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PICC lines and ports and more, oh my


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#1 KarenL

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Posted 03 March 2008 - 01:30 AM

Hi everyone,

I know, I'm usually upbeat but this is really getting me down. First of all, I just spent 4 days in the hospital getting my long awaited flolan infusion and it doesn't seem to have worked! :( My doctor is disappointed too, but my Raynaud's is no better. They used a PICC line, and I came home with it. It was awesome, not to have to get poked so many times, at least now they all realize I have no veins. Now, it seems my iron is so low, I'm not making red blood cells and I'm close to needing weekly transfusions! No wonder I've been falling asleep at the drop of a hat! Anyway, the plan is, tomorrow they are putting in a port so I can start on weekly iron infusions. I still have hope that it will help with at least some of these symptoms. I remember when I was diagnosed 2 years ago, the rheumatologist said I'd eventually need a port, and It seemed so far away. Now, it seems eventually is here. :o :unsure:

I fear I'm becoming clinically depressed. I am 50 years young chronologically. Mentally I feel about 12. Physically about 70. I'm in the midst of so many treatments, I can barely work part-time. I'm a teacher and I NEED to teach. It's my vocation! I am currently substituting per diem and am taking my tests to transfer my certifcation to another state. Some days, I think what do you think you're doing?? You can't have a full time classroom! No way.

Yesterday I had to sit down three times after standing for just a half hour! A simple food shopping is some days too much. I get these horrible lower belly pains that "they" think are adhesions from surgery. I'm being treated for that as well. On top of everything else try to schedule in special time with my husband or time with my 16 year old and I'm reduced to a crying mess feeling sorry for myself and it's not pretty, nor is it ME! I've always been the happy smiling optimistic one. Where is that lady in the picture?? :unsure:

Any words of wisdom, hope, or optimism is needed here. Hubby thinks I shouldn't spend so much time looking at and reading about scleroderma as he comes from the school of positive thinking. While I agree, I also NEED to KNOW. I can't go through this blind. Oh, and what to expect getting the port put in, recovery from that and long term care?

Karen

#2 Shelley Ensz

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Posted 03 March 2008 - 03:44 AM

Hi Karen,

Well, on the positive side, you have all the sclero fashion accessories now -- both a PICC and a PORT. :D

I'd suggest that you share with your doctor all your symptoms now, including those that may be of depression. We all go through an adjustment phase that often requires some counseling to help get us over the hump, particularly in learning how to accept and deal with the effects of chronic illness. And it may also be that you are just experiencing side effects of severe fatigue.

Since you feel a strong need to know what's going on, don't discount that or try to avoid it. Rather face it head on and use that drive to muster up all the resources you can for coping with this enormous change in your life. It's a great time for reading books on chronic illness. Our Voices of Scleroderma book series may help in this regard, with over 100 patient and caregiver stories in each volume. I suggest reading it in an effort to glean attitudes and develop more emotional heartiness (same with the forum for that matter) as it is way too easy to for us to let the illness get us down if we are not on guard for ways to let good coping examples build us up.

Don't worry, you'll make it through this time...but it is important to fight back now with every stress-fighting and life adaptation skill you have (and then some)!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 omaeva

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Posted 03 March 2008 - 05:11 AM

No words of wisdom here but lots of words and thoughts of support for you!

#4 lizzie

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Posted 03 March 2008 - 05:36 AM

Hi Karen ,

Firstly re the Flolan. I have Iloprost (which I think is similar to Flolan) every 8 weeks at the moment. Although for me it does not seem to have an immediate effect ( my hands are always freezing when I'm in hospital actually having the I/V) over the following week or two after it seems to kick in more. I can certainly tell when it is begining to wear off (after about 8 weeks) as my hands are much worse.

I can relate to some of what you are going through - although not sure I have any words of wisdom. I too am 50+, look much younger but my body feels about 90 never mind 70 - thats apart from looking almost permanently six months pregnant! I work , but recently have missed so many hours through going for various investigations or outpatients appointments and am also in hospital for a week every 8 weeks for Iloprost, but still have to make the deadlines , so also spent quite a lot of time working in the evenings and the weekend - my husband/son barely see me. although basically optomistic by nature , I do sometimes feel sorry for myself and get a bit weepy and find that a good cry actually helps me regain some equilibrium - bit like a thunderstorm claering the air. My husband is also one of the if you don't read about it and it won't happen types- I think quite a lot of men are.
Hope you are feeling a bit brighter soon
Lizzie

#5 Gidget

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Posted 03 March 2008 - 05:55 AM

Karen,
I have a port and love it. It has made life soo much easier as I have over the past year gone from situations where it needed to be accessed weekly to where it is just accessed every other month. Initially, I felt very much like frankenstein as you definitely can see if you wear a wide V cut tee shirt but the offset is that I don't have to suffer with having blood drawn, etc.. Best of luck. I am so sorry that things are not going better. Regards. Gidget

#6 Sweet

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Posted 03 March 2008 - 07:40 AM

Oh Karen,

I wish I could give you a big fat hug right now. I've experienced, and continue to experience some of the feelings you have described and I know how heart wrenching it can be. My life has changed so much. I worked my whole life in the corporate world and now that I don't anymore, it's tough. I think we tend to define ourselves by our work. I'm working through it, realizing or trying to anyway, the value to my life without work.

You are going through so much right now, and when you are at a point where you really don't feel well, it's easier to feel depressed and wonder what's next. Hopefully you will have a day soon when you don't feel as bad and can capture some of those feelings when you think you could take on a whole classroom!

I get offers of employment off and on and some are very flattering, and in some instances I want to jump right on it, and then reality hits a couple of minutes later and I think "Who am I kidding"

It's tough when you feel your life is a series of appts and trying to balance how you feel. I keep telling myself and a few friends, that I refuse to be defined by this disease, but that's easier said than done. This may sound trivial, but try to think each day about the blessing you do have. Write them down and look at them often.

Take care.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 Susannah

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Posted 03 March 2008 - 01:51 PM

Hi Karen
Oh my...you have done soooo well!
I know how it feels with so many things suddenly happening all at once, being poked and prodded, tested and analised. It makes you feel so vulnerable and frightened. I remember crying for days about the unknowness of it all.
Please, Please let yourself off about the way you are feeling, it is so normal and know that better days ARE ahead. Half the battle is acceptance of what is happening to us and learning to go with the flow.
Im glad the PICC line worked well for you, I done a bit of asking around the hospital here when I went for a blood test and found it to be a common practice here in NZ too. Its so nice to learn something new. I know you will love your Port too, once the swelling settles as Im so relieved to have mine. I find not many doctors have come across them or it has been years and years since they ever accessed one, I feel quite clever telling them what to do.
Ports can stay in for years and the one I have has to be flushed once a month. I usually need a blood test every 2 weeks anyway, so that deals with that. It feels a little strange there under the skin for a while until you get used to it.
All the best Karen, by the time you get this, I'd say you have already had your operation.
Id love to hear how it got on!
Lots of Hugs
Susannah x

#8 peanut

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Posted 03 March 2008 - 01:55 PM

Karen,
* * Hugs * *
I'm 28, my lungs are 84 and I feel old every day. I walk slow, take a million meds, and prefer to eat soft foods. Yet, my hubby who is 29 is the one who got the AARP membership card in the mail. :lol: Despite feeling like that someone asked if I was 16? :lol: No wonder I'm all mixed up.

I share all this in hopes you will smile and laugh. Fatigue is not easy. I've found energy getting vit-B complex shots every 2 weeks, but the best idea is to give yourself grace to pace yourself and a chair cause I can't stand for too long either. It's so hard to know our boundaries. Some days I feel decent so I try and do errands - and other days I'll do the same errands and it's way, way too much. A few times I've had to pull over and nap in my car cause fatigue hits me so fast and hard. All I know is that we gotta keep movin' cause that keeps up the hope.

hearts,
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#9 Snowbird

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Posted 03 March 2008 - 02:01 PM

Hi Karen

Not a lot of wisdom from me either I'm afraid.

You've made it this far and no doubt, you can make it through this too even though you're feeling uncertain about things right now. It's such a huge let down when things don't work out the way we were hoping they would.

Remember there's no shame in getting help when we need it, so if you need to, please talk to your doctor about depression.

PS, I'm sure that lady you mentioned is just hiding in the shadows...I'll bet she's in the mirror, just take a peek! :)
Sending good wishes your way!

#10 KarenL

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Posted 03 March 2008 - 02:46 PM

Thank so much ladies!

Every single one of your posts made me smile. Wow, I needed that. I am currently seeing a therapist for talking things over and she's been very helpful helping me see that I need to concentrate on myself. It's just so unusual after 23 years of mothering and 25 years of teaching. I'm used to being the caretaker and not very good at being the one who needs care. I am learning though and so very lucky that my husband adores me and loves to care for me as well. He had to flush my line this morning and it was so touching. Anyway, I'm a little scared about the port tomorrow, but I have an excellent medical center and an awesome doctor whom I trust 100%. Whatever will be, will be. Thank you all again, this site is my sanity. Soooo glad you are all out there and we can help each other in times of need. I'll let you know how it goes...nitey nite.
Karen

#11 KarenL

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Posted 06 March 2008 - 02:25 AM

Hi all,

I'm back. :) The port insertion went without a hitch, the novacaine shots to numb the area were tough, but then the conscious sedation was nice. I'm still quite sore, they made two incisions and I can't shower for a week...blech.

The flolan didn't work, :mellow: and so now the battle between my doctors begins. The rheumatologist wants to put me on revatio, but the cardiologist says no. So, they will be talking. Also, they found out that besides me being extremely anemic, I am off the charts low on B-12 and folic acid which I will now have to give myself shots of. Hubby is hoping I will become an active tornado, with iron, B-12, and revatio running through my veins! :lol:

Anyway, just catching you up. Thanks for all the support and good feelings...I sure do need them!
Peace,
Karen

#12 debonair susie

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Posted 06 March 2008 - 07:17 AM

I'm glad to read that you now have your port in and that you made it through the novicaine shots :blink:

As for our hubbys... I really believe they help to balance us out, don't you? MOST of the time, mine is from the school... if ya just stick your head in the sand... this will all go away! Wouldn't THAT be nice?! Really though, because he has COPD withasthma component, chronic bronchitis,, as well as prostate cancer, he is fully aware that just isn't possible. For quite some time, he seemed to deny his illnesses, but thankfully, he's become proactive in his better health... the reason being... neither of us can "afford" the stress of the other NOT taking care. Neither of us are a big bundle of energy, so we find it's easy to pace ourselves. BTW... I'm 55 and he's 68, soon to be 69.

Thank you for the update on how you are doing. I hope that the B-12 shots don't take long to take effect and that you begin feeling much better soon, Karen.

Big Hugs for you,
Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#13 peanut

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Posted 06 March 2008 - 01:36 PM

My Vit-B complex shots, which include B12 took 4 shots before I really felt the breakthrough in energy I desperately needed. I took my shots once every 2 weeks. Normal healthy people get them once every month as recommended by the doctor who administers them. They do burn a little, but its worth it.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...