We knew we had a few visitors lined up for Saturday but who knew they'd all be coming with food!
Millie D showed up with an MRE consisting of baked ham, and a bunch of sides including her signature crumb cake. And she didn't stop with one meal. I think we're fed for a few more days to come. It was the easiest dinner party we ever hosted... just add water:)
Ann spent the afternoon with Yvonne and too arrived with food in hand. This recovery period could be rough on my bathroom scale...
Speaking of recovery... Yvonne reports that the discomfort of getting up from a chair or bed is lessening every day. Yesterday was the first day with no pain killers at all.
Sunday, September 30, 2012
Saturday, September 29, 2012
I can't stop myself....
I admit it... My name is Phil and I'm addicted to blogging. There, I said it.
No energy to fight the urge so here we go with a recap of last night and a look ahead to today.
PARTY!!
Last night a few of the boys came over bearing beer and we ordered a pizza. Yvonne totally enjoyed being a part of my Friday night fun even if she was not offered any beer this time around.
Fresh off my trip to South America I opened a bottle of Chilean Pisco and mixed up a drink called a Green Hornet. Yvonne laughed watching our faces as we tasted this thing fearing "the sting". But it was good!
A little baseball on the TV and some music in the background from our talented friends and it made for a fine evening. It sure beats a night of dialysis!!
Earlier niece Brittany and a friend dropped in with some flowers for her Titi. Purell-man was indeed busy:)
More visitors are expected this afternoon. This should be a very nice weekend.
No energy to fight the urge so here we go with a recap of last night and a look ahead to today.
PARTY!!
Last night a few of the boys came over bearing beer and we ordered a pizza. Yvonne totally enjoyed being a part of my Friday night fun even if she was not offered any beer this time around.
Fresh off my trip to South America I opened a bottle of Chilean Pisco and mixed up a drink called a Green Hornet. Yvonne laughed watching our faces as we tasted this thing fearing "the sting". But it was good!
A little baseball on the TV and some music in the background from our talented friends and it made for a fine evening. It sure beats a night of dialysis!!
Earlier niece Brittany and a friend dropped in with some flowers for her Titi. Purell-man was indeed busy:)
More visitors are expected this afternoon. This should be a very nice weekend.
Friday, September 28, 2012
Clinic Visit #2
I have to laugh.... I "pre wrote" today's entry last night. I was sure it would go like this:
This is already feeling "routine". Walk in at 7:30 AM, check in at the desk, get called to draw bloods, see Physician Assistant who asks if all is well as she looks over daily log of weigh change, urine output, temperature and blood pressure.
This is followed by a very brief chat with the nephrologist and nurse who take a look at how the incision is healing.
Thumbs up all around and we are out of there in under 2 hours.
Well. The "thumbs up" part was right but the rest was waaaayyyy off.
To start with the UN Traffic monster caught us going and coming back. Both trips topped 30 minutes to go 1.5 miles in a cab.
When we walked into the clinic Wednesday at 7:30 the large waiting room was pretty empty. Today there was no place to sit! It seems when you have Jewish holidays neither Jewish doctors nor Jewish patients are in but the day after is going to be a busy day!!
We waited an hour to be seen by the Physician's Assistant who summoned the nephrologist to come in so they could make it a duel visit. It lasted maybe 5 minutes. Everything was good. Creatinine down to 1.1. Excellent!
This good news was followed by a 90 minute wait for blood to be drawn. That was horrible.
And after that traffic..... Total trip was over 4 hours for 10 minutes of doctoring.
The next scheduled event is Tuesday Oct 2. I'm not sure if I will post anything in between. maybe just a brief entry to say hello.
This is already feeling "routine". Walk in at 7:30 AM, check in at the desk, get called to draw bloods, see Physician Assistant who asks if all is well as she looks over daily log of weigh change, urine output, temperature and blood pressure.
This is followed by a very brief chat with the nephrologist and nurse who take a look at how the incision is healing.
Thumbs up all around and we are out of there in under 2 hours.
Well. The "thumbs up" part was right but the rest was waaaayyyy off.
To start with the UN Traffic monster caught us going and coming back. Both trips topped 30 minutes to go 1.5 miles in a cab.
When we walked into the clinic Wednesday at 7:30 the large waiting room was pretty empty. Today there was no place to sit! It seems when you have Jewish holidays neither Jewish doctors nor Jewish patients are in but the day after is going to be a busy day!!
We waited an hour to be seen by the Physician's Assistant who summoned the nephrologist to come in so they could make it a duel visit. It lasted maybe 5 minutes. Everything was good. Creatinine down to 1.1. Excellent!
This good news was followed by a 90 minute wait for blood to be drawn. That was horrible.
And after that traffic..... Total trip was over 4 hours for 10 minutes of doctoring.
The next scheduled event is Tuesday Oct 2. I'm not sure if I will post anything in between. maybe just a brief entry to say hello.
Thursday, September 27, 2012
A day with no doctors. Cool!
After 9 consecutive days in some sort of health care facility (dialysis, surgery, ER, followup) we finally have a full day at home! And Yvonne is enjoying it. She has been getting some air on our balcony as well as up on the roof deck. It's been a real nice day.
So while this good positive vibe is dominating I thought this would be a good time to look ahead a bit.
There are 3 parts to Yvonne's recovery and it can take up to 3 months but we're hoping it is half of that.
Part one is recovery from the surgery itself. The incision is maybe 10 inches from top to bottom and it cut through every layer to get to the insides. This was no "minimally invasive" operation. Yvonne should be walking (in order to avoid any respiratory complications) but certainly no exercise or lifting or bending. Yvonne has some super pain-killers but she is not really taking them that often.
Part two is adjusting the medication. Post Transplant meds are about as important as the surgery itself. Not enough immuno-suppressive drugs could lead to rejection and too much could cause kidney damage. So it is a balancing act that requires constant blood tests and constant monitoring and adjusting of the meds.
It actually is very complicated as other drugs impact the immuno-suppressive drugs. One anti-fungal drug enhances the impact of the other drug so that dose will be increased when this drug is discontinued. Some drugs take a few weeks to saturate your system so the dosage could be higher now and lowered later. This is the main reason Yvonne will be going twice a week to the clinic.
Part three is the one I understand the least and therefore cannot explain very well. The immuno-suppressive drug which was given intravenously in the hospital is a real immune system killer. Yvonne is the most susceptible to germs right now. Over time she will get back more of her immune system but it will never come back all the way. It's being suppressed to prevent that. So part of her recovery is just allowing time for a partial recovery of the immune system so she'll have some ability to fight off germs in the real world.
Having said that, Yvonne must always be careful about exposure to bacteria and viruses. Purell bottles will be everywhere she is. On her desk at work, at home, in her purse, etc.. Right now if you walk in here, I will squirt you with the jumbo bottle at the door. I'll aim for your hands but my aim is not so good:)
So Yvonne will be home for roughly a month other than the clinic visits, a few other doctor appointments and the occasional walk on the roof. She can certainly talk on the phone and visitors are welcome. This will help break up the days and weeks of being home.
Rules for Visiting (if you know me you know I'm detail-oriented or as Yvonne likes to phrase it, a pain in the ass).
So while this good positive vibe is dominating I thought this would be a good time to look ahead a bit.
There are 3 parts to Yvonne's recovery and it can take up to 3 months but we're hoping it is half of that.
Part one is recovery from the surgery itself. The incision is maybe 10 inches from top to bottom and it cut through every layer to get to the insides. This was no "minimally invasive" operation. Yvonne should be walking (in order to avoid any respiratory complications) but certainly no exercise or lifting or bending. Yvonne has some super pain-killers but she is not really taking them that often.
Part two is adjusting the medication. Post Transplant meds are about as important as the surgery itself. Not enough immuno-suppressive drugs could lead to rejection and too much could cause kidney damage. So it is a balancing act that requires constant blood tests and constant monitoring and adjusting of the meds.
It actually is very complicated as other drugs impact the immuno-suppressive drugs. One anti-fungal drug enhances the impact of the other drug so that dose will be increased when this drug is discontinued. Some drugs take a few weeks to saturate your system so the dosage could be higher now and lowered later. This is the main reason Yvonne will be going twice a week to the clinic.
Part three is the one I understand the least and therefore cannot explain very well. The immuno-suppressive drug which was given intravenously in the hospital is a real immune system killer. Yvonne is the most susceptible to germs right now. Over time she will get back more of her immune system but it will never come back all the way. It's being suppressed to prevent that. So part of her recovery is just allowing time for a partial recovery of the immune system so she'll have some ability to fight off germs in the real world.
Having said that, Yvonne must always be careful about exposure to bacteria and viruses. Purell bottles will be everywhere she is. On her desk at work, at home, in her purse, etc.. Right now if you walk in here, I will squirt you with the jumbo bottle at the door. I'll aim for your hands but my aim is not so good:)
So Yvonne will be home for roughly a month other than the clinic visits, a few other doctor appointments and the occasional walk on the roof. She can certainly talk on the phone and visitors are welcome. This will help break up the days and weeks of being home.
Rules for Visiting (if you know me you know I'm detail-oriented or as Yvonne likes to phrase it, a pain in the ass).
- Again the most obvious is to stay away if you are sick or have been around sick people. If you have school age kids at home you are more likely to have some exposure.
- When you do come the Purell-man will great you. Use it.
- There is no touching the patient! No hugs, no kisses. (this is tougher for me than you...)
- Please don't expect a typical social visit. It's highly unlikely you will be offered anything to eat or drink. Sorry but I really don't need anything extra to think about!
- Probably best if you come in small groups or alone. Large groups may make it harder to keep Yvonne somewhat separated from people in the room.
- Give us a heads up that you want to visit.
- Finally if you decide to bring Yvonne anything to eat/drink please stay away from Grapefruit, pomegranate, herbal anything raw meats and anything from an open-air salad bar.
- Don't piss off my cats.
Wednesday, September 26, 2012
A fine evening
I'm just reporting that there is nothing to report. But somehow you know that will take a few paragraphs to say it my way.
Yvonne is doing fine and those of you also on Facebook saw a few photos from the day. Cooking and getting "treated" by one of the cats. It was a nice quiet night at home and it was just what we needed. I reminded Yvonne that in the hospital she was urged to get up and walk so now that she's home she probably should not just sit in the recliner and watch TV. I further suggested she could do some cooking. Well it worked! LOL
I did all the bending to get the pots & pans out and put stuff in the oven but she's pretty capable when it comes to seasoning the chicken (as long as she didn't touch the raw chicken) or cutting up some veggies. Not much of a strain.
Speaking of straining.... we now have a little bit of a theory about the bleeding yesterday that sent us to the ER. Yvonne noted that the hospital bed has a button to get her in a sitting position and then she swings her legs off the bed and she stands up. But at home she uses abdominal muscles to get up and since that's where she was sliced open the strain probably caused some small blood vessels to pop. We discussed this possibility at the clinic and it was agreed that additional motion of some sort probably caused it. There was no concern.
Going back to add some detail
A few days ago in this blog I made a bit of a joke about Yvonne getting stuck in traffic and she might have to pee. Well that humor would have been lost on you if you weren't aware that once the kidney failed Yvonne NEVER had to be concerned about that. She produced no urine for the past 2 years. It was perhaps the only good thing about kidney failure...
So since no fluid ever came out Yvonne drastically limited the amount that went in. She might typically drink 2 or 3 ounces at a meal and tried to limit the total volume in a day to something around 8-10 ounces of fluid. For this reason her favorite "drink" was ice cubes. Just ice cubes. Sometimes when we'd be out, I'd get a soda on ice and drink the soda and give Yvonne the ice. Of course ice melts and becomes water but you consume it at a much slower rate so it is more satisfying than a shot of water.
With that background you can now understand how exciting it is to drink again! In fact the goal is 2 to 2.5 liters a day. This is quite a change from before!! And getting up and going to the bathroom to release it is also a change.... but that's what this whole surgery was about.
Yvonne is doing fine and those of you also on Facebook saw a few photos from the day. Cooking and getting "treated" by one of the cats. It was a nice quiet night at home and it was just what we needed. I reminded Yvonne that in the hospital she was urged to get up and walk so now that she's home she probably should not just sit in the recliner and watch TV. I further suggested she could do some cooking. Well it worked! LOL
I did all the bending to get the pots & pans out and put stuff in the oven but she's pretty capable when it comes to seasoning the chicken (as long as she didn't touch the raw chicken) or cutting up some veggies. Not much of a strain.
Speaking of straining.... we now have a little bit of a theory about the bleeding yesterday that sent us to the ER. Yvonne noted that the hospital bed has a button to get her in a sitting position and then she swings her legs off the bed and she stands up. But at home she uses abdominal muscles to get up and since that's where she was sliced open the strain probably caused some small blood vessels to pop. We discussed this possibility at the clinic and it was agreed that additional motion of some sort probably caused it. There was no concern.
Going back to add some detail
A few days ago in this blog I made a bit of a joke about Yvonne getting stuck in traffic and she might have to pee. Well that humor would have been lost on you if you weren't aware that once the kidney failed Yvonne NEVER had to be concerned about that. She produced no urine for the past 2 years. It was perhaps the only good thing about kidney failure...
So since no fluid ever came out Yvonne drastically limited the amount that went in. She might typically drink 2 or 3 ounces at a meal and tried to limit the total volume in a day to something around 8-10 ounces of fluid. For this reason her favorite "drink" was ice cubes. Just ice cubes. Sometimes when we'd be out, I'd get a soda on ice and drink the soda and give Yvonne the ice. Of course ice melts and becomes water but you consume it at a much slower rate so it is more satisfying than a shot of water.
With that background you can now understand how exciting it is to drink again! In fact the goal is 2 to 2.5 liters a day. This is quite a change from before!! And getting up and going to the bathroom to release it is also a change.... but that's what this whole surgery was about.
A time to catch my breath
Yvonne was watching TV but she fell asleep on the couch. That's OK. She can use some real rest.
This morning she had her first visit to the Transplant Clinic. This will be a twice per week ritual for 4-6 weeks followed by a slow down of once per week, once per month, once per quarter and eventually an annual followup. That's the plan.
Today's visit included a doctor, nurse, physician assistant and social worker. Like any team, each is there to play a certain position and together they get the job done. We were pleased with today's starting lineup.
It was a pretty upbeat visit with lots of congratulations being offered and smiling faces as we ran across old friends in the program who just discovered Yvonne is among the lucky ones who found a matching kidney (or in this case, a matching kidney found her!). One person Yvonne saw in the waiting room is her former roommate from this hospital stay who also received a transplanted kidney last Thursday.
There is quite a community feeling in and around the clinic. Yvonne saw a young nephrologist who asked which surgeon did the earlier transplants and you could see the smile as he heard the name of one of the legends in the field who is now retired. Doctors, patients, nurses, admin staff. They seem to be a stable bunch who we continually see in good times and bad.
That same young doctor took one for the team as I vented a bit about the poor communication that took place during and after the surgery. I included yesterday's ER visit as something that need not have happened if there was better communication. I'd like to believe at a minimum I raised the issue enough that it won't happen to the next person in my shoes.
Blood was taken for tests and a urine sample analyzed and this will happen at every visit. The medications will be adjusted based on the results of these tests.Because of yesterday's ER visit the kidney function was already known and it is the lowest yet (1.2). This is terrific. Yvonne probably hasn't seen a number that low since early 1993.
And since I made such a big deal about traffic jams I should say that again were able to get there and back without much trouble.
All in all a good day:)
This morning she had her first visit to the Transplant Clinic. This will be a twice per week ritual for 4-6 weeks followed by a slow down of once per week, once per month, once per quarter and eventually an annual followup. That's the plan.
Today's visit included a doctor, nurse, physician assistant and social worker. Like any team, each is there to play a certain position and together they get the job done. We were pleased with today's starting lineup.
It was a pretty upbeat visit with lots of congratulations being offered and smiling faces as we ran across old friends in the program who just discovered Yvonne is among the lucky ones who found a matching kidney (or in this case, a matching kidney found her!). One person Yvonne saw in the waiting room is her former roommate from this hospital stay who also received a transplanted kidney last Thursday.
There is quite a community feeling in and around the clinic. Yvonne saw a young nephrologist who asked which surgeon did the earlier transplants and you could see the smile as he heard the name of one of the legends in the field who is now retired. Doctors, patients, nurses, admin staff. They seem to be a stable bunch who we continually see in good times and bad.
That same young doctor took one for the team as I vented a bit about the poor communication that took place during and after the surgery. I included yesterday's ER visit as something that need not have happened if there was better communication. I'd like to believe at a minimum I raised the issue enough that it won't happen to the next person in my shoes.
Blood was taken for tests and a urine sample analyzed and this will happen at every visit. The medications will be adjusted based on the results of these tests.Because of yesterday's ER visit the kidney function was already known and it is the lowest yet (1.2). This is terrific. Yvonne probably hasn't seen a number that low since early 1993.
And since I made such a big deal about traffic jams I should say that again were able to get there and back without much trouble.
All in all a good day:)
Clinic Visit #1
Post Transplant followups will be done at the Transplant Clinic 2 times a week. They should take about 4 hours which includes leaving blood and urine samples and meetings with 2 or 3 doctors, nurses, etc.
My fears about traffic gridlock have not materialized after the first two nightmare rides. The last two have been almost routine.
After yesterday's "lost day" Yvonne had a visit from my brother, his wife and daughter. She caught up on some TV and had a restful evening. The fluids dripping from the incision continue to require attention in order to keep the area dry.
Yvonne spoke to Kathy a few times yesterday. She feels pretty good.
My fears about traffic gridlock have not materialized after the first two nightmare rides. The last two have been almost routine.
After yesterday's "lost day" Yvonne had a visit from my brother, his wife and daughter. She caught up on some TV and had a restful evening. The fluids dripping from the incision continue to require attention in order to keep the area dry.
Yvonne spoke to Kathy a few times yesterday. She feels pretty good.
Tuesday, September 25, 2012
What the bleep was that!
I can't decide if I'm relieved or totally pissed off. I think it is the latter.
Recapping the day. Yvonne saw blood in her urine and we were concerned. We called the transplant team and were told to come to the ER. Blood and urine was checked and an ultrasound of the kidney was done. All of this took the entire day. Around 4 PM they said let's see one more urine sample to look at the color. If that's good you can go.
Well it took nearly 2 hours after Yvonne provided that sample that a doctor looked at it and agreed it wasn't blood colored anymore.
The problem was first noted around 7 AM and we got home around 7 PM. But here's the problem....
The whole episode was avoidable if someone had explained to us yesterday what they explained today. Namely that the cutting done in the surgery was so deep that we should expect this as well as a light red fluid escaping from the surgical incision which we also observed this morning. We were loaded up with 50 gauze pads and told to change it every 2 hours. Where was this information yesterday???!!???
So I'm relieved that we have no problems to deal with but man am I pissed off that we were put through this again. In 12 hours we'll be back for the scheduled follow-up with many of the same people we saw today. Go figure.
Recapping the day. Yvonne saw blood in her urine and we were concerned. We called the transplant team and were told to come to the ER. Blood and urine was checked and an ultrasound of the kidney was done. All of this took the entire day. Around 4 PM they said let's see one more urine sample to look at the color. If that's good you can go.
Well it took nearly 2 hours after Yvonne provided that sample that a doctor looked at it and agreed it wasn't blood colored anymore.
The problem was first noted around 7 AM and we got home around 7 PM. But here's the problem....
The whole episode was avoidable if someone had explained to us yesterday what they explained today. Namely that the cutting done in the surgery was so deep that we should expect this as well as a light red fluid escaping from the surgical incision which we also observed this morning. We were loaded up with 50 gauze pads and told to change it every 2 hours. Where was this information yesterday???!!???
So I'm relieved that we have no problems to deal with but man am I pissed off that we were put through this again. In 12 hours we'll be back for the scheduled follow-up with many of the same people we saw today. Go figure.
Where did the day go?
Somewhere between 8 and 9 AM Yvonne suspected there may be a problem.
Around 9 AM she called the transplant center to discuss
By 10 we knew we were going to the ER.
We discussed options given the traffic situation and decided to ask cousin Peter for a ride.
This got us to the ER at 11AM.
There were a series of interviews over the next hour until Yvonne got her bed in the ER hallway. The ER was packed. Transplant team was called.
Between 1& 2 PM blood was drawn and sent to the lab.
Around 2 PM there was an ultrasound of the kidney. That took around 45 minutes. Maybe more because I had time for a nap
Another hour has passed. We are waiting for more lab results and a decision to keep her here overnight for observation. If we leave we face the dreaded UN gridlock. Yvonne has an appointment for 7:30 AM which is only 15 hours away. It isn't clear to me if going hone is really the best thing.
But some patients have been in the ER for 70 hours just waiting for a bed to open up. I think if we can get out we will.
Around 9 AM she called the transplant center to discuss
By 10 we knew we were going to the ER.
We discussed options given the traffic situation and decided to ask cousin Peter for a ride.
This got us to the ER at 11AM.
There were a series of interviews over the next hour until Yvonne got her bed in the ER hallway. The ER was packed. Transplant team was called.
Between 1& 2 PM blood was drawn and sent to the lab.
Around 2 PM there was an ultrasound of the kidney. That took around 45 minutes. Maybe more because I had time for a nap
Another hour has passed. We are waiting for more lab results and a decision to keep her here overnight for observation. If we leave we face the dreaded UN gridlock. Yvonne has an appointment for 7:30 AM which is only 15 hours away. It isn't clear to me if going hone is really the best thing.
But some patients have been in the ER for 70 hours just waiting for a bed to open up. I think if we can get out we will.
ER Update
We had concerns 5 hours ago. We still have no answers. We actually aren't sure there is a problem!
There was some unexpected bleeding and there was a decrease in urine output which is the kidney's main job. So of course there is concern. But now the bleeding may have stopped and she's back to making urine so maybe we overreacted to something minor. Its hard to know.
There was some unexpected bleeding and there was a decrease in urine output which is the kidney's main job. So of course there is concern. But now the bleeding may have stopped and she's back to making urine so maybe we overreacted to something minor. Its hard to know.
ER visit #1
We knew that we'd be making trips to the ER now and then but to go the first day home is so cruel.
And with the UN gridlock out there this journey will not be easy
Yvonne has some unexpected bleeding that needs to be checked out.
And with the UN gridlock out there this journey will not be easy
Yvonne has some unexpected bleeding that needs to be checked out.
Monday, September 24, 2012
Yvonne is home now!!!
Let the next phase begin.
Of course the exit from the hospital did not exactly go smoothly due to the UN General Assembly being in session.
I went out of my building attempting to take a bus up 1st Ave but seconds into that I was reminded that there is no bus on 1st Ave during the UN General Assembly. So I decided to walk up 1st Ave only to discover there is no walking on 1st Ave during the UN General Assembly.
So I walked up 2nd Ave only to discover we couldn't go north at the corner of 47th St because of a motorcade leaving the UN General Assembly. We stacked up at the corner for 10 minutes until some random head of state zoomed by with 50 of his closest pals...
I continued up 2nd Ave but when I hit 59th St I had to cross to the west side of the street because of the 59th St Bridge. There an impatient motorist almost ran me over because he didn't care that his light turned red.
Well I lost it and start pounding on his car screaming "YOU MISSED THE LIGHT!!!" I called out to a nearby cop and yelled "this fool is running over people in the crosswalk. He missed the light!!!!" Actually I used a much stronger word than "fool" but it started with the same letter...
I left with Yvonne and directed the cab to go in a route that took us far from the UN. But silly me... that route took us near the Waldorf and all the other places diplomats stay at when they leave the UN General Assembly. It took about 40 minutes for a ride that is under 2 miles.
And the big concern while we are stuck in traffic is now.... she might have to pee!
Of course the exit from the hospital did not exactly go smoothly due to the UN General Assembly being in session.
I went out of my building attempting to take a bus up 1st Ave but seconds into that I was reminded that there is no bus on 1st Ave during the UN General Assembly. So I decided to walk up 1st Ave only to discover there is no walking on 1st Ave during the UN General Assembly.
So I walked up 2nd Ave only to discover we couldn't go north at the corner of 47th St because of a motorcade leaving the UN General Assembly. We stacked up at the corner for 10 minutes until some random head of state zoomed by with 50 of his closest pals...
I continued up 2nd Ave but when I hit 59th St I had to cross to the west side of the street because of the 59th St Bridge. There an impatient motorist almost ran me over because he didn't care that his light turned red.
Well I lost it and start pounding on his car screaming "YOU MISSED THE LIGHT!!!" I called out to a nearby cop and yelled "this fool is running over people in the crosswalk. He missed the light!!!!" Actually I used a much stronger word than "fool" but it started with the same letter...
I left with Yvonne and directed the cab to go in a route that took us far from the UN. But silly me... that route took us near the Waldorf and all the other places diplomats stay at when they leave the UN General Assembly. It took about 40 minutes for a ride that is under 2 miles.
And the big concern while we are stuck in traffic is now.... she might have to pee!
Reading my writing
I just reread the entire blog from the beginning. This was my first chance to do that. I think for the most part I faithfully recorded the events of the past 5 days with maybe one exception.
I did not really document the anger I felt towards the surgeon, who was is the main guy, with respect to telling me what happened in the OR. I actually made a joke about taking old radios apart and putting them back together. Basically I didn't want to get all worked up and start screaming at random doctors because it was really just one (or two ) that I think messed up in communicating with me.
Yvonne's surgery started late, took long, and she remained in the OR for even more time because there was reason to be concerned about her very low blood pressure. There was a lot of bleeding.
The loss of blood which caused the low blood pressure prevented them from starting the immune suppressing drugs in the OR as they typically do. It was delayed a full day because the reaction to this drug is often fevers, rapid heartbeat, etc and this would not help if the patient was not yet stable. I have to believe this decision was made because of concern about keeping Yvonne alive even if it meant losing the kidney, though in fairness they didn't think the kidney was in any danger. But had it been less of a match that would not be the case.
This massive blood loss required a transfusion in the OR and another in Recovery. It wasn't until the 3rd transfusion the next afternoon that I knew ANY OF THIS!!! And this is the point when we realized we hadn't heard the full story. It would take almost another 24 hours until we did.
I gave it to one surgeon who assisted in the transplant surgery when she came to check Yvonne on Saturday afternoon. I know I raised my voice when I told her "I have 100 pages of health notes covering Yvonne over the past 19 years but for the last 2 days I have nothing but blank pages!!"
She recognized the level of my unhappiness and took the time to explain everything in sufficient detail. She then tried to defend the Physician Assistant who told me on Thursday everything was routine but she saw the look on my face and gave up on that pretty quickly.
I bitched about this to a lot of doctors, nurses and janitors in the hospital but I always ended with "If they had to mess up on one thing I'd rather it be on talking to me."
And I do mean that. We're told this surgeon is the best and he insists on handling the difficult surgeries. I may have been told it was routine because he came into it knowing the IV's would be an issue, the two prior transplant surgeries would create havoc and the blood would be everywhere. He knew he had a good matching kidney(*) and basically, everything that happened was in a sense "routine" under those circumstances. Fucking know-it-all:)
The * above is to note that it was this surgeon who called off a potential transplant several months ago because he felt it wasn't a "good enough match". We received a phone call at 4 AM that a kidney was available that might go to Yvonne and at 8 AM it was indeed going to be hers and as we were in a taxi heading into the hospital driveway we got a call that this surgeon said "nope" and we went home to cry.
Wow... I get all worked up just writing about it. Thank God he is so skilled in the OR and thank God for Cousin Kathy!
OK. Leaving now to pack up Yvonne and bring her home. I'm hoping the arrival of the heads of state of every country on the planet into my neighborhood doesn't cause any traffic jams. Ha! Yvonne just told me that FreshDirect cannot deliver to us until they all go home... That's life in the Frozen Zone.
I did not really document the anger I felt towards the surgeon, who was is the main guy, with respect to telling me what happened in the OR. I actually made a joke about taking old radios apart and putting them back together. Basically I didn't want to get all worked up and start screaming at random doctors because it was really just one (or two ) that I think messed up in communicating with me.
Yvonne's surgery started late, took long, and she remained in the OR for even more time because there was reason to be concerned about her very low blood pressure. There was a lot of bleeding.
The loss of blood which caused the low blood pressure prevented them from starting the immune suppressing drugs in the OR as they typically do. It was delayed a full day because the reaction to this drug is often fevers, rapid heartbeat, etc and this would not help if the patient was not yet stable. I have to believe this decision was made because of concern about keeping Yvonne alive even if it meant losing the kidney, though in fairness they didn't think the kidney was in any danger. But had it been less of a match that would not be the case.
This massive blood loss required a transfusion in the OR and another in Recovery. It wasn't until the 3rd transfusion the next afternoon that I knew ANY OF THIS!!! And this is the point when we realized we hadn't heard the full story. It would take almost another 24 hours until we did.
I gave it to one surgeon who assisted in the transplant surgery when she came to check Yvonne on Saturday afternoon. I know I raised my voice when I told her "I have 100 pages of health notes covering Yvonne over the past 19 years but for the last 2 days I have nothing but blank pages!!"
She recognized the level of my unhappiness and took the time to explain everything in sufficient detail. She then tried to defend the Physician Assistant who told me on Thursday everything was routine but she saw the look on my face and gave up on that pretty quickly.
I bitched about this to a lot of doctors, nurses and janitors in the hospital but I always ended with "If they had to mess up on one thing I'd rather it be on talking to me."
And I do mean that. We're told this surgeon is the best and he insists on handling the difficult surgeries. I may have been told it was routine because he came into it knowing the IV's would be an issue, the two prior transplant surgeries would create havoc and the blood would be everywhere. He knew he had a good matching kidney(*) and basically, everything that happened was in a sense "routine" under those circumstances. Fucking know-it-all:)
The * above is to note that it was this surgeon who called off a potential transplant several months ago because he felt it wasn't a "good enough match". We received a phone call at 4 AM that a kidney was available that might go to Yvonne and at 8 AM it was indeed going to be hers and as we were in a taxi heading into the hospital driveway we got a call that this surgeon said "nope" and we went home to cry.
Wow... I get all worked up just writing about it. Thank God he is so skilled in the OR and thank God for Cousin Kathy!
OK. Leaving now to pack up Yvonne and bring her home. I'm hoping the arrival of the heads of state of every country on the planet into my neighborhood doesn't cause any traffic jams. Ha! Yvonne just told me that FreshDirect cannot deliver to us until they all go home... That's life in the Frozen Zone.
Breaking News... She's comin' home!
Yvonne called me after the doctors came to see her and they said she is going home today!
The exact time is still a mystery but I'm thinking mid to late afternoon. (you know, that 4-5PM period of no cabs...)
I know Yvonne is feeling OK because she gave the surgeon some shit for not telling me what was going on and not coming to see me after the surgery.
The end of the hospital stay does not mean the end of the blog. I'll probably keep it going until Yvonne returns to work. Sure you can call Yvonne at home and email, Text, Facebook, etc... but it's better if you read the latest news here first so she doesn't have to repeat it over and over.
I'll update again when she gets here (through the UN General Assembly traffic).
The exact time is still a mystery but I'm thinking mid to late afternoon. (you know, that 4-5PM period of no cabs...)
I know Yvonne is feeling OK because she gave the surgeon some shit for not telling me what was going on and not coming to see me after the surgery.
The end of the hospital stay does not mean the end of the blog. I'll probably keep it going until Yvonne returns to work. Sure you can call Yvonne at home and email, Text, Facebook, etc... but it's better if you read the latest news here first so she doesn't have to repeat it over and over.
I'll update again when she gets here (through the UN General Assembly traffic).
Sunday, September 23, 2012
Could this be the last night here?
I really didn't think this was possible. But we keep hearing that Yvonne may go home on Monday.
She has been getting an IV treatment at noon every day that has run over 12 hours but we are told that since she tolerates it now, they will start it earlier and run it faster and be done at a reasonable time to go home.
I should say that Yvonne graduated to solid food a few hours ago. Yes, a tray showed up with hospital salmon! Not as good as my dinner last night, but still she enjoyed her first meal in 4 full days.
The fevers are a thing of the past, normal heartbeat, pressure is good, electrolytes are OK and there is plenty of urine in da house! Hurray for urine!
The Monday discharge plan is still awaiting approval by the doctors that get the weekends off. So stay tuned for an update tomorrow morning!
Yvonne had by far her best day yet. She had 10 visitors today that spaced out nicely over an 8 hour period without me coordinating that. Who knew that was possible? LOL
She has been getting an IV treatment at noon every day that has run over 12 hours but we are told that since she tolerates it now, they will start it earlier and run it faster and be done at a reasonable time to go home.
I should say that Yvonne graduated to solid food a few hours ago. Yes, a tray showed up with hospital salmon! Not as good as my dinner last night, but still she enjoyed her first meal in 4 full days.
The fevers are a thing of the past, normal heartbeat, pressure is good, electrolytes are OK and there is plenty of urine in da house! Hurray for urine!
The Monday discharge plan is still awaiting approval by the doctors that get the weekends off. So stay tuned for an update tomorrow morning!
Yvonne had by far her best day yet. She had 10 visitors today that spaced out nicely over an 8 hour period without me coordinating that. Who knew that was possible? LOL
Sunday morning report
Yvonne was my wake up call today. Her voice sounded the strongest yet and I was encouraged.
I had a conversation with a nurse in the hall yesterday about Yvonne and when she might go home. To my surprise she said Monday. She later backed off when I reminded her that the surgery was extra difficult but still she thought Yvonne's situation dd not look like anything that might keep her much longer. I thought about that and decided that today was the key day. If there was even a possibility of leaving Mon or Tues we'd need to see dramatic improvements today. Like eating.
And that phone call was good and we may indeed have that! She was already back to having clear fluids, which is not quite bacon & eggs, but it's a start.
Some more random thoughts....
IV problems: This has been a big issue since the surgery started. Yvonne seems to offer no good spots to hook up an IV line. Her blood vessels have been beat up over the past 20 years with various IV connections and what's left behind is narrowed by scar tissue that the vein clots as soon as they get the line in. She had one in her neck and that one got messed up yesterday. They seem to need 2 since the meds are coming in one and blood is being drawn from the other.
Rapid heartbeat: This popped up yesterday afternoon during the Yankee game. I don't think it was related. The cause was not obvious but the IV meds were blamed and the rate was slowed down and the problem went away. That's something to monitor today.
Blogs & Facebook posts: It isn't easy to know how many people see my Facebook posts but the number of friends that have commented or "liked" is higher than anything I've ever posted. 85 "likes" and 76 comments on the original post and that number keeps climbing. There have been virtually no comments on the blogger site (this) but I can see that over 1,000 of my entries have been read. Wow!! I knew close family members would be reading but it seems to have gone well beyond that. And while it is digital communication from afar, I can tell you it helps. It seems any hour of the day that I post something I immediately get some sort of feedback from somewhere around the world.
Brother Pete came to visit: Yvonne's brother stopped in last night to see Yvonne. I took the opportunity to let them speak privately and I walked a few blocks, sat at an outdoor restaurant, ordered a grilled salmon w/broccoli & potatoes and a glass of wine. It was nice to eat something other than deli food! No it wasn't raining at that point:)
I had a conversation with a nurse in the hall yesterday about Yvonne and when she might go home. To my surprise she said Monday. She later backed off when I reminded her that the surgery was extra difficult but still she thought Yvonne's situation dd not look like anything that might keep her much longer. I thought about that and decided that today was the key day. If there was even a possibility of leaving Mon or Tues we'd need to see dramatic improvements today. Like eating.
And that phone call was good and we may indeed have that! She was already back to having clear fluids, which is not quite bacon & eggs, but it's a start.
Some more random thoughts....
IV problems: This has been a big issue since the surgery started. Yvonne seems to offer no good spots to hook up an IV line. Her blood vessels have been beat up over the past 20 years with various IV connections and what's left behind is narrowed by scar tissue that the vein clots as soon as they get the line in. She had one in her neck and that one got messed up yesterday. They seem to need 2 since the meds are coming in one and blood is being drawn from the other.
Rapid heartbeat: This popped up yesterday afternoon during the Yankee game. I don't think it was related. The cause was not obvious but the IV meds were blamed and the rate was slowed down and the problem went away. That's something to monitor today.
Blogs & Facebook posts: It isn't easy to know how many people see my Facebook posts but the number of friends that have commented or "liked" is higher than anything I've ever posted. 85 "likes" and 76 comments on the original post and that number keeps climbing. There have been virtually no comments on the blogger site (this) but I can see that over 1,000 of my entries have been read. Wow!! I knew close family members would be reading but it seems to have gone well beyond that. And while it is digital communication from afar, I can tell you it helps. It seems any hour of the day that I post something I immediately get some sort of feedback from somewhere around the world.
Brother Pete came to visit: Yvonne's brother stopped in last night to see Yvonne. I took the opportunity to let them speak privately and I walked a few blocks, sat at an outdoor restaurant, ordered a grilled salmon w/broccoli & potatoes and a glass of wine. It was nice to eat something other than deli food! No it wasn't raining at that point:)
Saturday, September 22, 2012
Bites, Bowels, Bladder & Blood
We keep hearing references about how difficult the surgery was. I' m super disappointed in the fact that the surgeon has not spoken to me at all. Yvonne saw him on Friday and I'm sure he doesn't work on the weekends so maybe he'll stop in on Monday when I'm here.
The most recent reference was from another doctor who was in the OR saying that when you go through such a difficult surgery it isn't unusual for bowels to not work normally for a while. I can't dive into all the details (Yvonne insists on some privacy!) but the bottom line is that until the bowel reboots Yvonne will not be fed. Anything.
Yesterday they allowed her to have clear fluids but today they cut that out and all she has had is ice chips. Yum. Her last solid food was 72 hours ago.
The blood levels are all good but in particular there is one number that tells them that the kidney is working. Creatinine should be 1.0 with a normal functioning kidney. Kidney failure is around 8 or higher. The earliest reading in Recovery was 5.8 which was unexpected but it was in the 3's yesterday and most recently 1.7 which is awesome.
The amount of urine the kidney is cranking out is measured very carefully. It started off with an impressive volume and then slowed up but recently it picked up again.
I may have lost count but fevers have come and gone either 3 or 4 times in the past 2 days.
All of this I hope explains why I cannot post each little thing that happens as soon as it happens.
OK, some miscellaneous things:
Flowers: I may have been mislead or maybe there isn't total agreement. I asked if people could send flowers and was told yes. But as a few arrived a nurse said flowers are not a good idea. So maybe they no longer ban them but they also don't encourage them. The ones Yvonne got are beautiful by the way...
Kathy: she did check out of the hospital as scheduled. She stopped in to see Yvonne (which was when I posted the photo on FB)
Me: a few people expressed concern about me. Thanks. I'm OK. I haven't missed a meal:). I spend a lot of time in the hospital but I have a comfy chair by a window with a fine river view, cable TV, free wi-fi and a convenient outlet to keep all the toys charged up. Two 24-hr delis provide the meals and an entire fleet of taxis gets me to and from when I don't feel like walking the 1.5 miles home.
The most recent reference was from another doctor who was in the OR saying that when you go through such a difficult surgery it isn't unusual for bowels to not work normally for a while. I can't dive into all the details (Yvonne insists on some privacy!) but the bottom line is that until the bowel reboots Yvonne will not be fed. Anything.
Yesterday they allowed her to have clear fluids but today they cut that out and all she has had is ice chips. Yum. Her last solid food was 72 hours ago.
The blood levels are all good but in particular there is one number that tells them that the kidney is working. Creatinine should be 1.0 with a normal functioning kidney. Kidney failure is around 8 or higher. The earliest reading in Recovery was 5.8 which was unexpected but it was in the 3's yesterday and most recently 1.7 which is awesome.
The amount of urine the kidney is cranking out is measured very carefully. It started off with an impressive volume and then slowed up but recently it picked up again.
I may have lost count but fevers have come and gone either 3 or 4 times in the past 2 days.
All of this I hope explains why I cannot post each little thing that happens as soon as it happens.
OK, some miscellaneous things:
Flowers: I may have been mislead or maybe there isn't total agreement. I asked if people could send flowers and was told yes. But as a few arrived a nurse said flowers are not a good idea. So maybe they no longer ban them but they also don't encourage them. The ones Yvonne got are beautiful by the way...
Kathy: she did check out of the hospital as scheduled. She stopped in to see Yvonne (which was when I posted the photo on FB)
Me: a few people expressed concern about me. Thanks. I'm OK. I haven't missed a meal:). I spend a lot of time in the hospital but I have a comfy chair by a window with a fine river view, cable TV, free wi-fi and a convenient outlet to keep all the toys charged up. Two 24-hr delis provide the meals and an entire fleet of taxis gets me to and from when I don't feel like walking the 1.5 miles home.
Period of Adjustment
I got off the phone moments ago and Yvonne reported that another fever of 103 came and went. This will likely continue for a few days I'm afraid. The medicine she is taking is essentially killing her immune system so it doesn't reject the kidney. The fever is a common side effect that takes place while this is going on.
Of course I take the position that the fever could be from other causes and they think it is the expected side effect. I discussed that with an arrogant doctor who dismissed my concerns saying that if they had grossly messed up the surgery the infection would not have caused a fever this quickly. Me thinks he is a bit too defensive as I merely suggested that fevers come from other things and was asking how they'd be sure what caused this one.
As long as I'm on the topic of lowered immune system I may as well say a word about visiting.
It's sort of a given that once you get an organ transplant and a lowered immune system that you will get sick. But this is not something you want to deal with while the kidney adjusts to the new surroundings.
Because I expect the situation to change by the hour I'm probably not going to document every change. Expect maybe one or two updates each day.
Lastly, I heard that Kathy is going home this morning. I need to stop typing and head up there to see her before she goes. Bob went home last night to get his car and is probably already driving into the city to pick her up.
Of course I take the position that the fever could be from other causes and they think it is the expected side effect. I discussed that with an arrogant doctor who dismissed my concerns saying that if they had grossly messed up the surgery the infection would not have caused a fever this quickly. Me thinks he is a bit too defensive as I merely suggested that fevers come from other things and was asking how they'd be sure what caused this one.
As long as I'm on the topic of lowered immune system I may as well say a word about visiting.
- It's probably best to check with me before planning to see her.
- Don't come if you are sick.
- Don't come if you have been around anyone who is sick
- She isn't hugging or kissing anyone. (yes, even me).
- Use the disinfectant that you see on the wall before entering the room.
- Unlike the past years they no longer ban flowers but the space for them is quite limited.
- Yvonne was not yet eating solid food so that won't work now either.
It's sort of a given that once you get an organ transplant and a lowered immune system that you will get sick. But this is not something you want to deal with while the kidney adjusts to the new surroundings.
Because I expect the situation to change by the hour I'm probably not going to document every change. Expect maybe one or two updates each day.
Lastly, I heard that Kathy is going home this morning. I need to stop typing and head up there to see her before she goes. Bob went home last night to get his car and is probably already driving into the city to pick her up.
Friday, September 21, 2012
Night 2
An interesting day for sure. Yvonne started good, got better, felt worse and now seems to be comfortable. She saw her nephew Dan and niece Emily (via video chat) this evening as well as a friend from dialysis who stooped in after his treatment.
A fever came and went which is believed to be a reaction to medication that she is getting.
Yvonne is going to go for a walk now and then settle in and watch the Yankee game. Almost sounds lie a normal night:)
A fever came and went which is believed to be a reaction to medication that she is getting.
Yvonne is going to go for a walk now and then settle in and watch the Yankee game. Almost sounds lie a normal night:)
There will be bumps in the road
Yvonne looked and sounded great this afternoon. I stepped out to pickup a sandwich and returned 15 minutes later to find 2 nurses around the bed arranging blankets and discussing a fever.
Damn it changes fast.
The fever is 101,4 and it just "appeared". I think it is a common side effect of the drug being used to lower her immune system. But really it could be from any other cause as well.
The afternoon was pleasant. Another dialysis nurse named Rocky (not to be confused with a certain Siamese cat with the same name) came to say hello. Yvonne's dear friend Millie dropped in and so did Cousin Kathy!
This is the first time the Kidney Sisters were together other than a very brief wave as Kathy was leaving Recovery. I took a photo in their matching hospital gowns to remember but I think I will get treated badly if I post it anywhere.
Damn it changes fast.
The fever is 101,4 and it just "appeared". I think it is a common side effect of the drug being used to lower her immune system. But really it could be from any other cause as well.
The afternoon was pleasant. Another dialysis nurse named Rocky (not to be confused with a certain Siamese cat with the same name) came to say hello. Yvonne's dear friend Millie dropped in and so did Cousin Kathy!
This is the first time the Kidney Sisters were together other than a very brief wave as Kathy was leaving Recovery. I took a photo in their matching hospital gowns to remember but I think I will get treated badly if I post it anywhere.
Checking in on Cousin Kathy
I stepped out of Yvonne's room for an hour to visit Kathy. She looks good and seems to be on course to be discharged tomorrow. While I was there, Yvonne's Aunt Carmen and Cousin Freddy (who flew in from Puerto Rico) came to thank Kathy for the gift she has given Yvonne. It was a great moment and I was fortunate to witness it.
Kathy and Bob said they feel like they are now part of another family and we all agreed that we were one.
So cool!
Kathy and Bob said they feel like they are now part of another family and we all agreed that we were one.
So cool!
Really!? Who knew...
She probably thought I can't handle the truth. Why else was I told by the PA that the transplant was "routine" when I now know it wasn't?
It seems like the operation was rather difficult and there was substantial bleeding which caused the low pressure and required a transfusion in the OR, another in Recovery and another here this morning. This explains why Yvonne was in surgery so long and recovery even longer.
We heard from a nurse who was in there watching the transplant that Yvonne's intestines were pulled out and were next to her on the table during the procedure. It seems that the prior transplants cause some tissue to fuse to another requiring a bit of cutting and I guess a lot of bleeding.
I couldn't help but think about times as a kid when I'd take apart a radio and then reassemble it only to have one piece left over that I had no clue where it belonged:). I joked about this when a nephrologist was here and he said that piece is usually the appendix.
It seems like the operation was rather difficult and there was substantial bleeding which caused the low pressure and required a transfusion in the OR, another in Recovery and another here this morning. This explains why Yvonne was in surgery so long and recovery even longer.
We heard from a nurse who was in there watching the transplant that Yvonne's intestines were pulled out and were next to her on the table during the procedure. It seems that the prior transplants cause some tissue to fuse to another requiring a bit of cutting and I guess a lot of bleeding.
I couldn't help but think about times as a kid when I'd take apart a radio and then reassemble it only to have one piece left over that I had no clue where it belonged:). I joked about this when a nephrologist was here and he said that piece is usually the appendix.
Goooooooood Morning!
Well don't I feel refreshed after a .... Never mind. i could use 5 more hours of sleep!
But it's a new day. I've been awake for 90 minutes without a making blog entry:) Seriously I hope I didn't overload you with updates yesterday. But I guess you had the chance to share the frustration as things moved so slowly.
Anyway I spoke to Yvonne around 8 AM and she sounded pretty good. Her voice yesterday was very strained because the breathing tube inserted down her throat during surgery left her feeling very sore and dry. And she wasn't allowed to drink anything making it that much worse. So the fact that she sounded OK on the phone is very good.
Today will be a full day for us of talking to doctors and getting a better idea of her recovery situation. My memory from last time is that she should not be around many people because that only increases the odds of being exposed to bacteria, virus, etc.. Certainly anyone sick and coughing/sneezing should stay far away. Her immune system was severely suppressed in order to prevent rejection of the new kidney.
I don't know how much time Yvonne will have to answer you but I'm sure she'd love to get some emails, FB messages or text messages today. I would ask that you not call her since it could get overwhelming. You can always text her and ask her to call if she can.
MISC Notes:
Thanks Greg for researching where the Blogger setting for Time Zone is! I think all my posts now show the correct time.
Kathy plans to visit Yvonne today. They are in different wings on different floors but I think it will happen.
We heard some mention yesterday that the surgery was indeed more difficult than expected. "Technically challenging" is the term I heard. I hope to see someone from the surgery team who can explain that in more detail.
But it's a new day. I've been awake for 90 minutes without a making blog entry:) Seriously I hope I didn't overload you with updates yesterday. But I guess you had the chance to share the frustration as things moved so slowly.
Anyway I spoke to Yvonne around 8 AM and she sounded pretty good. Her voice yesterday was very strained because the breathing tube inserted down her throat during surgery left her feeling very sore and dry. And she wasn't allowed to drink anything making it that much worse. So the fact that she sounded OK on the phone is very good.
Today will be a full day for us of talking to doctors and getting a better idea of her recovery situation. My memory from last time is that she should not be around many people because that only increases the odds of being exposed to bacteria, virus, etc.. Certainly anyone sick and coughing/sneezing should stay far away. Her immune system was severely suppressed in order to prevent rejection of the new kidney.
I don't know how much time Yvonne will have to answer you but I'm sure she'd love to get some emails, FB messages or text messages today. I would ask that you not call her since it could get overwhelming. You can always text her and ask her to call if she can.
MISC Notes:
Thanks Greg for researching where the Blogger setting for Time Zone is! I think all my posts now show the correct time.
Kathy plans to visit Yvonne today. They are in different wings on different floors but I think it will happen.
We heard some mention yesterday that the surgery was indeed more difficult than expected. "Technically challenging" is the term I heard. I hope to see someone from the surgery team who can explain that in more detail.
Bed time
I arrived home at 2 AM. Yvonne checked into her new room and was being quizzed by the night nurse on the floor as I slipped away to get some sleep.
This is not the time for deep thoughts on all that transpired today. But maybe I can compose a few comments on the more obvious ones.
Wow.... my cousin Kathy is an amazing person. I have always known her to be kind, giving and caring. But this one was hit way out of the ball park. Home Run Kathy!!
And then there is Yvonne.... 19 YEARS of dealing with serious illness and most people who she comes in contact with don't suspect a thing.
Two very special people who now share a very special bond. God bless both of them! AND THEIR KIDNEYS!!!!
This is not the time for deep thoughts on all that transpired today. But maybe I can compose a few comments on the more obvious ones.
Wow.... my cousin Kathy is an amazing person. I have always known her to be kind, giving and caring. But this one was hit way out of the ball park. Home Run Kathy!!
And then there is Yvonne.... 19 YEARS of dealing with serious illness and most people who she comes in contact with don't suspect a thing.
Two very special people who now share a very special bond. God bless both of them! AND THEIR KIDNEYS!!!!
The 20th hour
This will have to be my last hour here today. I'm so tired I can't even think of anything to write about. We had a shift change and havent even bonded with the new nurse...
But as I started writing this a renal doctor came by and I think just said Yvoone can move on to a regular room. Ten hours in Recovery seems excessive but really they know that this is Yvonne's 3rd time down this path and I think they want to be very sure of each thing they do so since her pressure was a little low they just kept her here where the supervision is almist 1-1 until they got the level they were looking for.
Hoping to move to new surroundings soon....
But as I started writing this a renal doctor came by and I think just said Yvoone can move on to a regular room. Ten hours in Recovery seems excessive but really they know that this is Yvonne's 3rd time down this path and I think they want to be very sure of each thing they do so since her pressure was a little low they just kept her here where the supervision is almist 1-1 until they got the level they were looking for.
Hoping to move to new surroundings soon....
Thursday, September 20, 2012
8PM - midnight
Yes, a long day... And it is not over. Nothing bad is happening so relax:)
I have some time to fill so let me catch you up on things.
I went out to a deli to get some food and took it up to Kathy's suite to eat up there with her and Bob. Yes, I said suite. It seems organ donors are a special type of patient.... Hospital Royalty?
Kathy has a single room in the corner with windows on 2 walls, space for a King-size bed and a mini-bar. OK, just a mini fridge:)
But she was in real good spirits, ate some food and was planning to do a little walking later this evening.
Dialysis Nurse Gloria found her way to see Yvonne in Recovery on her break and now came up to check in on Kathy. What a sweetheart!
At 9PM I said goodnight to Kathy and Bob and headed down to visit Yvonne.
She was more alert and talkative and we started talking to her nurse Kristen about getting her into a regular room. It seemed we were close. But nope.
The red count was low so a transfusion was called for. This seemed to take hours for some reason. But it did give us time to tell Kristen about how we met, exchange nail polish tips (Yvonne), show her pictures of our cats and give her a Miramar card (Phil). Along the way I was given a pass and allowed to stay beyond the 30 minute visitor period. I'm in my 3rd hour now! I promised to behave and Kristin said I could stay.
We watched the Yankee Game end on Slingbox (iPad) and now Yvonne is sleeping.
Her pressure is a little low and they are expecting that to go up into the normal range with the transfusion and then she will go to a room and then I will go home.
I have some time to fill so let me catch you up on things.
I went out to a deli to get some food and took it up to Kathy's suite to eat up there with her and Bob. Yes, I said suite. It seems organ donors are a special type of patient.... Hospital Royalty?
Kathy has a single room in the corner with windows on 2 walls, space for a King-size bed and a mini-bar. OK, just a mini fridge:)
But she was in real good spirits, ate some food and was planning to do a little walking later this evening.
Dialysis Nurse Gloria found her way to see Yvonne in Recovery on her break and now came up to check in on Kathy. What a sweetheart!
At 9PM I said goodnight to Kathy and Bob and headed down to visit Yvonne.
She was more alert and talkative and we started talking to her nurse Kristen about getting her into a regular room. It seemed we were close. But nope.
The red count was low so a transfusion was called for. This seemed to take hours for some reason. But it did give us time to tell Kristen about how we met, exchange nail polish tips (Yvonne), show her pictures of our cats and give her a Miramar card (Phil). Along the way I was given a pass and allowed to stay beyond the 30 minute visitor period. I'm in my 3rd hour now! I promised to behave and Kristin said I could stay.
We watched the Yankee Game end on Slingbox (iPad) and now Yvonne is sleeping.
Her pressure is a little low and they are expecting that to go up into the normal range with the transfusion and then she will go to a room and then I will go home.
7PM visit
There will be a 9 PM visit soon. At 7 i decided to let Yvonne talk to her Aunt Carmen on the phone. I spent the entire 30 minute visit trying to figure out how to make that happen.
There was no cell signal so that killed the initial plan. I then recalled i had just installed Skype on my iPhone so I could call home from Chile last month. Great! Except that it insisted on dialing as if it was an international call and Aunt Carmen's 646# was calling New Zealand instead!
Well I eventually got it connected and the nurse said cell phones are not allowed in there. But she was impressed with my ingenuity and let them talk on the phone for a few minutes.
Yvonne saw her surgeon who said all us well
There was no cell signal so that killed the initial plan. I then recalled i had just installed Skype on my iPhone so I could call home from Chile last month. Great! Except that it insisted on dialing as if it was an international call and Aunt Carmen's 646# was calling New Zealand instead!
Well I eventually got it connected and the nurse said cell phones are not allowed in there. But she was impressed with my ingenuity and let them talk on the phone for a few minutes.
Yvonne saw her surgeon who said all us well
Time Zone is off
By the way, you may have noticed my updates are not showing the correct time. If you have a chance to research how to set teh time zone for Blogger send me an email so I can fix it. I seem to be on Pacific Time.
The 7 PM visit is coming up soon
The 7 PM visit is coming up soon
I was just reminded that it doesn't always go as planned
I was sitting in the family waiting area just reading emails and typing replies when the silence was shattered by the anguished screams of a family that just got the news that their loved one died in the operating room.
I only know he was 19 and his family is devastated...
I only know he was 19 and his family is devastated...
The 5PM visit
I left Yvonne around 4 PM after seeing her for a few minutes. My next chance was at 5 PM and after that 7 PM.
But I suddenly realuzed I never fed the cats and I had to get home and back in 1 hr!!!
This is normally not that hard unless that hour is 4-5 PM. For thise unfamiliar, that is an impossible time to get a taxi! And if you do get one you'll just sit in traffic. All cabs drive around with "off duty" lights on but still I was able to talk two of them into taking me home and back in time for the 5 PM visit.
Yvonne was more alert this time and we were able to have a better conversation. She saw her nephroligist who gave her the thunbs up. She also saw Kathy as she was being wheeled out of Recovery and up to her room
She found out she cannot eat or drink at all today so she had to settle for a few ice chips instead.
She is uncomfortable because she is pretty wired up and can't move around. Just lay still on her back. One IV is in her neck just below her ear.
She may still be under the anesthesia somewhat because she didn't yell at me for not feeding the cats.
But I suddenly realuzed I never fed the cats and I had to get home and back in 1 hr!!!
This is normally not that hard unless that hour is 4-5 PM. For thise unfamiliar, that is an impossible time to get a taxi! And if you do get one you'll just sit in traffic. All cabs drive around with "off duty" lights on but still I was able to talk two of them into taking me home and back in time for the 5 PM visit.
Yvonne was more alert this time and we were able to have a better conversation. She saw her nephroligist who gave her the thunbs up. She also saw Kathy as she was being wheeled out of Recovery and up to her room
She found out she cannot eat or drink at all today so she had to settle for a few ice chips instead.
She is uncomfortable because she is pretty wired up and can't move around. Just lay still on her back. One IV is in her neck just below her ear.
She may still be under the anesthesia somewhat because she didn't yell at me for not feeding the cats.
Getting tired of this...
***** this actually posted before the last one but technical error kept it as a draft ******
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I still haven't been allowed to see Yvonne! I was told an X-ray, then told an ultrasound, then told doctors were with her. I'm surprised she didn't tell them she wants to see me.
I don't think there is a problem other than the fact that I'm not happy...
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I still haven't been allowed to see Yvonne! I was told an X-ray, then told an ultrasound, then told doctors were with her. I'm surprised she didn't tell them she wants to see me.
I don't think there is a problem other than the fact that I'm not happy...
Just got a chance to see her:)
As soon as I posted that last update i was allowed to see Yvonne. She was concerned that it was so late in the day and wondered if something was wrong. She saw doctors whispering near her and felt even more like there was a problem.
But as far as I can tell there is no problem. She will remain in Recovery for at least 6 more hours. I can see her every 2 hours for a few minutes. Of course I'll post updates.
PS. I also saw Kathy who seemed to be OK too.
But as far as I can tell there is no problem. She will remain in Recovery for at least 6 more hours. I can see her every 2 hours for a few minutes. Of course I'll post updates.
PS. I also saw Kathy who seemed to be OK too.
Some more details
I wanted to get that last post out there ASAP. Now I have a few minutes to add some things the PA told me.
They took her in early because they knew it would be difficult to get a "main line" setup which is standard in these types of surgery. And in fact they never did get one but that's not a huge issue. I think its mainly a precaution should they need to get medication in quickly.
There was also a delay at the end that I was told had nothing to do with Yvonne. It had to do with the OR I was tokd. Reading into that i'm guessing another patient had big problems in there...
I'm hoping to see her now and then get outside for some air.
They took her in early because they knew it would be difficult to get a "main line" setup which is standard in these types of surgery. And in fact they never did get one but that's not a huge issue. I think its mainly a precaution should they need to get medication in quickly.
There was also a delay at the end that I was told had nothing to do with Yvonne. It had to do with the OR I was tokd. Reading into that i'm guessing another patient had big problems in there...
I'm hoping to see her now and then get outside for some air.
Finally!!
Yvonne went into surgery at 7:45 but it didn't actually start until 9:30. Well I didn't know that for the first few hours so I sat in a chair in the designated waiting area from 9:15 to 2:30 PM, that's 5 hours and 15 minutes of just waiting for news...
Finally Yvonne's doctor's assistant walked in and said that everything is fine!!
What a relief!
Finally Yvonne's doctor's assistant walked in and said that everything is fine!!
What a relief!
This wait is killing me!
I have been glued to the same chair for nearly 5 hours! No news at all!
And the volunteer who gets updates finished her shift and the next shift volunteer called in sick.
So frustrating....
Bob has gone in to see Kathy again in Recovery. I don't dare move and miss the doctor who comes in to see me.
And the volunteer who gets updates finished her shift and the next shift volunteer called in sick.
So frustrating....
Bob has gone in to see Kathy again in Recovery. I don't dare move and miss the doctor who comes in to see me.
Kathy Update
Bob had a chance to see Kathy in the Recovery Room. She was still feelung the effects of the anesthesia ( nauseous). Her first words were " how's Yvonne?"
Same question I have.
Bob had to go back in because he forgot his glasses and Kathy was asleep.
His visits are limited to a few minutes every 2 hours as long as she is in Reovery. Next slot Is at 2PM
Same question I have.
Bob had to go back in because he forgot his glasses and Kathy was asleep.
His visits are limited to a few minutes every 2 hours as long as she is in Reovery. Next slot Is at 2PM
Not so easy to wait!
Doctors stroll into this room every few minutes and give someone an update. But none have come in looking for me. There are lots of smiling faces here! It is a good hospital after all.
A nurse came by and said the surgery didn't actually start until after 9 AM and she expects I'll hear something around 12:30.
A nurse came by and said the surgery didn't actually start until after 9 AM and she expects I'll hear something around 12:30.
Kathy is OK!
Bob just spoke to Kathy's surgeon who reported that everything went well!
No news yet on Yvonne but i'm told i may not hear anything until after noon.
No news yet on Yvonne but i'm told i may not hear anything until after noon.
Waiting for news
It is 10 AM and we are just sitting in a room with 30 other people awaiting word about their loved ones. We all got up before the sun and it shows.
Most surgeries started at the same time so we are all getting anxious for some news.
Most surgeries started at the same time so we are all getting anxious for some news.
The next step: breakfast
At 7:45 Yvonne was wheeled into the OR and Bob and I left for breakfast. Pancakes and sausage:)
We will be back in the hospital at 9:30 awaiting news.
We will be back in the hospital at 9:30 awaiting news.
Hurry up and wait
Alarm went off at 4:45 and the 4 of us piled into a cab at 5:30 am
It's now 7 AM And we are hanging around just waiting to get going. Did some paperwork, hooked up the IV and just waiting....
Gloria, Yvonne's favorite dialysis nurse, is here now talking to Yvonne. They have become very close over the past 2 years.
It's now 7 AM And we are hanging around just waiting to get going. Did some paperwork, hooked up the IV and just waiting....
Gloria, Yvonne's favorite dialysis nurse, is here now talking to Yvonne. They have become very close over the past 2 years.
Wednesday, September 19, 2012
The final dialysis treatment
I went to meet Yvonne at the end of Wednesday's treatment. You can't imagine the joy that comes from the staff of the dialysis center, the other patients and their family/friends that are there to visit. Yvonne is getting a kidney!!
Like Yvonne, these other hemo-dialysis patients are there 3 nights a week for 4+ hours and some are there for years and years just waiting to get called that a matching kidney is available. The wait varies from state to state and across blood types but average waits of 4 to 5 years are not uncommon. And if that is the average you can imagine some patients wait close to a decade for this.
Those fellow patients more than anyone else can relate to the joy Yvonne must feel and it probably gives them hope that one day they too will be saying goodbye to dialysis.
There were hugs amd kisses and tears of joy. Some of them were mine...
Like Yvonne, these other hemo-dialysis patients are there 3 nights a week for 4+ hours and some are there for years and years just waiting to get called that a matching kidney is available. The wait varies from state to state and across blood types but average waits of 4 to 5 years are not uncommon. And if that is the average you can imagine some patients wait close to a decade for this.
Those fellow patients more than anyone else can relate to the joy Yvonne must feel and it probably gives them hope that one day they too will be saying goodbye to dialysis.
There were hugs amd kisses and tears of joy. Some of them were mine...
Almost there
Cousin Kathy and her wonderful husband Bob moved in with us (for a while) last night. We wanted to go out together and since there is no eating the evening before the surgery we planned this for 2 nights before. We had a nice meal during the monsoon rain that fell last night. We ate on Ludlow Street on the Lower East Side primarily because it is very close to the Rockwood Music Hall where we went after dinner to listen to Freddie Stevenson (and his amazing band!). Kathy & Bob do not live in NYC so this was a special night on so many levels. The food was good, the music was good and everyone is felling really good.
Yvonne is at work today and at dialysis tonight. Kathy enjoyed a nice breakfast on our balcony followed by a relaxing walk along the East River. She'll continue to hang around and take it easy the rest of the day today.
Tomorrow we'll be getting up around 5 AM for the main event. Yes, we're all excited!
A lot of people have heard about the transplant by now. Yvonne is getting hugs and prayers from everyone: family, friends, coworkers, doormen, musicians, neighbors.... We feel so blessed. Thank you.
Yvonne is at work today and at dialysis tonight. Kathy enjoyed a nice breakfast on our balcony followed by a relaxing walk along the East River. She'll continue to hang around and take it easy the rest of the day today.
Tomorrow we'll be getting up around 5 AM for the main event. Yes, we're all excited!
A lot of people have heard about the transplant by now. Yvonne is getting hugs and prayers from everyone: family, friends, coworkers, doormen, musicians, neighbors.... We feel so blessed. Thank you.
Monday, September 17, 2012
The 3rd time around
I started this blog post when I saw a problem with the site hosting the blog I began writing 7? years ago. If it ever gets resolved go back and read the prior history.
I'll go back and briefly cover how we got to where we are today. (Believe me when I say I've left some things out. I have a notebook that I started almost 20 years ago and it is almost 100 pages!)
... but 2 years later to the day, on Sept 20, 2012....the 3rd kidney transplant is scheduled to take place!
The first two transplants were from cadaver donors and in those cases you find out you are a candidate for the transplant a few hours before the surgery. But in the case of a living donor, you get to plan it out.
Yvonne's opportunity to get off dialysis and get her life back was made possible by one very special person, my cousin Kathy! She has offered the ultimate gift to Yvonne... one of her kidneys.
It started at the beginning of the summer when they talked at a party and Kathy said "I want to be tested". By some time in July we knew all signals looked good but August was a busy month (weddings, trips, etc) so the transplant surgery was scheduled for September and here we are just a few days away.
A word about the Blog and our privacy.
This is a public blog (the old one was not). As such I will probably leave out some details, names, etc. I'm sure you understand. Yvonne expects to have her cell phone handy after the initial surgery/recovery so feel free to text or email her. Don't call. Very little of this will make its way to Facebook and I would certainly hope you do not paste this link on Facebook or any Social Media page.
Updates
I will make every attempt to update this as often as there is news to report. In the beginning that could be several times per day but I expect that will drop off to maybe once a week depending on how quickly Yvonne recovers and adjusts to the medication.
I'll go back and briefly cover how we got to where we are today. (Believe me when I say I've left some things out. I have a notebook that I started almost 20 years ago and it is almost 100 pages!)
- 1981 Yvonne is diagnosed with Lupus
- August 1993 The Lupus become active
- February 1994 Kidney failure. Start dialysis 3 nights per week.
- November 1994 Kidney transplant
- 1995 an entire year of being sick. New kidney is not doing well.
- April 1997 Kidney failure again. Resume Dialysis 3 nights each week.
- April 1999 2nd Kidney transplant. A "perfect match"
- 2001 transplanted kidney shows signs of a new kidney disease, FSGS. Plasma apheresis treatment started 1 once per week.
- Oct-Dec 2005 PCP Pneumonia (lungs, heart & kidney all malfunctioning to some degree)
- Feb 2006 Pulmonary Embolism on trip to Florida
- Oct 2008 - Aug 2010 A 2 year slide featuring near-constant nauseousness, fatigue, extreme weight loss and frequent hospitalizations to stabilize electrolytes.
- Sept 20, 2010 Kidney failure. resume dialysis 3 night per week
... but 2 years later to the day, on Sept 20, 2012....the 3rd kidney transplant is scheduled to take place!
The first two transplants were from cadaver donors and in those cases you find out you are a candidate for the transplant a few hours before the surgery. But in the case of a living donor, you get to plan it out.
Yvonne's opportunity to get off dialysis and get her life back was made possible by one very special person, my cousin Kathy! She has offered the ultimate gift to Yvonne... one of her kidneys.
It started at the beginning of the summer when they talked at a party and Kathy said "I want to be tested". By some time in July we knew all signals looked good but August was a busy month (weddings, trips, etc) so the transplant surgery was scheduled for September and here we are just a few days away.
A word about the Blog and our privacy.
This is a public blog (the old one was not). As such I will probably leave out some details, names, etc. I'm sure you understand. Yvonne expects to have her cell phone handy after the initial surgery/recovery so feel free to text or email her. Don't call. Very little of this will make its way to Facebook and I would certainly hope you do not paste this link on Facebook or any Social Media page.
Updates
I will make every attempt to update this as often as there is news to report. In the beginning that could be several times per day but I expect that will drop off to maybe once a week depending on how quickly Yvonne recovers and adjusts to the medication.
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