I Am Trying To Get Up To Date

I haven't been blogging since December so much has been going on. With the Lord's help I have been directed to some new Drs who actually have been diagnosing me properly. I have been told I have this when in reality it wasn't that in the first place but something else. I am doing good now that I am finally getting to the bottom of things.

Here is the most current medical info to date:

Echo/Bubble study: Dr V said it was somewhat normal - the heart monitor report to my Dr said Normal but he ?'d it because he said every time I had an episode my heart rate dropped extremely low. (When I got extremely dizzy). Dr V said the heart monitor and the echo results are not going hand in hand. He needs to looked into it further he said. He did diagnose me with POTS.

Colon: Defecography is scheduled for the 22nd report will immediately be faxed to my surgeon so she can schedule surgery - either a colostomy or a rectal prolapse repair.

Chiari Center: Shocking results - no I do not have Chiari (good news), but I have something worse than that - my neck is in worse shape than my Neurosurgeon thought. I am crushing my spinal cord so much so I am not getting any spinal fluid to the brain. Plus I have 3 new bulging discs above the fusion and more pinched nerves. This is causing my Occipital Neuralgia, can also be causing my colon / bladder problems. I was put in a hard ridged neck brace to take off the pressure from my spine. I wear this 24/7.

Dr H is a Neurosurgeon - who treats patients like me daily. Not a clear cut case. I am to wear this brace for 2 weeks report in any and all changes that happen. Then I wear it 2 more weeks and go in for more tests so he can schedule the necessary surgery to correct the spine issues.

Dr H also told me I have POTS but believes it has been caused from an Autonomic Dysfunction but it also can be caused by the spinal cord problem. Both Dr H and Dr V said I need to be on some meds to stop the action of the Vagus Nerve - that is why he said I am complicated.

At this point you are probably wondering what POTS is so here is the link http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome#Symptoms

As always thank you for your love, support, prayers and Phriendship I could not do all this without you. Deb

Greetings from a dear friend

Sorry it has been so long in writing. As you know my health has not been the greatest in the past few years. 2009 was the worst year for me having to endure 9 surgeries.

This year in May I needed to have my colon removed for which I spent 21 days in the hospital. Recovery time seemed to be very slow. During my healing time I was given a 45 day noticed to move. I was to move from my apt. to another in the attached building within my complex. My Drs were not thrilled and told me I should not move. Since management wouldn't budge I had to find a way to do this. Many phone calls were made.

With the help of many dear friends from my church and where I live - my packing, cleaning of the old apt. I was able to move on Sept. 3rd. I did not lift anything I wasn't allowed by my Drs. nor could I do the cleaning, I did do some packing but it was just my office and medical supplies. Many women pitched in to help move all the little boxes and 4 strong men from church came and moved all my furniture. I was totally moved out of one apt and into the new one in 5 hrs. A few of my friends who helped move me also came back the next day and unpacked me.

I am still trying to get used to my new apt. it is smaller than I am used to.

On Oct. 8th I saw a new Dr for a 2nd opinion on my Phrenic Nerve and Diaphragm - because 3 Drs believed it is causing my breathing problems - that EMG showed my Phrenic Nerve and Diaphragm are normal and that my breathing issues are caused by my heart and lungs - the EMG that was done in July last year was done too soon after my neck fusion and the readings were incorrect. I am in the process of getting all new Drs. to sort out what is going on. The new EMG did show that I have autonomic distal polyneuropathy in both feet and up the right leg. It is genetic and I was told without the Lord's intervention it can get worse. My feet and legs swell all the time and the water pills do not help it.

Then following my move I was told that I needed a "simple hernia repair". So I scheduled it for Oct. 11th. That surgery resulted in 2 emergency surgeries to stop an active vessel bleed. That made 3 surgeries in 3 weeks. I am on the mend but still dealing with a few new health issues involving my heart and lungs and was diagnosis of Lupus the day of my release from the hospital following the last surgery in Oct.

Through it all God has been with me providing the strength and Grace I have needed to endure and persevere. I have never been alone - He is always with me.

May's and June's Updates

Okay so I left here in April telling you that my colon biofeedback had to be stopped.

May 3rd I saw my GI Dr only for him to tell me I needed to see my Colon Surgeon as soon as possible. That there wasn't anything he could do for me. Not surprising to me because of all I have been through since January.

May 6th I saw my Colon Surgeon for a surgical consult - she scheduled surgery for May 21st - should be in hospital for 5 to 10 days. She would remove my large colon and reattach the small intestines to the remaining colon/rectum area. A walk in the park for her since this is all she does.

Well on May 21st I had my surgery - she removed 4 feet of large colon and reattached the small intestines to the 10 inches of remaining colon. This was done by robotic surgery so minimal cutting, to help in healing. My small intestines were to stay asleep for about 4 days and then things would be moving around properly in the BM department.

Not me - small intestines woke up within 24 hrs and caused a problem - bled through almost had to have a transfusion, luckily for me things stopped and no transfusion was needed. I was given food for a few days only to have it pulled because my intestines decided to stopped working again. Back to ice chips and minimal water for a week. By this time I was in the hospital 10 days, with no word has to when I could go home. I was told I needed to toot and go BM on a regular basis in order to go home. Four other Drs told us that the only way to battle my problem which is caused by my autonomic dysfunction is to have a colostomy. My surgeon was on board with the idea but was holding out to see what will happen.

Two weeks in the hospital and everything went haywire - I needed to have a pic line put in to get extra fluid and protein since I couldn't eat. What fun. Finally on day 20 a new med was given to produce BM and it worked I was going and going without stopping and tooting so much the entire floor could hear it. So on day 21 -3 weeks after surgery I could finally go home. Which brings us of June 11th.

Been home now just over 2 weeks - I am now going on my own 7 times a day which is totally the opposite of what had been going on - I have needed to stop taking all my colon meds because of this. Follow up with surgeon isn't until the 8th. At which time she needed to tell me if the removal was a good thing or not. I was told that if this happens a colostomy might be my only help well see.

Thanks for reading, that is all I can tell you for now, I will be back when I know more.

Another to receive his wings

Having PH has it's consequences. It is so progressive with no cure. Some live many years with the right medications, while others don't have a fighting chance.

TW as I knew him lost his battle to PH today. I followed his blog "TW Country Ramblings" for some time but in June last year he stopped blogging. He became very ill. In and out of the hospital. 3 months ago he entered the hospital and today received his wings.

Please keep Judi and the boys in your prayers this is not easy on them, Terry (TW) was only 58.