I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: cariad on September 06, 2012, 05:15:00 AM
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I am having a bit of a meltdown. Looking for advice or direction. My original transplant has been hurting on and off, now mostly on with no real off. I am sitting here in a town no one has heard of with only spotty wifi and a cheap Nokia phone from Gwyn's employer. I don't know if I should go to hospital, what to even request that they do for me if I do. Car is due back in Birmingham before 6PM, supposed to collect kids from school, fill up tank, head over there, take train to meeting spot where Gwyn will pick us up when he is able. We're out £200 or more if I mess this up - I know that's not the primary concern but still, trust me to time it this way. G is not even at regular headquarters today - instead at a remote site an hour away for a big meeting. Spoke to him briefly and he thinks I should go to A&E and email my doctor. (Don't think I can make international calls?)
I know the doctor will tell me to go to hospital, but which one? Not able to get to London in good time - Gwyn suggested Oxford? Oh, the doctor will be so psyched to hear from me: She hasn't had labs in 3 months, she's not reachable by phone, she doesn't even know which hospital to go to and I get to drop everything to try to sort this for her!
Oh, it's a Thursday even. He's probably got a transplant scheduled. Feels like I've been punched in the kidney - any recipients know that feeling? Pain is so difficult to describe. I would put it at a 6-7 on the Likert, maybe a 9 when it's a particularly sharp pulse of it. Anyone? :sos;
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Could it be a kidney infection?
Since my honeymoon hospitalization, my transplant has been more sensitive to infections it seems. I was taking a course of antibiotics once a month it seemed. I tend to have silent UTIs except for a sharp pain in the kidney now. I take a daily cranberry supplement and ramp up the amount when I have a flareup. This is the brand I use: http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=SO-1676
Can you get a urine test done for a UTI? That would be my first guess.
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Do you have a fever?
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cariad, Go to the nearest A & E hospital and let them sort you out.
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My first transplant needed to be removed two months after the first...they thought diverticulitis but nothing, including antibiotics cleared up the pain. I think you need to see the doc but hopefully at a hospital with a decent nephrology dept.
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i would say definitely go to the nearest hospital, its not worth the risk or worrying? what is the town you are in called? there must be one not far away.
hoping everything is ok xxx
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Thanks for the thoughts everyone.
Don't think I have a fever but of course, no thermometer.
Pain did eventually subside just feel nauseous now. Got the car to Birmingham and am back. Lou, I'm in a little village outside Studley called Marlborough Green.
The wifi cannot handle anything that involves heavy graphics - no maps and even simple searches can take forever if the internet connection is being moody. I am hoping that a good night's sleep will be the answer. Gwyn has short Fridays so will have him take me to A&E if things are still bad tomorrow. Thing is, I won't have a biopsy under any circumstances and not sure what else is to be done except bloods. The other woman in the trial went to a local ED outside Chicago and they had to race her to Northwestern by ambulance and the surgeon told her to never, ever trust a garden variety local ER. So I hesitate to go anywhere but a transplant hospital. Not looking forward to telling this story - sick of having to relive my entire medical saga with every doctor visit.
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Not looking forward to telling this story - sick of having to relive my entire medical saga with every doctor visit.
You should write everything down and carry it around with you; you don't have to keep repeating yourself and you also don't forget to tell them anything. Keep it saved on your PC and you can edit it as and when the need arises! ;D
Have PMd you. Hope everything is okay.
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I often choose to go to the local ER for initial pain relief or vomiting relief or whatever. But I call the transplant coordinator before I go. Then she waits for a call from the local ER physician. I tell him to call. Then after I get my initial relief they arrange transport to my transplant hospital. Maybe you can do something like that.
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Dear Cariad please go to the nearest A/E or call them, and ask them for the nearest hospital that does transplants. Then go there to A/E. Not likely they'll do a biopsy straight away. They'll do bloods first I would think.
Good luck, and lots of love Cas (nb I Googled your (sort of) whereabouts, and looks like quite some (possible) big hospitals around that do transplants
:grouphug;
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Hey Carrid, Hope you have been to hospital by now. I understand you want to go somewhere with a renal unit but any big city hospital will have one. I have looked at where you are and Birmingham or Coventry hospital will have one. I know that's a bit of a distance to go, but better safe than sorry. Hoping things are feeling better today xxx
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Gregory is very strategic about when he'll go to hospital and which hospital he'll go to, like you are expressing here. I've often heard him say, I'll sleep, and tomorrow these pains will be gone. Sometimes I don't think that was a good idea, like when he actually had pneumonia. So in this case, I hope you've worked out a way to get access to a good specialist. I liked Jeannea's idea.
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Cariad, I hope you are okay. I would definitely agree with Jeannea and others to get it checked out and don't take any chances with your health.
Anne
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Jenna had pain in native kidneys, then it seemed to move to her transplant. It went away after a couple weeks but she had every lab test plus 2 ultrasounds and there was no indication of a problem. Very confusing. I hope you find good care. It must be so tough after moving! Thinking of you!
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Oh my, I've just now seen this. Cariad, did you go to an ER in a hospital that has a renal unit? Are you OK? What's happening?
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Wow, thanks for all the replies. I'm just going to be upfront about this - no, I did not go to hospital but I did get my blood draw at least. They had never heard of a CBC? That was weird but the people at the hospital lab could not have been nicer, except the actual tech who did the job was rather gruff, although she did warm to me I think. Perhaps it was hearing that I was not just a tourist but someone she would actually have to see regularly that got her to decide to give me a chance. Other than a pretty long wait and the fact that they did not use alcohol to clean my arm before drawing the blood, it was basically just your average blood draw. She did not want to hear about my veins, but she used Old Reliable in my left arm, did remark that it was "pretty hard" when I told her of the massive scarring then hit it on the first attempt which shows great skill or luck, suspect skill in her case. The privacy was actually much more thorough than the US, not that I care much about privacy during a blood draw. I had it done in a private room with only one other tech in the room next door who wanted to tell me all about her sister who went to school for 3 months in America.
About the pains - I've had them most of my life, off and on, those were among the worst but probably not the very worst, don't know. Yes, Nat, I pulled a Gregory with this one and decided that this was not worth sounding the alarms just because of past experience. The pain did subside and I've had flashes of pain since, but nothing quite so awful. I went through and read as much of monrein's story as I could to look for parallels. I am actually surprised this is not more common, since I think unused organs tend to shrink away and the smaller they get the more prone they are to being overwhelmed by infection or other nonsense. I am also getting chest pains again which are a tad more alarming but anytime I've mentioned heart concerns they test me to within an inch of my sanity and then find nothing.
Poppy sent me a PM (thanks Poppy!) and suggested it could be stress and I think that's probably the answer. Stress has been piling on this past month, and while I always believed I was not especially sensitive to stress, shingles and eczema have proven me entirely wrong on that. Poppy also gave me some very valuable NHS phone numbers which I will copy into my mobile (once I get one - that's another issue).Then there's my diet - oh, my awful, awful diet! - I had a Thai veg pot from Sainsburys for lunch in an effort to address that hot mess. Both Gwyn and I have ballooned from this ridiculous eating we've been doing and we are both anxious to get to stable housing so we can eat properly once again.