are the kidney photos; WARNING!!! DO NOT CLICK if you get sick at the site of body parts. It's pretty graphic. But very interesting to me now.CLICK HERE for PHOTOS
Not much progress - very frustrating. He can't be moved out of ICU until blood pressure is stable because it is still too low unless they are giving him IV medicine. He can still only have ice or sips of water. His throat is killing him and he complains about it all the time. He is still out of it and starting to get very pissy.
They say this is normal for such a long surgery and the fact that they moved his intestines 2 times to get kidneys out. They have to adjust and start working again. I just called nurse and mentioned trying to get him moving a little at least to sit on side of bed. The surgeon said they would have him up the next day so maybe he will make it happen if nurse does not. He had the hemodialysis today for 3 hours. It seemed very normal to me even though its different than the PD. Bruce was about to come unglued the last hour though because the machine was so noisy and it was right in his face. Normally noises don't bother him. They only cleaned the blood, they did not pull any liquid out of him because it would make his BP drop more. He is starting to swell especially his hands. I've never seen them look like that.
He is not in pain from the incision yet because he has not moved at all. He is hooked up to everything: small oxygen tubes in nose, large tube in his nose in case he starts to vomit badly from anesthesia, heart monitors on chest, IV monitor in artery to monitor every heart beat blood pressure, blood pressure cuff, IV with fluids and the blood pressure medicine or antibiotic, legs wrapped in things that inflate every few minutes, pulse and oxygen thing on finger...
In icu now nothing to do but give ice chips when they allow it.no food or drinks until stomach has "woken up".
Yesterday we got here at 5am surgery started at 7:30 and ended at 11:30. I waited w both bruce's parents and my own. We were told sugery was only 2 hours so I got worried when it took so long but surgeon met w us after and said it all went well with no problems. We have photos of the kidneys which I need to find way to post on here where it is link to click on because I know most people can't handle seeing it. Had I not done so much internet searching on it, I would not be able to look at them. They said they weighed about 7 pounds each but when they weighed bruce last night he had lost over 30 pounds.
Last night was little rough because couldn't get blood pressure up. Still waiting to do dialysis because of that. He's very very out of it and has wires and tubes everywhere. He's dehydrated but can't let him drink and can't push fluids cause no kidneys and no dialysis to get rid of fluid. He has a huge bandage on incision but stomach bloat is gone! Its a major difference. I keep telling him how happy he's going to feel when he wakes up more. He is so loopy though, he asked me this morning and yesterday if they took the kidneys out yet! He has asked me if its raining 3 times and its not plus he couldn't hear it if it were. He has asked for drinks non stop and I feel bad I can't give him anything. I know they don't want him to get sick but its been a whole day now. They reduced the morphine last night to help get bp up and he doesn't seem in pain but he hasn't moved. They said they need to hear bowel sounds before they give food or drink so I think they need to wake him up and get him to sit up and get this going! Of course I'm sitting here giving orders again ;) but last night I can say we had an awesome nurse who really made all the difference. Icu was a total mad house and SO loud I left at 11:30 and came back at 6 and all is quiet now.
Will go home for nap- I hope and try to find way to hide/post the kidney photos.typing on blackberry now and I have to keep getting up for some alarm going off or bruce panicking.
Thanks to everyone sending msgs will post more when I can.
My husband has polycystic kidney disease (PKD), diagnosed at age 17. He just turned 40. Five other close relatives also have PKD. We have two boys-ages 8 and 3.
Currently he is on transplant list and starting dialysis.
I hope in writing this I can help someone going through this same scary process. I could not find much information about it and there is SO much to learn and deal with!