HOORAY! Clots going to be fixed - finally ...

[StephN]

Well, gang, after about a year and 1/2 of fighting symptoms of the clots in my major veins caused by my port-a-catheter I finally have someone who wants to "fix" me.

Found a wonderful vascular surgeon who gave me the results of the venogram I had last week. Not only is my sub clavian area of my vena cava clogged, but the vena cava itself right under my lower sternum is seriously clotted. Like the vein there is supposed to have an opening of at least 12mm (about 1 inch) and mine is only open MAYBE 2mm.

I knew it was clotted, but not THAT bad! No wonder I have what look like varicose veins on my abdoman.

So, the plan is to be admitted to the hospital on July 22 for a procedure that will include putting a balloon through that area and maybe a stent. The doctor will decide that when he sees how the ballooning works.

He would usually use the right arm to access the veins, but since I am very protective of that arm due to very slight lymphedema, he said he can use my lower right throat area.

I feel like a weight is off me. This port will also come out, but he does not think he can do much about the clot of my sub-clavian as it is more like scar at this point.

At the end of July I will have had two ports for a total of close to 8 years. Maybe I won't have one for a while, or the doctor wants an ultrasound to check out how my right side looks.

This can't happen SOON enough!! I have not felt really right since I had this port replacement in August of 2006. Thanks for listening, though some of you are familiar that I have this problem from past posts.

[Joan M]

Steph,

Having the port for 8 years must be some sort of a record. I had mine for 3 years and I thought that was a long time.

My port was also interferring with my circulation. After about a year, I developed a series of vericose veins all over my chest. At first I thought I was developing skin mets. All the doctors said it was from radiation, that the treatments had damaged the capillaries and that the blood was pooling and causing tiny veins to appear all over my chest.

Within two weeks of having the port removed the veins were gone.

You sound so relieved. I don't blame you, I was glad when mine was finally removed. Unfortunately, the cancer returned six months later, but Iwas still happy to have the port removed.

Good luck with the surgery. I'm sending good vibes your way.

Joan

[sassy]

I've had my port for over three years, and have decided to ask my onc tomorrow about having it removed. Seeing your posts just removed any doubt I had about having it out.

I'm only using it for annual Zometa and blood draws every three months, so I think I can do without it and its probably best to do so before I have a problem.

[Barbara H.]

Hi Steph,
I'm so pleased that you have found someone who is willing to solve this problem. You will be in my thoughts this month and hopefully the procedure will go smoothly. Have you therefore decided not to have your Herceptin treatment with a regular IV?
Best wishes,
Barbara H.

[PinkGirl]

Hey StephN
I forgot all about that. Now I remember you posting about
it last year. That's great .... I'm glad you'll be getting this
resolved.

[Chelee]

Steph, I do remember you mentioning this long ago. That's great that you found a vascular surgeon that is up for the job. :) Especially since you said you haven't really felt right since that port was put in. It sounds like your going to be in good hands. I am so happy that you found a surgeon that cares enough to help you after all this time.

I know the surgery isn't till next month but I will be keeping you in my thoughts and prayers for a quick recovery. I'm so glad you will finally get this taken care of...you deserve it.

Chelee

[Patb]

Congratulations and best of luck. I know you are
happy about this.
patb

[StephN]

My appointment for this procedure is on Tuesday, July 15th. They were able to move my date up a little, which is great with me!

I am supposed to only spend one night in the hospital under observation, so I am in high hopes that is all.

Am actually feeling pretty good and have been quite busy. We have the visit of a Russian historian from the far east of Russia who is staying a month. This is day 5 and the communication gets better each day. My husband does speak Russian, thankfully. I got her started on her research at the University of Washington and that is also where I will be for my procedure.

I WILL BE PORTLESS. First thing the vascular surgeon will do is take out that port and then try to deal with my vena cava. On Thursday I am scheduled for my 3-week Herceptin. They will use my arm, which I have been trying to avoid all these years.

Your positive thoughts and prayers on Tuesday will be much appreciated. With everything going on I may be off the board for a bit, so don't worry if you don't see me. You are all in my prayers every day.

[Barbara H.]

Hi Steph,
You will have my thoughts and prayers on Tuesday. Thanks for reminding us.
Best wishes,
Barbara H.

[sassy]

Steph,

My thoughs and prayers will be with you. Enjoy your "freedom"!

[Mary Jo]

Thanks Steph for keeping us update. Prayers for a successful procedure MOST DEFINITELY will be said.

Love and prayers....

Mary Jo

[tricia keegan]

Just wishing you well for this procedure and I'll be keeping you in my thoughts and prayers.
When I had the ooph they could'nt get a vein so had to use my neck/throat area too. I felt scared at the thought but it was fine and looked worse than it was.
Good luck and hope all goes well for you.

[tdonnelly]

Hi StephN,
I have a Power Port since 03/2007. Thank you for sharing as I never realized whats involved with this. I will keep you in my thoughts and prayers and hope you have a speedy recovery. Take Care.
Tamara
Invasive Ductal Carcinoma 10/2006 HER2+
SOS Sister of IL

[Jackie07]

Glad to hear the news. Thanks for sharing your experience with us. Will be praying for you.

[Joan M]

Stephie,

Good luck on Tuesday! I'll be thinking of you and sending good vibes your way.

Best, Joan

[caya]

Good luck Steph - You certainly must have a world record for a port - 8 years, wow!!

What a relief for you to finally have it out - I'll be thinking of you on the 15th...

all the best
caya

[jones7676]

So glad to hear you will finally get your problem fixed....good luck

[Jean]

Hi Steph,
Will be saying a vry special prayer for you on Tues. Morning. If it helps you to know that I had all my
herceptin via my arm for the entire year and all went
very well without problems. Have your nurse prepare
your arm by giving you a warm prep towel (my nurse
woul heat up a moist towel wrapped in saran wrap)
in the microwave. This would help the veins.

All prayers and good wishes are with you dear sister!
Hugs,
jean