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    • #25270
      Bobbie Brown
      Participant

      Hi!

      I was admitted to the hospital July 23, and had a lung biopsy via bronchoscopy done on July 27th.  While in the hospital I had a full panel of blood work,  CT scan and x-ray done. They did mention ILD and RLD as my prognosis.  My question is… how long is the usual wait to receive test results from a biopsy done via bronchoscopy?  I have not started any treatment except supplemental O2, and my SpO2% usually drops to the high 70s when I walk to the bathroom or other rooms in the house. I have had better days where I can (with oxygen) get up and make supper. But I am on supplemental oxygen all day. So how long is not too long to wait? Does anyone have problems getting ahold of their doctor?  I have tried calling multiple times in the week and no results. I’m beginning to worry.

      Thanks for your advise… and for listening to me ramble and rant.

      Bobbie 💙🦋

    • #25271

      Hi @bobbie ,

      Thanks so much for writing but I am so sorry to hear of your hospitalization and the struggle to get your biopsy results. How frustrating!

      Interesting you just made a comment about getting ahead of your doctor – I am on call number 11 to try and reach the office staff and then my doc today. So aggravating! I’d keep trying, especially if the answers you’re seeking will ease your mind as well as potentially help your physical symptoms. Did they give any indication as to how long the biopsy results would take? I didn’t have a biopsy so I don’t have much personal experience to share but you have every right to follow up regularly until you get the results. Keep trying, as tiring as it is and keep your chin up. Feel free to connect with us anytime!
      Char.

    • #25287
      Karen Martin
      Participant

      @bobbie

      Hey, Bobbie,

      The doctors and hospitals I have been to also have email as part of their communications possibilities. I know it sounds counter-intuitive to go that route, but it might actually be quicker. I think that sometimes a doctor might have his nurse or PA send a quick response this way. Perhaps you could at least find out how long the wait may be before you can expect results. When you feel that there has been a “rush” to get you tested, having to wait for those results seems totally wrong! As Charlene said, keep trying. Good luck and I hope things are soon figured out for you.
      Karen

      • This reply was modified 9 months, 4 weeks ago by Charlene Marshall. Reason: tagging
    • #25300
      Bobbie Brown
      Participant

      Thanks Char and Karen for you advise and responses! Today I decided to go back to the walk in clinic. My o2 sat dropped to the 50s on Sunday while preparing for a shower and again last night while getting ready for bed. All while on 2 liters of o2. I decided I had waited enough and was definitely not getting any answers or any better.  They wanted to admit me to the hospital for more tests. Hopefully I will get some answers and a treatment course this time around.💙

    • #25303

      Hi @bobbie ,

      Thank you for writing and providing us a bit of an update on how you’re doing. Sounds like you might be admitted to hospital right now? If so, very sorry to hear but I hope you’re able to get some answers! Keep me posted and wishing you well.
      Sincerely,
      Char.

    • #25317
      Bobbie Brown
      Participant

      Char,

      I’m currently sitting in the hospital again. I was given my initial biopsy results  they were inclusive for a positive ild/ipf diagnosis or cause. They are going to do a open lung biopsy which is more invasive but does have better test results. Hopefully I will be able to have it done tomorrow 🙏 😌.  There is one thorasic surgeon here at this hospital who could do it,  or I would have to go through the other hospital in town with a whole consulting process and everything.  I’m really hoping they can do it here . One plus is they have talked about pulmonary rehabilitation so I’m excited to get that started so I can regain some of what I’ve lost and some of my new normal.

      • This reply was modified 9 months, 3 weeks ago by Charlene Marshall. Reason: formatting to remove code
    • #25321

      @bobbie, Thank you for the update though so sorry you’re going through this! Keep me posted on how you’re doing, I’ll be thinking of you. I hope you can have it done tomorrow too without having to move facilities. Hang in there and keep in touch!
      Char.

    • #25327
      Karen Martin
      Participant

      Hey, Bobbie. Sounds as if things are pretty intense right now. I hope you get the answers and help you are needing very soon. Love and prayers the procedure goes smoothly and that you don’t have to be sent to another hospital for it to be done. Hang in there.
      Karen

    • #25365
      Les Viegas
      Participant

      @bobbie

      Hi Bobbie,

       

      I’m sorry to hear about your wait to hear about the results of your biopsy and next steps.

      Typically, it takes 3-5 days for the biopsy results to be published. That is because there are a few steps in the process that involve a number of players. The surgeon has to extract tissue samples and send them to the lab for review. The technician has to prepare the samples for review by the pathologist who may have a backlog of samples to review. The findings have to be recorded and then reviewed by a senior pathologist who confirms the conclusions of the first pathologist (checks and balances to prevent flawed diagnosis and resulting liability). These results are then sent to the pulmonologist who ordered the biopsy who has to set aside some time for desk work to review various results for a variety of patients. It’s only then that the pulmonologist typically contacts you to convey the findings and layout the recommended treatment options. I know that the length of time can be very frustrating, but hospitals typically perform many biopsies and have to follow a process since there are so many players involved.

      As for a second biopsy, I would seriously caution against the need for another biopsy. They can be high-risk procedures and can lead to scar tissues that can affect lung transplantation surgeries. My recommendation to you is to get a second opinion from a center that does a lot of IPF work. Have you been told the reason why the first biopsy didn’t provide the needed information and why do they believe that the second one will be different?

      You mention that your O2 levels drop down to 50 lpm. That is a dangerous level to drop to and can result in serious damage to a number of your organs in addition to causing pulmonary hypertension which may make you ineligible for lung transplantation.

      You mentioned the biopsy being done to ILD and RLD – I believe that ILD is just a sub-set of RLD . Not sure why they wanted to learn more about it.

      Again, I hope you get a quick resolution of your diagnosis so you can get some urgent relief.

      Les Viegas

       

       

       

      • This reply was modified 9 months, 3 weeks ago by Charlene Marshall. Reason: tagging
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