Long Term Complications

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Andrea

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Type 1
I've been a Type 1 diabetic for 45 years and have not been that well controlled. I now have many complications associated with diabetes - I have very poor circulation and have had my right leg amputated below the knee. During DKA I suffered kidney failure and went on dialysis. The kidneys seems to be working well enough now to mean I don't need dialysis anymore but they are not functioning that well. Also during DKA I suffered with Compartment Syndrome which resulted in nerves and muscles dying in my forearm, culminating in a permanently "clawed" hand with very little feeling in it. Luckily it happened in my left arm as I am right-handed 🙂!!

I have had a LOT of laser treatment on my eyes and have had many haemorrages in both of them - sometimes so bad I need an operation to clear them.

I have high blood pressure and some heart disease.

Is there anybody out there like me? If so, I'd love to know how you cope and perhaps swap notes, etc.

Love to you all.

Andrea
xxxx
 
Hi there, sorry to read your story but glad you have found this place to chat to others in the same position...

I have been diabetic for 21 years and no complications as yet... although im told that I need to be less obsessed with losing a leg in the future and enjoy the here and now...🙄

I have always had reasonably good control but still everything you discus actually makes me realise how much others (non diabetics) take things for granted...

Sorry I havent been any help but just wanted to say hi and welcome.. Can I ask when you say your control hasnt been always good what do you mean numbers wise? (hba1c's) xxx
 
Andrea

Good to hear from you. Control was much more difficult 45 years ago, with no home testing, only mixed insulins, less accurate dosing (U40 and U80, rather than today's U100 [100 units per ml]), lack of food labelling etc. When did HbA1c testing begin?

Loke, Lou, I was also diagnosed relatively recently (15 years ago), so haven't had any complications (yet or possibly ever).

There are a few people with complication who post here, so hope they'll be along soon.
 
Hi Andrea, so sorry to hear of all you have had to endure :( Hopefully, with good treatment and better control the progress of any further complications can be slowed considerably. I see from your earlier post that you are booked to go on a DAFNE course next week - I am sure you will benefit greatly from this, in particular by being able to be amongst fellow diabetics who can understand what you are going through. Is this a prelude to going on a pump? What insulin regime are you on currently?

I have only been diagnosed for a couple of years, so I don't have direct experience of the problems you have had to deal with, but we do have members who have had amputations, significant eye surgery and varying degrees of neuropathy, so I am sure they will be able to share experiences and coping strategies with you. I look forward to hearing more from you - let us know how the DAFNE course goes! 🙂
 
Hi Andrea,

Just wanted to say welcome to the forum, and sorry to hear of your problems.

I hope you find this place useful and informative and we are always around to offer help and support.
 
Hi Andrea and a warm welcome to the forum, so sorry to hear of all your complications your one strong woman.I know of some in here who have laser treatment so will be able to tell you there stories x
 
Hi Andrea

It's good to see you posting on the site. I'm undergoing laser at the moment but it's for narrow angle glaucoma which is probably diabetes caused but I've not had laser for the diabetic retinopathy. I'm being a completely wimp with the laser because it was painful and they are now very concerned that I could a sight threatening acute attack before the lasering is finished so have been on a few eye drops. I'm trying to take each day at a time but as I'm signed off work at the moment because of the eye problem I'm not always as positive as I want to be. How do you manage with so many rounds of laser - what coping mechanisms do you have? I'm sorry to hear about your kidneys and arm, that must be frustrating. I was diagnosed with diabetic gastroparesis a few months ago - I'm gradually getting used to it and trying to get back to the person i was before these problems but I sometimes feel like that person will never return. What do you do to make sure you enjoy life with all of these challenges that you've been presented with? Really look forward to hearing from you.
 
Hi Andrea,

Sorry to hear what you've been through - like others have said, control wasn't easy years ago! I've had t1 for 31 years now, thankfully the only definitely diabetic problem to date has been proliferative retinopathy. It's also possible/probable that the severe pre eclampsia I had first baby round was diabetes related too. Eye wise, one eye is ok at the mo, the other is a persistent blighter for bleeds... even now typing this with those lovely black splodges all over my vison, grr! 🙄 I think it was all accelerated by pregnancy, at least I hope so as maybe with good control now it might stabilise.

As for coping...I guess it's the old thing of one day at a time. I do find more recently stress gets to me a heck of a lot more than it used to, esp round the time of the eye appts/lasering. I guess the degree of stress experienced might be something non diabetics, or those who haven't experienced retinopathy might find hard to understand, but you never appreciate your vision til it's affected I guess! - I had a major falling out with my dad last year over how stressed I was getting & I suspect hubby gets sick of my going on about bleeds etc too, so sometimes I feel like I can't verbalise how I feel to the people who should be closest to me... :( That's where this forum can be a lifesaver though, thank God it's here!!

A big warm welcome to the forum! 🙂
 
Ooh Andrea - 45 years. I've done 33 and like others have said it was pure guesswork when I was diagnosed in 1977, really and truly it's a wonder any of us survived. Have a look at the "Do you remember" thread where we've all been talking about the bad old days of Clinitest etc!

I've had some lasering to my left eye which I didn't like at all but my worst thing is that I had a stroke on August 9th this year. I'm still coming to terms with the fact it's happened even though physically I've made a good recovery, emotionally I just want to scream. The only thing they seem able to put it down to is long term diabetes, my cholesterol is 5.6 and a scan of the arteries in my neck was clear, am awaiting results of a heart scan.

I have an eye appt tomorrow and am in a state of stress about the results of that and yet stress is bad for me so I try not to let it take over. I am so fed up of people not really understanding. Just the day to day struggle of diabetes is all consuming at times without these additional worries.

You've got more than your share of problems, hope you find benefit from joining us all here, it's been invaluable for me. xx
 
Helo Andrea, Iv had it 36 years and thankfully I have had no problums at all except poor controle. I have been having a mone on hear today and after reading your post thought that I was wrong to mone. You are a strong person with everything you have. Ihave been on the Dafne and found it helpfull to chat to others. Sorry I could not help but hi anyway🙂
 
Hi! Sorry to hear about your problems. I have been on insulin for 43 years now. The one thing you must not do is beat yourself up about any problems as although good control is very important there does seem (from long term involvement with a support group) to be an element of luck in it. Genes also come into it. Until this year the couple of issues I have had could be put down to the old "wear and tear". Four years ago I had cataract treatment but then there is a link to high VDU usage and other non-diabetic members of the family have developed them at a similar age. Eighteen months ago I developed "trigger finger" which is extremely annoying but then my non-diabetic hairdresser who is ten years younger has it as well. This year I developed a circulation problem in my left leg and the thought was that there was potentially a link with the femoral fracture I had a couple of years ago. However the problem is now severe in that leg and moderate in the other so I have to accept that the dastardly diabetes has finally got me! I am now awaiting a scan but it is dragging on far to long in my opinion. I am more than sure the people here will give you that extra support and understanding that is often hard to find!
 
My husband had circulation problem in his left foot and his toes went black. Thought he was going to have them off. But hes fine now. Thy just put a anjiplastie (carnt spell that) in his leg and its o.k, back to normal. Took a few weeks but the hospital was great.
 
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