1/27 Yum HAS ACROMEGALY AMPS 574 10L +3 508 +5 427 +8 341 PINK

Discussion in 'Lantus / Basaglar (glargine) and Levemir (detemir)' started by MJW, Jan 27, 2018.

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  1. MJW

    MJW Well-Known Member

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  2. MJW

    MJW Well-Known Member

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    The acromegaly test came back, but we are still waiting on the IAA.
    The vet wrote:
    "I had to find a reference to convert the lab's nmol/L into ng/mL (the way I learned about the test), and Yum's result is VERY consistent with hypersomatotropism. The old units of measurement were ng/mL, and if the cat's IGF by RIA was over 1000, it was significant. Yum's is 3183ng/mL."
    She indicates the next step is MRI/CT. Is that correct?
    I should start her on cabergione, right? @Wendy&Neko @Bronx's dad
    When I calm down I guess I will start reading about acromegaly. I put it off before, because it was freaking me out.
    My poor love.
     
  3. Stacy & Asia

    Stacy & Asia Well-Known Member

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    :bighug::bighug::bighug::bighug::bighug: I'm so sorry, MJW. I'm glad you have an answer though and can figure out the next steps. We are so lucky to have @Wendy&Neko she has kept up with all of the research and is such an amazing resource. I hope Yum can get in to better numbers soon. Sending lots of love for you and Yum :bighug::bighug::bighug::bighug:
     
  4. LuvinThisPig

    LuvinThisPig Well-Known Member

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    Oh, honey I am so, so sorry! It is not a diagnosis that anyone would hope for, but at least you know where to go. I have been doing a ton of research on acromegaly and treatment options, so if you have any questions please ask. However, I am sure there are a ton on here that know far more than I. But, perhaps, we can learn together! :bighug::bighug::bighug:
     
  5. AZJenks

    AZJenks Well-Known Member

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    Feb 3, 2014
    Just breathe. Yum is still the same sweet kitty that she was before the diagnosis, except now you know why she needs more insulin than the average cat. You're going to be in good hands with all of the great people who are knowledgeable about acromegaly here, and I wish you and Yum all the best as you begin this next phase of your journey. Sending lots of support and positivity your way!
     
    Last edited: Jan 27, 2018
  6. Tracey&Jones (GA)

    Tracey&Jones (GA) Well-Known Member

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    Sending some supporting hugs as you work through this. :bighug::bighug::bighug:
     
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  7. Alicia & Maggie (GA)

    Alicia & Maggie (GA) Well-Known Member

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    I'm sorry about Yum's diagnosis. Yum is lucky to have you because you will do everything you can to help her. :bighug:
     
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  8. MJW

    MJW Well-Known Member

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    I guess my steps are
    1. confirm DX with CT or MRI (if she is healthy enough for anesthesia)
    2. start cabergoline (maybe my vet will make me wait for an appointment with a specialist)
    3. find a place for SRT, if she is healthy enough for anesthesia. The closest place was wiped out by Hurricane Harvey. The facility was underground. They have relocated but they are not set up for much.
    4. I read a place in Los Angeles will surgically remove the pituitary gland

    I thought her chin looked swollen in August. Maybe that was the acromegaly.
    Yesterday she let her tongue hang out of her mouth for a while.
    At one point in the past 6 months I felt her paws looked bigger.
    Maybe it explains the sudden appearance of a heart murmur in August, although the cardiologist thought it was just due to repositioning with old age.
    Maybe it is the cause of her CKD.
    I want to move fast of course because of the systemic damage that is probably occurring.
    Maybe her abdomen looks enlarged when I look at her from above.
     
  9. Marje and Gracie

    Marje and Gracie Senior Member Moderator

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    ((((MJW)))))

    I am very, very sorry about the dx. But there are two positive aspects:
    • You now know what you are dealing with and what options are available. Take time to explore them and don’t rush into something without knowledge. Cabergoline has worked for some but not others. There might be other/better options for Yum.
    • The most knowledgeable person about acromegaly, that I am aware of, is on this board.....Wendy. She has stayed on top of the treatment options, the research, etc.
    I know I’ve shared Crystal’s SSs with you. Keep in mind that Suki got her looking so great just through using Levemir and R; she was not able to have any treatments done for Crystal. So there is always hope, especially if you have access to treatments.

    :bighug::bighug::bighug::bighug:
     
  10. Steph & Quintus & L & O

    Steph & Quintus & L & O Well-Known Member

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    :bighug::bighug::bighug::bighug::bighug: lots of hugs, sad but at the same time relieved for you that there is an explanation! I hope the road ahead only becomes brighter.
     
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  11. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    So sorry about the results, but the picture is becoming clearer with information. Give Yum a little kiss from me, she's no different than the cat she was yesterday. :bighug:

    Do you have the results in nmoL/L? It's positive above 100. The vet didn't need to convert it, just makes it confusing. But it is positive above 1000 if you got the test done at the Royal Veterinary Clinic - which has done most of the recent publications, hence the vet's confusion.
    If you like spending money, sure you can. If your vet is using the international level and positive is above 1000, there's a pretty good chance you don't need the CT/MRI to confirm. I never got the CT scan until part of the SRT process. There are some kitties that show false negative on IGF-1, but typically if tested within 75 days of starting insulin. Yum has been on insulin a lot longer. With the spreadsheet and IGF-1 number, it's unlikely to be false. And a CT/MRI involves anethsesia. I like to avoid that unless there is a good reason. A number of our acros have or develop heart issues.

    As far as treatments - you don't need to rush into any decisions. Take your time. Read, digest, ask questions. :bighug: Treatments are a trade off between money, ability to travel, and what's near where you live. Cabergoline wasn't a possible treatment when Neko had her diagnosis. Some kitties have had success with it, some not as much. But it's a cheaper solution than anything else out there. Paul had to stop cabergoline before Bronx had SRT. Some people don't treat their acros, other than getting them to a good dose of insulin and managing symptoms as they arise. That's the most important thing you can do, regardless of doing anything else as well. At some point, Lev may be a consideration.

    By the way, the place in LA doesn't do the hypophysectomy anymore, it's now in Washington State University. Not heard a lot of success from there. London England is the place to go with a good track record.
     
  12. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    One more thing, not all acros show all symptoms. Only 35% of acros show symptoms on diagnosis. For years, Neko's most noticible symptom was one teary eye (soft tissue growth blocked the tear duct). And that was it. No face changes, very little change in her body, no large paws. She did get severe arthritis, and bony growths were visible when she had x-rays, even dental x-rays.
     
  13. MJW

    MJW Well-Known Member

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    Mar 29, 2017
    Okay. Maybe scratch the MRI/CT
    I want to get rid of the tumor, not just control the BG.
     
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  14. MJW

    MJW Well-Known Member

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    @Bronx's dad
    For how long did you have to stop the cabergoline before you did the SRT?
     
  15. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Getting rid of the tumour means hypophysectomy (surgical removal). Stopping the tumour or killing the tumour cells (radiation therapy) can take up to 2 years to be effective. Radiation neuters the tumour cells, so you have to wait out the cell life cycles. Hypophysectomy wasn't available when I looked at options the first time. It was the second time, but WSU didn't have success stories and the experience of the surgeon plays a lot in the success of the operation - a chance I wasn't willing to take. And I wasn't going to fly her to London. But that was over 2 years ago. You can always contact WSU and ask for recent references.

    Cabegoline seems to control the growth hormone output - hence the need for less insulin. Pasireotide has a better success rate in RVS studies. It too is a medical solution, but a years worth of treatment will pay for a trip to London and back. It's really expensive.
     
  16. Jill & Alex (GA)

    Jill & Alex (GA) Senior Member Moderator

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    Please don't forget to take time to breath.

    The diagnosis is crappy and no doubt a blow to your gut, but Yum doesn't know what she has. She wants the same love and attention from you today as she did yesterday. Wendy and the other high dose parents will surround you with their expertise, suggestions, advice, and information. Everyone will help as best we can.
    :bighug::bighug::bighug:
     
  17. MJW

    MJW Well-Known Member

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    Mar 29, 2017
    A. Drugs
    Do the drugs stop the growth of the tumor? I guess not. I read it can cause brain damage/neurological symptoms if it gets too big.
    I guess they do stop the systemic issues, though---right?

    B. Surgery
    There is a 6 month rabies quarantine on cats when you take them to England, right? How would that work for hypophysectomy? I've heard people go in through France.
    Has anyone on the forum had a hypophysectomy done? I will look into WSU I guess. Which one? I think I have a nephew enrolled in one campus...
    I think we want the surgery, if I can get a good surgeon. It is a long recovery.

    C. SRT
    Do they do SRT at Texas A&M? When I google I think I see CSU and some place in North Carolina.

    What should I be doing differently with Yum's dose increases and R?
    I am spending $288 on a vial of insulin.
    Will Mark's Marine Pharmacy ship to the USA?

    Lots of stress.
     
  18. Chubba (GA)

    Chubba (GA) Well-Known Member

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    Apr 30, 2017
    So sorry for the acro diagnosis.
     
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  19. MJW

    MJW Well-Known Member

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    Mar 29, 2017
    She doesn't want that much love and attention lately. She wants food and food and food and water. She is more lethargic.
     
  20. LuvinThisPig

    LuvinThisPig Well-Known Member

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    Dec 8, 2017
    Absolutley... I get all of Pig"s insulin there now. They are fast and reliable... And incredibly friendly... Just make sure you have a copy of the script in hand.
     
  21. Bronx's dad (GA)

    Bronx's dad (GA) Well-Known Member

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    Nov 30, 2016
    So sorry about the diagnosis, Bronx welcomes Yum to the acrocat gang :bighug:

    I was told by RVC that cats should be weened off of cabergoline, so I started to lessen the dose a week or two before the SRT. His numbers were improving at that time and who knows where his numbers would be if we continued the cabergoline. Besides SRT, there is also another procedure called Cyberknife which is more precise than SRT, but also more money. Some kitties have done great on Cabergoline, especially with the higher dose which Bronx didn't start at until about halfway through.
     
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  22. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Drugs will slow or stop systemic issues. There has been a cat go off of insulin with the long lasting form of paseriotide too. Yes, the tumour if it gets too large can cause issues. It's something I've seen here just once. I had two CT's done of Neko. The second CT 3 years after her first SRT, the tumour was much smaller, and it was described as "tiny" the first time (0.146mm). Size of tumour has no relation to IGF-1 number. Kitties undergoing SRT a couple weeks before her had pea sized tumours with half the IGF-1 number. And both of them needed higher doses than Neko did. ECID. So true with acros.

    I have no idea what the rules are for taking cats to England. They have had people go there from Europe. You could contact RVC and see if they know. It's been ages since someone here had a hypophysectomy done in the US - I'm sure the success rates are better now. We did have one person who posted here, went to WSU (Spokane), but her cat had some bleeding from surgery. I didn't hear how that ended up. Here is the story from an English member who had Louie treated at RVC. The surgery itself is cheaper than SRT, but typically cats have to stay longer to recover, up to two weeks. SRT is not invasive.
    NCSU is a very good place for SRT. Dr. Kathy Lunn is very knowledgeable about acromegaly. She moved to NCSU from CSU just before we went to CSU, which is the place that had the most SRT experience at the time we went. This post lists some places to get treatment. I don't know about Texas A&M. There are some private clinic chains with SRT, this is one. I don't know of a list of current places to get SRT. Maybe your vet can help? Or an IM vet?
     
  23. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Feb 28, 2012
    I see pink. :) Two days in a row. And that's without R in the picture.

    By the way, forgot to answer your question about dosing above, but increments are by 1.0 units instead of 0.5 units once the total dose gets to 10 units. If you are seeing low blues, you might increase by 0.5 units, or "fatten" the dose. We'll wait to see the results of the IAA before seeing if there are more tweaks to dosing.
     
  24. MJW

    MJW Well-Known Member

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    Mar 29, 2017
    Do the drugs slow tumor growth? Good to know they slow the systemic issues. You think the paseriotide is better than the cabergoline? I read paseriotide causes diarrhea. The cabergoline side effects were even scarier.


    The quarantine stopped when they joined the EU. I wonder how likely a candidate Yum is for surgery? She turns 16 in March and she has CKD.

    Thanks!
     
  25. Tricia Cinco(GA) & Harvey

    Tricia Cinco(GA) & Harvey Well-Known Member

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    I just wanted to add my words of support. The diagnosis is a gut punch, I'm sure, but now you know what you're dealing with and can make a plan. You are fortunate to be a member of FDMB, because we have some of the most knowledgeable people when it comes to acromegaly. Wendy and the others will be a huge resource for you.

    Just take some breaths and read everything that's been said here. Then breathe some more and read it again. You are still, no doubt, in shock. Yum didn't get acromegaly overnight and you aren't going to "fix" anything overnight, either. Weigh all your options and take the time to make an informed decision.

    Vent here, let the stress out. We understand. You aren't alone. We've got your back. :bighug::bighug::bighug:
     
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  26. Sienne and Gabby (GA)

    Sienne and Gabby (GA) Senior Member Moderator

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    I want to echo what Jill said. Breathe.

    Yum is exactly the same cat she was yesterday and all she cares about is your attention. Give yourself a chance to weigh all of the options. Knowledge is power and it will empower you to do what's best for Yum.

    You you are even remotely considering a surgical intervention, the one hugely important question to ask is how many of these procedures has the surgeon done and what were the outcomes. With any kind of surgery, you need a vet who has had a tot of hands on experience.
     
  27. Bobbie And Bubba

    Bobbie And Bubba Well-Known Member

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    Jun 15, 2015
    I am so sorry that Yum got this DX but, I am so glad you found this forum where all the acro peeps can help to guide you. Sending lots of cyber hugs. :bighug::bighug::bighug::bighug::bighug::bighug:
     
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  28. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Honestly, the size of the study groups was not very large. And not been done long enough to provide long term data on effects. Some cats had to stop the paseriotide study due to GI issues. I seem to remember that was for the daily version of the drug and the long term one (once a month dosing) was better that way. Some people on cabergoline have mentioned loss of appy, but not much else.

    As for RVC, I wonder what Brexit will do. Hmm. The ability of a cat to undergo surgery will likely depend on their heart and what stage the kidney disease is in. Ditto for SRT. A large part is how they respond to anesthesia. Neko had CKD for her second SRT (her tumour came back after 3 years). They wanted a recent echo and bloodwork before proceeding. I, and many others, have found RVC really good at responding to emails. You contact them at the diabetes remission clinic. If you are remotely thinking of surgery, I would ask them what are the medical considerations for undergoing surgery. They know way better than us. We had people with heart kitties have SRT at CSU. They just needed to stay overnight at the clinic instead of going back to the hotel during the night. Surgery kitties stay at the clinic.
     
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  29. MJW

    MJW Well-Known Member

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    Mar 29, 2017
    I gave her the .25R at AMPS+11.
     
  30. MJW

    MJW Well-Known Member

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    I thought I read on a google overview that SRT was one treatment, one day. But I guess you and @Bronx's dad both did 5 treatments at once, one a day? Lots of anesthesia.
     
  31. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    "Traditional" SRT is 4 days of anesthesia. One day for the CT scan (or MRI if needed), plus 3 days for the radiation therapy, one treatment per day. Neko's second time, she only had 1 day of radiation therapy due to her heart, so a total of 2 days of anesthesia. You might want to read Julie's Punkin's SRT Journey on the high dose forum. NCSU offers 1-3 days of radiation. CSU recommends staying 5 days, sometimes kitties need a day off in between for recovery. The CT scan day was the longest anesthesia. Radiation days were pretty short.
     
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  32. Chris & China (GA)

    Chris & China (GA) Well-Known Member

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    Absolutely! Marks is where most of us in the US are buying from (they also carry Levemir if you decide to try it)
     
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  33. Noah & me (GA)

    Noah & me (GA) Well-Known Member

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    Dec 3, 2016
    @Wendy&Neko just wanted to quickly sneak this in. I think you're a Serena Ryder fan. There's something about her on W5 tonight, probably repeated tomorrow.
    Sorry for the intrusion everyone.
     
  34. Ter and Sally

    Ter and Sally Member

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    Jan 9, 2018
    Love you Yum. Stay strong MJW.
     
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  35. Ella & Rusty & Stu(GA)

    Ella & Rusty & Stu(GA) Well-Known Member

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    Jan 11, 2010
    Sending our very best wishes for Yum to do well with any of the treatments you decide on. As the others have said, take time to do your research. Apparently there are many new developments in the field. We are all very lucky that we have experienced people here who keep informed about what is happening.
    Lean on your friends here for support. Some of us are only "cheerleaders", but we all want the best for Yum and you.
    :bighug::bighug::bighug:
     
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  36. Marje and Gracie

    Marje and Gracie Senior Member Moderator

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    Here is the info on bringing a pet into the UK from the US. It appears that, as long as you have a pet passport, rabies vaccination, and microchip, Yum would not have to be quarantined.

    Here’s a post Wendy recently did on the cost of paseriotide.

     
  37. suki & crystal (GA)

    suki & crystal (GA) Well-Known Member

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    I don't look in much these days but I do keep on eye on any of the acro kitties and I was so sorry you finally got confirmation of Yum's acro, but at least you now know the reason behind Yum's resistance. I wish you the very best of luck with whatever treatment route you decide to go down but in the meantime, listen and learn from the very experienced team here (Wendy and Julie for acro, Marje and Sandy for R dosing), they provided invaluable support for me and Crystal when we arrived here in panic mode after Crystal's dx and their knowledge and expertise allowed us to have more precious time together. The RVC in London were also first class in answering many queries by email; they have a specialist acro clinic and are probably the best in the world, so call on all the experience available to you to enable Yum to have a good quality of life. Many hugs at this stressful time to you and your sweet girl.:bighug::bighug::bighug:
     
  38. Bronx's dad (GA)

    Bronx's dad (GA) Well-Known Member

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    Bronx's SRT was 5 days of radiation. Brought him in a month ahead for an x-ray of the heart and a cat scan, so 6 total days of anesthesia. They did recommend an ultrasound too on that day for a better look at the heart since the x-ray did show some enlargement from the acro.
     
    Last edited: Jan 28, 2018
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  39. Steph & Quintus & L & O

    Steph & Quintus & L & O Well-Known Member

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    Dec 9, 2017
    The conditions for import are still complicated. I'm not sure where they classify the US, but you may have to start the process 6 months before import. There are only certain routes you can come in from, and unless it has changed, if it's by air the animal has to be registered cargo (expensive). Do make sure to really check up on all this early in the process, before making any big decisions.
     
  40. Steph & Quintus & L & O

    Steph & Quintus & L & O Well-Known Member

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    Last edited: Jan 28, 2018
    Reason for edit: I was wrong!
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  41. MJW

    MJW Well-Known Member

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    Mar 29, 2017
    Last time I looked, Bronx's kidneys were in better shape than Yum's. I am also concerned the cardiologist might have been wrong in dismissing her heart murmur last August as nothing. I hope the vets can give me true educated opinions on how well she could handle repeated anesthesia, surgery, and even air travel. I won't put her in a cargo hold. Yum's sister passed away on the operating table because she wasn't healthy enough.
     
  42. MJW

    MJW Well-Known Member

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  43. MJW

    MJW Well-Known Member

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    Mar 29, 2017
    You are strong to keep looking in on the forum. Sometimes it makes me cry.
    I have looked at Crystal's spread sheet and I have seen what you went through with her.
    Yum has had diabetes for a year. In her first bout, she went OTJ after a week with a diet change. I felt very blessed. With her second bout, it took me about a month or 2 to get her regulated on 6 units of Lantus a day. This lasted about 4 months. I was disappointed she wasn't OTJ, but I had seen the high dose charts and I was still very grateful. Then she almost went OTJ in October (so exciting), and then it all fell apart in November. Quite the roller coaster. And now here we are with the diagnosis no one wants.
    I am very grateful for this forum and its dedicated experts. There are so many choices to make with acromegaly and I have trouble with decisions.
     
  44. suki & crystal (GA)

    suki & crystal (GA) Well-Known Member

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    May 4, 2014
    Believe me I still cry over Crystal now, nearly two years down the line, she was my soul kitty and taking the decision to end her suffering was the worst thing I have ever had to do, but it was the right time for her, but not me. But I made her a promise on her acro diagnosis that I wouldn't let her suffer and, as hard as it was, I kept that promise to her when daily life just got too difficult for her. and her QOL really wasn't good. The hardest part of this whole FD thing is knowing when to put the cat's welfare first; we love them so much and can't bear the thought of life without them that we are in danger of hanging on until the very last minute, and sometimes this is to the detriment of the cat. Yum will tell you when she wants to call time on it all, you know her well so listen to her wishes. Having said that, I hope it is a long way off for you guys. You have done well by her so far, and I'm sure you will continue to do the best you can. Take time to evaluate all the choices and the best options for Yum.

    You are so right, it really is a roller coaster ride, but one I, and probably everyone here , would do willingly all over again given the chance. Sending many vines to you both :bighug:


    I think you will find the USA is a listed country, but not sure of the implications though.

    "Listed countries
    The listed countries are:

    Antigua and Barbuda, Argentina, Aruba, Ascension Island, Australia, Bahrain, Barbados, Belarus, Bermuda, BES Islands (Bonair, Saint Eustatius and Saba), Bosnia-Herzegovina, British Virgin Islands, Canada, Cayman Islands, Chile, Curaçao, Falkland Islands, Fiji, French Polynesia, Hong Kong, Japan, Malaysia, Mauritius, Mexico, Montserrat, New Caledonia, New Zealand, Russian Federation, Saint Maarten, Singapore, St Helena, St Kitts and Nevis, St Lucia, St Pierre and Miquelon, St Vincent and The Grenadines, Taiwan, The former Yugoslav Republic of Macedonia, Trinidad and Tobago, United Arab Emirates, USA (includes American Samoa, Guam, Northern Mariana Islands, Puerto Rico and the US virgin Islands), Vanuatu, Wallis and Futuna."
     
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  45. Steph & Quintus & L & O

    Steph & Quintus & L & O Well-Known Member

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    Dec 9, 2017
    Oh great! I read three times though to be sure, but still missed it. This means that it's a country from which you can go through the "normal" procedure for importing a cat.

    Here's the airline list. The first series transport in the hold. The second in the "carrier", not sure what that is. https://www.gov.uk/government/publi...nt-of-pets/approved-air-routes-for-pet-travel

    Last I heard, coming over on the Eurostar from France was impossible because they didn't allow pets (check to see if still true). I took the Ferry from France to the UK with the dog and it was smooth and cheap.
     
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