Jo C. thinking of you today

JeriLynn66

Jo, it is so good to hear from you and we all continue praying for you and yours ❤️

Jo C.

Stunned me too, M1. ALL of the Rheumatologists - not a single one sees patients when hospitalized.

Most all specialists and even many primary docs are going through a call and answering disaster. One makes a call to an MD and one goes through a recorded "menu" of blah, blah, blah AND then you do NOT get to speak to the MDs office; one must speak to a "navigator" (a clerk) who takes your query or info or need for an appt. and the navigator contacts the MDs office and does whatever . . . IF needed, then the navigator has an office staff member call the patient but it often takes all day . . . . Med centers are putting these huge groupings of primaries and specialists together.

AND I am NOT an HMO or Managed Care; I am a private patient with private insurance. Still some independent docs out there, but not many and it is happening with SO many med centers, Medicine is coming to a dreadful state. Then one gets a hospitalist to follow and manage them when in the hospital; not their own doctor. Some trying to be a mini Kaiser and it is all about $$$$$$$$. And control..

We pay for a Concierge MD; can contact office easily; same day appt even available if needed; and best of all, the two docs follow their own patients when in the hospital. Sanity and worth the money. I feel sad for the loss of good medicine practiced in a good way . . . .

ronald71111

Jo C, still have you in my prayers! I know from experence how frustrating being out of breath can be. I thought my pulmonologist visit was enough, but I am also scheduled for a full pulmonary function test in January.

I hope and pray better days are ahead for you!

Ron

White Crane

Praying for you.

BethL

Jo, I am so sorry! I will continue to pray for you and David. As a side note, I too am dealing with plumbing issues but not as severe as David's. It is hard, too, when you don't have any helpers. Since my hubby is in a rehab center, I only have helpers (for house and yard things) that I pay (other than my son, but he is busy with work and 4 young children). I hope you can find someone to help you out and give your DH some relief. May God give you comfort, good sleep and peace. And better health!

Beth

Lorita

Hi Jo, you are missed on the friend's thread but thankful we can hear from you on this one.

Do they have any idea what might have caused your illness just out of the blue? Had you taken the last covid shot and, if so, was it the kind you had taken before? I guess we just never know what will happen to us and when. Have to enjoy each day as a gift from God.

Best wishes for a quick recovery for you and your son. I hope your husband is continuing a good recovery from his back surgery. Sarah seems to get the runaround, too, for appointments. Something is broken in the medical world.

Take care and rest as much as you can. All three of you are in my nightly prayers.

telinde

I’m sorry you are having a struggle Jo. I certainly hope you find a new doctor soon, who can direct you to the right specialists. You are in my prayers and on my church prayer chain. Hang in there. It will get better.

jfkoc

Thank you for the update. We really do want to hear from you.

Two suggestions; get a walker to help you and use your Long Term Care insurance.

You do need to get help in. Call something like Home Instead. They could come twice a week, do your shopping and cook.

Can you hire a driver to get you up to a hotel near the UCLA clinic. Spend the nights before and after your appt(s). This is when you use your savings!!!!!

Pulmonary Fibrosis Foundation | Find Medical Care | Pulmonary Fibrosis Foundation

Interstitial Lung Disease - Los Angeles, CA | UCLA Health

I would call. If they are like JOhns Hopkins , Mayo etc they will help you with making plans like hotel as well as appts. At least hear what they have to say.

Pulmonary Fibrosis Foundation | Pulmonary Fibrosis Foundation

You probably have looked at all of these.

How can we help????

Judith

Lorita

Long term care insurance! Had not thought about that. I had Home Instead for my sister and really liked them.

jfkoc

You posted again while I was writing.....

Why isn't your concierge Dr. handling appointments for you???

I have to say that I have not run into the problems you have discussed when taking care of Dick or now. I guess we are lucky here in OK.

Iris L.

Jo C, did you see my post about my own Pulmonary Doctor that I can recommend?

Ask your doctors if laryngopharyngeal reflux can be contributing to your chronic cough and coughing after meals.

Judith has a good idea about spending the night in a hotel before a UCLA consultation appt.

If there is anything I can do to help you, PM me.

Iris

ladyzetta

Dear Jo,

Iam so sorry you're going through this. You and your family are in my prayers. Please remember I only live about 20 miles from your son, and I would be happy to help him if I can. Hugs to you Zetta ❤️

Quilting brings calm

Jo- I totally understand your frustrations with the health care call centers. We are in the same boat here as pretty much every doctor and specialist is affiliated with a practice run by one of the hospitals or a large clinic. You can’t get to a nurse line - they will call you ‘sometime’. No same day appointments either- go to urgent care where they know nothing about you.

our water is currently shut off as the village called today and told us we’d used about 12 times our normal monthly usage. A plumber is coming out tomorrow to ‘give us an estimate’. We called a second one to see if they will actually fix it tomorrow. Told the second one first come, first serve. We did determine ( via the food coloring test) that one of our toilets is leaking from the tank to the bowl. No idea what else might also be wrong as we couldn’t find standing water in the house or the yard.

Mint

(((🙏🏻🙏🏻)))💛💛

Jo C.

Dearest friends; I am on my way back to being admitted to the hospital. My MD wants me a direct admit rather than thru the hell of ER; so I will either be going today or tomorrow; the huge med center is as usual, full. I have so many more new and some repeated diagnostics to be done and I am in a terrible state - far too much a taxing effort for me to go from different place to place to place for each diagnostic, so I will be in the hospital where it can all be done in one fell swoop without killing myself. Yesterday was the worst day ever. Took maybe fifteen steps and open mouth LOUD gasping and striving to get air and had to sit down . . . any ambulation was awful. Had to walk short distance; sit on chair wait for recovery and make the next foray doing the same over and over until I could get out to the car to get to the M.D. appt. UNBELIEVABLE - just a few short weeks ago I was absolutely fine. Have crackles in both lungs, pulse ox low, blood pressure a least liked me; 125/65. Got worse so fast - need the O2, so pulmonary function testing necessary to have insurance cover. I an not a candidate for a lung transplant.

The situation here with the huge med center mega grouped clinics is the problem. Most all specialists and many primaries are part of it and they are salaried! Can you believe? Kind of like a pseudo Kaiser model; just not done well at all but profitable for the big guys. Even the good private MDs who are not part of that debacle also have problem issues accessing the specialists. The road to medical hell . . . .

Iris; thank you, I did check and research that MD and found it was not a good fit for me, but thank you. There seems to be no reason at all for my having this . . . . which is why it is called "ideopathic.".

Judith; thank you very much. How can you help you ask? You are doing it dear friend. The support is awesome even though I know it is off topic so to speak. For those who pray; that is deeply, deeply appreciated. As for your good advice, I do indeed have a walker and sure do use it. Had to. I will do the initial work with the locals; it has only been a couple of weeks since this all slid downhill and then I think I will be seeing the UCLA group. Highly specialized and so much there. However; it is not just one or two visits - one would need ongoing care there long term and that is the four hour hell drive to get there, especially when one is unwell.

The friends I had; several have passed away; couple of others far out of state no more contact, so that active support no longer there. So many friends were in the workplace and now all scattered. Even though we have not met personally; the support here is wonderful and is truly meaningful to me.

Interesting to me is that the UCLA team and some others are looking at the microbiome in the gut as being important in all of this. There is an unexplored universe in the gut that has so much power over the body and science has only "recently" have given this the necessary attention.

We have no long term care insurance. We applied when younger; I had a note in my med record that I had arthritis in one knee; did not hamper; still did sports, etc. Denied. DH has type 2 diabetes under good control - Denied. On our own.

What is really noteworthy is that I have a $500 deductible for my private insurance and have NEVER met the deductible in all the years I have had it, ever - had really good health; but I sure have met it this year.

Got a little go bag packed for the hospital, ready to go - my poor, poor dear husband is exhausted. When out of house need a wheelchair to get across parking lots into buildings; it is not good or easy for him; he is only four months post back surgery. I can do nothing in the house at this time, what a terrible turn around this has wrought.

What is curious is how fast it happened; that it is progressive and not curable. Who'd a thunk it, not me. DH said if I had been a smoker and a drinker and abused drugs I'd probably be just fine - scary thought.

You all are such kind, compassionate people; I feel the caring and love - it buoys me up. I will be thinking of all of you, with my gratitude and deep affection; your friend,

J.

White Crane

Dear Jo, the breathtaking speed of all that has happened to you tears at my heart. I am praying for you to find an answer as to why this happened and for you to heal. You are a very special and important part of this forum. Sending virtual hugs and many prayers.

Brenda

jfkoc

Hospital admit...good to stay there for all of tests. I felt certain your Dr would handle this for you.

UCLA...they may have Drs associated with the clinic at satellite clinics all over the area. You can find a driver.

Take your Kindle and please update as often as is possible!!!!

Mint

JoC think of you many times each day. Know this is pretty overwhelming and tough.

Know this is also very overwhelming for your husband also and that you worry about him. I am so very sorry.

🙏🏻🙏🏻🙏🏻 for you, your family and those caring for you.

M1

Praying for you Jo.

Lorita

Many prayers for both you and your husband. This is unbelievable that if happened so fast and why. We'll be there for you in spirit.

Iris L.

Jo C, I'm sorry that doctor was not a good option for you. It's good that you are back at the hospital to get more evaluation. I'm still praying for you and David. Try to get some rest if you can!

Iris

Jo C.

Update: Our dear son, David had a stroke yesterday and was admitted to ICU. He is now in step-down. It came from his vasculitis and affected his left lower extremity and could not walk. This very healthy, very fit person has sustained so much in such a short period of time. He is also not responding to meds as quickly as he should be for the relapse of vasculitis which had had healed from three years ago.

As for me; worse. Could not get a bed in the med center. Last night they had a full hospital with 30 patients in ER and 103 waiting in chairs! Dr. trying valiantly to get me admitted as a direct admit but nothing yet and I feel so much worse. Tried to shower this a.m. and was not able to do so. Got to go and check and see if bed availability will be today.

Thank you again for your support, your caring and your prayers. This a very real group of very really lovely people and I love you all from the heart. I am blessed to have your caring support.

J.

Marta

Jo - might I be close to David? I live in Sequim, WA. I think you know it.

jfkoc

Sending love and a viral shoulder to lean on and you know you are in everyone's pockets.

loveskitties

Dearest Jo,

Sending prayers for you and your son.

I know how much stress it is adding to your own health to not be able to be at his side, as I went thru similar circumstances with my own son many years ago and was a continent away.

Wishing there was more that we, your virtual "family" here, could do for you and yours.

Hugs and love to you and your family as you go thru this very difficult time.

Jo C.

Hello there Marta, he is not far from Medford . . . they have a large hospital with 378 beds and are completing adding a six story tower to it for additional beds. Quite a setup.

Hope Sequim and all is doing well for you and also hope your little fur friend is still doing well. Always great to hear your voice.

J.

eaglemom

This certainly isn't the news any of your porch family wanted to read about. Know that without a doubt you are miss, loved and certainly many of us are praying for you and David.

Mint

JoC prayers continue, im so sorry. Know you do not want to go this route but you appear to be in a lot of respiratory distress. What you can do is call the rescue squad for respiratory distress. Can only speak for the area I live in, but that will get you Triaged into an ER bed and into the hospital ahead of others that are not emergency patients. It still may take a day or two to get an inpatient bed but you will get one. Where as if you’re at home trying to get a bed you’re not gonna be triage ahead of anybody probably. Just something to think about as I said, I’m not sure how it works in California.

jfkoc

Would some oxygen help? I am sitting here with two machines in the attic....would that I could run them over to you but your Dr could order one, yes?

Lorita

Jo, seems like when it rains, it pours. Sad news about Davis's stroke. May HS recover quickly. Sounds like good advice from Sara, at the least you would get some respiratory relief. Just can't imagine what you're dealing with physically plus the worry about your son. Do wish we could give physical help. Rest, rest and rest.