Trapped in a nightmare

[mysticnight]

Hi guys,
this is my second time posting - pretty much still having major problems with hemo. Been on it for 4 months, with a horrific reaction each time. Now it still is worse each time I go in - 3 times a week. Friday was the last one, and I am now wide awake, shaking and crying about having to go back tomorrow. PTSD?  From the first day I told the doc about the problems, and he tried a few different things, which helped somewhat, but didn't solve it. He left it there, and stopped trying to improve things.  I did the research, asking him and the nurses many questions and was told "It is impossible" and was constantly dismissed.

Last Friday was the worst reaction yet. I "passed out" for 3 hours, woke up as my entire body spasmed, violently shaking, killer headache, as I dislocated my left rib - and I jumped up to stop cramping. They only commented on my nice nap and was told to not stand when I cramp because it affects the tubes, and yelled at me to stop shaking so they can take a proper blood pressure!  I become unable to speak or communicate with my reactions so started giving the nurses a note explaining what happens. They ignore it.

I did my own research and found an allergy to heparin which some nurses will accommodate for. Some argue with me and claim I need my doc to write it up. My GP diagnosed a nervous system and a genetic disorder which includes low blood volume. hemo just makes that worse. I suspect my bad reaction is due to low blood volume, dehydration and chronic low sodium but they won't give me saline - which is the only thing that immediately stops my reaction, sickness' and passing out. My bp is way over 200 and goes higher with more bp meds, which is explained by the genetic disorder. I left several notes for the doc about this, but everything is ignored.

I really don't know what to do anymore. I can't see the doc until late December he is so busy. The nurses care more for their schedules than me. The doc refuses to investigate my reaction or refer me and my family doc cannot refer me because I already have a specialist. This is the only clinic/hospital in the area where all patients go, so I can't just up and go somewhere else. How do I get heard, and get help? It is just too painful to continue this way.

I feel so stupid not being able to help myself and being dismissed like this. Any suggestions?

[sarahmanda]

My first suggestion is to try to talk to your head RN or social worker. They typically are good listeners. Just slip in their office one day either before treatment or maybe on one of your off days. Second, if you don't want them to give you heparin, they can't make you use it. It's your body, your medical treatment, so you have the right to refuse it. If they throw a fit, tell them you'll sign an AMA (against medical advisement) or whatever they need, but they are not to administer any of it to you or you will bring legal action. You don't want to threaten anything legal unless it is a last resort. But they can't do anything to you that you won't allow.

I know it's really rough, but hang in there. The people here are amazing and very supportive. Use this forum to your advantage at any point.

God Bless You!

[Jean]

I have no advice for you, as I don't have the D experience yet. All I can do is wish you well.

[kristina]

I am very sorry for the terrible problems you go through, mysticnight.
It sounds, as if you suffer from drug-intolerance and allergies...
... I am aware that not many doctors wish to acknowledge drug-intolerance: it may create a huge problem for them,
do “to their job” and prescribe medication to patients...

I also suffer very severely from drug-intolerance (I am still pre-dialysis with a very low kidney function, due to flare-ups of Systemic Lupus (SLE)
and Mixed Connective Tissue Disease (MCTD) and other related diseases), which are the cause of “my” drug-intolerance and allergy to many medications...
... These flare-ups are the main reasons for my dedicated fight to remain pre-dialysis for as long as possible...  because I already know
from many other SLE/MCTD-patients in ESRF, that dialysis could assist me and my body to go downhill very quickly by causing many more more SLE/MCTD flare-ups...
 
... Fortunately from December 2014 onwards I shall be put on the transplant list ... which, as I know already,
might cause me other problems in the future with drug-intolerance to the medication being prescribed after the transplant...
.... but I take every day as it comes along and deal with each problem accordingly ... Have you been thinking of a transplant?

... I know from my own experiences, how very hard it can be to find a doctor, a General Practitioner or a nephrologist
who does not shy away from a patient who suffers from drug-intolerance and uncounted allergies,
but I urge you to please try and find a nephrologist who is willing to sympathize with your existing drug-intolerance...
...and I do wish you very good luck!

Best wishes and please take care from Kristina.

[mysticnight]

Thanks everyone for you comments and many suggestions I never thought of.

Kristina, seems we understand each other very well! I have Ehler-Danlos Syndrome (connective tissue disorder), hyperadrenergic POTS and histamine intolerance, along with lots of other food/chemical/drug intolerances. I wish you the best in remaining pre-dialysis as long as possible. Sounds like you have a good deal of knowledge and know how to take care of yourself.

I have discussed a transplant, and most of my family is willing to be a live donor. The catch is I have had Hep C for 23 years and cannot and will not tolerate the standard treatment protocols. The Hep C virus would be too risky with a transplant and the anti-rejection drugs turning off my immune system. New drugs are expected out in 6 months which are much less toxic, so I will be evaluated then. Then come the issues of my drug intolerances. I am willing to try some alternative treatments, but need to get everything else stable first.

[Michael Murphy]

For the last six months I have been being treated without Heperin since I had a bleed in my right eye.  The only change is that they need to periodically flush back with saline the lines since July I have only clotted once without Heperin.  I told both clinics to stop the Heperin since I did not want it, they did my doctor has since confirmed that with a change in my orders.  Dialysis sucks at best and they need to accommodate your needs.  If the center you go to can't or won't deal with this go elsewhere for treatment.  Its your body, Its your life Its your right to control treatment. 

[jeannea]

I really hate to say this because I despise it when people say it to me but here we go. I think that the next time your reaction is that bad you need to go straight to the ER. This is not good for you and should not continue. You need care and you need it soon. You will hopefully be admitted until your condition is under control.

I don't get this crap where you don't see a doc til Dec. Don't you have a doc come to the dialysis center every month? You can try meeting with a nurse or social worker and beg for help. Maybe they can move up your doctor appt. I suspect your notes aren't even getting to the doctor.

The whole thing sounds awful. Get some help right away. If your center won't help then use the ER.

[jeannea]

May I ask where you live? Using GP sounds like England. Just wondering if you're in US or not.

[kristina]

Hello mysticnight,
Perhaps we have gone through similar experiences because of our suffering from a very rare disease...
...  it is quite natural by going through similar experiences, that we understand exactly where each of us is coming from...
I do hope very much that everything connected with your health gets stabilized very soon for a transplant
and that you find understanding doctors who do not shy away from treating your rare disease...
and I also hope, that the new anti-rejection-drugs come along as well and hopefully your body tolerates them... (fingers crossed...)
Beware of alternative treatment please, I have tried it and it did not work for me but it made me to lose quite a bit of money and "a good portion of hope"...
so, please be careful when you try out alternative treatments...
Strangely enough I am in a similar situation like yourself and have to wait until December until I can even think of a transplant because of former cancer-issues...
... a certain time (until December 2014) must have gone by, for doctors to consider the possibility of a transplant in my case...
... so, we are in a similar situation again...I also wonder about my issues with drug-intolerances in the case of a transplant,
because I always had serious problems in the past with drug-intolerances and many uncounted allergies...

Thanks for your kind good wishes, I do try my very best to keep pre-dialysis for as long as possible
and I do hope very much, that you find an understanding nephrologist very soon...
I do send you my best wishes and good luck from Kristina.

[mysticnight]

Hi again. New developments in this saga...
Jeanna, I never realized GP is a British thing!  You're right -- I am in Canada.  I am in a smallish town with hospital and dialysis clinic, shared with the next town. My nephro is the head of the whole thing. I have been in ER for gall bladder attachk and had dialysis there, and the nurse saw i was in pain, but nurses can't to anything, and the doc doesn't see a problem. I also just found out this morning that there is a clinic once a month there! Why don't I, or new patients, get any of this relevant info!

I spoke to the Charge Nurse last night, and had an amazing regular nurse, who stood next to me almost the entire time, documenting every complaint, strange bp reading or symptom. She told me clearly this is not normal and can't go on. The nurses suggest I switch to PD, to avoid the blood shifts. They had the doc call me this morning and I am seeing him on Friday.

But.......the doc doesn't seem to get what my problem is. Everyone has headaches, dizziness and cramping. BP is unusual. He says I don't have Ehler-Danlos because of..whatever. He never heard of POTS and says it can't be blood volume issues, and there is no real testing for it. (Yes there is). Anything I ever suggested could be the problem he denies, but can't suggest anything else. I don't know if he doesn't know or just thinks its in my head. He goes on and on about how good my labs are, as if that is all that matters. Funny though, one very passive-aggressive nurse told the doc I was feeling great the other day - I have had her for 2 weeks. That one I know doesn't like me because I cause too many problems...ha ha and got mad at her when she said my reaction was anxiety.   He wants to check my bp changes in person and talk to the nurses to see if they note any problems.  BP starting out low, and going to over 250 systolic is not a problem?   BP meds cause adrenaline surges and more problems than they fix - but he says there is no way to measure adrenaline? He is full of it.

Doc said my liver could be part of this reaction. I also said I have bad gall bladder issues, which he denied. I told him I was in ER a few weeks ago and they confirmed it. He hesitates to have it removed when it may not be the problem!  I told him I can't eat anything but salad without pain and sickness and he started to take it seriously.  Getting a referral to a new liver specialist out of town. My liver does hurt during dialysis, so maybe?

 My GP wants me in a research hospital 45min away for dialysis and testing, but can't over ride the nephro, which makes no sense at all.
Sorry for my rant, I am so angry and sick. Feeling invisible and dismissed is the worst!
You are all right - I need treatment, answers and a better doc. I just don't know how to get it. And i feel stupid that a fully grown woman can't get a doctor to listen over a life and death issue.

I see nephro on Friday. Any suggestions on what to say or how to say it, to be taken seriously?
thanks so much for all your support.

[kristina]

I had a similar problem to communicate understandably with doctors and I tried very hard without any success..
Then one day, during an appointment, when we were talking without really communicating, I asked if they would permit me to speak about my situation...
They asked me to explain and I told them about my great distress because of my situation, caused by the fact that I suffer from a rare disease,
my trying to understand medically my own medical situation, when I have never studied medicine...
...  and my great distress and fear, that the medics don’t take my situation seriously, whilst I try ever so hard...
... The doctor was a bit shocked about my distress, but he understood...
 He even admitted, that he would perhaps feel similar if he were in my situation and that was the start of a healthy communication  ...
... Whenever I come away from a medical appointment now, I feel that "it was worth it" because I could understand much more medically
 ... and I feel better able to look after myself without any distress and I also feel, that I comprehend how my treatment continues...

Good luck on Friday and best wishes from Kristina.

[jeannea]

I've been in a slightly similar situation lately. I couldn't get an office to let me talk to a nurse or doctor. I needed help badly. I begged on the phone. I know at the end I was crying. That got me nowhere. Unfortunately I had to go the ER and be admitted to see the doctor I needed. I also sent a message through to the chair of that dept telling him how I was treated by his awful staff. That got me some attention. You are not alone in this. So often doctors don't hear us or the in-between people never tell the doctors that we need help.

You should have been told about clinic. I am glad the charge nurse finally listened. It's a start.

For your appt, start making lists. List what has happened, list when if you know when, how long symptoms lasted, etc. Write down all the details you can remember. What you did, what helped, what didn't help. It's too easy to forget in an appt. I would ask him what other doctors he thinks you should see to rule out other problems such as gall bladder. Then you have to give him a chance to absorb all the problems and think. Before you leave, set up a follow-up appt to check on progress and make adjustments. Insist on that.

Good luck!

[mysticnight]

Jeannea and kristina,  thank you both SO much for your support and suggestions. I will do that friday.

[Deanne]

I don't know if this will work for you, but it helped me with endometriosis when I could't find a doctor to take me seriously. I removed all emotion and wrote down each symptom and how they impacted my life. I kept it to the point and unemotional. When it's in writing, they include it in your chart. When it's unemotional, it's harder for them to tell you it's psychological.

I'm sorry for everything you're having to endure without the support of anyone in the medical community.

[mysticnight]

well, had the appt Friday and it was not what I wanted at all. The night before had a fight with a family member who "insisted" it is all in my head and a need for attention, which really screwed me up going in. Doc was focused ONLY on blood pressure and nothing else. I agree bp is a problem and 3 drugs don't touch it - so maybe something else is invovled we need to investigate?  He switched me to two other drugs. ok, i try it.  I finally said "i am very concerned about this reaction I've been having for several months, and it seems I am the only one. It is a real problem...and I forget what else" but he listened then. I went through the symptoms i had that morning, which i documented and the timing of each. Oh, I forgot tho say my reaction that morning was worse than usual, and I arrived at his office one hour later in a complete fog barely able to talk. He didn't seem to see a problem with me. IDIOT!   He did acknowledge my reaction was parasympathetic nervous system, triggered by my thoughts or feelings.

They can't see past anxiety!  I tried to tell him before I was recently diagnosed with those other disorders, one of which IS a nervous system problem, but he won't hear of it, and now lost respect for my family doc for diagnosing it. He wants me to try ativan and benedryl next week to see if that helps. I asked how do we know if this works, and he said he will monitor blood pressure. No a word about the reaction, and he won't discuss further than its "my thoughts". Yes, my thoughts that I will die in about a month if this is not addressed is truly freaking me out.

I have come to realize he has no clue other than anxiety. When the normal doesn't work,you look at the usual. I told him the unusual and he denied it.
I saw my GP and asked for a referral to the teaching/research hospital an hour away. she said they only take referrals from specialists, to which I said he will kill me before he refers me. She agreed to write the referral.  I don't know what else to do, other than next week I am seeing an advocate to help with my disability claim, so maybe he can offer some other suggestions.

thanks for listening guys.

[talker]

well, had the appt Friday and it was not what I wanted at all. The night before had a fight with a family member who "insisted" it is all in my head and a need for attention, which really screwed me up going in. Doc was focused ONLY on blood pressure and nothing else. I agree bp is a problem and 3 drugs don't touch it - so maybe something else is invovled we need to investigate?  He switched me to two other drugs. ok, i try it.  I finally said "i am very concerned about this reaction I've been having for several months, and it seems I am the only one. It is a real problem...and I forget what else" but he listened then. I went through the symptoms i had that morning, which i documented and the timing of each. Oh, I forgot tho say my reaction that morning was worse than usual, and I arrived at his office one hour later in a complete fog barely able to talk. He didn't seem to see a problem with me. IDIOT!   He did acknowledge my reaction was parasympathetic nervous system, triggered by my thoughts or feelings.

They can't see past anxiety!  I tried to tell him before I was recently diagnosed with those other disorders, one of which IS a nervous system problem, but he won't hear of it, and now lost respect for my family doc for diagnosing it. He wants me to try ativan and benedryl next week to see if that helps. I asked how do we know if this works, and he said he will monitor blood pressure. No a word about the reaction, and he won't discuss further than its "my thoughts". Yes, my thoughts that I will die in about a month if this is not addressed is truly freaking me out.

I have come to realize he has no clue other than anxiety. When the normal doesn't work,you look at the usual. I told him the unusual and he denied it.
I saw my GP and asked for a referral to the teaching/research hospital an hour away. she said they only take referrals from specialists, to which I said he will kill me before he refers me. She agreed to write the referral.  I don't know what else to do, other than next week I am seeing an advocate to help with my disability claim, so maybe he can offer some other suggestions.

thanks for listening guys.

Prayer to assist in your finding an answer, placed.
You will notice a betterment of circumstances.

Lets take it a step at a time.
I list a few sources only as 'lookers', and for the links.
Ignore for now the words 'autistic and high-blood-pressure', it's the technique involved that is important. Please, do check them out.

http://www.emofree.com/eft-tutorial/before-begin/eft-tapping-spinoffs.html

http://www.thetalker.org/archives/382/131-talker-on-eft-use-for-an-autistic-child/

http://www.thetalker.org/archives/46/44-eft-to-relieve-high-blood-pressure/

[jeannea]

Unfortunately, I don't know enough about the Canadian health care system. For the US we have a list of patient rights and we can call the ESRD Network to report a lack of care. I have no idea if you have something similar.

My earlier suggestion stands. Next time you have a bad reaction, go as soon as possible to the ER. Ask a family member or friend to be ready for a call from you to drive you. Go to the ER of the hospital that your GP is recommending. There is no reason to putz around waiting for your neph to figure this out. It is your health and you have to demand help. It's unfortunate that we as the sick people have to do all the work.

The ativan and benadryl may help you sleep through dialysis but I have no idea if they will help your problems.