HELP I AM A LITTLE SCARED

[vanessa]

HELLO, MY NAME IS VANESSA AND I AM NEW TO ALL OF THIS . I AM 38 YEARS OLD AND I HAVE P.K.D. . I ALSO HAVE JUST BEEN TOLD THAT IT IS TIME FOR ME TO START DIALYSIS. I WENT IN FOR YOUR BASIC VEIN MAPPING AND THE FOUND A BLOOD CLOT IN MY LEFT UPPER ARM AND PUT ME ON LOVENOX APARENTLY I AM IMMUNE TO IT SO NOW THEY HAVE PLACED A PIC LINE IN MY RIGHT UPPER ARM FOR A STRIGHT LINE TO RECIEVE HEPPRIN, THEREFORE NOW I AM GOING TO DO PEROTINEIL DIAYLSIS . I HAVE HAD THE EXAM TO SEE IF I CAN AND WAS APPROVED HOWEVER EVEN THOUGH THE DOCTOR CAN EXPLAIN IT IN HIS WORDS I STILL AM AFRAID. I AM TOLD I WILL HAVE A MACHINE HERE AT HOME I WILL USE AT NIGHT AND THAT I WILL HAVE A BELLY FULL OF GLUCOSE I DONT KNOW ANYONE WHO IS ON OR WHO HAS DONE THIS . COULD SOME ONE TELL ME DOES THE SHUNT HURT? IS IT AS HARD AS THEY SAY TO KEEP CLEAN? COULD SOME ONE TELL ME WHAT TO EXPECT? I AM TO CALL THE HOME DIALYSIS UNIT ON MONDAY AND THE TRANSPLANT CENTER AS WELL MY DR. REFERED ME, THANK YOU FOR YOUR HELP VANESSA

[willowtreewren]

Hi, Vanessa,

It all seems overwhelming at first, especially if you weren't expecting it. My husband had about 15 years warning with his PKD that dialysis was on the horizon so we were pretty well prepared when the time came and I STILL went into denial there for a bit!

We did not do PD, but from what I have read here, it is a fairly gentle form of dialysis that allows you to have quite a bit of freedom.

Take a deep breath and search through the threads here on what others have said about PD.

There is much to learn right here.

And WELCOME! 

Aleta

[HouseOfDialysis]

You have nothing to fear from PD. It sounds quite odd at first, but don't have any hesitations or fear about it. It takes a few months for your body to get used to it, but after that, it's quite smooth provided you follow proper technique.

If you have any questions, the IHD crew is always here!

[galvo]

G'day, Vanessa, and    I'm on haemo so can't help you with PD info. But there is a ton of relevant stuff on this site.

[WishIKnew]

Welcome!

I found worrying about dialysis far worse than the actual experience.  I've done PD for three and a half years.  The first several months there seemed to be a lot to figure out - but my PD nurses were very patient and helpful.  Now, I love the freedom and control PD gives me, and my family is very comfortable with it all, too.  I wish you the best!  Glad you found us!!!!!

[vanessa]

THANK YOU ALL SO VERY MUCH ! I HAVE BEEN READING THE SITE AND THERE IS SO MUCH INFORMATION HERE AND ALOT OF GREAT PEOPLE TOO IT SEEMS!! I HAVE BEEN JUST GOING CRAZY THIS PAST WEEK WITH ALL OF THIS AND TO TOP IT OFF THE DR. HAD ME GO IN FOR VEIN MAPPING AND THEY FOUND A BLOOD CLOT THE SIZE OF A GOLF BALL IN MY LEFT UPPER ARM . PLACED ME ON A DRUG CALLED LOVANOX THAT REQUIRED ME TO GIVE MYSELF SHOTS 2X A DAY COME TO FIND OUT I AM RESISTENT THEREFORE THEY PUT A PIC LINE IN MY RIGHT UPPER ARM FOR HEPRIN TO GO IN FASTER AND PLACED ME ON CUDIMIN , HAD MY INR CHECKED YESTERDAY AND I AM AT AN 11 . MY DOCTOR CALLED PUT ME ON BEDREST AND SAYS I MAY HAVE TO GO IN FOR PLASMA INFUSIONS. I FEEL REALLY OVERWELMED AND ITS JUST MYSELF MY PARTNER AND OUR TWO TEENAGERS I FEEL AS IF I AM BECOMING A BURDEN . DO ANY OF YOU EVER FEEL THAT WAY? SO I GUESS A FISTUALA IS OUT OF THE QUESTION RIGHT NOW. COULD YOU TELL ME IF AND WHAT I NEED TO STORE MY SUPPLIES FOR PD IN? DID ANYONE HAVE A HOME NURSE COME SHECK OUT YOUR HOUSE? I WONT HAVE A NURSE DO TO INSURANCE. THANKS AGAIN EVERYONE FOR BEING SO KIND

[CHeatherS]

Blessings to you dear Vanessa, I hear the fear and frustration in your words. 

I have only been on PD for about a month now.....  I had a lot of doubts and fears beforehand, and that's normal, because it's so much unknown.  Even if you could understand all that there is with your mind, you still have to go through the experiences.  Decide ahead of time, "I can do this" and also that you will spend more time at encouraging yourself than giving in to fear and worry.   Worry really only makes you anxious and doesn't at all help you to understand what you are about to go through. 

I did NOT want to go on dialysis, and was really regretting it.....  one night I woke up with the words "be thankful for dialysis" in my head (where did THAT come from?) so I decided to choose to be thankful for it, and yes, it did take an effort.  But now, I am starting to feel better, and get my health back, as well as hope.  You need that, you need hope and a desire to live. 

Ask a lot of questions of your health care providers, and us here on this forum.  Although I am new here, I am very impressed with the friendly advice all the folks give, and they encouragement. 

You can do this.  It helps to hear other's stories and see that they are doing it..... you can too. 

Blessings!

Heather

[jbeany]

I did home hemo, and had a nurse come check out my place.  They really just want to know if you have a clean space to store and use the equipment.  It doesn't have to be sterile like a hospital, just reasonably clean like any normal household.  It's all about cutting down the infection risk.  I know a lot of people make sure their pets can't come in the room anymore, to cut down on the pet hair floating around.

I haven't done PD, but I'm guessing the storage requirements are similar to home hemo.  You're going to end up with a lot of good-sized boxes of fluid that will take up at least a small closet's worth of space.  I bought a set of storage shelves meant for a garage - it was 6 ft high and had shelves 3 foot wide and 4 foot long.  That stacked up most of my stuff in one corner of my D area.  I also had one of those inexpensive plastic storage towers with drawers in it, like you can get at the big-box stores.  That's a good solution to keeping all the needed tubes and connectors and alcohol wipes, etc.

You can do this, I promise.  There's lots of help on here.  I understand completely about feeling like a burden, but once you settle into a groove, it will get better.

(When you post again, can you please take off the CAPS Lock?  It's hard to read, and it's also commonly used on internet bulletin boards like this to show when someone is "shouting" or "screaming" in their posts.  Thanks!   )

[lmunchkin]

Welcome to IHD. Vanessa, you'll do an awesome job Im sure, and being nervous about the unknown is not only expected, but understandable!  You are going through alot of emotions right now with everything! First, you will be trained by professionals who will guide you through what you need to do.  They will not let you do this if they see that you can't. But Vanessa, you can and you will.  I knew nothing and felt all the things you are going through, BELIEVE ME, but as the caregiver and not the recipient. 

I know of others on this site who are the patient and doing it all themselves.  I admire that in them!  Your family loves you and hopefully they will be there to learn with you!  It is true that with PD, you really have to be careful hooking and unhooking. But your nurses will train you the proper way. My husband started out all night, then he switched to CAPD 4 times a day. He worked full time and found PD a suitable method of dialysis for him.  We did it for almost 5 years till he got a bad case of Peritonitis and could no longer do PD anymore, and went to Hemo. In Center.

Vanessa, the thing is is that you will have to Dialyzes, that is a fact!  Why not give PD a try and if it doesn't work out, then there are other options available to you.  Just don't worry (I know it is easier said than done) yourself over it and know that you are doing the best you know how. I know this is new to you, and know that it was new to this Dummy also.

Let us know and keep us informed! Lot of helpful and knowledgeable people on this site.

[lmunchkin]

PD requires alot more storage than home hemo.  Their boxes are somewhat larger and heavier than say "nxstage" which is what I do now at home. But as Jbeany said, once you get a groove going it will get easier! 

lmunchkin

[vanessa]

thank all of you so much! i am so sorry to have offended you by usin capps locked i never meant to sound as if i was screaming , everyone on here is so kind and in this huge world sometimes i feel so alone and being able to talk to all of you helps so very much. i don't know much about the computer or how people perceive what I'm saying however i am just greatfull to have found all of you and to share in your experience.thank you from the heart Vanessa

[jbeany]

No one was offended, don't worry!  It's a common mistake when people who aren't used to computer bulletin boards first try them.  You'll be navigating around with the best of us soon.

[Poppylicious]

  Vanessa.  I'm so sorry you're having to go through this.  It must be so very overwhelming for you.  But you have come to the perfect place; the folks on here are amazingly supportive and fabulously wonderful ...

 

*huggles*

[aharris2]

...THEY FOUND A BLOOD CLOT THE SIZE OF A GOLF BALL IN MY LEFT UPPER ARM . PLACED ME ON A DRUG CALLED LOVANOX THAT REQUIRED ME TO GIVE MYSELF SHOTS 2X A DAY COME TO FIND OUT I AM RESISTENT THEREFORE THEY PUT A PIC LINE IN MY RIGHT UPPER ARM FOR HEPRIN TO GO IN FASTER AND PLACED ME ON CUDIMIN , HAD MY INR CHECKED YESTERDAY AND I AM AT AN 11 . MY DOCTOR CALLED PUT ME ON BEDREST AND SAYS I MAY HAVE TO GO IN FOR PLASMA INFUSIONS. I FEEL REALLY OVERWELMED AND ITS JUST MYSELF MY PARTNER AND OUR TWO TEENAGERS I FEEL AS IF I AM BECOMING A BURDEN...

Hi Vanessa,

As others have said, having so much come at you so fast is overwhelming, but it will get better. I see it kinda like surfing (not that I've ever done it) - sometimes you are in your glory having the ride of your life, other times that wave is crashing down on you. You will get control and be riding high again.

We too have been through the anticoagulation saga. Lovenox is a nasty injection, a picc line and heparin is gentler. Coumadin has reached its therapeutic level when your INR is between 2 and 4. It requires frequent blood testing to get your dosage/INR stabilized. An INR of 11 is dangerously high. There is a risk of severe bleeding. Perhaps that's why you were put on bedrest - to avoid damaging yourself! Ask your doc why he/she allowed your INR to get so high. Fortunately, coumadin is easily reversed with vitamin K. Plasma infusions? We had to do this but it was because of Lovenox because it's anticoagulation effect is difficult to reverse.

Best of luck with stabilizing the anticoagulation meds and with starting PD.

[RichardMEL]

G'day Vanessa & welcome to IHD!

First of all - big hugs for you. It sounds like you had a bit of a rude introduction to all of this stuff, and so it can be very overwhealming with a lot to take in, mixed with some unknowns and obviously fears about what this means for you, your future, your family etc.

Like some of the others here I never did PD (not considered a good candidate to do it myself) but I do believe it is one of the more convenient ways to get dialysis done which allows you more freedom both time wise (do it at night while you sleep!) and diet wise (don't have to watch the fluids or restrictions so much with regular nightly sessions to clean you out). As someone who had over 4 years in centre hemo dialysis these things are important.

Hopefully we can help you sort the myth and the fear of the unknowns out and help you as you go down this path. Many voices of wisdom and experience are on here and hopefully make things easier for you.

So hang in there, join in, and hopefully things will improve for you!!

RichardMEL, Moderator

[lsamen]

I have been on dialysis (hemo) for 4 years...Doesn't matter at home or in center,it's not fun in any sense of the word.  I was so worried about bleeding out after treatment while driving home I literally invented something to help others.  I know that your access is in your belly, but my AV graft is high on my left arm...when I bled, I bled a lot!  I invented the "Safe~T~Sleeve" vascualar access and fistula cover and pray that it will help others. 
I HATE needles, but will deal with my physical karma as it comes...Best wishes....welcome to the Renal world, the club you DO NOT want to belong to....

[cath-hater]

Welcome Vanessa and glad you found the site. I'm a little confused after reading your posts.  I know that you mentioned about  vein mapping and asked about a shunt, and both relate to hemo-dialysis. But you also ask about PD and the boxes and storage and so on.  If you do PD, you will get a catheter in the belly. As far as I know, that's the only way to do PD. A shunt, fistula or perma-cath are for HD. If you have decided to do HD and a fistula is out of the question for now, you would most likely be given a perma-cath until a fistula is feasible for you. I don't think they will put a PD catheter in you for a temporary situation while they wait for the opportunity of a fistula.

Are you going to do HD or PD?

[vanessa]

I will be doing P.D. however they were doing the vien mapping to place a fistula in as well do to the fact i live in cheyenne 100 miles away from denver where i am being treated . they want me to have both in case of failure in one.

[lmunchkin]

Good for you V!  Ive been wondering if you tried it, sounds like you are on the right track!  Just hang in there!  It will all be so overwhelming at first, but over time, it will be come routine, and you will be a Pro!  Just don't rush into it! Take your time and learn and listen to the nurse who is training you.  You will come through this with Flying Colors!

Thanks for the update, too! And let us know how it is going!

Prayers    for you,

lmunchkin   

[Cordelia]

Welcome here, Vanessa. I can totally understand where you're coming from. I was 38 last year when I went into renal failure. I'm 39 yrs old now. I found out when I had Polycystic Kidney Disease when I was 19 yrs old. It can be pretty overwhelming starting dialysis. If you'd like to chat sometime, feel free to message me. 

I hope you'll feel at home here on the board, everyone is so friendly here