I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: justcoping on April 09, 2018, 09:29:14 AM
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Hi IHD members.
I'm A, female living Oxfordshire UK. My partner C was diagnosed with Goodpastures Syndrome on 25th Jan, 2 1/2 months ago. Who would have thought life could throw such a living hell at you? It feels like we're in a bad dream, but we're not. There's no waking up.
He has just a tiny bit of kidney function left, nothing useful. The sudden destruction of his kidneys has been a traumatic shock to his body and we've been in to A&E 4 times. Every week there's another crisis when I think he's going to die.
In about 10 months he should be able to have a transplant, but that's a long time to endure this hell.
He has dialysis 3 times a week. The current problem is severe shortness of breath. It's not haemoglobin - his is up to 98, it's not excess fluid on his lungs - I got the doctor down to the dialysis ward to check. It's frightening.
Any suggestions?
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Hi there -- welcome to the site. It sounds like a scary time. Hoping you and C get some answers soon.
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Hi Justcoping welcome to the site
:welcomesign;
I'm sorry to hear about your and your husbands situation. I found some info on Google about Goodpasture Syndrome. It could very likely have to do with the syndrome itself.
http://emedicine.medscape.com/article/240556-overview
Take care, Cas
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Sounds like a nightmare. I wish I knew more about it but I don't. So, I can only welcome you and hope someone here is smarter than I.,
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Welcome to IHD. I'm so sorry. I think the diagnosis is always a shock but when it all happens suddenly...my heart goes out to you. I just googled Good Pasture's Syndrome and find that it is a rare autoimmune disease that attacks the lungs as well as the kidneys. The information on the kidney.org site sounds really hopeful, more so than for most of us. If you do an IHD search you may find others who can offer some support and info. Best of luck.
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:welcomesign;
Hello A, welcome to the site.
I'm afraid I cannot help you with Goodpastures Syndrome, but I'm sure there is at least one other person on this board who either suffers from the syndrome or cares for someone who does, because I was aware of the term when you mentioned it, and the only way I am likely to have heard of Goodpastures Syndrome is if I read about it here. So you should be able to find some advice from them, if you need it.
PS This is a bit cheeky since you have just joined us, but I notice you are located in England, so could I ask that you look at this thread (http://ihatedialysis.com/forum/index.php?topic=34288.0):
http://ihatedialysis.com/forum/index.php?topic=34288.0
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Found this thread (http://ihatedialysis.com/forum/index.php?topic=3152.0) which might be of interest to you (it talks about Goodpastures Syndrome):
http://ihatedialysis.com/forum/index.php?topic=3152.0
Also, here is another new member (http://ihatedialysis.com/forum/index.php?topic=34436.0) who cares for someone with Goodpastures Syndrome:
http://ihatedialysis.com/forum/index.php?topic=34436.0
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Hi there, I hope you and C are doing well.
Giant is okay.
As you asked about haemoglobin, I am actually not aware of that being a problem but it may have been.
He too has heart issues now (yay!) and for a time had to wear a difibulator vest due to these problems though the doctor said it wasn't necessary anymore. But his heart is still a major area of concern, and he takes medicine for his blood pressure still.
He was on prednisone and cyclophosmaide for the first few months after his diagnosis. The prednisone seemed to be worse than the chemo but he was able to taper off it with the quickness after he learned of the havoc it was causing him.
He has no kidney function at all and at present he is not a good candidate for a transplant. The irony here is that he has a perfect match in a living donor, his unaffected and picture of health identical twin.
But it's not entirely impossible. I am hoping he can get off the oxygen assistance, if he does then we are one step closer to transplant possibilities.
You mentioned C has recently been having shortness of breath, I am sorry to hear that. As you have probably already discerned from my mentioning the oxygen, Giant seems to be much more at ease when we have his home oxygen generator going than without, though he is not dependant on it.
Perhaps it was the prednisone keeping lung inflammation at bay, or some other medication I am not sure, but he initially didn't have any shortness of breath. But it's how it is now. God bless him. I can't imagine how hard it has been to go through all this! With the plasma exchanges and dialysis and all of it. But he is a pretty good Giant. I don't know how he takes things so well. He has always had the most optimistic and positive nature, GPS has not diminished this.
I worry a lot because there are so many things going on with him. The heart the breathing the join pain the cramping the weight loss the fatigue - the fatigue is his biggest concern really, he has only glimmers of the energy to be able to do what he had done previously. He rests a lot, sleeps a lot, lies down for the better part of everyday.
So yep it's been about a year exactly. We went to the ER on June 26, 2017 and received his exact diagnosis by the 29th.
Upon admission to the hospital he had some very close calls and bounced from the oncology ward (terminal) to the icu and back several times before being discharged in September. He has had multiple return stretches to the hospital since, some were really serious issues and others turned out to be not as serious.
He has kind of leveled off now. He is doing okay but I wouldn't say he is well. For him now, he is well, great I guess you could say. But for most people, he would probably be considered to be "not doing so well."
Did his body get used to dialysis? Mmm I guess in some aspects. He used to have severe cramps during treatments, he has less now. But now he himself has gotten better accustomed to it, so he feels better. In the beginning he make changes to his diet, and restricted his fluid intake, but not to the extent a dialysis patient is advised to. It took a week or two for him to really understand how his diet and fluid intake were pivotal in how he felt in general and in between sessions and how beneficial his sessions could be.
Though I am sorry that anyone should be diagnosed with antiGBM- i am thankful to be able to communicate with someone else affected by it. I can tell you are all ears to learn about this disease, just as I am. I am hopeful that perhaps we can share useful information with each other.
I saw thar you mentioned C may be getting a transplant, I don't know you but I am smiling ear to ear. (Go figure I started with tears now smiling ear to ear lol) I hope that he can get one and swiftly!
It's scary stuff this goodpastures. C and Giant are lucky to have made it this far.
Good pasture syndrome. What a name, huh? Good pasture my ***
Jk- I wish you and C the best. Feel free to message me anytime.
Lauren
** please note, I'm not going to proofread this (if I did I'd get stuck editing it and never send it) so please pardon the horrendous grammar punctuation typos etc, I am very bad at typing on a phone as it is, and my not so smart phone's autocorrect likes to make me look like a jack*** to boot lol I hope you will be able to understand me though.
Cheerio!
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Hello Lauren and welcome to IHD,
I am very sorry for the terrible trauma you and your husband have gone through so far and I do hope your life somehow gets better soon, hopefully after his transplant. I was surprised to read your estimation of a transplant taking place in about 10 months time? Is the transplant-waiting-time estimated like that because of a possible donation within the family or is the transplant-waiting-time in Oxfordshire 10 months? If so, you obviously live in the right place at the right time... Here in London I know of patients on the transplant-waiting-list and they have been already frustratingly waiting for over 10 years ... I have been on the transplant waiting-list for over 2 and a half years and I have been told to be patient because of my difficult-to-match-categorie set-up.
I send you a hearty welcome and just want to say, that here on IHD you are in the right place with all sort of difficult questions and we shall try our very best (from a patients point of experience) to answer as best as we can.
Meanwhile, welcome again and I send to you and your husband my hearty good-luck-wishes from Kristina. :grouphug;
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Hi Lauren
I've only just logged in and seen your message from June - I note it was a year since your diagnosis, that date - a bitter day for you. Thank you Lauren, wish I'd found you message earlier.
We're doing OK, limping on.
I can't work this site very well - can't see your reply now. I will PM you, though it would be nice to just sit down and have a coffee together.
My partner isn't going to get a transplant at the moment, firstly because he still has high anti-GBM antibody count, 7 months after diagnosis. Secondly because he now has heart failure, though it may improve with the drugs he's on. Thirdly because he's 65; apparently after 65, a transplant, though it improves the quality of life, doesn't extend your life, which it does if you're younger. So - he's not a priority for a transplant. He needs to get fitter, according to his Consultant, but he has no energy and gets a bad back every time he does a bit too much.
Whenever I talk about his situation, it turns into a catalogue of ailments!
That is an irony about your Giant's twin brother. C has a willing brother too, but we don't know if he is a match.
I think we both struggle with diet and fluid restrictions Lauren, as does every one on this forum!
As time goes by, you do get used to things, but the despair gets a grip underneath it all - is it like that for you? I feel a deep unfairness in that I'm well. I do my very best, and also I get complicated feelings. Would be so lovely to talk to you Lauren.
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Hello again, I too am having a hard time understanding how to navigate this forum (though I am very much pleased with my experience, I am just a newb), I saw your DM to me previously, to which Ive replied, but just now saw this reply from you here.
A cup of coffee would be great, even more so with my ability or lack thereof in texting/writing in this medium which leaves much to be desired. I do apologize for the many mistakes, some of which might make my text completely nonsensical. I promise you that I can speak the language aloud quite well!
But enough of that nonsense, I will get right to the heart of the matter.
Yes, I feel that despair. I dont know if its a feeling of unfairness, I think Ive been so well trained socially to understand that life is not fair, and to accept that. But its close to that. I dont think I feel sorry for myself either, I feel sorry for him, you know? One out of a million. That happens to No One! But it happened to him. And its real. His kidneys are really gone. That fast. He is now thrust into life sustaining dialysis, or end of life care.
Okay maybe here is where I start feeling sorry for myself. Because I do feel sorry for myself, I just feel a lot more sorry for him.
He is my Mister. We have a lot of plans ... I have a lot of plans... All of them included us being together.
I am so sorry to hear that your husband was not able to get the transplant. That is very much like the experience of MG (i will use MG for My Giant to abbreviate) and that in itself I am sorry to think of. Because I know just how bad that is. When I first read your introduction post and corresponded with you I had the impression your husband had not been affected by GP (im sure that this is obvious to you, but GP will be how i abbreviate Goodpasture Syndrome, because thats pretty long to type and lets be frank there aint nothing 'GOOD' about it. Goodpasture My Effing *ssture! GRRR) Sorry for the digression. But knowing just how badly GP has hit MG, I thought surely your husband was not as unfortunate. I also knew he was already expecting to get a transplant done, so I knew he must be at least well enough for that.
I am sorry that right now he is not. Neither is MG. He is also at an age of lesser priority, 54. And he was once a smoker, a fact that gets brought up every so often. I am so scared and sad and sorry that he has to go through this. I am sorry he has to be on dialysis.
Its terrible. We get by but you know, its hard to watch someone get completely hammered like this. There was a time when he first got released from the hospital, (in between his returns to the ER and from there to the ICU and oncology ward) that he slept. And only slept. No longer needing to go to the bathroom. He woke sometimes to eat. But he just slept. I thought that this was it, he was dying. He was exausted and then he would die. That it was eminent.
And this is after the many other such near death moments starting with his initial trip to the er and coughing up blood. Which unfortunately is an experience I pretty sure that you are all too familiar with as well.
When he could not get out of bed without pain or being winded and have not the strength to get up... that was so scary for me.
I feel that despair. I am angry. But at what? I dont know. Its all still very hard to wrap my head about it all.
I try to keep myself together emotionally for his sake but I am sure he knows. I am a wreck.
It would be nice to have a cup of coffee. Be a shoulder for one another to cry on if either felt the need to cry.
Lets hope that our Misters get as well as they can. I sure do.
I am glad to have received your replies. I had actually been checking now and again to see if you had written back to me. Not only was your significant other also afflicted with the same rare disease as mine, something about your writing or what you wrote or how you wrote seemed familiar to me, and i got the sense you are reacting to being thrust into GP similar to how I am doing the same..
It was a pleasant surprise to see that you had in fact written. Its nit likely that we will be able to gave a cup of coffee together, but we can still write.
----- To Kristina,
Thank you so much. Thank you. I am new here but this forum has been so helpful to me and your kindness and that if everyone Ive encountered here is vital.
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Hi Lauren, please don’t worry about the strange words predictive text inserts sometimes! I think your Giant was diagnosed 6 months before C. So you’ve endured this 6 months longer than me
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Hi Lauren
I seem to be posting all over the place! I think I can just add to reply to your comment about emotional wreckdom...I cried all reserves dry in the 1st few months. The feelings are no better now, but the fear, of every outcome, has beacons normal.
I wonder if there’s any centre of research or information about Goodpastures? I suppose it’s rarity makes it unlikely.
It does get lonely caring so intensely for someone and not knowing if you’re actually on the right path.
Hope your health is OK Lauren - hope you’re eating some extra potassium and getting some exercise. I find I can now read novels again, a wonderful distraction - do you get time read a bit? Only at night to get to sleep though! I don’t loll on sofas reading during daylight hours - ah, one day!
With very best wishes
Amanda