Please pray for my wife......update

[chinookin]

If you have seen the "what kind of friend are you" thread, then you know we have been waiting for blood test results. 2nd, please forgive the length of this, I just need to get rid of some of this adrenaline and worry, well here it goes. We got a call yesterday asking us to come in for the results of the test. When I asked for them, the nurse or receptionist said "I don't have the results in front of me and the dr. wants to go over your medication or treatment options". Now, I'm sorry, but I am not a stupid person, I have had so many surgeries since '07 and a major heart attack in '08, and X-rays upon X-Rays, MRI's, CT scans Flouroscopes, Ultrasounds for DVT's, been through a mis-diagnosis for bacterial meningitis for my wife and her ct's, mri's, endoscomies, colonoscopies, ultra sounds, and cervical cancer, radical hystorectomy @28, and the only time we haven't been given results over the phone is when my wife's mother came over to central Oregon to go to the Dr. as she refused to go to the dr's in Seaside any more (they tried on 3 different occasions to prescribe her medications that not only could have, but according to the pharmacist would have had fatal consequences). But I digress, the only other time that info would not be given on the phone was when she came over to go to our dr. and found out she had stage 4 small cell lung cancer. Needless to say, neither of us slept well last night. A little history here: I was in a bad car wreck that left me disabled, I have 4 cadaver ligaments in my left(dominant) hand with 8 micro staples, fractured C-5 vertebrea that they fused together with C-6, so there is a plate and 2 screws, Shattered pelvis as my femur went through the pelvis and shattered it in 7 pieces, when they found me my foot was stuck underneath my armpit, so there are another 4 cadaver ligements 2 screws aand a plug, 2 plates and 9 screws held my pelvis together until it would heal enough to replace my hip, 3 Deep vein thrombosis clots and 7 superficial clots, and had a major heart attack two weeks before my hip replacement was supposed to happen, with about 15-20% damage to my heart, so I also got a stent put in my right coronary artery. My wife had endometriosis and had 3 laproscope surgeries in our first 3 years together, along with bad pap smears and pre cancerous cells removed, also in the first three years we were together. We were trying to have a baby, but time was against us and her gynocologist suggested a hysterectomy, but there were other options if we still wanted to try for a baby, as the cells were pre cancerous, not cancer, so he made her come in every 3 months to have pap smears, the first time they did anything, they froze a section of her cervix, the second time they clipped part of her cervix out, the third time they did a cervical cone, (and removed 1/3 of her cervix) and told us it was against his better judgement but he saw how bad she wanted a baby, and then made her come in once a month. The day before Christmas eve of our 4th year together we got a call to come in that day if possible as things have changed. I went with her and when he did his thing, he shook his head and asked me to look. The first thing I thought was ouch, the tools of his trade looked like some sort of 14th century torture devices. He asked me what I saw and it looked like kind of a yellowish spiderweb where the pigment of her insides had changed color. When I told him what I saw, he said correct, you are looking at the beginnings of cancer, and she was set up for a radical hysterectomy for the day after Christmas. She was only like 28 yrs old. Boy did that Christmas suck. But after she healed she said she didn't realize exactly how much pain she had been in, and was afraid I would leave her to find somebody to have a baby with. I felt awful for her, and re assured her it was her I was in love with and God must have a different plan for us, and that I considered Colton, her son from her first marraige(we both had been through nasty divorces). Beside's I considered Colton my son anyway. I paid his insurance along with her's, I was in a really good union at the time, made good money and we were living together anyway. She had a radical hysterectomy the day after Christmas, they went in through her abdomen, instead of vaginally because he wanted to make sure the endometreosis had not spread, it had and was attached to her bladder and something else, I don't remember now.....it was such a long time ago. Anyway, we got married and moved to las vegas, then after 6 years 10,000ft up in the rockies about an hour and 20 min. west of colorado springs, after 1 winter, we decided that was not the place for us. Come the end of may of '02 we put the house on the market and then Colorado had its biggest fire it ever had. Started by a US Forrest worker that had a few problems in the head and wanted to be a hero. But she started that fire at the beginin of june, and in three days it grew big enough that all the insurance companies put moritoriums on increases of insurance, and made it impossible to get insurance until the fire was completely out. That was Dec 11th of '02 when the snow finally suffocated the fire completely out. We moved back to OR as my sons father had just been diagnosed with brain cancer and was given 4-6 months, he made it 3 months and 28 days. Our house sold 5 days after the moritorium was lifted and we made a bee line back to seaside to help out, and get some father son time before it was too late. We knew we wanted to be on the east side of the mountains as we got used to the no rain thing. While in Vegas I learned A/C and Refrigeration and Commercial Restaurant equipment repair, so I looked for and got a good job over here with a great company that was geared toward family. I would be elegible for insurance in 3 months after starting, and they wanted me to start as soon as possible. Well we pretty much took the first house that fit our needs thinking we would buy back up to where we were after I got settled into the new job and got familiar with the area. So we moved in and I started work, traveling to the coast every friday after work and coming back every sunday night. We did that every weekend until my sons dad passed. About a month and a half into it my wife started to have pain in the upper right quadrant area. We did our homework on the puter and she figured she needed her gallbladder out. I of course said she was over reacting and we made an appointment with our now GP. I took her to her appointment, he ordered an ultrasound and said yep, lets get that gall bladder out. We explained the insurance thing and he prescribe vicodene and told her that if the pain got to bad to get in immediately as it could get life threatening. She was making it and we set all up to have the surgery the day I was put on the company insurance. She still had pain but not much and she wrote it off. then we got the news about her mothers cancer, moved her in with us and took care of her for 2 1/2 yrs until she passed. 3 days later our dog passed. 1 year later she was diagnosed with raynouds syndrome, then sjogrens disease, which is an auto immune disease, then she was diagnosed with G.E.R.D. and I got into my wreck. So her hurts she didn't tell me about until I was on a walker and could at least get around, and her girlfriend that moved here from vegas started taking her to the dr. as she started having more and more pain. Rashes would show up and disappear by the next day. she would get a temperature and an hour later she would be like 97.4 degrees. So they started looking for more auto immune diseases, the was diagnosed with fibromyalgia, then addisons disease, which was premature because the tests for that came back negative, then one dr. diagnosed her with lupus, that made sense to us as her mom had lupus too. so they sent us to ohsu and they said no to lupus, but she had celiacs disease, so we went gluetin free. and they did a colonoscopy and said no to celiacs, but she had an auto immune inflammatory connective tissue disease that they hadn't been able to name yet. Then she got a cold, and then what we thought was the flu, except her eye were sensitive to light, the came the headache which lasted a week, and she still had a low grade temp. so we went to the dr. and he said she had meningitis and to go to the emergency room and she would call ahead and get them ready for a spinal tap. our dr. said it was viral and with some meds and time it would pass, but he wanted a spinal tap done to verify. At 4am the next morning we were sound asleep and the phone rang, it was the hospital and they said get my wife back immediately as she had bacterial menengitis and everyone she came in contact with needed to be watched and she could die suddenly from brain swelling.......That'll wake you up. We were told were to go and somebody would be waiting for us to take us to isolation. When we got there, nobody new what we were talking about and they had an 84 yr old volenteer take us up to here room. While we instisted that he not come in contact with us and told them why and why didn't they know we were coming that it was there lab that called us. After we got to her room, a nurse came in and asked us what was wrong with her and when we told her we just got a call from the lab telling us to get her here as she had bacterial menengitis the nurse went white. called the head nurse on duty and all hell broke loose. They all gowned up put gloves and masks on and move her to a quarenteen room. They wouldnt come in the room and had me take her urine specimens to the door. ddidn't tell me to gown up or anything. Then after about 30 minutes of just one nurse on the whole floor come in and get an iv started. She put another bag on the tree and I asked what it was and was told it was an antibiotic and then she sat there and sqeezed the contents in, as if she needed to get the whole thing in my wifes body in 30 seconds or so.....I'm thinking what the hec is going on, as I looked out of the room to see like 4 or 5 nurses standing outside her room with gloves and masks on but they wouldn't get closer then about 5' from the door, except that one nurse. Then the ambulance came and took her to the next block to get an mri of the brain. meanwhile I was sitting in her room, kinda in shock when I looked up there is our GP telling me not to worry that she didn't have bacterial menengitis, it was viral and there fore not the big deal every one was making of it. How he knew that and every body else said it was bacterial was beyond me and it kind of made me mad, and then I lost it and went off on all the nurses, our GP, security, and the head nurse, telling everyone in the building they were all incompetant and nobody knew there head from a hole in the ground. Well after about 6 hrs it was determined that she had viral menengitis and that a lab tech. that wasn't even trained yet was the one that took the blood samples, which by hospital standards and cdc standards were to come from at least three seperate areas. Well, this guy just took them all from the iv that was in her already. Then we started getting bills, and more bills. I got mad and got the cdc involved, the nursing association, and every dr. offic I could that would listen. They finally after ruining our credit reversed everything as it was all there fault, ya think?
I am sorry for rambling......nervous scared energy I guess. Any way, we went to her appointment today and the doctor told us that her pituitary gland isn't working and she is almost in a crisis and if she passes out to call 911 immediately and tell them she has secondary adrenal deffincency. It can be caused by one of two things. her auto immune disease is attacking her pituitary gland and they had better figure it out soon so they can stop the attack before it is destroyed as the body needs this gland to live, or she has a mass on her pituitary gland, and will need to have brain surgery, wheather the mass is benine or cancerous.
So...... if you aren't to tired from reading this or board or have just lost interest do to the length of this letter I am asking to please pray for my wife and our family. I know it say's God won't give you more then you can handle, but please Dear LORD, we have had enough medical issue's, we get it, we all need to learn, and lean on our Savior and know we have room to grow and be examples for others and none of us are sin free, and back sliding has been to most all of us at some point or another. We are trying our best to be our best, and if you have tried to tell us or show us something that we aren't getting, please, please, please put it right in front of us in the most obvious way that we cant mess up your design for us as soon as possible........please
Mike and Lori


update: NO MASS ON THE BRAIN This is both good and bad news as if there would have been a mass, it could have been removed through the nose, who would have thought .....brain surgery through the nose?
The bad part is that this means some sort of auto immune disease is destroying it at a rapid rate. The rate of decline of cortisol has suprised even the endocrinologist. He is going to be in touch with the mayo clinic, and her past Dr.s all 4 different rhuemetologists(sp). Also bringing in our GP who is the one that found her hyperthoroidism, which is now hypothyroidism, and also the Dr. that found the adrenal insufficency. They are treating her with corticosteroids...high doses, and often. As her cortisol levels have dropped even in the last 3 days. He told us to not get discouraged, as this is a big part of the puzzle, and the fact it is moving so fast "could" be a good thing. I am having a hard time with that one, although it seemed to help Lori, it worries me. Because even if it is a big piece of the puzzle, there are still missing pieces, I just pray they are all in the box and they figure it out in time. He seemed more worried that there wasn't a mass in his voice and mannerisms to me. Again, Lori didn't seem to notice and was just focusing on what he said about it being a big part of the puzzle. So, If you could, Please keep praying for my family, I don't know what I would do without her.

[letsfish]

You have been through so much! And now this ! Please know I will be praying for you and your wife.

[CGRFish]

Ill pray for you and your wife

[demon]

[Capt.P-Bar]

[Lou]

[jokester]

Praying for you guys!!

-jokester

[ifishtolive]

You have my prayers ifish is such a great place for these things. I think of ifish as one big family

[or.hunter]

Having experienced many of the things you describe, I am very much aware of the fear, worry and concerns that you folks are going through.

I will say one of the things we have learned is that if things don't make sense to you keep asking questions.

We also are very familiar with OHSU's endocrinology department, and due to their diligence my wife is still with me 6+ years after her 1st proper diagnosis.

I do believe you are in good hands with them.

I will be praying for you and your family and you have my best wishes.

Sincerely
Mike & Lori

[siletzsal]

[Kpete]

I am praying for you.

[DAB]

Chinnookin.

I read every last word and it was hard for me to keep a dry eye.

I am so sorry that you all are going through such hard times.

I'll keep praying for Your dear wife and you.

Tell her I love the color of the thread she picked out for the rod you built for me.

A brother in Christ

DAB

[chinookin]

Don,
She will be happy to hear that as she has always been worried you would not like the colors she likes. She is sleeping right now and it always worries me when she sleeps before bed time. It isn't like her. I wish I had 1/2 the energy she usually had, but lately she will fall asleep while in the middle of a sentance. she has woken up every time I try to roust her so far, but the dr. said to expect that one of these times she won't and to call 911 immediatley.....what? like I am an idiot or something. She has been through soooo much the last 6-8 yrs it isn't even funny. Because as she was taking care of me after the wreck, she was sick, just didn't tell me cause she didn't want to worry me. How do you take that one. That is 3 years of time spent on me instead of her. The doc says it doesn't really matter as since it is auto immune, it has to progress so far before they can diagnose it, but he also said in a moment we had without Lori being right there. How much I had to watch for suttle changes. Now, without me even seeing them, the changes are happening rapidly and she will fall asleep in the middle of a sentance. Other days you couldn't even tell anything was wrong. I saw a post above from somebody that I will have to look back up, that ohsu did well for them. Praise God, but so far all they have done for her at ohsu is a few blood tests and an endoscopy and colonoscopy at the same time. Other then that, they don't contact us, don't send results of blood tests without us asking for them to go to another dr. that I am very disgusted, angry, and just plain ****** off at them. sorry for the language but I am looking at the future 0f my life partner, and am so affraid that I will loose her. She has been telling me for over a year that God told her she will end up in the emergency room before they figure it out. But when I ask if they figure it out in time, she just smiles and says it doesn't matter as heaven is way better then earth. I can understand that, but it leaves me alone, and I am not sure of the path or consequences that means for me. I posted on the bouy ten opener and somebody was nice enough to offer me a trip out tomorrow, but I cant' leave now. I want to go, just for a time out ya know? But She is my life and has stood by my side, our finacial situation, the mood swings my meds brought, and all she wants is my Love. As I sit here balling my head off writing you back, I keep thinking just let her sleep a little longer, but then, since it is so not her I think...go try and roust her up. I don't know what to do, say, pray, or think. I just am a complete mess. I am not even done healing yet, but her needs are so much more then mine.............................................. .........Im sorry I gotta go. I will never forget the trip we took down the clack. take care. mike

[Grantspastor]

I'll pray

[STRUTTIN-1]

I am praying as well.

[siletzsal]

[Reel Busy]

My prayers are with you.

[fishin20]

praying right now for you guys! Im getting goose bumps, and when i get goose bumps i know that god is with me so we both are praying for yall!