There is another side to this whole chronic illness thing that I don't believe I have addressed...how an illness such as this affects your spouse and family.
Yesterday, my wife had a meltdown day; something I quietly let her go through so that she keeps her sanity intact. Why? Because if I don't, her well-being comes into question. Remember, the spouse of any chronic patient no longer shares the duties and responsibilities of the household. The spouse is thrust into the role of caregiver, primary decision-maker, household income provider, and--depending on the type of illness or injury--full time caretaker of the house. Add on single parent, if children are present, as well.
As a chronic illness patient, it is our responsibility to help our spouse as much as we are physically able to do. If that means getting a little tired doing housework, taking care of kids, etc, then that's what we do. If they need to help pay bills, then discuss finances with your spouse, making a mutual decision on all expenditures, and then help with getting the bills paid. You must help your spouse whenever and however you are able.
This also includes patience when your wife or husband has a day or two when they are just worn out and need that rejuvenating mental break. They may get angry with you; they may curse at you; they may tell you that they have no hope that anything will ever change. When this happens, I suggest that you leave them alone--they'll likely demand this--and withhold any judgments or condemnations, allowing your spouse to vent and release that stress that has obviously built up. If you react negatively to this stress release, I guarantee that you will only make things worse.
Look at it this way...
If the roles were reversed and YOU needed to de-stress from all of the added responsibilities, how would you feel if your chronically ill spouse looked at you, shrugged their shoulders and told you to just suck it up. How would you react?
I know that everyone is built and programmed differently. But if we, as patients, ignore the well-being of our spouse, our lives will be negatively impacted in numerous ways. So on the good days, laugh, joke, enjoy each others' company, and share your thoughts and feelings as the opportunity arises. But on the bad days, give your spouse the space, the respect and the understanding they need so that they continue to be of service to you and your household. And if needed, get yourself and your spouse to group support meetings so that both of you can take advantage of any opportunities there, as well.
One thing I do for my wife is basically kick her out the door when she has chances to go do things with our [adult] kids or one of her friends. She needs to get away from the home--and taking care of me--as much as she can. She needs that time to do something normal without worrying about how I'm doing 24/7.
In these times she knows that I can always get a hold of her at any time. We both have cell phones with unlimited texting just in case I need to contact her when she's in a movie (for instance). Having this option helps my wife relax whenever she is away from the house for work, errands or when I kick her out to have some fun.
Lastly, I am of the opinion that while I can't get away from this illness, there is no reason why my wife can't get that much needed time away. Now, I realize that that is a redundant statement, but I am simply trying to hammer home the idea that your spouse needs the chance to have the mental break; so be sure they get it!
Wednesday, June 26, 2013
Monday, June 24, 2013
23 June 13
Time is flying by! It seems like only a few days ago since my last entry; but then I look at the date--June 12th--and realize I was wrong...
Dialysis Weights:
13 June 13
Starting Weight: 105.2 Kg
Ending Weight: 104.5 Kg
Water Removed: 0.70 Kg
15 June 13
Starting Weight: 105.9 Kg
Ending Weight: 104.2 Kg
Water Removed: 1.70 Kg
18 June 13
Starting Weight: 105.8 Kg
Ending Weight: 104.0 Kg
Water Removed: 1.80 Kg
20 June 13
Starting Weight: 106.0 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.90 Kg
22 June 13
Starting Weight: 106.0 Kg
Ending Weight: 104.4 Kg
Water Removed: 1.60 Kg
My weight has risen nearly a kilogram on my off days, but I think this is due more to my cysts than anything else. My diet and fluid intake remains consistent; but both flanks have had a significant increase in pain again, which means that the cysts on my kidneys are once again enlarged and holding more fluid.
As a result of the flank pain increase, my T3 usage has also increased. Earlier in the month my average daily usage was at 3.1 tablets per day. Because of the increased flank pain, that jumped to 4.33/day. This weekend, the flank pain is worse than I remember it being up to this point. Sitting, standing, laying...it makes no difference. I am hurting pretty well even with the pain med.
One of the dialysis techs who regularly works with me is married to a renal transplant patient. In fact, it was because she had to learn to help him do home hemo that she became a dialysis tech! Anyhow, she is a fountain of information for me. This past Saturday she was telling me that post-transplant meds must be taken at exactly the same times every day, without fail. If for some reason you are sick and cannot keep your meds down, then get into the transplant team immediately so they can put you on IV meds until you feel better. It's those bits of info about my future that are incredibly valuable. Any such things I learn will always be passed on to you.
*Remember, educating yourself about everything that is coming up--no matter where you are in the process--will help you deal with decisions, absorbing incoming information, etc, so that you make the very best care decisions for you, and to help your loved ones understand what is happening with your care plan. The more you know, the easier this becomes from a mental/psychological standpoint! (Which, or course, affects your physical well-being, as well!)
My full labs were taken this past week...again...and everything is looking great! I won't go into the numbers because I save that for the top of the month labs. I just wanted to let you know that I am still as healthy as I can be.
That's all the news I can think of. Enjoy your upcoming week!
Good Health to All!
ScottW
Dialysis Weights:
13 June 13
Starting Weight: 105.2 Kg
Ending Weight: 104.5 Kg
Water Removed: 0.70 Kg
15 June 13
Starting Weight: 105.9 Kg
Ending Weight: 104.2 Kg
Water Removed: 1.70 Kg
18 June 13
Starting Weight: 105.8 Kg
Ending Weight: 104.0 Kg
Water Removed: 1.80 Kg
20 June 13
Starting Weight: 106.0 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.90 Kg
22 June 13
Starting Weight: 106.0 Kg
Ending Weight: 104.4 Kg
Water Removed: 1.60 Kg
My weight has risen nearly a kilogram on my off days, but I think this is due more to my cysts than anything else. My diet and fluid intake remains consistent; but both flanks have had a significant increase in pain again, which means that the cysts on my kidneys are once again enlarged and holding more fluid.
As a result of the flank pain increase, my T3 usage has also increased. Earlier in the month my average daily usage was at 3.1 tablets per day. Because of the increased flank pain, that jumped to 4.33/day. This weekend, the flank pain is worse than I remember it being up to this point. Sitting, standing, laying...it makes no difference. I am hurting pretty well even with the pain med.
One of the dialysis techs who regularly works with me is married to a renal transplant patient. In fact, it was because she had to learn to help him do home hemo that she became a dialysis tech! Anyhow, she is a fountain of information for me. This past Saturday she was telling me that post-transplant meds must be taken at exactly the same times every day, without fail. If for some reason you are sick and cannot keep your meds down, then get into the transplant team immediately so they can put you on IV meds until you feel better. It's those bits of info about my future that are incredibly valuable. Any such things I learn will always be passed on to you.
*Remember, educating yourself about everything that is coming up--no matter where you are in the process--will help you deal with decisions, absorbing incoming information, etc, so that you make the very best care decisions for you, and to help your loved ones understand what is happening with your care plan. The more you know, the easier this becomes from a mental/psychological standpoint! (Which, or course, affects your physical well-being, as well!)
My full labs were taken this past week...again...and everything is looking great! I won't go into the numbers because I save that for the top of the month labs. I just wanted to let you know that I am still as healthy as I can be.
That's all the news I can think of. Enjoy your upcoming week!
Good Health to All!
ScottW
Wednesday, June 12, 2013
12 June 2013
A few things to discuss today, so let's get going...
We'll start with numbers from dialysis:
04 Jun 13
Starting Weight: 106.2 Kg
Ending Weight: 104.2 Kg
Water Removed: 2.00 Kg
06 Jun 13
Starting Weight: 105.7 Kg
Ending Weight: 104.3 Kg
Water Removed: 1.40 Kg
08 Jun 13
Starting Weight: 105.3 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.20 Kg
11 Jun 13
Starting Weight: 105.4 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.30 Kg
Once again, my daily efforts at liquid consumption control are paying off. My weights are fairly even from treatment to treatment, and my off days are better because my body isn't being subjected to extreme fluid losses during dialysis...for me, a very good thing!
I had my monthly labs drawn last week; here are the results:
*Albumin (21 May): 4.60 g/dL (+0.10 from 16 Apr)
(How well the body absorbs proteins)
*Hemoglobin (06 Jun): 11.5 g/dL (+0.10 g/dL from 28 May)
(A Measure of Anemia)
*Ca Corrected (04 Jun): 9.40 mg/dL (-0.10 mg/dL from 07 May)
(A measure of Heart and Bone health)
*Phosphorous (04 Jun): 4.60 mg/dL (- 0.4 mg/dL from 07 May)
(High Phosphorous affects the health of your Heart and Bones)
*PTH Intact (21 May): 120 pg/mL (-79 pg/mL from 16 Apr)
(A measure of Vitamin D absorption and bone and tissue health)
*K+ (21 May): 4.9 mEq/L (+0.90 mEq/L from 16 Apr)
(Proper potassium levels keep your nerves and muscles working well)
*spKdt/V Dialysis (04 Jun): 1.51 (-0.09 from 07 May)
(A measure of the effectiveness of dialysis cleaning the blood)
= Good Numbers = Bad Numbers
In spite of all the red numbers, all of my results--aside from the Hemoglobin--are still within the range that is wanted by the dialysis center. In other words, my numbers are great! My hard work with my diet and liquids is paying off.
Anyone on dialysis can do this, too! Just because you may have additional health issues does not mean that you can't have the best possible lab results. Just stick to the diet your nutritionist recommends, drink the reduced fluids your dialysis personnel recommends, and take your meds in the prescribed doses at the prescribed times every day, without fail. Good labs are entirely within your ability to control; so do what you have to!
It really IS that easy!
I've been doing a lot of asking about how to relieve the constant itching around the button-hole canulations sites, and no one really has much of an answer. So, I'll just try to scratch less, and hopefully reduce the skin irritation. I'll keep asking, however.
The last couple of weeks I have been seeming to get tired faster than ever. My housework, though getting done, takes me longer, and I am usually putting things off for a couple of days just because I don't have the energy. Sometimes I can still push through; other times not. No giving up, though! Never!
The headache, not in its 43rd consecutive month, has been up and down in intensity--but mostly up. I have had a few times that had indications that TMD S/S's were involved, so I used my NTI devices and the headache was reduced the next morning; but other than that, it's all about this CKD-related headache. No fun there.
Sleep...When I do get a full night of sleep, I've been having bad dreams again, making my sleep restless at best. Of course, the dreams all revolve around losing control, having no choice, etc. So, once I realize this, I go to sleep the next few nights repeating the conscious phrase, "I control my dreams; they do NOT control me!" This always works, for me! Then, I usually go several weeks before the bad dreams stop cropping up again.
That's all for now. Have an outstanding week, everyone!
Good Health to All!
ScottW
We'll start with numbers from dialysis:
04 Jun 13
Starting Weight: 106.2 Kg
Ending Weight: 104.2 Kg
Water Removed: 2.00 Kg
06 Jun 13
Starting Weight: 105.7 Kg
Ending Weight: 104.3 Kg
Water Removed: 1.40 Kg
08 Jun 13
Starting Weight: 105.3 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.20 Kg
11 Jun 13
Starting Weight: 105.4 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.30 Kg
Once again, my daily efforts at liquid consumption control are paying off. My weights are fairly even from treatment to treatment, and my off days are better because my body isn't being subjected to extreme fluid losses during dialysis...for me, a very good thing!
I had my monthly labs drawn last week; here are the results:
*Albumin (21 May): 4.60 g/dL (+0.10 from 16 Apr)
(How well the body absorbs proteins)
*Hemoglobin (06 Jun): 11.5 g/dL (+0.10 g/dL from 28 May)
(A Measure of Anemia)
*Ca Corrected (04 Jun): 9.40 mg/dL (-0.10 mg/dL from 07 May)
(A measure of Heart and Bone health)
*Phosphorous (04 Jun): 4.60 mg/dL (- 0.4 mg/dL from 07 May)
(High Phosphorous affects the health of your Heart and Bones)
*PTH Intact (21 May): 120 pg/mL (-79 pg/mL from 16 Apr)
(A measure of Vitamin D absorption and bone and tissue health)
*K+ (21 May): 4.9 mEq/L (+0.90 mEq/L from 16 Apr)
(Proper potassium levels keep your nerves and muscles working well)
*spKdt/V Dialysis (04 Jun): 1.51 (-0.09 from 07 May)
(A measure of the effectiveness of dialysis cleaning the blood)
= Good Numbers = Bad Numbers
In spite of all the red numbers, all of my results--aside from the Hemoglobin--are still within the range that is wanted by the dialysis center. In other words, my numbers are great! My hard work with my diet and liquids is paying off.
Anyone on dialysis can do this, too! Just because you may have additional health issues does not mean that you can't have the best possible lab results. Just stick to the diet your nutritionist recommends, drink the reduced fluids your dialysis personnel recommends, and take your meds in the prescribed doses at the prescribed times every day, without fail. Good labs are entirely within your ability to control; so do what you have to!
It really IS that easy!
I've been doing a lot of asking about how to relieve the constant itching around the button-hole canulations sites, and no one really has much of an answer. So, I'll just try to scratch less, and hopefully reduce the skin irritation. I'll keep asking, however.
The last couple of weeks I have been seeming to get tired faster than ever. My housework, though getting done, takes me longer, and I am usually putting things off for a couple of days just because I don't have the energy. Sometimes I can still push through; other times not. No giving up, though! Never!
The headache, not in its 43rd consecutive month, has been up and down in intensity--but mostly up. I have had a few times that had indications that TMD S/S's were involved, so I used my NTI devices and the headache was reduced the next morning; but other than that, it's all about this CKD-related headache. No fun there.
Sleep...When I do get a full night of sleep, I've been having bad dreams again, making my sleep restless at best. Of course, the dreams all revolve around losing control, having no choice, etc. So, once I realize this, I go to sleep the next few nights repeating the conscious phrase, "I control my dreams; they do NOT control me!" This always works, for me! Then, I usually go several weeks before the bad dreams stop cropping up again.
That's all for now. Have an outstanding week, everyone!
Good Health to All!
ScottW
Friday, June 7, 2013
07 June 2013
I had my latest follow-up doctor visit with my Nephrologist yesterday, and I am pleased to report that my lab numbers indicate that I am "the healthiest dialysis patient [they] have at the clinic." In perspective, this is great news. It means that I am nowhere close to feeling like I could be should I have other health issues occurring right now, as well.
So, I'll take that good news!
Not much else to report about the office visit.
My lungs are clear of fluids--Excellent!--
my heart is clear of fluids or arrhythmia's--Outstanding!--
and all in all, I am fairly healthy for someone in End Stage Renal Failure.
Fabulous news!!!
While I was at the doctor's office yesterday, I saw an advert for further patient education about chronic kidney disease. It is an online site called, KidneySchool.org. The info is presented by Fresenius Medical Care, and is offered free of charge. I copied the two-sided brochure for you:
.jpg)
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I've taken a good look at the site and it has some great info. This is especially true for patients who are new to this whole chronic kidney disease routine. So go take a look, do the activities and learn about what you may be going through.
**This info will also be helpful to caregivers, family members, etc.
That's all I have for today. Enjoy your weekend, everyone!
Good Health to All!
ScottW
So, I'll take that good news!
Not much else to report about the office visit.
My lungs are clear of fluids--Excellent!--
my heart is clear of fluids or arrhythmia's--Outstanding!--
and all in all, I am fairly healthy for someone in End Stage Renal Failure.
Fabulous news!!!
While I was at the doctor's office yesterday, I saw an advert for further patient education about chronic kidney disease. It is an online site called, KidneySchool.org. The info is presented by Fresenius Medical Care, and is offered free of charge. I copied the two-sided brochure for you:
.jpg)
.jpg)
I've taken a good look at the site and it has some great info. This is especially true for patients who are new to this whole chronic kidney disease routine. So go take a look, do the activities and learn about what you may be going through.
**This info will also be helpful to caregivers, family members, etc.
That's all I have for today. Enjoy your weekend, everyone!
Good Health to All!
ScottW
Sunday, June 2, 2013
02 June 2013
About fourteen days since I last wrote an entry, so let's get going.
As usual, I'll begin with the dialysis weights:
21 May 13
Starting Weight: 107.0 Kg
Ending Weight: 104.1 Kg
Water Removed: 2.90 Kg
23 May 13
Starting Weight: 105.9 Kg
Ending Weight: 104.3 Kg
Water Removed: 1.60 Kg
25 May 13
Starting Weight: 106.0 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.90 kg
28 May 13
Starting Weight: 106.0 Kg
Ending Weight: 104.3 Kg
Water Removed: 1.70 Kg
30 May 13
Starting Weight: 105.1 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.00 Kg
01 Jun 13
Starting Weight: 106.2 Kg
Ending Weight: 104.3 Kg
Water Removed: 1.90 Kg
Once again, consistency rules the day. I continue to work every day to limit my fluid intake, and those efforts are showing themselves with each dialysis treatment. *Right now, I am trying to limit myself to no more than about 45 Fl. Oz's per day, or so. Most days I do pretty well; other days, not so much. But even on the not so good days, I am extremely conscientious about not going overboard with the fluids. (Hey...you have to cheat once in a while just so you don't go crazy thirsty!)
In my last entry I noted that I haven't been feeling well...and that same trend has continued. My body is just struggling with being sick. Most days I have been dragging myself around with barely enough energy to be even slightly productive. Pushing through these times is hard! But, I know that if I don't, it will end up being detrimental to my overall health and well-being, let alone my state of mind. So, I push through it; even when doing so is the very last thing I have any inclination of doing.
My sleep has again been all over. My naps are fewer...again; but my nightly sleep hours are longer. On non-Dialysis nights I am getting between 9-11 hours, with no naps. On the nights before dialysis I am sleep four hours, then getting between 4-7 hours of sleep after the Tx. So, on the average dialysis day--between 12a and waking the following day--I am getting between 14-17 hours of sleep over about a 30 hour period. Even then I am still dragging around exhausted and not feeling well.
The headache is maintaining its elevated level. I'd estimate that it is a constant 8.5 on a 1-10 scale. And with the bilateral flank pain still going strong (and still lower on the kidneys), my T3 usage has increased to about four per day, on average. I know that I could always take more--according to the Rx--but I just don't want to! I'm blah enough as it is without adding anymore to it. So, I tolerate a lot of pain.
The incidences of nausea have decreased. In the past week I have only taken a few small doses of Promethazine (anti emetic). I will not complain about having less nausea!
One thing I never anticipated about dialysis is the constant state of healing the button-hole sites are in. As a result, the area around both sites is always itching, as healing tissue does. Up to this point I haven't tried to find anything that might reduce the itching other than scratching along both sides of the fistula. But, the scratching is beginning to irritate my skin, so, I'll probably be looking for some sort of salve or cream to help with this. I'll let you know what I come up with.
And...
Well, never mind. I suddenly forgot whatever else it was I had in mind.
C'est La Vie.
Good Health to All!
ScottW
As usual, I'll begin with the dialysis weights:
21 May 13
Starting Weight: 107.0 Kg
Ending Weight: 104.1 Kg
Water Removed: 2.90 Kg
23 May 13
Starting Weight: 105.9 Kg
Ending Weight: 104.3 Kg
Water Removed: 1.60 Kg
25 May 13
Starting Weight: 106.0 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.90 kg
28 May 13
Starting Weight: 106.0 Kg
Ending Weight: 104.3 Kg
Water Removed: 1.70 Kg
30 May 13
Starting Weight: 105.1 Kg
Ending Weight: 104.1 Kg
Water Removed: 1.00 Kg
01 Jun 13
Starting Weight: 106.2 Kg
Ending Weight: 104.3 Kg
Water Removed: 1.90 Kg
Once again, consistency rules the day. I continue to work every day to limit my fluid intake, and those efforts are showing themselves with each dialysis treatment. *Right now, I am trying to limit myself to no more than about 45 Fl. Oz's per day, or so. Most days I do pretty well; other days, not so much. But even on the not so good days, I am extremely conscientious about not going overboard with the fluids. (Hey...you have to cheat once in a while just so you don't go crazy thirsty!)
In my last entry I noted that I haven't been feeling well...and that same trend has continued. My body is just struggling with being sick. Most days I have been dragging myself around with barely enough energy to be even slightly productive. Pushing through these times is hard! But, I know that if I don't, it will end up being detrimental to my overall health and well-being, let alone my state of mind. So, I push through it; even when doing so is the very last thing I have any inclination of doing.
My sleep has again been all over. My naps are fewer...again; but my nightly sleep hours are longer. On non-Dialysis nights I am getting between 9-11 hours, with no naps. On the nights before dialysis I am sleep four hours, then getting between 4-7 hours of sleep after the Tx. So, on the average dialysis day--between 12a and waking the following day--I am getting between 14-17 hours of sleep over about a 30 hour period. Even then I am still dragging around exhausted and not feeling well.
The headache is maintaining its elevated level. I'd estimate that it is a constant 8.5 on a 1-10 scale. And with the bilateral flank pain still going strong (and still lower on the kidneys), my T3 usage has increased to about four per day, on average. I know that I could always take more--according to the Rx--but I just don't want to! I'm blah enough as it is without adding anymore to it. So, I tolerate a lot of pain.
The incidences of nausea have decreased. In the past week I have only taken a few small doses of Promethazine (anti emetic). I will not complain about having less nausea!
One thing I never anticipated about dialysis is the constant state of healing the button-hole sites are in. As a result, the area around both sites is always itching, as healing tissue does. Up to this point I haven't tried to find anything that might reduce the itching other than scratching along both sides of the fistula. But, the scratching is beginning to irritate my skin, so, I'll probably be looking for some sort of salve or cream to help with this. I'll let you know what I come up with.
And...
Well, never mind. I suddenly forgot whatever else it was I had in mind.
C'est La Vie.
Good Health to All!
ScottW
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