Dad was recently diagnosed

[Deb Roy]

Hi, my dad who is 67 was just recently diagnosed in March and has been in the hospital since. He started going down hill in December. December 28th we went to the ER and he had Bells Palsy, the doctors said it was due to his ear infection he had a year ago and that it had come back and went into his sinuses. February he started having difficulty breathing when going upstairs and not feeling well all the time. Mom took him to his primary care who ordered X-rays of his lungs and they thought he had cancer, he had a lung biopsy in February but the results showed no cancer. They sent us to a lung specialist who said that he was going to do another biopsy since his first one was inconclusive. He was scheduled the first week of March but ended up in the ER before that for Blood in Stool and coughing up Blood. He had fallen numerous times from his legs giving out and was sleeping all the time. When we got him to the hospital for his biopsy they postponed it due to the fact that when he got on the table his heart went into A-Fib. We asked why he had spots on his hands and feet and they thought he had a disease on the back of heart valves so they did a scope and his heart was fine. A week later the doctor said they had to do the biopsy to find out what is going on with him since he seemed to get sicker and sicker while there. The lung specialist called in a Rheumatologist who was pretty sure he had WG, he started treating him that day with steroids and cytoxin. The biopsy confirmed WG. He has been in the ICU twice once on a respirator due to his lung collapsing. The doctors held a family meeting last week to inform us that dad is not getting worse but he is not getting better on the meds. He has now been on them for 3 weeks along with a feeding tube, and the chest tube. They said his kidney's are stable but wanted us to be prepared that he may take a turn for the worse. He seems to have such a severe case of this and they are talking months in the hospital. Has anyone gone through this and did the meds start working right away or did it take a while? He was a healthy person before this who has worked all his life and now he cannot even stand. He is on oxygen constantly and cannot eat due to the lesions in his mouth, nose, throat and lungs. thank you all for listening. This is a very hard thing to see a loved one go through and I pray that we start seeing improvement soon.

[Sangye]

Hi Deb Roy, welcome to the group. Your dad needs to be under the care of a Wegener's specialist asap. Are you in the US? If you're close to a major center it may be possible to have him transferred there. If not, he is too unstable to travel to one and can have one consult with his doctors. It's free.

Let us know where he's located and we can go from there.

[NicShaf]

Deb Roy,
I'm very sorry to hear about your father. My WG started in a similar fashion, sinus and lung involvement that got me admitted into the hospital back in December. I was started on Preds, and two weeks later on Cytoxin. The Preds seemed to kick in pretty fast, stabilizing all my symptoms, and the Cytoxin took about 4 weeks to kick in. I was diagnosed early, and didn't have many of the complications you mention above, but I hope this helps you.
You, your Dad and your family are in our thoughts and prayers. I hope he starts improving soon.

[Deb Roy]

thank you for the responses, we live in New Hampshire and at this time he is being treated at the Concord Hospital in Concord New Hampshire.

[Jack]

So sorry to hear about your dad. I agree with Sangye that you urgently need the input from a Wegs specialist. Only he will know the sort of response that can be expected and will also know about alternative drugs that may be more suitable.
I'm sure someone will be along soon with the names you need.

[Sangye]

Deb, you're closest to Boston University. I suggest you speak with your father's docs to ask if he can be safely transferred to Boston University. If not (and it sounds like he can't) ask them to call to consult with one of the BU Wegs specialists asap. They will probably be quite happy to do this, since they realize they're in over their heads. This is a service offered for free by the VF docs (http://www.vasculitisfoundation.org/vasculitismedicalconsultants). Dr Merkel is at BU and is a world-famous Wegs specialist.

MERKEL, PETER A., M.D., M.P.H.
Associate Professor of Medicine
Section of Rheumatology and the Clinical Epidemiology Unit
Director, Vasculitis Center
E5, Boston University School of Medicine
715 Albany Street
Boston, Massachusetts 02118
Phone: 617-414-2501
Fax: 617-414-2510
http://www.bumc.bu.edu/Dept/Home.aspx?DepartmentID=436 (http://rarediseasesnetwork.epi.usf.edu/vcrc/centers/boston.htm)

Time is of the essence. Wegs will not wait, especially when the activity is so severe. Let us know if you need more help.

[vdub]

I think everyone on this forum who has seen a WG specialist will tell you that things got a lot better after the experts got involved. That was certainly the case for me. My normal rhuemy had me on mtx, but told me twice he didn't know if I had WG or not and he didn't do anything to go exploring either. He just put me the mtx and had me do a blood test and check-in every 3 months.

When I went to Salt Lake, the first thing they did was put me through a bunch of tests, not to show that I had WG, but to rule out anything else, which then led to confirmed diagnosis. He then doubled my mtx and has me on blood tests every 2 weeks. I finally had a rheumy who was actively interested in my disease and was treating it.

You really do need to get him to a specialist. Your current doctors will totally understand.

[elephant]

Keep us updated on your dad, we are here for you!

[flana]

Hi Deb, welcome to the forum... Agree with all others... you need to get your Dad under a WG specialist as soon as you safely can. I was very sick in the hospital for about 20 days or so... but I did make it through... I hope your dad makes it through as well... Please make sure you go through the discussion forum for useful information... there is lots...

[Deb Roy]

Update on dad, I spoke with my mom and she was pretty sure that the doctors have consulted with a specialist in Boston. She is going to confirm that. The doctors have lowered his steroids, which is making him moody but who can blame him? He has been in the hospital since March and takes many pills, gets shots daily and cannot stand on his own.
They are bringing in a eyes specialist since his eyesight has not improved, everything is cloudy and he cannot see with his right eye, they said that the steroids can do that to you. The therapists had him sitting on the edge of his bed and having him wash himself, which is hard and painful for his bottom. The lesions on his bottom are not healing and can be extremely painful at times.
The pulmonary doctor is hoping to remove his chest tube by the end of this week if he keeps improving. They have lowered the air every two days and he has done well with that, I am a little nervous due to the fact that everytime they have removed it his lung has collapsed and they have had to put it back in.
He is allowed to eat anything he wants and has tried ice cream and lots of liquids but it is extremely hard cause his throat is very sore with the lesions he has. The inside of his mouth however is looking better and the nurses are trying to get the inside of his nose healed so that he can try to go on the nasal oxygen instead of the mask.
The doctors are now giving him this yellow liquid to drink; there are some issues with his liver due to the meds and this medicine is suppose to help it. I am not sure what it is called and what is the issues with his liver. It is hard when I hear this second hand without seeing a doctor myself.
His white blood count is still low and they are considering another blood transfusion, this will be his 8th since he has been in the hospital.
All and all he is fighting this and trying to keep his spirits up. He has a long road ahead of him and we keep praying he keeps moving in the right direction. It is so hard to understand this disease. He can have such a good day and than be down for days after that.
I would like to thank all of you for the support, advice and prayers you have given to me and my family, and I and my family are keeping everyone in our prayers.

[Sangye]

Gosh, he's really going through the ringer. This is one of the worst cases I have seen. I'm so sorry for how much your dad is suffering, Deb Roy. :sad:

[Mitch]

Deb Roy, I have received sooo much help from these wonderful people. Yes! Things will get worse before they get better for your dad. As they have all said , be sure you find a Wegs specialist. In my case, it happened to be a kidney specialist...surprise! Good luck to you.