? normal for portacath

[Chirley]

Hi, I have a right sided portacath which was inserted in February 2007. I have not had any problems with it. It does not give blood easily and therefore the blood taken from it is not able to be tested because the cells break and the test is not reliable.

About 2 weeks ago, one of my colleagues at work noticed that my right hand was, in her words " mottled blue" and my left hand was white. I hadn't noticed this before. Since then I've noticed that this happens a lot but I can't work out whether my right hand is darker than normal or my left hand is whiter than normal.

I asked the nurse in day care last Monday and he said that he thought my left hand was abnormally pale and that I should have some tests done to find out why.

I'd be interested to know if any one else experiences this. Is it just a variation of normal due to the portacath? If anyone else has this, has it caused any problems?

I Googled to see if I could find any reference but didn't find anything helpful.


Thanks

Chirley

[Birgitta-A]

Hi Chirley,
My port was inserted in January 2007 and there has not been any problems with transfusions or Desferal infusions. I have a feeling that the blood they take from the port can be diluted (the nurses tell me I am wrong) so they always take blood for testing from my arms.

It can be possible for the port to have impact on the blood circulation to the arm because the catheter in your port can run from the portal into the subclavian vein. It may be better if the catheter runs to a bigger vein like superior Vena cava.
http://www.breastcancer.org/treatmen...view/ports.jsp
Kind regards
Birgitta-A

[Frank Winn]

Chirley, I have never had a port. Diagnosed Sep 2006. Most of this time I have experienced bruising under the skin which starts at the large knuckels of both ads and runs u to about mid-way of my forearms. My MDS has now migrated to AML and just finished 2 1/2 cycles of Vidaza. Last Thursday my eyes got very red.they discontinued the Vidaza and the baby apirin, By Saturday morning I had the blackest eyes that any boxer has had. Tests so far indicate that my platelets are not working like they should causing low clotting factor. Some of the blood test will take 2 or 3 weeks to come back. In the mean time the plan is to restart Vidaza whentime for cycle 4v. Other counts are getting better each time blood is drawn.

When I started out to write this I thought I might info that might be related to mottled blue hands. Not sure I have adding anything relative to your problem, or not.

Good Luck and God Bless,
Frank

[Chirley]

Thanks for that Frank.

Turns out that I have had a hidden infection. I attended my GP with fever and sore ankle, was taken to hospital by ambulance and had to be pumped full of fluid to try and keep my blood pressure up.

We don't know where the infection started but it has lodged in my left ankle which is taking a long time to improve. I'm at home now on a CADD pump which is giving me antibiotics every 8 hours with a low dose antibiotic flush every minute or so as well. I also go to day care every day to have more antibiotics and have my CADD pump refilled.

The interesting thing about all this, is that when I was in hospital my blood transfusion requirement got worse. Instead of having a transfusion every 2 to 3 weeks, I needed a transfusion every 2nd day. The doctor said that fever can eat up red cells as well as knocking my already fragile bone marrow around. The good news is that my neutrophils responded and went up to 1.5 for a day before they fell to between .5 and .9 again. I know that it was a small short response but it was great that the neutrophils came up at all. Also, my platelets dropped which is unusual for me. The doctor said that I had petechii (sp) and purpura on my ankle as well as the swelling etc and I assume this is where the platelets went.

Any way, what I was getting at, was, that my hands have been the same color ever since I've started on the intravenous antibiotics. I think the color change must have had something to do with the infection but I don't know what. Maybe it's because I have an IV running into my port continuously now as well.

I know that this is a long post, but, I'm not supposed to walk around much and I'm starting to get very bored and restless. I think I'm going to get desperate enough to watch THE BOLD AND THE BEAUTIFUL......now that's desperate isn't it??

Thanks again for the reply.

Chirley

[Birgitta-A]

Hi Chirley,
Too bad with an infection like that! Hope all counts will increase when the infection is treated .
Kind regards
Birgitta-A

[Chirley]

Isn't it frustrating when you do everything you're told and you still don' t get better?

I'm still on the CADD pump at home with Cephazolin 1g every 8 hours, I'm going to day care every day for 240mgs of Gentamycin and today the haematologist added Dicloxacillan 500mgs every six hours orally. It's not working. Yes, the fever is gone but the ankle is extremely swollen (can't move the joint due to swelling). It is also very red and reasonably painful to walk on.

I was almost accused of walking on it too much. (I wish). I was told that if it doesn't start improving soon, I'll have to go back into hospital.

I'm resting, iceing and elevating the leg. I'm not using a compression bandage because I was told not to. Any suggestions for reducing the swelling? I thought maybe some light massage by one of my friends but I'm a bit afraid because it's so tender.

The ultrasound showed that I had fluid in the achilles bursa and in the anterior and posterior tibial tendons. As well as diffuse oedema and hyperaemia of the tissues. No collection or abscess was shown. It said that I had severe cellulitis, this despite having been on antibiotics for many days by the time the ultrasound was done.

Please, if you have any suggestions. I would be very grateful. I HATE HOSPITAL.

Chirley

[Birgitta-A]

Hi Chirley,
I am afraid that I don't have any new suggestions about how to treat your ankle - resting, iceing and elevating the leg should be OK. It must be good signs that the fever is gone and that you don't have an abscess.

Perhaps part of the fluid is blood due to low platelets during the infection. Hopefully the fluid will be resorbed soon.
Kind regards
Birgitta-A

[Chirley]

At long last. It looks like I may be able to finish my daily visits and my IV antibiotics at home. My ankle has lost most of its' redness and heat, my fever is gone and it's a lot less painful.

I have been going to day care everyday but haven't seen my doctor since Saturday when he added in a third antibiotic because my ankle wasn't getting any better.

I have an appointment to see him tomorrow and I'm very hopeful that I can have the CADD pump taken off.

Unfortunately, my ankle and foot are still very swollen and this has not improved at all. I was thinking of buying a compression stocking. I will ask my doctor if this is okay but I can't see why it would be a problem.

Wish me luck. I feel like I've been hooked to this machine for a long long time.

Chirley

[Birgitta-A]

Hi Chirley,
Good luck with getting rid of the pump!

I use compression stockings since many years to prevent sores at the ankles and if your doctors says it is OK you should be able to use one too for your swollen ankle. Then I try Hirudiod creme too to get rid of brown pigmentation over the ankles.
Kind regards
Birgitta-A

[tytd]

Birgitta,
I was curious about your suggestion about Hirudiod cream. I have ugly looking lower legs due to brown pigmentation from years of low platelets. I didn't think there was anything that could remedy this. Does this cream work on old chronic scars and do you need a prescription for it? Any internal side effects? Thanks

[Birgitta-A]

Hi tytd,
In Sweden you can buy Hirudoid Cream without prescription. I use it for bruises and on my ankles. It can take more than a year for a blue-black big bruise to disappear completly. My ankles have a slight brown pigmentation that never disappears.

My platelets have been low during a long time - they were low May 2006 when I got my dx and had probably been that for years when I didn't know I was ill.
Kind regards
Birgitta-A
Last platelet count 44

[Chirley]

Hi, I was wondering if the skin discoloration around my ankle would improve. I have Hirudoid cream but hadn't thought of it for the ankle. It can be bought over the counter at the pharmacy here but it's quite expensive at $16.00 for a tube about 2 centimetres long.

The good news is that I have had the CADD pump removed and I don"t need to go to day care for extra antibiotics. The not so good news is that, the infection is still there and I need to take oral antibiotics for at least another 3-4 weeks.

My doctor wants me to apply a compression bandage to my foot, heel and ankle. I asked him if I could wear a compresssion stocking instead and for some reason, he wasn't happy with that. The infection is still making my counts drop and he wanted to give me another transfusion today but day care was very busy, so I'm having the transfusion on Tuesday instead. If I had had a transfusion today, it would have made 4 transfusions in 10 days.

I am very grateful for blood donors, what would we do without them?

It's a beautiful Thursday evening here and I'm going to sit in the garden and enjoy.

Chirley