It's not just for retirees anymore. Cruises cater to just about anyone. Even those who require dialysis. Dialysis at Sea cruises offers dialysis on regular cruises. Their space is limited as they limit any sailing to a maximum of 12 patients per sailing. The cruise would be perfect to experience with him. And the dialysis is right on the ship so he wouldn't have to travel anywhere like we did when we went to Bahamas.
The Bahamas trip was the first time in ever that we did dialysis outside of our home/hospital. It was a bit pricier compared to some other all inclusive Caribbean vacation spots, but if we heard it had a good dialysis clinic that was clean from another dialysis patient. My family also made the sacrifice at the higher price so that Franklin could come. I was pregnant. All my immediate family went. Parents, brothers and their family crew. 16 of us in total. It was a dream vacation. My family was there to help me with my toddler. My favourite brother went with Franklin twice and my dad once to do the dialysis clinic. Franklin said no one had to come, but as my favourite brother said, if shit was to happen, you need someone there with you. They sacrificed hours out of their vacation so he wouldn't be by himself. Especially my favourite brother. He had S, J, and J with him, but he still went. Man, I love my favourite brother. Always there for us. Always willing to sacrifice without being asked. Never makes a big deal about it. We are so lucky to have him.
It's just in addition to typical vacation costs anyone would incur, we have to add dialysis costs. To the tune of ~$1800. Can we afford it. Not really. But this past few weeks was reality check I needed. Money will not keep me happy. The experience with my boys and the memories will. I keep my head in the sand and keep waiting, but I just don't know how things will be next year. I wished we did the big wedding and vacationed more during the four years he had the transplanted kidney from his generous brother. He offered the gift of life as soon as he found out Franklin needed one. We didn't even have to ask. How amazingly generous is he?!?
No one knows if they will be around next year. You could get hit by a truck! I try to Live Life as much as I can. And so should YOU!
Now to start planning and budgeting as much as we can. Europe, Caribbean, East? West?
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Showing posts with label dialysis. Show all posts
Showing posts with label dialysis. Show all posts
Saturday, March 12, 2011
Friday, March 11, 2011
Not Again - Update
It seems as though Franklin made the right choice. Seems as though..
They immediately do an x-ray, draw blood for testing, do 2-hrs of dialysis using his fistula instead of his line. He has a bit of trouble breathing. His left lung has some noise. Possibility of pneumonia, infection of the dialysis line (which is really scary because it is connected directly to his heart). They give him antibiotics through his dialysis line. They say he should have come earlier. Hopefully, it's still early enough.
The doctor immediately stops use of his dialysis line. He must use his fistula to do dialysis. It is his worst nightmare. He was 'warming up' to the idea of sticking himself with needles to do his dialysis. He wanted to do it on his terms. He must get trained all over again using this method of connection. Drives. Early mornings. Instead of a gentle 8-hr dialysis session to remove the toxins, potassium, phosphates, and liquid, he has 4-hr sessions every other day. This is harsher on the body. The electrolyte levels, etc are all wacked out. In 1 week instead of getting 40-hrs, he will be getting 12-hrs. I'm sure there are more rough roads ahead. But, once we get back on track it WILL get better. It has to. Lord give him strength to get through it all. and me & the kids too!
Last night was pretty brutal. He's freezing with 3 comforters on him while sweating. Then he's too hot. In between he's throwing up (who knows what since he hasn't eaten much in days). He's moaning. He has a fever of 38.8-40 degrees Celsius all night. Between him and the kids I try not feel overwhelmed and just focus making sure to get everyone taken care of. I wrap him in blankets. Leave water by his bed. Feed and bath the boys. Rub Franklin's back. Throw away the garbage bag and replace with a fresh barf bag. Put baby 2 to sleep. Brush teeth and read books with baby 1. Get a refill of drinkage for The Husband. Put baby 2 back to sleep. New barf bag. I'm exhausted. Mentally and physically.
You would think I would just collapse asleep when all my boys are finally sleeping and the house is quiet. I can't. I read my book (love to read before I go to bed). My eyes are tired, but I love the break my mind gets. I am living this woman's life as I read chapter after chapter. It's not exceptional, but I like the basis. A city mom who owns her own advertising business and rides a motorcycle, moves to the burbs to be closer to her ill mother and elderly father. She is the odd mom out amongst the cliquey full-time mommies who wear sweater sets. I once was the city mom. Not that I care so much about being accepted, but the idea of switching from city life to suburb life. Assessing what you want out of life. Putting your parents needs before your own.
The day starts at 5am. But I read what's happened in Japan. Reality check. We are alive. Pray for them.
Read the previous post Not Again to find out what this update is updating.
They immediately do an x-ray, draw blood for testing, do 2-hrs of dialysis using his fistula instead of his line. He has a bit of trouble breathing. His left lung has some noise. Possibility of pneumonia, infection of the dialysis line (which is really scary because it is connected directly to his heart). They give him antibiotics through his dialysis line. They say he should have come earlier. Hopefully, it's still early enough.
The doctor immediately stops use of his dialysis line. He must use his fistula to do dialysis. It is his worst nightmare. He was 'warming up' to the idea of sticking himself with needles to do his dialysis. He wanted to do it on his terms. He must get trained all over again using this method of connection. Drives. Early mornings. Instead of a gentle 8-hr dialysis session to remove the toxins, potassium, phosphates, and liquid, he has 4-hr sessions every other day. This is harsher on the body. The electrolyte levels, etc are all wacked out. In 1 week instead of getting 40-hrs, he will be getting 12-hrs. I'm sure there are more rough roads ahead. But, once we get back on track it WILL get better. It has to. Lord give him strength to get through it all. and me & the kids too!
Last night was pretty brutal. He's freezing with 3 comforters on him while sweating. Then he's too hot. In between he's throwing up (who knows what since he hasn't eaten much in days). He's moaning. He has a fever of 38.8-40 degrees Celsius all night. Between him and the kids I try not feel overwhelmed and just focus making sure to get everyone taken care of. I wrap him in blankets. Leave water by his bed. Feed and bath the boys. Rub Franklin's back. Throw away the garbage bag and replace with a fresh barf bag. Put baby 2 to sleep. Brush teeth and read books with baby 1. Get a refill of drinkage for The Husband. Put baby 2 back to sleep. New barf bag. I'm exhausted. Mentally and physically.
You would think I would just collapse asleep when all my boys are finally sleeping and the house is quiet. I can't. I read my book (love to read before I go to bed). My eyes are tired, but I love the break my mind gets. I am living this woman's life as I read chapter after chapter. It's not exceptional, but I like the basis. A city mom who owns her own advertising business and rides a motorcycle, moves to the burbs to be closer to her ill mother and elderly father. She is the odd mom out amongst the cliquey full-time mommies who wear sweater sets. I once was the city mom. Not that I care so much about being accepted, but the idea of switching from city life to suburb life. Assessing what you want out of life. Putting your parents needs before your own.
The day starts at 5am. But I read what's happened in Japan. Reality check. We are alive. Pray for them.
Read the previous post Not Again to find out what this update is updating.
Saturday, February 12, 2011
Please put him on dialysis Doc
So, you learned how we found out Franklin had kidney problems in The Beginning of this Lifetime Journey post. The next several months were rough. His kidneys were slowly dying. He was staying in bed for days. He was tired all the time, lost so much weight (down to 120-lbs), still had headaches, and was down to less than 10% kidney function.
We talked to my dear aunty and uncle. Uncle (2nd cousin, but a lot older than me, hence calling him Uncle out of respect) was on dialysis. They were the only people we knew who were actually on dialysis and we wanted to know more information about it. Reading pamphlets doesn't really give you the reality of doing/living it. The pros and cons. Which one is better. Each department, hemodialysis or peritoneal dialysis, have their own agenda. The more patients they have, the more funding they get. Sounds cynical? Maybe. But, very real.
They were so helpful and told us what worked for them. They helped more than anyone thus far. I am forever indebted for their openness and guidance.
I remember sitting in the doctor's office at the hospital and pleading with her to put him on dialysis. Please do not wait until he is on death-bed and cannot take care of himself. I still don't understand the hold up. We still had trust and belief in the health care system. We were so naïve.
Her answer was to go to Emergency. It was the only way we could get a bed to then try and get into surgery. WTF?! Well, we did. We sat in emergency for HOURS. Not just a few. I mean 24+ hrs! We wanted to leave, get something to eat and give our gurney to someone else while we wait in the waiting room with the tv. They advised if we left, our bed would be gone. We shouldn't stay in the t.v. room because when the doctor comes by and should we not be there, we would lose our spot and would be assumed gone. No, we will not call you.
We were young. We didn't know how the health care craziness works.
Careful what you wish for. You might just get it.
We talked to my dear aunty and uncle. Uncle (2nd cousin, but a lot older than me, hence calling him Uncle out of respect) was on dialysis. They were the only people we knew who were actually on dialysis and we wanted to know more information about it. Reading pamphlets doesn't really give you the reality of doing/living it. The pros and cons. Which one is better. Each department, hemodialysis or peritoneal dialysis, have their own agenda. The more patients they have, the more funding they get. Sounds cynical? Maybe. But, very real.
They were so helpful and told us what worked for them. They helped more than anyone thus far. I am forever indebted for their openness and guidance.
I remember sitting in the doctor's office at the hospital and pleading with her to put him on dialysis. Please do not wait until he is on death-bed and cannot take care of himself. I still don't understand the hold up. We still had trust and belief in the health care system. We were so naïve.
Her answer was to go to Emergency. It was the only way we could get a bed to then try and get into surgery. WTF?! Well, we did. We sat in emergency for HOURS. Not just a few. I mean 24+ hrs! We wanted to leave, get something to eat and give our gurney to someone else while we wait in the waiting room with the tv. They advised if we left, our bed would be gone. We shouldn't stay in the t.v. room because when the doctor comes by and should we not be there, we would lose our spot and would be assumed gone. No, we will not call you.
We were young. We didn't know how the health care craziness works.
Careful what you wish for. You might just get it.
Friday, January 28, 2011
The Beginning of this Lifetime Journey
A lovely lady messaged me about The Husband.
"Hi Eleisa,
How are you?? Good blogs.. I read all your posts.. they are definitely interesting.. one question popped in my mind when I read the latest blog. You mentioned that Franklin has been go through dialysis for 10 years.. Exactly how did he get it?? It seems scary. I want to do everything possible to not get it.
Hope you and the family are doing well!!"
I've been meaning to tell her what the history was. Well, at least how it started and how we found out. What were the signs? What effect it had on him? on me? on our relationship?
We're in our early twenties and we don't know what is happening and why is it happening. It starts with really bad headaches. At first Extra Strength Tylonal would help. Then the headaches got worse and the Tylonal wasn't helping anymore. It was to the point where he would be in bed holding his head squirming and groaning in pain while in the dark.
Finally, he went to see the doctor. His blood pressure (BP) was 280/140. The doctor advised to get to Emergency right away. That's when he called me to meet him there. He didn't sound different then he usually did, so I didn't understand the urgency. When I met him there, the doctors said he's lucky he was young. Anyone else with that BP would be considered having a heart attack.
This is how we learned his kidney was dying.
A lot of emotions are going through our hearts. How could this happen? Why him? NO ONE in his family has kidney failure. What is his future? Will he live? Do I stay with him? Where do we go from here? When did this start? Could he have prevented it? Many of those questions we still ask ourselves today.
After some reflection, we believe it started when he ruptured his kidneys while playing rugby while in high school. Franklin researched our hunches and there are studies that show that people who have injured their kidneys are 70% more likely to have kidney problems later in life. So, take care of your kidneys.
I remember my dad asking me if I was sure I knew what I was getting myself into. He caveat-ed the harsh reality with "as your dad I just was to make sure you know what you're getting into." Only a parent who loves you and wants only the best for you would ask that. I understand where he is coming from. We are not married. I still have a choice to leave. The future with a partner who is terminally ill will be difficult to say the least.
I still have the same response today as I did all those years ago. I want to spend everyday with him even if it is for 1-yr or 50-yrs. I want to enjoy my life with him for as long as we both shall live.
I still have personal fears. Being alone at 50 with two (maybe three if I can convince him and we are so blessed :) ) and spending my golden years alone. That's the biggest one. But, even with that, I still want to experience every up and down with him. I wouldn't want to do it with anyone else.
Read the next chapter in Please put him on dialysis Doc post.
or
Read more stories about living with kidney failure from the spouses (my) perspective with posts from the Kidney Failure category.
"Hi Eleisa,
How are you?? Good blogs.. I read all your posts.. they are definitely interesting.. one question popped in my mind when I read the latest blog. You mentioned that Franklin has been go through dialysis for 10 years.. Exactly how did he get it?? It seems scary. I want to do everything possible to not get it.
Hope you and the family are doing well!!"
I've been meaning to tell her what the history was. Well, at least how it started and how we found out. What were the signs? What effect it had on him? on me? on our relationship?
We're in our early twenties and we don't know what is happening and why is it happening. It starts with really bad headaches. At first Extra Strength Tylonal would help. Then the headaches got worse and the Tylonal wasn't helping anymore. It was to the point where he would be in bed holding his head squirming and groaning in pain while in the dark.
Finally, he went to see the doctor. His blood pressure (BP) was 280/140. The doctor advised to get to Emergency right away. That's when he called me to meet him there. He didn't sound different then he usually did, so I didn't understand the urgency. When I met him there, the doctors said he's lucky he was young. Anyone else with that BP would be considered having a heart attack.
This is how we learned his kidney was dying.
A lot of emotions are going through our hearts. How could this happen? Why him? NO ONE in his family has kidney failure. What is his future? Will he live? Do I stay with him? Where do we go from here? When did this start? Could he have prevented it? Many of those questions we still ask ourselves today.
After some reflection, we believe it started when he ruptured his kidneys while playing rugby while in high school. Franklin researched our hunches and there are studies that show that people who have injured their kidneys are 70% more likely to have kidney problems later in life. So, take care of your kidneys.
I remember my dad asking me if I was sure I knew what I was getting myself into. He caveat-ed the harsh reality with "as your dad I just was to make sure you know what you're getting into." Only a parent who loves you and wants only the best for you would ask that. I understand where he is coming from. We are not married. I still have a choice to leave. The future with a partner who is terminally ill will be difficult to say the least.
I still have the same response today as I did all those years ago. I want to spend everyday with him even if it is for 1-yr or 50-yrs. I want to enjoy my life with him for as long as we both shall live.
I still have personal fears. Being alone at 50 with two (maybe three if I can convince him and we are so blessed :) ) and spending my golden years alone. That's the biggest one. But, even with that, I still want to experience every up and down with him. I wouldn't want to do it with anyone else.
Read the next chapter in Please put him on dialysis Doc post.
or
Read more stories about living with kidney failure from the spouses (my) perspective with posts from the Kidney Failure category.
Friday, January 14, 2011
Crashing
A rough morning for The Husband. No swimming class for The Boy. and I keep trying.
It started at 4am with Lucas having a poo emergency. Then Marcus cries out for me from a nightmare at 5:30am. Then Franklin yells "LISA! LISA!". That's never a good sign when he's doing his dialysis treatment and needs help. He's crashing. He needs me. I open the saline drip to try to bring his blood pressure back up. I need to stay calm and focused with kids crying in the background and a husband who can barely speak and whose eyes are sporadically rolling back. Long story short after helping him with his dialysis machine and yelling to Marcus that I am helping Daddy and will be there soon, his blood pressure is 99/49.
In all my diet mania I've rid the house of chips and cookies. Most things high in salt or sugar. But, at this time something salty is what the The Husband asks for. I bring him some crackers. Of course after he eats four with not much change, we see that it is unsalted. But, at least he's feeling more stable so I go get the babies. Marcus tells me "I want to be a doctor so I can help Daddy". I want to cry.
Franklin is sleeping. I've made Marcus a peanut butter and jam roll up on whole wheat pita, with a glass of milk, apple juice, and now some grapes. We're watching Kung Fu Panda and will just chill. We have to pick up some supplies at the hospital, so hopefully later will be better.
Hopefully.
It started at 4am with Lucas having a poo emergency. Then Marcus cries out for me from a nightmare at 5:30am. Then Franklin yells "LISA! LISA!". That's never a good sign when he's doing his dialysis treatment and needs help. He's crashing. He needs me. I open the saline drip to try to bring his blood pressure back up. I need to stay calm and focused with kids crying in the background and a husband who can barely speak and whose eyes are sporadically rolling back. Long story short after helping him with his dialysis machine and yelling to Marcus that I am helping Daddy and will be there soon, his blood pressure is 99/49.
In all my diet mania I've rid the house of chips and cookies. Most things high in salt or sugar. But, at this time something salty is what the The Husband asks for. I bring him some crackers. Of course after he eats four with not much change, we see that it is unsalted. But, at least he's feeling more stable so I go get the babies. Marcus tells me "I want to be a doctor so I can help Daddy". I want to cry.
Franklin is sleeping. I've made Marcus a peanut butter and jam roll up on whole wheat pita, with a glass of milk, apple juice, and now some grapes. We're watching Kung Fu Panda and will just chill. We have to pick up some supplies at the hospital, so hopefully later will be better.
Hopefully.
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