Going nowhere !

[KICKSTART]

I would be interested to know if anyone else has been in this position as i cant be the only one ! For months now my hemoglobin has been 7.1  and up to now i have managed to carry on as normal (well as normal as we are !) but now its hit me like a brick wall and im really feeling the effects, trouble is i have to carry on with everything as i live alone (as most of you know). The problem i have is that i always have high blood pressure , so i cant have any iron or a transfusion , but despite everything i cant get my bp down and no im not new to dialysis. I know my bp has to come down but short of a miracle it isnt happening! I also thought it was considered an emergency for a transfusion pretty much if your hemo gets so low? Im now really struggling with day to day stuff ..like walking around. Has anyone else been in this situation ? What happened? and just how low can your hemoglobin go ?

[Sunny]

I don't know how you manage so well with your hemo as low as that. You've had this problem for a while now. I wish your docs could provide you with some answers. Hang in there.

[jbeany]

Mine was 6.5 before I started epo, but that was years before dialysis, so they weren't doing weekly bloodwork.  I didn't realize they couldn't give iron if you have high bp.  What about the epo?  Doesn't that work for you? Can't they at least give you tiny doses of something?  Even a little bit would help bump you into a level that would keep you functioning, and not mess up the bp that much.  Geez, there has to be a compromise somewhere before you get tired enough to fall asleep standing up.

[G-Ma]

Mine was 6.3 before or when I started dialysis and after 4 transfusions and major iron and EPO I have been ""normal"" for about 6 months now.  Yes, I used to wonder how I could move around and I know you are having that problem.  I hope your Dr. gets this sorted out.

[KICKSTART]

You cant have iron , epo or a transfusion i have been told while you have very high bp . They hate to give transfusions anyway and i was told they are so short term  that they only benefit you for a few days!  Seems like there is no real answer , maybe when i attend clinic on my knees they might think of something !!!

[Rerun]

What is your BP???

 

[KICKSTART]

Dont faint .. it usually comes in around 200 plus/130 ish !!! 

[Rerun]

Damn there are a thousand different BP medications out there and they can't find one?

Well, I guess I remember that is what took my transplanted kidney was high BP that they could not get down.

Maybe get a second opinion with another nephrologist. 

[KICKSTART]

Hi Rerun , we dont get a choice of doctors here really ! But i have to say its not their fault , i think i have tried every bp medication going , trouble is im hyper sensitive to most tablets , and the reaction i get is awful , im literally reduced to a zombie .. ok my bp lowers but i cant live like that ! Anyway my nurse has been today , done bloods to see what my levels are and if still low or lower going to suggest a transfusion , i will know more on monday .

[TiffanyJean]

To start when Richie was first diagnosed he only ha about 1/3rd the amount of blood in his body than he was supposed to - he was missing 2/3rds. he received 2 transfusions right away and felt better immediately. after his last surgery his hemo dropped and they said that if it got down to 7 they would have to give e him a transfusion - with the stipulation that if he felt crappy he would get it; if he felt ok then they would hold off. the doctors told us that the epo takes about 1 week to start working. everybody is different, some people can go for a while with a low hemo.

not sure if this gives any help; hope your docs can figure this out.

TJ

[kristina]

Hallo Kickstart,
 I don't know if this is of any help to you but I am also suffering from drug-intolerance and therefore I am very hypersensitive to tablets of all sorts. A long time ago when the doctors had great difficulty controlling my blood-pressure with one type of antihypertensive I came across one doctor who suggested a cocktail of three antihypertensive tablets. Each tablet was a small dose and it was thought this might be a way to counteract my drug-intolerance. My blood-pressure very quickly came under control and some time later I could come off one of the tablets leaving just two. Being small doses they would not cause intolerant reactions. I don't know whether you have tried such a cocktail yet to control your blood-pressure? I now know that it has become quite a common treatment for certain patients who are intolerant to medicines. Good luck and all the best!

[kristina]

P.S. Your letter "got me thinking" because you say your blood-pressure comes to around 200plus/130 ish,
the doctors you are seeing cannot bring your blood-pressure down
and you are not allowed to see other doctors?
Sounds very similar!
I suffer from end-stage renal failure with MCTD/SLE
and the doctors I saw told me they know nothing about MCTD/SLE with end-stage renal failure
and I am not allowed to choose a doctor to look after my health either. I am stuck!
Could it be by any chance that we are being challenged by the same health-system?
Where are you living?

[KICKSTART]

Hi kristina , thanks for your suggestions , im in the uk. I have done the cocktail of small doses which did help for a little while , but as soon as they try to increase it i start feeling crappy again. Thing is when we go to clinic here we have a 'team' of renal doctors and you could see anyone of them, so usually you see one who makes a plan of what to try, then you go back and find a different doctor sees you, who despite telling them what the last doctor said , has their own ideas!

[kristina]

Ahhhh! I have had and still  have similar experiences,
have been "going around in circles" with ill-health
and no doctor/specialist/GP here could
diagnose what I was suffering from and in
1995 and 2003 I was sent to the Continent
to be diagnosed.
Returning with my diagnosis of MCTD/SLE
did not help me to receive health care either
because every doctor I have been seeing here
admitted they know nothing
about MCTD/SLE. They also failed to notice
how my Creatinine was going up steadily
whilst I battled with an untreated MDTD/SLE flare-up
which still continues to destroy my kidneys.
One doctor here told me, I quote:
"with a rare disease like yours, you are anyone's game."
I have been writing many letters
to receive health-care somewhere else,
still trying, still hoping.
The opportunity to be sent to the Continent
for diagnosis/treatment etc does not exist any longer.
I wonder how many people are
 in a similar situation like us here?
Perhaps we could form a patient-group
together and find a way forward?

[lola]

Otto's BP runs around that # also but he still gets epo3x's a week and Iron( I think 1x a month). Hang in there.

[KICKSTART]

Otto's BP runs around that # also but he still gets epo3x's a week and Iron( I think 1x a month). Hang in there.

Really ? Blimey i was told its dangerous to give epo and iron with a bp so high ! The only time they will give them to me is if my b.p is lower than 100

[rose1999]

Dad also has high BP and gets epo 3x a week plus monthly iron - we're in the UK too.  His BP can be anything from 150 to 190/100+ which isn't as high as yours but still..........

He's also had a number of transfusions and was told that as long as it goes through the machine at dialysis then he will be OK. They do, of course, take blood pressure regularly on dialysis but they run a bag into him in about 20 minutes and he's been fine with it so far. 

I think if they had to give it to him when not on dialysis then they would have to make sure it went in slowly and took his blood pressure every 15 minutes, that's what I remember them doing with my late husband when he needed blood so that his pressure didn't soar (he wasn't a dialysis patient but had cancer which led to a lot of transfusions).  Hope they find somethig to help you soon.

[KICKSTART]

Hi Rose , im waiting for blood test results on monday to see if my hemoglobin has dropped more. This will be my second transfusion if i get one! Yes its done very slowly and monitored , you are right . Trouble is the benefit of a transfusion is very short lived.

[rose1999]

Fingers crossed for those results 

[KICKSTART]

Hi Rose , just got those results in ..and by some sort of miracle my hemoglobin has gone up to 9.1  this is without any treatment at all !!! Only trouble is my other numbers are not so good !

[rose1999]

Glad to hear the hb is up but sorry about the other numbers.  How very strange it all is!  Take care. Rose xx