My name is Jutta. I am 44 years old, married and I have 3 children aged 17, 15 and 12. I am a professional dietician and have had Wegener’s Granulomatosis since the summer of 2008.
This is my story:
I have never really been ill. But in April I suddenly suffered from pain in my ears. There were even times when my right ears seemed deaf. My doctor prescribed some antibiotics. I took them for five days, but things didn’t seem to improve. We changed to another antibiotic, but after five days there was still no improvement at all. The same happened with antibiotic number three.
In the meantime I tried to cope by taking painkillers.
I took Ibuprofen 600 3-4 times a day. The last ten days I suffered additionally from a cold and shortness of breath. I took some anti-allergics on top, which had been prescribed by my doctor. Plus I took some spray for asthma to be able to breathe properly. I felt very bad.
I was already on sick-leave then I urged to being admitted to a hospital that specialized in illnesses of ear/nose/throat.
An x-ray was taken. It proved that my inner ear was inflamed and that the inflammation had already spread into the tissue around my ear, even into the Gehörknöchel. I had to be operated urgently - asap. Well…
The operation was performed on the next day. Everything went well. I was given an infusion with medication for the next six days. I felt well- my shortness of breath was gone, my allergic cold was gone. The deafness on my right ear would last only for a short time at least that is what the doctors told me.
After I left hospital the vicious circle started all over again.
I had to take my antibiotics, my cortisone and my blood-flow-medication as pills, but that caused severe problems. I suffered from unbearable stomach-pains. On a Sunday I went to two emergency wards, but was told twice to just continue taking the pills.
On the following Monday I had another post-operation-care-appointment in the hospital, where I was told again that I should simply continue swallowing the pills should I wish to get rid of the deafness.
Thankfully my doctor offered me the choice of taking my medication as an infusion. Still I felt worse from day to day. I had pains walking and moving, I suffered from diarrhoea and I felt sick all the time. My nose felt like I was having a cold, but I didn’t have a cold. I didn’t feel like eating or drinking anymore I became lethargic. I wasn’t able to look after my children any longer, couldn’t do any housework.
My doctor couldn’t help me, all she suggested was some kind of allergy or burn-out I was told to simply relax and rest.
I was still hoping to get better, I thought „you MUST get better, all this can’t be true.”
But my health didn’t improve; on the contrary, it deteriorated from day to day. I was hardly able to manage the steps in our house, the coughing got worse, at night I had extreme difficulties breathing. 13 days after having left hospital a friend simply took me to hospital.
It was the 4th of June. I don’t remember all too much, I was already confused. Tests showed that my creatinine was at 17 and I was immediately put onto dialysis. By pure chance a nephrologist was at the hospital who from a gut-feeling diagnosed Morbus Wegener. I was being transferred to another hospital in which I was supposed to get a proper diagnosis and a proper treatment the very next day.
I arrived in the hospital on June 5th and stayed for 4 weeks. I got 6 plasmapheresis but unfortunately my kidneys didn’t improve. A biopsy of the kidney resulted in the diagnosis of” 99.9% Wegener”
A shunt was set, but the operation was not successful, the shunt stopped working right after the operation. A new shunt above my elbow was set at the end of July. I am still on dialysis. Chances on my kidneys regenerating ar shrinking. I am on cyclophosphamide, cortisone, antibiotics and some diuretics.
I don’t suffer from any pain, but the chemotherapy has destroyed my taste for sweet and salty food, food tastes very different now. I need to eat food with only little pottassium/phosphate - it doesn’t feel good not to be allowed any fresh vegetables or fresh fruit. Cooking is not my concern, after all I am a professional dietician, but the taste is so unsatisfying.
I lost my physical strength, a walk of about 20 minutes is he utmost I am able to do. On the days of my dialysis I sometimes feel like walking through fog. My right ear is still deaf, my voice sounds tinny and hollow to me. It is very demanding to talk to people.
Sometimes I sit and wonder: What happened to me? I suffer a lot. I was a healthy and active person, now all I am is being sick.
That is what I wrote in November 2008.
By now I know that I will have to stay on dialysis. In the last months I spent ten days in Bad Bramstedt they have a clinic specialized in vasculitis - to get more experts to judge my case. I have lost trust in my nephrologist. What a shame that I didn't come to Bad Bramstedt’s clinic any earlier …
I have been on cyclophosphamide for much too long, the doses of cortisone I had been given had been much too high. I really trust the specialists in Bad Bramstedt and feel really well looked after. Cyclophosphamid has been replaced by “Arava”, cortisone has been slowly tapered to 7 mg.
I feel quite well with this. But thinking of taking up work again….that won’t be possible for a long, long time. Will it ever be possible again? My chronic renal disease is a huge barriere…This is my story.
das ist meine Geschichte....
---- November 2011 News------
Kidney-Transplantation on November 16th 2011
The 15th of November was a normal working day that ended quite beautifully:
My husband and I were accompanied by my friend and her husband for dinner. We hardly drank any alcohol, just a glass of sparkling wine. We had a wonderful evening. We went home at about 10 p.m., I did my dialysis (4 times a day), went to bed and fell asleep.
Shortly past midnight the phone rang.
I waited, hoping somebody else might pick up the receiver, but nobody did. So after the 5th or 6th signal I answered the phone.
“This is Dr. Hummel from the clinic. Is it Jutta I am talking to?”
“ Yes, it is me.”
“ We’ve got a kidney for you. How long will it take you to come here??”
I felt like fainting
My head was empty
I quickly put down whereto I was supposed to go, and then my husband came and asked who had been on the phone.
All of my three children who had been asleep (and who are not really children anymore at 15-18-20) asked: Mum, who was it on the phone?
I said „it was the clinic. There is a chance that I might get a new kidney tonight“.
After that there were lots of hugs and tears.
It was 1 a.m. when we arrived in the clinic.
The clinic seemed empty and silent. We were met by a nurse “Otten“, which made us laugh, because just a short time ago our daughter had called all her friends “Otten”. She even called us “Otten-family” or “Otten-brother”.
We decided to call my new kidney „Otten-kidney“…
Nurse „Otten“ was not too happy, though. He let us know how much he hated to get up for patients in the middle of the night. When I told him that he was paid for it he laughed and answered that the good wages were just the reason he quit his job to the end of the year.
It didn’t change my good humour, though
The doctor came, explained what would happen next and I felt really safe then. At 4 a.m. I sent my husband home, after all the children had to get up at six. I was allowed to take a last shower, empty my bowels and then go to sleep.
Suddenly I went very sad. I realized that somebody else had lost his or her life and that there were other people mourning now.
We were told that the donator had been a woman of 51.
Had she been a mother?
Were her children and her husband mourning her?
How strong must a person be to decide in the very moment of losing a beloved one to make him or her a donor for organs?
I have never met this family but from now one our lives would be connected.
I really managed to fall asleep, somebody woke me up at 7 a.m. Another blood-sample was taken, I got a sleeping-pill. Somebody woke me up in the operation-room. “Jutta, we are going to put the mask on now, then the operation will start.”
”Yes, go ahead…“
At 2 p.m. I was back in the ICU.
I don’t remember all too much from that day, I remember that my family was with me and that I enjoyed it
After the transplantation I got better and better, from day to day. I was allowed home after 12 days.
I cannot tell you how happy I feel that all went well.
My family had decorated our home for Christmas; it was a real treat for me.
I do have to go back to the clinic twice a week for controlling. Right now I cannot sit properly, nor stand or walk. The scar hurts quite a lot. In December I will have to go back for three days for having the catheter removed.
There are two construction-sites in my stomach now but they will probably be gone in two weeks or so and then my new life will begin! I am so happy and so grateful!
I do hope that I will escape Wegener with all the immunosuppressives I am taking I guess he will be too frightened to return.:-)