Time to close this blog (for now)

Thank you for all of your well wishes and comments.
It's time I removed this blog.

Regards,
Brian

Cary Nephrology Associates visit 2nd week

Tuesday, saw Jason Eckel, the fourth doc in the group whom I'd not met prior. Again, for those of you who follow the numbers:

Creatinine 2.34, good news indeed as ~50% of last week's number.
BUN 51
Eosinophiles 12% light reading for you, heh, heh,
http://en.wikipedia.org/wiki/Eosinophil_granulocyte

Potassium still a tiny bit high. Dr. Eckel suggested I increase salt intake to reduce potassium. I salted some vegetables at a meal, no way, couldn't tolerate the saltiness.

I discussed the itch episodes I've experienced. Might be some vanco running around loose. Prescribed a tapering dose of prednisone, 40mg/day 2 weeks, 30 2 weeks, 20 2 weeks.

I had itch episode in T.J.'s parking lot Tuesday. Fortunately, we'd just bought more Eucerin anti-itch cream in pharmacy. We stopped at T.J.'s for groceries. Sun had come out full and temp had climbed, when I stepped out of car into sun, I started to itch all over. I ripped off my shirt had GJ appling creme to my itching back. I'm so skinny, my pants slipped off my hips so there I was in parking lot in skivvies with pants around my ankles screaming for more cream. Who should drive into the adjoining parking place ... Nancy Knight ... to observe the whole scene.

Scheduled next visit four weeks out. Will be no blood lab until then so no stats.

Cary Nephrology Associates vist 2nd week

Tuesday with Jason Eckel, the fourth doc in the group whom I had not met prior. Again for those of you who follow the numbers:

Creatinine 2.34 very good news indeed, down 50% from a week ago
BUN 51
Eosinophiles 12%, thinks this is still too high (your light reading, heh, heh, http://en.wikipedia.org/wiki/Eosinophil_granulocyte).

Potassium still a tiny bit high, suggested I salt my food a bit.

Discussed my itch episodes, thinks maybe some residual vanco running around. Prescribed a tapering prednisone dose over six weeks. I had itch episode in T.J.'s parking lot Tuesday after I saw Eckel. Fortunately, we'd just bought more Eucherin anti-itch cream in pharmacy. When I emerged from car and sunlight struck me, my back became afire with itch. I ripped off my shirt and had GJ appling creme to my itching back. I'm so skinny, my pants slipped off my hips so there I was in parking lot in skivvies with pants around my ankles screaming for more cream.

See him again in four weeks. No blood lab for four weeks.

Dialysis Catheter port removed

Wednesday, visited Capital Nephrology Associates across Raleigh near WakeMed Main, to have catheter removed. Nice folks, painless procedure. This signals the end of a need for dialysis without the reinsertion of a new port.

Cary Nephrology Associates visit

today. For those of you who follow the numbers:

Creatinine 4.4
BUN 66
Hemoglobin 9.3
Eosinophiles 10%

Potassium still a tiny bit high. Dr. Lee asked for an additional blood draw to verify. Says he'll schedule dialysis catheter removal Wednesday nonetheless.

Also says he'll schedule appt w/John Engemann, Raleigh Infectious Disease Associates, to pursue spine infection while I schedule Duke docs for same.

I'm Discharged!

Dear followers of my crisis:

At one time a few weeks ago, I thought this day might never arrive. Between then and now, I wavered between despair and hope, I'm happy to report hope has won out. I was discharged Saturday at 1 PM. Still have some residue appts with kidney clinic, infectious disease clinic, cardiologist, PCP, but I'm confident now that I will do this and live thru it.

Sons, Friederike, and I think this is pretty much the end of this blog unless something unravels. Thanks to all of you for following my travails.

Love, Crash

last if not penultimate hospital post

Ed's scheduled to be released momentarily.

His creatinine plummeted a full point on today's bloodwork, an excellent sign of recovery!

The paperwork is prepared; when Jeanne arrives to pick him up they are to call the "hospitalist" who will sign or facilitate the discharge, wrapping up the details.

They will leave with the catheter in place. Monday Ed's blood will be drawn as outpatient, then Tuesday they'll have the results and if his levels are still low (hopefully still dropping) they will schedule the removal of the catheter.

I am going to invite Ed to be a top level poster on the blog so, he may post his typical, chronologically correct, recollection of the events and experience. Then again, he may just crawl into bed. Only time will tell.

Thanks to all for the concern, care, wishes, thoughts, vibes, and stuff.

As of 2PM, he's home!
I called and they had just walked in the door. Since it's Saturday the hospital is low on staff and discharge is not as important as caring for the sick, so they take their sweet time.
Regardless, Ed is out of the hospital (for now).

Friday PM

I forgot to mention this morning:
Ed is concerned what is being done to prevent blood clots - he is not on coumadin since the new catheter was placed. Dr Lee explained that having poor "kidney blood values" also makes the platelets slippery, meaning the clotting is somewhat reduced and for now Ed should not worry about it. After the catheter is removed - Ed can go back on his one daily Aspirin. This sounds like a very generalized statement and explanation, but not
Ed still has itchy skin and does not feel that he can concentrate really well. Not back to his computer wheeling speeds. Dr Lee said that high phosphate values can cause itchy skin and we already heard that they can effect the mind. That should be a reminder. Ed is not healed just because he is allowed to go home. We are all happy that he is no longer critically ill - but until his blood values return to a better range he will still feel the effects. His hematocrit is still low, so besides his concentration, he will also get tired easily. Please keep that in mind as you visit and call after he is home. This is expected and should not be reason for concern and we all hope that he will steadily improve. I am sure this will be cause for some frustration for Ed, but we need to remind him and ourselves that he is not there yet, but getting there.
I was asked how Jeanne is doing through all this. Jeanne is a strong fighter and takes everything with loving strength and patience. She is focussed on what needs to be done and convinced she can do it all. I agree, she can; but sometimes I wished she recognized that she does not HAVE to do it all and does not HAVE to do it all herself. We love her.
Looking forward to tomorrow - Friederike

Friday -morning 4-29

Ed was up and dressed and just finishing his breakfast this morning. Then he declared he was still hungry and ordered more outmeal and a banana. Everything is on track for a release tomorrow. :)
Todays values:
Creatinine 5.62 –no dialysis!!
BUN 71
Hematocrit 24
Eosinophiles 14
Jeanne joined us and Dr Lee came at 9:30 and took his time talking to us. Ed is scheduled to go home tomorrow if everything stays well
Here is the plan:
1) No dialysis today (Friday) since the creatinine is slowly decreasing
2) Daisy (dialysis nurse) is supposed to flush the catheter and tape it in place so Ed can go home with it.
3) blood test tomorrow (Saturday) – if creatinine is holding or decreasing then Ed can go home. Tomorrow’s nephrologist will be Dr Eckel.
4) Appointment for blood draw on Monday at Cary Nephrology clinic
5) Resultes expected Tuesday – based on the results the clinic will make an appointment to have the catheter removed. The removal will be at a clinic close to Wake Med Raleigh
6) Appointment with Nephrologist in clinic at the end of next week
7) determination of weekly/monthly clinic visits to keep monitoring values. It may take a while for them to drop below 2 (that is the goal)
8) Dr Lee is trying to get an appointment for Ed with Dr Engeman (Wake Med Infectious disease) ASAP, but Dr Enegeman is out this week.

The other outstanding questions were:
--Procrit ; Ed has been getting it with dialysis. He received another dose yesterday (Thursday)and is scheduled to receive another dose tomorrow (Saturday) before going home. If future Procrit is necessary, then Ed will have to be referred to a hematology clinic.
--Digoxin – This is Ed’s second heart medication - Do not take until the creatinine is down to 2 and then only after consultation with cardiologist
--continue to take TUMS 2 with every meal . that serves as a phosphate binder. Avoid Phosphate rich foods dark sodas, chocolates etc; – but do continue eating meat etc. .Good nutrition has priority, worrying about phosphates is secondary.
--Risperdal – discontinue. Dr. Latif may come by this afternoon (Friday) to discuss.
--elevated eosinophiles – The tryptase results are not back. Needs to be discussed with infectious disease clinic and/or hematology clinic.
That's it for today - Friederike

Thu - April 28 10:40

Thursday morning – 9:45
Visited with Ed this morning. Good news first then I get into the rest. His creatinine is holding, so no dialysis today. Last night there was some confusion what the creatinine was (had 8.6 written down). Checked with the Dr today and his values are:
Monday 25th: 8.04 –then went to dialysis
Tuesday 26th: 5.67
Wed 27th : 6.18 – no dialysis
Thu 28th: 5.97 – no dialysis.
Dr. Lee came in and was very positive about this holding/decreasing trend. He may release Ed to go home tomorrow or Monday. We asked if Saturday would be an option to make sure the trend is holding before they pull the catheter out. Dr. Lee will be back tomorrow morning to make those final decisions. Jeanne and Ed need to think and talk if there is any help they would like from a transition place or home aid. Ed needs to focus on strength and fitness.
The result from the tryptane test is not back yet. Eosinophiles were not measured today, but Dr. Lee ordered it for tomorrow. Ed’s hematocrit is still low (25-26%) ( I think >35 is desirable). That is also expected with kidney problems. The kidney makes EPO that stimulates blood cell production. Dr. Lee may give him some Procrit, but that needs to be rediscussed tomorrow. Some people do 2 Units of blood transfusion – but that is not called for in Ed’s case he said.
The skin on Ed’s toe cracked and started bleeding. His skin is still very dry. The nurse cleaned and bandaged it. There is a little bit of fluid in his lower left lung and walking and deep breathing should help to clear that up, but it should be watched.
Follow up for back and infection problem/history: Dr. Lee will help Ed to get an appointment with Dr. Engeman at Big Wake Med in Raleigh, who has trained at Duke and has access to all Duke records. It would be a good second opinion and follow up in a non-teaching setting. The goal is to establish history and status – is the infection still there, how can it be monitored, what needs to be done about it. In parallel Ed will try to get an appointment with Dr Isaacs to follow up on the spine issue.
Follow up for kidney can be done at Cary clinic also manned by Schmidt, Godwin, Lee, and Eckel (Eckel is fourth in the group we have not met him yet). Ed would go there Monday and often to get labs drawn, but they say they have no place there to do cleaning, flushing, maintaining of the catheter. If Ed goes home with the catheter, then he could make an outpatient appointment at the hospital to have it removed later next week.
We are thrilled that the going home plan is materializing.
--Friederike

Thurs April 28, 2011 10AM

Ed's Dr. was visiting when I called, so I waited a few minutes and called back.

Today's his third day forgoing dialysis and his Creatinine has been 5.9 for a few days in a row. While still high, the consistent 5.9 means the dialysis is not indicated.

Ed may be released within the next day or two, short of any spike in blood levels.
His kidneys will continue to heal on their own and he'll need plenty of outpatient treatment to monitor his kidneys and their health, as well as to determine whether or not he'll need to remain on the various meds he's presently taking.

He's being referred to an infectious disease specialist to address the P.Acnes causing pain in his spine.

Friederike was in the room, hopefully she'll update us as well.

Status Wed April 27

This is mostly a no-update, update. I spoke with Ed this am and he sounded good; clear, aware, awake, cognitive, etc. No dialysis scheduled for today. This coming Friday marks the end of week three. His numbers are still high. I spoke with my personal dr. yesterday and I mentioned Ed's situation; he told me that Vancomycin was a tough drug, very hard on the body. Ed was not told this, and his blood was not monitored throughout the course of treatment (4+ weeks). This only adds salt to the wound, knowing that it possibly could have been avoided. At least let this be a lesson to us all, if you know of anyone going on Vancomycin, be sure to ask for regular blood work and have kidneys monitored.

No other changes as of this morning, I'll talk to Ed later today.

EDIT: Moving text from one of the comments to top level, Friederike says she believes that Ed's blood was monitored weekly while taking Vanco. I'll have to check w/Ed.

2PM Tuesday 4/26/11

2PM Tuesday and it is time for me to leave. This morning, Ed and I wheeled/walked to the outdoor courtyard to play cards. We chose a slightly more complicated game - Gin Rummy. It started to rain, so moved indoors to the atrium on the 2nd floor. We played about 4 hands before we decided to head back to the room for lunch. Jeanne was waiting back in the room, but had to leave soon after for a dental appt. I absconded to the ground floor for lunch and unbeknown to me Crash followed soon after in the wheelchair alone. I was returning to the room, when I met him in the hall by the elevators. We returned to the room. I could go on, but it's all pretty mundane. I guess that is good.

Ed won all but one hand of Gin. He is 80-90% of "normal" Ed, I'd say. Significant improvement from 4 days ago. I'm off for AA and Ed deserves a rest.
-Stuart

Tuesday April 26 as of 10:30 AM

I went to Wake looking forward to breakfast with Ed, and finally found him in his new room (369) dressed in shorts, shirt and shoes and just finishing breakfast. Looking bright and thinking well. He was woken up at 6 AM to be moved to the new room. Ed said he did not have too good of a night, strted thinking about past and future and getting a little depressed if he would make it out of that hospital alive. He did not care if he needed continued dialysis - just wanted to make it out and not die in the hospital. After talking for a while, his new kidney Dr. came in (Dr. Lee (spelling?)) and spent a good amount of time with us. Ed had seen him yesterday and felt that Dr. Lee was not as optimistic, but today it was very clear that he is optimistic and after the long visit, Ed said that he did like him. He spent some time explaining which other causes and factors and differential diagnoses and outcomes he was considering - very thorough it seemed to me, but understandably that can be confusing and taken as "you are very sick". Dr. Lee was very clear that the best case scenario was that the kidney recovers enough to pull the catheter and send Ed home - the worst case scenario was that Ed would be sent home with outpatient dialysis 3 times a week. Ed liked that clear cut statement. Dr. Lee has seen patients recover even after a few weeks of outpatient dialysis, but the longer you are on dialysis the smaller the chances. To answer Karen's earlier comment: Yes they are aware that dialysis prevents the kidney from trying its best, so they like to keep as many days as possible between dialyses to be able to see if the kidney recovers. Todays values were improved, so no dialysis tomorrow unless the values are bad tomorrow morning.
If Ed wants the Lidocaine patch back then he can ask for one - the Dr approved the use as needed. Ed needs to increase his protein levels, blood albumin is only 2. something and needs to be in the 4's. So Ensure with every meal and protein rich foods - even though that seems counterproductive to the kidney function. Ed's swollen feet are probably also a symptom of the low blood protein levels. So when he is not walking, then he should be sitting with his feet up or laying down. Walking and PT is encouraged.
The Dr. ordered another blood test (T-something sorry I did not write it down). Essentially, the specific white blood cells that are elevated during an allergic reaction are Eosinophiles. Ed's counts were high at Duke with the Red Man's syndrome, and that is a known measure after a reaction to Vancomycine. However, his levels are still up (15% instead of 5%) and that is unexpected considering the vancomycin should be out of his system. We talked about the crystals forming in the kidney and Dr. Lee said that is a possibility, however there were no elevated Eosinophiles in the urine, just in the blood. There is something called "Mastocytosis" when the mast cells (eosinophiles belong to that group) are elevated. Dr. Lee described it as the vancomycin setting fire to the system, but now the fuel source is gone and for some reason the glow keeps gowing independently. This T-blood test supposedly is not elevated after vanco but may be up after other reasons for high Eosinophiles. Sorry, I have not looked any of this up - but try to repeat the converstation this morning.
Dr. Lee agreed at this point kidney biopsy would just satisfy curiosity - not have any effect on treatment - so will not be ordered at this time. He also explained that the blood pressure medicine is needed because the kidney is involved regulating blood pressure and because it is important for the blood to arrive at the kidney with a certain pressure. Too low and the filtration does not work well, too high and the kidney can be damaged. Ed is currently taking 2 different blood pressure medications, but Dr. Lee reduced one of them to be taken only if the blood pressure is above 160.
Ed has a great nurse today til 3 PM "Norma" and they are getting along well. She will help him later to get a shower and make sure the port is well taped with plastic. Ed really wants to wash his hair.
I left at 10:30 AM and Ed was laying down for a nap – I can understand that he is tired after all this talking and thinking. Overall I think Ed needs to keep his mind busy now to regain control and he hopes to be able to read the computer screen soon. He got new glasses with reduced prescription strength in his right eye after the cataract surgery, but he has to take time to get used to them.
--Friederike

10:30AM Tuesday 4/26/11

The numbers this morning (from Friederike's notes):
Creatinine 5.67
BUN 43
Phosphate 6.1
Potassiium 4.3

He is encouraged to keep eating protein.

Just arrived, but so far Ed seems a bit down cognitively compared to yesterday. I am leaving today at 2:15, I will post again before I depart.
-Stuart

7:30AM Tuesday 4/26/11

Ed called home early this morning to say he was moved to a new room - W369. He said his room was needed for a more critically ill patient. His direct phone is now 919-350-6660.
-Stuart

6PM Monday 4/25/11

I arrived back at the hospital 4:30ish, just as Ed was returning from dialysis. Dialysis was not as difficult as usual, not painful, just boring. For you numbers geeks, his creatinine was 8.04 and BUN was 67 prior to dialysis. Ed was as settled, calm as he has been since I arrived. We asked the nurse if Ed could go by wheelchair into the outdoor courtyard, she inquired and said yes. Ed and I went, spent almost an hour enjoying the sun, flowers, fresh air, and playing cards. When we returned to the room, Nancy Knight was there for a visit.

Another note: Ed says the kidney Dr. said urine production is good,, but toxin removal is not so good. Dr may consider trip to "Big Wake" for a kidney biopsy. TBD.

That brings us to the present. Ta ta.

-Stuart

Status Mon April 25 Morn

My phone rang this am while trying to prepare breakfast for Neil and it was Ed calling. Knowing that I'm up early, I guess he was feeling chatty and he knew I would be up. He was clear and told me a story about his evening's sleep as well as the prior eve and his game of cards.
He's scheduled for dialysis today. Looks like they've settled on an every other day schedule unless circumstances call for change. He's up and relatively active, wanting to walk further; these are all good signs of a progressive recovery. I won't be happy until he's healthy enough for discharge and outpatient treatment, but I'm worried that between the kidneys and his back, he will never be the same, maybe we can hope that he'll be better for it somehow.
Ed is going to have to hire household help and delegate many of the projects he presently does himself.
Only time will tell how complete his recovery will be and he still has a collapsed vertebrae that needs to be fixed. I find it hard to believe his back Dr.(s) haven't even checked in on him at WakeMed. Maybe they've called and it's too much to expect them to travel the 15 minutes from Durham/Duke to Cary to see if they've killed him with the Vancomycin, no inquiries that I'm aware of.

We're now officially counting hospital time in weeks instead of days.

Monday 4-25 late post for 9AM

When I arrived this morning around 9AM Ed was in his Chair and half way through his breakfast with the TV on and doing well. Turkey bacon again - no comments on the taste except that pork bacon would probably be better. He ate everything in cluding corn flakes. He said he had a short night as the diuretic made him have to call the nurse around 4AM. Then they needed a new armband for him since his barcode had worn off (looks to me his time in the hospital is expired and he should be on his way home soon). Then his IV needed retaping etc - so around 6 AM he decided to get up, put on his shoes and read an article. He said it was slow, but I was thrilled as his ability to concentrate and comprehend is so much better. After breakfast he decided to go back to bed and get a good nap - I don't know any news on the blood values only that dialysis is scheduled for the day. - Friederike

10:30AM Monday 4/25/11

Ed was asleep when I arrived at the hospital. He is scheduled for dialysis at noon. He called the house earlier, requesting a few items - t-shirts (w/pocket) that button in front, skivvies, and toenail clippers. He sounded good on the phone. He is wanting to wear civilian clothes, which is an indication to me of a desire to leave the hospital. No official word still on that. I haven't seen any Drs today, so I have no data for the blog.

6PM Easter Sunday 4/24/2011

When we arrived, Ed was watching NBA playoffs (Celts/Knicks). Jeanne turned off the TV without asking and Ed was pretty angry about that. Ed settled a bit, ate dinner pretty calmly. As usual at dinner, Ed puzzled over the spatial relationships between his chair, his position in the chair, the wheeled cart, the tray, the plates on the tray and the food on the plates. Too many variables! After dinner Ed walked two laps around the unit. We stopped in the atrium along the way, arranged too chairs and a table (not too complicated), sat and played cards (21). The game was just about at his cognitive limit. The fewer cards to add together, the better!

I asked Ed if he wanted to add anything to this post.

Ed says, "In 2008, Stuart coined the phrase - 'don't ever get this sick.' Would that I had paid attention at the time, but learned the sorry lesson that I now learn."

-Stuart

Get Well from OhMeloVelo

From Ed - Western Wake Med

12PM Easter Sunday 4/24/11

I arrived at the hospital around 10AM and Ed was visiting with Rand Neyland. Anne, a hospital volunteer, dropped by to visit (along with her dog, Bitsy). Anne told some jokes and so did Ed. Ed is lucid and is having a good day. Rand and I went with Ed for a walk around the unit (1 loop). Ed returned to the room and sat for a while. Rich Giroux stopped by at about 11:30. Ed started to get testy and independent, wanting things just his way (sign of recovery?). He insisted on putting on a pair of shorts for his next loop, after which he declared he was tired (still waiting to see if he will feel strong enough for a second loop).

I took a video of the visit with Anne and the start of the walk. Will try to post later.

Saturday 6PM 4/23/11

A CT scan was ordered and executed earlier today to rule out mini-stroke or other brain issues. At 4:30PM, neurologist Dr. Gabr visited and reported that his CT was unremarkable, no evidence of stroke, tumor or seizure, his issues are metabolic. She diagnoses that Ed has delirium, which typically exhibits a sinusoidal pattern, as we are seeing. Ed's Risperdal had been reduced to 1x/day today and they will return to 2x/day tomorrow. Dr Gabr orderd an MRI for a more subtle structural brain scan. Which could be tonight or tomorrow. He would need to be administered Valium or Ativan (Loraepam) for sedation. I had reservations, considering the sedation required, which could set him back further. Dr Gabr also ordered Thiamin (B1).

At 5:40PM, Dr Godwin returned. We discussed the MRI and he said he would cancel the order. He thinks the MRI results would not change the treatment plan. Ed is making plenty of urine. Dr Godwin recommends Ed get out for a walk this evening.

-Stuart

Saturday 11:45 4/23/11

Ed has rallied after a rest. Friederike asked that I mention that he has been receiving a lidocain patch each day at 10AM (12 hrs on, 12 hrs off). They removed the patch today to limit the meds in his system with his confusion. The dietitian visited to go over the next few meal and he was understanding well and able to express his preferences. He reports that the turkey bacon from yesterday's breakfast "tasted like a telephone pole."

-Stuart

Saturday April 23 11:20 AM

8:40 AM Ed was waking up when I opened the door but it took him about 30 minutes to really wake up. He was frustrated because he did not feel as good as yesterday. More confused and out of it. He did eventually sit up and told me that Stuart had planned some card games for today. Ed ate all of his breakfast. Dr. Godwin (nephrologist) came by during breakfast. Creatinine at 7.9, but since Ed is making good amounts of urine he did not order dialysis today. The white blood cell count is very good and normal. He encouraged Ed to drink lots and eat well. At the end of breakfast Ed was not doing so well anymore. He could not get the words he wanted to say out of his mouth. He was trying hard, but only every 5th word was a real word, and he had trouble holding and putting down his coffee cup. He laid back down to sleep. Stuart came in and Jeanne is on her way. The nurse called Dr Godwin and Afridi (Hospitalist) and both will be back by to see him to re-evaluate. In the meantime they started a drip with saline, took his glucose levels (189 - a bit high). In addition a neurologist will come by and see him tonight. All to make sure the confusion does not have another reason than the low kidney function. Right now Ed is sleeping.--Friederike and Stuart

Friday 4-22 8 pm

Stuart just arrived.
Ed is a little tired but grateful. We just talked to Dr. Godwin, the leg catheter is coming out tonight. Tomorrow's blood values will determine if dialysis is needed. May not be necessary. Ed still has good urine output.
Good night
Friederike

Friday 4-22 2:50 PM

Just testing if I can post now.
Just talked to Ed. He was walking out in the Hall when they heard the phone ring and hurried back. He has been resting and sleeping (he called it "being a slug"). He reports some difficulty with spacial relationships , like finding food on his plate or adjusting the chair in the right way , but he acknowledges that his visitors seem to have some of those chair adjusting problems as well. He sounded just as good as this morning.
I will go back this afternoon and show him the blog entries and comments - so if you post/comment - he will definitely get to see and read it.
Friederike

Fri April 22

The following was mailed to me by Friederike.
She's been to visit Ed on a daily basis and I've invited her to post at the top level but until we get that setup, she's forwarded the following post via email.
Her commentary and level of detail have been excellent; Thank you Friederike!

This morning Ed was happy and energetic and realized he was just feeling so much better and with it. He knew it is Good Friday and did not feel like his tongue was all tight up. We had breakfast together and he devoured the turkey bacon. He had slept well and his “head in the bucket feeling” had gone away overnight. His voice was clear and strong this morning. He even wanted me to open the window shades to get more light. He washed his face standing up in front of the sink and combed himself and then we went for a walk in the hallway. By 10:30 he was getting understandably tired, his mind seems better, but his body still needs to recover. His creatinine was 5.something and I was thrilled. I think in the past week it had been between 7 and 8 even with dialysis. If this is due to kidney recovery or the pizza last night or the frozen plasma he got yesterday– I don’t know – but it is great to see some progress in the right direction.

Friederike

Fri April 22 9PM

I didn't have time to mention this in the last post; I wanted to look up reference on wikipedia. Ed was complaining about Patulous Eustachian Tube when I spoke with him last night, he couldn't finish the conversation.


Just spoke with Ed this AM and he sounded like the old Ed we all know and, well you know, kind of put up with. He was 100% clear and lucid, speaking fluidly. I cannot believe the difference! Considering this has just changed since I saw him the day before yesterday, I have to guess that it's the risperdal that he's been given. He's aware of the difference and acknowledged the sudden clarity.

I just hope the additional dialysis can help the kidneys heal as well.

Thurs April 21 6PM

I've just returned from Raleigh, called and got some info.
The anti-psychotic they're giving Ed is called Risperdal. I know he (the shrink) was talking about a large enough dose to be therapeutic but small enough that he doesn't fall asleep.

He was taken for dialysis first thing this am, then transported to a different hospital (my understanding) to have the new catheter installed. The old catheter was left in place because there's a long weekend ahead and they didn't want to have any trouble in the event the new catheter fails, they can always use the old one.
I guess they'll remove the old one on Monday.

more updates as soon as I can.

Wed April 20 7PM

Ed had a big crowd in his room this evening, several friends and relatives.

The Dr. is going to relocate the catheter from his groin to his chest because he's not recovering fast enough and they anticipate his needing more dialysis. They've been skipping every other day for the past few days. After 3 hours of dialysis today, he's scheduled for more dialysis again tomorrow.

A shrink stopped by and prescribed an anti-psychotic to attempt to help with his confusion, which will be a day at a time, as needed, if the script works.

Wed April 20 noon

Ed was scheduled for dialysis this am, so we didn't bother coming to the hospital until 11am, but he's not yet been taken for dialysis. The nurse is busy so I can't get blood work stats from her, but I will later.

This is my last day in NC, driving home tomorrow. Stuart will be coming in for a few days, arriving Fri eve. He can update the blog too.

I'll post again later when I have some data.

Tues April 19 Noon

Stopped in to visit this am, Ed was tired so I let him sleep.
The nurse gave me stats from this am blood work; Creatinine: 36, BUN: 7.24

Improvement is slow going, I see no change on a day to day basis. Ed is clearly experiencing his mortality and the best metric is contrition. On/off the wall comments.

Dialysis is scheduled again for tomorrow, which he finds very painful.
He is generally in quite a lot of pain because of his collapsed vertebrae, but he cannot be given any pain meds other than motrin because of his kidneys.

We're moving him around, on one side, then the other, occasionally on his back trying to watch tv, but there's 99 channels of shit on the wall, nothing intelligent, nothing worth watching; he can't even find any sports worth watching.

Please leave a comment, I read the blog to Ed while I'm here visiting,
At least while I'm in Raleigh I can let him know who's checking in,

Blogger stats shows 650+ page views in the past couple weeks.
Thank you all

Bloodwork

According to wikipedia the reference ranges for kidney function are different for males and females.

The Creatinine ranges from 0.7 to 1.3, his was 8.46 as of this AM, however that is prior to dialysis.
Bun ranges from 5 to 35, his was 47.

He's just returned from dialysis so tomorrow's blood work will reflect any improvement.

Presently he's very lucid and following along as I type this.

Ed says "thanks for all the well wishes"

Sun April 17th 4PM

I'm finally here in Ed's room after 6 hours in the car.

He's immobile, can't roll over, sit up, without experiencing extreme pain. He's still suffering from the vertebrae pain that started this entire affair.
No dialysis today, giving the body a chance to perform its own bodily functions and test the status of his kidneys. The Dr. is planning a few hours of dialysis for tomorrow so this process slowly plods along.

The nurse just came in the room and  gave me some stats.
His Creatinine is 7.53, BUN is 36, was 33 yesterday.
I don't know the normal ranges, I'll look it up later when we're at E&J's house
Their power was just restored, home is still in place.

I took a photo, but we'll wait for him to recover and put photos on his own personal blog(down at present).

Sat April 16 6PM

No real update on Ed; there are tremendous storms in the Raleigh area. Jeanne is without power, trees are down in the area, and a couple of houses have done the wizard of oz disappearing act, gone due to tornadoes.

I was planning on heading there tomorrow eve or Mon AM but I'll get up a leave for Raleigh first thing in the AM.

Sat April 16 9AM

 Spoke with Ed this am. He's still recovering slowly but surely. His blood work wasn't done this am as I had been told it would, so I don't have kidney function results.

His hemoglobin and other blood stats (guess they check that dialysis causes no damage) were good.

He was lucid but no better than yesterday, says he's being attended to by the "Nurses Aides From Hell", they keep asking these questions that he can't answer and make no sense to him. I had to explain the questions are just a daily metric measuring his mental acuity. He kind of understood, but nonetheless is suffering the process, the worst of it is that he doesn't understand the process. If you know Ed, you know how much angst this causes him.

Fri April 15 Noon

I just got off the phone with Ed. He's been moved out of ICU and he had just returned from dialysis.

This was the first call we had where he answered the phone by himself and was 99.9% aware. He was lucid and knew about the blog and all the well wishes. He sends his regards and thanks for the concerns.

Looks like he'll be doing better each day, so far so good, no surprises...

I'm leaving for a friend's house in VA so I'll check in on him later today and then travel on to Raleigh either Sun night or Mon morn, at which time the blog will include photos (if appropriate).

I've added a few others permission to post top level comments on the blog, maybe we'll have more commentary from people who've already visited Ed.

Regards,
Brian

Thurs April 14, 2011 11PM

Just a quick note, I'll speak w/Ed later today.
Jeanne called and said that he sat up in his chair and had a very large lunch yesterday.
A ravenous appetite is always a good sign.

More later, thanks to all

Update: 2PM
Ed was not given dialysis today. Apparently his numbers are good enough that they need to skip the dialysis and see if the kidneys start doing their job on their own.

Another big lunch and back to sleep.
I asked him how he was feeling and he answered "I don't know".

Wed April 13, 2011 2PM

Just spoke with Ed and Jeanne. He had his dialysis this AM. He fed himself lunch, a good sign in terms of strength and coordination. His numbers (BUN, Etc). are up and they are planning to move him out of ICU and into a regular bed later today.

Very apropos, today's column in the NY Times, hospital's being a bad place to go when you're sick.
Good read (Dowd usually is). Giving Doctors Orders

Keep sending those thoughts, concerns, etc. We are glad to have the support.

Tues April 12, 2011 4PM

Just spoke with Ed as he was returning from dialysis. He was tired and groggy but much more aware than when I spoke with him yesterday. We had a reasonable 10 minute conversation with him keeping up until he was becoming tired so I told him to go back to sleep.
He said he was suffering from back pain, which was the original problem which led to the administration of the vancomycin, but is also listed as a side effect of the renal failure. Don't know which he's experiencing now. He is sleeping without medication which is very good. The Drs are trying not to give him meds while the kidneys are healing.

Tues April 12, 2011 9AM

I hate to post an update that has no update, but that's all I have at this time. The ICU unit is very busy and they were supposed to have completed the dialysis between 7-9AM but as of 9AM they have not yet started. Ed's asleep, which is one small improvement.

He's supposed to have dialysis once a day in the morning until they see an improvement in his kidneys, as of this am it has not yet been given, so there's no expectation that he will have improved or be in any better mental health since I spoke with him yesterday.

The ICU unit has 25+ beds and the nurses don't have time to give detailed updates very often, so I'm going to call after lunch and check in again, unless there's any noticeable improvement I'll probably not post another update until after he's had his dialysis tomorrow, Wed when I have a real update.

Back in time, Earlier update

My father was admitted to the hospital Sat PM with Acute Renal Failure. He was being treated with Vancomycin for an infection in his spine. At the end of a multi-week course he was on another (unknown) anti-biotic. He developed a delayed allergic reaction to the Vancomycin and suffered what they call the Red Man Syndrome, because one turns red from head to toe.

The doctors switched him to a Vanco analog (which I don't know the name of) and he had a more immediate reaction. They went in to do blood work and the results were so severe the lab technician called the Dr at home to inform her of the results. She called Jeanne and told her to get Ed to the nearest ER possible. He was admitted into ICU with Acute Renal Failure and is undergoing dialysis.

Please do not send him flowers as it will likely only irritate him.

Mon April 11, 2011

No real changes since this am, he's very disoriented which is a side effect of kidney failure. He is sometimes lucid, mostly not. When I spoke to him he was paranoid and not trusting his immediate caregivers; not recognizing friends and family. This is supposed to get better as he goes through more dialysis. With Ed gone, Jeanne is having trouble with her PC and I told her not to worry I'd post updates for her.
At this time no special web site hawking flowers, I know he wouldn't want that.
So, we'll try blogger.com, let me know if you have any trouble viewing this site.