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View Full Version : Not me but brother n law has WGD



12-02-2008, 11:55 AM
MY Brother n law was diagnosed with WGD A few months back. His kideny has been over half damaged. He had spots on his lungs. They put him on a cemoperpy pill 4 times a day and predasone. He has lost a lot of his hair. He has been in the hospital so many times in the last few months, the last time was because he was so weak and he was having black stools. The black stools were from the Iron tablets and the weakness was due to lack of excercise .

He doesn't eat because he says food taste terrible because of the Iron he is taking. He sits all day untill bed time all bundled up in blankets. The house is so hot keeps it at 80 degrease..you can't breathe in it. He lives with Dad this is really caujsing a toll on Dad.He says he wish brother n law and his wife would move back to their house.

Ok now for my quextion. Do any of you experence this type of tiredness, do experence being very cold.I just worry about hime so much thing that maybe the meds are causing most of this.

Mary

Jack
12-02-2008, 04:45 PM
Hi Mary, sorry to hear about your brother-in-law's condition, sounds like they have not got him stable yet or perhaps he is struggling to adjust. It is a life changing diagnosis!
I think that if you read some of the posts on this forum, it will help a lot in understanding the disease. However, symptoms are wide ranging and vary greatly from case to case. Lack of energy is very common! Like many, I often start the day with a list of things to do, but know that I will not be able to complete it unless I adjust my expectations downward. In the early days, I also suffered terribly from feeling cold and wore the thickest of jumpers. I think it could be yet another side effect of medication, they don't seem to list some of them on the box. :rolleyes:

andrew
12-02-2008, 07:04 PM
Agreed, lack of energy is a classic symptom. I don't know where the feeling of being cold is coming from though. Might be a secondary thing like a flu infection??? Is he on any other meds besides thos you've listed? I guess it could be related to a side-effect of Prednisone or the chemo pill (Cyclophosphamide/Cytoxan??) but that's only a guess.

Jack
12-02-2008, 08:30 PM
I believe that both kidney problems and anemia are associated with feeling cold.

andrew
12-02-2008, 08:35 PM
I believe that both kidney problems and anemia are associated with feeling cold.

Ding! Anemia is a side effect of Pred!

12-03-2008, 06:36 AM
well brother n law saw his Dr this morning and this Dr let him have it. Said the biggest problem was his attidute. He could NOT sit and feel sorry for himself. He HAD to get up and walk if he felt faint sit down for a bit and get up again and walk so more. The Dr said part of him being cold is because he is doing nothing but sitting. Dr also said that he had to stay on the iron pills to keep building blood. So hopefully now Brother will start trying to get stronger. I'm happy the Dr gave him this lecture I feel it did Brother good and now have hope he will get better. Yesterday I felt he would not be around much longer.

Now I wanted to share somthing with you. Jim was in Vietnam he was in ther area where they used Agent Orange . now that was some 40 years ago. He has in the last 2 years worked as a Pest Control . He said many of his clients would not let him waer shoes in their homes so he would go in his stocking feet. He would spray insectazide around base boards and such..he started having a lot o pain in his feet. He was diagnosed with Neuropathy.The Dr told him to get any from that kind of work. Than a few months later diagnosed with WGD. He is thinking that the Angent Orange he was expossed with in Vietnam caused his WGD and the pest control insectazides triggered. Will have to wait and see what the VA says about this. Intersing .

Thank you so much for your replies and God bless you all,

Mary

Jack
12-03-2008, 06:59 AM
It is only natural to look for a cause, but I'm afraid that the reason for Wegener's has never been established. It is not even known if it is viral or genetic.

Attitude is indeed one of the key factors in coping with the disease. I make an effort to be positive and find it helps a lot. However, I find it disturbing that I can now fully understand those who just give up.

Sangye
12-03-2008, 07:34 AM
Hi Mary,
(Unfortunately, no one seems to have any real idea about the cause of Wegener's, but the two main theories are infection or toxicity. Personally, I'd put my money on your brother Jim's toxic exposure being the cause.)

It's hard to know what to say about the doctor lecturing him. Sometimes it's true that the person is so stuck in fear, anger, whatever, that they just want to give up. But remember, the drugs he's on also cause depression. Anemia can cause depression and also severe weakness. Even when you're the patient, it can be tough to tell what's causing hopelessness, and how much control you have over it. For months I didn't have computer access, so I had no idea how the drugs were affecting me emotionally. I'd never had a moment of depression in my life.

This diagnosis and treatment is no small thing. Everyone diagnosed with something terrible like Wegs must allow themselves to go thru a grieving period, and like any grief, it comes and goes and it completely unpredictable. Sometimes that doesn't hit right away, because you jump into the treatment without any idea of how difficult it might be. Sometimes the real depression hits several months into everything, when you really see time rolling by, life going on for everyone around you, and you're still sick.

It can be very difficult, even humiliating for some people, to learn how to accept help. No one gives you an instruction booklet on how to do all this when you get sick! Most of us had to go from being completely independent people to relying on others for the smallest things. After months of that, it gets old. Wegs has the additional difficulty of being pretty invisible. Even people I know very well just cannot get their minds around how sick I've been and still am because I don't look so bad. There are many days I'd like to crawl and hide under the covers from sadness, fear, exasperation, exhaustion, anger, grief, you name it.

Also, for me there were MANY times that I told doctors I couldn't do something, and they said I was being lazy, a hypochondriac, etc.... It always turned out to be something actually wrong. My legs and lungs were filled with blood clots, causing crippling leg pain, leg swelling and difficulty breathing. Took 3 weeks to diagnose and no one knows how on earth I survived it. And yet I had two doctors actually yell at me, refuse to call me back, telling me my symptoms were all in my head, and that I was just dwelling on them too much. I also nearly died several times from drug reactions or new bizarre complications, none of which my doctors took seriously. Because I stuck to my guns and continued to "complain," I'm alive to talk about it. Wegs is very difficult to treat--very few doctors who truly have the experience to know what they're doing. They are just human and can certainly miss something.

So remember all that with your brother, okay? Be patient, be kind and be honest with him. Any chance you can get him to read some of the stories on this support group? Might help.

andrew
12-03-2008, 04:57 PM
Excellent post, Sangye!

01-07-2009, 12:30 PM
thank you all so much for your replies. Sangye thank you. You all help me understand this illness.Jim has always looked to me for advise..don't ask me why , but he is like my baby brother.

When we went down to Dad's for Christmas , this is where Brother and his wife are living right now with Dad. When we walked in we were shocked at how much hair he lost . large stripes down his head of no hair. I suggested he shaved his head, after all it is in right now, lots of men shave there heads . I suggested he ask his wife what she thought. He had it shaved that day and looks much better expecially after he gets a bit of sun on it lol, he's pretty pale.After he did it he said he liked it much better.


Well he's back in the hospital, right after Christmas he came down with gasping for air, sore throat , We thought he was coming home yesterday when he started complaning about his chest, they determened that it was from his coughing. So they now have him on morphine. Today they took him to ICU to see if they can get rid of some of the fuid on his lungs. Bless hes heart, hes lost weight again down to 125 lbs.He was right at 175 before he came down with WG.

They have takeN him off the Cemo pills for a while, I hope this makes him feel better.

Can you answer me a question, do any of you have problems from smoke ? like any one smokes around you, the smell of smoke ?

Do any of you work with having this illness ? I really don't know how you could. Brother applied for Social Security Disability and was excepted with in a month. Really was fast for Social Security.

once again thank you so much for your help in understanding of this illness.

Sangye
01-07-2009, 12:40 PM
Hi Mary, so glad to hear from you!

I still can't work, not even part-time, at anything. My energy fluctuates too much and I was just back in the hospital last week. I'm just going day to day all the time.

Smoke, no way. I can't be around it at all. My lungs are like delicate baby lungs, having gone through hemorrhaging, clots, 2 rounds of back-to-back pneumonia and the cytoxan, which caused lung damage. All in 2.5 years. Those little lung cells have been through enough!

Take good care and keep us posted.

andrew
01-07-2009, 12:51 PM
Can you answer me a question, do any of you have problems from smoke ? like any one smokes around you, the smell of smoke ?

Yuppers. I'm constantly around smokers. Used to be one myself back in the day. Totally screws with my chest. I get a heavy chest soon after being in and enclosed space with smokers so I try and avoid it where possible.


Do any of you work with having this illness ? I really don't know how you could. Brother applied for Social Security Disability and was excepted with in a month. Really was fast for Social Security.

Yes, I work, but I am blessed and very, very lucky to be alive much less be able to work. I am hopeless at controlling my stress levels though and am constantly burning my candle at both ends. I eventually crash and HAVE to rest every so often. I could deal with so much more prior to getting sick but I'm not complaining. I'm constantly pleased I can get out of bed in the mornning :D

I was on social security for a few months after diagnosis until I got a job. It was a great help. However, Social Security is so much easier to get here in Australia than most other places I've heard of. That's great the the benefits will be starting so soon!!

crackers
01-07-2009, 01:07 PM
mary i can only tell you about my own experiences. i started with flu like symptoms then i felt so cold even in the hottest room.then i had severe muscle pain and even more severe fatigue.the thing about this disease is no two people have exactly the same symptoms.we all suffer from the same disease but in different ways.please tell jim to hang on in there and come on here whenever he feels like.we are all in the same situation and can help each other because we understand what he is going thru.
john

Jack
01-07-2009, 04:03 PM
Do any of you work with having this illness ? I really don't know how you could.

Yes, I worked as a design engineer throughout my illness even when I was on dialysis (that was a difficult time!). I was lucky enough to have worked for the same major company all my life so had built up plenty of goodwill. I took months at a time off sick on occasions.
I have recently had to retire due to my increasing problems, but have been granted a full pension after having to jump through a lot of hoops!

Luce
01-07-2009, 07:46 PM
Hi

I am looking at returning to work after a 3 month break next week, but only mornings for the first few weeks to make sure I don't burn out too quickly. My lungs and kidneys were both affected but luckily I don't feel particularly ill except for the tiredness which still catches me out now and then. I'm experiencing a few side effects from the drugs such as weight gain and hair loss but these shouldn't stop me working.
I've not lost a day's money yet as I work for the local council who have a policy of paying 6 months full pay to anyone signed off sick by their doctor.

As for smoking I smoked right up until 2 days before I was admitted to hospital. Coughing up several tissues full of blood scared the hell out of me and it hurt to smoke so I stopped and then spent the next 2 weeks in hospital where the last thing I wanted was a cigarette. Since coming out of hospital I'm now quite repulsed by the whole idea of smoking which has upset my partner a little as he still smokes in the same room as me. I feel bad when I complain that the room's so full of smoke it makes me feel sick but I now hate the smell and it makes me sound like one of those awful ex-smokers!
Also I make him eat mints before kissing me :o)

Luce
XxX

Awells
01-11-2009, 10:22 PM
I go into the office 2 days a week...4 to 6 hours...I don't have a set schedule, my company is very understanding....I'm damn good at what I do so they treat me well. I work full time from home otherwise....But, each of us is different, at different levels of WG, different organs effected....mine is all lung & sinus...oh and the skin spots....So for me smoke is a major issue.....even if you don't have WG, smoke is an issue in my opinion.

Try your best to get him into a positive attitude, that is key. find the things that make him happy and want to fight this thing.

I've got 3 kids...my youngest is 10....I want to make it at least until she's 30.....want to see them all get married and have kids of their own.....I also reserve the right to extend my desired length of survival once I start having grand kids and want to see them grow up too.... ;o).

-Adam.