Dad diagnosed October 2011

[KimP]

In October 2011 my dad who was seemingly invincible got sick. He was admitted to hospital for 3 weeks where he was misdiagnosed with everything from TB, Pneumonia & lung cancer. Back home he stopped eating & drinking & we took him back to hospital where we were told he was in end stage renal failure & had WG. Within 12 hours he was on dialysis, having plasma exchange & chemotherapy. His breathing became worse & dialysis was met with complications. He had heparin induced thrombocytopenia, multiple pulmonary emboli, nodules in his lungs & everything they were trying resulted in potentially fatal side effects.

He was discharged with about 20 prescriptions & required to attend the hospital every 2nd day for dialysis. Eventually his kidneys regained some function & dialysis stopped - he was glad to have the Hickman removed but his mobility was barely functional, his swollen legs make walking almost impossible & he considered himself as almost being in a vegetative state.

5 months later he is in heart failure, respiratory failure & his kidneys are functioning at 15%. Dr's have informed us his condition is "formidable" & he is not a candidate for any surgical interventions so they try keeping him comfortable. If that isn't enough he has had tremors in his hands since his first hospital admission which are getting worse & Dr's suspect he may be having numerous little bleeds in his brain.

My dad who has always been so proud, strong & healthy suffers every minute of every day. I read your posts to him & we have a giggle as he is always telling Dr's they are using him as a guinea pig. I think he takes some comfort in knowing he isn't alone & others are experiencing this awful disease although he has expressed a desire to hear from people who have heart conditions on top of the WG. I appreciate WG does not define my dad but this disease was the beginning of the end for him. We try to stay positive but it is difficult. People ask if there is light at the end of the tunnel & sadly the light is that he dies peacefully.

Since the day he 1st began complaining of being ill, it has been a hard road. With all of medical sciences advances it seems unheard of for there to be so little knowledge & understanding of this disease. I get angry, I cry & get so frustrated for my dad. I have no recollections of him ever really being ill & to become so ill in a matter of weeks is hard for him. No gradual decline in function & mobility gone almost overnight. At the beginning Drs advised us WG needed to be diagnosed early for good prognosis & dad was diagnosed at end stage - what does that even mean? WG started on his kidneys, moved into hisn lungs & then his sinuses. Did we miss symptoms earlier on?

He has had bad days, worse days & the occasional ok day. Still, who knows perhaps he will surprise us all once again & make a miraculous recovery... He hasn't behaved/responded as expected to date so perhaps that will work in his favour lol

My heart goes out to everyone with WG & their family & friends. My thanks to you all for your stories, it has offered support to my family by just being available...

[annekat]

Thanks for sharing your dad's story, Kim. I'm truly sorry he has it so bad with WG. Some of us are lucky enough to have less severe cases (so far). Others have been through very dire circumstances and gotten better. I pray that your dad does indeed surprise you and rally.

[KimP]

Thanks Anne... May your WG remain less severe...

[renidrag]

It is an awful disease, no rhyme or reason. For any one of us on this forum there is a different story with different series of events that engaged us to this diagnosis. My heart goes out to your Dad and you! I know there are folks on this site that have spent weeks in ICU under dire circumstances and have rebounded in time. Take heart.
Dale

[RudiK]

Hello Kim, thank you for sharing your dad's story. WG iss an ugly, ugly illness and the fact that few docs know anything about it makes it worse. I consider myself a very lucky guy in that it took"only" a few months before I found a doc who recognized it started treatment before it got worse. I hope and pray that the docs find the right treatment and that your dad will get better and can enjoy life again.

[Debbie C]

Hi Kim, I too I'm sorry your dad is going thru such a rough time. But if you have faith ,expect miracles. Maybe he should see go to another Dr. and see if they can come up with a different solution. I'll keep your family in my prayers.

[annekat]

Kim, I woke up this morning thinking about you and your dad. I know you asked some questions I can't answer about the kidney complications. There are those on here who know a lot more and I'm sure will be responding. I'm also curious whether the heart failure is due to WG having gotten into the heart, which I hear is rare. My medical knowledge of all this is pretty limited and comes mostly from reading this forum.

I do know it is important to be seen by a Wegener's specialist, or to have your doctors consult with one, and wonder if your dad has this advantage or is simply being treated by regular docs who are doing their best. While I don't have a specialist myself, I should....... but in a severe case such as your dad's, it is especially important! A lot would depend on your location. There is a lot in the archives here about WG specialists and where to find them. The Vasculitis Foundation website is a start. I'm sure people on here will give you advice, if you don't already have a specialist.

[drz]

Sorry to hear about your dad's plight and your sadness. Some of us have survived some pretty severe cases of Wegener's and were headed toward dialysis from kidney failure but lucked out due to good fortune and aggressive treatment. I believe consultation with some experts around the country also contributed to my survival which was very uncertain for awhile.

Wegener's can get into the heart but fortunately that is rare but extremely serious and difficult for treatment when it happens. I don't know of anyone on here (this forum) who has had this happen but maybe there is and can offer you some encouragement. We know the treatment can be difficult and it has risks which unfortunately he has already encountered.

Have your treating doctors consulted with any of the recognized experts listed at Vasculitis Foundation? Sorry to hear about your situation and we only hope that with more publicity diagnosis can come earlier for more people and reduce the number of people who have to share your experience. Hoping things get better for your dad. Keep us posted.

[watersedge]

I get angry, I cry & get so frustrated for my dad. I have no recollections of him ever really being ill & to become so ill in a matter of weeks is hard for him. No gradual decline in function & mobility gone almost overnight.

I am very sorry for what you and your dad must be going through. It is very difficult to accept and understand how rapidly this disease can take over the body, it all happens so fast especially when the kidneys become involved. My dad had pericarditis which is when the fluid filled sacs around the heart become inflammed and this was due to a build up of fluid around the heart from kidney failure, he went from dialysis a couple of times a week to 2 hour sessions everyday to help keep the fluid away from the heart, the inflammation was also putting pressure on his heart to work harder. Is your dad receiving dialysis at the moment? I am not sure if this is what is causing your dad's heart problems but said I would add it in and maybe it might be of some relevance to your queiry about heart involvement.
I understand the anxiety, frustrations and worry you must have at this time, you feel like screaming at somebody to do something to help your dad and can't understand why nodbody is moving or acting fast enough and why they can't in this day and age cure him. I feel for your dad also and how he must be feeling especially going from seldom being sick to deteriorating so rapidly in a couple of weeks, my dad never wanted visitors in hospital except for us, he was so proud and independent also and didn't want neighbours and friends to see him so ill. You worry for him constantly.
I have read a lot of stories on this forum where people were so ill that it looked like they were not going to make it and slowly but surely they turned a corner and started to respond and slowly improve, where there is life there is hope, I wish your dad all the best and hope he turns that corner.

[Al]

Kim, I cannot make things easier for you or your father. Would that it were in my power to reduce your frustrations; it is not. I will try to at least answer some of your immediate questions. Please ask any more that crop up. If I or any of us can provide something like an answer, we will gladly do so.

The term "end stage" usually applies to CKD (Chronic Kidney Disease)--in particular, Stage 5. At this point, it is assumed that kidney function is not going to get much better, and that renal replacement is potentially in order--sometime in the future. For any given patient, this could be days away or decades away. For instance, I am technically at that stage, but I have managed to avoid dialysis, and though my kidneys have essentially no reserve, they have not gotten any worse since the last flare. The swollen legs are, I think, related to poor kidney function: the body doesn't know where to put the water that the kidneys can't keep up with, so it lets gravity take over. It sometimes helps to lie down with feet raised.

It is great that your father has responded to treatment, but it is important to note that the treatment itself can be hard to take. Side effects like trembling are most likely related to the high doses of steroids.

Wegener's is a difficult disease to diagnose, especially as not that many doctors understand it. Delayed diagnoses are very common, even when doctors are looking hard to connect the dots. It is likely that, in your father's case, many symptoms were indeed missed, though it may be hard to assign responsibility. Individual pieces of information, like a cough, or infections that don't heal quickly, may easily be dismissed or chalked up to something far more benign. And all specialists routinely look for the answer within their own areas of expertise (vasculitis is, in most cases, not within their areas of expertise!). Further, most patients do not want to bother the doctor with what seem, individually, to be minor complaints. So the big picture may take a long time to emerge. In the case of kidney damage, there are often no obvious symptoms. Even the accepted markers may be normal, or close to it, until the disease process in full swing--what we call a "flare". And many of these flares may be minor enough that they pass by mostly unnoticed--but the tissue destruction is cumulative. Eventually, though, a major flare forces the issue. (This trajectory is, apparently, what happened to me.)

Now, though, the trick is to continue to be human, in all that it means to be human. Not so easy when you are compromised. Please note, Kim, that I am writing here to both your father and to you. He is a sick man who is now forced to live much differently than he has ever lived; his "home in the universe" is suddenly much smaller. This is a new identity, and a nasty, dramatic change. But it is for you, as well. You had gone for all these years working on the basis of your father's robustness; now you must be the strong one. That is to say, you both have to break a new trail, and without a lot of guidance. (We on the forum will travel on your journey as best we can.) Based on my own experience, I presume to take your father's point of view: One's place in the universe depends on having a purpose. Any purpose at all is not easy for a sick person to find, especially for such a previously strong person. I would recommend to you that you engage your father's imagination. We all have good days and bad days. But I am sure that he has stories that would thrill the rest of the family. Even such a seemingly small thing as to share memories can be vitally important, and truly wonderful. And, for you, knowledge really is power. Learn as much as you can. Again, we will make this trek with you to the best of our abilities.

Please let us know how the journey goes.

Al