I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
September 25, 2017, 05:16:38 PM

Login with username, password and session length
Search:     Advanced search
515043 Posts in 32159 Topics by 11648 Members
Latest Member: iganepro
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Introduction
| |-+  The IHD Family - Our Members (Moderators: Rerun, kitkatz)
| | |-+  My pre-dialysis-days have finally come to an end...
0 Members and 1 Guest are viewing this topic. « previous next »
Pages: 1 ... 3 4 [5] Go Down Print
Author Topic: My pre-dialysis-days have finally come to an end...  (Read 10884 times)
kristina
Premium Member
Elite Member
*
Offline Offline

Posts: 4346


« Reply #100 on: July 31, 2016, 06:47:46 AM »

Thank you iolaire, your kind thoughts are very much appreciated and I shall try my very best to stay as well as possible for as long as possible with regular exercising walks around the block etc. ...
... I also try to compose myself in order to try and continue with my poetry (translations etc.) and I also try to continue with my paintings and hopefully things have a chance to go along a little better ...
... Of course, it becomes ever so difficult at times and it certainly takes much more strenghts to try and continue, when the process of dialysis takes away so much strenghts, energy and durability ... but I live in hope and hopefully I shall be lucky and get a transplant and then hopefully all the needed strenghts, energy and durability may come back for me to continue with my work and art ...
Many thanks again from Kristina. :grouphug;
Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
kristina
Premium Member
Elite Member
*
Offline Offline

Posts: 4346


« Reply #101 on: July 09, 2017, 09:37:43 AM »

I thought I would post a little up-date about my life on dialysis (just over two and half years now) with emphasis on how I manage.
Just to recap, I am on haemo-dialysis at a dialysis centre; I have a ‘Tesio Line’ chest access, 3 weekly sessions, 4 hours each session.
Fortunately I have had no problems with the ‘Tesio Line’ and hopefully it continues like that. The access site is cleaned with an antiseptic solution each week and covered securely with a sterile drape. I protect this area with my life. When I shower I always have the shower-head at leg height and use a flannel to clean my upper body very carefully thereby avoiding any water contaminating the sterile drape. I am extremely careful not to pull or jerk the line so as to avoid the line dislodging. For me there are absolutely no compromises here. This is my ‘LIFE LINE’.
At my dialysis centre there are two types of dialysate solution (A6 & A28). I commonly use A28 because it is a potassium-low solution which I need because as a vegetarian my potassium intake with regard to food & liquid may be higher than normal. My monthly blood test would show the potassium level and reveal whether any adjustment needs to take place.
I do not drink liquid at dialysis sessions. I only have an egg sandwich plus a ‘small’ mixed salad composing of new potatoes, olives, gherkins, tomatoes, all mixed with a little cider-vinegar and olive oil; this is my early evening meal and last of the day on dialysis-days  -  yum! Yum!
I can adjust my potassium level by monitoring and adjusting my food intake. All in all my potassium-level blood results are nearly always within the nominated parameters.
My sodium level is always within the nominated parameters, because, firstly, I never use any salt, and secondly, I keep away from any food which may contain raised amounts of salt; granted, one cannot entirely avoid salt but by adopting such a strict limitation I can still keep the level in the normal range. Salty food makes one want to drink and this is seriously not good for me as a dialysis patient.
Since the day I first began dialysis I have kept a ‘dialysis diary’ for every session: recording weight & blood pressure before & after, fluid taken off, dialysate type, and any other experience related to my dialysis-treatment which is relevant. I also record my weight every morning before a shower. One soon easily gets into this simple routine and I must say it has been, and still is, very useful for numerous reasons.
There are two "things" I cannot control: iron levels and the red blood cell count. To assist in their control I need occasional iron infusions, and ‘Epo’ to stimulate the bone marrow to produce oxygen-carrying red blood cells, as and when the specialist deems it necessary.
Dialysis-sessions can be difficult to endure. By dividing the time into several interests, the time goes much quicker. For me, I like to read a magazine or an interesting book or do my crosswords in the first two hours and then I have a little computer-device on which I watch some of my favourite films or explore new programs and also I like to listen to classical music concerts.  All this keeps me very busy and enjoying myself as best as is possible during the four hours.
When I get home I always do some gentle exercises like cycling with my legs and just a few other types of movements which get me out of the “cramped” feeling which one gets on dialysis.
Surviving and having some sort of life whilst on dialysis is a tricky business.
I have noticed over those two and a half years of dialysis, that it helps me greatly and makes my life much more easy and stable when I follow this type of strict dialysis-life-style because it provides me with much more energy and makes me feel much more positive about my life. So, the more I adhere to this strict regime of my vegetarian diet and strict liquid-limitations, the better my body reacts and the easier I can try to do things I like. It is very tough, but worth doing.
I know dialysis is my life-support, and without it I would have died two and a half years ago. For me the fantastic invention of dialysis has allowed me to continue with developing my interests and reaching goals which two and a half years ago would have been impossible, had it not been for my dialysis-treatments. I look at it this way, in a positive way, and work my life-style out to achieve positive results.
I am now looking forward to the next chapter in my life, which will be the good fortune to have a kidney transplant.
But whilst I am on dialysis, however long it will be, I am determined to give it my best effort.
Kristina. :grouphug;
Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
cassandra
Global Moderator/Premium Member
Elite Member
*
Offline Offline

Gender: Female
Posts: 4041


When all else fails run in circles, shout loudly

« Reply #102 on: July 09, 2017, 12:04:14 PM »

That was a good read Kristina, thanx for sharing, and keep it up my darling

   :2thumbsup;


Lots of love, luck and strength, Cas
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
kitkatz
Administrator/Owner
Member for Life
*****
Offline Offline

Gender: Female
Posts: 16742


« Reply #103 on: July 09, 2017, 03:50:00 PM »

Good for you.  It is always good when you find a way to make dialysis work for your life.
I look at dialysis as that part time job I go to three days a week.  I have to show up for my own good.
Payment is a cleaner system and feeling better during the week.
I have also developed systems for dealing with my whacky tummy during dialysis.
On dialysis days I always eat the same things before dialysis.  It helps to keep a wobbly tummy happy during a six hour run.
I also take an Ambien before I go into dialysis.  This has helped with anxiety I have had the last three years after my serious run in with infection and intestinal surgeries.
Funny how after fifteen years on dialysis I developed anxiety about it.

I have found my own routines help me to survive  a six hour session in the chair.
Read my tablet for a while or a book.  Sleep for two or three hours.
Have a snack or cheese stick and rye cracker and sliced apples.
I have a mini picnic going on.
Then TV watching or Netflix or reading something.
When I get that anxious feeling going I divert my attention to my tablet try to find silly things to look at.
Logged



Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
kristina
Premium Member
Elite Member
*
Offline Offline

Posts: 4346


« Reply #104 on: July 10, 2017, 09:54:59 AM »

Many thanks Cassandra and kitkatz for your kind thoughts.
Yes, you are right, it is good to find a way to make dialysis work for us and it is a lovely idea to look at it like a part-time-job three times every week!
I very much like this idea, especially since “payment” for this part-time-job is a cleaner body-system, which assists us to feel better!
Many thanks again for your encouraging kind thoughts from Kristina. :grouphug;
Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
Premium Member
Member for Life
*
Offline Offline

Gender: Female
Posts: 9814


« Reply #105 on: July 10, 2017, 11:14:32 AM »

Kristina, you are blessed with intellectual curiosity.  At the very least, the time you spend on dialysis gives you plenty of opportunity to read and learn, so well done you!

(You are also blessed with rigorous self-control!)
Logged

"Empathy is the soul of democracy."  Jeremy Rifkin
Xplantdad
Full Member
***
Offline Offline

Gender: Male
Posts: 199


Health is not valued till sickness comes. T.Fuller

« Reply #106 on: July 10, 2017, 01:01:09 PM »

Very neat read Kristina, Like you my daughter had a chest cath before her transplant. She wouldn't let anyone near it except me :)

When the surgical team pulled it out after transplant, the doc praised "whoever" took such good care of the access and the site around it. We just winked and smiled at each other!

 :thumbup;
Logged

My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
kristina
Premium Member
Elite Member
*
Offline Offline

Posts: 4346


« Reply #107 on: July 11, 2017, 02:11:48 AM »

Many thanks MooseMom and Xplantdad for your kind thoughts, it is very much appreciated..
... Hopefully "my" kidney transplant happens in the not too distant future and my mobile telephone is switched-on 24/7 and I also keep my fingers crossed for the best possible outcome...
Thanks again Xplantdad for sharing your experiences about the tesio-line (chest cath), it is quite re-assuring, because I was thinking for a long time which "access" to choose and because of my piano-playing, a chest-cath seemed to be the most suitable option for me. Of course, I have to take great care, because a chest-cath can become much more dangerous, if it is not taken great care of, but I do take the greatest care possible and thankfully it has given me no problems and hopefully it continues like that in the future.
Many thanks again from Kristina. :grouphug;
Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Pages: 1 ... 3 4 [5] Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.14 | SMF © 2017, Simple Machines | Mobile View Valid XHTML 1.0! Valid CSS!