Coming out as a "ihatedialysis" reader

[florina]

Greetings to you all,

My name is Florina.

I want to drop a line here because for the past 4 years I've been reading and avidly following stories, histories and discussions on this website. It has helped me the most in understanding what my father was going through while I was away living in a different country. My father had been on dialysis for approx. 14 years. I’ve been following your discussions and stories as an observer and I’ve finally mustered the courage to come out.

Please allow me to tell you a bit about my father.

When he was about twenty years old he had kidney failure on one kidney. As a result, they had to extract the kidney. He was able to live a normal life until he was about fifty years old. At this time, the other kidney started causing him problems (kidney stones). He was so appaled by the idea of going to a doctor or hospital (after suffering tremendously in the horrible hospital system of Romania) and he also believed in such nonsense as supernatural healing that he wasted one year going around the country paying charlatans that professed immediate healing by spiritual power.

A year went by, the kidney situation got worse and as last resort he had to go to the hospital. He underwent many painful surgeries in the decrepit Romanian medical system and then went to the US for more surgeries and then came back for more surgeries. When he came back from this hell I realized for the first time how sick he was. Before he went on this hospital journey he was an energetic, cheerful and active dad. When he came back, all his hair had gone white and he was barely walking. For the first time I realized this is serious. I was fourteen.

What follows is a dialysis saga which Im sure many of you are familiar with.. He got put on PD dialysis ( sorry if i'll be using the wrong medical terms - I find it hard to translate my romanian dialysis knowledge into English). He was carrying a bag of surplus exchange in his jeans pocket and showed me this tube going out of his stomach. At the time I thought it looked kind of cool - I was very much into cyborgs and science fiction. I was still really young to understand what was happening and kept thinking a transplant would be a very quick and easy fix.

For a while he was doing dialysis at home and kept on a diet. The thing lasted for about a year, after which the tubes got a terrible infection and clogged. He had to be transferred to hemo dialysis which he hated because of the hideous conditions of the hospital - hot during summer with no air conditioner, only one television that people had to share. On top of that, everyone that he knew there and got along with kept disappearing (dying) and he would hear about their death from the nurses. Sometimes he would come see me right after, sometimes at 4 in the morning. This was still early hemo days, so he would feel quite okay after.

His condition worsened as the years go by. He would get bad days and good days and he would get these incredibly itchy phosphorus deposits on his back, arm, legs. For years on end he tried to find a solution but never could find a cure.  After a  couple of years he contracted hepatitis B and hepatitis C at the insanitary dialysis center and then did a few years of interferon.

Because he had postponed taking care of the initial PD dialysis infection he had to go back to the hospital in Bucharest. I visited him many times. He had lost an incredible amount of weight post-surgery, he was almost unrecognizable. When people lose weight they also seem to lose in height. After, he managed to gain some of the weight back but he was never the same. He became more and more feeble. He got transferred to a better dialysis clinic, with far better conditions and got on night dialysis. He looked less and less like what he used to look like. Dentists refused to do any work on his teeth because of the anti-coagulant blood medicine he was taking for dialysis.

Next time I came back home his condition had worsened and he could barely walk, definitely not go up on stairs. His legs would fill with fluid until he would get dialysis. After a year or so, his stomach would get bloated with fluid instead of his legs. His weekends (going 2 days with no dialysis) would be the worse: pain and suffering. He had a mini stroke that made his speech really strange. This he mentioned in a quick email. Our communication would be sparse - one lines or two lines where he would either say “i feel sick” or “i feel a little better”. That’s when I started going on this website to better help understand what he was going through and the details of his condition and day to day struggles.

I came back to visit him one more time. He was feeling hideous chest pains and we thought he had pneumonia but he refused to see a doctor. Finally convinced to get an x-ray, they discovered he had terminal lung cancer, which had spread to liver and spleen. I was already back home when he found this out. At this point, he couldn’t walk anymore and a friend would drive him to dialysis. The dialysis center doctor refused to take him back because he feared he would die on the dialysis bed and this would affect the statistics of the clinic. In Romania, a bottle of whiskey gift solved this problem. We would talk on the phone everyday. He would tell me about his dreams of walking in the city, strolling down the streets, not being limited to his bed. He was bored and incredibly depressed. He had stopped eating and lost half of his weight. Because of low blood pressure, the dialysis doctor refused to take him in. He died in three days of no dialysis, which was a month ago, on his birthday.

I really just want to thank you all for maintaining this website and to express my support and admiration for what I believe to be true heroism: people that struggle on a day to day basis  with real physical pain. I am a film director and I am currently working on a film where the main character is on dialysis and in a wheelchair. He is the protagonist of this film. I was keeping it as a secret homage to my father, but he died too early and I never got a chance to tell him what my new film is about although he knew I was working on a feature and was very excited to see it...


I will end here. I can’t really tell this story and expect understanding for my friends, or it feels like it wouldn’t be the same level of understanding and compassion as found on this message board.

much love,
florina

[MooseMom]

Florina, what a fascinating post, and I thank you so much for joining IHD and for sharing your father's story.

I wish you all the best in the creation of your film.  We would all LOVE to see it!

I am very glad that you have been following this site and have gained a lot of knowledge.   

[willowtreewren]

What an incredible story, and what love you show for your father.

Thank you for sharing. 

My sincere condolences to you, also for your loss.

Aleta

[amanda100wilson]

I am sorry to hear that your dad went through so much.  It is great that he had such a caring daughter.

[kristina]

Thank you Florina, for sharing your father's very touching story with us.
I am so very sorry to read what he had to go through and I send you my sincere condolences
and I do wish you good luck with the creation of your film which will be such a wonderful tribute to your father.

Kind regards and best wishes from Kristina.

[florina]

Thank you all for the kind words. I am in constant awe of the community you guys have here.

[Darthvadar]

Hello Florina....  to IHD....

We are not the only ones with a great community... You now have a great community to belong to... Looking forward to seeing a lot more of you!...

Darth, Moderator...

[Jean]

Wow Florina, just Wow. What an amazing and heart wrenching time. I am so glad you joined us and shared your story with us.

[okarol]

Thank you for sharing your dad with us. He fought a good fight, and I am sorry about all he endured. Good luck with your film, please keep us posted. 

[florina]

good people of ihatedialysis,

Thank you so much your answers and support. I was so nervous to write this post a year ago... and your welcoming replies helped me a lot at the time when i felt really stuck. I never came back to say thank you so I decided to stop by and drop a line of gratitude and also share with you the poster image of the film that I'm working on and was telling you about:  it's a science fiction film where the main character is on dialysis.

thank you!

Florina

[okarol]

good people of ihatedialysis,

Thank you so much your answers and support. I was so nervous to write this post a year ago... and your welcoming replies helped me a lot at the time when i felt really stuck. I never came back to say thank you so I decided to stop by and drop a line of gratitude and also share with you the poster image of the film that I'm working on and was telling you about:  it's a science fiction film where the main character is on dialysis.

thank you!

Florina

Great artwork on your poster - thanks for stopping by again!

[noahvale]

*

[Zach]

Congrats on your new movie!
And thanks for giving a "plug" to dialysis.
 

[PaulBC]

That poster is amazing, though not for the faint of heart. I was just thinking a lot about dialysis in movies. There's another thread about that. Definitely something we need more of. I'd love to see your film if I ever get a chance.

[PaulBC]

Florina, I just read your first post on this thread. I can see why you are so deeply affected by dialysis. Actually, my father died when I was 14, not under such terrible circumstances, but at a similar age, dealing with a cascade of complications from childhood rheumatic fever. My daughter is 9, diagnosed with ESRD completely out of the blue last October. She is doing great on PD and getting excellent care. There is really no excuse for the indignities suffered by dialysis patients whether it's in Romania or here in the US. Anything that just makes people aware of kidney disease is beneficial. Most people don't even think about it, and I say that as someone who never gave a thought to it before it hit me like a truck.

[Rerun]

Florina, Thank you for finally joining.

           

Welcome - Rerun, Admin.  

[florina]

THANKS RERUN!