My Christmas Bears (Dave and Josie) and I want to wish you and your families a very Merry Christmas and a Healthier New Year to all. May the Blessing of the Lord be upon everyone this season.
December 23, 2009
Merry Christmas
My Christmas Bears (Dave and Josie) and I want to wish you and your families a very Merry Christmas and a Healthier New Year to all. May the Blessing of the Lord be upon everyone this season.
December 06, 2009
Finally I'm able to blog again
I want to thank my Lord for sending His angels to look after me during my absence from my blog. I would not be here if it hadn't been for His protection.
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.
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
Getting Closer
I know it has been a long time for me to post, thank you very much for being patient with me - I have been forgetting a lot of things lately - and blogging is just one of the things I forget.
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:
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
Another Angel
We have another Angel
Mason our 20 year old who has been waiting for his 2nd pair of lungs has become an Angel. He has been fighting a long time with infections and rejection of the 1st transplanted lungs. He has been in and out of the hospital since November he couldn't fight any more.
In case you have forgotten Mason's story - you can go to my posts on the right - Nov 16th, 2008, Prayer Request for Mason.
Please join us in prayer for Mason's family as I am sure they are suffering from his passing.
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