Celebrate how far we have come!
Two years ago I was in sad physical shape and my health was failing fast. I had no idea what was wrong and neither did any of the dozen doctors I had seen looking for answers. I had lost weight, lack of appetite, and was in pain most of the time. My joints hurt so bad I couldn't sit down or get out of a chair without using my arms to help. I had gone to see my diabetic educator who was so concerned about my poor appearance that she got me into see a GP in her clinic right away. They did some lab work and found blood in my urine, increased anemia ( it had been gradually developing which was attributed to my stage two kidney disease from years of diabetes), but nothing that really explained my poor condition at the time. They wouldn't admit me to the hospital but wouldn't let me drive home either so my wife and and a neighbor had to come 30 miles to retrieve me. They did set up some CT scans and ultrasounds for my kidneys to check for cancer and tumors or any problem that might be causing blood in my urine.
I had those tests and some others but things really started going down hill fast so at the end of March I was admitted to the hospital with suspected pneumonia and bladder infection and given treatment and more tests. Soon I lost my hearing in my good ear, the other was seriously impaired from years of infections and had no middle ear from three prior surgeries so I was now functionally deaf. My kidneys were failing fast and then I started coughing up blood. I was dizzy if I tried to stand and needed help to walk. My balance was also gone on right side along with my hearing.
By now they figured out I didn't have pneumonia or bladder infection but still had no clue as to what i did have, only that I wasn't going to last long and was headed for dialysis. I was getting regular transfusions to replace the blood I was losing. They had sent off some blood samples to Mayo looking for answers and then I heard the words of Wegener's Granulomatosis for first time. I had no idea what it was but my nephrologist who told me the tests from Mayo said it was 99% probability that I had it since my ANCA scores were astronomical. He said it was a very nasty , fast moving disease that needed immediate aggressive treatment some place where they knew how to treat this nasty disease.
Three doctors and two family members who were used to manipulating physicians had tried to get me transferred to Mayo for treatment but they refused to accept me since I had just gone on Medicare. My nephrologist then called a friend for second choice of a large University hospital that had experience in treating Wegener's and it was also an hour closer drive and they agreed to take me. I was there a few hours later and a kidney biopsy the next day confirmed the diagnosis of Wegener's disease. The Wicked Granny hit me hard and they said I had an extremely nasty version so they used very aggressive treatment--mega steroids, lots of plasma exchanges, RTX IV to start, then CTX IV, then CTX oral, and lots of antibiotics to treat the infections and to try prevent others, numerous transfusions, and a couple weeks in a drug induced coma (intubation) and umpteen trips in and out of ICU.
At my lowest point all I can remember being able to do was blink so from there it is was either going to get better or end soon. My doctors tell me my recovery was rather miraculous as they slowly regained about 40% of my kidney function, 65% of my lung function, and i was able to transfer to the rehab hospital after several weeks without being on oxygen anymore. I had regained the ability to feed myself and was out of the wheel chair sometimes as I could walk short distances with a walker and was ready to work at at rehab. I worked hard and slowly regained enough strength to pass the test of being able to get my self off the floor from a reclining position with the use of a cane. It took several days to pass this test as I failed the first several times since my muscles were too weak. I also became strong enough to sit in a chair without using my arms or falling into it and to also stand up. Simple tasks but very difficult or impossible when the muscles are too weak.
I failed my first try out at home and returned in a few days but learned I needed a longer period of rehab and lots more work before I could try going home again so I went to a nice nursing home with a 21st century rehab department and amazing array of equipment and spent three months learning to walk further and eventually without the walker but with a cane. When I could walk the 130 feet to the main door and back to my room I was considered well enough to try going home. It was a tough adjustment. At home i had 14 steps with a landing half way and often had to sit and rest on the bench in the foyer when going up and down the stairs. I couldn't make a 65 foot walk to fill the bird feeders without wheezing and stopping to rest. But slowly I got better and now on most days I can walk couple hundred yards at one time even without a cane.
Recently I had surgery to remove my cataracts and just had a BAHA implant surgery that I expect will restore some of my hearing on my deaf ear. It also seems strange to me that my hearing in previously very impaired ear actually got somewhat better when my good ear went deaf. Sort of like the blind developing better hearing as one sense tries to compensate. With the help of vestibular rehab I feel able to walk without assistance and without being bothered by dizziness. I do stagger and wobble a lot but don't fall. I have osteoporosis from the pred meds and and diabetes along with serious neuropathy so falling is a definite risk. The CTX also messed up my bladder function and some meds seem to have wrecked havoc with my endocrine system so I still have those issues to try sort out.
I have had three flares since I left the hospital, two required short hospital stays, and one several weeks of extra meds a year ago.
So life is good. Almost a year since last flare. I am still on the white side of the snow and expect to be on the green side of the grass in a couple months.
I found this quote by Bobbi Mundt, a paraplegic who mentors people with disabilities: "I think one of the things people forget to do is to celebrate, especially those with disabilities. We don't stop and look how far we come."
I have not viewed my self as disabled even though I know I am unable to do the work I used to do. I have a handicap parking card hanging in my car, I have a button that says "Please face me, Hearing impaired." and I now live in an assisted living facility (the independent living part). But most disabled people don't view themselves as disabled, we just have some limitations that require adjustments. Right?
I do identify with the need to celebrate how far i have come from the nadir of this horrible disease. I still get PTSD like symptoms and anxiety when I think about those first few weeks of treatment and marvel at the strength of those of you who have also knocked at death's door and are able to relate the details of your ordeal so clearly and poignantly. I feel overwhelmed when family members tell of their loved one struggling against Wegs and sometimes losing. I think we all feel their loss and empathize with their suffering. It is a horrible disease like a wicked stepmother tormenting innocent people.
I don't think I am overly superstitious but I don't want to wake up my Wicked Granny either so i will post this anniversary note a month before my diagnosis and try slip it past her and her Weg dog. March has been a tough month for me the past couple of years.
After thoughts from writing the above post.
It was very difficult for me to think about the whole initial treatment experience as it brings up many strong and unpleasant feelings. I think writing it was therapeutic, sort of like journaling in public venue where you can get feedback and confirmation. I think my nightmares about having to go through such an unpleasant time are finally starting to decrease but I still get very anxious when i think about being that dependent again probably because I have always been extremely independent and unwilling to accept, or ever ask for help. Nothing like a severe illness or accident to cure that problem and it helped me become a very good patient and to learn patience and to accept help when needed. I still have lots of trouble asking for help though.
I still have mild panic episodes when I think I am having a flare or even when I went back to the same hospital for my BAHA (bone anchored hearing aid) surgery it brought back some very strong unpleasant feelings.
I think one of the most frightening and unpleasant times was the limited memories of the whole intubation experience. Every day they had to lighten the drug dosage till I became partly conscious enough to try breath on my own and they would shut off the breathing machine, and I remember fighting hard for air. My hands were restrained to keep me from pulling out the tubes in my lungs. Not a happy time. Choking and drowning in your own blood might not be "Waterboarding torture" but it must rank pretty close. I really empathize with anyone having breathing problems and rank being able to breath as having the highest importance. You never know how important till you experience a real struggle to do so. Just like everything else that you can't really appreciate it till you lose it.
I know we have discussed near death experiences previously in another thread along with what we learned or gained from Wegs. When i believed or knew I was at the end of my endurance to keep fighting for air, and knew I was going to die soon from exhaustion, my main regret was letting my family down that had been keeping vigil and working so hard to make sure i was getting the best care. The doctors still remember my daughter who spent many night standing guard over me and asking all the numerous doctors the tough questions and making sure they all got on the same page which took numerous lengthy meetings before they could reach a consensus about my treatment. She may have been the reason my treating doctors consulted with the best experts around the country to decide how to treat me. I knew my family was working hard to keep me alive and I felt really bad about disappointing them and letting them down because i just couldn't fight for air any more. i also felt sad about leaving them and a little guilt that i hadn't finished cleaning up the clutter in the garage, but no great fear or lights at the end of the tunnel for me. I regretted the pain and stress my dying would cause them but felt unable to do anymore and knew i would be too exhausted to keep breathing much longer.
Thus i accepted the offer of intubation but had no idea of what that entailed. I remember there seemed to be a sense of urgency to get it done real quick "before it was too late" so the machines took over and I lapsed into unconsciousness and some peaceful rest. When i look at pix of me lying there with numerous tubes hooked up to lots of high tech machines to monitor and take over for all my life functions I really understood how lucky i was to survive and to recover as much as i have. The only sign of life when you are intubated is generally the noise and movement of the machines.
No one dies during intubation, just like no dies in an operating room. Machines keep the body alive while they move you somewhere else where death is allowed. Getting off the machines was a real nightmare and very slow and difficult process. It doesn't always work so you have to be re-intubated again and then they try again later to remove the machines. I did this too. It is a very slow process and I started by opening my eyes and communicating with blinks. Then I got to suck on ice chips and learn to swallow. Then came speech, and after several days I got to eat some real food. Then lots of physical therapy to try restore muscle strength so I could move myself and turn over in bed and eventually breathing without oxygen and then without any machine assistance. Sitting up, standing and walking took much longer.
I can understand why my wife who observed my ordeal said she would never go through what I went through. Two weeks after regaining consciousness I told my daughter, who is my health care director, that I never wanted to go through that again . A month later I said well, if I have to, i guess i could do it again but lets try real hard to avoid it if possible. Then i began planning a big Celebration of Life party to thank all the people who sent well wishes, cards, postings on my Caring Bridge site my wife started to update people on my care and progress. I think this might have been at the time when i was also in the tail end of my pred induced manic period and still rather grandiose. I never had the energy and neither did my family to have a real big bash. It is hard to do a party when your immune system is so wiped out that you have to avoid contact with people. My wife then was also in the middle of hitting her lowest WBC and low blood platelets from her own radioactive isotope Rituxan treatment for lymphoma and had no functioning immune system either. Maybe if she is one of the lucky ones that gets a remission we can both a have a big Celebration of Life Party after I can hear better and it is safe for us to do so.
I try to be vigilant in keeping my appointments, taking my meds, tests, and doctors informed about what I think is happening in my body. I want to stay as healthy as i can as long as possible to allow my family to focus on other things than my latest health crisis and to be able to enjoy watching my grand children grow up too. Like Bobbi Mundt said, I need to Celebrate over how far i have come, I know some others here have done the same journey already and many others who are new here will be celebrating their own recovery journey too in the next year or two. Best wishes for a good journey through your new life. It will not be the same but you may appreciate it and enjoy it more.
What I learned at Mayo today.
I learned some things today from Dr. Specks about GPA. first thing most important to me is that my ANCA scores are continuing their downward trend. I have the most common type ANCA for Wegs and seem to be one of the lucky ones whose ANCA scores track the severity of their disease.
In ICD 11 they are considering classifying these diseases by more objective criteria such as type of ANCA present as this seems more clearly defined and also seems to account for even higher amount of variance than present system. It might not make it any easier to explain to others but will help reduce some of the vagueness and unclear overlap we now see in the diagnostic system.
They must be extending the longitudinal study cause I had to sign new papers today for a ten year agreement. Sure hope I can finish the whole study.:unsure:
The longer you go without a flare the better your chances are of staying in remission. I am working on a year so this was good news for me. Yet....
The disconcerting part was the recommendation to stay on monthly labs for blood and urine since I could have a silent kidney flare and not notice any symptoms till my kidney was gone. It bugs me that this nasty disease can be like a sneaky bed bug and sneak up and get you and you won't even know it until it is too late.
The other good news was I might benefit from pulmonary rehab. It won't fix any of the damage to my kidneys, lungs, neuropathy etc that limit my endurance but it could strengthen my heart and help my heart and lungs work more efficiently so I have more energy and endurance so i will try that next.
My BAHA surgery seems to be healing nicely so only 11 more weeks till I can hear in that ear again. It will be nice to take off my pink pin that says "Please face me--Hearing impaired." I notice today though that only half the nurses at Mayo did, the others talked to the wall and had to repeat what they said.
The Abraham Healthy Living Center has a nice cafeteria for those who are looking for another eating place and the food seemed more the healthy kind, strange, huh?:confused1:
Chronic nasal problems may precede GPA?
Another tidbit I forgot to include was during the discussion it came up that I started having nasal congestion, ear infections, blocked Eustachian tube in childhood which lead to several several ear operations, sinus infections, bronchitis etc. Dr. Specks mention it is likely these infections may have set the stage for the Wegener's disease. So there is another vote for infections being possible cause of Wegener's. I took de-congestion meds for years and also had allergy shots for years to try reduce the nasal congestion and excessive mucous in nose and throat.
Another things I learned was the Weg's damages nasal passages so the little hairs that are suppose to move mucous out and down the nasal passage don't work any more. This leads to the scaling and dried mucous that often contributes to nasal crusting. Thus nasal rinses do two important things--move the mucous out and moisten the inside of the nasal passages to reduce scaling and crusting. The excessive mucous tends to run down the throat and this plus damage to bronchial linings going to lungs and in the lungs contribute to the tickle and dry cough many of us experience at times. This made it easier for me to understand why I should try do the nasal rinses twice a day even when I don't feel congested.
Another quote I like: Knowledge is power! Wisdom is using it to make good decisions!
To me this means we need to learn as much as we can about this dreadful disease so we can make good and wise decisions on how to best take of ourselves and try attain and maintain good health. right? I appreciate all the helpful info I receive here as we pool our knowledge and check out our ignorance. Thanks for all your help, encouragement, and positive affirmations.:hug2::hug1::smile1:
More good news, well sort of??
I think after several months I finally got a good answer about my gynecomastia. It is rare for men but a lot more common than GPA. The explanation for its appearance last year seems to be it is another side effect of my treatment for Wegener's disease. My ratio of testosterone to estrogen is now out of whack due to early testicular failure which apparently was caused by an adverse reaction to the IV Cytoxan meds I had almost two years ago. I remember very vividly that my urinary track locked up and I couldn't empty my bladder. I ended up with a catheter for several (3-4) months and frequent bladder infections and irritation and cramping. I also had enormous swelling in my male organs which seems to have damage the testicles. This was about the same time my feet and legs were also very swollen and I remember having to wear those special inflatable leggings at night and later the tight support stockings so thought all the swelling was somehow connected. I remember being very happy when i could finally get my shoes on my feet after several months of wearing only slippers.
The good news is that the pituitary gland seems to be working fine. My testosterone levels seem to have stabilized (hopefully) in very bottom end of the low normal range. The pain from the breast enlargement seems to have subsided so no additional treatment is recommended at present time. The evaluation does not suggest any presence of either lymphoma or breast cancer but now I get to put that on my must watch list too for regular follow up care. I also have a much better understanding why women don't look forward to routine mammograms So it looks like I can cross off the possibility of any type of breast area surgery or cancer treatment in near future so three down (cataract, BAHA, breast) and one to go to repair the damage from Wegener's and its treatment??? :thumbup::thumbsup:
I still need some plumbing work done as my bladder empties very slowly but I feel extremely lucky not to have had any bladder infections for almost a year. This is next problem I need to sort out and to also work on some pulmonary rehab. My goal is to be able to walk a whole mile at one time in a half hour without falling or stopping for long rest.
My local ENT doctor said my surgery scar looks good. He also cleaned out my mastoid cavity on my ear with hearing aid as wax builds up inside from wearing hearing aid all the time. It feels real good to have that junk out. In 11 weeks i should have my second hearing aid on the BAHA implant and be able to hear in stereo again. :hug3::hug3:
Spring seems to have arrived here early this year. Ice is out on area lakes so no late ice fishing for people this Spring. Trees are budding out and summer birds are here. Time to start looking for setting up some hummingbird feeders. Other residents say there are usually some about this facility.
Re: Celebrate how far we have come!
I just checked and it is over a year since I posted any update on my anniversary status. I also looked over the whole thread which I do at these times. It reminds me clearly of some important things. First, I am very lucky to still be doing as well as I am at present. Two, life is great gift that we need to celebrate while we can. Many great people who help me with supportive encouragement on this forum are now gone and greatly missed. Three, tough times come and go and things often change.
Most of the current readers don't know much about me but eight years ago I was getting ready to move to a rehab hospital after spending weeks in ICU and intubation after surviving a severe bout with the wicked Granny. I then went to nursing home for a few more months of rehab care to work toward a partial return toward a more semi- independent living situation. I have now been in my light assisted living situation for six and half years.
During this time I have had a few operations to try repair some of the damage from Wegs and decades of type 1 diabetes, various infections, a broken ankle from having weak bones, lot of dental work, and some other close calls like being hit by car walking down the side walk last summer. I spent a few anxious hours in ER that time but was greatly relieved to learn I had no broken bones in neck or back or concussion so if I could move enough to get dressed and eat dinner i could try go home. And I did.
I am a high user of medical facilities and services. I often joke that my retirement job was become a full time health care consumer since I help support a dozen doctors at six different clinics. I did decide to drop the Mayo clinic from my list last year since I found out they were not very helpful last year when I developed cellulitis in my scalp near my BAHA site and was advised i would probably need IV antibiotics due to my poor immune system and numerous allergies to various antibiotics. Despite several past assurances they would see me ASAP at Mayo if I needed help they offered no help or even advice. I did later find a good infectious specialist who trained at Mayo at one of my clinics and he is located a lot closer. And he has been very responsive to my needs and concerns about various infections.
I have been able to avoid RTX treatment so far but am reluctant to state it here so clearly since it seems such statements often seem to wake up the wicked Granny or sleeping Weg dog.
I have some waxing and waning of residual symptoms but none serious enough so far to warrant RTX. I do use some Flonase Nasal spray for periods of more nasal bleeding and sometimes a little more extra prednisone meds. My kidney function has been amazingly stable for several years despite active type 1 diabetes. My nephropathy is progressive and keeps getting worse but i can still walk slowly with a wobbling gait for an hour or so if I take some rest breaks. I can still drive and like to go to concerts and lectures I enjoy despite my severe hearing loss. I find my BAHA really improved the quality of my life and with a remote microphone and TV streamer to stream sound directly to my two hearing aids I can usually hear enough to appreciate or understand the gist of what is said.
I spend a lot of time between medical appointments on phone calls trying to get diabetic supplies, setting up various needed appointments, and to get Medicare and my insurances to process claims correctly. That is almost a full time job by itself and usually very frustrating. But it has to be done and I feel fortunate to still have the ability and energy to be able to still do it since most of the other residents in my building can't.
Some of the old regulars on here are gone and we only have their memories. Others improved enough to resume a normal active life again and are busy living it. For the newer readers, remember that with proper treatment, things with Wegs generally get better. For those of us who survived some rougher times, rejoice and celebrate how much better things became. For those currently in a rough patch, remember that better times can come again. Where there is life, there is hope. So celebrate while you can and try to enjoy the moment.
Re: Celebrate how far we have come!
Quote:
Originally Posted by
drz
Where there is life , there is hope. So celebrate while you can.
I totally agree with you, drz!
Wonderfull to see you are doing so good again. Always inspiring to read your posts!
Re: Celebrate how far we have come!
Re: Celebrate how far we have come!
It is now almost nine years ago since I got diagnosed with GPA. My story is detailed in several prior posts in this thread and some others. It was one of our departed members, Al, who convinced me to share it here many years ago.
My situation is much the same as in my last post above. My flucuations in GPA were a bit more serious this year. I had to finally do a pred booster of triple dosage for a week and then taper back down over several weeks to my normal maintenance dosage of 5 mg daily. I had to go part way back up twice before I got back to my usual mainteance dosage. My symptoms were also somewhat different this time too.
Besides the usual heavy fatigue and increased joint pain, I had a lot of brief heavy nose bleeds, eye inflammation, and jaw pain that I thought was one of my frequent dental issues. The dentist was uncertain it was a dental problem but on the second or third visit he ground down a cap on a back tooth to reduce pressure in that area. Then the pain moved around and when it went to my top teeth I figured out it was the sneaky Granny playing tricks on me again. It disappeared when I tripled my pred and came back when I tapered down to my usual dosage. I have only been back on usual mainteance dosage for a few days but it has not returned yet and no nose bleeds either so far and I hope this improvement holds for a while.
One thing i experienced again was the uncertainty and lack of knowledge by most care givers on how to treat the symptoms. Fortunately I was able to finally figure some things out for myself before I got help from my usual GPA treating rheumatologist who has followed me since my initial treatment nine years ago. A local ENT did reassure me that the heavy nose bleeds were not related to any erosion in my septum or developing signs of saddle nose. He did not understand how GPA can cause frequent nosebleeds and and his advice on treatment was wrong so I ignored it. He said not to use the Flonase nasal spray since he said it would make nose bleeds worse but it did help me reduce the nosebleeds but the increased pred meds were most important.
The dentist was baffled by my symptoms but did reassure me that he saw nothing to indicate another root canal was warranted but he was willing to refer me for one if thngs got worse even though he was uncertain would help me. It is interesting to me that part of increasing awareness for GPA to help get an earlier diagnosis is an effort to train more dentists to recognize the symptoms in order to get earlier referrals for treatment. I did my part to raise his awareness. For most of my doctors I am the only GPA patient they see so a lack of familiarity of our disease would be expected and the norm.
Local GP's were uncertain I needed a steroid eye drop or if it was an inflammation or just dry eyes. I was uncertain too but used treatment for all three and the pain and inflammation decreased and vision clarity improved.
Part of the struggle in adjusting to life changes brought on by damages from a serious attack of GPA is learning to accept your "new normal" and adjusting to it. As the serenity prayer states, the serentiy to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
I have found out in the past year since my last post that some things I had given up were possible on a limited basis. I have been taking Tai Chi classes for balance and my balance has actually improved some despite my increasing neuropathy from diabetes which impairs it more each year. I also took a class on balance issues which motivated me to try some thngs i had given up, so I took a ballroom dance class again and was amazed at how well I actually did in the class. Of course I had help from a younger, stronger, physically fit partner with great balance, my Tai Chi, teacher, who wanted to learn to dance, and we did very well. It was really fun to enjoy dancing again but unfortuantely finding another dance partner and opportunity to dance again will be very difficult and unlikely in my area. Ball room dancing seems another thing that has largely disappeared in our area. But they usually have community dance classes each year so I hope to do it again next year if not before.
I also took a fly fishing class and with help of the teacher and guide I was able to actually fly fish again for short periods of time as long as I stayed on shore and had a flat and safe casting area. It was fun to fly fish again and maybe because I had the best guide or the most experience in fly fishing, I caught more fish than the rest of the class put together.
My new BAHA seems even better than my old one so I am enjoying more concerts too even though over all my hearing is also declining with age.
So years later despite advancing age limitations, and on going health issues that reoccur and the new ones that crop up, I feel my quality of life has actually improved. One of the benefits of aging is you learn to enjoy life exeriences more along with more gratitude for things you can still do.
I feel some of the newer members have missed out in not having access and help from many of our older members who are no longer with us but a lot of their wisdodm and advice is still here in older posts. And for those of us who were fortunate enough to interact with them, their memories and advice still live on.
Re: Celebrate how far we have come!
Great news, drz!! I’m convinced that being as active as possible (mentally and physically) is a key to successfully living with wegs. It’s good to learn about fellow weggies who are making their new normal fun and healthy!!
Re: Celebrate how far we have come!
I have yet to put my story up. Just haven't wanted to use my brain that hard to look up dates and such.
I firmly believe in what you guys are talking about. What keeps me going is getting out and seeing people. Since I can't walk outdoors (cold, dust, pollen) I go somewhere every day to walk in doors. I work on keeping upbeat as best I can, having smiles everywhere I go. Lack of energy makes it more difficult, but I'm not going to give up on seeing folks everyday.
Take care!
Re: Celebrate how far we have come!
It was really appreciable that you shared a story, one must be celebrate even small happy moments of life and if its about your health a minor recovery is a a big moment to celebrate. If there's a life, there's a World !!
Re: Celebrate how far we have come!
Last week, I went to Disney World. I rented a scooter for myself so that I could keep up with the family. I blew my diet. Now I'm tired but happy.