December 12, 2010

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.

June 30, 2010

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.

May 12, 2010

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.

April 13, 2010

Aren't Friends Wonderful

I have many friends that I laugh and cry with. Then I have friends I just talk to on the phone, some I email and some I just pray for.

I have a special girlfriend I have known for years dating back to my home in West Allis. I think I have known her at least 25 yrs. The reason why I even mention this is because she even emails me to tell me she misses my blog and that it is time to update. I think if it wasn't for her every couple months reminding me I would totally forget. Thanks Carol you are very special to me.

As long as I am on the subject I would like to tell you about our relationship and how it became so special. When I first met Carol we bonded immediately we both had children around the same ages. Anyway as time went on she had a few more children - but she had a health condition is which she needed my help - to drive her children to school. So I would send off my children to school - drive to her house - and try to put her children in my car (station wagon) - but it wasn't big enough so I needed to drive her children in their van. To me the hugest van I ever saw - and I had to drive in rush hour traffic with someone else's children to and from school. It was only for a few months because they were going to move to another town and then begin to home school.

Now you are probably wondering why I even mentioned this, well here's why. 21 years later after many of her children were out of her home we were talking about vehicles, we were talking about the same van she had way back in the days of school age children and I got to talking about my transporting her children to school and I finally told her how everyday I was scared to death to drive her van I had white knuckles. I didn't have the heart to tell her because she was my friend and friends do whatever they can to help one another. We laughed so hard when we talked about it. She said why didn't you tell me? Why I said, there wasn't anything you could do about it - you couldn't drive the children to school and besides that's what friend are for.

She has finally given up that van from 25 years ago. Oh the memories of that van. Thanks Carol for your friendship, thanks for being there for me and for reminding me it's time to blog. Love Ya.

April's Updates

Therapy: I have been in Neuro Therapy 2 days a week and speech therapy 1 day a week. I was told by my therapist she doesn't work on the orthopedic part of me that I needed to go to see my ortho therapist. That ended being 2 days with him as well. 5 days a week in therapy I needed a break. In Neuro therapy they work with balance and endurance she tested my walking for 1 minute at her normal pace. That was a joke - I walked 100 feet - pulse was 124 and I was ready to pass out - her response was I guess you are not ready to do any kind of Pulmonary Rehab. What was she thinking?

With all the therapy going on I was being torn apart. I was so tired I didn't know what to do. Finally I talked to my neuro therapist and asked her what she was trying to do with me and if there was any way my ortho therapist could work with both aspects of my therapy? She talked to Craig and now I am doing only 2 days of therapy.

Colon: I have had 9 weeks of biofeedback for my colon and she stopped my treatments because it isn't working. Well both my colon surgeon and my GI didn't think it would work because my hypo-motility issue is coming from the small intestines not the large colon. Anyway we tried. I see my GI May 5th to see what I am up against.

Pulmonary: I saw my Pulmonary Dr in Feb. and he said I am not getting better but worse and said it will be interesting to see how the autonomic testing shows. He agrees that something is causing my autonomic system to go haywire. He had me do an esophragram because he said if the Phrenic Nerve is not function the esophagus wouldn't be either. That test came back - mild esophageal dysfunction. Another autonomic disorder.

Heart: Somewhere in between all this I received my Echo/Bubble Study showing Left Ventricle Diastolic Dysfunction (LVDD), with impaired relaxation. Right ventricle: wall thickness mildly increased. Right Atrium is mildly dilated. So basically the Dr who saw me in Jan. never told me this I found out when I requested to report 3 times. This test shows I am having heart problems but she said nothing. I did talk to my Cardiologist but there isn't anything he can do for me now because of my consistently low blood pressure. The meds they put people on for this condition drops the blood pressure and for me he said it could kill me. So I have to get worse before I can get better.

I was told by a Rheumatoid Dr that my problem is just Fibromyalgia - but no one is in agreement with her.

Autonomic testing: My autonomic test results came back a couple of weeks ago, my neurologist called me to tell me the news - inconclusive - telling me some tests were normal and others did not give them enough data to give an autonomic diagnosis. She wants me to go to another hospital to have a complete work up because she believes without a true diagnosis as to what is going on I will not get better. Treatment can't begin until they know what they are dealing with. I am now waiting for my PCP to set up the arrangements for UW Madison and get back to me. She has been out with the flu and just got back today.

February 22, 2010

February's Updates

I know I am behind again. But here is what I am up to theses days.

1/14 I had my fancy colon test - called Transit Marker Test. That result confirmed the fact I needed to see the colon surgeon on the 28th.

1/18 was blood work - follow up visit on the 25th showed my anemia was gone. No more iron pills. That I still have lupus anticoagulant a clotting disorder - need to stay on my blood thinner meds. I was hoping that changed.

1/19 saw my ortho dr and he ordered more Physical Therapy. I will go back in March for another steroid injection in the hip.

1/21 had an other Echo-bubble test - saw the New PH Dr on the 28th only for her to tell me I do not have PH. She said at the time of diagnosis in Oct. 07, I had what they called a temporary high reading of PH due to the enlarged pulmonary artery that had blood clots going through it at the time. She recommended I see 2 more drs at Froedtert - a Physical Medicine and Rehab Dr (PM+R) as well as a Rheumatologist which is on March 2nd. Dr. Z is also believing that with my Phrenic Nerves, bladder and now the colon nerves being affected that my problem is Autonomically related. She also said to stay with the same Pulmonary specialist because he is the best in his field. She told me that Dr. P is not upset with me just frustrated because he doesn't know what is wrong with me in totality and wants answers so he can better treat me.

I saw the PM+R dr on the 12th and she ordered Neuro therapy with Physical therapy.

1/28 was my appt. with colon surgeon - she ordered a manometry study. Okay now you are up to speed.

Current happenings:

I start my Physical therapy and Neuro therapy the 23rd of Feb. I have no clue what they will be doing or how long, it is 2 days a week for now.

I had my manometry study done of my colon which turned out not good - it told them I have colonic hypo-motility. My colon moves abnormally slow. I am currently in biofeedback because my nerve at the end of my colon is dead. They said that this is an autonomic disorder. The surgeon pushed to have my Autonomic testing done 2 weeks earlier than planned. Which I had done on the 17th of Feb. That was a 4 and a half hour test which I do not want to have to go through any time soon. The results of this test should be here in 4 weeks.

On the 25th this month I go to have another Pulmonary Function Test done to see if Pulmonary Rehab will help me. Right now we are all up in the air as to what will help or not. I will see the pulmonary dr the same day.

A couple of other tidbits: I am completely off my diabetes meds and my sugars are still under great control I have to watch everything I eat. Due to my breathing and swallowing issues at night I was approved to have a hospital bed. It is not a new one like in hospitals now a days, but it is a bed I can sleep in an upright position.


Aside from all this I have a special note for my Phriends at PHA, it saddens me that you have Pulmonary Hypertension a horrible lung disease where there is no cure. When I went to see the new PH Dr I was hoping she could tell me once and for all I had PH. I was looking for this diagnosis for two reasons 1) so we could put a name to what I have been going through, and 2) so that I could relate to you all in a better way. I go to the message boards and I feel helpless so many times, because I can not relate, I feel your pain but I don't have to live with it so I truly do not know how you feel and I can't give input many of the times. I only know what PH is by reading what is out there on the PHA website, and by writing you guys back and forth.

I am thankful that you have taken me under your wings and call me your phriend. I pray that some day you will receive the news that a cure has been found. You have a deadly disease with no cure and that truly hurts. Thank you for always supporting me, caring for me when you have more on your plate than I do. With much Love, Deb

January 12, 2010

It's A New Year

It's A New Year - with new beginnings and more changes.

So how has your New Year began? Mine is going to be different with many changes.

I am starting the New Year with a few less medications - I am trying everything I can to put my diabetes in remission. My doctor thinks my June I will be off all my diabetes meds. Also I have 2 new doctors. One for my PH and the other for my colon.

This month alone I have appts. with the Hematologist, Orthopedist, PH Dr and a Colon Surgeon.

The 14th - I am having a fancy test done - I had to swallow this capsule with 25 neon markers - and I go the 14th for an X-ray so they can count the tiny markers to see how far they traveled in my intestines/colon. I am blocked up again. Apparently since my stimulator for my bladder quit working so did my colon. With an increase of fiber and different meds nothing seems to be working.

The 18th
- labs to be done for the blood disease, anemia and clotting problems. Results will be given on the 25th.

The 19th - the Ortho Dr. to make sure my hip, knee and shoulder are still doing okay. I had a cortisone shot in the hip last month for bursitis. Might need another one.

The 21st - I go have an Echo-Bubble test done.

The 27th - I go to the New PH Dr. for the results of the Echo/Bubble test and go over all the past tests to see if I do or do not have PH and if she can help me. She will also let me know more about my Phrenic Nerve.

The 28th - is a Surgical Consult with another new Dr. regarding my colon. My GI Doctor doesn't know what else to do - we now know I can't move my bowels on my own because the nerves do not work. I'll have to keep you posted as to what happens next with this.

Could I possibly fit any more tests or doctors appts in one month? I don't think so.