December 23, 2009
December 06, 2009
Thank you to all who have been praying for me, thinking about me and checking up on me it has been a long 5 months. I will not bore you with all the details but will share briefly as I can what has been going on.
I left you hanging in July with a pending surgery in August. I am truly sorry for not updating since then but as you read you will know why.
August: I went in to have my stimulator adjusted, which was supposed to be a 15 min. procedure. Well they ended up replacing the wires a 2 hr surgery. Recovery was slow and had to spend most of my days in bed. When I went to have the staples removed 2 weeks later I was informed based on my urine journals and test results I would need to have the Stimulator removed totally. Surgery to be scheduled later. Also a biopsy of my muscle needed to be done per my Neurologist.
September: I needed another breast surgery - I was leaking blood for 2 months. Surgery was on the 17th. Much was removed - results came back as 3 ducts were blocked and 1 had ruptured. More recuperation.
Between all this and everything else my computer decided to crash everyday - a friend of mine took it and fixed it - my computer was gone from Oct. 1 to the 20th.
October: I scheduled to have the bladder stimulator removed on Oct. 20th. A simple procedure, go in and go home in an hour right. Nope, the Neurologist said my bladder Dr. could do my muscle biopsy through the butt muscle. So about 2 hrs later I was finally sent to recovery to wait another 2 hrs. I finally got home as the numbing medications were wearing off. Yes I was totally awake - because I was on my stomach for the whole thing. They had to put a drain in so fluid would not back up.
The next 2 weeks after this surgery - I spent in and out of ER's, urgent care, the doctors office and had a friend come down 2 times a day and change my dressings. I could not do this because of the location and the fact they sewed the drain tube in place. At one point I even had to go in to have my drained pulled and another put in and at that time they also they did 5 needle aspirations to help with the fluid build up.
During all this 3 Drs. felt that much of my problems (nerve wise) is possibly related to MS, more tests needed to be done to rule this out.
Muscle Biopsy in the preliminary report the finds were: Myoadenylate Deaminase Deficiency - a Metabolic Muscle Disease. The biopsy was sent for further testing. Still waiting for those findings. Also who I have to see about that.
November: Met with my Neurologist in Waukesha she agrees I should be tested for MS she said all symptoms point in that directions. MRI's were scheduled and so was a lumbar puncture (spinal tap).
I had the MRI's done of my cervical and brain, though I still had my drain in laying flat for 2 hrs I managed to do it. No fun.
My spinal tap was Nov. 11th. The procedure itself was not that bad, three punctures later he had all the fluid he needed and I was off to recovery to lay flat for 4 hrs. I went home to lay flat for the remainder of the day.
Then on Thurs. morning I went to my bladder Dr. to have the drain pulled again 3rd trip only to find out I was still draining fluid so they couldn't take it out.
When I got home my head started to hurt so I went to my discharge papers from the spinal tap only to find out they weren't my papers they had nothing to do with my procedure, so I call the hospital and talked the radiologist who did the spinal tap and he told me I had a spinal headache common in 1 to 10 people. He told me what to do and go to pain management on Friday for a blood patch. I could not sit up longer than 5 minutes at a time, then I had to lay flat for about an hour. On Friday I was told they couldn't do the patch because I just had my drain replaced I was considered a very high risk, so I had to wait until Monday. But they assured me the headache would be gone by then.
Monday Nov 16th I went in as an emergency patient and they did the blood patch - they take blood from you arm and inject it into the puncture. In my case she said I had 3 punctures so that explained why I had the headache so bad. 1 hr later the pain was gone.
Test results of the spinal tap showed no MS (praise God). The MRI's of the cervical and brain showed 3 new herniated discs at the c1, c2, and c3 levels just above the cervical fusion I had in February. Not a common location from what I am told.
That is about it - more tests and some results still pending, I will try to update more frequently, these last few months I just wasn't up to it. Thanks for not giving up on me. Deb/Teddybear.
July 26, 2009
Many updates to mention ~
Shoulder - Is doing great since the surgery. I still have some range of motion issues but over all I am glad I had the repair.
Sleeping - Is going good - now that I am on the right medicine for the periodic limb movement disorder (PLMD) I can sleep - I do wake at times with the muscle cramps but at least I can go back to sleep within minutes verses hours.
Housing - Awhile back I mentioned about an 185.00 a month increase - well with much prayer I will be staying where I am - my increase will be 165.00 on top of what I already pay. My debt management co. has agreed to lower my pymts by 135.00 a month which will help pay the increase. I have help from anonymous donor for the rest.
EMG - of my muscles and Phrenic nerves to my diaphragm done on the 17th didn't come out as good as I had hoped for - but it is an answer to what might be going on with my breathing etc....
Here's what I know right now:
- my Phrenic nerve is only working at 10%.
- muscles to my diaphragm are damaged
- right lung only working at 50%
- left lung at 75%
- compromised breathing due to lung disease - and damaged diaphragm
My Dr. is having me do major blood work to see if she can find the cause of muscle damage, she said I am headed for both muscle and lung biopsies. My breathing is becoming harder and harder, she had told me that I am dealing with a progressive disease, she is working hand and hand with my PH Dr so we can "finally" get a true diagnosis as to what is going on.
Stimulator problems - I have a NeuroStimulator implant that works on my nerves for my bladder, apparently the wires have moved and the stimulator is not working properly - so you guessed it - more surgery. I have to have the wires repositioned on Aug 11th. In the mean time I had to add yet another med to help control my symptoms.
I am now waiting for the rest of the tests to be ordered and the results are in then I should have a clear picture of what is next to come. Thanks for reading - I hope and pray I can soon blog more on a regular basis - until then have a blessed day, Deb.
June 15, 2009
June 04, 2009
May 09, 2009
I can't believe it has been over a month since I blogged last April was a busy month for me I'll try to update the best I can.
April 5th and 6th I was in the ER - with what they believe is colitis. I will be having a colonoscope on the 19th of May to confirm it so I can get on the right meds.
April 10th I had an Arthrogram/ct scan on my right shoulder - that showed I have a tear in the anterior rotator cuff, I am bone on bone and have something wedged in between the bones. It took three years of therapy and neck surgery to get the right diagnosis for my shoulder. Surgery is scheduled for May 20th.
I had my 2nd sleep study done on the 15th of April - just got the results on the 5th of May. Turns out I do not have sleep apnea, I do not snore or talk in my sleep. However I do not really sleep at night either. It took 3 and 1/2hrs to fall asleep and within 1 and 1/2 mins my brain decided to wake up. In the 5 and 1/2 hrs I was sleeping my brain woke up 117 times. I also have what they call periodic limb movement disorder (PLMD) different from restless leg syndrome. Where my brain wakes up and tells my feet to cramped up this happened 49 times. So that explains my daytime sleepiness, I don't sleep at night my doctor said it is like my brain won't shut off. Now on new meds for that.
I went to a new Endocrinologist on the 21st. I like this doctor very much. Even though I have no thyroid he will work with me. He will take over my Diabetes, thyroid issues and my cholesterol problems. A few things my primary care doctor doesn't have too. My diabetes is in control but he needs to keep an eye on it since it is a family trait.
Last but not least - my neck surgery was a huge success - no pain in neck, arms or hands. With the exception of my right shoulder but not related to my neck problem. If I didn't have the scar no one would even know I had surgery with a bone fusion. I believe the Lord healed it. The dr said I should be still in pain, not driving and not turning my neck for about another 3 to 5 months. It has been only 3 months since the surgery and I am doing great. Some of my friends who had this surgery 2 years ago are still having problems.
I see my pulmonary doctor on the 13th of May.
That is it for now. I will post when I can. May the Lord bless you and your family. Deb
April 04, 2009
I on going to update a little about what is going on in my life.
I was looking forward to getting my test results from my 20hr sleep study. Well, that isn't going to happen until May 5th. Apparently the Sleep Study Center has lost my evening data, my daytime info was already sent to my Neurologist. I will be repeating the night study on the 15th and will be compensated for having to do it again.
I received my results of the blood tests my Rheumatoid Dr. did - too many highs and lows to be Lupus, which is good. But I was looking for an answer. He has referred me to an Endocrinologist and will be seeing me on the 21st. Since I have no thyroid and have been on the proper meds, they need to look into the pituitary gland and the adrenal glands.
My neck is doing great - I believe the Lord touched it - no more pain and I have almost 90% of neck movement. The out come of the surgery did however prompt us to look into my right shoulder - turns out I have a torn rotator cuff. I will be having an arthrogram/ct scan on the 10th to see if my shoulder requires surgery.
Sometime ago I had asked for prayers for Siv due to the passing of her son Nikolas. I believe I also asked prayers for a little boy named Linus. Siv met Linus' family while Nikolas was in the hospital. We have been praying for Linus who also had PH. Well I have to tell you that Linus has also become an angel. He passed away this week. Siv is in need of more prayers - she needs peace and so does Linus' family. To have to deal with 2 infants passing within a few months apart has got to be very hard.
Thanks for reading my blog and being patient with me. I read the other blogs just don't comment - been too tired. Love you and may you have a blessed day, Deb
March 18, 2009
March 04, 2009
I have not been myself lately since last Thursday I have been extremely tired, blood levels wacky, SOB (shortness of breath), swelling up everywhere you name it - it's been mounting - just found out on Monday I have at least 6 autoimmune disorders, I am just fizzled. I can't concentrate so I felt I better not blog or post.
Then yesterday the PH office calls after I left 2 full detailed messages and a return phone #, she calls my home (not the # I left) and tells me not to call her anymore it isn't her problem - my PH Dr is saying I don't PH - so not to call her - I can continue with Dr. P at a different # just don't call her.
She told me on my answering machine to see a plain pulmonary dr who treats just lung problems, and that my PH Dr talked to my Neuro dr and he should treat me. (I already told her 3 times my Neuro Dr will not follow the diaphragm issue) I don't think she really listened to my messages.
My Neuro Dr. disagrees with the PH Dr and therefore will not treat or test my diaphragm. My Neuro Dr feels I need to go back to the PH Dr who deals with the lungs. I feel like a ship in the sea being tossed to and fro and it doesn't know which way to go. I have been praying and reading the scriptures I know it is all in God's hands.
I called the generic pulmonary line today, a live person told me I can't see my regular PH Dr any more, I have to start over. So she tranfers me to another #, you guessed it an answer machine - hopefully she will return my call on the # I provided. To add further to my situation I am still losing weight daily and swelling at the same time, legs, feet, neck, arms, abdomen etc... All I want is concrete answers - the days and months just go bye it has been 17 months and I am still being tossed around. I know I am a puzzle - but please find the missing pieces so I can get on with my life.
I need to have an action plan and I do not have anything. I don't feel adequate to help others on here who really need help - so I stopped posting, I don't feel qualified - so I say nothing. I might be on a lot of meds for many things but not on PH meds. So how can I help? I can't handle all that is going on in my body, all the diagnosis on top of one another have finally got to me.
I found myself crying over something so stupid - my car has to be parked in the under ground parking lot. I washed the day before the neck surgery. It's covered in dust - and people thinking they were funny - wrote - all over my car - in the dust. I got up set and started crying - its my car for pete sake! But no one should have the right to deface someone's car - let a lone draw graffiti on it - I lost it. "I can't clean my car nor will I pay someone to do it" Just leave my car alone.....
One of my wonderful social workers from the hematology clinic I go to once a week is trying very hard to find me a support group attend as well as a 1 on 1 face to face. A support group for someone who deals with multi-medical problems. You are my Pfamily I don't have my family to go to - you have been here day in and day out for me I love you dearly, your support is so greatly needed right now. Will I have to leave you if I only have a lung problem? This site is for PHA people I might not qualify. What do I do?
I did not think this neck surgery was going to be so painful - had to stop the meds because they are making me very sick. So now I sit or lay on the couch and do nothing because of the pain, I can't get comfortable.
Thanks for reading this far down. Love you all thanks for the support. Deb
P.S. I haven't been blogging or commenting so please forgive me - I am however praying for all in need. I just don't know what to say anymore, for that I'm sorry.
February 19, 2009
a brief update since surgery - at present i can only type with one hand so i am not using capital letters so please bear with me. . .
yes, my swallowing is getting better, i am staying on soft foods to be on the safe side. my pills only have to be broken down to 1/4's which is much better than it was, i had to try to crush them. sitting is tolerable with ice packs, laying down is getting better. staying on the pain pills every 4hrs helps.
i have a call into my surgeon about my left arm - besides the 14+ pain i am in (based on their pain scale 1-10), i can't use my left arm at all if it requires bending it.
i know it has to do with the un-pinching of the nerves because my pain meds are not with this. it is not red, there is no warm areas, no lumps, no swelling, so i am thinking it isn't a clot. i have had those in the arm before this doesn't feel like that.
it is like a straight line coming from my arm pit area of my arm all the way down to my palm via the ulnar nerve.
please pray with me that this goes away, it is very hard to do everything one handed and the Grace to get through this. i pray it is temporary and will get better. keeping my left arm hanging down does help. while typing i just lay it on my lap.
i have been reading the blogs as often as i can, i am praying, just not able to comment at this time, please forgive me. thanks for your prayer and support, i will be back when i can.
February 14, 2009
I came home the next day and am trying to sleep - I am in a lot of pain - head/neck/arms/hands/ and spinal cord area. Talking is difficult. I do not have a neck brace he said it would cause more problems with constriction on the nerves and muscles. I have minimal movement up and down and nothing side to side. I go back on the 24th for a follow-up.
Healing can take up to 2 months, the Dr said I could be in pain that long as well. My biggest struggle is swallowing - I am on a liquid plan for now, my medications that are a huge problem I can't crush them, I even tried to put them in hot water to dissolve them no luck. I have a pill splitter so I cut them up as small as I can, sometimes they still get stuck.
I will post when I can.
February 10, 2009
Psalm 18:1-2 “I love you, O Lord, my strength. The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold.”
Matthew 28:20 "Surely I am with you always."
We are never to look ahead to changes and challenges in our lives with fear. We should like look at them with the full assurance that God will deliver us out of them. Hold on to His hand tightly so He can lead us through all things. And when we can not stand, He will carry us.
He will either shield us from suffering or give us the grace and strength to get through it. We are to be at peace and not have anxious thoughts or worries. What can worry add to our lives? Nothing, so why worry just leave it in His hands.
That is how I feel entering into my neck surgery 2/11/09 with total assurance that God will take me through it without harm. I am at peace knowing He will protect me and will guide the surgeons hands. He will help with my healing whether it is with medications or just a simple touch from the Masters' hand.
I will be off my computer for probably one week. Thanks in advance for your prayers. Talk to you soon. May all who read be blessed as well as their families. Love Deb.
February 06, 2009
Let me try to explain - a test they did a week ago called a fluoroscopy - tests how the thoracic diaphragm moves up and down when one breathes, they also did the pulmonary function test (PFT) to see how I breath in and out. The PFT showed mild airway problems in the lungs.
The Phrenic Nerve arises from the 3rd, 4th and the 5th cervical spinal nerves - which works the diaphragm. Following so far? The test showed my diaphragm is not working properly. It could be a direct link to the pinched nerves in my neck. Lord we are praying it is the answer we have been looking for. It has been a long 16 months.
My neck surgery might be a blessing in disguise because I have many pinched nerves in my cervical starting at the 4th level down. The thought is - if they free up the nerves in my neck my diaphragm might work better, then my breathing will get better, as well as my arms and hands.
My PH Dr wants to have an EMG done of the chest and diaphragm to see why it is not moving up and down. Hopefully this test can be done while I am in the hospital. If not I'll have to go back to the PH dr to have it done. They will call me on Monday to let me know what's next.
Thanks for being patient with me in my postings, I am told that my hands will get better with time after the surgery. Only a few days left. Thanks for reading. Love Deb
January 29, 2009
Wednesday: Hematologist - will repeat blood work in a year, said that once a person acquires (gets) lupus anticoagulant it doesn't go away - need to stay on Warfarin for life. I'll go on the shots starting the 4th and remain on them until I'm up to 2.0 INR following the surgery. I will do my INRs at home starting 3 weeks after surgery.
Thursday (today): PH appt. what a joke - Dr P said based on my RHC he doesn't think I have PH but "some kind of lung condition". He says my numbers weren't high enough to be PH.My 6 min walk today was only 150 meters or 452 feet - the same as Oct. no change in the walk, I did lose 8lbs since Oct. - I almost passed out twice and was very SOB. My 02 again started out at 94 and went up to 100. Heart rate went from 80 to 100.
I had a fluoroscope done to see if my diaphragm goes up and down with big breathes I almost passed out there as well and I have to go back next Wed. for a PFT Pulmonary Function Test and blood oxygen gases, I just love those yea right, this test is done in the artery of your wrist.
Dr P is thinking the pinched nerves in my neck could be causing my SOB with movement. He thinks the decompressing of the nerves is the best thing for me right now. I will know more next week after the other tests. He is looking for Interstitial Lung Disease - Pulmonary Fibrosis.
I'm more clueless about the SOB and PH than I ever was, I don't know what to think regarding this.
Other than all that I'm just hanging in there I read and pray - posting is getting harder each day. Thanks for all your love, prayers and support. Talk to you all soon, love Deb
January 24, 2009
January 21, 2009
January 16, 2009
I take my medication for pain and rest a few hours - I get up eat and go back to sleep. I will not get any results to the large chunk that was taken out until the 20th.
Frozen Ice Outside my Window
My Dr. called last night to make sure I was doing alright and that I was staying indoors, he said I shouldn't go out until my next appt. It has been below 0 the last few days, even schools have been closed. I think I will stay inside where it is warm.
Thank you for all your prayers I will post next week when I know more. Blessings to you. Love Deb.