In 1997 hubby started PD. It was a Godsend to us that he could do it because there were 2 hemo units in Newfoundland at that time. One in St. John’s and one in Corner Brook. St. John’s is about a six hour drive from us and Corner Brook about three. Neither of the places were an option for us unless we moved. That would have meant me quitting my job and trying (probably without much success) to get a teaching job in one of these cities. I could not get a transfer there because they are different school districts than the one I am in. For 2.5 years things went O.K. I say ok because he never felt really well on him. When he started the kidney spelialist told him he should feel like a new man. A year later hubby was saying when is this going to happen. Every time he had tests done his prescription would change. He would have to change the size of the bag or the number of exchanges. In March of 2000 they suggested he get a fistula put in (there was a dialysis unit open about an hours drive from us) and that he use the cycler for PD. Well, he hated the cycler. I think it was because he had gotten so sick. The peritoneal cavity had stopped filtering . He would not even drain out all he had put in. He was sick for about 2 months. He told the doctors and his PD nurse. His blood pressure was 230/130. PD nurse said this was fine for a dialysis patients. He had major headaches, felt miserable and started hallucinating. He saw things that weren’t there - ants coming out of plug ins, large birds -like pteradactyls in the ssky. He also complained that he couldn’t see. He complained about that and asked to be sent to an opthamologist to see what was going on. Nobody would listen. He finally said enough is enough and we got in the car -with me driving- and went to the dialysis unit in St. Johns. When he would lie down and breath it sounded like someone had just opened a bottle of pop. Anyway when we got to the unit would you believe that the first kidney specialist he saw told him it was all in his head and all he needed was some antidepressants. Well I don’t want to repeat what he said to her but it wasn’t very nice. She sent him for a chest xray and told him there was no fluid. Next day he went to the clinic for dialysis and there was another kidney specialist there. Walt explained the problem to him and told him ther e was something wrong with his eyes. He asked him what was wrong and Walt told him he couldn’t see. He made arrangements for him to see an opthamologist the next day. The opthamologist took one look in his eyes and picked up the phone and called the kidney specialist he told him Walt had so much fluid on that the arterty on the back of his eye had swollen and was about to burst. If he didn’t get the fluid off and quick it would burst and he would be permantly blind. We asked if there was anything we could do and he said cross your fingers and pray. He was dialized every day for 3 hours for 3 weeks. He had 25 lbs of fluid on. A lot for the other doc telling him he had none. Well thankfully his eyesight came back. He still has a little bit of black in one of his eyes but he only sees it when he closes the other eye. Apparently he came pretty close to dying because he was so uremic and his blood pressure was so high that he had a good chance of having a stroke. Since starting hemo he has not had any problems. He does have to see the opthamologist once a year.
I know PD works for a lot of people . I just wanted to post this so that you would know what can happen if it stops working. DOn’t let docs tell you that blood pressures like he had are ok. Everybody needs to be in control of their treatments and understand what is happening to them. If Walt hadn’t taken control at the time he would not be around here now.
Hi Delphine,
Wow, you and your husband have really been through the mill! I can’t believe that anyone would ever say that a blood pressure of 230/130 was normal no matter what kind of health problem was present. That’s just plain wrong.
It’s good that you took things into your own hands and insisted on a second opinion after the first nephrologist said there was “no extra fluid.” There’s very little question that you saved his life.
PD is a great treatment, but it is not a good fit for everyone. Your husband’s not feeling well for so long should have been a clue to his care team (who knew more about it than you both did at the time) that something was wrong. I’m glad he survived the mistakes that were made with his care!
[QUOTE=delphine;12116]In 1997 hubby started PD. It was a Godsend to us that he could do it because there were 2 hemo units in Newfoundland at that time. One in St. John’s and one in Corner Brook. St. John’s is about a six hour drive from us and Corner Brook about three. Neither of the places were an option for us unless we moved. That would have meant me quitting my job and trying (probably without much success) to get a teaching job in one of these cities. I could not get a transfer there because they are different school districts than the one I am in. For 2.5 years things went O.K. I say ok because he never felt really well on him. When he started the kidney spelialist told him he should feel like a new man. A year later hubby was saying when is this going to happen. Every time he had tests done his prescription would change. He would have to change the size of the bag or the number of exchanges. In March of 2000 they suggested he get a fistula put in (there was a dialysis unit open about an hours drive from us) and that he use the cycler for PD. Well, he hated the cycler. I think it was because he had gotten so sick. The peritoneal cavity had stopped filtering . He would not even drain out all he had put in. He was sick for about 2 months. He told the doctors and his PD nurse. His blood pressure was 230/130. PD nurse said this was fine for a dialysis patients. He had major headaches, felt miserable and started hallucinating. He saw things that weren’t there - ants coming out of plug ins, large birds -like pteradactyls in the ssky. He also complained that he couldn’t see. He complained about that and asked to be sent to an opthamologist to see what was going on. Nobody would listen. He finally said enough is enough and we got in the car -with me driving- and went to the dialysis unit in St. Johns. When he would lie down and breath it sounded like someone had just opened a bottle of pop. Anyway when we got to the unit would you believe that the first kidney specialist he saw told him it was all in his head and all he needed was some antidepressants. Well I don’t want to repeat what he said to her but it wasn’t very nice. She sent him for a chest xray and told him there was no fluid. Next day he went to the clinic for dialysis and there was another kidney specialist there. Walt explained the problem to him and told him ther e was something wrong with his eyes. He asked him what was wrong and Walt told him he couldn’t see. He made arrangements for him to see an opthamologist the next day. The opthamologist took one look in his eyes and picked up the phone and called the kidney specialist he told him Walt had so much fluid on that the arterty on the back of his eye had swollen and was about to burst. If he didn’t get the fluid off and quick it would burst and he would be permantly blind. We asked if there was anything we could do and he said cross your fingers and pray. He was dialized every day for 3 hours for 3 weeks. He had 25 lbs of fluid on. A lot for the other doc telling him he had none. Well thankfully his eyesight came back. He still has a little bit of black in one of his eyes but he only sees it when he closes the other eye. Apparently he came pretty close to dying because he was so uremic and his blood pressure was so high that he had a good chance of having a stroke. Since starting hemo he has not had any problems. He does have to see the opthamologist once a year.
I know PD works for a lot of people . I just wanted to post this so that you would know what can happen if it stops working. DOn’t let docs tell you that blood pressures like he had are ok. Everybody needs to be in control of their treatments and understand what is happening to them. If Walt hadn’t taken control at the time he would not be around here now.[/QUOTE]Delphine… I thank you… ‘you know’…Hell of a story…know one should have to go throught all of that… something was very very wrong in the cookie jar… Yes you do need to take control … need to know how to read and understand blood work… take and understand bp … basically need to know as much or more than the provider . Feel sorry for what you and hubby went through but glad you posted what can go really wrong ! I’m sure your both doing much better… that’s a understatment Richard & Jessie
Dori I didn’t save his life he did . He is very outspoken (more so since PD) and he was the one who kicked up "hell about what was happening. Like I said I will not repeat what he said to the doctor but there were a few explicit words that needed to be censored.
After started hemo he would always tell them when his weight needed to be put up or lowered. He was only a few on the unit that they would do this with. Some wanted therir weight put up when they had fluid on. Since then he really watches his blood pressure and the amount of fluid he has on.
Oh yeah at the time when his blood pressure was 230/130 his gp had him on 3 and a half blood pressure pills a day. One of these was a slow release and the doctor told him to cut it in half… You are not supposed to do this. The first night he took it what a headache he had. Up all night walking the floor.
Most or all of the long-term folks on dialysis that I know have saved their own lives at one point or another by how much they knew–and were willing to stand up for themselves and insist that they didn’t feel right and something needed to be done about it, NOW!.
What’s unfortunate is that it was necessary. But nobody’s perfect, including medical professionals.
Trust your instincts, folks, they’ll rarely lead you astray.
[QUOTE=Dori Schatell;12120]Most or all of the long-term folks on dialysis that I know have saved their own lives at one point or another by how much they knew–and were willing to stand up for themselves and insist that they didn’t feel right and something needed to be done about it, NOW!.
What’s unfortunate is that it was necessary. But nobody’s perfect, including medical professionals.
Trust your instincts, folks, they’ll rarely lead you astray.[/QUOTE] Your right Dori the providers are not always right they are falible … In the case of my boy Jessie I see a real problem getting his blood work and bp’s corrected. Of course Jess is not a long term user of dialysis but nonetheless I’ll not stand by and watch him get into a situation that would even remotely cause him to feel poorly. Putting the horse in the front so to speak ! Richard & Jessie