Posted , 4 users are following.
Hi lovelies,
I posted a while back with regards to my husband being stage 4.
37 years old it's absence of kidney, hypertension and pre/diabetes.
He just spent time in hospital to bring potassium down. Also nerve damage to his legs.
Now finished work as physically can't do it spends most the day sleeping .
We visit the dialysis clinic on the 18th
Struggling to get my head around future events
0 likes, 10 replies
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helen54849 marie46146
Posted
Hi,
I was 37 when I went to stage four, so I completely understand your fear of the unknown at the moment. Even though you know dialysis is coming (I knew all my life) when the words are said to you that it will be soon it is still a shock, as this is the next bit of the journey. High potassium goes hand in hand with CKD mine was 7 for a long time and I managed to keep it around 6 through diet. Your husband should she a dietician who will advise what to do. Has your husband decided which dialysis he is going to do yet? There is Haemo which I didn't fancy after researching and visiting the unit and peritoneal (PD) which is the type I did. I chose this as it was less restrictive and I could do it myself at home (I can't bare being faffed with) I could still go to work and spend time with my children as it is done at night so was sleeping anyway. For this I had something called a tenckhoff catheter fitted in a day operation, its a pipe that sticks out of your stomach, its sounds rank but you get used to it and its a good party trick. After it has heeled (about two weeks) you have your training then off you go. I didn't have any food or fluid restrictions and only took 1 bp med and all my bloods went back to normal apart from my GFR and creatinine (which is ok and expected to be wrong) My son loved the machine but my daughter who is older and understood more wouldn't even look at it. I went on the transplant list but had a live doner (you still have to go on the list) I was on dialysis just under two years (it takes about four weeks of dialysis to start feeling better, you are not fixed but you do feel better) I had my transplant 15/9/16 and even though there has been ups and downs (I will let you deal with the whole dialysis thing first) I feel ace. So I just wanted you to know that I know its crap now and you are in for a roller coaster ride but there is light at the end of the tunnel. It will be hard for you to watch too. Please try not to get frustrated with him if he can't eat, he isn't doing it to be difficult he really can't stomach it trust me. I haven't gone into all the detail about PD dialysis as its a lot for you to take in at the moment, if you have any questions I can provide my experience. You will both get through this
marie46146
Posted
Hi Helen
Thank you for replying.
My husband has been told the only option is the surgery for stomach , I'm note sure if that means home dialysis .
We see his dietian next week also have to visit the dialysis clinic.
His so tired with all kinds of infections and nerve damage.
It's heart breaking.
We have changed a lot to his diet and his been changed blood pressure meds but nothing seems to work sadly.
His isolated to the house as unable to walk far so I'm now looking into wheelchair use.
Will keep posting .
Marie
john75639 marie46146
Posted
When I was on stage 4 CKD, walking was difficult because of claudication in the back of my calves. It is a muscle spasms that occurs when walking to to three steps. They were painful spasms. Since I could not afford a wheelchair, I used a walker. Before the spasms, I could walked to the bus sration within 15 minutes. When the spasms ocurged, it took me 30 to 40 minutes to walk the same distance. I cannot tell you the many medical problems that happened to me in 2012 to 2014. My blood pressure was up and then down. My creatinine was up and down. My first fistula didnt work.
So when my creatinine hit 6.9, I was informed by my doctor to immediately go to the hospital. I was told I needed to get a drug by IV. When I got there, I was told I was going to be operated on for a catheter. It was put on my right side near my neck so that a dialysis machine could be connected to it because my cretainine was so high.
After the hospital stay, I was sent to a haemodialysis center because I thought it was a better choice than PD because you have to have extra space to keep all of the supplies for the home dialysis. I am living with relatives, so there is no extra space in the house. The space can be an exra bathroom tub or an empty closet. There is nothing like that where I live. Luckily I went to a haemodialysis center. Every three days , a nurse checks my blood pressure and checks my lungs and every two weeks my blood is tested for various health problems during one day, I got up feeling dizzy and disoriented but I went to the haemodialysis center anyway. I told them about my symptoms and put a blood pressure cuff on my arm and they immediately stated they called an ambulance, and they said I was going to the hospital. The nurse told me my pulse was 160.that is why I was going to the hospital. When I got to the hospital my pulse was 166. I told the hospital doctors my only symptoms, and they told me having a pulse rate like that could cause a heart attack or a stroke. But that may not happen to your husband. I have a genetic kidney disease, something I was born with, and I have numerous circulation problems which may cause many. more problems
Since I go to a haemodialysis center, I go to the center three times a week and the machine cleans my blood for 4 hours. You can't move your arm, otherwise the alarm sounds. After I go home, I sleep. Most people react the same way.
Hopefully you and. your husband pick the right way to get his blood cleaned through PD or at a haemodialysis center.
The staff at my haemodialysis center (in the US) are very kind, so I don't mind going there. Due to my circulation problems. I cannot get a kidney transplant. So good luck in your future choices.
helen54849 marie46146
Posted
Hi,
Its sounds like PD, heamo is usually in the arm or chest depending on where you live and then in the neck for emergency dialysis. PD is a more gentle form of dialysis. I know its seems hard at the moment, but things will get easier he is at the point I called limbo feeling really rubbish but not quite ready for dialysis just yet. PD is done at home yes, you are fully trainined and you should be able to attend too. I had printed sheets to follow also, when you get into it, it is just like driving a car you do it automatically.
Once he starts this like I said givee it 3 - 4 weeks and he will notice the difference.
There are loads of BP meds on the market, I couldn't find any that suited. Candisartan worked but made my potassium go up (a common side effect, should be monitored closley) I found a combination of moxonodie 200mg twice a day with 10mg Amlodopin also twice a day. We are all different but if he hasn't already tried this combination it is worth an enquiry at the hospital at least.
Regarding wheelchairs your renal unit or hospital should be able to loan you one or put you in touch with an organisation who can do so.
Things will improve soon
marie46146
Posted
Thank you for replies, I am very greatful.
I'm hopeful dialysis will be at home but not sure as we have small children and wouldn't want items to be touched.
He also suffered spasms in legs last year but was told it is sciatica.
He is currently taking candisartin which has caused numberess throats infections even a mass that had to be removed in December.
Mood swings are horrendous.
helen54849 marie46146
Posted
Hi,
Like I have explaine candisartan causes high potassium he needs to get off this and onto something else immediately I can't stress this enough. I am quite surprised that the hospital didn't get the link, he should of had bloods done weekly on this med. I only took mine for a week until the first blood test as soon as my potassium rose it was stopped.
When I started dislysis my son was 3, I involved him in the process, explained what everything was but told him not to touch. He sat on the bed with us every night as we set up the machine in advance for that night, I even let him have the hand gel on so he felt part of it. Each time I explained that if he touched the stuff he could make me very poorly. So he just sat and watched and asked questions (as they do). You will be surprised how much they understand even the little ones. Once you know for sure what type your husband is having go online and start finding pictures of the machine and other items, sit everyone down and explain it using the pictures. Of course it is completely up to you as they are your children so only you know what is best for them and I am only explained what worked for us but it is a scary time for children watching this if they don't know what is going on and explaining and being involved helps them feel more secure. Now my daughter on the other hand was 16, she knew what was going on and was upset with me becuase I wouldn't let her give me a kidney and boy had she carried out her research she advised me she had looked and in an emergency could donate I still said no. She wouldn't even entertain coming in my bedroom let alone look at the machine and I didn't force the issue, she was at a difficult age so I explained to her that she didn't have to keep it all in, she could talk to me about it and she wouldn't upset me, but I didn't want her to keep it all in (she self harmed when my nan died who she was very close to cos she thought incorrectly she would upset me I wasn't going back there) slowy she would as the odd question now and again but they get scared too no matter what age. How old are your children if you don't mind me asking?. Do you live in the UK to there is a reason why I am asking this as I can give you advice on things you are entitlied to if you do home dialysis. If you like we can discuss this by the message system on here.
marie46146
Posted
Hi Helen
Think you for your advice it's been very helpful.
My husband is currently having weekly blood test and I will stress to the nurse on Monday about the candisartin as they have upped the dosage.
My children are between 7 and 15. They understand that their father is really ill but don't get why he can't eat this and that.
I don't think my husband realises the dangers of his diet as I seem like the evil wife restricting things.
A lot of pressure is being put on our relationship and I well, feel so alone. I'm their every step of the way for him but gain nothing back.
Yes I'm in the uk and we are in the process of applying for pip.
Would be lovely to talk
Marie
marie46146
Posted
They have no upped his candisartin again
His blood pressure dangerously high
And to find out his not been having potassium checks
helen54849 marie46146
Posted
Hi Marie,
I have messaged you. I can't believe he has not been having his potassium checked especially as he has had issues with this. If his BP is high then I would ask the following questions
Why is he on a drug that is clearly not working
Why is he only on one drug as a combination can be used
As it is not working why hasn't it been changed to something else to see if that helps.
I am so sorry you are going through this, this is very wrong. Please don't ever be afraid to question the doctors they don't always like it but it is your right. I do it all of the time and any meds I am given I read up on so I can ask questions. I feel lucky as I am able to discuss, question and have a say where possible in my care. Please phone and speak to the secretary with your fears, or questions they have to discuss it with your husband at the very least xx
marie46146
Posted
Hi Helen
I'm so angry with my husbands doctors
After 2 telephone calls renal unit told us to attend a n e for emergency bloods with confirmed my fear of high potassium , it's now 5.4 with is high but not high enough for treatment .
They have given us some paper work and told us we need a consultation with regards to everything. They has said that the surgery should be doing potassium levels weekly .
Marie