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HEY EVERYONE ...

FutureBack.MomFutureBack.Mom1,000+ posts
Thought you all might like an update from the invalid herself ...

Was hospitalized on the 17th in an attempt to (1) get some relief from respitory distress,
(2) get some more testing done on a major scale/
(3) get some heavy duty antibiotics going intravenously AND MOST IMPORTANTLY
(4) get heavy duty pain management started with round the clock care (one of the more senior nurses said she had not seen anyone in as much pain as I was experiencing in a long time) ... and it only happened WHEN I BREATHED

It was finally obvious to everybody that this baseball mom had something a little bigger than pneumonia. I was being tested and IV'd with meds almost 24 hours daily ... nothing like a little needle stick at 5 in the morning (and I am not kidding). And sleep is almost an impossibility in a hospital that has every bed filled. Had a bronchscopy on Thursday but the results were inconclusive because they really can't get sufficient tissue, so I had an open lung biopsy (doesn't that sound painful?) on Tues morning. The surgery went well ... no need for blood transfusion even tho I had suddenly become anemic (could that be from the 3 gallons of blood that has been drawn from my poor sick body?). Surgeon is excellant ... a bit of a phantom surgeon but I am here to tell you that I have had absolutely no pain from the surgery.

Spent 2 very long days in ICU tho I really could have gone to a regular room on Wed but that is the insurance company's problem. Am now in a bright room (my first room was constantly dark because one of the other patients wanted everything closed off near the windows ... it was very depressing to be living in nighttime lighting all day.)

The good news is ... WE HAVE A FINAL DIAGNOSIS AT LAST (praise the Lord) ... and it was the preferable type of diagnosis from my perspective so it was a direct answer to prayer the day after I cried to my mom that I didn't think I would ever feel good again.

I have an inflammatory condition, not an infection. The lung x-rays and CT scans were presenting the tissue as pneumonia when it fact it was fibrous. My pulmonist has said that the second pathologist (they sent it outside the hospital for a second opinion) basically confirmed the first diagnosis but with different terminology (depends on which cells etc the pathologist sees that leads to the final terminology.

Anyway, I have PULMONARY FIBROSIS ... apparently pretty rare and not sure any of my doctors have seen it before. May even be a result or symptom of some auto immune disease. Gave several of those doctors a challenge, hey? Told them to be sure to use my name when they write their papers for the American Medical Society.

Condition is treatable with steroids (there goes my career) which were started 3 days ago. I can honestly say that my biggest problem now is dealing with the shortness of breath ... it only happens when I move ... which will require oxygen at home and when traveling ... as well as some respitory therapy and increased activity levels. Oh yeah ... I basically have to learn to breath differently for a while because my lung capacity is so compromised. We are hopeful that the most recent sites will respond quickly ... they really are new since this all started so we continue to pray for that result.

I feel about 200% better than I did when I came here 11 days ago ... I have to say I was a pretty sick puppy.

I cannot tell you all how much your continued prayer support uplifted my spirits. 123KMOM kept me posted on the requests for info ... she was my medical reporter. And I know that many positive thoughts and prayers were sent out in my name from my friends here at the good old HighSchoolBaseball websight. May God bless you all mightily for your kindness.

Oh yeah ... one more thing ... I GO HOME ON MONDAY ... praise the Lord.

Sincerest thanks and love to all ...
FutureBack.Mom
Mary Ann * * * * * * * * * * * * * * * [i]"The Lord Himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged." Deuteronomy 31:8 [8/21/08][/i]
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ClevelandDadClevelandDadHSBBWeb Administrator
quote:
and it only happened WHEN I BREATHED


arrrgh Eek

FBM - that is one of the most harrowing stories I have ever read. I do believe in the power of prayers and they will continue. Thanks for the update and we all will continue to do our parts to help you get through this unbelievably difficult and painful time. At least the knowledge of the diagnosis finally sounds like it has brought some comfort. My thoughts and prayers for a full and speedy recovery
ClevelandDadClevelandDadHSBBWeb Administrator
From The Book of Job, chapter 1

quote:

1: There was a man in the land of Uz, whose name was Job; and that man was blameless and upright, one who feared God, and turned away from evil.
2: There were born to him seven sons and three daughters.
3: He had seven thousand sheep, three thousand camels, five hundred yoke of oxen, and five hundred she-asses, and very many servants; so that this man was the greatest of all the people of the east.
4: His sons used to go and hold a feast in the house of each on his day; and they would send and invite their three sisters to eat and drink with them.
5: And when the days of the feast had run their course, Job would send and sanctify them, and he would rise early in the morning and offer burnt offerings according to the number of them all; for Job said, "It may be that my sons have sinned, and cursed God in their hearts." Thus Job did continually.
6: Now there was a day when the sons of God came to present themselves before the LORD, and Satan also came among them.
7: The LORD said to Satan, "Whence have you come?" Satan answered the LORD, "From going to and fro on the earth, and from walking up and down on it."
8: And the LORD said to Satan, "Have you considered my servant Job, that there is none like him on the earth, a blameless and upright man, who fears God and turns away from evil?"
9: Then Satan answered the LORD, "Does Job fear God for nought?
10: Hast thou not put a hedge about him and his house and all that he has, on every side? Thou hast blessed the work of his hands, and his possessions have increased in the land.
11: But put forth thy hand now, and touch all that he has, and he will curse thee to thy face."
12: And the LORD said to Satan, "Behold, all that he has is in your power; only upon himself do not put forth your hand." So Satan went forth from the presence of the LORD.
13: Now there was a day when his sons and daughters were eating and drinking wine in their eldest brother's house;
14: and there came a messenger to Job, and said, "The oxen were plowing and the asses feeding beside them;
15: and the Sabe'ans fell upon them and took them, and slew the servants with the edge of the sword; and I alone have escaped to tell you."
16: While he was yet speaking, there came another, and said, "The fire of God fell from heaven and burned up the sheep and the servants, and consumed them; and I alone have escaped to tell you."
17: While he was yet speaking, there came another, and said, "The Chalde'ans formed three companies, and made a raid upon the camels and took them, and slew the servants with the edge of the sword; and I alone have escaped to tell you."
18: While he was yet speaking, there came another, and said, "Your sons and daughters were eating and drinking wine in their eldest brother's house;
19: and behold, a great wind came across the wilderness, and struck the four corners of the house, and it fell upon the young people, and they are dead; and I alone have escaped to tell you."
20: Then Job arose, and rent his robe, and shaved his head, and fell upon the ground, and worshiped.
21: And he said, "Naked I came from my mother's womb, and naked shall I return; the LORD gave, and the LORD has taken away; blessed be the name of the LORD."
22: In all this Job did not sin or charge God with wrong.
MN-MomMN-MomHSBaseballWeb Owner
FBM,

We have all been praying and hoping for you, and we can admit it now, at times we were very worried about what diagnosis would be found. Although you have been through a VERY painful ordeal with lots of recovery left to do, it is such a relief that the doctors have found the cause and can treat you.

Continued prayers and warm wishes,

Julie
rz1rz15,000+ posts
quote:
I have PULMONARY FIBROSIS ... apparently pretty rare and not sure any of my doctors have seen it before.


FBM,
If you look at that in a "glass half full" mentality it makes you unique and special. As much as the roid craze has been shown in a negative light, they do have value and I know your future will be at the ballpark and not Venice Beach

Get well soon, spring training is a little over 100 days away .

-rz-
M MaBBmom10+ posts
Dear FBM,
Great to hear that you finally have a diagnosis AND that it is treatable. Getting used to living with a chronic condition is not easy (experience speaking) , but with your positive attitude and all the prayers, love and support you have I am confident you will soon feel like yourself again!
Keeping you in my thoughts and prayers,
Ann
Still LearningStill Learning100+ posts
FBM,

I'm a new poster on the HSBW but a long time "guest". You've have been in my thoughts and prayers and will continue to be as you go through your recovery process. Knowing what your dealing with/diagnosis is such a wonderful answer to prayer. Thank you for sharing your difficult times with us so that we could support you in prayer and share in the joy and blessings of seeing how God answers prayer and gives us each other for support.
Last edited by Still Learning
FutureBack.MomFutureBack.Mom1,000+ posts
Greetings all from my trusty recliner (and not the hospital bed).

Was discharged today but with all the wonders of medical technology, they haven't done anything to speed up the process of getting the patient into the family car from the hospital wheelchair.

Sitting here hooked up to an oxygen converter (a bit noisey) which I am to use for sleeping and exercising ... hmmmm, which one do you all think will require more usage at this point? But the converter is a great little machine and I am actually not using it at this minute and am managing to watch my diaphragm move periodically. Am excited to see how much improvement there will be by the time I get back to the pulmonist in 2 weeks ... he seemed happy to hear breath sounds today and infectious disease doctor who got this whole final stage going is now off the case. I am eternally grateful for her aggressive approach to my case because I do believe that is what got me in the final diagnosis.

Thank each and every one of you for your prayers and encouragement, scriptural support, and caring and love from across the nation. I know that it has made a major difference in my situation.

Mary Ann
Last edited by FutureBack.Mom
G gotwood4sale10,000+ posts
Knock, knock, knock...

"Special delivery for FutureBack.Mom... From the guys over at that other forum."

quote:
To all of us guys...I was walking past the frilly pink forum and...uh...how do you say this...peeked through the window...and noticed that FutureBack.Mom is out of the hospital after suffering, evidently, from some very frightening and serious health concerns. She is doing reasonably well...that we are all grateful to know.

Please wander over and wish her well...if, like myself, you're uncomfortable to actually go in, then you can peek through the window as I did. Then report back here with your well wishes.

BTW: If you're going to peek in over there be careful if you choose the window near the northwest corner of the forum...I don't know what they planted there, it was dark when I peeked in...duh... but whatever it was it was all full of thorns and other pr1ckly stuff. It wasn't there last spring...that's for certain. I ruined my only really good Members Only jacket.

Take her some of these...or leave them under the window...they'll find them.






Seriously FBM...we're so very pleased to know that you are progressing...keep it up!
Last edited by gotwood4sale
SM stonewall's mom10+ posts
Hi Maryann,
I am so happy to hear that you are back home. I got real worried when you seemed to be MIA.
I didn't realize you were hospitalized. If I knew I would have showed up in the hospital with a pot of my homemade chicken soup if you were up to the visit.
Thank goodness they were finally able to give you the care you needed. Just say the word and I'll drive over the hill to bring you some cheer.
Regina
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