Seeking your support again

[Yvonne]

       All for you Rose, and Mum and Dad, try to keep smiling Yvonne





Edited : Fixed smiley error - paris, Moderator

[Darthvadar]

Hi Rose...

Is there any news of your dad???...

Hope all's going well...

God bless...

Darth...

[rose1999]

Hi Darth and thanks for asking about Dad. 

It's been a week now since the sympathectomy but unfortunately he is still in a lot of pain - it comes and goes but has not reduced as we'd hoped.  No-one told him how long it might take, I was under the impression that it would be immediate, Dad said the surgeon told him 3 weeks (then he said perhaps he'd said 3 days or 3 months!)  but our GP said on Tuesday that it was still early days.  He has prescribed slow release morphine tablets and some stronger Fentanyl patches, but Dad is still in pain.  I have been unable to contact the surgeon as he is now on holiday but I still cling to the (very vague) hope that it may still work.  We can't have him going on in pain like this, it is also wearing Mum down as they are only getting about 2 hours sleep a night, 4 hours if they're really lucky and she is becoming worn out.

Thank you Darth and everyone else for your support, if anyone knows anything about sympathectomies - particularly how long they take to work, I'd be pleased to hear.  I have looked it up on the web  but basically it tells you what one is, not when it should be effective.  Any ideas on pain relief also welcome - the only thing that worked was Lyrica (pregabalin) but that took the use of his legs and he kept collapsing which was far too dangerous.
Love to all
Rose xx

[paul.karen]

Sorry Rose i have no advice to offer.
But your father has been through enough already.  I pray he can get some pain relief.  Does he take any sleeping pills to help et him through the night?

Prayers your father gets back to normal, bless your mother i am sure this is taking its toll on her and as you have mentioned.

Big  to you and your family.

[Darthvadar]

Rose...

While the surgeon may not be available at the moment, it should still be possible to get advice from the hospital... If you phone and ask to speak to the consultant's registrar, you should be able to get advice and information...

Please wish your parents all the very best from me... I hope your dad recovers quickly... For your mum's sake as well as his...

God bless you all... Please keep us informed...

 

Love...

Darth....

[rose1999]

Sorry Rose i have no advice to offer.
But your father has been through enough already.  I pray he can get some pain relief.  Does he take any sleeping pills to help et him through the night?

No he doesn't, we asked the GP about sleeping pills this week but he sad no, he wants to get the pain under control and sleeping pills are not the answer - we had hoped they would be a short term solution to get Mum some sleep (if Dad sleeps then she will).  If things are not improved by Monday I will ask again if he can have them just for a couple of nights.

Thanks Darth, I will see if I can get hold of someone.

Thank you both for your caring thoughts.,

[pelagia]

Rose,

Please post or send me a little more information, if you can, on what they did for your dad's leg and why. Based on what you already posted and what I can remember from earlier, I poked around on the web.  A sympathectomy cuts off the sympathetic nerves to the blood vessels.  Those nerves tell the blood vessels to constrict or dialate.  This can be done either physically or chemically (and I read somewhere that they commonly do it chemically now). My guess is that the effect of cutting the nerve should be almost immediate.  On the other hand, what if the blood vessel is not as flexible as it once was?  Perhaps there is some "stretching" time involved.

This might be difficult, but can he do any sort of exercise to get the blood going in the leg?  Have they said that the problem with pain arises because of poor blood flow (peripheral artery disease)?  That's a common cause mentioned on the websites I've been reading.

 

[rose1999]

Hi Linda
Dad has PVD (veins and arteries).  They tried to do a fem-pop bypass of the leg but said the veins weer too calcified.  His big toe is black and has dry gangrene at the tip but they are not going to treat it unless it becomes infected as they hope it will separate and drop off (sorry if anyone is eating!).  He is in a lot of pain from it, they have tried lots of painkillers including morphine and the only one that worked so far was Lyrica but even in a low dose he kept collapsing so it had to stop. He had a chemical sympathectomy 8 days ago, it does not seem to have helped.  He can't walk more than a few steps so exercise is out, he is also so very tired.  I have bought a circulation booster http://www.circulationbooster.co.uk/gbu0-display/splash.html?&utm_source=Yahoo&utm_medium=cpc&utm_term=circulation+boosterutm_campaign=Circulation but even getting him to use that regularly is difficult as he really is exhausted and quite despondent now, he had pinned his hopes on the sympathectomy.

Thanks for your concern.
Rose xx

[pelagia]

I found an article which offers some insights.  It's pretty long and I can't say I read every word.  (And this message is pretty long too...)

http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=2377607&blobtype=pdf

Some of the highlights I picked up:

"in the diseased lower limb the normal flow may be expected to be doubled by sympathectomy"

There is a bit of discussion to indicate that for physical sympathectomy the flow of blood increases immediately, but then decreases a bit over about a week until it stabilizes.

The article states that depending on the severity of claudication (leg problems associated with PVD), the degree of relief from a sympathectomy will vary.  Briefly:

Grade 1-The patient develops pain on walking, but the pain clears as the walking continues. Sympathectomy not recommended.

Grade 2 - Pain develops on exercise and continues, but the patient can, with effort, still walk. The collateral circulation is here still fairly good but not adequate. Sympathectomy usually leads to improvement.

Grade 3.-These patients are compelled by the pain to halt absolutely. Sympathectomy will not improve their claudication and they may require in addition tendo-calcaneus section (this means severing the Achilles tendon). Before this is done, the hips, knees and ankles should be X-rayed to exclude any latent osteoarthritis which is liable to be flared by the foot slapping action after tendon section. Few patients, except working men, are prepared to change their claudication for a quite unpleasant limp. (and sorry, but at this point I have no idea why cutting the Achilles tendon affects claudication...)

This statement seems important:

"Emotion, fear and pain can cause intense peripheral vasoconstriction, and reassurance is thus an important therapeutic agent."

and the author finishes up with this section (which seems to support the idea of using the circulation booster you purchased):

"Local metabolite formation is the strongest stimulus of all to vessel dilatation, and when the patient cannot walk, his muscles may need electrical stimulation. The use of some endocrine agents, such as testosterone, as vasodilators has a place. Septic foci need to be eradicated, for they are factors favouring thrombosis. Anaemia or polycythiaemia may require correction. Many investigators have stressed recently the importance of the lipo-protein metabolism; and low cholesterol and fat diets may be necessary. A good head of pressure is needed to maintain collateral vessel flow, and the myocardium and general condition needs attention. Too often a sympathectomy is regarded as the journey's end of treatment. In fact, we overlook that we are treating diseased individuals; not merely local disease."

This seems like a tough challenge, but clearly any stimulation of the muscles is going to help, not hurt. 

And here are some excerpts about drug treatments (not Lyrica?) from the PAD section (they don't seem to have a PVD section) on the Prevention.com website:

http://www.prevention.com/cda/vendorarticle/peripheral-arterial-disease/NW706/health/conditions.treatments/0/0/treatment

Cilostazol (Pletal). This drug widens the arteries that supply blood to the legs and is the most effective claudication medication. Side effects are rare and include headache, mild palpitations, loose stools and nausea. You should not take this medication if you have congestive heart failure.

Pentoxifylline (Trental). Used to improve blood flow by changing the shape of the blood cells and to reduce claudication, this medication is much less effective than cilostazol, however, and isn't used as often. Side effects include insomnia, nervousness or red eyes, or, in more severe cases, an allergic reaction, chest pain, irregular heartbeat, severe dizziness, headache, nosebleeds, blurred vision, nausea, vomiting and swollen feet or ankles. This drug is usually considered a "second line" medication.

I wonder too if something like fish oil, which is anti-inflammatory, could help.  Did he ever take that?  I also wondered if acupuncture would help.  They mention it on the Prevention.com site but don't offer much insight.  Based on what I see using Google Scholar, they are trying it for claudication and diabetic neuropathy with some success:

http://sciencelinks.jp/j-east/article/200618/000020061806A0603392.php
http://www.ncbi.nlm.nih.gov/pubmed/17641562

I hope this is somewhat useful.  Hugs to your dad and mom and you, too. 

[rose1999]

Hi Linda
Thank you for all this information.  I have read the article and my main conclusion is that the sympathectmy hasn't worked, although the article appears to be about operative and not chemical ones, however I would expect the results to be much the same?

The main problem with the Pletal and Trental (and any other medication) is that he also has issues with ITP (platelets) and takes 12 other drugs (including Omeprazole and Clopidigrel) and has coronary heart disease - so it's a balancing act for the GP to trade off one issue against another.  He also has an aortic aneurysm, hypertension, gout and angina!

I think we are at the stage where we have to look at pain control or consider amputation which I know he wants to avoid at almost all costs.  Acupuncture has to be worth investigating and I will make some inquiries.  I will also encourage him to use the circulation booster but some days he just doesn't want to be bothered and I fully understand that, he's been through too much.

Thank you for all the time you've put into this I will certainly discuss all of these suggestions and issues with the GP.
Bless you for caring 

[Mizar]

Dear Rose, Anytime there is a Hospital, Involved, it can be Difficult. I Know. Take Comfort, in knowing that there are
People, in the US and other Countries, Thinking and Praying, for You and Your Parents .

[Darthvadar]

Hi Rose...

How are you doing???...

Is there any news of your dad???... Did you manage to get hold of the Registrar???...

Thinking of, and praying for you all...

Take care...

God bless....

Darth...

[rose1999]

Hi Darth sorry for not replying sooner.  Yes I eventually managed to talk to someone and they said that it varies from person to person, with some people it is instant, usually the results are starting to show within 3 days, but it can be longer. However they stressed again that it does not work for everyone and said that if he has no relief after a month I am to ring for an appointment to see the consultant again and they will fit him in within 2 weeks.

We have a glimmer of hope in that Dad hasn't asked for extra painkillers yesterday or today, although he still has the patches and a slow release tablet at night (which should last 12 hours) he isn't asking for a top up in the day as he was last week - he is allowed another slow release tablet in the day if he needs it but if he doesn't then that surely has to be a good sign.

I'll keep an eye on things, at the moment his GP is being very good and I think he will get him sorted if he can, he's never seemed interested before and has a bit of a reputation generally for telling people to "take an aspirin" but to be fair he even rang on a couple of occasions to ask how things are and seems genuinely concerned that he is inpain.

We'll keep crossing fingers and saying prayers,maybe it is startig to work.  Thank you somuch for your prayers, it means a lot 
Rose xx

[Darthvadar]

No apology needed, Rose... Let's face it, you and your poor mum have more than enough to be doing than worrying about replying to me... As a carer myself, I fully understand the priority...

Great that your GP's taking an interest... Sometimes the most appearantly aloof people turn out to be the most helpful... There's a GP in our local surgery who does locum cover... Lots of people hate him, but he and I get along great... We understand each other, and we can BOTH be depended on to let the other one know if they're being a pain!!!... We're both known to tell the other where to go when the need arises!!!... It's respect running in both directions...

Good sign that your dad's not looking for extra pain relief... It'll probably happen that he'll need the odd extra dose, but it's certainly looking promising... It'll be great if this works out for him... God knows he's gone through enough... How's your mum doing???... She getting any more sleep???...

Rose, please feel free to PM me ANYTIME!... As a fellow carer, you're speaking my language... If I can help at all, let me know...

May God bless, and protect you, your dad, and your mum...

Take care...

Darth...

[rose1999]

Today is the first day for over 2 months that Dad has not had any pain at all, of course he's on a lot of painkillers but he's been on those for a while, maybe the sympathectomy is working after all??  His toes look a little pinker (apart fromwhere they are black) and he has managed to get a proper slipper on, until now he's had to wear one with the toe cut out.  Baby steps I know but we have to try to stay positive (hard somewitmes!).  He slept better last night and although Mum is finding it tough I think if she can get some sleep she will feel a little better too.  The downside is that he is very sleepy and seems to have picked up a tummy bug so Mum has had some extra washing (too much info!) but the GP has called and given him something to help.  We sat out in the sun for an hour today (although he slept for a good part of it) and it was nice to get some fresh air, I think we all felt better for that.

  Thanks again for all your support, I can't remember how I found this site but I'll always be grateful that I did, grateful to Epoman for setting it up and grateful to the admin and moderators who work so hard behind the scenes to keep his dream alive . 

Thank you Darth for your prayers and your support  t really does mean such a lot 

[aharris2]

This is good news Rose. Baby steps, but in the right direction. Let's hope his pain continues to diminish and that his need for pain meds diminishes along with it.

Alene and Rolando
 

[Darthvadar]

Oh Rose, it's good to hear that your dad's doing a bit better pain-wise... ... Pity about the tummy bug (I've been there with the results of that little bug)... Your mum and I could compare laundry loads, and detergent... And whether Domestos or Parazone is the best bleach to use!!!...  ... However, on the other hand, it's better than the usual results of the heavier pain meds... You don't want him having the opposite problem!!!... TMI perhaps, but hey... It's one of the joys of being a carer!!!...


The sleepiness may well be as much about his total exhaustion from the trauma of the past few weeks... Now that he's feeling a bit better pain-wise, he may be better able to rest... He won't sleep unless he needs it... That's what Mum's nephrologist says when she's sleeping more than usual...

You're MORE than welcome to any little bit of support I can give you... That's what friends are for, isn't it???... You've supported me when I've needed it!...

Please keep in touch...

Love to your parents...

God bless...

Darth...

[monrein]

Rose that's just the best news!  I so hoope that your Dad continues with lessening pain and less need for as many painkillers.   

[okarol]

  Rose, good news - hoping it gets more stable around there and you can all get some much needed rest!

[rose1999]

Thank you all so much for genuinely being happy to share this bit of better news  .  You are all so kind it makes me quite tearful (in a good way).

Darth you did make me laugh with your comments about domestos etc  we had to throw some things in the bin (wrapped in a black sack).  What with the results of the tummy upset and the blood  all over a white vest that even domestos couldn't shift (nose bleed when Dad fell and banged it rushing to the toilet) Mum is expecting the police to come knocking on Monday when the bins are emptied 

[Darthvadar]

Darth you did make me laugh with your comments about domestos etc  we had to throw some things in the bin (wrapped in a black sack).  What with the results of the tummy upset and the blood  all over a white vest that even domestos couldn't shift (nose bleed when Dad fell and banged it rushing to the toilet) Mum is expecting the police to come knocking on Monday when the bins are emptied 

Oh yes?..... It was a nose bleed, eh???... I don't believe it!!!... ... Admit it Rose, you've murdered someone!!!.... You'll have to stop the slaughter!!!... And be careful with the bin... Legs sticking out over the edge does tend to attract attention!... I DO understand that it's difficult when you've run out of places to hide the bodies!... By the way... Toothpaste takes blood out easily!... And I don't know about your mum, but my favorite bleach is Domestos... Works well, and doesn't pong (quite) as badly as Parazone...!!!...

But I'm with your mum... The amount of black bags I use since Mum went into kidney failure is huge... I'd say I'm not an environmentalist's favourite person!!!... Mind you, the amount of packaging we produce with all the dialysis stuff anyway... Oh boy!...  And it'll get worse this evening... We've a new microwave oven coming... Our present one is on it's last waves... Noticed a spark inside it this morning when I was making my porridge... Time to replace it!... The salesman's a real gem... Rather than charging me a delivery charge, and have me wait for delivery, he said he'll drop it to us on his way home this evening... He's very empathetic to Mum's situation... I LOVE this particular store... They're BRILLIANT!... I never even buy a kettle elsewhere... They provide a great service...

Glad your dad's still doing better... It's lovely to have good news!...

Please give your mum my best regards... She's obviously one in a million!!!... 

Keep in touch, Rose... I REALLY want to know how things are going...

God bless...

Darth...



Edited: Fixed quote tag error - okarol/admin

[rose1999]

You've sussed it, it was the arm sticking out of the bin that gave it away wasn't it 

Thanks for the tip about toothpaste, I'll try that, we have most of it out now (with 1001 spray and a lot of elbow grease) but a couple of spots are proving hard to shift.

Mum is one in a million, she really is. I know everyone says they have the best Mum in the world, but I really do, that's why I like to do everything I can to help her. (Yes she favours Domestos too ).

What a fantastic salesman,you don't find many like that.  I recently bought a new washing machine and our local independent electrical retailer wouldn't let me pay until I'd used it several times and was happy!  Other places want your money weeks before you get the goods.   I always go there first to see if they have (or canget) what I want - and they are no dearer than the chains!,in fact my Dyson was £5 cheaper than the 'offer' at Currys!

I will give your best regards to Mum, she doesn't really understand the internet etc but she does know I have some good friends here. God bless you and your Mum 

[Darthvadar]

You've sussed it, it was the arm sticking out of the bin that gave it away wasn't it

No... It was the fact that you forgot to take the smelly sock off the foot BEFORE putting it in the bin... Gas mask can now be retired now, I presume???...


It IS good to get a good salesman... Mum's delighted with the new micro... We wanted one that had the features of our old one... Fan Assisted Oven, and Grill... And as it's the same brand as our last one, it's controls are very similar... Saves having to learn to use YET another gadget!...

Thanks for the good wishes for my mum, and give your mum my very best regards...

Keep in touch...

God bless...

 

Darth....

[Darthvadar]

Rose...

What's the latest on your dad???... How's he (and your mum) doing???...

My mum's doing very well, thank God... Had a scare during the week http://ihatedialysis.com/forum/index.php?topic=14318.msg251995#msg251995 but everything appears to be okay now, thank God...

How's your usage of black plastic bags doing???... Are you a little more 'Enviornmentally Friendly'?... I can't afford to talk though....

Another mountain of packaging tomorrow... It was my birthday last Wed., and my gift from my godson (paid for by his dad, of course... Clever boy!) is a 42inch TV for the living room!... It's being delivered tomorrow... Well actually, he sent me a cheque for the cost, and I went shopping to my usual haunt to buy it... Same place as I got the microwave... It's nice to support the good local retailer, and these people are great... Mum's like a child waiting for her new toy to arrive... The TV is more for her than me... She uses the Living Room to dialyse, so she spends a lot of time there... This will give her something to do... Watching the soaps!... The salesman even threw in a DVD player, DVD Cable, Wall Bracket, and Delivery too as a "Little Birthday Present"...

Anyway, please pass on my best wishes to your parents... Particularly your mum... I hope she's getting a little more rest...

God bless you all...

Love...

Darth...

[rose1999]

Hello Darth (and everyone)

Dad seems a little better just now, thank you for asking.  He is in less pain -  although still on the patches he isn't taking as much morphine on top (somedays he doesn't need any) so that is a good sign.  It does mean that they are getting a little more sleep. He still gets occasional bouts of vomitting, unexpected so you can imagine the problems!!  The black sacks are less but the use of persil/bold etc is not lessening    We never did get allthe blood out of the carpet so mum is getting that replaced as soon as we can get round to going to look for new floor covering,I've never liked carpet in a bathroom and neither has mum (it was there when they moved in) so we'll get something that is washable.

Sorry to hear of your mum's 'scare' and glad to see it was allsorted, it's such a worry isn't it.  I always fear the worst!

A belated HAPPY BIRTHDAY  ............wish my godchildren were as generous as yours!!  I'm lucky if I get a card. Once again your local retailer has turned up trumps.  I completely agree about supporting them, particularly when they are so good.    How's the recession affecting your town?  Ours isn't too bad, a few empty shops but not bad, although it is only a small town of 10,000 pop....the bigger towns around us seem to have about 30% of their shops empty and it's quite depressing.

Best wishes to you and your mum, I hope she enjoys her (your  ) new TV.
Rose xxx