And It's About Time There Was Some Support For Cushing's!
I have been reading your posts and bio's for a few weeks and decided it was my turn to come out of the corner!!
First off a little about me....I am 44 yrs old. Married to a wonderful man. We have been married for 14 yrs and together for 22. I own a small daycare and am still actively working. My husband is in retail. He has worked for the same company for 35 yrs. He is 54. He just received a kidney transplant at University of Michigan in 2001. That was a long haul too. the dialysis every other day....his not feeling well, and still working 40+ hours at his job. We didn't have much of a life. So imagine not soon after that whole life altering disease, discovering this.....all a little overwhelming, and also losing my Grandma, my Mother and my Sister all in a matter of 3 months in 2000. Makes ya wonder why these things happen. But they say...."God will not give you more than he thinks you can handle"..... He must think I am built out of bricks. My kids are grown and pretty much on their own right now. My daughter is 23 and going to nursing school. She works in the Emergency Dept as a tech at a local hospital. She loves the hustle and bustle. She lives in her own apartment and doing very well for herself. More than allot of 23 yr olds. My son is 19 and works for United Parcel Service and a local hardware store. Not sure what he wants to do.....but has time to figure that out. He is just enjoying being this age right now.
On to the Cushing's. My story isn't as dramatic as some. I cannot believe the things that some have gone thru. In the spring of this year, 2003,(actually for long time) I was not a model patient. For the past 6 years I had been taking care of my husband who in May of 2001 received a kidney transplant. He is doing great now! Except now the tables are turned. He is taking care of me. I had not been taking my medication as prescribed....was very bad about my diabetes, just did not take care of myself. Went for a check up or prescription refill and the doctor in so many words said....."if you don't change something, you will not be here next year." Started taking all my meds, and was at that time my feet were feeling funny when I walked, my system felt like overload. I couldn't sleep but an hour at a time. It seems my system was going nuts!Feet hurt and tingly, legs do weak, swelling, high blood pressure, feeling of being distant, forgetting why I walked into a room, crying all the time, snappy, PMSing. Got scared when my husband and I took a small romantic getaway in July and my blood pressure was 220/110. Turned out my thyroid which had been under active most of my life, was now OVER ACTIVE. Go figure! I never really had a substantial weight gain only because I have always been heavy. I was running like a chicken with my head cut off. My body wouldn't stop. I would be up at 3 am cleaning or doing laundry. At this point I was taking all my meds, feeling better and going to the doctor on a regular basis to "get back on track" I have a wonderful family physician, who says.."I can't walk the path for you but I can show you the way". In August we did some routine blood work and after seeing me so much decided to do this blood work up for cortisol. He said he noticed I looked Cushie and going over records knew there had to be a reason for what was going on. I am insulin resistant too. Not sure if that is what sparked him, and the moon face. He is not an endocrinologists, but I am so glad for his insight on Cushing's or he wouldn't have diagnosed. He is a fairly new Doctor as our insurance changed. But noother Dr I saw in the past 10 years even mentioned Cushing's. And I was seeing allot over the diabetes andSyndrome X.Anyway, the test came back at 39.( I think normal high end range was 23 )Slightly high I believe. That's when he called me at home in the late evening.....to tell me he suspected I had Cushing's. Well I immediately got on the internet and looked it up. Oh my!!! It was like reading me. I could not believe it. Well this sure explains ALLOT. So the journey begins!!! The worse symptoms are the weakness, the blood pressure, the depression, memory loss and the swelling. I had the CT Scan done and I gained 12 pounds of water in 2 days from the contrast or the effect it had on my kidneys! Also they were having trouble leveling my potassium. Was very low, 2.6. But as of today the swelling is gone now and the BP is under control and the potassium is in normal ranges. I take spironolactone for the water retention, hair growth and it holds potassium in your system. I also am on insulin, glucophage,lisinopril, liptor, lasix, toprol, levoxyl, avapro and lexapro.
He referred me to a Endocrinologist, Dr Jeffrey Sanfield out of St Josephs Mercy in Michigan. I was able to get in Sept 17th which thankfully meant I didn't have to wait too long (originally was scheduled for November, busy man!!!). He ran the dexamethasone tests and a 24 hour urine. I am not good at remembering all my counts but I did the low one then the high one. It didn't suppress as much as he thought it would. My 24 hour urine free cortisol was 429 with the range being 8 - 77. So still unsure which Cushing's, a pituitary or adrenal or ectopic. Did not want to go thru the PetroNasalSampling. I had a MRI done on October 16th and there it was. A 5mm tumor in the pituitary gland. It was kind of a mixed blessing if you can believe that. Means all this going on isn't "my" fault. There is a reason for all this...I am not nuts. The doctor still had to rule out other forms so a CT Scan was done on October 28th for an ectopic tumor, but that was negative. That was a hard waiting game. I think I could breath a bit easier once I got those results. And then looking back over the past almost 10 yrs.....I have had symptoms. I became diabetic, my thyroid got worse, a few years ago, my blood pressure started going whacky. I did gain some weight and am the heaviest I have ever been at 280, I am just 5'. I have the "hump", no menses, excessive hair growth on face, vision changes, asthma, sleep apnea, extreme weakness in legs and arms, moon face, hair loss, dry and brittle too. Oh and the feet pain. Aching joints and my fingers and toes "lock". There is a lot of little things too. Does anyone have this funny feeling on their face like you have a facial mask on....one of those goopy ones...that hardens???
So next chapter is meeting with surgeons on November 7th. Dr Sanfiled referred me to him due to his expertise in this surgery. Dr William Chandler, a wonderful pleasant man, very good bedside manner, talked on my level so I can understand. Explained things, showed me films of pituitary tumor. Also, he asked the head of the Endocrinology Dept., Dr Schteingart, to meet with us too. Surgery is set for December 17th, 2003. Tuesday I had a CT Stealth that I am told they will use for the surgery. I am also taking part in a research program for depression and short term memory loss. If there is something I can do to help others...I am more than glad to partake.
We had some insurance issues to take care of. U of M is an "out of network" hospital and the insurance will only cover 70% of the cost. Well we asked for a variance due to the expertise of Dr Chandler, he is the one we want to do the surgery. Doctors wrote letters saying that if done right with someone as knowledgeable as he is, chances are the long term would be better and less costly for the insurance. Well they approved it and the surgery and related tests will be covered at 100%. PHEW!!!!
I am so glad I found Mary's website......So much support. I also have the support of my family and friends. Everyone is so caring and concerned. And my husband is being a gem.
Surgery is scheduled for December 17th, 2003. And YES!!! I am scared. They are doing the Transnasal surgery, all thru my nasal passage. I think I am scared more for after too.....all the medication changes, talking about CSF leaks, adrenal crisis, hoping I will know the signs so I don't bottom out. But at the same time am excited to possibly getting my life back. The diabetes hopefully will go away, sleep apnea, asthma, weight, all the stuff that goes with Cushing's. Feeling good!!! Feeling normal!!
Anyone having had this same surgery and can shed some light on what to expect when I wake up, please email me.
I am looking forward to being able to talk to people that UNDERSTAND what I am going thru. If anyone wants to chat or email, please feel free to do so.....I know it helps me to talk about it.
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