VEINS ARE GONE
Few people or even doctors realize that when the upper body veins are used up for IV purposes that a port into the inferior vena cava proposes a death sentence. My doctors have been encouraging me to get a port in the IVC so that finding veins is not so difficult. I am forcefully against this. Their proposal is for ease of IV access. When I have to consider it the question I have to ask myself is, "Am I ready to die if this doesn't work out well? That becomes a pretty serious question. I am fighting for my life with a raging immune disease and in the middle of this I have to evaluate the decisions about the future of my life. It is not something I want to have to do, but do it I must. I guess it is pretty important to stress that a blood clot is what gave me SVC so the risk of another blood clot is high.
posted by creative side @ 1:34 PM
5 comments
5 Comments:
Hi there - My name is Jodi, I am 52 and nearly 4 years ago I was airlifted from one hospital to another when they discovered my SVC clot. It is still in there and just knowing it makes me crazy every day. I am told it is right up against my heart and extends through the superior vena cava up into my neck - whatever those veins are, jugular and subclavian??? Anyway, they sent into "bust it up" though my armpit and crotch, but upon seeing its absolute vastness and location up against my heart, they left it. I swear I thought I was hearing things, dreaming, hallucinating from the drugs - but they did indeed leave it.
Here's the rub - 8 years ago I was diagnosed with a disease called polycythemia vera (too much blood essentially), and needed phlebotomies every month to reduce the volume. I have terrible veins, so my Dr. put in a port in my chest. It rarely worked, but nearly kill me because of the clot! I found out later, a whole host of things, which let me stunned to say the least. First off - I never had the disease, which a simple gene test would have proven, (meaning I never needed phlebotomies, meaning I never needed the port. But I did test positive for clotting disorders, and probably even if I DID have the disease and need phlebotomies, I wasn't a good candidate for the port anyway. I can't find anyone living with this. OMG how few are we??? I read all the time about it happening, especially with chemo patients, but is generally resolved quickly and easily. I am so bloated and my neck feels like I have a blood pressure cuff squeezing it all the time. Like you, bending over is a no no, save for a quick pick up of something I have dropped, and even then could be sketchy! I live in PA, and last week our temps were hovering at zero, but I'm out there with a sheepskin vest because of my linebacker arms that don't fit in to a coat!
Now for the worst of the worst! I am smoking again! I have a husband, 11 years younger than I, who I honestly don't believe gets the fact that I should not be alive. In fact, he didn't even kiss me goodbye as they loaded me onto the helicopter. He says - I knew you'd be OK. WHAT??? WOW, nice to know he's psychic I guess. Gradually some of the facial swelling went down, (it was so severe I had an underbite and could barely talk), but also, gradually my arms got worse, then my belly etc. I am nearly totally sedentary now and it sickens me. My resting heart rate is generally around 100 and rises QUICKLY with any activity, and also results in the ever tightening sensation around my neck and face. I have no ankles anymore, my feet and knees hurt terribly, and yet - I just bought a treadmill because I will surely stroke out or have a heart attack if I don't regain some stamina. My doctors so far have not even returned my phone calls, as to how I should go about using it. I certainly don't want to DIE ON IT.
So have you found others actually LIVING with this? Are there any groups online? It is such an odd thing knowing this giant thing is in me, and having no one that gets it!
Still hanging,
Jodi
Hi Jodi. I don't see a date of when you posted. I don't check this blog that often because it is so rare to have a comment. There is another person who I know that has the same problem. For the good news: you'll probably live if you control your weight and do a weight and floor exercise program to build up your muscles. Weights, and slow walking. Do walk because it helps your veins become accustomed to your body needs (they will do this, but be gradual). For the bad: it is here for your life, your arms will probably always be very large (trouble buying clothes). For the encouragement: I've had this for 24 years and I'm still alive. Diuretics do help and your doctor should have you taking them for comfort. You'll probably also need a potassium supplement because of the loss with the diuretics. Finally after this long I am able to lessen the dose of diuretics. For the precautions: Get rid of that port. I just spent 8 months of my life recovering from a life threatening spinal cord infection caused by my port. They are dangerous. Get rid of it NOW! Reduce your need for needle sticks and your veins will recover some. Reduce your weight!!! I don't know what you weigh, but if you are overweight, reducing it is the only way you will have quality of life with this disorder. Find a job and do it. You can! Get off the couch and bear the pain and get busy. The more you do, the more you can do. The more you sit, the more you die. You have fought hard to stay alive, keep on fighting for your quality of life. My best to you.
Jodi, leave me an email and I will respond to you more personally.
Hi Jodi,
I am a 2 yr Ovarian Cancer Survivor I was diagnosed at 47 with Stage IIIb cancer who developed a blood clot in the SVC and subclavian at the medi-port site. I had a stent placed in my SVC May 2012 and am suffering again with symptoms. My insurance has denied a CT Scan to check to see if another blood clot has developed or if the vein has had more occlusion. SVC Syndrome is draining and painful to me and I feel like I'll never have any energy or a normal life again. How do you do it? Take Care and hugs and prayers to you! <3 Beth
So glad to have found you all! I'm Lisa. 41 years old in England.I've been searching the web for years looking for support groups for svc sufferers. I was diagnosed about 15 years ago with SVC syndrome and idiopathic hypereosionphilia. My spleen & lymph nodes were hugely enlarged so the drs immediately thought "lymphoma". They removed my spleen to biopsy it. My spleen was falling to pieces in the surgeon's hands apparently but biopsy was inconclusive for lymphoma. I had a pulmonary embolism while in hospital following the surgery. I've been on a "wait and see" course of treatment since then. I've been on various steroids, hydroxyurea ( a type of chemo in pill form) and even a trial of Glivec. Nothing has changed. I have just started a modified exercise regime in an attempt to lose weight. Being unable to bend over, exert myself without falling over or passing out has led to a lot of weight gain. I'm immunosuppressed as well so am usualyy laid up every over week with kidney infection or some other bug. Oh yeah, that's another one-I've got one kidney that is severely atrophied & doesn't work terribly well! I'm another one who's husband doesn't really 'get' that this SVC is not something that is going to be cured! My neck, chest and torso are like a 3D road map of veins and I too know the sheer bloody frustration of finding clothes to fit my mammoth upper arms! God bless you all. I'm so happy to have found other SVC travellers! Although not happy that you all suffer from it-you know what I mean!
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