LindaJoy Posted September 30, 2006 Report Share Posted September 30, 2006 Linda wanted me to update all of you. She's discouraged after her first doctor's visit at Mayo. She saw a gastro doc who specializes in esosinophil disorders. The told us that he thinks he already knows what's wrong with Linda: eosophagitis, irritable bowel and severe allergies, although he admitted that he doesn't know what would be causing all of her symptoms. Uh, that's why we're here. He said he could run us up a big bill with testing and will probably be at the same conclusion next week. We're very discouraged. We know, we've only seen one doctor so far, but I guess he didn't set a very good tone for the rest of the visit.She had a scope done yesterday, which was very hard on her, her blood pressure was running 70;s over 40;s last night after the scope, and he said that they didn't look at her entier system, so they ahve to do another one, along with a colonopscipy. Now, I'm back in Ohio (had to come home or lose my job), so she's at Mayo by herself, and the docotr wants to do two scopes on the same day, with her POTS. She can't be there by herself and have these tests. We're both very upset. Does anyone have any suggestoins?The gastro said that he saw that Linda had a very good workup by a neurologist at Cleveland Clinic. We said, "She's never seen a neruologist." He said well, who diagnosed her POTS? We said a cardiologist, and she doesn't do follow up care. He said, so I supposed you want to see a POTS spcialist, then? We said yes, so we're on the agenda to see Dr. Low. It will be a long wait, from what we're told.She is to see an allergist immunologist and she's to have some allergy testing done. This gastro doc is doing some testing for mastocitosis and some other diseases, too. Sorry to be so glum right now. We just didn't get off to a very good start, I guess.Tell more later.JohnAnyone here from Rochester who could visit Linda while she's there, or even stay with her for a few days during her scopes? Please let me know.John Quote Link to comment Share on other sites More sharing options...
jenwclark Posted September 30, 2006 Report Share Posted September 30, 2006 I'm so sorry you're off to a rough start at Mayo. You guys are certainly due for some good news. I hope the other doctors will have more to offer.I wish I could offer help or advice, but know that we're thinking about you both.Spike Quote Link to comment Share on other sites More sharing options...
juliegee Posted September 30, 2006 Report Share Posted September 30, 2006 Hi John-I a relative newbie, but I've followed Linda's saga. Have you suggested or asked the doc's to look into mastocytosis? It seems to connect the dots and explain all symptoms. Best of luck.God Bless-JulieLinda wanted me to update all of you. She's discouraged after her first doctor's visit at Mayo. She saw a gastro doc who specializes in esosinophil disorders. The told us that he thinks he already knows what's wrong with Linda: eosophagitis, irritable bowel and severe allergies, although he admitted that he doesn't know what would be causing all of her symptoms. Uh, that's why we're here. He said he could run us up a big bill with testing and will probably be at the same conclusion next week. We're very discouraged. We know, we've only seen one doctor so far, but I guess he didn't set a very good tone for the rest of the visit.She had a scope done yesterday, which was very hard on her, her blood pressure was running 70;s over 40;s last night after the scope, and he said that they didn't look at her entier system, so they ahve to do another one, along with a colonopscipy. Now, I'm back in Ohio (had to come home or lose my job), so she's at Mayo by herself, and the docotr wants to do two scopes on the same day, with her POTS. She can't be there by herself and have these tests. We're both very upset. Does anyone have any suggestoins?The gastro said that he saw that Linda had a very good workup by a neurologist at Cleveland Clinic. We said, "She's never seen a neruologist." He said well, who diagnosed her POTS? We said a cardiologist, and she doesn't do follow up care. He said, so I supposed you want to see a POTS spcialist, then? We said yes, so we're on the agenda to see Dr. Low. It will be a long wait, from what we're told.She is to see an allergist immunologist and she's to have some allergy testing done. This gastro doc is doing some testing for mastocitosis and some other diseases, too. Sorry to be so glum right now. We just didn't get off to a very good start, I guess.Tell more later.JohnAnyone here from Rochester who could visit Linda while she's there, or even stay with her for a few days during her scopes? Please let me know.John Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted September 30, 2006 Author Report Share Posted September 30, 2006 Mack's Mom, Yes, many docs have suggested that Linda has mastocytosis, but her bone marrow biopsy was negative, so they ruled it out. The doc here at Mayo said he's gonna do some testing for it. What he means by that, we don't know.Can someone have mastocytosis with a negative bone marrow biopsy? Linda thinks you can have mast cells in your skin or your organs and not in your bones and still have mastocystosis. Anyone know? She also thinks that she has a mast cell activiation disorder, not full blown mastocytosis, but no doctor has verified tat yet. Again, thank you so much for your support. You're a good group of friends for Linda. John Quote Link to comment Share on other sites More sharing options...
Poohbear Posted September 30, 2006 Report Share Posted September 30, 2006 John,I know how hard it can be on both you and Linda to have her up there by herself! I do have a suggestion that worked for me.#1 Look at your insurance policy to see if you have coverage for any home health services. If you have this coverage look in the rochester phone book under home health agencies (check to make sure the agency you select is accepted by your insurance) call and explain your situation and see if they can help.#2 Ask to speak with a Medical Social Worker or Patient Advocate office and tell them you need to find someone that can be with your wife.If your insurance does not pay for home health care then you may want to contact a company such as Home Instead Senior care or some other similar type company to see if you can pay them to sit with Linda some. They will NOT provide nursing care but they can be with her, push her in a wheelchair, help her get meals, sit with her during wait times at the clinic etc. Good luck! Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted September 30, 2006 Report Share Posted September 30, 2006 Hi John,I'm pretty sure that under the family medical leave act, your time with Linda is protected by law. You may want to check this out. Like I said, I'm pretty certain you can't lose your job because you're taking care of your sick wife. Also, the suggestions of checking for nursing care and calling social workers is a good one. I wish the best for both you and Linda!-Lauren Quote Link to comment Share on other sites More sharing options...
mom4cem Posted September 30, 2006 Report Share Posted September 30, 2006 Sorry to hear the gastro visit was not helpful. I also would second the family medical leave act as well as contacting a patient advocate in the hospital. To find the right doctor who can see that some don't always feat neatly in the box, that there is a gray area where many fall and seem to get lost in. If it is not a textbook case, some can't see outside the box. I hope Dr. Low will be able to give some insight and have some other suggestions. Please send her my support and hugs. Quote Link to comment Share on other sites More sharing options...
Poohbear Posted September 30, 2006 Report Share Posted September 30, 2006 John,You probably qualify for FMLA time IF the following applies to your situation however, the employer does not have to pay you for this time so that is another issue as well. #1 You have to have been employed with your current employer for 12 months and worked at least 1,250 hours.#2 You only have protection of FMLA if your employer has at least 50 or more employees and those employees live within 75 miles of the worksite. Also the FMLA allows you up to 12 weeks but if this time is taken intermittently, you will need to carefully and closely monitor both hours and days missed from works to ensure the employer does actually honor 12 weeks/60 work days. Some employers will even count hours instead. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 30, 2006 Report Share Posted September 30, 2006 I wish I could help. I am sorry the first appointment was so discouraging and that she has to have so many uncomfortable/debilitating tests. Hope she can see the POTS specialist in a matter of days.Katherine Quote Link to comment Share on other sites More sharing options...
Maxine Posted September 30, 2006 Report Share Posted September 30, 2006 Just sending good wishes for Linda to get the help she needs.It surprises me how they can just schedule a colonoscopy--endoscopy for someone in her condition with such low BP---and not think twice about her aftercare when she is there alone.My surgeon insisted I be admitted if I have the regular colonoscopy----because of low BP readings in her office. She opted for a virtual colonoscopy--CT scan first---no sedation required.It sounds like the Doc wasn't very sensitive to Linda's situation---- It's especially upsetting since she is going there hoping for answers that no one else can seem to find. I really hope it gets better for her---I'll be praying for her.... I think Poorbear has some good advice there......... Maxine Quote Link to comment Share on other sites More sharing options...
labas_2u@shaw.ca Posted October 1, 2006 Report Share Posted October 1, 2006 John, does the hospital there have a pastoral care department?These people will come and visit people from out of town in a both a religious and non-religious way depending on what the patient wants. They are usually tied in with the Ethics committee of hospitals and they are great advocates for out-of-town patients. They will also inform you and help you with the problems out-of-town patients usually encounter. Good luck and please tell Linda to hang in there!Maggs Quote Link to comment Share on other sites More sharing options...
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