Jump to content
Diabetes forums
  • Welcome To Diabetes Forums!

    Registration is fast, simple and absolutely free so please, join our community today to contribute and support the site.

Archived

This topic is now archived and is closed to further replies.

Lee73

this is a switch, but...

Recommended Posts

Lee73

Hello all,

 

I am not a parent of a diabetic child, but a child of a diabetic parent.

If you have read about me in the introductions you know that my dad was dxed in his mid-late twenties (I was not born yet) as a type 1 diabetic (it was called juvenile diabetes in those days). As I have also said in these forums, my dad raised four daughters and was extremely active. Having diabetes did not slow him down at all, it just was not really an issue. When my younger sis was dxed with it at age 9 it brought our family right up to speed. My father had been getting really terrible care prior to that. He had been seeing a GP who was an old friend of his and had a practice out of his family home. He told my dad "take your insulin three times a day and try not to eat too much sugar". And that was that. For years that is all my father did to take care of his diabetes. On top of that, my father's diabetes had gone undiagnosed for quite a while. He was a skeleton and ended up in a coma before being diagnosed.

The good thing sort of disguised as a bad thing at the time, was when my sis was dxed my Dad started getting proper care (testing his b/s, diabetes education and counselor and endocrinologist).

Right now my Dad is 69 and he is at the part of his life where well, things are going wrong. I originally came to these forums to kind of seek out others who might be coping with this. My Dad's had full renal failure last april (which coincided with his heart attack and triple bypass surgery). He is on peritoneal dialysis. He has nueropathy. He has surgery years ago on his legs to implant artificial veins because of hardneing of the arteries, which helped a lot with circulation, but the nueropathy is still there. He had a stroke and subsequent surgery on his blocked carotid artery. A week and a half ago he was rushed to the emergency room because he fell and could not get up, then lo and behold in the emergency room he started vomiting blood. Lost so much blood that he went into shock and had to have five transfusions. We dodged a bullet when he was diagnosed with (of all things) acid reflux disease and bleeding ulcers in his esophagus (caused by aspirin he was taking for his heart, ugh).

On the bright side: he has all his toes. He survived emergency triple bypass surgery when the odds were against him. His vision is good. He is still and will always be a wiseass. His doctors marvel at how good he looks for having gone through so much so quickly. He calls the dialysis a piece of cake and he is able to do it himself at home.

He is being released from the hospital today. Yay!

I just wanted to give the perspective of the child (sister, loved one etc.). I am really, constantly amazed by my Dad's strength in the face of his challenges. I find that a lot of people misunderstand the disease and I thought this might be a good place, well, to vent a little (sorry). It has been hard to watch him go through all this stuff, but he is and will always be my hero. He is headed home today and we are all really happy.

Thanks for letting me vent. Phew. If anyone has any comments, words of support or similar experiences I'd really love to hear.

 

Lee

Share this post


Link to post
Share on other sites
lgvincent

I'm sorry he's having such a hard time. I wish I knew some way to help. Is there any chance he can get a kidney transplant?

 

I'm having problems with neuropathy, too, and I've been taking aspirin a long time in hopes of reducing the chances of a heart attack.

Share this post


Link to post
Share on other sites
Lee73

Hi Lgvincent,

 

Thanks for the kind words. My Dad is a trooper and he'll get through this.

When his kidneys first began to fail and his doctor made it clear that he would eventually need dialysis my sisters and I all offered him a kidney. Realistically, my diabetic sister was not advised to donate, but still she offered. My father, however, did not feel comfortable accepting such a donation from one of his children, so we ultimately had to accept his feelings about the issue.

His health is sort of wavering now, though his doctor's say that he could possibly be on the list for a kidney. My Dad has adjusted really well to the dialysis and, as I said the kind he does allows him to do it at home, and make up his own schedule for dialysis.

I am sorry to hear about your nueropathy.

The wierd thing is that none of us knew that my dad had heart problems. More importantly he did not know. That was a shock.

Hang in there. Thanks for the response.

Share this post


Link to post
Share on other sites
Patches_J

I worked in Nephrology for three years before I transferred to Endocrinology. Your dad is an amazing person.

 

Unfortunately most of the people we had in the dialysis unit were diabetics. The older generations did not have the education that today's diabetics have. My son is Type 1. I'll never forget the day he was diagnosed. I was working Nephrology at the time. The Endo came in, I know him well, and he says to my husband, "You think you're having a hard time. You have no idea what your wife is going through. You are thinking diet and insulin injections where your wife is thinking dialysis, heart failure, eye failure. She sees the end because she works at this everyday. You have no clue as to what she's going through." And it was so true. Injections didn't even enter my brain it was watching him on a dialysis machine that was in my head. Congestive heart failure, retinopathy, peripheral neuropathy. It's not easy when you are the parent or the child.

 

PJ

Share this post


Link to post
Share on other sites
Mick

Lee--

 

It was nice getting your perspective from "the other side"... I'm the dad in my case--diabetic for 40 years, diagnosed as a child, now with my own daughter grown and in her 20's. Sometimes I have wondered how or if my diabetes (yeah, and MY heart attack and triple by-pass...) impacted on my children during their growing up. My kids have never mentioned to me that I'm any kind of inspiration (yet), but I'd hope that my lesson might have taught them something!

 

thanks for sharing,

Michael

Share this post


Link to post
Share on other sites
Lee73

Hi Patches J,

 

Yes, your perspective must have been very difficult having worked in nephrology. My sister also has type 1 diabetes, and as I said, when she was diagnosed it opened up a whole new world of information and education for us, that was not so readily available when my father was diagnosed.

Your son is lucky to have you as a resource, and while your knowledge might also be frightening (having seen the worst case scenario) you can work with him toward the best case scenario, which is a long life of health. Knowledge really is the key.

I have found this website very helpful. There are so many people working towards a healthy lifestyle. There is so much awareness. When I was younger I would have loved to have had this as a resource to learn more about my father and sister's condition.

How old is your son? How long has he been type 1? My sister was diagnosed at 9 yrs and is now 30. She is in very good health and has a good attitude. It has been particularly hard for her to see my father go through these health complications, but it has also been very inspiring for her.

I wish you and your family all the best,

Lee

Share this post


Link to post
Share on other sites
Lee73

Hi Michael,

 

I am sure that your kids see you as an inspiration, now, getting them to admit it might be a different thing.

I think things really changed in our house when my sister was diagnosed type 1. Diabetes became a family affair. It was no longer just this thing that my Dad had where he had to take insulin shots. It was like a whole revolution of info. "You mean you have to test your blood sugar?!" We had really been clueless. My father and my sister also became much closer, sharing a condition (and insulin and testing supplies etc.). So, I guess it was just something that we talked about a lot as a family.

Your situation sounds very similar to my dad's in terms of the heart attack and triple bypass. How are you feeling these days? I hope all is well. I wish you the best.

 

Lee

Share this post


Link to post
Share on other sites
Lee73

P.J.,

 

Almost forgot.

My Dad has been on peritoneal dialysis since last April and he has taken to it pretty well. There is a whole world of info we had to learn about that. He likes it because he is able to do it at home and even while he sleeps (he can even do it in the car-not when he is driving of course). He chooses his own schedule of dialysis. His dialysis "team" is great.

In our minds (and in my Dads too) we were all kind of dreading the day he'd have to go on dialysis, but thanks to his doctors and the dialysis team and my dad's own positive outlook it was not such a dreadful experience.

 

Lee

Share this post


Link to post
Share on other sites
Lee73

Hi All,

 

I thought I would update on my Dad's condition. This past month has been very difficult on all of us (my family and especially my dad). Dad has been in and out of the hospital, basically, all month (fortunately february is a short month). After being in for three weeks he was finally strong enough to go home, but then only days later a stomach virus landed him back in the hospital. They got the virus under control and then...his b/s was in the 500's he fainted and went back into the hospital. Well...turns out his pump was malfunctioning. He is now home again (as I write this) but we are on pins and needles. He has peritonitis, which is a complication that can happen with the peritoneal dialysis he is on and will have to do his dialysis at the hospital today.

It has been really hard on all of us to see him go through all these complications. I am especially grateful to these forums for giving me a perspective (much needed) and a place to vent when I need to.

Some good news is that he will be getting a new pump (he now uses the minimed (?) I think). I am not sure what his new pump will be but supposedly it will be more modern and easier to use. I will get more info on that. Anyway, I am grateful to these forums and if anyone has any words of advice, comfort (even a bad joke) I could use them.

 

Lee

Share this post


Link to post
Share on other sites
am1977

Hey Lee,

 

Sorry to hear you are going through a rough time. I'm sure it is very tough to watch someone deal with the complications that go along with this disease. I've thought in the past that having the disease is so much worse than watching someone deal with it, but sometimes I am not so sure. I'm sure it can make you feel helpless at times and as if your hands are tied. But I think him knowing that you are there for him and supporting him in getting better is something that IS helping him.

 

My thoughts are with you and your family right now.

 

Hang in there.

Share this post


Link to post
Share on other sites
Lee73

Hi Andrea,

 

Thanks for the kind words. It can be difficult to watch someone suffer through the complications of diabetes. Fortunately I have two examples in my immediate family. My younger sister also has diabetes (since she was nine) and hers has been pretty well under control for a while now and she is quite healthy. My father was never really all that proactive in his health care, he had horrible advice from his old doctor and did not start seeing an endo until he had already had diabetes for 15 years. Scary. But true.

I suppose children have their whole lives to prepare for the loss of their parents, but somehow, I don't feel prepared. I am not handling it as well as I thought I would. I live three hours away from my parents, which is not that far, but in times like these it feels a million miles away. I am having a hard time moving forward with my life here (in NYC), but I am trying to keep my chin up.

 

Lee

Share this post


Link to post
Share on other sites

×

Important Information

By using this site, you agree to our Terms of Use.