Ups and Downs

First for the good news. G is walking better. And, much further. He is now back to walking as far as he was before the surgery. He says his balance is better.

He is also starting to try to use the keyboard on the computer, something he has not done for some time. I think his coordination was quite bad.

Now for the bad news. The catheter for dialysis is again not running well. And, the surgeon saw G on Friday and said to come back in 6 weeks, and by then he thinks they will be able to use the new fistula site. So, this catheter has to hold out until then.

G said he would take a pillow to sit on Monday, as he hasn't done that the last week or more, as the catheter was running OK. As the catheter is in his groin area, sitting on a pillow will make the area flatter, as where he goes for dialysis they only have recliners to sit in, no beds to lie on.

So, once again, keeping fingers crossed.

Update for the week

I realized I haven't posted for almost a week.

Last Sunday G and I went to the dinner theater which is only 3 blocks from my house. They have a buffet, which was actually quite good. I filled up plates for both G and I. It wasn't too crowded, so that was nice.

The program itself was quite unremarkable, so doubt we will go there again, but at least it was someplace we could go in the wheelchair.

Today G received in the mail the confirmation is approved for the "para transit" bus, which is door to door, with a wheelchair lift. It doesn't operate in the evenings, but does on Saturday, so perhaps we will go somewhere on Saturday.

G had several Dr. appointments this week. I did not go with him (he said he didn't want me to, and I didn't push it).

This morning G was nauseous. He took a nausea pill. I don't know what caused it, but can only guess it was a TIA. The nausea didn't last long, and there has not been any noticeable change, so will keep our fingers crossed.

Too Much Pizza

G had pizza Thursday evening...he ate too much, because Friday morning his face was swollen, and he said he had gained weight when they weighed him at dialysis.

He saw the surgeon Friday morning. He goes back again next Friday. They have not yet taken out all of the staples and stitches.

I asked G today if he wanted to go to the grocery store. It's only 3 blocks away, so I could push him in the wheelchair. He declined, because he says it's too uncomfortable.

He says maybe later today he will go out in the yard.

He is so often really short of breath that it worries me, but guess there is not much to be done.

Things are looking up!

G and I spent the entire day at the VA yesterday. He had about 6 appointments.

It appears the Plavix is working to clear out some blockages. He is scheduled for a CT scan with contrast on June 15 to confirm.

Appears the surgery site for the fistula is doing OK. He will will see the surgeon again to take out some more staples.

The renal Dr. says he needs more protein..he eats a lot of red meat and eggs, but he hasn't been eating dairy products, which, I know is a the best source or protein (from an old biology class), so I ordered a Pizza, and he drank some milk.

So, I think he is out of the woods. His dialysis catheter is doing well, so as long as it holds out for the next 5 weeks, I think he will be OK.

After the appointment with the rental Dr., she said to G "she does a good job" (meaning me)... which G agreed to. Although I know he hates to be dependent on me, well, such is life.

G is bored

Yesterday G did not have any appointments, so he was home all day.

He is feeling better, so he didn't sleep as much. He walked down the wheelchair ramp, which is 32 feet long.

Then he sat in his wheelchair and told me what to do in the yard.

I suggested we go for "a ride" (in the wheelchair), to look at a house a couple of blocks over. It is for sale, and I went to the open house on Sunday. The strange thing about this house is it has a shared garage...it is a 2 car garage, and half of it belongs to the next door house. Very strange. I thought it might be of some interest to G, at least an excuse to get out a bit.

G complained that the sidewalk was very bumpy, so on the way back I "drove" in the street. Much smoother.

All G really does is watch TV or Movies on the computer, read the paper, magazines, and eat.

Yesterday I went to the library and checked out a bunch of books, and he started reading one last night.

This is the first time since his stroke he has attempted to read a book. It has really bothered me, as G has always loved books. I was afraid he had trouble following the story, but I think it was just finding one which was of interest.

At least today he is off to dialysis, and tomorrow he has a full day of appointments at the VA.

One appointment he does not have, but needs, is with the podiatrist. His toes are a bit purple, which is quite worrisome. We called yesterday, and they were to call back, but so far nothing. Think we will try to stop by tomorrow.

G doing better

G is doing better. Yesterday evening and this morning he walked longer distances.

He is still really short of breath, sometimes when just sitting.

But he pushes himself. And this is good. The advice now, even if one has COPD, is to exercise.

His appetite is still good. If he ever gets to the point where he doesn't want to eat, then I will be worried. LOL.

G has trouble walking

Maybe I am in denial.

G had trouble walking this weekend. He takes 2 steps, and is totally exhausted, and he says his coordination is bad.

I tried to get him in to see his primary care Dr. today, but no openings. They said to go to the ER.

G is at dialysis now. I will see how he feels when he gets home. He of course will resist going to the hospital, and I don't blame him. He has several appointments Thursday, and maybe we will just wait until then.

It could be he had another TIA. He was nauseous Thursday morning, which for him, is normally an indication of a TIA. I realize I didn't write about it, hoping it was nothing, but maybe it was something.

But this just being so out of breath is worrisome. I am afraid it's a problem with his heart, which, after his by-pass surgery over 3 years ago, has been doing OK.

VA pushes TeleHealth

Almost every time G is at the VA, someone asks if we are interested in getting TeleHealth. I never knew what this was, only something which monitored your health via phone line.

As we don't have a land line in the house, we could not access this. G never really wanted it, he is always resistant to any type of monitoring, just his nature. Well, low and behold someone phoned the other day to once again offer us this service, and told us we would access via the internet, which we do have.

So I agreed to go meet with her and get the equipment yesterday, after the meeting with the surgeon.

When I got there, she showed me the device, and said the program was set up for "palliative care". I replied "he's not on palliative care", then she said "oh, it's for CHF (congestive heart failure)", to which I replied "well, no one has given us that diagnosis. Which Dr. said this?". So, by now she decided to look it up rather than talking off the top of her head. She claimed the attending Dr. from the last admission ordered TeleHealth, and he had put down palliative care.

I didn't press her on that point.

The attending Dr. in the hospital doesn't know G, and I am sure part of what they are judged on is how many of their discharge patients they get put on this program.

I know if someone were living alone it would be a good program. One is suppose to turn on the machine each day, answer some basic questions about how you feel, and once a week take your blood pressure, with a device which comes with the machine, and which will download the data and send it to the VA.

Like I said, if someone is living alone this would be great, and I think in the future all seniors would benefit from using such a system.

G says he doesn't want it, but I learned that the woman who is responsible for this system can help us do things, like send messages to Drs., etc.

The VA is suppose to be setting up a "messaging" function for their patients, but this is not yet active. One can reorder prescriptions at the moment., but that's about it.

Anyway, I can't set up this device because my modem doesn't have 2 input slots. So that's our excuse for now.

I have wanted to monitor G's blood pressure more closely, but am having troubles with the blood pressure machine. It works OK on me, so will try again on him.

G said his blood pressure was so low after dialysis yesterday he had to wait to leave. It was 85 over something, and his almost never drops below 100, even after dialysis, so this is something new.

Maybe those pills are working.

I am going to wait until G sees his primary care, or maybe Dr. B., who he sees next week, so see what they have to say about this "TeleHealth".

Incision a little infected..??

Good thing the surgeon who knows G came in to look at the incision.

The resident looked at it initially...I showed him the 2 spots which I thought were "suspect". He said they were OK.

Then the surgeon came in, looked at the same 2 spots and said they could be a problem, and called Dr. B to have G put on a round of vancomiacin for a week. They give the vanco IV at the end of the dialysis run (which was today).

I don't think there is anything I could have done to prevent the infection - it's just a problem with G, and good thing the surgeon knows this and took action.

So, after the meeting with the surgeon, G and I had some time to kill so we went to the cafeteria and had biscuits and gravy. We eat healthy at home, so this was a treat. That, plus we don't get out much now as it's not good for G to go in a car.

That fact was also reinforced by the surgeon today, who told G to stay in his wheelchair as much as possible.

Oh, and the really good news is the surgeon could feel 2 fistulas going, so we hope in 6 weeks or so G will have a functioning fistula. Yeaahh!! Now, if only his catheter can keep running until then. It's doing fairly well so far.

Now, back to the vancomiacin. So I know the dialysis center should have the order for the Vanco by say 11:00 (the Drs. spoke around 9:15), but as I know one cannot just assume things will get done, I call. Sure enough, the nurse taking care of G at dialysis knows nothing. I make sure to call while I am still at the VA, and when I find out the dialysis nurse knows nothing, I try to get the phone number for Dr. B's nurse...but the operator won't give it to me, I go into voice mail hell, so I go to the office area.

Well, wouldn't you know it, neither Dr. B nor her nurse are around. I, looking as foreorn and and frustrated as possible, ask someone going by to help me.

Lucky for me she was nice (she is a nurse who works in Oncology, and I think anyone who works in that field has to be nice). She tracked down Dr. B., who asked the nurse to try and pull up something in the computer, but apparently there was not an order on file for this anti-biotic. So, the nurse phoned Dr. B. back, and then Dr. B said she would call Dr. C. (the Dr. at the dialysis clinic).

And, sure enough, when I check around 12:15, the clinic had the order.


It's Friday, and we just can't put this off until Monday.

Yea!! Score one for the caregiver.

Worrying about Incision

G had surgery a little over a week ago. It was a 4 hour surgery in his right upper leg. He has 1 incision about a foot long from his knee up the inner side of his thigh. Then an incision about 6 inches long across the very top of the leg, and then one little incision on the top of his thigh.

They showed me how to change the bandage before he left the hospital, and gave me supplies. The dressing is to be changed every day, and every day I get a little bit better at applying the bandages. It's really quite easy, with no-stick pads, some paper tape, and then a couple of stretchy net tubes which holds everything in place.

However, yesterday G said that his incision area was hurting. That really got me worried, because the last incision got infected.

As I have no medical training, I am a bit unsure of what to look for, what is normal, etc. I always spray the incision with the cleanser they gave us.

I'm still not sure what caused G the pain. From what I can tell everything looks basically OK.

He goes back to the surgeon on Friday, so I think everything will be OK until then.

On another note, 2 days ago he said "bring me some (couldn't remember word)...tweezers". I brought him some, and he showed me a stitch that had come out of this arm where the previous surgery had been performed (the one that got infected). Apparently a stitch had worked it's way out. So guess they didn't use that material that dissolves, and probably the reason for the infection were stitches that had not been removed.

He tried to pull it out,then I tried to pull it out, then I saw there was a loop, so I cut it, and then pulled out the stitch. There was blood, which G immediately blotted, I ran for a gauze pad, and then some strong tape.

Good thing we have lots of supplies in the house.

Playing Mom

This post is about my family, so if you are here to read about G, you can skip this.

After my Mom had her stroke about 4 years ago, in some ways I became the "Mom" of the family. No matter how old one's Mother is, she is the one who holds the family together, worries about everyone, settles disputes, etc.

And now I feel a bit in the roll of Dr. Mom.

About a week ago my sister (with whom I am not close) phoned to tell me she had swollen feet and ankles after standing all day, substitute teaching. I told her this was a sign of a heart condition. She didn't want to believe me.

Four days later she phoned to say she was in the hospital, went to the emergency room the night before with chest pains, elevated blood pressure. They did a heart cath, and she has a 50% blockages in the heart.

This is no surprise to me, or my other siblings, as she is overweight, doesn't exercise, and the only thing green she has eaten in the last year is a spinach cheese dip with tortilla chips.

Then yesterday my brother M phoned. He has been sick with various things for the last month. He said allergies, I said pneumonia....he has been to the Dr. 2 times, and now went to the emergency clinic the day before. Now he has stomach problems. I told him to eat a bland diet (he had stomach problems, but then went to a festival and ate nachos and drank coke, then threw up LOL), go buy Benefiber and take it 2 times a day until his bowels get cleared out and regular.

I just now sent him a follow-up e-mail to see how he is doing. At least he will eat fruits and vegetables, although he probably does not.

And, my oldest brother has been sick. He was taking anti-biotics, so hope it's cleared up. He is suppose to be flying this weekend, so will check in with him.

Not that I should be worrying about all these people, but, if they do end up in the hospital, I will be worrying.

Can't help it.

Waiting for Transport

Normally a Van comes to pick-up G around 10:00 for dialysis. If it's the VA Van, they come at 10:10. If it's the company the VA contracts with, they come at 10:00.

This morning, by 10:08 no one was there. So, I called the VA. They said the contract company was to come, they would call and check.

Finally, when no one phoned me back, and I tried 3 times and could not get through to the contact at the VA, I phoned the contract company directly (just happened to get their phone number last week). They called back quickly, apologized, said it was their fault (at least they admitted it).

A couple of weeks ago no one came to pick up G for some appointments at the VA. This, despite the fact that I phoned at 8:00 to confirm there would be a pick up, and then 3 times close to the time he should have been picked up.....finally someone got there so late G just cancelled. And, no one took responsibility, but I was pretty sure it was the VA who screwed up.

Anyway, someone finally showed up about 10:25. G would be a little late getting to dialysis, but not too much.

Hope things goes well today. The catheter didn't run too well on Friday. G says it ran better in the hospital, where he was flat on a bed. So we sent a couple of pillows with him today, hoping they can put these under him in the recliner to make him "flat".

Fingers crossed.

Poop is Important

OK, if you are the kind of person who does not like to talk about poop (although Oprah and Dr. Oz have made it acceptable), don't read this.

A couple of weeks ago one of my friends was hospitalized for an impacted colon. He said he had back pains for 4 days, and thought it was a back problem.

He's a guy, and I have known of 3 guys who were hospitalized for the same problem, so it's not something to be taken lightly. One can die from an impacted colon.
He was in the hospital for over a week. They managed to get it cleaned out and infection cleared up (yes, there was stuff stuck in the pockets of the colon, and it was infected), with intravenous anti-biotic, and by passing a tube through the colon during a CT scan to clear out the blockages.

Not fun.

Constipation is a serious problem for someone who is ill, bedridden, elderly. I know when taking care of my Mom it was always a problem.

Anyway, pain pills cause constipation. G had a problem when he had by-pass surgery 4years ago. He doesn't normally have a problem with constipation, so he always forgets it can be a problem.

And, now it is. I won't go into details, but it's a problem. And, it just hit me a couple of hours ago that he has back pain, so went to lay down.

There is nothing in the info on the internet saying back pain is an indication of a backed up colon, but as it was with my friend, I am thinking it could also be with G.

So when he wakes up from his nap we will get a bit aggressive.

Good bathroom habits are important, no matter what one's age.

Remember that.

G Gets Hearing Aides Adjusted

Yesterday while G was at dialysis the VA called to see if he could make a 9:00 AM appointment on Saturday to see the audiologist for his hearing. He received a letter last week saying they were booked up for 2 weeks and would let him know....but apparently someone decided to work on Saturday to clear out the backlog.

I check to see if he could get transport, he could, so appointment was made.

I noticed when I first met G over 4 years ago he had some hearing problems. Finally, a couple of years ago he got an appointment to get his hearing checked.

He was on a Destroyer in Vietnam, and his job was to load and fire the "big guns", a very noisy job. I asked him if the Navy gave him ear protection, and his reply was "are you kidding? They didn't even give up gloves".

So, no wonder he has hearing loss.

Anyway, he got hearing aides from the VA. He has hearing loss in the range same as women's voices (nice excuse to not hear me). He wore them for about a year, but then he couldn't find them. When I was cleaning up his office after his stroke, I found them, so at least he had them to take with him to the appointment.

His hearing has gotten worse. He noticed it after the stroke, that the right side hearing is affected, just like everything else on the right side.

They adjusted his hearing aides, and when he came home he complained he could hear "too much". I know it has to be a big adjustment. Also, sometimes hearing aides just amplify everything, so we shall see how long he wears them.

At least he has the option, because sometimes I have had to shout for him to understand me, and that's no fun, along with everything else.

Anyway, he came home, we sat on the front porch, and later I took him down the wheelchair ramp and he planted some herbs in the raised bed.

He is doing much better. Able to get in and out of the bathroom on his own, into bed on his own. Such a big improvement in just a day.

We received the invitation in the mail today from his daughter for her College Graduation. It's over a month away. I really hope we can go, but who knows. It's a 2 day trip from here, and would require G getting dialysis somewhere else...
so I doubt it would be a good idea to go.

We didn't talk about it.

G said he will work on his painting this afternoon, after a nap. It is an abstract. He has an artistic side, so I will be interested to see the finished product. Since he can't write or type anymore, this gives him another outlet.

G Came Home Last Evening

G came home around 6:00 PM yesterday.

It was a bit of a rush to get him released. The surgeon came in the morning, and said he was OK to be released as per surgery, but the attending Dr. had to sign off.

So around 1:30 I asked the nurse to notify the attending that Gary hoped to get released, that I would need instructions on how to change the dressing, and a bedside commode.

Finally around 3:30 the Dr. showed up, along with about 3 other people. Apparently physical therapy did not think he was safe to be released. But, that's because they had worked with him on Tuesday and Wed., and he was quite bad those days.
After they took him off the heparin drip Thursday morning, he was much better (which we only made the connection last night). He is able to "transfer" from wheelchair to sofa, etc. on his own, so he is OK in the house.

Meeting with the hematologist went well. At least G and I feel like we are now talking with a Dr. who might be able to do something. The renal Dr. has done all that she can, and as I told G, her job is to take care of his kidneys, and she shouldn't be expected to take care of blood clots in other parts of his body.

The hematologist confirmed there are severe blockages in the left side carotid artery, that is almost fully "excluded" (I guess that's the word he used) (**correction, I realized the next day he must have said "occluded", as in "shut up") , meaning it's almost totally blocked. This of course explains why G is losing word usage day by day. They made a follow up appointment for June, when they will do another CT scan to see if any change in blockages. As G is now on Plavix, perhaps it will have some effect.

If not, and if his sites for dialysis are OK, I suppose they will consider vascular surgery to clear out the blockages. Although, the risk of such a surgery scares me, but will cross that bridge when we get there.

The main thing is if the current catheter continues to function for at least the next 6 weeks, and hopefully by then the fistula in his leg will be able to be used.

Fingers crossed.

Hospital Release Date Unknown

I asked the care plan nurse when they might release G. She thought not until next week, but of course, it's not up to her.

G says he can't walk, but then I figured out it's because of the pain from the surgery.

If he can at least stand enough to "transfer" from bed to wheelchair, etc., I will want to take him home. I know he will feel so much better at home.

The hematologist will come tomorrow between noon and 4:00, so I will have to hang out at the hospital during that time.

I also asked about a lift for G, if he cannot walk at home. I had one for my Mom, but never figured out how to use it, so if I can get some training on how to use a lift, I will be better prepared, should I ever need to use one.

Not much else. Hope the surgery works.

Quick Update

Here are the highlights the last couple of days

1) Operation appears to be successful. It took 4 hours. Before the surgery they were worried if there would be enough blood supply to the foot after doing the surgery, because they were taking a vein and looping it back up. But, the surgeon said after the surgery the foot had good blood flow.
(G only figured it out later that he could have lost the foot)

2) This morning, the nurse noticed G was unresponsive, asked her to feed him, unaware he could use his left had. She ordered a CT scan. No sign of new stroke, just the same area, but G says he is much worse. He thinks his right arm is about 18inches further to one side or the other, that it actually is. He said in the past he thought it was about an inch off (which he always must compensate for)

Hope this is temporary.

3) They started him on Plavix and Warfin today. Heparin IV continues as well.

4) Nurse for Care Plan came by.... wanted to know if going to the VA nursing unit upon discharge was a option..we said no (and gave her an earful of the problems we had there) Said G will come home, and at least she is offering home health aide, which will be great.

5) Nurse also suggested, forward thinking, about "palliative care". G said that would be a good idea to talk about it. This is the first time he has acknowledge that he might not get better.

6) Finally got a consult for a hematologist. Not that it will do any good, but I certainly want to be sure I have covered all the possibilities. If they can't get these clots to clear up, G doesn't have much of a chance.

G in hospital until Wednesday

G has been in the hospital since Friday afternoon.

Friday evening, his blood pressure was up over 200. They had not given him any meds, which he normally takes after dialysis. Also, just the whole experience of being in the hospital, having an IV put in, etc., I am sure didn't help his blood pressure.

When I left at 7:30 they had taken it again, and it was still over 200.

I guess this continued until about 10:00, when they decided to send him to telemetry unit to be monitored closely. G said it was because he had a lazy nurse who couldn't be bothered to take his blood pressure every 20 minutes.

Anyway, G called me to tell me he was being moved, and then a little later someone from the hospital called me to tell me he was being moved. At least they managed this.

After about 20 minutes I phoned telemetry to get a status report. I actually knew it was too early, but wanted them to know that someone was paying attention.
I happened to have recognized the nurse on the phone (and also recall she was not that great). She said she was just getting ready to call the Dr.

I phoned her back an hour later to find out what was going on. His blood pressure was still high, they were giving him some more meds. They wouldn't start the heparin until his blood pressure got below 180.

I was really worried, because now his blood is thick (INR of 1, when it should be 2-3), and with high blood pressure, he could have another stroke.

Anyway, the good news is around mid-night they got it under control.

The next morning they moved him back to his room in the regular part of the hospital.

That evening I brought in his laptop computer and we watched a movie together. It helps to make things seem a bit normal. I know just being confined to a hospital room with a IV drip isn't fun.

Apparently this morning the Chief Dr. told the residents during rounds (this being the first day of the month they get in a new groups), That G would be in the hospital until at least Wed.

This was news to G, who thought he would be out on Tuesday. Apparently they want to keep him until he has migrated from the heparin to the coumadin, and his INR levels are back to what they should be.

Oh, and some good news. His catheter ran better on Friday than it had on Wednesday, so maybe it will hold out long enough for a fistula to get going.