Depressed, Sad and Arguing with my Husband! Help!!

[Lulu]

Lulu, have you ever heard of "Gradual Desensitization"? You work with someone fully trained in the technique (usually a psychologist or psychiatrist), and they begin with the closest representation of your fear that you can comfortably handle, such as simply talking about it, or maybe showing you a child's toy syringe. Gradually, you work up to a more realistic representation, like a picture of a real needle, until you can eventually hold a real needle yourself with no anxiety. I realize it doesn't help with the work-up for the transplant, as it can be a very long process, but it would certainly make maintaining that transplant much more bearable.

I have heard of that. It kinda scares me. I started looking for a psychiatrist who does this kind of work in the Palm Beach, FL area. Any idea where to find somone who does that kind of work?

What do think about me haveing a premanent catheter in for blood draws and i.v.'s? I know I need to start the transplant work-up, but this needle trauma is really holding me back. I just pushed back my work-up dates from Oct29 to Dec 10 to try to buy more time to work on the needle phobia.

[angela515]

Is your transplant team ok with you have a permanent lint in for IVs and so forth? You have to have blood drawn after a transplant also, so I wonder what they will say  about it having it in before and after? Curious.

[Roxy]

Hey Lulu, I just read this thread. How soon is your appointment? Have you figured out what you are going to do yet? It couldn't hurt to ask them about the external chest cath instead of the PD cath, especially since they place a neck catheter in during a transplant anyway ( at least they did at my hospital). Since I already had my chest cath, they used that during my transplant. The main concern with chest catheter's is infection, so they might not be too into the idea. I would still ask though, there have been quite a few people on this site that have had catheter's for a very long time with minimal issues. I hope things are getting better for you. 

[Lulu]

Thanks Roxy and Everyone -
My hubby and I had a long talk with my nephro and came up with two options. I can get a tunneled, cuffed hemo catheter (tesio) OR I can get a PD cath and a central line (like a subclavian). I really don't want to have a shitload of tubes hanging out of me so I am leaning towards the hemo catheter. My nephro is very understanding of my childhood trauma with needles and knows that the more workups I get the more probems I am having. The hemo catheter would be right under my collar bone and I can have hemo through it and my all my blood draws. I would like to know if anyone has any experience with these and if anyone had been able to get home hemo? I found out that if I go to a clinic close to me I will lose my nehro and that it is really hard to get approved by insurace and medicare to do home hemo where a tech comes to the house. Oh, and some great news, my hubby and I have turned the page and are back to being best friends and great partners. I guess all the stress just got the best of us.

[Psim]

Sounds like you've figured out some options -- still many hard decisions coming up, but at least you have folks listening to you, working with you, taking you seriously. Congratulations on working things out with your husband -- with all the other things going on, it must be a relief to be back as a team, supporting each other. Let us know how this next stage goes for you.

[Aldente]

I have a permcath which exits just under the collarbone, like you describe, and have done in-center and home hemo with it.  A problem with these catheters is the risk of infection.  Statistically, I believe the infection rate is about ten percent for in-center patients.  The infection rate drops significantly for home hemo patients.

I'm not sure I understand your concern about insurance and medicare as related to home hemo.  This is a fully covered modality and payment should not be a problem.  However, you mentioned something about a tech coming to the house.  Most of us on home hemo do the treatments with our partner.  I did meet a person who does not have a life partner and she hired someone to be her dialysis partner.  I doubt that her dialysis partner is covered by insurance.  Training prepares you and your partner to do everything that is needed.  The training process takes about three weeks and the staff will make sure you are prepared before sending you out on your own.  When you are at home you are never more than a phone call away from assistance.

[Jannie]

I just read the booklet Medicare sent me, and if you need an aide for home dialysis, you have to pay for it yourself. That's why most aides are spouses or SO's. When I first had kidney failure, I needed epogen shots once a week. My dear hubby learned to give me the injection. He was a medic in the Air Force in Viet Nam during the 1960's.  He said it was good training for assisting me. I could never stick a needle in myself. I fainted once when my dog was having her nails cut and they cut too deep and drew blood.

[Aldente]

If anyone ever suggested that I give myself a shot it would have taken a week for me to stop laughing.  I too used to pass out at the sight of blood...especially mine.  I couldn't even handle the antiseptic aroma of a hospital and hated visiting people there.

Then we had children.  Cuts, scrapes, accidents, emergency rooms, blood, needles etc. all came with the territory.  I still was not crazy about blood but I learned to deal with it as best I could.

Last year I needed epogen and the folks at the dialysis center said I could come in and they would give me the shots or I could learn to do it myself.  I would have to travel to the dialysis center three times a week for a shot that would take less than one minute.  Teach me I said.  What I once thought was impossible was now a new adventure.  I needed three injections of epogen so the nurse gave me the first injection and showed me each step.  I didn't feel a thing.  The needle was so small there was no sensation.  BUT...my mind kept telling me that shots are supposed to hurt.  I prepared myself and inserted the second needle as I waited for the sting.  Nothing. No sting. No pain. No nothing.  The same with the third injection. I have to laugh at myself because even today when I give myself an epogen injection I continue to anticipate the sting but it still doesn't come.

For me it came down to "ya gotta do what ya gotta do."  I'm sure that doesn't work for everyone.

[keefer51]

I know this reply is late but i just had to say something. I know how you feel i really do. When i was young with kidney disease i was held down so many times for needles and catheters [not the ones in the chest either!] I vowed they would never hurt me again. I guess if i would been by myself i would have been dead by now. During my adulthood there were times again i had a blood test or IV and i would tense up and my mind would feel like it would explode. What they don't understand is that the whole scene stays with me. I don't know if the needle it self bothers me or if the person doing it does. When i was on dialysis the first time i refused any fistulas. I went through around seven catheters before my transplant. When i awoke both of my fears were present a catheter for urine and a couple of needles in my wrist. I know this is long but there is a point. I now have a fistula and i have to admit at first the needles hurt but with the Emula cream and a few accurate techs i don't think that much about it anymore. I knew most of my fears were over when i had to go in for what ever the reason and they stuck a IV in. I held my breath and waited for the stick and didn't feel a thing. I guess you could say i was cured. I did it all myself. I didn't let anyone yell at me about it. Perhaps some day i will get over the fear of the 'other' thing.

[Romona]

Good Luck at your eval LuLu. I hope you can do well with the whole needle thing. I sometimes have a problem with needles, sometimes I don't. I have run away from nurses and had to be sedated. There are up and downs through this whole process and I wish you well.