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Life is copacetic… (knock on wood!)

June 22, 2009 3 comments

Actually I am afraid to say that things are fine, since that is usually a good way to cause things to take a spiral into the mud! And I would hate for that to happen.

Mark’s dialysis has been going pretty well. He says that they are taking about 5 pounds of water each time he goes. They said that they need to take more water because he is still retaining some water in his ankles. They said that his eyes look a bit puffy too which is a sign of water gain.

He says that he has not had any nausea or vomiting in the last two sessions, which is always a good sign!

After his dialysis treatments, he is telling me that he feels “good”. I have not heard him say that in a long time! He seems to be sleeping better, looking better, and of course feeling better.

We are both feel that he needed to start dialysis much sooner than he did, but you can’t change the past. He seems to be getting back to his “normal” self. He is back to joking around. He laughs again. I did not realize how little he laughed until he started doing it again!

He cooked again this weekend, and I could tell it was not something he was “forced” to do, but he did it because he wanted to do it.

The school year has ended, as of this past Friday. He only has to work a couple of weeks in August, so the rest of the summer will give him some time to relax, and get his doctor stuff out of the way.

He is going for his cataract surgery on July 8th. This time the appointment is at 11AM, instead of 8:30. He would have waited until August, but his labs and EKG (pre-admission testing) is only good for 60 days. Since it would be dumb for him to wait and re-do all that testing, he is going to take the 11AM appointment. Not sure yet how we are going to deal with the transportation. Mark suggested he take a cab there (only a few miles down the road) and I could pick him up when he is done. We are trying to avoid using up all of my vacation days this early in the year.

During the summer, on one of my Fridays off from work, we will make an appointment to go to the Transplant Center and discuss our options for a kidney transplant. I don’t know how that works, but we do know that he needs to lose quite a bit of weight before he can qualify for the surgery.

Mark also told DaVita that he was off for the summer, so if they had an earlier appointment available, he would be willing to go in at an earlier time. I do not know how often they will call him, or if they will even call, but it is an option. It would be nice if he could get in during the day, or even early evening so that we can spend more time together.

Mark also asked to be put on the waiting list for earlier appointments. Since school lets out at 2:55, he can be at the center for a 3:30, 3:45 or 4PM appointment. That would be a good thing so that Mark can go there directly after work, and not have to come home for an hour and just wait to go.

We are finding that we are getting home about 10:30 from dialysis, and by the time we are getting to bed, it is well after 11PM. Now that is fine for me, but not good for Mark, who has always seemed to need (much) more sleep than I do.

Today will be the first day that they use the AV Graft in Mark’s arm. He is a bit hesitant about using it since he is worried that he will have the pain and numbness that he had when it was first done.

Hopefully it will work well with enough blood flow, and he can have the Catheter removed and actually be able to take a “real shower”!!!

I guess we will see what happens. I will keep good thoughts that the graft works well, and he has little to NO discomfort at all.

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Categories: DaVita Dialysis, dialysis

Report Card Day!!!

June 16, 2009 Leave a comment

acuvue-bifocal-contact-lenses-lgWell, it’s apparent that The Daily Dialysis is not a daily thing! But I do try to keep things updated! Our weekend was quiet, but good. On Saturday we had our usual Saturday errands to run, plus I had an eye doctor appointment for a contact lens fitting. I am attempting the Acuvue Bifocals by Johnson and Johnson. They are supposed to be moisture enriched (which is good for my case of Chronic Dry Eye Syndrome) and also protect the eyes against both UV-A and UV-B ultraviolet rays. I was able to wear them for about 15 hours yesterday with no problems.

Mark was feeling pretty good this weekend. For the second week in a row, he actually felt well enough to cook real food! For the longest time, if he did cook, he would make very simple meals. It was obvious that he was not feeling all that well.

ReportCardLast night he got his first DaVita Report Card. The results, according to the dietitian, were overall pretty good. Without going into major details, the results were as follows:

Albumin (helps with wound healing and prevents infection) was 3.4 (LOW) – More protein in his diet will help this increase

Hemoglobin (may cause weakness and tiredness) – this should increase as he is receiving Epogen medication during his dialysis treatments

Iron Saturation (helps maintain red blood cell count) is good

Ferritin (stored iron) is Good

Calcium Corrected (for healthy bones) is Good

Phosphorus (controls heart health and keeps bones healthy)  is VERY GOOD

CAxPhos Corrected (Calcium x phosphorus = product – keeps bones and heart healthy) is GOOD

PTH Intact (Parathyroid hormone) is VERY HIGH. This high number puts him at rish for bone disease. Vitamin D is being given during his dialysis treatments to help lower the PTH.

Potassium (keeps nerves and muscles, like the heart, healthy) is GOOD

spKt/V Total (the adequacy of the dialysis) is low. This measures how well the blood is being clean by  the dialysis treatments. This number will be checked again next week.

Cholesterol is GOOD (154).

Glucose was 296…. very high. Mark claims he does not take his insulin before dialysis because he can’t eat until he gets home. Therefore, the insulin (which is a once day, long lasting type) is almost out of his system, causing his blood glucose to be high.

HGB A1C (GlycoHGB) – This test measures the amount of sugar that attaches to red blood cells in the past three months. Mark’s results were 5.2. That is VERY good glucose control

Over all, I found his result to be pretty good — except for his very high PTH. However, having hypoparathyroidism due to a parathyroidectomy (in 1991 and 1993), I know a lot about PTH. It can be controlled with Vitamin D…. so hopefully that will get under control. As for the rest of his tests which were “off”, I am thinking that once he gets more time on dialysis, the numbers will get better. The dietitian said that they would take care of getting the numbers on track from their end. His diet seems to be under control since his Potassium and Phosphorus were good. I don’t think that they do the sodium, which is ok since we will just cut back on adding salt in our diet.

Overall things seems to be settling down a little bit. Mark seems to be feeling better. He has good days, and bad moments. He seems to have more energy. He laughs more. He does not fall asleep at the drop of a hat. And he seems to want to join life again. All of this is a good thing. I am still worried and unsure of the future, but I am hoping that this will abate as his Report Card improves.

Yesterday we also went to the Vascular Surgeon for a follow up visit. The vascular surgeon was very polite but not a talkative guy. He was pleasant enough, but not my kind of doctor. I prefer someone who is “warmer”, if that makes sense. But he answered Mark’s questions. He told him that the numbness in his hand was somewhat normal. He thought the AV Graft was healing nicely and said that Mark could have the dialysis techs use it starting next week, and see how things go. He said to give it a week, and if the techs felt that the blood flow was good, then he could have the catheter in his chest taken out. We just have to make an appointment with his office, and it would be done in house. A simple procedure.

Mark is being pretty good with his diet. I know it is hard for him being that he has eaten junk and bad foods for a long time. He has a list of foods that he can’t eat because they are too high in salt, potassium, and phosphorus. Some are foods that he likes a lot…. others he will never miss. But it is not that he can’t have them, but he must have them on a limited basis. For example, he can’t have bananas (and he loves them) too often because they are high in potassium. He could have a small banana once a week, but not a large banana every day. The same goes for fast food and snacks. He can’t eat them regularly, but a Big Mac and some fries would not kill him.

Things seem a little more stable these days. The future is uncertain, but I am trying to be hopeful!

Categories: dialysis, Vascular Surgeon

Cataract Bye Bye… BP Whacked… and Tired Wife!

June 12, 2009 Leave a comment

Since my last posting, Mark had cataract surgery in his right eye on Wednesday morning. I had hoped he would postpone it with everything that has been going on, but he did not want to.

Cataract Surgery

Cataract Surgery

The whole procedure was supposed to take 45 minutes from start to finish. I should know by now that nothing ever goes as planned! We got there on time, and the nurse checked us in. However, the doctor was not able to get an IV line into him for the Twilight Sedation. They wanted to use his catheter, but they needed to contact DaVita to see what to flush it with. I was able to find the local phone number, and they were going to call.

The doctor came out again, and said that DaVita told them that they needed to contact his nephrologist for permission to use the catheter. When Dr. DeSimone called back, he told them not to use the catheter at all. So the doctor was forced to give him the shot intramuscularly. All of this just killed more time.

I did get to watch the procedure on the monitor. It was quite interesting, and not gross at all. The nurse explained to me what the doctor was doing while he did it. Quite a unique experience. We finally got out of the office after 11:00AM.I was really stressed because of the time that I have been losing from work due to all the doctor’s appointments.

After work, I had to rush home (leaving a few minutes early so that I do not get stuck when the drawbridge opens – every hour on the hour) to take Mark to dialysis. He called me about 9:45PM to tell him that I could leave the house to come get him. When I got there, I had to wait because he was not ready. After a few minutes, I called his cell, and he told me that he would be out in five minutes.

When he got to the car, he told me that they said his blood pressure was too high, and they were going to call Dr. DeSimone. Supposedly his blood pressure was 190/100. He insisted that it is not that high and that the automatic blood pressure machines always show an elevated reading. He was going to leave anyway when Dr. D. called. He simply told them to tell Mark to take his BP meds when he got home.

Blood Pressure Cuff

Blood Pressure Cuff

We did check his BP when we got home with the manual machine, and his BP was much lower than what the Technician had read. I understand they are being cautious, but it was frustrating because it was already a long day for both of us.

Then yesterday (Thursday), Mark had to go back to the eye doctor for a re-check. Of course with the patch on his eye, he could not drive. Again this required me to take MORE time off from work. I hate to use all my vacation/sick time up on his doctor appointments. I am lucky enough to be able to make up my hours by working on the evenings that the office is open late. However, with his hospital stay, his cataract surgery, and dialysis, I was seriously delinquent on hours. So to make up for my loss, I needed to work until 8:30 last night, come in early this morning, and take a shorter lunch. I think I made up my time (or I am very close), but I am exhausted!!

Asex-and-the-city-the-movie-poster-2gain tonight is dialysis, but I am going to take some “ME” time. I will have a light dinner and something sweet for dessert. Then I want to watch the movie Sex and the City (we never saw it because we have been waiting for the Blu-Ray DVR, which will come after we get the LCD TV…. sigh… don’t want to wait anymore) and do some knitting. Sounds relaxing, huh? I will do work and stuff over the weekend – or some other night!

Categories: Uncategorized

My Personal Views and Thoughts

June 9, 2009 1 comment
We Need to ALWAYS be this happy!

We Need to ALWAYS be this happy!

While I am not the one suffering from End Stage Renal Disease, I do live  day-to-day with the disease and all of the problems that go with it.  I may not be doing the dialysis, but I watch Mark deal with it, and it takes its toll on me.

This is more than either of us could EVER have bargained for. I think Mark handles all of this stuff better than I do. But then again, I do handle my own health issues better than I handle Mark’s issues. Maybe it is the same for him? If I were in this situation, would he be feeling overwhelmed like I am?

I know that at some point Mark would like to do Home Dialysis, but from what I have read, I become the Caregiver for the entire time. I must learn about dialysis, and what to do in case of problems. I would have to put the needles in his arms, and I am pretty sure I would not be able to do that. I am hoping that Mark will lose the weight he needs to lose and get a kidney transplant. It will be better for both of us.

However, in the meantime, I think I need to use the “free time” (also known as the 4 hours a day, 3 days a week that he is at dialysis) to do productive things! I have over 12 hours of ME TIME! I should further my education, promote my business, earn some extra money, learn a skill/craft, etc. Just do anything that would better ME, and make me feel better in the long run! Maybe find a Support Group of some sort. I am sure that other spouses of Chronic Kidney Disease (CKD) are feeling the affects that I am. I need to research this. I am sure there is something out there.

I also think that — after Mark gets settled into a routine, I need to let him:

  • Take care of himself whenever possible.
  • Understand the Ins and Outs of dialysis – especially how it affects him and make sure he knows all this
  • Be responsible for making doctor appointments
  • tell his family and friends in his own manner when he is ready

For me, I need to remember that:

  • I am not Mark’s nurse or doctor
  • he will have some limitations and days when he does not feel good
  • he needs to know my fears and anxieties
  • he is not my “poor sick” husband – many people live fulfilling lives on dialysis
  • prepare for changes in care and lots of doctors appointments, but also let him know he needs to be independent and manage his care

Having said that, I know that moral support is very important. The more supportive I am, the easier all of this will be – for both of us. It is hard at times because I worry so much about him.  It is hard NOT to worry. I guess I can’t worry about if he is going to live or die, get an infection, get a kidney, reject a kidney, etc. I  have no control over what happens to him — or to myself – or anyone for that matter. Would you believe that I wake up in the middle of the night to check to see if he is breathing? Is that pathetic or what? I think it is time to put ME first because otherwise I am no good to him.

Categories: dialysis, kidney disease

Irritation… Frustration…I’m BEAT!

June 8, 2009 Leave a comment

So today was Mark’s second day of dialysis. I just dropped him off at the hospital and went home. I didn’t see much point in sitting in the waiting room for four hours with nothing to do! We made really good time getting to the Center. I left work at 5PM, and we were in Perth Amboy before 5:30, not bad considering I had to go home, and then go right past work to get to the dialysis.

I took the back roads home so I could avoid the horrible traffic on Route 9/35. That always just backs up, and well, anyone who has driven with me knows how impatient and irritated I get when people do not know how to drive!

Mark’s dialysis did not start on time. His appointment time is 5:45, but he said that they did not start until a few minutes after 6PM. That, of course, makes it late when it comes to picking him up. I really do not like going out late at night considering I don’t see well at night! I wanted to bring Belle with me, but I figured that can wait a bit — it’s not too much fun putting a 70 pound dog into a car!! LOL

Mark said that his AV graft was hurting all through dialysis. The technician suggested that he lie down, but that made him nauseous and he puked. Of course you are hooked up to the machine, so there is no where to go. So he not only puked on himself… but also the technician!! I am sure that they have seen it all!! And experienced it all.

The social worker left him his “Welcome Package”. He gets a DaVita bag, a blanket and pillow, headphones, and a book about DaVita. He was a bit disappointed that he has not had the chance to talk to her. He wants to get on the waiting list for the Holmdel Center because it is much closer to home. But he has to go through the social worker for that. She did leave him a message that she would stay late one night to meet him. Hmmmm???

Mark is getting his cataract surgery on Wednesday morning for his right eye. We have to put 2 different drops in his eyes 4 times a day. He is not very good at putting drops in, and he says he needs me to do them because he “misses” a lot. I wish he had postponed the cataract surgery until school let out, but who am I to tell him what to do?

I don’t want to whine anymore than I have… so I think I will finish up this tomorrow… I don’t think 11PM is a good time to be writing…. I think I need more sleep. I have been running on about 4 – 5 hours a night… More on that subject later!

A Pretty Normal Weekend!

June 8, 2009 2 comments

wendys_logoWho knew that we could have an “almost” normal weekend? After Friday night’s dialysis, the weekend turned out pretty good. When we got home on Friday, we stopped at Wendy’s for Frostys. Mark said I was very patient and a “good Boo Boo” so we treated ourselves.

We just watched some TV, and we talked about the dialysis, and what went on when he was in the Center. I didn’t have much to say because I felt a little out of the loop since I sat in the waiting room for almost four hours with little to do!!!

On Saturday we got up about 9ish, and Mark said that he actually felt good. I can’t remember the last time he felt good! That was amazing to me!! We went out to run errands. We needed to go grocery shopping, which was pretty interesting overall. We had to buy foods that were low sodium, low phosphorus, and low potassium. I think Mark will miss bananas and cola a lot. Those were the things that he whined about the most!

We ran other errands, and Mark actually didn’t fall asleep between rides to different places!! Again, I can’t remember the last time that happened!! When we got home, Mark actually cooked!! He made a couple of chicken dishes. We bought a couple of varieties of Mrs Dash seasonings, although Mark said he was going to miss the salt!! I think after a while he won’t even notice that the food is not salty. He always salts his food, sometimes before he even tastes it! I never quite understood that.I was never a salt person. I do like salt on sliced tomatoes, corn on the cob, and french fries. Everything else can be without salt!

Anyway, he made a couple of chicken dishes and a beef dish with potatoes. It’s funny that all the foods (or at least a lot of them) that we were told were “not so good for us” are the things he can eat on a Renal Diet! We used to try to eat Brown Rice instead of white rice. But the brown rice has a high phosphorus content, so white rice is better. He can eat potatoes, but they have to be dialyzed. We have to cut them up in to small pieces and soak them in water for 3 hours (or overnight) to remove the phosphorus. It was not such a big deal, but I think he is going to miss baked potato, which he will no longer be able to eat.

For dinner we had turkey burgers, and “french fries”. It’s a different way of eating for him, but overall, I think he is doing pretty well. He says he does not have as big an appetite as he did before he started dialysis. That is also good because he stands a better chance of losing the weight that he needs to lose. It also helps me stay on my Weight Watchers Plan.

We did take a short nap after all the cooking was done. It is something we enjoy doing on the weekend when time permits. Some weekends he was napping for 3-4 hours, and I would just read while he slept. But he woke after about 90 minutes — which was actually before I awoke!! Who would have guessed!

Belle's Stair Runner

Belle's Stair Runner

Sunday we got up and went out to Home Depot. We needed to buy some carpet treads so that Belle can get up and down the stairs. She still favors her leg, so stairs are not good. We were both so afraid that she would take a tumble and get badly injured. So we thought some carpet treads would be good for some traction. The treads were too small though, and they did not have any longer ones. The employee suggested we buy a runner and staple it to the hardwoood floor. We really did not want to put down more carpeting, but we really did not have much choice! The things we do for Belle!!

We bought the runner, and some staples for our Heavy Duty Staple gun, and we went to work. It didn’t take long, and it was pretty easy to work with. The runner looks really nice, and you can still see a part of the floors. Not my ideal look, but it is what it is!

We took a nap again yesterday! Did I mention that we love our naps?? But again, it was not a long nap. Then we came downstairs, watched some TV and had a nice dinner. Mark said he was feeling pretty good, and did not fall asleep at any point during the evening.

This morning was a work day for both of us. Mark went back to work. He said he was feeling good, and wanted to work for the last 2 weeks of school. Who am I to object? After all, I am hoping that if he does not feel well, he will come home and not push himself too much.

I packed him a healthy breakfast and lunch. I am hoping that he will eat a nice meal for dinner. He has to eat before I get home because he has dialysis tonight.

We decided on a plan to deal with dialysis tonight. I am going to take him to the Center, and just drop him off. He will ring the phone when he is almost finished, and I will leave to pick him up. I figure that after a week, if he has not “after dialysis” symptoms, he can go on his own. But for this week, I will take him and pick him up.

It is tiring though. It is a lot to remember his food restrictions. His bandages on his catheter need changing or “repairing” regularly. I am hoping that he will take some more control of all of this, and I will have a bit less responsibility in his personal care. That is my hope.

Categories: dialysis

Long Night…. Who Cares for the Caregiver?

June 5, 2009 3 comments

Dailysis Treatment #1 at DaVita is now in the history books. It was not at all what I expected that it would be. The center is located on the first floor of Raritan Bay Medical Center of Perth Amboy. It was a large room with lots of chairs (sort of recliners) with dialysis machines. It seems a bit cluttered, but I guess that is normal.

They make you weigh in when you get there, get your dialysis, and weigh in as you are ready to leave.  I met with the dietitian. She was VERY nice, and gave a lot of information about the diet that someone with kidney disease needs to follow. Basically a person with renal disease needs to watch sodium, phosphorus, and potassium intake. She gave pages of information, brochures, and websites that have all sorts of information. It was crazy! You could read her literature forever!

I was not allowed to stay with Mark while he was having his treatment. I sat in a waiting room. It had a TV, but the problem was that the station was on some Ghost Hunters show. I was the only one there, and I wanted to change the channel. There was no remote, and the TV was positioned too high for me to reach the channels. It was kind of boring, and it was very lonely. For 90% of the (over) four hours, I was alone. I wondered what was happening with Mark, and how he was dealing with the dialysis. I felt like I was missing out on important information about his care. No one really talks to the caregivers. I think we are pretty much on our own. I think I expected someone to give me an update about how he was doing. But that didn’t happen. It is funny how we have a perception of how we think things will be, and when they are not like how we think it is, we are disappointed, and we feel let down.

Oh, and we were supposed to go to the Center for 5:30 today. I decided to leave the office at 4:30 so we could get there, find the Center, and get registered. Mark called me at 3:00 and told me that his appointment time was changed to 4:00PM, and I had to leave work now. I was irritated because he should have consulted me before he agreed to change the appointment. I have been shuffling my work hours around his doctor appointments and test, and making up time to keep my weekly minimum. I willingly offered to go with Mark to his first few appointments at dialysis until he got accustomed to it, but it was wrong for him to change the appointment knowing that I was going to just have to leave the office immediately.

But it’s not about me, is it? It is all about him because he is the one with the End Stage Renal Disease. He is the one enduring the dialysis. He is the one with the graft in his arm. He is the one with the temporary catheter in his neck. But let me ask you, who cares for the caregiver?