I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Lulu on October 13, 2007, 08:30:06 PM
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Hi Everybody,
I haven't typed in in a while. I have been overwhelmed with all kinds of feelings. I sent off my transplant application to Mayo Clinic in Jacksonville. I don't know why, but for some reason I thought I would not get accepted, like I wasn't sick enough or something. I know it sounds so stupid.. I just never really thought I would really have to make this decision. I have never wanted to go on dialysis or have a transplant. Well, Mayo Clinic not only accepted me, they called me 2 weeks before thet said my app would be done with the review and scheduled me for my week long tx work-up. I scheduled it and and ever since then I have ran between terrifed, angry, sad, depressed, I have lost all of my self-esteem. I don't know what happened. I have been battling with my husband night and day. We have been getting into screaming matches. He says I am shutting him out.
I don't know if I ever told anyone here at IHD this, and it is embarrasing to admit, especially in front of the hemo patients. But, here it goes, I am terrified of needles. When I was a little girl the nurses used to hold my arms down to forcefully put the i.v.s in for IVPs and hold my arm down to have blood drawn. I have been dealing with doctors and in and out of hospitals for 37 years. In the 70's the nurses were so horrible. I know t is different now, but I don't know how to get my body at it's most primal level to understand that.
I tried to explain to the transplant coordinator that I am afraid of needles, she could have cared less. I have to get 21 vials blood taken that week and I never let anyone touch the center of my arm. I don't know how I am ever going to make it through the whole process, especially post transplant. I really just want to throw in the towel. Live out my days and go to sleep one day and die.
I promised my husband I would not do that. But, I am hating that I made that promise. What do I do when my own personal hell (needles) is what will help keep me alive? How do I make it though? Please help. I feel so lost and so stupid that I can't just conquer this fear. It is so deep rooted. I don't know how to get along with my husband when all I want to do is crawl in a dark, dark cave. Lulu
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I do not have any words of wisdom for you- but heres a hug :grouphug; it sounds like you have alot to live for. :grouphug; have you had any therapy? :grouphug;
is there a doctor in your life that is aware of your feelings? :grouphug;
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I don't know how to help you get over your fear of needles... and never had to get over it myself, so I have no advice there... but I hope and pray you get through this and can find a way to not fight with your husband so it will be a little less stressful for you. :grouphug; :grouphug;
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hey just a thought,might help alleviate your fear of needles,ask the nurses etc,can you have a couple of needles to play around with,touch feel,also some hospitals have a thing comparable to your arm as in needling.
if the pain of the needle is an issue, here in oz, i use emlar cream,also known as lignocaine, put it on about 2 hours prior to treatment,if the nurses hit the exact spot, you don't feel anything.
good luck with it all. :2thumbsup;
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hey just a thought,might help alleviate your fear of needles,ask the nurses etc,can you have a couple of needles to play around with,touch feel,also some hospitals have a thing comparable to your arm as in needling.
if the pain of the needle is an issue, here in oz, i use emlar cream,also known as lignocaine, put it on about 2 hours prior to treatment,if the nurses hit the exact spot, you don't feel anything.
good luck with it all. :2thumbsup;
I agree. Another thing, since they are going to be doing the draw at the Center, you can have them use Lydocain (spelling?). Then, the only thing you'll feel is the first little stick of the Lydocain shot! When I have an IV inserted and even the first stick or two on my Fistula I have them use Lydocain.
I'll be saying a prayer for you, so that you can get through this! :grouphug;
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I am not sure how things work over there but do you have a GP ? You need to talk to someone about councilling over your fear of needles. Its no good putting cream on an arm if your fear is the needle itself. You need to find someone who will listen and possibly hypnotherapy ? The reason you are lashing out at your hubby is because of all these mixed feelings you are having, its easy to lash out at the person you are closest too. Try and explain to him how you feel , your fears and feelings. Tell him its not personal and you dont mean it when you are angry. Hopefully he will understand a bit better then and be more supportive or just not take it to heart when you start. He cant begin to guess whats going on in your head. I hope you can find some help with your phobia soon ..best wishes .
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Lulu wish I could give you some advice but is all I can do is send :cuddle; :grouphug; hang in there.
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this might be extreme but, what about having a port placed in your chest area then all blood draws can take place through that. No needles...Boxman
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As a type 1 diabetic, I've had to give myself more than 40,000 subcutaneous injections in my life. I have also taken fresh cell therapy, a form of treatment used in Europe in which animal cells are injected into the body to reactivate functional deficiencies in the corresponding organs, and for these I had to use a broad gauge needle for direct intramuscular injection on myself. I have also done the same with vitamin E injections, and have given myself vitamin E intra-arterially. While there is a tiny bit of pain sometimes, depending on the type and the location of the needle, the secret of not being bothered by it is to put yourself in a frame of mind ahead of time in which you do not care what the experience feels like, so you can regard your pain as a neutral phenomenon you just happen to notice, like seeing a tree or smelling a flower. Fear of pain has to do with being disposed in advance to regard the experience as something important for you.
You might also consider treatment by a professional hypnotist, who can be quite effective in helping people get over irrational fears.
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I agree with the advice to see your GP. I'd ask for a referral for therapy to someone specializing in phobias and a prescription for anti-anxiety meds. You CAN fix this but you need professional help.
As far as your husband, it's hard to give good advice without being there and knowing you both well. But, based on my experience as a caregiver, I would start by thanking him for his concern, but tell him that you need a little while to concentrate on yourself and the issues you are facing, and when you get to where you can talk about it you'll let him know.
[Some men, who continue to read from this point on, may be offended. It either applies to you, or it doesn't. If it doesn't, then you shouldn't be offended.]
Some people, especially some men, aren't happy if they think that they aren't the most important all consuming thing in you life, and feel threatend and insecure if they notice that you are totally absorbed in something other than them. It's a blow the male ego often doesn't handle well. Besides that, he most likely expected a wife that would be a partner and did not expect this caregiver roll, and likely didn't think it would be so difficult. Most men are not natural nurturers. It's hard for many of them to be understanding, empathetic, tender and caring when their needs are not being met and are not the priority in the relationship. He probably didn't know what it would be like to be in the position to have to take up the slack your health problem has created in your household.
I know it's hard to empathize with him when you are handling difficult issues yourself, but keep in mind that he can never really know what it's like to be in your shoes either. When you get to see the therapist ask first thing about getting a small block of time to include your husband and use most of it to reassure him that he is important to you and an important part of your life. Let him know that you will always need him to be strong and supportive even when you can't open up to him. Tell him that even when you forget to thank him, or even can't thank him, for that loving support, you do appreciate it. Try to remind yourself to tell him at least once a day one reason why you are glad he is in your life, or something about him that made you fall in love with him. Some men seem to need that more than their wives do when things aren't going well. :twocents;
Hope things get better soon, but never forget that he is NOT the patient, YOU are. You have to take care of yourself first. Do the best you can for you. :grouphug; :grouphug; :grouphug;
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Dear Lulu,
I am embarrassed to say how much needles freak me out. In the last 6 years of blood draws and dialysis for Jenna, I never could even look - and it wasn't even MY arm. I get so sick anticipating any needles sticks! I had gestational diabetes with my last 2 pregnancies, and I had to have weekly blood tests. If it weren't for the sake of the babies health I don't think I could have gotten through it! I also freak out when the dentist has to give novocaine in the gum - God I get sick to my stomach and in a panic state. So I think I have an idea of how you may be feeling. If it were me I would do whatever I could to get through it, because as phobic as I am about the needles, it's necessary to do what's needed - for your family and yourself. You will hopefully get a good transplant and not have to have as many more sticks later! The dentist has me take a valium about 30 mins before I see him. It helps a lot. Could you try that? What you are going through is very stressful, and it was just before Jenna began dialysis that they started her on anti-depressants. This may be an option too. Best of luck to you!
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I too have a fear of needles. I've been dialyzing since August 20. I use Emla cream (Lidocaine) and it helps a lot. At the center they told me there's also a numbing/freezing spray. I've seen other patients use it. Every time they insert the needles, I feel a slight sting, like a bee. The good news is the pain quickly disappears. As far as your husband, men like to "solve" all the wife's problems. When I tell my hubby something is worrying me, he feels compelled to fix it. Sometimes I know there's no solution, I just want someone to say "Don't worry. It's going to be okay." Last week, my doctor wrote me a prescription for Zanax, an anti-anxiety medication. I hope it helps!
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I agree with the anxiety medication recommendation. I was put on diazepam for a while and it really helped me with my fear of crowds. I used to have such bad anxiety attacks, I would throw up and/or pass out in crowds. It may sound weird, but it really made me feel braver.
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Good to hear you have been accepted at the Mayo Transplant Center. Maybe you are having a lot of anxiety about the whole issue of having a transplant and all that it entails. The needle issue is also very difficult. Sounds like you are going through some very big changes at this stage in your life and things like this can create a lot of tension between couples. Hang in there, he must love you very much and probably wants to be helpful. However,sometimes men have a difficult time in the listening/talking department. As for the needles, when I have my blood drawn every 4 - 6 weeks I just don't look and always stare in the opposite direction. Some nurses are better than other at sticking the needle and this can make a big difference.Where possible, I try to choose the places with the best nurses. Also, I try very hard to remain completely relaxed during the moments of the blood draw as I have found relaxation eases the pain because the muscles aren't tense. While having the needle work done, relax and think about someplace nice (sort of a meditation technique). Maybe this will help a little with the needle fear.
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I'm so sorry that you have that fear :cuddle;. All the advice here is great. Here's another bit of advice. Make sure they have a top notch tech draw your blood. Call and request them before hand. It makes all the difference in the world when a Pro draws your blood. I have had some really horrible techs draw from me making it a horrible experience.
Good Luck!!
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I agree with everyone, they all have good advice, so hopefully you can feel assured that you are NOT alone. I still hate them, and I do my epogen myself..that's funny, right there, because I dance the needle while whimpering..I don't wanna do this. I do, of course. Definitely get a good technician. IF you can do valium, something like that, all the better. DO tell the transplant coordinator, and if she gets sniffy, bite her ankles. She deserves it. We're with ya, all the way!!! :grouphug;
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I understand exactly where you're coming from with your fear of needles. I have them use the lidocaine injection into each port on my access before placing the 16 gauge needles in. The smaller needles only burn while, if the lidocaine misses, I'm in a world of pain. For those of us who return to Dialysis after an extended kidney transplant, the longer you're on steroids the LOWER your resistance to pain. Some medical personnel are unaware of this and berate me when I'm in pain. Twenty needles a week, no exceptions. It's not easy.
It seems (and I'm just guessing here) that if medical personnel were holding you down while administering needles you'd carry an extra fear of needles into adulthood. That's just insane. And unfair.
My doctor has been hind enough to prescribe Vicodin for nights when the needles are unbearable. I rarely use it, but it's nice to know that it's there if I'm suffering.
If your doctor is willing, I would ask for a catheter instead. Your Dialysis treatment won't be as high as with the fistula, but at least you wouldn't have to suffer each time you go to Dialysis.
Good luck and here's to pain and needle free treatments.
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the longer you're on steroids the LOWER your resistance to pain.
It seems (and I'm just guessing here) that if medical personnel were holding you down while administering needles you'd carry an extra fear of needles into adulthood. That's just insane. And unfair.
Thanks Stacy without an E, I didn't know that about steroids. I have been on them 16 years for Addison's and my pain tolerance seems lower. I don't think the fear is all the pain from the needles. I think it is that the memories that flood back like a slide show. It feels like mental and physical torture to me. And yes, I believe my fear of the needles if from being held down when I was young. It happened more than once. I know it hurts less in the arm but the thought of opening my arm just terrifies me. I know the transplant center is going to need my arm for all the blood.
I really appreciate everyone's advice. As far as the needle trauma/phobia. I have tried hypnosis, counciling, valium, xanax, name it. I still have the fear. My GP is very nice and is working with me to have my blood done in my arm. I know my phebotomist really well and he is in my docs office so it is less stressful. I go every month for bloodwork. I tried a new drug called Lorazepam (Atavan). It has all five benzdiazapene properties. It took 2 mg to get me even relaxed. My phebotomist uses a blood pressure cuff on me because those rubber band tourniquets just do me in. And my doc put a lidoderm patch on my arm it has 5% lidocaine and is like 6"x4" so it numbs my arm. It went ok.
I found a needle phobia sight and it said that by numbing that arm and taking anti-anxiety drugs a person can slowly unlearn their phobia. I know in my mind no one will hold me down and stick needles in me. But, I just get paralyzed with fear when I enter a lab. It's like I turn into a really scared 2 year old. I talked with the transplant coordinator and she could have cared less about my fear of needles!! I know going to a new lab and phebotomist the fear gets a lot worse and basically just starts over. I don't know who else to talk to at the tx center before I go. I am really afraid they will think I am not a compliant patient or something. But, I know once I go there is no way to hide my fear.
Again, thank you for all the input.
I would like to say to stauffenberg who suggested "seeing a hypnotist becuase they help people get over irrational fears," I know from what I have been through as a chilld that my fear is not irrational. It is from deep seated childhood trauma that was repeated over and over again. I have actually seen a hypnotist, cost a lot of money and still have have the fear. I usually find your posts very informative and factual. But, ths time I found it a bit offensive.
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I doubt he was calling you irrational, rather the strict definition of a phobia is an 'irrational fear'
A phobia (from the Greek φόβος "Phobos" meaning Fear), is an irrational, persistent fear of certain situations, objects, activities, or persons. The main symptom of this disorder is the excessive, unreasonable desire to avoid the feared subject. When the fear is beyond one's control, or if the fear is interfering with daily life, then a diagnosis under one of the anxiety disorders can be made. [1]
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I doubt he was calling you irrational, rather the strict definition of a phobia is an 'irrational fear'
A phobia (from the Greek φόβος "Phobos" meaning Fear), is an irrational, persistent fear of certain situations, objects, activities, or persons. The main symptom of this disorder is the excessive, unreasonable desire to avoid the feared subject. When the fear is beyond one's control, or if the fear is interfering with daily life, then a diagnosis under one of the anxiety disorders can be made. [1]
Ok, that makes more sense. Thanks. My apology to stauffenberg. Lulu
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this might be extreme but, what about having a port placed in your chest area then all blood draws can take place through that. No needles...Boxman
Hi Boxman, I was thinking about askng my nephrologist about that. I have my PD cath going in on Nov 5th and was thinking maybe I could have an external chest cath or something. I have had a couple of sub-clavian catheters while in I.C.U. there were amazing because I had no needle sticks or i.v. sticks. I have been trying to find out how long one can stay in place for?
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I also don't like the needles and still don't like them now. I have overcome my fear by taking control and put my own needles in myself. I realize everyone is different and your fear has come from childhood trauma but by taking some control over what is happening to you, you lose some of that fear. It took me 6 months to do but once I started doing my own needles, I've never looked back. When other people do it like nurses etc, they do hurt you though they don't mean to, when I do it, I can gauge the speed and pressure necessary without hurting myself.
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Jeeeez I hate needles...always have...my parents never worried about me doing serious drugs in college (in the late 70's) because they knew there was no way I'd stick myself.
Well, I still don't...my wife does...but I watch all of it except the actual stick...I watch her set it after getting the flash, and sometimes move it around to better the pressure. I decided, since I have a good fistula and had it ballooned twice, that I wasn't going to use the creams or sprays. I just realize that for a very, very small part of my day, there's going to be a little pain. As the days have gone by, the pain is much less - or I've adapted to it somehow. We'll probably explore buttonholing soon, just to allow me to maybe place the needles myself.
I wish I could offer some trick or product to make this better, but I have none. I explored the options and went this direction...sounds like you are exploring yours and you will find a way. My very best thoughts are with you through this.
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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.
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Hypnosis might work, too.
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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.
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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.
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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. :grouphug;
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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.
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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.
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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.
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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.
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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.
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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.
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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. :grouphug;